Here we welcome comments and discussions on pretty much anything you take by mouth to treat Peyronies Disease.
What evidence is there that it either does or does not work? Link to studies or tell personal evidence, who recommended it, where you obtain it, etc.
Hawk, Administrator Posted: Mon Jun 20, 2005 10:10 pm
My question - Is it practical to think something can cure what it can't even prevent? I say no, and I was taking 400 and 800 IU of vitamin E respectively on alternate days for a year prior to getting Peyronies Disease
Hawk, Adminstrator Posted: Wed Jun 22, 2005 10:55 am
Everyone needs to be aware of the many possible side effects of colchicine. Most don't experience many of these side effects but they range from upset stomache and hair loss to damaged kidneys, liver, or bone marrow.
I have been on colchicine for 5 weeks and my white blood cell count has plummeted. Obviously, this compromises my entire immune system. Since I have a cancer history I will obviously never take another colchicine tablet. Even without this history I think my doctor would pull me off of them. At last word, the only treatment I am being offered by my Peyronies Disease specialist is penile implant after I reach the chronic stage.
Steveafike Posted: Fri Jun 24, 2005 10:44 am
HI people glad you are here, I have had pyronies for about two and half years now and tried all the over the counter med, e, a, and all kinds of supliments, with no effect. i have used the VED device and find I get short term effect from this usaged. I continue to use the ved and am trying L Agentine, I think I spelled it wrong sorry. I started taking it last week. I have seen many doctors and have found nothing they say or do is helpful. I am going to a world known doctor in dallas in couple of weeks and will let you know what he has to say. My peyronies, is along the whole right side of the my unit, and I find it difficut to maintain an erection. Any way i am glad we are here for each other. will read and post when i can Steve
Joshua, Global Moderator Posted: Sun Jun 26, 2005 11:34 am
Arginine (NOS)
Carnintine
High gamma vit E
Quality multi vitamin
My personal opinion is this are must for men with Peyronies Disease. I take other supplements as well but this should be the basics.
CDM Posted: Thu Jun 30, 2005 8:37 pm
Is anyone using serrapetese or natto,I got suckered into tryin neprinol from that other forum and although my condition hasnt worsened it also hasnt improved,Id be very interested in hearing what other supplements, vitamins people are taking and what dosages etc, to help their conditions.
cmd Posted: Thu Jun 30, 2005 8:49 pm
Also when you say l-arginine nos is nos actually written on the label.
Joshua, Global Administrator Posted: Thu Jun 30, 2005 11:45 pm
Yes, NOS is on the label. It is obviously just a NOS stimilant. I believe in this supplement. If you take at least 5 grams.
cmd Posted: Fri Jul 01, 2005 5:57 pm
so it comes in powder form not capsule.
Joshua, Global Moderator Posted: Fri Jul 01, 2005 8:30 pm
cdm wrote:
so it comes in powder form not capsule.
tablet form with timed release is typically the way i have seen it.
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taglioni Posted: Sat Jul 02, 2005 4:35 pm
I am taking 1500mg of Bromelain per day, it's a proteolytic enzyme commonly used for tennis elbow and other types of plaque buildup,
and I'm also taking Gotu Kola, an herb that was reccomended on a website, and 800mg vitamin E, and applying vitamin E oil also,
I only started a few days ago, after finally going to a uro. 7 months after three lumps appeared, then the bends,
mbarje
cmd Posted: Tue Jul 05, 2005 4:30 pm
Ok I got my nos so Im gonna try it and see,also I bought acetyl l carnitine what does this stuff help with as it says it helps promote memory,I dont want to remember when me dick was straight.
Joshua, Global Moderator Posted: Thu Jul 07, 2005 12:12 am Quotecdm:
Ok I got my nos so Im gonna try it and see,also I bought acetyl l carnitine what does this stuff help with as it says it helps promote memory,I dont want to remember when me dick was straight.
This is why I take L-Carnitine:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11446848&dopt=Abstract
It has many good benefits and I strongly feel it should be used by all men with Peyronies Disease.
joshua, Global Moderator Posted: Thu Jul 07, 2005 12:52 am
If you are going to take vit E, read the following link:
http://www.enerex.ca/products/gamma_e.htm
http://www.enerex.ca/products/gamma_e.htm
It appears High Gamma E is much better. My Dr got me on this early.
I am taking one 200mg in the morning and one 200mg in the late afternoon. We all know now that to much e is dangerous. 400 mg should be safe.
Hawk, Administrator Posted: Thu Jul 07, 2005 12:45 pm
Joshua,
I think this is the point where someone is supposed to jump in with a string of profanity and accuse you of being a Vitamin E salesma? :D. I love it here.
I have no faith in vitamin E however. I took high gamma vitamin E before I got Peyronies Disease. It didn't prevent it so how would it treat it. I suppose my penis might have fallen off (which would have saved me money) had it not been saved by the vitamin E, but I think it is useless.
Do I take it, yes. It comes under the heading of one of those "what the hell" treatments. It is affordable, has some health benefits (in spite of alarmist studies) so I take 400 IU high gamma E at noon. I take 50 IU of Alpha morning and evening in my multi-vitamin
Joshua, Global Moderator Posted: Thu Jul 07, 2005 1:44 pm
Hawkman:
Yes, I am like you on this subject I would rather be safe than sorry and use the e. However, I would not discount it usefulness just because you obtained Peyronies Disease while already using it. I have always understood it helps with the body's natural healing process not as prevention to Peyronies Disease. I mainly wanted to point out that if you are going to use the e than use the high gamma e.
Caspian Posted: Fri Jul 15, 2005 1:56 am
Joshua:
cdm:
Are you taking plain L-Carnitine or Acetyl-l-carnitine?
_________________
You are what you iz
Joshua, Global Moderator Posted: Sat Jul 16, 2005 3:36 pm QuoteCaspain: Are you taking plain L-Carnitine or Acetyl-l-carnitine?
I am taking Acetyl-l-carnitine. I should have pointed that out THANKS!
Joshua
Joshua, Global Moderator Posted: Mon Jul 18, 2005 2:19 pm
http://www.life-enhancement.com/article_template.asp?ID=610
Guys:
Go to the above link and read the entire page. It is very informative and interesting.
Joshua
Caspian Posted: Mon Jul 18, 2005 5:03 pm QuoteJoshua:
http://www.life-enhancement.com/article_template.asp?ID=610
Guys:
Go to the above link and read the entire page. It is very informative and interesting.
Joshua
Yeah. I read that a while back. I use to get their magazine. This article was in one of the issues. I would like to see some more studies to verify efficacy. Either way, it certainly would not hurt to take some ALC. It is really popular as a "life extension" supplement--especially when taken with alpha lipoic acid. It's kind of expensive but you can get for pennies on the dollar at www.beyond-a-century.com
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j Posted: Mon Jul 18, 2005 5:07 pm
Joshua, it is interesting but unfortunately I think it's also an example of some of the poor-quality studies that have been published on Peyronies Disease.
This one claimed an improvement of "15.9º to 8.4º, a 47% drop." 47% sounds like a lot until you realize that 15.9 degrees is not much to begin with, and an improvement of less than 8 degrees is probably within the margin of error of the measurement techniques.
If this group had an average curvature of 15.9 degrees, it must have included many patients who had only a few degrees - in my mind that wouldn't even qualify as Peyronies Disease.
I'm just not very impressed by these numbers.
Joshua, Global Moderator Posted: Tue Jul 19, 2005 5:17 pm Quotej:
Joshua, it is interesting but unfortunately I think it's also an example of some of the poor-quality studies that have been published on Peyronies Disease.
This one claimed an improvement of "15.9º to 8.4º, a 47% drop." 47% sounds like a lot until you realize that 15.9 degrees is not much to begin with, and an improvement of less than 8 degrees is probably within the margin of error of the measurement techniques.
If this group had an average curvature of 15.9 degrees, it must have included many patients who had only a few degrees - in my mind that wouldn't even qualify as Peyronies Disease.
I'm just not very impressed by these numbers.
I understand your point J but I think there is at least enough to justify adding L-Carnintine to your supplement list. Your thoughts??
Caspian Posted: Tue Jul 19, 2005 7:51 pm
I agree with you Josh. Just because the change in the curvature was not dramatic doesn't mean that it is not worth it. Every little bit helps. ALC is a great supplement anyway and can't hurt.
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j Posted: Tue Jul 19, 2005 10:15 pm
I got burned pretty bad by transdermal Verapamil. Lotsa money, out- of-pocket, for no benefit. And the 'study' behind that one looked w-a-y better than this one. What I learned was that if you spend a big chunk of money - and time - on something that doesn't work, you end up more frustrated and depressed than if you'd just done nothing. ALC isn't nearly as expensive as TV but it's still not just pocket change, for me anyway.
What a lot of these things have in common is that there's an initial study that seems to show an exciting result - then years go by, and you never see study number 2. That ALC study is now 4 years old...
I have heard a lot of good buzz about ALC, there is nothing wrong with taking it. If it were cheaper, I probably would. Check out
www.juvenon.com
...they sell a combination of ALC and Alpha Lipoic Acid on the basis of some very interesting experiments but rather thin supporting science.
Caspian Posted: Wed Jul 20, 2005 3:52 pm Quotej:
I got burned pretty bad by transdermal Verapamil. Lotsa money, out- of-pocket, for no benefit. And the 'study' behind that one looked w-a-y better than this one. What I learned was that if you spend a big chunk of money - and time - on something that doesn't work, you end up more frustrated and depressed than if you'd just done nothing. ALC isn't nearly as expensive as TV but it's still not just pocket change, for me anyway..................................
I have heard a lot of good buzz about ALC, there is nothing wrong with taking it. If it were cheaper, I probably would. Check out www.juvenon.com , they sell a combination of ALC and Alpha Lipoic Acid on the basis of some very interesting experiments but rather thin supporting science.
http://www.beyond-a-century.com/ is way cheaper. 100 gms of ALC powder for $9!
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Joshua Posted: Wed Aug 10, 2005 4:25 pm
CREDIT FOR FINDING THIS STUDY GOES TO HENRY ON BTC BOARD. Thanks Henry its an interesting study.
Sao Paulo Med J. 2005 Mar 2;123(2):54-7. Epub 2005 Jun 8. Related Articles, Links
Red cell aspartate aminotransferase saturation with oral pyridoxine intake.
Oshiro M, Nonoyama K, Oliveira RA, Barretto OC.
Hematology Division, Instituto Adolfo Lutz, Av. Dr. Arnaldo 355, Sao Paulo, Brazil CEP 01246-000. maoshiro@ial.sp.gov.br
CONTEXT AND OBJECTIVE: The coenzyme of aspartate aminotransferase is pyridoxal phosphate, generated from fresh vegetables containing pyridoxine. Vitamin B6-responsive sideroblastic anemia, myelofibrosis and Peyronies syndrome respond to high pyridoxine doses. The objective was to investigate the oral pyridoxine oral dose that would lead to maximized pyridoxal phosphate saturation of red cell aspartate aminotransferase. DESIGN AND SETTING: Controlled trial, in Hematology Division of Instituto Adolfo Lutz. METHODS: Red cell aspartate aminotransferase activity was assayed (before and after) in normal volunteers who were given oral pyridoxine for 15-18 days (30 mg, 100 mg and 200 mg daily). In vitro study of blood from seven normal volunteers was also performed, with before and after assaying of aspartate aminotransferase activity. RESULTS: The in vivo study showed increasing aspartate aminotransferase saturation with increasing pyridoxine doses. 83% saturation was reached with 30 mg daily, 88% with 100 mg, and 93% with 200 mg after 20 days of oral supplementation. The in vitro study did not reach 100% saturation. CONCLUSIONS: Neither in vivo nor in vitro study demonstrated thorough aspartate aminotransferase saturation with its coenzyme pyridoxal phosphate in red cells, from increasing pyridoxine supplementation. However, the 200-mg dose could be employed safely in vitamin B6-responsive sideroblastic anemia, myelofibrosis and Peyronies syndrome treatment. Although maximum saturation in circulating red cells is not achieved, erythroblasts and other nucleated and cytoplasmic organelles containing cells certainly will reach thorough saturation, which possibly explains the results obtained in these diseases.
PMID: 15947830 [PubMed - in process]
The entire report can be found here:
http://www.scielo.br/scielo.php?pid=S1516-31802005000200004&script=sci_arttext&tlng=en
j Posted: Wed Aug 10, 2005 6:02 pm
Well, that's a pretty dense paragraph. But what does it really say about Peyronie's? It seems to start with this premise: " Peyronies syndrome respond to high pyridoxine doses. "
What's the basis for that statement? What results are actually claimed?
After that point it talks about the dose that might be needed to get an effect.
Hawk, Administrator Posted: Wed Aug 10, 2005 6:23 pm
That is clearly the question.
We now know what saturation a specific dose will deliver. That would be very critical information if we could get an answer to the burning question. Now we need to know if it can cure, reverse, stop, or slow down the advance of Peyronies Disease?
Joshua, Global Moderator Posted: Wed Aug 10, 2005 7:11 pm
yes, I agree it does not point out how much Peyronies Disease was helped/cured but it is still worthy looking into.
The entire report can be found here:
http://www.scielo.br/scielo.php?pid=S1516-31802005000200004&script=sci_arttext&tlng=en
dcaptain Posted: Wed Aug 10, 2005 10:07 pm
Guys, I have to admit I've had one of those really, *really* long days, so maybe it's just the old noggin isn't willing to play ball tonight...but can someone please explain that article to me and how it might affect Peyronies Disease? I'm not being negative about it, I just honestly am wiped and don't understand it. Yes, I'm being lazy. But if anyone feels like explaining, by all means.
I'm smarter than I appear, I swear.
j Posted: Wed Aug 10, 2005 11:16 pm
I've only skimmed it and don't have the background to understand it , but the gist of it seems to be that the maximum "safe" dosage of B6, which is 200 mg/day, is enough to treat a number of conditions, including Peyronie's, that supposedly respond to B6 therapy. The article says that previous studies had used higher dosages but that this new study concludes they weren't necessary, 200 mg is sufficient.
Nothing is said specifically about Peyronie's, but I infer that the article in this footnote talks about treating Peyronie's with B6:
5. Rojer RA, Mulder NH, Nieweg HO. Response to pyridoxine hydrochloride in refractory anemia due to myelofibrosis. Am J Med. 1978;65(4):655-60.
I have started taking a product called Dr. Murad's Cardio Discovery.
It is a orange mix/powder form, one small scoop has:
L-Arginine =5 grams
L-Glutamine=100mg
Alpha Lipoic Acid =10 mg
Vit E=400IU
Vit C=500mg
green tea extract =50mg
I take it two times a day. That is over 10 grams of L-arginine! It helps with erections and I feel this might have helped me. Do a search and see what you think. I bought it from Wal Mart for $15.00.
I am also taking 2 grams of l-carnintine. I did add the 200mg of b-6. I know there was not much to go on with that study but I am trying it for a couple of months.
The above are a few of the new supplements I added. I am still on the ones I listed earlier.
Joshua
link to read about cardio discovery http://www.cardiodiscovery.com/
Hawk:
Per our phone conversation:
The information I have read does NOT show that L-arginine causes an increase in testosterone. However, I did read that L-carnintine does. I remember you telling me you prefer not to elevate your testosterone levels right now. You might want to look into that. I understand you take carnintine for your Peyronies Disease treatment.
What are your thoughts on this mix I posted above? It is the first time I have been able to consume that much arginine without getting an upset stomach.
Quote from: Joshua on August 23, 2005, 01:13:29 PM
Hawk:
Per our phone conversation:
The information I have read does NOT show that L-arginine causes an increase in testosterone. However, I did read that L-carnintine does.
If this is a joke to get me to post, I am coming after you ;) Joshua, I need that link or verbatim what you read. I have read that ALC is
better thantestosterone in treating many signs of aging etc. with no effect on PSA. I have searched in vain to find any indication that it raises testosterone. If it does, I must know because it could be life or death with anyone that has prostate cancer. Also keep in mind that
many older men harbor prostate cancer (PC) that have no clue they have it. PC is testosterone fed just like breast cancer is estrogen fed.
http://www.findarticles.com/p/articles/mi_m0801/is_8_65/ai_n6116981
"Bodybuilders have been taking ALC to boost serum testosterone levels." from a body building site
ACETYL L-CARNITIN
Acetyl L-carnitine (not to be confused with the fat-burner carnitine) can contribute to stable and even higher testosterone levels in athletes who might be walking a tightrope in terms of overtraining. Too much training volume without adequate rest days can cause drops in testosterone levels. Studies also show that acetyl L-carnitine may help improve the uptake of glucose by muscles. This is important because improved glucose transport into muscles could translate into greater muscle mass and possibly less body fat.
I've been taking around 2 grams or so of ALC a day for the last couple of months. I've actually not been taking anything for the last two weeks or so, but generally my regimen would look something like this:
2 grams of ALC
1 multivitamin
500mg of colchicine
400mg of 'Isomer E' the GNC vitamin E
Bee Propolis (the sign of someone getting desparate)
2 grams of L-Arginine
Omega 3/6/9 and Fish Oils
It's possible I might be forgetting something from my 'cocktail'...
The above dosage on the Colchicine represents a typo and is likely .5 mg. Maximum Cholcine dosing is only about 1.8 mg per day. 500mg would represent a likely fatal dose
Hawk
Nick,
Where did/do you get the Neprinol from? Is it something that's available at a place like GNC, or would you need a prescription for it?
Mezz, That looks like a nice 'cocktail" If your stomach can handle it, I would raise the arginine or go to NOS (AKG arginine). I feel so strongly about the benefits I have seen with arginine.
ALC intrigues me...and I have used it in the past for energy purposes... The reason I stopped it is that it caused an increase in acne and possibly an increase in hairloss as well (I have a full head of hair but slightly receding temples and I am genetically predisposed to balding).
This is the first I have heard of ALC increasing testosterone. I would like to see a well constructed study that supports this. There was a discussion on a few newsgroups that centered on whether ALC perhaps stimulated some of the same pathways as DHT...
This is intriguing because DHT (a byproduct of testosterone) is thought to play a role in regulating the smooth muscle of the penis (and in sensitive individuals also stimulate hairloss and acne).
This gets even more interesting if you look at some of the claims of those taking finasteride (DHT inhibitor) that have reported the development of peyronies disease since beginning medication!
So it looks like in some way, ALC may either mimic (or increase sensitivity to) DHT, and this could be responsible for its effects on peyronies disease!?
Has anyone come across an explanation as to why ALC might help peyronies? I saw the study that was conducted vs. tamoxifen, but it offered no explanation.
Quote from: Joshua on September 02, 2005, 03:21:07 PM
Mezz, That looks like a nice 'cocktail" If your stomach can handle it, I would raise the arginine or go to NOS (AKG arginine). I feel so strongly about the benefits I have seen with arginine.
Thanks Joshua- I'll admit that over the last few weeks or so, I've become pretty complacent about my regime. I think I'm going through a down-period, in terms of my motivation to be proactive as far as my condition. Basically, I tried to throw everything at it, initially, to see if I could see an improvement in that crucial initial period, before things became too stabalized. Didn't produce any result.
I will also say that this regimen HAS been a little difficult to handle from a stomach perspective. It's a lot to put on ones digestive tract all at once. The colchicine especially. I've stopped using that altogether, as I don't think I was seeing any benefit to it. Also, since my case is severe, I've come to realize to some degree that something like colchicine isn't going to be a solution. One thing I've been surprised by is that there aren't more people who have a strongly negative reaction to that drug. I found it to be very strong, and relatively toxic. I experienced some weird symptoms while on it.
I'm going to take your advise about the A-AKG products, Joshua. In fact, I've got another appointment with a urologist in London Ontario that is supposed to be a relatively experienced Peyronies Disease guy- he's supposedly trained under Lue, from what my local Uro tells me. During that appointment, I intend to inquire about the Pentox, A-AKG, Viagar/Cialis regimen that's been talked about. I'd like to get some more feedback from the folks here about their experiences with this regimen, if they've been using it...?
I'm interested in some of the enzyme based stuff, like Nattokinase, Neprinol and the like...expensive though- and I think that I would probably be throwing money away.
I'm hoping to re-initiate a discussion about the theory behind the Viagra/Pentox/N02 regimen that seems to be one of the more recent combinations for trying to treat Peyronies Disease.
What is the theory behind including Viagra? I'm a poor student, and although I could procure Viagra relatively cheaply, compared to straight retail prices- I don't understand why it is used in this combo? If you don't have any erectile dysfunction, is there any other reason why it would be beneficial? I guess perhaps it could increase blood flow, which would increase transmission of the Pentox..but other than that I'm at a loss as to why it is necessary. The reason I ask, rather than just go ahead and get it regardless, is that it is the most expensive element of this regime, by a significant margin.
What is Pentox? What is the basic theory as to what it does for Peyronies Disease sufferers? I'm sure this is probably 'the' critical element to the combo- so I'm not questioning its presence so much, but am hoping to get some background. How expensive is it?
The N02 I'm more familiar with because of my interest in bodybuilding/weight-lifting. It is an expensive supplement, and highly questioned within the bodybuilding community, as far as its value- but I can understand the theoretical role it would play in the combo. To some degree, it strkes me as an enhancement of the viagra, rather than really playing an independent role...
I'm going to be procuring all of these medications/supplements individually, and so knowing something about their relative dosages would be beneficial as well. Thanks-
Quote from: mezz on September 25, 2005, 02:21:06 PM
What is the theory behind including Viagra? ............. I don't understand why it is used in this combo? If you don't have any erectile dysfunction, is there any other reason why it would be beneficial? I guess perhaps it could increase blood flow, which would increase transmission of the Pentox..but other than that I'm at a loss as to why it is necessary. The reason I ask, rather than just go ahead and get it regardless, is that it is the most expensive element of this regime, by a significant margin.
Mezz,
I too would wonder "why Viagra". I don't buy into blood flow. If you can induce an erection without Viagra. You will certainly get less blood flow than from Viagra with no induced erection. No one will ever convince me that they can induce more blood flow to the core and surface on the penis than a firm erection and a bit of heat on the surface. Remember Viagra only has less than a 3 hour window of effectiveness. We are told, and my extensive experience with Viagra tells me that Viagra has no effect without physical or psychological stimulation. I took about 33mg of Viagra per night 5 nights a week for about 8 months. It was recommended following my radical prostatectomy. It supposedly encourages nerve growth but there is no evidence at all of that. There is some evidence that those that take a reduced dose nightly regain erectile functioning at a somewhat greater rate than those that take it only when planning an attempt at sex. I am a bit suspicious of those studies but even if true, the cause and effect is never addressed. Some of those studies were funded by Pfizer.
Also, even if it is true, it seems the logical choice would be Cealis which has a much longer half life (24 hrs V.s 3 hrs). I get a delayed back ache 2 days after Cealis which is a listed side-effect.
I have ED. With no ED, I would never spend the money on Viagra unless I had a very good explanation as to why I was doing it. I would also want to know what that explanation was based on
Guys,
I think the reason for l carnitnine, l arginine, VED, Viagra was to create erections, either daily erections or nocturnal erections.
I think the premise is good, the erections could force blood into the penis in areas that are lacking blood due to obstruction from the plaque.
Old Man explained this very well on the old BTC forum, but anything that causes erections seem to be in favor, it makes sense since younger men have more stronger nocturnal erections and have less Peyronies Disease. It also makes sense that some areas that contribute to the curve could be open and replenished with blood by more plentiful erections.
One thing that I noticed with myself is that the straighter and harder the erection, the less the curve, the only thing is that I don't have that many really hard and straight erections since I have Peyronies Disease, although I do get erections just not as strong as they were, but if they were as strong "consistently" I think the Peyronies Disease would resolve itself, just my opinion
Steven
If blood flow is the issue, and erections are weak, trazodone 25mg with food may well be the $.03 per night answer. It typically causes nocturnal erections at 1/6th the dose used as a typical starting dose for depression. The smallest tablet made is 50 mg and it has to be cut in half. It gives me better erections than 100 mg Viagra. Trazodone does list priapism as a side effect. Three cents vs. $10 dollars; minimal dose with no other noticeable side effect vs. Viagra with several side effects?
There is more posted on this under "Erectile Dysfunction"
I do not suffer from Ed However; I am always interested in erection boosters/enhancers. I use NOS and 5 grams of liquid arginine almost nightly to bolster my erection strength and help attack Peyronies Disease plaque.
I think strong frequent erections are the best medicine for Peyronies Disease therefore I tried trazodone for a few nights to test Hawks theory. The first night it flat knocked me out. I went to sleep and had a great nights sleep. I tried it again the second night and I had an endless rock erection. My erection was so strong it almost ached. I woke up in the middle of the night with one of the hardest erections I have ever had. The only thing I didn't like was it seemed like it took much longer to achieve an orgasm. However, this blows anything I have ever tried out of the water. I have used it here and there for erection strength but I don't want to become dependent on it so I have backed off lately. Thanks Hawk for the tip! Guys get some of this it works! I am about to hit one right now ;)
I believe Joshua posted that the only reason the first dose knocked him out is because he took a 100 mg tablet. While that is still a light doses for depression, all you need for nght time erections is half of a 50 mg tablet taken WITH FOOD.
It is dirrt cheap, may help you sleep, no adverse effects. It is usuall prescribed from 100mg to 450 mg daily so you can see how insignificant 50mg is. If you have a good GP and explain what you want it for, most will redily comply because it is an insignificant dose except for the erections.
So far it has worked on 3 for 3 people tried it. I take it almost nightly.
Question for Hawk:
Since I have a radical non nerve sparing prostatectomy which left me totally impotent, do you think that the Trazadone would work for me? I can achieve only a partial erection on my own either manually stimulated or help from the wife. The VED has been the only means of achieving a good solid erection since the surgery.
Another thing too is that I have had bypass surgery and am currently on several heart meds. They are supposed to have little or no sexual side effects, and appear to not cause any problem with reaching a climax/orgasm. I suppose that consultation with my GP or heart doctor would be in order before trying them out, huh?
Also, does it require an RX?
Old Man
Like Hawk and Mezz, I have been unsure of the value of increasing blood flow to counter an existing case of Peyronies Disease. For one thing, little is known about what causes plaque and curvature to occur spontaneously in the many cases that it does. We need to keep in mind that the plaque could not have developed in the first place without good blood flow. Whatever the actual mechanism, certain materials and forces were brought together by the body via the blood. It could well be that anyone in the the acute (unstabilised) stage who really keeps up the supply for that mechanism (i.e., maximizing blood flow on a regular basis) is enabling the situation to get worse. We only need to look at auto-immune disorders, allergies, etc., to know that blood as a transport system disrtibutes both good and bad actors throughout the body
In the months before my onset, I had been using Viagra a little more frequently than I had before. It worked very solidly but obviously didn't prevent Peyronies Disease. Could the sustained blood flow that it induced have been unnaturally excessive (for me as an individual) and actually allowed a natural body defense mechanism to go out of control?
I could understand true injury, as in bent or fractured penis cases, requiring that blood deliver what the body needs to repair. But with progressive cases of Peyronies Disease which appear to have a different origin, this thinking may not apply. I believe that what we are all calling "Peyronies Disease" will eventually be found to be merely a symptom for which there is more than one cause -- and therefore more than one prognosis and treatment. Yes, Peyronies Disease doctors prescribe sexual activity once the pain goes away (and drugs or supplements to help that activity) but that may only be because it keeps all the potentially depressed patients satisfied and functioning, both sexually and socially, while the search for a cure continues (or doesn't). Yet, are they sure that this cannot have a negative effect on the condition itself?
Can ANYONE at all verify that that following this mantra of blood flow really improves a true plaque/curve problem significantly? (I'm not talking about minor cases subjectively reporting "it helped a little") I'd love to hear that it actually does work, but until then, I'm worried that my own efforts to do that have perhaps helped bring me to my current severe level of Peyronies Disease (almost 90 degrees).
Quote from: Old Man on September 28, 2005, 10:55:42 PM
Question for Hawk:
Since I have a radical non nerve sparing prostatectomy which left me totally impotent, do you think that the trazodone would work for me? I can achieve only a partial erection on my own either manually stimulated or help from the wife. The VED has been the only means of achieving a good solid erection since the surgery.
Also, does it require an RX? Old Man
Answer- Old Man - If you can get a partial erection without taking anything, you are ahead of me. I can get a partial erection only with Viagra. If you ever get even partial night-time erections I am fairly confident it will work to give you good night-time erections.
Will it work for daytime Sexual Activity? This is a very difficult question. I am almost embarrassed to say I have never really tried it. The reason is that my solid erections only occur while sleeping and last only shortly after I wake-up. Right now since I may still be rebuilding nerves, (17 months after a prostatectomy), getting solid erections sometime is important. Because of that I take trazodone when I know it will work. I use viagra and and/or a VED for sex. I have woke up with solid trazadone erections only to have them fade away within minutes of waking up. I can only deduce that I have stress/anxiety factors kicking adrenalin into my system. When adrenalin receptors in the penis detect adrenalin, it guarantees loss of erection. In fact it is how they treat prolonged erection (priapism)
RX - You do need an Rx for trazodone. My family doctor is the best. He actually takes time, talks to me, and allows me to be a partner in managing my health. I told him I wanted an Rx for 25 mg of trazodone per night. His response was "if you are having sleep problems that is barely enough to have any impact." I explained that I have heard it causes erections, that I need erections for blood flow, and that I refuse to follow Dr. Mulhall's advice to continue penile injections for blood flow because of the Peyronies Disease. I also told him I have some manageable depression issues anyway. He told me 25 mg of trazodone is way to small to have any likely impact on depression but we would try it. For the erections. The very first night it worked great. It continues to work.
Trazodone was tested and marketed for depression. It has a very long history and they have found it also works for mild to moderate sleep problems. It is prescribed at 100mg to 450 mg daily for depression (the larger dose is divided through the day). It is prescribed at 50 mg prior to bed for sleep problems. It only takes only 25 mg for erections which are listed only as a side effect. In essence, I take it for the side effect. Does the side effect kick in with everyone? I don't know. I personally know three people who have tried it, and all three have experienced the side effect..
PS: It does not make me groggy. I awake refreshed, I can skip a night and I still sleep fine without it so I see
NO dependence issues at such minimal doses. It is cheaper than aspirin.
I may move these posts to "Erectile Dysfunction" and also leave a copy here.
Hawk:
I wonder why it works? Does it relax the smooth muscles and allow more bloodflow? Does it increase NO production? Its results are intense. They are real. This is not a placebo effect. Your right I took too much the first night. It seems to even work better with the 25mg dose. More is not better.
I have used it about tens times now and noticed real serious obvious opositive effects in nearly every use.
Kevin,
You make good points and raise very good questions. During acute Peyronies Disease does blood flow carry the Peyronies Disease causing factors to the penis and does it follow that an increase of blood flow increases those factors? Also, does increased blood flow contribute to increased inflammation? This would be counter to the hyperthermia treatment as well as some other treatments in the acute stage. I know of no treatment directed at decreasing blood flow, such as cold compresses. I am sure that like so much about this disease, Nobody really knows. For sure, the answer to that question is central to the approach someone would take with oral or mechanical treatment of acute Peyronies Disease.
If the blood flow does help acute Peyronies Disease, is it the actual blood flow, or that erections stretch the forming scar tissue, or both?
I do know that Dr. Mullhall wanted me to inject my penis 2 to 3 times per week during acute Peyronies Disease to stimulate erections. I would conclude that he either thinks it is beneficial to Peyronies Disease or at least not harmful. For me, that does not satisfactorily answer your question because he also thinks that 3 injections of bimix per week will not cause or aggravate acute Peyronies Disease. I think it clearly can, does, and did in my case.
I think it is established that an absence of blood flow to a healthy penis will cause healthy penile tissue to degrade. It does't matter if it comes from cutting nerves that dilate arteries, (slow deterioration), a mechanical band or ring left on too long, or priapism (an erection that lasts uninterrupted for more than 3 hours), both resulting in rapid deterioration.
Note to Kevin:
In answer to your question about anyone having positive results from increasing the blood flow into the penis after the plaque/nodules appeared, I can state that in my case it did. Having tried just about all the known and some unknown treatments for reducing the plaque I started using the VED.
The VED was primarily prescribed for ED after a non nerve sparing prostatectomy in 1995. I had the shortening effect after the surgery and very soon thereafter developed more plaque and nodules resulting in a 45 degree downward and 45 degree curve to the right. This made for a very traumatic experience along with the impotence problem.
My uro retired and turned me over to his associate, a lady doc who had experience with Peyronies Disease, ED and related uro problem as a VA hospital in GA. She soon started me on the verapamil injections (took 6 without deadening as I do not like needles in the penis) which did nothing. Together we decided to try using some sort of mechanical exercises for the Peyronies Disease. She had experimented with this while at the VA.
The result was a mild form of jelqing (more like massaging) and some mild controlled exercises with the Osbon Esteem VED. Altogether it took about 6 or more months to see any real good positive results, but they did occur.
I regained the lost length, the Peyronies Disease symptoms went away and the VED provided very good erections for intercourse. Today, have very little if any Peyronies Disease symptoms and sex is possible with no difficulty. Viagra and related ED drugs are out for me since I am on heart meds. The jury is still out on the long term side effects of the ED drugs as far as I am concerned.
I am not saying that this would work for any and all guys, but personally it did work for me. Having had Peyronies Disease symptoms from the age of 24, I had come to the conclusion that I would try anything to get results. None of the oral treatments worked and I consumed large quantities of some drugs.
The above is furnished only as information to any and all concerned. At least, I did not let the mess get me into a deeply depressed state. Positive attitudes are necessary to keep one's head above the problem which is alesson that I had to learn early on in life. As a counselor now for the ACS, I have to keep a positive attitude toward prostate cancer as well as all other men's health problems. Otherwise, how I would be able to assist others through their problems.
Sincerely, Old Man
This is great discussion, this drug (trapazone) sounds very good, my main concern would be prolonged erections lasting more than 4 hours causing priapism while sleeping. Hawk, do you think the erections last up to 4 hours while sleeping -- while using this trapazone?, normal nocturnal erections last 20 - 30 minute occuring 4 times a night but not 3 or 4 hours straight. Just curious, probably being too careful. But I bet this drug, if truly no side effects is the thing we could be looking for.
I am convinced that some forms of Peyronies Disease are caused by weak erections, mini trama in same location on penis, and lack of strong nocturnal erections. If you have all three, you are candiate to get Peyronies Disease. I think weak erections and mini trauma are what weakens the penis and allows Peyronies Disease to plant its seed. I also think normally the nocturnal erections could stop it at this point and would prevent the creation of plaque in most young or middle age people, however in our case the strong nocturnals are not there, for whatever reason (older, middle age or perhaps young)and the plaque seed grows unchecked.
I have never seen a post from a guy with Peyronies Disease who said he had strong nocturnal erections in 2 years on any forum. If you are out there, could you post?
This is all theory and just my opinion of course, not a Doctor or professional or anything like that.
One final point -- I have prostate cancer also, and just wanted to let people know that if you use NOS, read the warning on the label, it says if you have a tumor or maliganacy you shouldn't use NOS, just fyi.
Great conversation on this forum....
Steven
Steve you asked:
"I have never seen a post from a guy with Peyronies Disease who said he had strong nocturnal erections in 2 years on any forum. If you are out there, could you post?"
I've seen many posts on this forum and others where the writer mentioned in passing that solid nocturnal erections occur. Mine still do too, and they often wake me up (which "scares" them away pretty quickly, probably since I notice each time that the steep bend has not improved). L-Arginiine, like certain other supplements, is what makes them even more likely on any given night.
"I have never seen a post from a guy with Peyronies Disease who said he had strong nocturnal erections in 2 years on any forum. If you are out there, could you post?"
Oh yeah, I still do. Despite having the full constellation of Peyronies Disease, Dupuytren's Contracture and Lederhose Disease. And yeah it's a constant and unwelcome reminder of how bent I am. But at least the plumbing still works. By the way, I don't buy the trauma theory. Or, quite possibly, there are multiple routes to what we call Peyronies Disease. In cases like mine - and there are many - it's pretty clearly an inherited fibrotic disorder.
J., Kevin
Thanks for your response, Yes it seems some guys do have strong nocturnals erections, sort of pours water on my theory (erections are the cure). Also I think some cases (not all) are caused by mini truama, some by major trauma, some inherited. Maybe the cure for each is a little different, but I still think erections paly a role. My curve isn't that bad, perhaps 20% but I miss the old fullness and carefree - take for granted - attitude.
Steven
I am a major insomniac. I take trazodone nightly (not addictive like many sleep aids). I have been on trazodone for about 3 years or so. I can say in that time it has done nothing at all for my wood. The priapism side effect is like 1% or so. My Dr. has been prescribing trazodone for years and he has never heard of this happening. It is documented it just doesnt happen that often. It would depend on the dosage I would imagine. Hi doses can be nasty. Imagine nightly flat spins, it really sucks at a high dose.
Nick,
Do you mind mentioning more about your dose, time, food, etc for the Tazodone?
3 out of 3 people that used low dose (25 mg) had excellent response. None had priapism. One of those 3 had nothing (or slept through it) at 100mg dose.
Thanks
Hawk
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15947830&query_hl=2
This looks good...but my only question is where are they getting that B6 helps with peyronies in the first place? It should be noted that B6 is fat-soluble...so caution should be used with large doses.
CONTEXT AND OBJECTIVE: The coenzyme of aspartate aminotransferase is pyridoxal phosphate, generated from fresh vegetables containing pyridoxine. Vitamin B6-responsive sideroblastic anemia, myelofibrosis and Peyronies syndrome respond to high pyridoxine doses. The objective was to investigate the oral pyridoxine oral dose that would lead to maximized pyridoxal phosphate saturation of red cell aspartate aminotransferase. DESIGN AND SETTING: Controlled trial, in Hematology Division of Instituto Adolfo Lutz. METHODS: Red cell aspartate aminotransferase activity was assayed (before and after) in normal volunteers who were given oral pyridoxine for 15-18 days (30 mg, 100 mg and 200 mg daily). In vitro study of blood from seven normal volunteers was also performed, with before and after assaying of aspartate aminotransferase activity. RESULTS: The in vivo study showed increasing aspartate aminotransferase saturation with increasing pyridoxine doses. 83% saturation was reached with 30 mg daily, 88% with 100 mg, and 93% with 200 mg after 20 days of oral supplementation. The in vitro study did not reach 100% saturation. CONCLUSIONS: Neither in vivo nor in vitro study demonstrated thorough aspartate aminotransferase saturation with its coenzyme pyridoxal phosphate in red cells, from increasing pyridoxine supplementation. However, the 200-mg dose could be employed safely in vitamin B6-responsive sideroblastic anemia, myelofibrosis and Peyronies syndrome treatment. Although maximum saturation in circulating red cells is not achieved, erythroblasts and other nucleated and cytoplasmic organelles containing cells certainly will reach thorough saturation, which possibly explains the results obtained in these diseases.
PMID: 15947830 [PubMed - in process]
Does anyone have any info on Neprinol? I have read about various positive claims on other websites....thanks
My doctor has just prescribed Tretal for my Peyronies Disease. Does anyone have experience with the medication?
Quote from: cary on October 19, 2005, 01:51:25 AM
Does anyone have any info on Neprinol? I have read about various positive claims on other websites....thanks
Cary,
If you go to the search button right under the banner at the top of the page an type in Neprinol, you will see about 4 references with limited conversation. Most are by Nick who has used this product. when the search results come up, click on the title just above the blue quote box to go straight to that post.
I have tried Wobenzyme and Fibrozyme with serrapeptase and a blend of several other proteolytic enzymes. I was on them for over 2 months at high doses and was not impressed.
The only thing I ever took orally (including colchicine) that did seem to have a positive impact was 2500 mg of Acetyl L-Carnitine broken into about 3 doses a day.
Hope this helps and we all welcome you as a "poster" on the forum. We appreciate you contribution.
Quote from: jmd on October 19, 2005, 07:45:51 AM
My doctor has just prescribed Tretal for my Peyronies Disease. Does anyone have experience with the medication?
Welcome as a contributor to the forum.
Hopefully someone that has tried Trental (pentox) will respond. While it has been around for years for other uses, it is fairly new and just being investigated for Peyronies Disease. I know of no studies to back-up any claim that it helps Peyronies Disease, only some logical theory that it might help.
Thanks for posting jmd and keep us updated on dosage, any side effects, and any positive results. It is important to have solid data on things like current degree of curve, nodule or plaque size, number, and location, indentations, pain, etc so you don't get caught in that mode of "it might have helped some but I'm not positive..........." Many of us have been there.
Thanks again for the post.
Hi,
I was wondering if anyone has tried Boluoke? I realise that it is very expensive but it is supposed to be the most effective of all the enzymes.
Cheers.
Well here goes. I am brand new so bare with me. I have been on vitamin e 600iu for about 1 year per my uro. I have no changes yet. Also he prescribed potaba, it upset my stomach so i stopped taking it but i am thinking about trying again. This is an awful disease, it is really messing with my head. I'm starting to think that nothing works. Thank you for this forum.
Lost2,
First, we don't bear with new contributors here. We celebrate every time we have a new member that takes the step you have made to become an active contributor to the forum. This forum belongs to you as much as it does to any other active member. Thanks, from all of us.
Lost2, what follows in just another member's opinion: I think Potaba and vitamin E have no measurable track record for helping Peyronies Disease. I base this on the fact that most people that have Peyronies Disease take vitamin E at some point in their search for help. I took 400-800 iu of Alpha/Beta/Gamma (mixed Tocopherols) vitamin E for more than a year before I developed Peyronies Disease. I still take it for many reason but Peyronies Disease is the least of them
Of all the people I have known on the forums, I have never heard a soul say that, "just maybe, potaba helped" their Peyronies Disease. Keep in mind, it may have kept them from getting worse than they would have gotten without Potaba but that would have to be speculation. Unlike vitamin E, as you know, Potaba has nasty side effects and also unlike vitamin E it doesn't have other redeeming benefits. Also, even promoters of Potaba would probably agree that it must be taken in the first 18 months (preferably in the first few months) to have much hope of benefit.
I do think there or many options that could help. There is a ton of information and a ton of experience on this site. While we have no cures, I think there are options to help with many of the components that accompany Peyronies Disease. Whatever you do, don't blindly accept my comments (or anyone else's). As I said, I am only one more member here and far from the most knowledgeable.
I personally put some value on Acetyl L-Carnatine, proper use of a VED, and proper application of heat for Peyronies Disease itself. Any associated ED also has some workable treatments. To be objective however, I have report that I have some anecdotal evidence, a few minor studies, mixed with a dose of speculation.
I look forward to your continued participation. It is only people like you that actually make a forum.
Welcome Lost2! I am very glad you found the forum. If you get a chance research High Gamma E if you are going to take vitamin E to help with Peyronies Disease it seems logical to use the high gamma E.
Thanks for posting and again welcome
Well I saw the new Urologist here at the VA in Anchorage. he had some good ideas. And I let him know what I've been able to learn about this stuff from everyone here and other places.
Since I'm stable and have been for years, he wants to try Colochicine and celebrex for 3 months a see what happens. He says that he's had patients who have had great results with those 2 medications. (sure why not what have I got to lose).
While I was in the office he popped up a website and was looking thru it, found some articles that he says he wants to read and think about, one was ESWT. He actually was very understanding and very compassionate about the problem.
He said we'll try this first and see if anythoing happens, then explore the surgical end of it. He did talk about the patch thing. I told him I've lose enough with Peyronies Disease and didn't want a Nesbet, he laughed and said he understood that. Actually I think this guy is going to be alright..
Asked me what it looked like and I said looks like a coat hook. bend about 2 inches from the head at a 90 degree angle. Ya know you can sense things about someone when you first meet them. I felt good about him, he's young and has fresh ideas. He wasn't to keen in the Verapamil cream.
Don't blame him, 250 bucks a month for something that is questionable, in my book anyway.
So we'll take the wait and see attitude for now.. In three months we'll go from there. Keep your fingers crossed guys...
Hawk, You mentioned Acetyl L-carnitine. I had tried that a couple years ago and really was impressed in the first month or two. I remember feeling incredibly fatigued one day, stopping it and sleeping as if I hadnt slept in months. I felt like it never let me sleep. Was kinda a super-stimulant of sorts. I also felt like it had a somewhat negative effect on me in terms of plaque reduction.
That was my experience. I still have some. After reading your post I did some additional reading on it and cant find anything really negative. I also found that there is and acetyl choline connection. Im not sure if this led to my use of lecithin and phospholipids. I noticed a big difference in the softness of plaque and quality of erections with this substance. In fact, looking back I think ALC had some positive effect there too. I feel like there's something to this. I couldnt handle the side effects of lecithin and ALC but I wonder if acetylcholine, choline or the lipid structure in a lecithin or other oil is the key to the softer plaque.
I write this because Im more encouraged about ALC now and hearing another person mention a benefit from a substance that increases acetlcholine makes me really curious. I also read something where Ecstasy increases acetylcholine which could possibly explain why i liked ALC so much in the first few weeks. i've never used that kind of drug but remember my putting was exceptionally good the month I took ALC.
Sorry for the rambling, I feel like there's something of great value somewhere between lecithin, essential fatty acids and acetylcholine and/or choline. I was thinking it was the phospholipids in the lecithin that were creating the increased flexibility and softer plaque. Damn, I wish I was smarter or knew more because there's some benefit to be gained if we could pinpoint what creates the benefits, and why.
Torino,
On the surgery topic ( https://www.peyroniesforum.net/index.php?topic=48.0.html ) « Reply #35 on: October 26, 2005, 10:47:54 AM » you stated:
Quote from: torino72 on October 26, 2005, 11:47:54 AM
I was told to avoid tea and purple skinned fruit, such as grapes and plums, avoid Vitamin C supplements, and to take 500mg calcium and 50mg zinc daily.
I am very interested in whether you have any clue why a doctor would make the recommendation to avoid purple foods and what it was based on? I have studied nutrition for decades and know that purple foods are packed with powerful antioxidants called anthocynanis (SP). They are especially known to improve circulation, and prevent blood clots and heart disease.
Thanks
What is the consensus on vit C? I have been taking for years and now I read that it may cause too much collagen to be deposited at the site of an injury. That is what the people that make TV say.
Quote from: phil on November 02, 2005, 07:49:17 PM
What is the consensus on vit C? I have been taking for years and now I read that it may cause too much collagen to be deposited at the site of an injury. That is what the people that make TV say.
Phil,
I too have heard several sources warn against vitamin C if you have Peyronies Disease. However, I have never heard of a single study that suggests a negative impact. I have also never heard those that issue the warning give any explaination.
This is what I do know about vitamin C: Vitamin C and L-Lysine (an amino acid) are the two main building blocks of collagen. Some naturopathic doctors claim they enhance
natural collagen replacement and slow cancer metastasis because cancer cells spread by producing an enzyme that allows them to dissolve their way through collagen.
Many dermatologists and "beauty doctors", N. Perricone being one of them, claim that vitamin C is essential (along with diet) in maintaining the collagen that prevents sagging skin.
Clinical studies within the past 24 months have found that vitamin C helps rheumatoid arthritis but that it speeds up osteoarthritis which is the most common form.
Vitamin C is a powerful antioxident
I am left to conclude that vitamin C boosts immunity but that it can aggravate some autoimmune disorders. It also seems clear that it is a component of collagen building. While this is enough to make me cautious I am not sure this proves vit C contributes to abnormal collagen. I also question how one can try to slow Peyronies Disease by depriving the entire body of collagen building materials. After all, collagen is probably the most common substance found throughout the body. It is necessary for everything from skin, to connective tissue that holds our organs in place.
I would like to see an actual study on vitamin C and Peyronies Disease if anyone can find one.
I take about 500 mg per day although I skip a day or two a week just because of routine and it has not stopped some improvement in my Peyronies Disease. Like everyone else, I use a formula of 1 part facts, one part logic, and 1 part wild guessing.
Welcome to the site Phil and thanks for the posts. We value your envolvement.
Hi to all
I have a question about pain and pain meds. Does anyone have any experience with this. Surely I am not the only one with extreme pain both flaccid and erect. I mentioned in my history some of the meds but I am interested also in any noticed side effects relating to the state or condition of the penis while taking the meds. I know for sure I was helped while taking medication. It was subltle but there. Anyone?
Lost2
OK i havent posted in a while on either site, but I will update what I have been trying lately. I have been trying this crazy asian herb called Yunnan Paiyao for almost 2 weeks. I felt like it was helping at first like anything else, and I havent noticed any improvement the last several days. I will keep you updated. Keep tryin stuff gents, and let everyone know if you are having success. I have enough of this Yunnan for another 13 days, and I will decide from there if I am goin to try more.
We welcome your first post since we set up the new Simple Machines forum. You mentioned that:
Quote from: droberts10 on November 03, 2005, 06:08:22 PMI have been trying this crazy asian herb called Yunnan Paiyao for almost 2 weeks. I felt like it was helping at first like anything else, and I havent noticed any improvement the last several days.
I am curious on what made you think it would work, what made you think it was working afer only a few days, and what realistic improvement you would expect after just a several more days?.
Do you think it is realistic to expect a disease that has baffled all attempts at treatment for hundreds of years to give way to a few days of taking an herb? I tend to hope for minor improvement over many months of using several approaches.
Yunnan Paiyao is used to help blood clots. I have a problem with circulation, so I just thought that I would give it a shot. I will update when I have more time with it. Im just shooting in the dark like anyone else. Hopefully with enough people shooting in the dark, someone can hit the bullseye.
Hello all,
Just found you again - thought the forum was still down or under construction or something. I just went to a new uro after 10 months or more of ignoring everything. This one actually examined me and could not find any plaque, he prescribed Potaba - 4 pills 6 times a day. I am at the end of my first day and my stomach is so so right now. My question is - so how effective can Potaba be? I had not heard anything positive on it before when I visited my first uro for this problem - and have tried to find info online but to no avail.
It is good to be back - ignoring this was not the way to go. the guys I met before here were always great and very supportive. So maybe I'll stick around this time.
Had a chance to read through this enitre thread and found one mention of Potaba. It was not a positive statement - does anyone have something else to say about it/ did anyone take it for 3 months? If i continue with it I have to have the prescription rewritten - it was written for 200 pills which will only last 7/8 days at a cost of $60.00... yikes!
just web site i came across..
http://www.urologychannel.com/erectiledysfunction/alternative_treatment.shtml
Note to All:
This is just my personal experience with Potaba/Paba. I took over 17,000 of the white tablets with absolutely no effect on my curve, plaque, nodules or anything else.
My uro stated that I must have had a cast iron stomach to tolerate that much of the stuff with no major G.I. problems.
I gave up the fight with potaba/paba and have never looked back on it.
Might work for someone else, but I doubt it.
Old Man
lostlove:
Checked out the link that you gave. There is a lot of good information about Peyronies Disease there. Worth checking out by anyone needing help with Peyronies Disease.
Old Man
Old man,
THANK YOU for sharing that with me. That is sort of where I am at with it. Taking these puppies - I chose the 6 pills 4 times a day routine is more than a little disruptive and kind of a pain. I get some initial stomach upset then it calms down.
Anyone else have experience with it? or know anything more about it?
I don't have any firsthand experience with it but in the years I've been following forums and reading about Peyronie's I've concluded it's in the same category as many other Peyronies Disease treatments: urologists continue to prescribe it because somebody, long ago, apparently claimed, as the result of some very small and never repeated 'study', that it worked.
My own specialty is transdermal verapamil: as a former user I can tell you exactly how it drained my bank account for 9 months while having no effect on my bend.
J,
This is confirming what I thought when it was prescribed to me. I am not sure I will continue taking them especially if I have to pay $60.00 every 8 days for it. I've heard verapamil was pricy - he wrote me a prescription for that if I wanted to give it a try. Uro's are funny about this aren't they? Maybe they just don't like having to see patients with something they don't know how to treat - so they throw a prescription or two at you and hope you don't come back.
I guess it's easy to get cynical about doctors. If I saw it from their side I'd probably cut them a little slack. Some people get angry if they go to a doctor and he doesn't do anything. On the other hand, we're being offered treatments that make us sick, or cost us a lot of money, or both, apparently without much real reason to expect that they'll work.
At some point, as years go by, it's reasonable to expect that urologists communicate to some extent and arrive at a consensus as to whether something works or not. I don't see this happening.
It is very easy to get cynical and I working at it. It doesn't do me or anyone else any good really. My energies need to be devoted elsewhere not at being angry etc. It is reasonable to expect that orologists would be working together/communicating about treatments and advising patients as to which things just do not need to be tried anymore. Potaba / verapamil / Vit E etc. We have to believe and hope that in time positive things will happen.
Quote from: Davidw on November 07, 2005, 07:56:01 PM
It is reasonable to expect that orologists would be working together/communicating about treatments and advising patients as to which things just do not need to be tried anymore. Potaba / verapamil / Vit E etc. We have to believe and hope that in time positive things will happen.
I do not believe it is helpful to be either cynical or unrealistically optimistic. After hundreds of years, there is no reason to believe positive things will happen unless we are talking about some spin-off treatment hundreds of years from now. I do not believe positive things ever will happen in our lifetime unless we are willing to cause them to happen. If there is any realistic evidence that would cause me to reassess my observations and conclusions, I would happily receive that information.
Either we do our part or watch ourselves and our families accept the consequences.
There is nothing I can add to what Hawk said except to second his remarks. I've got some catching up to do with business matters since I've been away, and couldn't get on line, but I'm going to post an action outline of how I think we need to address this awareness issue shortly.
It's been over 300 years of inaction by the Peyronies Disease patient and nothing has really happened. As Hawk said, " I do not believe positive things ever will happen in our lifetime unless we are willing to cause them to happen".
AMEN my friend.
Larry H
I dont see the positive results with yunnan to date, and I am recently trying a liquid supplement that apparantly reduces plaque in the brain called PEGysomal Resveratrol. Started like 3 days ago, and I will keep you updated. But the yunnan does not seem worth it IMO altho i am goin to stay on it for 6 months. Good luck all.
Hi all,
I have been checking in on the forum for several months but haven't posted anything. I'll tell my story.....My first experience with Peyronies was when I was 26. I was in my last year of medical school. A uro I knew didn't add much. The medical literature at the time suggested Vit E. I took it, 800mgs daily for several months....guess what complete resolution in several months......until now. i am now 43. I had a painful erection back in March, did not recognize a plaque till several weeks later, it is the exact same spot I had originally. i should also add, I am very healthy otherwise and was taking VitE/B complex supplement daily for years.
I put myself on topical verapamil for 6 months, pain went away immediately. But I suspect, given the course of the disease, it would have done so in time anyway.
The verapamil did nothing for the bend or the size of the nodule. I gave up on verapamil - very expensive. For the past 4-6 weeks. I have put myself on Unique E,
a natural Vit E supplement+Vitalzym(which was recommended by the skeptical nutritionist)+Acetyl-L-carnitene+ VitC. I emailed Dr Herazy at the Peyronies Institute. I had discussed my concerns about Vit C accelerating or adding to collagen deposition. His thoughts were that Vit C helps with normal collagen deposition and should not interfere with abnormal deposition as occurs in Peyronies Disease. My compromise was to take 1000mgs as opposed to the recommended 2000-3000mgs. Where am I now??? No change in the bend, no pain, however. I still get nocturnal erections and am able to have intercourse. No change in the size of the plaques. Ok that's my story ........I welcome incite, any new ideas, and if someone can instuct me on how to use infra red heat I would appreciate it..........thanks........to the left
A few years ago some group did a small study that seemed to show that ALC had an effect on Peyronies Disease. The effect wasn't dramatic and the group was small. Nevertheless I've been hearing more buzz about ALC all the time, especially in combination with alpha lipoic acid. Maybe you've heard about Juvenon, a company formed to market this combination on the premise that it stimulates mitochondrial repair and hence is a sort of general anti-aging agent. Time will tell if there's really anything to those claims, but the combination of ALC and ALA isn't very expensive, seems to be harmless and might have benefit. I took some for a couple months and would have to say I felt "better" in some ways, although no obvous effect on my bend. Never underestimate the power of a placebo. ;) I plan to try it again for a longer period.
As for vitamin E, I took it for years with no effect. And transdermal verapamil - don't get me started on that one.
j,
I too recognize placebo effect exists but like you I got no placebo effect from vitimin E,. I got none from 2 different expensive enzymes. I did however get an effect from ALC (I always took Alpha lipoic acid). I have very slight pain, but when I start or stop ALC the pain would start or stop about 4 days later. My curve also improved during this time. I am less sure if that was the ALC but as you say it has no downside like potaba, colchcine, VI, the cost of TV and many other treatments with no more documentation to back them up.
Quote from: Old Forum on August 20, 2005, 05:32:18 PM
Joshua, Global Moderator Posted: Mon Jul 18, 2005 2:19 pm
http://www.life-enhancement.com/article_template.asp?ID=610
Guys:
Go to the above link and read the entire page. It is very informative and interesting.
Joshua
Hi there !
Is this the same supplement as Acetyl-L-Carnitine ?
Acetyl-L-Carnitine Arginate Also is taking a water based formula just as effective as taking tablets?
Does anyone know what the toxics threshold is, for L-Arginine plus Acetyl-L-Carnitine ?
Thanks very much in advance.
Awesome unique forum btw !!
ALC is routinely recommended at 500mg 3x per day for a total of 1500 mg but some studies for alzheimers and nuropathy in diabetics use 1000 mg 3 x per day for a total of 3000 mg (3 grams).
I have never heard of a toxic level with this nutrient and it has no know negative drug interactions. Rarely it will cause a skin rash in some individuals and occassionaly has the side effect of an increase in body odor. I took 2000 to 2500mg per day with no side effects. I am unsure about your other question, but since L-Arginine is nothing more than an amino acid (a protien) and is contained along with other amino acids in high protien supplements taken by athletes (in high doses) I think it is unlikely to cause any problem.
One contraindication is that people with significantly impaired kidney function should limit all proteins.
PS: Thanks for your expressed appreciation for the forum. We all thank you for those words. ;)
I have ued L-arginine at up to 5 grams a day. My reasearch shows this to be a safe upper level dose. I do stop and give my body a break every now and then, at least a week out of every couple of months.
Hey folks,
Cheers to Hawk and Joshua for your helpful and quick responses ;)
Im going to give ALC and vitamin E a try for about 2months since it is recommended here.
Does anyone have positive experiences with DMSO?
Also is NOS the same as L-Arginine or is it something totally different?
I took a one week break of my daily routine of heat massages on the fibrin scars and
I noticed the scars were much harder and dense like. Yet I was still taking my Peyronies Disease supplement formula.
Does anyone do a daily heat massage? I would recommend this too everyone with Peyronies Disease.
Try using Evening Primose oil/Borage oil as the GLA in it helps to produce Prostanglandin E-1
which softens Penile scars.
Hope this helps!
Cheers all ! 8)
Forgot to add ....
Can anyone provide a purchase link for
Gamma Vitamin E+DMSO+ Acetyl-l-carnitine ?
Found some Acetyl-l-carnitine but there abit expensive ... Is there a
liquid form of Acetyl-l-carnitine out there?
Cheers !
P.S Im in the UK but any purchase link will do for now ;)
Here are 2 sites. The first one Puritan Pride cannont be beat for price. Their price is marked up and then discounted because they ALWAYS have a significant "sale" going. Often it is buy one get 2 free. I have found no one to beat their prices. They also have fairly objective information.
http://www.puritan.com/pages/file.asp?xs=9B4B4681A2B147D8994BA73F1A243CAA&PID=4515&CPID=32&np=1
Young Again Nutrients - also has good published studies on many topis and mail interesting ads and news items if you sign up. They are a bit more pricey but have some harder to find products.
http://www.youngagain.com/index.html&query=acetyl&submit.x=10&submit.y=10
ahhh I can always depend on you Hawk !! Thumbs up !!
Will give them a good read now.
Cheers !
Quote from: Joshua on November 29, 2005, 09:52:53 PM
Quote from: learn4life on November 28, 2005, 08:04:33 PM
What would you guys pick from the following :
http://www.ihealthtree.com/dmso.html
Is 70% pure best or maybe 90%?
What about Oil versus cream??
I would pick the listed Dmso Liquid, 99.9% Pure Dmso, Unscented, 8oz,
Good Luck!!
Joshua
Keep me posted I am very interested in DMSO.
Hey Joshua ! Hows things? Peyronies Disease getting better?
Mine is getting abit better but to me it feels like alot !!
Im not sure if it is the Neprinol or the combination of the treatments ??
Anyways could you recommend a Vitamin E product to help with Peyronies Disease?
Does everyone here experience that Vit E helps with Peyronies Disease??
One idiots opinion:
I always took and still take vitimin E because of other benefits in reasonable doses, but I personally have no personal indication, and have seen no evidence it helps Peyronies Disease in the least.
I have used natural vitimin E in its most active form in humans which is alpha-tocopheryl, as well as mixed tocopheryl (beta, gamma). I usually take both types. It is fairly cheap, has no known toxic side effects, and has some health benefits. There is one recent study suggesting that doses of over 400IU over long periods, result in a higher death rate from many causes (heart, cancer, etc). It is suggested that in large doses it could block other anti-oxidents, but the study is controversial and many consider it flawed.
Quote from: Hawk on December 02, 2005, 08:13:39 AM
One idiots opinion:
I always took and still take vitimin E because of other benefits in reasonable doses, but I personally have no personal indication, and have seen no evidence it helps Peyronies Disease in the least.
I have used natural vitimin E in its most active form in humans which is alpha-tocopheryl, as well as mixed tocopheryl (beta, gamma). I usually take both types. It is fairly cheap, has no known toxic side effects, and has some health benefits. There is one recent study suggesting that doses of over 400IU over long periods, result in a higher death rate from many causes (heart, cancer, etc). It is suggested that in large doses it could block other anti-oxidents, but the study is controversial and many consider it flawed.
mmm ... Ok thanks ! Think im going to leave that one out for now unless someone
really has experienced good healing powers from Vit E.
Hey Hawk .... do you take Fish oil and Borage Oil ? I find taking them 3000mg split during the day and
also a daily massage ... say 15 mins or longer, it seems to help soften the penile scars.. Have you tried?
In a few sources it mentions it helps boost the Prostaglandin E1 .. what do you think?
I have not taken fish oil or borage oil since I have had Peyronies Disease
I am interested in the source of the information about fish oil and Borage Oil increasing Prostaglandin E1. Can you give us a reference. If that is true it could be very significant. There are a multitude of prostaglandins and I need to refresh my memory to the role of E1.
The "Oxygen / Collagen" post under "Reference Library" refers to an absence of Prostaglandin impacting collagen production and matrix.
Thanks for the info
Greetings,
Has anyone here used the chinese herb called Wogonin? I came upon the following research and it seems promising.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14616461&query_hl=7
Cheers.
Hi guys,
I was wondering if anyone has looked into using this stuff,it sounds promising,but so do most things at first. www.cardiorenew.com
Quote from: Hawk on December 02, 2005, 07:17:10 PM
I have not taken fish oil or borage oil since I have had Peyronies Disease
I am interested in the source of the information about fish oil and Borage Oil increasing Prostaglandin E1. Can you give us a reference. If that is true it could be very significant. There are a multitude of prostaglandins and I need to refresh my memory to the role of E1.
The "Oxygen / Collagen" post under "Reference Library" refers to an absence of Prostaglandin impacting collagen production and matrix.
Thanks for the info
Ok. This is taking from a book I have bought from here :
http://www.amazon.com/gp/product/159800168X/qid=1133840369/sr=8-1/ref=sr_8_xs_ap_i1_xgl14/104-3896453-5763901?n=507846&s=books&v=glance
I have taking bits out of it and not every word.
The Secret for a Perfectly Straight and Massive Penis-Prostaglandin E-1 (PGE-1)
Have you seen in your local Drug Store supplements called "Evening Primose Oil" or "Borage(Starflower Oil)
The effect on skin Elasticity is also Great.All these effects are due to gamma - linolenic acid(gla).it is essential for the
production of Pro E1 in the body, which regulates several functions.Its n1 benefit for the man is an increase in the
elasticity and stretching abilities of all nerves and blood vessels in your penile tissues.
Its role is to continuously increase the elasticity of the penile tissue and suppress the release of hardening colagen.
Your body will convert it into pro E1 which will help to preserve the elasticity and youthful condition of your entire skin for a long time.
You can apply on your penis gla rich oil during regular vip genital massages. this will supress the release of hardening colagen.
Second source: http://www.actionlove.com/cases/case13917.htm
A TON of infos here. I have been a patient of Dr.Lins for several years and he has helped me alot with Peyronies Disease.
His website has so much information that it would take many months to digest it all.
If anyone is wondering about his herbs ... It does what it says exactly on the website. I was taking
many different packages a day and about 4-6 pills a day but recently after doing a colon cleanse and liver flush I only require
1-2 a day. Anymore and it drives me wild !!
Colon cleanses helps to unblock the intestines which makes for better absorbing nutrients and cleaning out toxins and waste.
If your not having the same amount of Bowel movements a day as your having meals ... then I suggest you study the Colon and its cleanses.
If you have been a drinker or even been an unhealthy eater then I suggest looking into a liver flush. Im only 21 yet I flushed out many stones
from both of my liver flushes. I have always maintained a health lifestyle and once was an amatuer boxer yet because of my 2-3 year hell living, I had
those problems.
It is really strong stuff so please be careful before trying them.
I found with rubbing GLA + Vip cream, doubles the effects of Pro E1 production and it really does give it the elastic and normal look/feel.
Of course it is not always a guarantee it will cure Peyronies Disease completely as even Dr.Lin will tell you this if asked. This depends on the damage done.
Sometimes 90% is possible and sometimes only 50% is possible.
The bottom line is that in my experiences both Alan Ritz and Dr.Lins methods/advice has really helped with Peyronies Disease.
Not just Peyronies Disease though....
Erection angle
Stamina
Semen Quantity
Refractory time
Testostorone levels
Penile ejaculation control
Multiple orgasms before ejaculation
I suggest giving it a deep study and question everything before trying it.
Let me know what you think ....
Learn4life, thanks for responding with the sources for that information, and especially your advice to "question everything before you try it" I have stumbled onto the Lin website before and after some careful examination I rejected it as a commercial enterprise with lots of claims and no clinical studies, double-blind trials, or objective proof.
I require a pretty high level of convincing to layout money and effort. There are literally tens of thousands of people competing for my money with amazing claims from making my kids grow taller, to a pill that only makes a woman lose weight in the exact places she "needs" to lose inches.
If we have the necessary "big three" of:
large
double-blind studies
providing objective, measurable results –
then we have reason to conclude a treatment is likely to help. Even then, we may still have to be suspect of undiscovered or unreported side-effects, or results that are outside of the scope of the study; such as "long-term" etc. As we remove any of these critical three, we have to raise our level of suspicion.
With smaller double-blind studies for instance, we have to suspect that the sampling is not large enough to factor for a few atypical responses during the study. This can greatly skew the results and supply false conclusions.
With studies that are not blind we have a problem because the mind is such a powerful influence in evaluating results and actually changing the outcome. We know for example that a hypnotist can lay a coin in the hand of a suggestive person and plant the suggestion that the coin is hot with the result of an actual blister forming. With the mind having this level of control over physiological responses, any study that is not double-blind can easily, supply false data due to this placebo effect or researcher bias.
A study with no objective, measurable data, gives us nothing. Many of us perceive we are somewhat improved but can't provide any data that measures any exact improvement. With Peyronies Disease many don't even know their curve measurement at a given erection level. Reduce the erection by just a few percent and the deformity presents very differently.
When all three of these are removed: large, double-blind, objective measurable results, and we even remove "a formal study" from the equation, we are left with individual antidotal accounts that can be influenced by so many factors that conclusions are impossible.
At the extreme bottom is a commercial enterprise with a monetary interest in saying something while offering no evidence.
Clearly, with Peyronies Disease we have all been forced to either do nothing, or lower our level of evidence. The question becomes how far we will lower it. Unless a treatment is free of the look of a money making venture, and unless there is very little risk of side-effects, I like to stay near the top of this list.
Hawk:
That is a very informative post! It makes perfect logical sense. I agree with much of what you have said. However, it seems like we (Peyronies Disease patients) do not have the advantages of many large, double-blind studies that provide objective and measurable results available to us, in reference to Peyronies Disease treatments (are there any?). I can understand your caution and concern in trying questionable products or treatments. There are some scary treatments out there (penis stretchers, penis rollers, etc...) However, I can't fault anyone that tries unusual or alternative products that lack the studies you mentioned. I am not ashamed to admit I have used the VED, Infrared heat treatments, herbal supplements, and insane amounts of various vitamins, often armed with little more than a summary from Medline.
I do know that I had marble sized pieces of plaque that have been reduced to a pin head at most. I don't need a study to notice that and share it with you guys. However, you're right it does not mean crap! My Peyronies Disease could be self resolving. That also makes me wonder if this disease is even a descent candidate for those studies. That all said I do have to admit Dr Lin seems fishy as hell! However, if you feel it's working for you learn4life congratulations and keep it up! At least your spirits are high and you feel some control over this disease.
However, stay away from the penis stretches ;) thats going to far ;D
Joshua
Hey ! Thanks Hawk and Joshua for your response. Its awesome to be able to discuss on a forum with fellow Peyronies Disease members .... ;)
I have stumbled onto the Lin website before and after some careful examination I rejected it as a commercial enterprise with lots of claims and no clinical studies, double-blind trials, or objective proof.
(R)
Ok in response to this.
Careful examination meaning how extensively?
How long have you studied Dr.Lins work for ?
What specificaly have you rejected?
What exactly has no objective proof?
Dr.Lins work is very similar to Alan Ritz methods too. If you feel skeptical of Alan Ritz's work becauase it is similar to Dr.Lins
have a look at the feedback here :
http://www.amazon.com/gp/product/159800168X/qid=1133840369/sr=8-1/ref=sr_8_xs_ap_i1_xgl14/104-3896453-5763901?n=507846&s=books&v=glance
Surely with 63 good quality feedback at the rate of 4.5 out of 5 stars is something positive and genuine ? Especially
when it is in the sex catorgory..... One of the exercises in Alan Ritz's book "Multiple Orgasms without ejaculation"
can be done within a few minutes. This is not the kegel exercise that people rave about which only stimulates
the sympathetic system.
providing objective, measurable results – I dont think this is possible with Male Multiple Orgasms without
ejaculation... can anyone correct me ?
Alan ritz uses l-tyrosine for dopamine, l-ariginine/l-citruline for no, 5-htp for serotonin, choline for acetylcholine,
a multi-vitamin/mineral and whey protein amino acids, tribulus terrestris/hydroxyandrost-4-ene-6, 17-dioxo-3-thp ether
(3-ohat)/3, 7-diketo-androst-1,4,6-triene (atd) for testosterone and herbs from tcm tonics specialist ron teeguarden.
The difference is that Dr.Lin uses herbs to generate the same effects and much more. You dont have to buy Dr.Lins herbs.
The main point is that if ones body is lacking the above then it would impact the recovery of Peyronies Disease. After applying Alan Ritz's work
it has helped with Peyronies Disease alot !! Before you go on thinking Iam some kind of salesman for Alan Ritz or Dr.Lin please keep on reading as
I have a very good offer for you Hawk and Joshua ;D
I require a pretty high level of convincing to layout money and effort. (I dont blame you) ;D There are literally tens of thousands of people competing for my money with amazing claims from making my kids grow taller, to a pill that only makes a woman lose weight in the exact places she "needs" to lose inches.
In response to this (R)
It isnt just about taking a "Magic Pill" as clearly stated in Dr.Lin and Alan Ritz's work. It does require much more action than just
popping a few pills.
If money is the issue Hawk(Joshua as well as im being kind) ;)then I can do you a favor for helping me by being able to post on this forum.
I WILL BUY YOU BOTH ALAN RITZ'S BOOK
so that you have not laid out any money and test his theory and put it into practise.
In the whole book Alan Ritz does not link or suggest a specific herb or vitamin that he can profit from.
This is up to the reader to pursue and to choose from. THIS MEANS you wont feel presured
into buying more things from Alan Ritz ok??? !!! Well he does plug his second book a few times though ... :P
To be honest your Post Hawk overwhelmed me at first as I never did well with big words ;)
I can whole heartedley say Dr.Lin and Alan Ritz's work in the sexual related fields.
IF you want me to get all technical on it..... I cant ... I dont have the brainpower Professor !! :P
Try the Borage Oil/Starflower oil at first and you should notice some results.
Also I have already suggested doing a colon cleanse and I will suggest it again.
One can take the best nutrients, spend hundreds regularly, but barely 5-10% of the nutrition will pass through. I
t has helped intestinal diseases like gastritis, diarrhea, polyps, diverticulotis, colitis, Crohn's disease irritable bowel, etc.
Whoever reads the following below please answer to it !! OR ELSE I will send the chippendales on you .... eh what ??? ??? ;D
How many Bowel Movements are you having? What is/has your diet been like? Acohol drinking much?
What is the size of your waist? This is not just directed to Hawk btw so people step up to the plate ..now !! :P
If you do take the time to really get stuck into Dr.Lins work you will see
that it would be impossible for someone to just make all of this up.
IF there is something you feel fishy about or feel skeptical about then
just drop Dr.Lin an email about anything sexual related, he will be able to back it up.
I only know and remember bits and bobs ;)
This post isnt about me being right as my meaning is to remedy the situation.
I know this works and Iam willing to lay my money to help you guys.
Hope this helps.
It is now past 6:30am here in Scotland and I must head to my very missed bed !! ;D NN
Quote from: Joshua on December 07, 2005, 10:22:22 PM
Hawk:
That is a very informative post! It makes perfect logical sense. I agree with much of what you have said. However, it seems like we (Peyronies Disease patients) do not have the advantages of many large, double-blind studies that provide objective and measurable results available to us, in reference to Peyronies Disease treatments (are there any?). I can understand your caution and concern in trying questionable products or treatments. There are some scary treatments out there (penis stretchers, penis rollers, etc...) However, I can't fault anyone that tries unusual or alternative products that lack the studies you mentioned. I am not ashamed to admit I have used the VED, Infrared heat treatments, herbal supplements, and insane amounts of various vitamins, often armed with little more than a summary from Medline.
Joshua have you tried the Evening Promose Oil or Starflower oil on the penile tissues? It should be massaged twice a day with a spontanous erection if possible.
Morning time is the best when stress levels are low. Use the O fingers(Index and Thumb) to massage. It also helps if you can get to the point of ejaculation but dont ejaculate.
The prostagladin E1 synthesis will be produced even more if you take some fish oil and borage oil daily. 3000mg each. Best to split it so it can be fully absorbed.Im going to do the Vip massage and Vip exercise while using the infrared light so the Vip cream+borage oil can penetrate the scars+colagen deeper and also
to rejuvenate the near dead nerves. Wish me luck folks ! :)Quote from: Joshua on December 07, 2005, 10:22:22 PM
I do know that I had marble sized pieces of plaque that have been reduced to a pin head at most. I don't need a study to notice that and share it with you guys. However, you're right it does not mean crap! My Peyronies Disease could be self resolving. That also makes me wonder if this disease is even a descent candidate for those studies. That all said I do have to admit Dr Lin seems fishy as hell! However, if you feel it's working for you learn4life congratulations and keep it up! At least your spirits are high and you feel some control over this disease.
Thanks for the encouragement. I usually get flamed for the mentioning Dr.Lin. This is because people judge his website design rather than the actual context in the website.
Prostaglandin E-1 softens the penis to give it the more elastic feel and normal feel. Joshua, what exactly is fishy about Dr.Lins work ? Is their something that is wrong or doesnt make sense?Quote from: Joshua on December 07, 2005, 10:22:22 PM
However, stay away from the penis stretches ;) thats going to far ;D
lol !! I got Peyronies Disease from penis stretches and lots more so pleeeasse dont remind me :)
Learn4life:
I read you reply and enjoy the debate. Don't worry about getting flamed for your viewpoint. That rarely if ever happens here. I will reply in detail later. I am at work now.
Joshua
Awesome :) What do you work us Joshua ?
Cheers !
Learn4life,
You are both kind, and gracious to offer to buy a book for me. I can clearly see that you passionately believe in Dr. Linn products and his medical claims.
While I don't think there is any legitimate science or studies to support his claims, I think it would be tedious for most readers to see me answer point by point and then have you counter respond, especially to thirty different issue. This back and fourth would likely drift far a field from Peyronies Disease and oral treatments. I also have some concern that people often see a strongly stated objection to a message or a piece of evidence as an attack on the messenger. As an administrator of the forum, I try to avoid risking offense to other members.
Since my earlier post outlines the exact guidelines I use when considering if a claim is legitimate, I am satisfied to let that stand for now. If you apply those items one at a time to Dr Linn's website, you will see why I tend to dismiss his claims. I have no reason to think that your guidelines are the same as mine, so we will probably never agree, but at least you will see how I reach my conclusions.
Thanks again for your response.
We must all agree that from time to time we may disagree, that is the worth of this, and other forums. Debate is good and healthy, and if we are to achieve anything, debate is important in the mix of opinions.
Larry
Hiya !
I would appreciate if you could sort out the post to Joshua, Hawk.. if thats ok?
Its no problem to finish up on that subject but I wont be letting you guys of the hook that easy ;)
To Hawk and Joshua ... If you can PM me your home address so I can purchase the books for you
it would be much appreciated. Dont worry about me popping up at your house as Im half way across the
world in the Uk :)
Cheers !
update
nothin to knew, i actually am tryin the infrared light that joshua did, and i am doing this spray related to chelation therapy.
As far as the wogonin, I came across it as well and would like to hear if anything has developed success from tryin, as I will keep you posted on the chelation therapy, good luck all
Hi , I am new to forum. I have developed Peyronies Disease over the past 6 months . I am awaiting a consultants appointment but in the meantime am taking usual supplements.
I came across EDTA chelation supplement on the web which looked good has anyone tried this?
regards
Grant
I am currently trying it. I am trying the spray which cost me over 100 bucks, as usual. I will keep you updated. Good Luck
Came across this article...I'm sure some of you may have already seen it. Published recently, doesn't say anything much that is new but it seems to be a fairly comprehensive literature review:
http://amfar.mediwire.com/main/Default.aspx?P=Content&ArticleID=168333
Quote from: droberts10 on December 19, 2005, 01:42:14 PM
I am currently trying it. I am trying the spray which cost me over 100 bucks, as usual. I will keep you updated. Good Luck
I was interested in the whole chelation idea as the manufacturers claim it can break up fibrin deposits. www.life-enhancement.com. As I have a history of heart disease in my family I was looking into any possible link between Peyronies and other vascular probs. As this is only available in the US I wondered if any of you guys out there had used it or other Enzyme based fibrin busters such as Nattokinaise.
I have read that Peyronies Disease is linked to an enzyme problem in the blood that is also linked to Dupretens and trigger thumb.( both of which I have)
Cortong,
Happy holidays. I can chime in on the Nattokinase end. I did try it for about a month and a half or so - I took 60 pills worth. These were very small pills (only 50 mg each), so I would often take 3-4 a day. I noted no effect on the Peyronies Disease either in terms of plaque size or curve, although obviously I only took them for a short time and gave up.
One caution - I would say Nattokinase definitely has some effect on the blood. I got a bit light-headed the first time I took it, and this basically continued, although it lessenned over time. Nattokinase supposedly lowers blood pressure as well, so that may be it. I don't know as I don't have a monitor to check BP, but something was definitely up with the Nattokinase. I don't know if anyone else had the same happen, but I'd just say be sure to be careful.
Cortong,
Thanks for your post and your active support of the forum. You raise some important questions that I hope others will respond to. I post the following only as a fellow Peyronies Disease patient sharing what I think I have learned from continued study.
Keep in mind that Peyronies Disease plaque has nothing at all to do with deposits of anything. The terms "plaque" and "fibrin" cannot be correlated to other conditions like arterial plaque that have no slight similarities or connection to Peyronies Disease. Peyronies Disease plaque would be less confusing if we called it what it is really is, scar tissue. All scar tissue has some similarities. All conditions that fall under the catch-all phrase of "plague" do not. Peyronies Disease is scar tissue and is made up of collagen just as all other scar tissue. That is why Verapimil which is used on other scar tissue such as the skin, works to some degree on Peyronies Disease. The problem is getting it to the Peyronies Disease scar tissue. That is also why small intestine submucosa (SIS) works on Peyronies Disease, it works on all scar and wound repair. Peyronies Disease is the bodies natural scar formation gone hyper. Something triggers it and it gets no signal to stop. Even if there ever was a trauma, the scar traveled far beyond the original wound site.
When we ask if something is likely to work on Peyronies Disease, we have to ask if we think it is likely that it will work on other scar tissue, not if it would work on some other condition also referred to as plaque.
Thanks Hawk for puting me straight ( so to speak) I think I have been a bit confused by certain naturopath sites that have made a bit of as link between Peyronies Disease and other vascular probs. Thanks alot for taking the time to set up this site as its great to hear of other ideas , which I havent had from my doctor to date.
regards
Grant
I would be interested if anyone has used any of the treatment packs available from PDI which includes a DMSO treatment.
Glucosamine
I am developing arthritis in my fingers and it has been suggested that I take Glucosamine. In reading about this product, it states that it may actually re-grow cartilage. Not sure that this is going to be good in the Peyronies Disease area. Anybody have any experience / thoughts?
Happy holidays,
Jay
jay, reference your question about glucosamine. For those using topical verapamil, the directions say not to take glucosamine while on tv. It also mentions others not to take. Quote 'DO NOT TAKE SUPPLEMENTAL GLUCOSAMINE/CHONDROTIN, L-LYSINE, OR GREATER THAN 400MG SUPPLEMENTAL VITAMIN C PER DAY. Best regards, Mark.
This regimen seems to work really well:
Trental (3 x 400 mg)
Cialis (1 x 5 mg)
l-Arginine (5 g / day)
The idea is to combine inhibitors of PDE 4 and 5 with NO modulators (NO derived from iNOS counteract collagen deposition). Also, Trental acts as a TGF-B1 inhibitor (TGF-B1 is overexpressed in Peyronies Disease tissue). This treatmnet needs to be taken for at least 3 months before results will be obtained, but this drug combination is highly effective ( As a patient of Dr. Rajfer I take it myself). Also, frequent erections (1hr/day) help alot for the drugs to act.
Mike (PhD)
Here is the patent reference:
Methods of use of inhibitors of phosphodiesterases and modulators of nitric oxide, reactive oxygen species, and metalloproteinases in the treatment of Peyronie's disease, arteriosclerosis and other fibrotic diseases. Gonzalez-Cadavid, Nestor F.; Rajfer, Jacob. (Harbor-UCLA Research and Education Institute, USA). PCT Int. Appl. (2004), 141 pp.
Abstract
The methods and compns. of the invention are of use for treatment of conditions involving fibrosis, such as Peyronie's disease plaque, penile corporal fibrosis, penile veno-occlusive dysfunction, Dupuytren's disease nodules, vaginal fibrosis, clitoral fibrosis, female sexual arousal disorder, abnormal wound healing, keloid formation, general fibrosis of the kidney, bladder, prostate, skin, liver, lung, heart, intestines or any other localized or generalized fibrotic condition, vascular fibrosis, arterial intima hyperplasia, atherosclerosis, arteriosclerosis, restenosis, cardiac hypertrophy, hypertension or any condition characterized by excessive fibroblast or smooth muscle cell proliferation or deposition of collagen and extracellular matrix in the blood vessels and/or heart. In certain embodiments, the compns. may comprise a PDE-4 inhibitor, PDE-5 inhibitor, a compd. that elevates cGMP and/or PKG, a stimulator of guanylyl cyclase and/or PKG, a combination of a compd. that elevates cGMP, PKG or NO with an antioxidant that decreases ROS, or a compd. that increases MMP activity. In certain embodiments, the compn. may be a gene therapy vector.
Hi Hawk.. I am a new member.. 57 years old.. contracted Peyronies Disease about 5 months ago.. I am new to the forum.. I found an articel today that was posted by someone who was a pharmacist.. now I cant find it.. need help navigating.. Can you help me find this post???
Also, I just dropped over $1400 witha so-called Ed medical specialist in Winter Park Fl.. got me for a bunch of tests etc... However, I learned about him from this company ( see link) www.physion.com I went there thinking I had to to get this protocil, when in reality, any MD can write a script for it...
This protocol is new to the US.. from Italy.. I am about ready to order the system.. need prescription... I am wondering.. has anybody in the forum tried this system yet? If so.. would love to find thier results... They are saying that if you catch it in early stages.. that they have had as much as 50% and more curvature reduction... I am 35% curve...upwards however, today it was pulling to the left- semi hard.... I am scared to death..and have not been able to have sex.... I am hopeful for a cure.
Please let me know
Hopeful
Hopeful, Welcome to the forum and thanks for adding your support by posting. That is the only thing that makes this forum so successful.
If you notice the banner at the top, you will see a search button right under the map of South America. If you remember a good identifying word in the post you saw, then just enter it in search. It will show you all the posts containing that word regardless of what topic they were posted under or when they were posted.
If it was a recent post, you can go to the home page of this forum by hitting the home button right under the banner. Once on the main page, go to "Stats" near the bottom. Written in small font you will see "view the most recent posts" It will show you all the recent posts regardless of what topic they were posted under.
Don't panic about the Peyronies Disease. Life goes on, and if you keep a positive mental attitude you can find 98% of your life unaffected. Attitude is the key. The second thing is to learn about Peyronies Disease, work through the information and find the things that may help you hold or reverse this condition.
The website you posted is promoting low current electric delivery of topical Verapamil. Dcaptain, a solid contributing member of our forum is currently using this treatment. There may be others using it as well.
Good Luck
Quote from: learn4life on December 01, 2005, 02:31:23 PM
Hey Joshua ! Hows things? Peyronies Disease getting better?
Mine is getting abit better but to me it feels like alot !!
Im not sure if it is the Neprinol or the combination of the treatments ??
Anyways could you recommend a Vitamin E product to help with Peyronies Disease?
Does everyone here experience that Vit E helps with Peyronies Disease??
Things are fine, Thanks for asking. My Peyronies Disease is at a stand still ( no worse but no better ) I can live with that for now.
I suggest High Gamma Vit E (any brand) 400 mg a day.
Best of luck and I hope you keep seeing progress!!
Joshua
hey cortang, I have taken many of the products on PDI. I have been taking a multi V , MSM and Neprinol for some time now. I was also using the Thacker's formula at the same time and was having great success. The problem though is that the Neprinol is way to expensive ($150.00 a month). So I really need to decided what part has been working. I really can not keep spending this kind of money. So I stopped using the thacker's and continued with the supplements. Surprise the curve has begun to worsen. So my next step is to cut the dosage way back and start on the thacker's again. It seems as if that is the ticket and I may have been pissing my money away. Also I started using an unfiltered , non distiled, pure organic ACV and that made a huge difference.
Joshua:
Not all vitamin E is the same. In fact, only a few brands have the right combination of vitamin E isoforms (Vitamin E has 8 different isomers). Most brands only contain the alpha form which is not enough. You need also (at least) the gamma-form which is the most important form with respect to Peyronies. It is not only an anti-oxidant, but also has anti-inflammatory propreties (COX-2 inhibitor). The "normal" vitamin E (alpha-form alone) commonly found in stores is not effective.
Mike (PhD)
PS: And remember, Vitamin E needs to be taken with a meal because it's a fat-soluble vitamin. On an empty stomach it is hardly absorbed.
I agree that while all brands are not exactly same that any brand listed as a high gamma e is just as good and possibly better than a regular vit e.
I suggested a high gamma e.
Thanks
Joshua
Thanks Joshua for your helpful response.
So things still the same then ? :( Well heres something to try :)
I have been using one gel of Evening primose oil to massage into the scars.
After massaging for 5-10 mins I use Apple Cider Vinegar. I only use a small amount of
ACV(Organic) to massage the scars/collagen.
I have noticed a huge difference in the penile tissues now and also the feeling has gone
up. I suggest you give this a try :)
Let me know if your "up" for it heh heh .... Cheers !
P.S Dont put ACV before the oil as it can irritate the skin. Of course you know this.
P.SS Did you get my PM about the lamp for infrared Joshua?
Quote from: learn4life on December 27, 2005, 08:39:12 PM
Thanks Joshua for your helpful response.
P.SS Did you get my PM about the lamp for infrared Joshua?
Your welcome. No, I didn't get a pm from you regarding IR. Shoot it again or just post it in the alternative section. Thanks.
RE: your treatment, what made you decide to use acv? curious..
Hey Joshua,
Hows the holidays been for ya ? Enjoying the free time ?
Well I got ACV from the DMSO page on this forum... you know the
thackers formula :)
Iam still waiting for the DMSO to be delivered from the US and due to the
XMas period it is taking abit longer... but my ACV had arrived :)
Now I was thinking if ACV works to soften these scars and rejuvenate the penile nerves
when used with Gauze strips wrapped around the penis, would it help soften the scars if it was penile massaged ?
So I was feeling abit wild .... ;) and rubbed abit too much ACV onto my
twang ;) and Boy !! It stinged ROFL !! Ouch ..... ;D
So I quickly used Vip cream to take away this slight pain....
Anyways I noticed even though it stung it boosted my erection angle and
strength. Also I noticed the feeling on my knob was much higher which felt
amazing !! The penile tissues once massaged, it felt much softer and the resistance to expand the local tissues had lessened so my penile
expansion had furthured abit also.
From this lesson I use the vip cream+Primose oil first ;)
BUT
today I diluted the ACV with some water and then applied it onto my
Peyronies Disease affected Penis and it worked similarly without the sting.
You should reaaaally give it a try Joshua as it has worked wonders for me and hopefully you too.
Ok will drop you a Pm now.
Laters,
Cheers !
Hi, what is VIP cream ? cheers Grant
Quote from: cortong on December 29, 2005, 03:23:22 AM
Hi, what is VIP cream ? cheers Grant
Hey Grant ! Nice to meet ya :) A Scottish patient here :D
So how is it at your end ?
Vip cream is for penile, clitoral and G-spot massage and enlargement; Rejuvenate the mechanically-damaged nerves and tissues in the penis, clitoris and G-spot; Heating up the vaginal and erectile tissues for better sex and orgasm during sex.
How?
VIP Cream is formulated to promote prostaglandin E-1 synthesis in the local tissues and nerves in the penis, clitoris and G-spot under a warning condition during masturbation, intercourse or oral sex.
Pro E-1 attacks Collagen which in turn helps with Peyronies Disease.
The local tissues, blood vessels and nerves can erect very effectively when Vip is rubbed/massaged. The effect is that it has helped with my own collagen scarring and also rejuvenated some of the near dead nerves/arteries/veins etc
What does it contain?
It contains Deionied water ,Vitamin E, Zinc Oxide, L-lysine, Ginkgo Biloba Extract, Cajeput Oil, Tee Tree Oil, Benzoin Oil, Ginger Root Extract, Peppermint Extract, DHEA, Wild Yam, Isoflavones, Aloe Vera Gel, Honey, Oliver oil, Oregon Grape Extract, L-Arginine, Yohimbe Extract, Glyceryl Stearate, Peg-100 Stearate, Carbomer, Glycerin, Sodium Hydroxide, Sodium Edta.
Ok pressed the Enter button there by mistake 8)
So please .... let me finish ;D
One of the main purposes of Vip cream is anti-inflammation which has greatly helped myself due to often precum flooding and too much Prostaglandin E-2 building up which causes inflammation in the local penile area.
Why is it called "VIP Cream" ? - Vagina-Interacting-Penis cream.
If you use VIP Cream for lovemaking, you will see the increasing erectile size of the penis, clitoris and G-spot immediately. Dont believe me ? Try it ;D
Using VIP Cream during lovemaking is even more effective than using it alone.
The original idea of Vip cream was to enlarge the penis, clitoris and G-spot via lovemaking.
However, I myself have found it also helps repair the damaged tissues in the penis.
Now Iam adding Apple Cider Vinegar(ACV Organic) into my vip cream massages and seems to double/triple the effects of healing the nerves and softening the penile scars.
Once DMSO has arrived I will add this onto my Peyronies Disease treatment as DMSO will help carry the Vip cream+Borage oil(GLA)+ACV deeper into the penile tissues.
If DMSO does what it is intented to do then it should make this treatment even better to help with Peyronies Disease.
Also Iam looking for a lamp for a 250w Infrared bulb to add onto my massages.
I intend to do these massages with the treatment while under the infrared heat so it can fully penetrate right into the deep penile cyclinders/damaged uretha/Deep Arteries.
I expect after 3-6 months of these practises I should be 80-90% back to normal before Peyronies Disease since age 16 .
Hope this helps.
Cheers !
P.S If anyone wishes to try Vip Cream and has a partner then i suggest using it while lovemaking but use a screwing technique. The heat and the Pro E-1 from the vagina and also the ingriedients of Vip Cream, coupled with a screwing technique is considered to be the best way to heal the penile scars.
Went to GNC today and bought what seemed like everything they have! After reading all of the posts regarding oral regimens, reviewing the literature available on the internet, etc. I have decided upon the following plan:
Isomer E 400 twice a day
acetyl-l-carnitine 1000mg twice a day
alpha-lipoic acid 200mg twice a day
pyridoxine 200mg daily
Bromelain 500mg twice a day
The acetyl-l-carnitine comes combined with alpha-lipoic acid (500mg/200mg respectively), so I bought those as well as acetyl-l-carnitine 500mg alone to take to give me 1000mg acetyl-l-carnitine and 200mg alpha-lipoic acid twice a day. Can you believe the ALC alone cost more than the combo pill with ALA?!?
For the time being, I'm leaving the l-arginine and the lecithin out of the regimen but maybe someone out there can convince me to plug them in as well. There seems to be a place for them within the regimen for patients with significant plaque and ED. Right now, I'm only 4 months into this and seem to still be in the acute/inflammatory phase.
A three month supply of everything I listed up above cost me just a tad over 200 bucks with the gold card.
Just felt like sharing! I'll keep everyone posted as to how things go for the next three months. If anyone has any comments, suggestions or questions feel free!
I've seen wogonin pop up here and there in the Forum and was wondering if anyone had given it a try. I'm not sure if it is even available yet but if anyone has any new info please post.
Quote from: roadblock on December 30, 2005, 07:19:59 PM
Went to GNC today and bought what seemed like everything they have! After reading all of the posts regarding oral regimens, reviewing the literature available on the internet, etc. I have decided upon the following plan:
Isomer E 400 twice a day
acetyl-l-carnitine 1000mg twice a day
alpha-lipoic acid 200mg twice a day
pyridoxine 200mg daily
Bromelain 500mg twice a day
The acetyl-l-carnitine comes combined with alpha-lipoic acid (500mg/200mg respectively), so I bought those as well as acetyl-l-carnitine 500mg alone to take to give me 1000mg acetyl-l-carnitine and 200mg alpha-lipoic acid twice a day. Can you believe the ALC alone cost more than the combo pill with ALA?!?
For the time being, I'm leaving the l-arginine and the lecithin out of the regimen but maybe someone out there can convince me to plug them in as well. There seems to be a place for them within the regimen for patients with significant plaque and ED. Right now, I'm only 4 months into this and seem to still be in the acute/inflammatory phase.
A three month supply of everything I listed up above cost me just a tad over 200 bucks with the gold card.
Just felt like sharing! I'll keep everyone posted as to how things go for the next three months. If anyone has any comments, suggestions or questions feel free!
Hey Roadblock ! Me again .... :)
Thats exciting for you to try out this treatment plan.
I have read your posts via your profile section.
Have you tried any of the supplements before? If not its best not to buy 3 months supply as you are not 100% sure if they will help with your Peyronies Disease.
It would be financially better if you purchased say 1 months supply and noted the
results... BUT if your a rich man then its all good ;)
Roadblock do you experience monring erections? You can PM me instead.
How much spontaneous erectiosn do you have on average daily?
So your Peyronies Disease started of with penile base pain yea ? Do you have pain or scars there now?
Ok get back to me quick .... :) Pm is fine if this is not for everybodys eyes 8)
Cheers !
From Snowy Scotland !
I went with three months because I agree with Hawk from another post (I believe it was him) that it takes time to see any benefit. As long as I tolerate the meds I'll give it three months, especially since I'm early in the progression and something might be of benefit.
With regards to ED, recently I've seen a marked reduction in my ED which I believe was psychological to begin with. Plenty at night, although I avoid most things that might stimulate an erection these days, trying to get through the inflammatory/painful stage before I do much in terms of sexual activity.
To answer your question, this whole mess started with pain at the base. Over four months I have developed a slight curve at the base with some banding/wasting/whatever you want to call it in the semi-erect state that is gone with full erection. However, the banding is not near the base, it is in the center where there is no appreciable pain or nodules/plaques. I can't appreciate any plaques in or around the base, but I do have a few very small nodules (bb size) on the top near the glans in the midline. They don't seem to contribute to any angulation and are not particularly painful.
So, right now if I could take one thing away it would be the pain...I could live with everything else easily as it stands right now.
Quote from: roadblock on December 30, 2005, 09:59:41 PM
I went with three months because I agree with Hawk from another post (I believe it was him) that it takes time to see any benefit. As long as I tolerate the meds I'll give it three months, especially since I'm early in the progression and something might be of benefit.
How about adding a massage method? In my experience the actual direct contact with
some treatments used help attack Peyronies Disease much more effectively than just taking supplements. AND guess what ? CHEAPER TOO ;D
With regards to ED, recently I've seen a marked reduction in my ED which I believe was psychological to begin with. Plenty at night, although I avoid most things that might stimulate an erection these days, trying to get through the inflammatory/painful stage before I do much in terms of sexual activity.
So your still having PAIN!! I use to dread that part so bad !
Blood flow to the directed area should help but do you experience
Pain in the local penile area with every erection?
On a scale of 1-10 how painful is it ?
I ask this to determine if a massaging treatment would help or not.
To answer your question, this whole mess started with pain at the base. Over four months I have developed a slight curve at the base with some banding/wasting/whatever you want to call it in the semi-erect state that is gone with full erection. However, the banding is not near the base, it is in the center where there is no appreciable pain or nodules/plaques. I can't appreciate any plaques in or around the base, but I do have a few very small nodules (bb size) on the top near the glans in the midline. They don't seem to contribute to any angulation and are not particularly painful.
It started with Pain at the base = To determine if there is either penile damage or if the base is congested. Next time you have a hard erection please jump up and down without touching your penis at all. If you notice any slight pain on the base, please get back to me.
So, right now if I could take one thing away it would be the pain...I could live with everything else easily as it stands right now.
Hey Roadblock,
Can you let us know how you got penile damage?
Cheers !
What do you mean by congestion at the base?
I cannot recall a specific injury but there were a few times I bent a little bit funny during intercourse...I'm assuming this was when the damage was sustained.
Quote from: roadblock on December 30, 2005, 10:33:23 PM
What do you mean by congestion at the base?
Hey !
As in the blood has got trapped there maybe due to some mechanical/physical damage done at the base...
Ok I need to be brief Im afraid but will get back to you after work.
If the pain started just after from your bending during intercourse then most likely this has caused Peyronies Disease over the long run.
Also if you are avoiding things that can cause erections due to pain and inflammation then most likely due to the damage done and not much blood flow, I wonder if you have damaged nerves as well ?
Is the sensitivity still the same ?
When you urinate and ejaculate, do you experience pain? If so then most likely your uretha is also damaged.
If you can get back to me with the facts in this and the previous post, I think I could really offer some good guidance on what to do.
I myself suffered from Peyronies Disease since about 16 and depleted my bodys sexual functions/neurotransmitters from over masturbating since age 11.
I suffered from impotence/ED and even lost some size during my suppose to be peak years(Teens)
Iam seeing much improvement now but it hasnt been easy especially during the years of when Iam suppose to be at my best.
Hope this helps.
Cheers !
I am taking the following combination of drugs and I see definately improvements:
3 x 400 mg Trental
1 x 2.5 mg Cialis
5 x 1 g l-Arginine
These drugs were prescibed to me by my urologist (Dr. Rajfer/UCLA, one of the leading experts in Peyronies Disease)
In addition, I take the following supplements daily, all with food:
2 x 1 g acetyl-l-carnitine
1 x 400 IU Vitamin E + 300 mg gamma Vit E (Solary: Bio E Gamma Plex)
2 x 120 mg Coenzyme Q10
1 x 1.2 g Ester-C
1 x Multi-Vitamin (including 200 myg Selenium)
I am on this regimen since 2 months and I see allot of improvement (plaque size reduced, bending reduced from 50 degrees to about 20 degrees).
It is VERY important to have frequent erections (about 1 hour total during the day, achieved by masturbation, but not by intercourse) to increase the blood flow in the penis and to elavate the cGMP level.
I can highly recommend this treatment plan. Just remember to take the medications with food.
Mike (PhD)
One more thing:
I highly recomend to consulat an urologist, who is experienced in Peyronies Disease, and not to take matters in own hands. Many treatments (DMSO etc..) I have read on this forum lack proper clinical safety and efficacy studies, and might result in great harm. Remember, with whatever you do, it has to be safe and supervised by an urologist. Also, all medications and supplements have their side effects (especially when taken all together), and while taking these medications your blood should be frequently checked to make sure your body tolerates all that.
Peyronies Disease can cause allot of disterss, and only a few urologist are experienced in this field. But Only a well designed treatment plan can bring help, not some weired "do it yourself" methods which I have read on this forum.
Mike (PhD)
Why would you recommend masturbation over intercourse?
I consider masterbation at least a rough as intercourse and foreplay, less satisfying, and more stressful to a relationship.
I do think extra lubrication for intercourse could be helpful for men with high degree curves. I noticed when my curve was at ist worse that a good lubricant helped prevent truama.
Joshua
P.S Happy New Year to everyone!
Usually masturbation causes less trauma on the plaque than intercourse (that's what my dr said). He said that frequent erections is of great benefit for Peyronies Disease (increased blood flow, elevated cGMP and NO (anifibrotic !). But intercourse often increases pressure on the plaque and causes further inflammation. he said to use plenty of lubricant.
Mike
I am on my second bottle of the chelation therapy spray. I do want to stay on it for a while before I give a recommendation to try it for the 100 bucks a bottle that it costs. There are so many things that we have tried that sometimes we fool ourselves that things are getting better when they are not. But I am still upbeat about the product and hope that it will improve my condition. I should say that I added cialis to the treatment.
I will continue to keep you posted, GOOD LUCK ALL!!!!!!!!!!
Hey guys,
I added Gotu Kola to my regimen today. For everything I'm taking (see earlier post in "Oral Treatments") I've been able to find reasonable data on different university websites, medical sites, etc. which makes me feel that at least there may be some reason to believe they will do something along the lines of what they are proposed to do. If Gotu Kola is used medically to improve wound healing and reduce scarring as well as increase blood flow to areas of inflammation, guess I'll give it a shot.
As always, I'll keep everyone posted! Hope everyone is having a good New Year so far and welcome to all of the new members!
Mastrubation is constant repetition on the same area - likely causing mini trauma on the same area -- then causing plaque in that area, whereas with intercourse there is some variety, and unlikely to hit exact same area everytime you have intercourse. IMO
Steven
The more we delve into Peyronies Disease, the more difficult it seems to come by an official answer. If you ask 10 world-renowned Peyronies Disease docs the same question, you'll get 10 different answers. I've seen at least four different answers to the masturbation/no masturbation query. ("Don't do it, you'll make the problem worse!".... "Fine, do it... but be VERY cafeful!"... "Jerk off to your heart's content, it will make no difference in your condition!".... "Masturbation is NECESSARY to curing Peyronies Disease. It makes your penis healthier!" et al.)
The same reasoning can be applied, by extension, to sexual intercourse.
The same holds true with respect to VEDs. Last month I had a visit to Dr. Mulhall in NYC for a follow-up on the completion of my verapamil injections. He gave me a prescription for a VED, upon my request, but cautioned that, in his view, a VED is of no use in treating Peyronies Disease. He stated this not as a matter of opinion, but as a settled fact.
Now, I read more recently that his friend and colleague, Chicago's Dr. Levine, has a completely different take on VEDs....
More food for thought.
Bob
Bob:
I will answer your post under the VED topic, so please go there for my reply to you.
Old Man.
Quote from: learn4life on December 29, 2005, 08:47:36 PM
Where can you buy this VIP cream ? Ive some some organic ACV so i'll give it a go. I have been on all the vits for a 2months and whilst it hasnt got any worse its not improve. My abnormal curve suddenly appeared after a long period with no activity due to work pressures so there must be a lot to say for a daily hard on.
regards
Grant
Quote from: cortong on January 06, 2006, 07:51:21 AM
Quote from: learn4life on December 29, 2005, 08:47:36 PM
Where can you buy this VIP cream ? Ive some some organic ACV so i'll give it a go. I have been on all the vits for a 2months and whilst it hasnt got any worse its not improve. My abnormal curve suddenly appeared after a long period with no activity due to work pressures so there must be a lot to say for a daily hard on.
regards
Grant
Hey Grant, are you adding ACV with the Fish oil massage ?
Also did you manage to find the above posts regarding Vip Cream?
Im confident that if you do daily massages with Evening Oil/Fish oil plus ACV you should see a reducement from your curve.
Be patient as it could take several days to weeks to see improvement.
If you have damaged the deep nerves/arteries/veins of your penis then rejuvenation will take several months.
It depends on how much damage has been done ... Is it just the 1 scar or or is it all over ?
Do you experience inflammation ? Do you experience pain from normal erections?
Cheers and hope this helps !
P.S Remember that daily blood flow plus prostaglandin E-1 and Nitric Oxide will dissolve the penile colagen scars IF it can get into the penile scars !
Just wanted to post some early results. After beginning the regimen I posted previously on 12/30/05 (that is the date I began the regimen), today I can say that for the first time my pain has been reduced about 80%!
This happened in one week...prior to beginning the medicines I had little to no change (more like a fluxuation) over 3 months. I realize that the accepted prognosis of Peyronies Disease is that pain will resolve in almost all cases in 6-15 months, which I read on many websites. However, I would find it hard to accept as coincidence the swift resolution of pain immediately after beginning these meds.
I also would reject that it is a placebo effect. I had no such effect when I began taking Vitamin E. Also, a subjective decrease in pain secondary to a placebo effect I would expect to be fairly immediate. I didn't notice a change until yesterday and moreso today, about a week after the beginning of the regimen.
Now with all that said my pain is not entirely gone, but I am hopeful. I didn't expect any immediate results, but am pleased so far. I am going to continue the current regimen for the three months as I stated, and I am hopeful that I will continue to experience beneficial results from these medicines.
I should add that I have added Gotu Kola to the regimen I previously posted, one tablet a day in the evening (I believe it is 500 mg). In fact, I will re-post my regimen so that anyone interested can view it. It is interesting that I have experienced a marked resolution in pain over 48 hours ago...and I started the Gotu Kola 48 hours ago! It wouldn't be responsible to correlate these two things, although it is noteworthy. Gotu Kola is supposed to be helpful in wound healing and decreasing scar formation. I found it interesting that in the research cited (granted, nothing specific was mentioned so I take it all with a grain of salt) increased levels of Gotu Kola was found in inflammatory tissues. Could it be that it also helps to increase the delivery of the other supplements to the inflamed areas as well? Hard to say.
I can't tell you specifically which of the medications are of the most benefit, but if I had to get rid of all but one of these, I'd hold onto the acetyl-l-carnitine which is receiving attention from reputable websites (i.e. not trying to sell anything) including the most recent report on emedicine. Of course, many of you have read the study head to head of acetyl-l-carnitine vs tamoxifen. Although it was a small study and I wasn't able to read the entire publication, the abstract seemed very positive, especially with regards to the statistically significant improvement in curvature, pain and plaque size not only before and after in the acetyl-l-carnitine group, but when compared with the relative improvement in the tamoxifen group. One thing I would be worried about in a study as small as this is that if these guys are anything like us, they are taking handfuls of everything they can find to improve their situation which might confound the data. Now certainly, the investigators would have the participants agree to not take anything else OR at least all be on Vit E, etc...some type of standardizations. But a certain number will inevitably take something else which might taint the results.
I want to add one more thing, since the majority of my focus on this forum as well as in my current treatment of my Peyronies Disease is the oral treatments. I never was a big proponent of herbal treatments. As a medical professional, I am always skeptical when there is limited science behind any claim. But having limited medical options for Peyronies Disease treatment, I turned to alternative treatments and kept an open mind. I would like to think that with the help of the members of this forum as well as my own research I have found reasonable options. They are providing me with hope as long as I keep reasonable expectations.
But I want to make two points with regards to alternative and herbal treatments while I'm thinking about it...
1) Always be skeptical when reading about a new product. If you can only buy it on one website and they are making outrageous claims, these are not good signs! Think about it...as you read the posts there are a handful of members who have been dealing with Peyronies Disease for many years, who are well-read, reasonable people with open minds to new treatments. If there was a miracle cure out there, wouldn't we all be on it? It's unfortunate the thousands of individuals and websites selling worthless products to vunerable individuals with difficult medical problems.
2) Any and all of these medications have toxicities and side-effects, even if they are not provided. The reason they are not provided is because these products are not regulated by the FDA so they are not required. We all take these pills at our own risk! They might interfere with the metabolism/excretion of other prescription meds, so make sure to provide a list to any physician who is treating you!
Again, just posting to update you all on one patient's struggle. Look forward to reading more from everyone else, especially the new members!
Quote from: roadblock on January 06, 2006, 01:39:39 PM
Just wanted to post some early results. After beginning the regimen I posted previously on 12/30/05 (that is the date I began the regimen), today I can say that for the first time my pain has been reduced about 80%!
This happened in one week...prior to beginning the medicines I had little to no change (more like a fluxuation) over 3 months. I realize that the accepted prognosis of Peyronies Disease is that pain will resolve in almost all cases in 6-15 months, which I read on many websites. However, I would find it hard to accept as coincidence the swift resolution of pain immediately after beginning these meds.
I also would reject that it is a placebo effect. I had no such effect when I began taking Vitamin E. Also, a subjective decrease in pain secondary to a placebo effect I would expect to be fairly immediate. I didn't notice a change until yesterday and moreso today, about a week after the beginning of the regimen.
Now with all that said my pain is not entirely gone, but I am hopeful. I didn't expect any immediate results, but am pleased so far. I am going to continue the current regimen for the three months as I stated, and I am hopeful that I will continue to experience beneficial results from these medicines.
I should add that I have added Gotu Kola to the regimen I previously posted, one tablet a day in the evening (I believe it is 500 mg). In fact, I will re-post my regimen so that anyone interested can view it. It is interesting that I have experienced a marked resolution in pain over 48 hours ago...and I started the Gotu Kola 48 hours ago! It wouldn't be responsible to correlate these two things, although it is noteworthy. Gotu Kola is supposed to be helpful in wound healing and decreasing scar formation. I found it interesting that in the research cited (granted, nothing specific was mentioned so I take it all with a grain of salt) increased levels of Gotu Kola was found in inflammatory tissues. Could it be that it also helps to increase the delivery of the other supplements to the inflamed areas as well? Hard to say.
I can't tell you specifically which of the medications are of the most benefit, but if I had to get rid of all but one of these, I'd hold onto the acetyl-l-carnitine which is receiving attention from reputable websites (i.e. not trying to sell anything) including the most recent report on emedicine. Of course, many of you have read the study head to head of acetyl-l-carnitine vs tamoxifen. Although it was a small study and I wasn't able to read the entire publication, the abstract seemed very positive, especially with regards to the statistically significant improvement in curvature, pain and plaque size not only before and after in the acetyl-l-carnitine group, but when compared with the relative improvement in the tamoxifen group. One thing I would be worried about in a study as small as this is that if these guys are anything like us, they are taking handfuls of everything they can find to improve their situation which might confound the data. Now certainly, the investigators would have the participants agree to not take anything else OR at least all be on Vit E, etc...some type of standardizations. But a certain number will inevitably take something else which might taint the results.
I want to add one more thing, since the majority of my focus on this forum as well as in my current treatment of my Peyronies Disease is the oral treatments. I never was a big proponent of herbal treatments. As a medical professional, I am always skeptical when there is limited science behind any claim. But having limited medical options for Peyronies Disease treatment, I turned to alternative treatments and kept an open mind. I would like to think that with the help of the members of this forum as well as my own research I have found reasonable options. They are providing me with hope as long as I keep reasonable expectations.
But I want to make two points with regards to alternative and herbal treatments while I'm thinking about it...
1) Always be skeptical when reading about a new product. If you can only buy it on one website and they are making outrageous claims, these are not good signs! Think about it...as you read the posts there are a handful of members who have been dealing with Peyronies Disease for many years, who are well-read, reasonable people with open minds to new treatments. If there was a miracle cure out there, wouldn't we all be on it? It's unfortunate the thousands of individuals and websites selling worthless products to vunerable individuals with difficult medical problems.
2) Any and all of these medications have toxicities and side-effects, even if they are not provided. The reason they are not provided is because these products are not regulated by the FDA so they are not required. We all take these pills at our own risk! They might interfere with the metabolism/excretion of other prescription meds, so make sure to provide a list to any physician who is treating you!
Again, just posting to update you all on one patient's struggle. Look forward to reading more from everyone else, especially the new members!
Good Post Roadblock :)
Iam glad you are getting much better and down 80% pain in a short time span of 1 week !
So is their any other herbs that are similar to Gotu Kola and its effects?
learn4life,
I'm not sure what you mean...many of the herbal remedies, even if they do what they report to do, do so via unknown mechanisms. That is to say, there don't seem to be "classes" of drugs like you have in traditional medicine. For example, Lipitor and Zocor are "statins" but although they have similar actions and may indeed be similar molecules, might have slightly different efficacies due to differences in absorption, lipid solubility, penetrance and activitiy at the receptor sites. However, from what I know many herbals are ground up plants or in which the active ingredient often isn't even identified. All that is known is that people have been eating such and such a plant and report that they have had some benefit.
The upside of that is for the most part, many people have taken it and if there are side effects they are well known. Of course the downside is that there is no way to scientifically correlate the herbal with the effect without removing all other variables as best we can. Gotu Kola, for example, has many reported effects but I was not able to find anything discussing the actual mechanism of action. It also listed "tumor growth" as a possible side effect. No idea how that was established but we all should take these types of cautions seriously because without a study behind it I assume that there were pretty significant numbers to support that statement!
One more thing...just remember that anytime we take anything that has a biochemical effect on the body, it certainly can be having effects in many other places that we are unaware of at this time...and not always good effects. The rule in medicine is as few medications as possible to reach the desired effect. We, the patients with Peyronies Disease, must weigh the risk vs benefit of any unproven treatment. It's a risk...but a risk many of us are more than willing to take because Peyronies Disease is a pretty big issue for most of us.
I'm by no means an herbal expert...these are just my opinions and observations.
Quote from: roadblock on January 06, 2006, 04:21:57 PM
learn4life,
I'm not sure what you mean...many of the herbal remedies, even if they do what they report to do, do so via unknown mechanisms. That is to say, there don't seem to be "classes" of drugs like you have in traditional medicine. For example, Lipitor and Zocor are "statins" but although they have similar actions and may indeed be similar molecules, might have slightly different efficacies due to differences in absorption, lipid solubility, penetrance and activitiy at the receptor sites. However, from what I know many herbals are ground up plants or in which the active ingredient often isn't even identified. All that is known is that people have been eating such and such a plant and report that they have had some benefit.
The upside of that is for the most part, many people have taken it and if there are side effects they are well known. Of course the downside is that there is no way to scientifically correlate the herbal with the effect without removing all other variables as best we can. Gotu Kola, for example, has many reported effects but I was not able to find anything discussing the actual mechanism of action. It also listed "tumor growth" as a possible side effect. No idea how that was established but we all should take these types of cautions seriously because without a study behind it I assume that there were pretty significant numbers to support that statement!
One more thing...just remember that anytime we take anything that has a biochemical effect on the body, it certainly can be having effects in many other places that we are unaware of at this time...and not always good effects. The rule in medicine is as few medications as possible to reach the desired effect. We, the patients with Peyronies Disease, must weigh the risk vs benefit of any unproven treatment. It's a risk...but a risk many of us are more than willing to take because Peyronies Disease is a pretty big issue for most of us.
I'm by no means an herbal expert...these are just my opinions and observations.
You mentioned the effects of the herb. Although you are not sure if it was the herb that caused it :I should add that I have added Gotu Kola to the regimen I previously posted, one tablet a day in the evening (I believe it is 500 mg). In fact, I will re-post my regimen so that anyone interested can view it.
It is interesting that I have experienced a marked resolution in pain over 48 hours ago...and I started the Gotu Kola 48 hours ago! It wouldn't be responsible to correlate these two things, although it is noteworthy. Gotu Kola is supposed to be helpful in wound healing and decreasing scar formation. I found it interesting that in the research cited (granted, nothing specific was mentioned so I take it all with a grain of salt) increased levels of Gotu Kola was found in inflammatory tissues. Could it be that it also helps to increase the delivery of the other supplements to the inflamed areas as well? Hard to say.
Do you take any other herbs ? Why did you decide to choose this specific one without proven studies?
I had seen Gotu Kola mentioned on this website, and looked for more info on the internet. Since many herbs are not FDA regulated and not prescription, sometimes it is hard to find good info. However, if legitimate medical websites (i.e. websites not attempting to sell the herb) are providing information, they would not do so unless the statements are true to a reasonable degree based on what is known by the medical community.
http://www.umm.edu/altmed/ConsHerbs/GotuKolach.html
Now, just because a substance is reported to aid in wound healing and increase concentration of antioxidants in inflamed tissue does not mean it will do anything for Peyronies Disease...but then again maybe it will. Certainly, most of us are on Vitamin E and other meds for Peyronies Disease...could Gotu Kola aid in the delivery of these substances to the tissues we are targeting? It is possible. The tunica albuginiea does not receive a direct blood flow and therefore it is difficult for substances to reach it. This is also a big reason why a sprained ankle heals in days to weeks while Peyronies Disease pain resolves in "6-15 months from onset" according to most urologists.
So, ultimately, I think it is a a very reasonable addition to any Peyronies Disease regimen when taken as directed, observing the contraindications and precautions mentioned.
I have seen wogonin mentioned on this site...anybody have any experience with it?
Also, most of the stuff I have been taking I get from GNC but I am open to suggestions if members have had a good experience with any online dealers.
roadblock
Having searched high and low in the local health shops I cant seem to find vit e with gamma. Does anyone out there know of an internet supplier ?. I was a bit concerned to find out that to much alpha can actually suplant the gamma in your system which as the gamma is supposed to be the one that does Peyronies Disease most good is a worry.
I ordered some from www.puritan.com about 2 months back. The site is also has a pretty good nutritional information section.
Specifically, I think this will take you directly to the Gamma E
http://www.puritan.com/pages/file.asp?xs=BF5172BAFB80472291F15754BD17C9ED&PID=4414&CPID=6898&np=1
has anyone tryed COXFREE ?
Quote from: Davidw on November 06, 2005, 01:07:42 PM
Had a chance to read through this enitre thread and found one mention of Potaba. It was not a positive statement - does anyone have something else to say about it/ did anyone take it for 3 months? If i continue with it I have to have the prescription rewritten - it was written for 200 pills which will only last 7/8 days at a cost of $60.00... yikes!
My Doc, who uses TV for his Peyronies Disease patients, says that Potabo works and is about the same cost as TV. I do not know if the has personal experience prescribing Potabo.
August,
I have NO knowledge of pototaba but I have a negative impression based on the little I have heard. I have not heard enough to have an intelligent opinion however. My understanding is that you can get a generic form much cheaper from places such as Hope pharmacueticals. If it doesn't help, the fact that it is cheaper is certainly no bargin. If you are committed to taking it, I guess cheaper is better.
If you click of search right under the map pf the globe at the top of this page, then type in potaba, you will see there are several other referrences to potaba scattered through the forum.
Like you, I would be looking for conclusive clinical studies, or at least a significant pattern of patients giving positive first hand reports. If you find and solid information, let us know.
Good luck
does anyone know if COXFREE works
Quote from: peter on January 21, 2006, 03:47:58 AM
does anyone know if COXFREE works
Peter I have never heard a discussion on coxfree, I have only a guess what it would be. I did a very quick search on the web and found no obviious link. If coxfree is as it sounds, a cox2 inhibitor, they do reduce inflamation. I was on Zyflamend (Natural Cox2 Inhibitor) that is recommended by Columbia University's Holistic Urology Department for supressing prostate cancer cell proliferation. Any Cox2 inhibitor will generally reduce inflamation which is an underlying element in many conditions. I have no indication that it had any impact on my Peyronies Disease, especially since I got Peyronies Disease while I was taking it.
I personally don't think there is anything that "Works" in the sense that it reliably cures or stops Peyronies Disease. I think there are some things that can have a positive impact in some people. I never got an impression that a Cox2 inhibitor had any impact on my Peyronies Disease.
If Coxfree is something other than a Cox2 inhibitor, please fill us in.
Peter,
The ingredients in coxfree are natural and at worse they are harmless. A two month's supply costs about forty dollars so do what I did and order a couple of bottles and see if it works.
Cheers.
http://www.vitaminusa.com/coxfr60tavi.html
My concern would be the MSM and Collagen. That along with vitamin C and L-lysine are the building blocks that spur collagen production. I have mentioned before that I have seen medical warnings by a few medical doctors, for Peyronies Disease patients to avoid collagen producing supplements . Keep in mind the investigative drug that holds some hpe AA4500 works by breaking down collagen. Also consider that there are many types of collagen in the body. Over deposits of inflexible collagen is in fact what Peyronies Disease is. Collagen types in cartilage are not elastic.
yesterday I used the search feature and stumble accross a very interesting post by Mark501 under this topic that I had missed. It supports the warning against collagen producing supplements.
Quote from: mark501 on December 23, 2005, 03:42:55 PM
jay, reference your question about glucosamine. For those using topical verapamil, the directions say not to take glucosamine while on tv. It also mentions others not to take. Quote 'DO NOT TAKE SUPPLEMENTAL GLUCOSAMINE/CHONDROTIN, L-LYSINE, OR GREATER THAN 400MG SUPPLEMENTAL VITAMIN C PER DAY. Best regards, Mark.
Zyflamend is an all natural Cox2 inhibitor without the MSM and collagen.
http://www.costlessvitamins.com/store/stores/CostlessVitamins/Browse_Item_Details.asp?Item_ID=190&Shopper_id=77711211751427771
I make no claim that it does anything for Peyronies Disease
what about enzymes? i heard a product called wobenzyme N helps,is that true?
Can you please tell me what is VIP creme.. and where can you get it? Also what is ACV ( Apple Cider Vinegar)??? and how are you applyiong fish oil.. any response yet..
Hopeful
Quote from: learn4life on January 06, 2006, 01:18:47 PM
Quote from: cortong on January 06, 2006, 07:51:21 AM
Quote from: learn4life on December 29, 2005, 08:47:36 PM
Where can you buy this VIP cream ? Ive some some organic ACV so i'll give it a go. I have been on all the vits for a 2months and whilst it hasnt got any worse its not improve. My abnormal curve suddenly appeared after a long period with no activity due to work pressures so there must be a lot to say for a daily hard on.
regards
Grant
Hey Grant, are you adding ACV with the Fish oil massage ?
Also did you manage to find the above posts regarding Vip Cream?
Im confident that if you do daily massages with Evening Oil/Fish oil plus ACV you should see a reducement from your curve.
Be patient as it could take several days to weeks to see improvement.
If you have damaged the deep nerves/arteries/veins of your penis then rejuvenation will take several months.
It depends on how much damage has been done ... Is it just the 1 scar or or is it all over ?
Do you experience inflammation ? Do you experience pain from normal erections?
Cheers and hope this helps !
P.S Remember that daily blood flow plus prostaglandin E-1 and Nitric Oxide will dissolve the penile colagen scars IF it can get into the penile scars !
Fairly new member- have Peyronies Disease for about 6-7 months now.. am trying to think and research out of the box.. as I do not trust any of the so-called Peyronies Disease specialist.. as I have been to (3) thus far and each one has a different remedy.. plus I feel that the so-called ED specialist are just SCAMS.. whatever.. $1400 out of pocket so-far...
I have done research on Iontophoresis.. according the company and the one doc that I went to that they are having a 50% improvement rate ( average) which I would be delighted especially at a 35% bend.. have not ordered yet from Physion www.physion.com $1,000 for the device plus 30- applications of Verapimil- have heart arthymia.. and was concerned about Verapimil.. and have learned when applied via Ionoto.. that it does not become systemic...
I am a big believer in Enzymes...however, due to the nature of the disease ( scar tissue) I felt that taking enzymes orally would take forever and began looking into an enzyme creme that could be delivered via Ionotophoresis.. I approached one of the largest enzyme manufactures.. they formulate for just about everyone including the high-priced Neprinol... with my theory.. they got back to me and introduced me to a small company that has been making a creme and has been using it to treat Lymhodema... it has worked.. I introduced the company to Peyronies Disease.. their treatment eats or destroys the fibrous tissue.. which is the main thing for Peyronies Disease...
Clinical Trial- I told them that I want to try and organize a small clinical trial with myself and some other Peyronies Disease patients under the supervision of a medical professional....would you be interested as a medical professional???
They want me to start applying it topically.. as my main idea was to apply it using Ionotophoresis ( need to have study done to see if it can be delivered this way ) and/or through a needlesless injection ( a new syringe that uses pressure instead of a needle) more on this later...
Your comments please
Hopeful
quote author=roadblock link=topic=22.msg1684#msg1684 date=1136572779]
Just wanted to post some early results. After beginning the regimen I posted previously on 12/30/05 (that is the date I began the regimen), today I can say that for the first time my pain has been reduced about 80%!
This happened in one week...prior to beginning the medicines I had little to no change (more like a fluxuation) over 3 months. I realize that the accepted prognosis of Peyronies Disease is that pain will resolve in almost all cases in 6-15 months, which I read on many websites. However, I would find it hard to accept as coincidence the swift resolution of pain immediately after beginning these meds.
I also would reject that it is a placebo effect. I had no such effect when I began taking Vitamin E. Also, a subjective decrease in pain secondary to a placebo effect I would expect to be fairly immediate. I didn't notice a change until yesterday and moreso today, about a week after the beginning of the regimen.
Now with all that said my pain is not entirely gone, but I am hopeful. I didn't expect any immediate results, but am pleased so far. I am going to continue the current regimen for the three months as I stated, and I am hopeful that I will continue to experience beneficial results from these medicines.
I should add that I have added Gotu Kola to the regimen I previously posted, one tablet a day in the evening (I believe it is 500 mg). In fact, I will re-post my regimen so that anyone interested can view it. It is interesting that I have experienced a marked resolution in pain over 48 hours ago...and I started the Gotu Kola 48 hours ago! It wouldn't be responsible to correlate these two things, although it is noteworthy. Gotu Kola is supposed to be helpful in wound healing and decreasing scar formation. I found it interesting that in the research cited (granted, nothing specific was mentioned so I take it all with a grain of salt) increased levels of Gotu Kola was found in inflammatory tissues. Could it be that it also helps to increase the delivery of the other supplements to the inflamed areas as well? Hard to say.
I can't tell you specifically which of the medications are of the most benefit, but if I had to get rid of all but one of these, I'd hold onto the acetyl-l-carnitine which is receiving attention from reputable websites (i.e. not trying to sell anything) including the most recent report on emedicine. Of course, many of you have read the study head to head of acetyl-l-carnitine vs tamoxifen. Although it was a small study and I wasn't able to read the entire publication, the abstract seemed very positive, especially with regards to the statistically significant improvement in curvature, pain and plaque size not only before and after in the acetyl-l-carnitine group, but when compared with the relative improvement in the tamoxifen group. One thing I would be worried about in a study as small as this is that if these guys are anything like us, they are taking handfuls of everything they can find to improve their situation which might confound the data. Now certainly, the investigators would have the participants agree to not take anything else OR at least all be on Vit E, etc...some type of standardizations. But a certain number will inevitably take something else which might taint the results.
I want to add one more thing, since the majority of my focus on this forum as well as in my current treatment of my Peyronies Disease is the oral treatments. I never was a big proponent of herbal treatments. As a medical professional, I am always skeptical when there is limited science behind any claim. But having limited medical options for Peyronies Disease treatment, I turned to alternative treatments and kept an open mind. I would like to think that with the help of the members of this forum as well as my own research I have found reasonable options. They are providing me with hope as long as I keep reasonable expectations.
But I want to make two points with regards to alternative and herbal treatments while I'm thinking about it...
1) Always be skeptical when reading about a new product. If you can only buy it on one website and they are making outrageous claims, these are not good signs! Think about it...as you read the posts there are a handful of members who have been dealing with Peyronies Disease for many years, who are well-read, reasonable people with open minds to new treatments. If there was a miracle cure out there, wouldn't we all be on it? It's unfortunate the thousands of individuals and websites selling worthless products to vunerable individuals with difficult medical problems.
2) Any and all of these medications have toxicities and side-effects, even if they are not provided. The reason they are not provided is because these products are not regulated by the FDA so they are not required. We all take these pills at our own risk! They might interfere with the metabolism/excretion of other prescription meds, so make sure to provide a list to any physician who is treating you!
Again, just posting to update you all on one patient's struggle. Look forward to reading more from everyone else, especially the new members!
[/quote]
hopeful, I've seen the abstract of the study on Acetyl-L Carnitine vs. Tamoxifen. The thing that I notice is that the amount of improvement they're claiming is so small as to be almost insignificant. From the average values given you can infer that many in the study group had curvature so slight that it probably fell within the range of normal. And the amount of improvement was so small that I question the measurement techniques. In short I think they took a bunch of guys with very mild Peyronies Disease - if indeed it was Peyronies Disease at all - convinced themselves that things were 10% better on average after ALC and called it a success.
I've seen a number of guys post that they've taken ALC for extended periods with no improvement noticed.
There does seem to be serious research interest in ALC for other reasons, but nothing I've read suggests it would have any effect on fibrosis.
Hey guys, here's one for you. I found the following article on the PubMed site:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16430041&query_hl=1&itool=pubmed_docsum
Did a little digging and found that these Urologists have done four studies on the use of "propoleum" for Peyronies Disease. However, I have no idea what propoleum is, and haven't been able to find it online. The article abstracts are in Spanish, translated to English, so I'm going with what the abstract says.
Anyone know of this propoleum?
Quote from: dcaptain on January 25, 2006, 10:17:38 PM
However, I have no idea what propoleum is, and haven't been able to find it online....Anyone know of this propoleum?
It seems that it is bee propolis (the glue honey bees produce/process from plants). Maybe it is a Spanish variation of the word. I used to have a few bee hives. Where are they when I need them?
This came and went on the BSTC forum sometime last year. A bunch of posters bought the stuff and tried it. As far as I know it did nothing.
These researchers are Cuban. Cuba has a big beekeeping industry and is trying to build it up. As they produce more honey, they end up with more propolis as a by-product. So they're probably trying it on all sorts of things, looking for ways to market it.
From www.wowcuba.com:
"Cuba is increasing honey production to better meet European demand. Cuba collected 7,200 tons of honey during 2003, the largest yield in 12 years. This year Cuba is set to produce more than 700 tons of specific honey from campanula and mangrove plants, highly sought after for the honey's clarity and freshness. Cuba also has the certified potential to sell 1500 tons of organic honey.
There are 200,000 hives on the island but only 144,300 are currently functioning. Production has been increased in both the horizontal and vertical sense by increasing the number of containers in order to raise the amount of honey stored. A digitized map of Cuba's vegetation allows a more productive placement of the hives. Payment to the over 2500 local growers has also been streamlined to better reflect the quality and time to harvest. Honey is also being more widely used in domestic creams and nutritional products."
Quote from: hopeful on January 23, 2006, 08:54:45 AM
I am a big believer in Enzymes...however, due to the nature of the disease ( scar tissue) I felt that taking enzymes orally would take forever and began looking into an enzyme creme that could be delivered via Ionotophoresis.. I approached one of the largest enzyme manufactures.. they formulate for just about everyone including the high-priced Neprinol... with my theory.. they got back to me and introduced me to a small company that has been making a creme and has been using it to treat Lymhodema... it has worked.. I introduced the company to Peyronies Disease.. their treatment eats or destroys the fibrous tissue.. which is the main thing for Peyronies Disease...
Clinical Trial- I told them that I want to try and organize a small clinical trial with myself and some other Peyronies Disease patients under the supervision of a medical professional....would you be interested as a medical professional???
They want me to start applying it topically..
Hopeful:
Have you started this topical treatment? What is Lymhodema? I have never heard of that before. What is the topical ointments ingredients?
iteresting... Keep us updated and good luck
Joshua:
Lymphodema is the swelling that occurs in any part of the body that has mucuous membrane or delicate tissues. It can occur on the penis in the forskin if not circumcised or in the tissue left after circumcision, etc. I had it occur several times when I first started using the VED after my radical.
It can occur when the body has too much fluid buildup for any reason.
I believe (not clinical proof) that someone who had congestive heart condition is subject to having this occur more frequently than one without the failure, etc.
Maybe someone else will have a better picture of it.
Old Man
Thanks Old Man. I am going to google it and read about it as well. Has this ever been accused of relating to peyronies?
Joshua:
As far as I know, there is no relation of this disorder with Peyronies Disease. It just seems to develop when the tissue gets slightly damaged or fluid builds up in the tissue.
Since my open heart surgery in 2004, I am taking Lasix generic to keep down fluid buildup in my feet and legs. This is supposed to help keep down lymphodema too I am told.
Old Man
100% special (non-plant enzymes) do not have formula as it has taken this company over 4 years of research.. they are modifying a batch for the Peyronies Disease test for me.. will keep you posted.. Also, with regrads to lymphodema.. just as any injury including Peyronies Disease it is part of the healing process of the body....producing the fibrin and sending it to the affected area....
Hopeful//
Still researching.......
Quote from: Joshua on January 26, 2006, 10:59:08 AM
Quote from: hopeful on January 23, 2006, 08:54:45 AM
I am a big believer in Enzymes...however, due to the nature of the disease ( scar tissue) I felt that taking enzymes orally would take forever and began looking into an enzyme creme that could be delivered via Ionotophoresis.. I approached one of the largest enzyme manufactures.. they formulate for just about everyone including the high-priced Neprinol... with my theory.. they got back to me and introduced me to a small company that has been making a creme and has been using it to treat Lymhodema... it has worked.. I introduced the company to Peyronies Disease.. their treatment eats or destroys the fibrous tissue.. which is the main thing for Peyronies Disease...
Clinical Trial- I told them that I want to try and organize a small clinical trial with myself and some other Peyronies Disease patients under the supervision of a medical professional....would you be interested as a medical professional???
They want me to start applying it topically..
Hopeful:
Have you started this topical treatment? What is Lymhodema? I have never heard of that before. What is the topical ointments ingredients?
iteresting... Keep us updated and good luck
what about the enzyme product WOBENZYE N is that a good enzyme
I have been unable to connect with anyone in their lab to find out what enzymes they are using.. whether plant or something else...will keep trying ..
Quote from: peter on January 28, 2006, 03:11:43 PM
what about the enzyme product WOBENZYE N is that a good enzyme
For whatever it means:
It says on the label:
3 tablets = 1 serving.
Amounts per serving:
Pancreatin 56,000 USP-units protease (pancreas) Sus scrofa 300mg
Papain 492 FIP-unit Carica papaya 180mg
Bromelian 675 FIP-unit Ananus comosus 135mg
Trypsin 2,160 FIP-unit (pancreas) Sus scrofa 72mg
Chymotrypsin 900 FIP-unit (pancreas) Bos taurus 3mg
Rutosid 3 H2O (Rutin) Sophora japonica 150mg
"FIP-unit is the measurement of enzyme activity according to the test
methods of the Federation Internationale Pharmaceutique"
For what it is worth. I took a recommended dose of Wobenzyme and a recommended dose of Fibrozyme. Both are manufactured and marketed by the same company. Wobenzyme is the oldest and by far the most popular enzyme mixture in Europe. Both of these were taken together for about 2 months and I continued the Wobenzyme for another month. Many of the ingredients were the same as those listed by flexor except the Fibrozyme also contained protease and serrapeptase.
I noticed no slight improvement and also did not notice any of the many other health benefits supposedly brought on by proteolytic enzymes. I do think they can help reduce swelling from an injury but I was not impressed.
FYI- Prior to Peyronies Disease, I have ben taking oral enzymes to control blood clots in my blood as well several other issues- very effectively- primarily protesease, bromelian etc.. since Peyronies Disease, ,I have added natokanaise..I strongly reccomend this protocol to any one who has a heart problem- especially arythmia - (when happens can easily throw a clot)- not a big fan of regular drugs.. Plus I suggest you might want to check into Live Blood Cell microscopy- do a google- saved my life 5 years ago...as I was a walking time bomb.. blood was filled with clots.... just had another test less than 3- weeks ago- NO CLOTS...Clean as a whistle.. The enzymes also eat...choletsterol and plaque...and fibin! However, I belive with Peyronies Disease.. it is going to take something a lot stronger in severe cases.. that is why I think collaneges may be effective..just dont like the needle injection...and exploring this other creme that uses diffenerent enzymes...serapeptaise etc..
Hopeful
Quote from: Hawk on January 29, 2006, 02:55:40 PM
For what it is worth. I took a recommended dose of Wobenzyme and a recommended dose of Fibrozyme. Both are manufactured and marketed by the same company. Wobenzyme is the oldest and by far the most popular enzyme mixture in Europe. Both of these were taken together for about 2 months and I continued the Wobenzyme for another month. Many of the ingredients were the same as those listed by flexor except the Fibrozyme also contained protease and serrapeptase.
I noticed no slight improvement and also did not notice any of the many other health benefits supposedly brought on by proteolytic enzymes. I do think they can help reduce swelling from an injury but I was not impressed.
Thanks,
These are good enzymes.. this is in tablet form what about creme as I have not ben able to source it???
Quote from: flexor on January 29, 2006, 11:45:10 AM
For whatever it means:
It says on the label:
3 tablets = 1 serving.
Amounts per serving:
Pancreatin 56,000 USP-units protease (pancreas) Sus scrofa 300mg
Papain 492 FIP-unit Carica papaya 180mg
Bromelian 675 FIP-unit Ananus comosus 135mg
Trypsin 2,160 FIP-unit (pancreas) Sus scrofa 72mg
Chymotrypsin 900 FIP-unit (pancreas) Bos taurus 3mg
Rutosid 3 H2O (Rutin) Sophora japonica 150mg
"FIP-unit is the measurement of enzyme activity according to the test
methods of the Federation Internationale Pharmaceutique"
Wobenzym creme is available from www.betterhealthinternational.com 2oz $9.95.
It needs to be transdermal rather than just topical. Maybe their Nanoshpere technology does that ?
Info:
"SUPPLEMENT FACTS
ACTIVE INGREDIENT: Menthol (1.25%)
PURPOSE: Topical Analgesic
USE: For temporary relief for minor pains and aches of muscle and arthritic joints, including sports and repetative motion injuries. Nanoshpere technology affords penetrating pain relief.
WHILE USING THIS PRODUCT: After each application, thoroughly wash hands with soap and water. Discontinue use if the skin becomes excessively irritated. In case of persistent symptoms, or recurrence, consult a physician promptly.
DIRECTIONS: Adults and Children 3 years of age and older: Apply to the affected area no more than three (3) or four (4) times a day. This product is not to be used on children under the age of 3 years without consulting a physician
INACTIVE INGREDIENTS: Water, Oryza Sativa (Rice) Bran Oil, Alcohol, Bromelain, Papain, Boswellia Serrata Extract, Palm Oil Glycerides, Harpagophythum Procumbens Extract, Zingeber Officinale Extract, Yucca Schidigera Extract, Polysorbate-80, Laureth-4, Silica, Sodium Hydroxymethylglycinate, Acrylates/C10-C10 Alkyl Acrylates Crosspolymer, Hydrophillic Polyether."
Thanks.. was aware of this.. Bromolain and Papin are very good.. not sure about the other ingredients.. plus transdermal... that is why I am researching enzymes ( stronger) that can be delivered via IONOTOPHROSES or needless injection, as well as orally...and topically??? It is all over the net for as little as $5.85,,,
Everything I research points to enzymes... the big question is what are the best ones... and what is the best way to administer...I certainly am not a candidate for a needle injection..doesn't make sense... more trauma, more scars, more Peyronies Disease.. HELLO.. I don't think these doctors or drug companies get it...
Hopeful
My Urologist started me on .6mg of Colchicine aday for the last 3 months..
Not much has happened, we talked about upping the dosage to 1.2mg started that last Saturday. we'll see
Jess,
My well known urologist had me on 1 .6 mg for one week, then 2 a day for a week, then 3 a day for a week.
Keep a close eye on your white blood count and other side effects (some can be serious).
I know of no studies showing Cholchicine works. I don't understand why that does not seem to bother the doctors as much as it does if we try infrared heat or a VED or Acetyl L-Carnitine that have few or no negative side effects. The importance of clincial studies seems to be used very selectively.
to everyone that istaking or thinking about taking colchicine,
DONT TAKE IT! Well, if u like feeling mildly sick, weak and taking a crap 4or5x a day. I have had a mild case of peyronies for the last three years, and i am very young (19), and the colchicine never did a freaking thing except probably making my overall health worse. i took .6mg almost everyday for five months (took days off when i felt too sick to take it).
Since then, i just decided it would be best for me to treat myself. I have also had a urologist (a year ago) that made a new plaque on my penis near the gland by just being too tough during a manual examination when he was squEEzing my tool for plaques, which he obviously found, and apologized later for being too rough. Maybe, it was because he was 76 and had STUPID arthritc hands.
DONT TAKE COLCHICINE. its just a waste of time, and you'll feel stupid after 6months of taking this crap with no results.
as of now, my peyronies is getting better b/c of a new regiment i made for myself:
a-l-carnitine, 3 types of vit E, vit c, msm, neprinol, this tea that i forgot the name of but can get it later, dmso+copper spray+vit e oil+leech oil,
and last but not least the Soma Correct VED which has helped the most in the shortest amount of time(only had it for two weeks). VED is def the most important aspect of my treatment, all the other stuff is for preventing exacerterbation of peyronies and for pain management.
Can you give us you daily consumption and usage of everything you listed...regimem. brand names, amount you are taking, how oftern and how much of each,,,as for the VED.. how often do you use.. and what is your bend?? degrees how severe and where...would like to know.. what do you think the cost is monthly for everything you are doing???
Hopeful
Hawk.. Last blood test I had all my levels were right where they should be.
I haven't had any side affects with the stuff yet.
The urologist I see at the VA said he's had some good results with the stuff. Don't know how or why it works.. I have noticed that the bend has changed just a tad.. not much, but enough to notice.. Who knows.. Maybe this weekend when I see my girl I'll ask her if there is any difference..
Jess, im glad that youre not being adversely effected by the colchicine but at some point u should consider what Hawk said: "i know of no studies showing colchicine works"
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10332485&dopt=Abstract
basically saying that 1 in 3people in the early stage of the disease will improve but not by much (1999 study)
http://www.hisandherhealth.com/articles/Peyronies_Disease_A_Discussion_Explanation_and_Options.shtml (recent)
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14973528&dopt=Citation
2004 article saying this stuff is pointless
basically, you'll see the oldest study (7yrs old) is the only study saying that colchicine is beneficial. Overall, for cases ranging from very mild to severe, 1 in 10 might improve, and that one case is probably the most mild.
colchcine is like our modern day tamoxifen...it doesnt really work when compared to more responsive treatment AND LESS OR NO side effects
im not trying to bag on colchicine, but i dont think its going to help someone with peyronies but maybe someone w/ gouty arthritis
hopeful, you should go to www.peyronies-disease-help.com
talk to Dr. Herazy if u can, he's real easy to relate to since he has this himself...i dont think these treatments are a cure but they will def help w pain...id talk to Old Man if u cab about the VED
And here's one from 1992, when it apparently worked just great:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&list_uids=1568169&dopt=Abstract
It's a familiar pattern. The first study, on three patients, concludes with "wow, it worked". As subsequent studies involve more patients and better measurements, the positive results disappear like a popsicle in the sun. All that's left are the creepy side effects.
I have spoken to him several times and have asked him for any kind of studies he has...and basically his answer is he has none.. don't doubt that he is sincere and that his protocol is good...( very expensive) but in reality he is a front for Neprinol... and is selling his stuff as well.. DOn't have the pain.. just the curve .. it has been about 8-months now...I guess I am supposed to wait until it stabilizes.. I am researching other modalities that are out of the box... Herzay is right about enzymes.. they work.. however, it is my opiniom that it will take more than oral enzymes to correct Peyronies Disease... a combination of enzymes and some other modality.. possibly an enzyme injection ( like collagnese-Auxillium) which I am not fond of a needle.. that is why I am exploring IONOTOPHORESIS as well as a topical enzyme creme and needless injection.. delivery method.. Wil keep everyone posted when my research is complete...
Hopeful
I look at it this way, I get the medication thru the VA here in Anchorage, and I'm not spending large amounts of money on it. And it's worth a try and a better solution to being sent down to the VA Hospital in Seattle and have a resident cutting on my wanger.
Since I'm service connected disabled my medical care is free, but there are some limits to what I'll do..
The Doc here said he'd gladly do a Nesbit, but I figured I've lose enough lenght with the bend. And suprisingly enough the few women I've been with didn't seem to mind being on top getting their "G" spot tickled all the time.
If this doesn't work I'll try something else down the road. Never give up I say...
How long have you had Peyronies Disease?? Where is your bend? what degeree?? and how much length and girth have you lost???
does pentox work?
What is Pentox.. anybody out there??? who knows... whats working if anything.. or are we all doomed???/
I've be on Verpamil cream for about three months now. Not heplful much. I have had Peyronies Disease for almost 8 months. 30% curvature. Really bummed out. Seems like there is no real answer out there. The forum has informed me alot though. Thanks
Hi Tom, I used the verapamil cream for 6 months , no help and a wasteof money. I don't place many posts but i do appreciate the forum. It has kept me well informed especially with possible treatments from others with Peyronies Disease.
DId you use a VED??? How bad is yours and howlong have you had it???
pentox is a blood flow drug. there are studys with pentox and arginine that help penis tissue.
[Where cam I get a copy of the study???
Felt obligated to update my progress...
Current regimen:
Vitamin E 400mg 3 x a day
PABA 3000mg 4 x a day
acetyl-l-carnitine 1000mg 2 x a day
baikal skullcap 1 tablet 2 x a day
Vitamin D 2000 IU (upper level recommended for low toxicity risk) split into three doses
l-arginine 2000mg 3 times a day
gotu kola 500mg 3 times a day
bromelain
I think that is everything. Been on this regimen for about 6 weeks. Pain improved, can't say this does or does not have anything to do with the meds. Curve has been stable. Some of the "waisting" with a half erection has improved...again, no specific correlation as I'm about 5 months into this most recent bout.
Gonna keep it up for another 6 weeks at least, as this regimen represents the best evidence-supported regimen I can come up with. Many of the studies, as small and possibly confounded as they may be, were over several months and reported only modest results. I'm hoping for a cumulative effect here!
I also posted a question in the "progression" topic...any feedback would be great!
roadblock
I hope j doesn't mind me posting a portion of an email he sent me...excellent work on his part that I didn't want to just keep for myself:
"Maybe you've seen this web site:
http://www.dupuytrens-a-new-theory.com/pages/1/index.htm
It speculates on a possible link between Dupuytren's disease and insulin, with enough supporting evidence to give it some credibility, and ends with a suggestion that vitamin D might make a difference.
Recently I did some web searching for current news on D and Dupuytren's or related conditions and found ome interesting things.
First, Peyronie's, Dupuytren's and Lederhose are part of a group called "superfical fibromatoses". Another group of conditions, including Desmoid tumors, are called "deep fibromatoses". In all of them, cells called fibroblasts are running out of control, synthesizing inappropriate amounts and types of collagen.
http://www.histopathology-india.com/Fibromatosis.htm
While there's little reasearch being done on Peyronie's, there's more on general fibromatosis. But those guys focus on more serious conditions like bone marrow fibrosis and desmoid tumors. Here's a report of a major desmoid tumor being rolled back by several months of D3 supplements:
http://jjco.oxfordjournals.org/cgi/content/full/34/8/472
That store impresses me because it's about actual reversal. I kept searching on D3 and fibroblasts, etc. and turned up a more things like these:
http://joe.endocrinology-journals.org/cgi/content/abstract/105/1/79
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8182985&dopt=Abstract
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8182985&dopt=Abstract"
If you look around you can find some good information about what doses of Vitamin D are safe to take. Another one of those "can't hurt" type things, especially for those of you whose diet is as deficient as mine!
roadblock
I just wanted to share this link. FYI purposes
http://peyronies-disease-help.com/treatmentcopper.html (http://peyronies-disease-help.com/treatmentcopper.html)
Joshua
Well Hello guys. It was suggested that I check this site out after being disappointed with another site. I was recently diagnosed with P.D. 3-4 weeks ago. Actually noticed Plaque and "Hourglass shape" 2 months ago. Figured It would go away. Hadn't even heard about this condition until the Urologist told me. I went to a 2nd Doc after being told by 1st there was nothing he could do. 2nd said Vit E 200mg. and I could try the Topical Verapamil. Between all of these sites, I have seen some men having success and others feeling totally scammed. I had already sent in my Money Order before knowing it might be a waste of money. I will update you on any if all progress. Otherwise it appears that the ALC and NOS might be worth trying. Can these be hard on the digestive tract? I also have insomnia and slight depression. Might ask for Trazaodone. Any other suggestions or success stories would be greatly appreciated.
Thanks-Zigwyth
Sorry I don't have a "success" story for TV. A urologist prescribed it, I applied it dillgently for 8 months with no noticeable effect. To make it even more fun, insurance paid nothing.
Over the years I've seen only 2 posters claiming positive results, and in the case of one of them, the claimed improvement was very slight. I wish I could be more encouraging. PDL had what appeared to be a credible study backing up their claims, but years have gone by with no independent confirmation. Urologists seem to continue prescribing it but without enthusiasm.
I used the TV for about nine months and like J my insurance paid nothing. However I do not know if it was the TV or the Peyronies Disease running its coarse, but I went from having a flat plaque about the size of a quarter in on the top center of my shaft and lots of pain to no plaque and no pain. Like I say I do not know that it was the TV after reading all the post from guys saying that it did nothing but with Peyronies Disease I guess we will try anything. I am wondering if it reoccurs whether I would try it again or not but probably would!
zigwyth,
Welcome to the forum! Yea, Peyronies Disease sucks but you are in the right place to stay informed and feel better about it and even an occasional laugh.
With regards to oral treatment, my best guess is posted a few back on this topic. From everything I came across, it represents in my mind much of the best possible stuff out there. Of course, there is very little evidence for any of the Peyronies Disease meds/supplements, but I felt like I had to do SOMETHING and as long as there wasn't a high chance of side-effects and/or toxicity, I figured what the hell it can't be much worse than the pain and dysfunction! Hope I'm not frying my kidneys... ;)
Most of the things people take for Peyronies Disease are supplements which supply the body with the maximum amount of an essential vitamin or building block to maximize/normalize function. Vitamin E, Vitamin D, acetyl-l-carnitine, PABA, l-arginine...they all fall into this category.
The bromelain, papain, etc I think have a role as well...just remember to take them on an empty stomach.
Finally, I have been taking Yohimbe twice a day and been having great results. As the pain has been dissipating, it has helped me feel more like myself. My guess is that it wouldn't be a good idea for anyone with heart disease or other vascular disease at it can have similar effects that Viagra can have. Not a medical opinion...just a guess.
Hope that helps...just one guys opinion. The best advice you can get, I think, is to always stay vigilant, keep looking, reading, researching, etc. and come up with what you think will work best for you. Certainly, there is a window during the inflammatory phase that some of these will have their optimal effect.
Not sure where your Peyronies Disease stands right now, but keep positive!
roadblock
emersonchief - did you have a bend and if so, did it improve?
j I guess I am fortunate in that I had congenital curvature downward at approx. 10 to 15 degrees and now I have a slight curve upward and slightly to the right. It does not pose a problem with sex and I am thankful for that. If only it will stay. I have been stable at this stage for about a year.
Date: 2/17/2006 10:42:33 AM
Subject: latest Lue publication
Name: M UK
Treatment of Peyronie's disease with oral pentoxifylline
William O Brant, Robert C Dean and Tom F Lue* About the authors
Correspondence *Department of Urology, University of California, San Francisco, 400 Parnassus Avenue, Box 0738, San Francisco, CA 94143, USA
Email tlue@urol.ucsf.edu
Summary
Background A 51-year-old male presented with a penile deformity without obvious etiology. Physical examination revealed hard plaques in the dorsal and ventral penis.
Investigations Physical examination, penile ultrasound.
Diagnosis Peyronie's disease.
Management Oral pentoxifylline.
Keywords: pentoxifylline, Peyronie's disease, ultrasound
Top of pageThe case
A 51-year-old Caucasian male presented with the chief complaint of a penile mass, which had been present for 8 months. The mass appeared, grew rapidly for 3 months, and then remained stable in size. The patient denied associated pain except with sexual intercourse, which he attributed to an abnormal curvature of his penis during erection. He could not recall any traumatic injury or pain during intercourse or masturbation before the development of this condition. On one occasion, the patient's dog jumped and its paw hit his penis through his clothing, but this incident was several months before initial presentation. His general health was excellent. The patient reported social use of alcohol and abstinence from tobacco. He initiated oral vitamin E supplementation upon discovery of the mass, as recommended by his primary-care physician, and he used no other medications. Erections were less firm than previously, but were adequate for sexual intercourse with the use of sildenafil. He denied any knowledge of a family history of this condition or other fibrotic diseases such as scleroderma, Dupuytren's contractures, or Lederhosen syndrome.
On physical examination, the patient's head, neck, chest, and back were unremarkable, and his hands and feet were free of contractures. Both testes were descended and his digital rectal examination was normal. His penis was circumcised and had hard palpable plaques on its dorsal and ventral aspects. Ultrasonography was performed, revealing two calcified areas in the tunica albuginea of the left corpus cavernosum, one dorsal and one ventral (Figures 1 and 2). In the outpatient clinic, the patient was given an artificial erection, using a 0.3 cc mixture of papaverine and phentolamine followed by genital self-stimulation. His resultant erection demonstrated excellent rigidity with a 30° dorsolateral curvature, with an hourglass deformity at the site of curvature.
Figure 1 Penile ultrasound showing areas of calcification within the plaques at the time of presentation.
Full figure and legend (48K)
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Figure 2 Penile ultrasound showing areas of calcification within the plaques at the time of presentation (different cross-section from Figure 1).
The arrowhead points to a cavernous artery.
Full figure and legend (46K)
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The patient was prescribed PENTOXIFYLLINE, 400 mg three times a day, for 6 months. Upon re-evaluation 6 months later, his penis had straightened to approximately 10°, but still demonstrated an hourglass deformity and dorsolateral curvature. Although sildenafil was still required, the patient noted less pain with intercourse. Pentoxifylline use was continued, and, upon reassessment 2 years later, improved erectile function was reported without the use of erectogenic agents. On physical examination, the dorsal plaque had decreased in size and softened in texture. Ultrasonography confirmed resolution of the dorsal calcification, although the ventral plaque remained present (Figure 3). One year later, the patient continues to take pentoxifylline.
Figure 3 Penile ultrasound showing resolution of the calcification within the dorsal plaque after 2 years of pentoxifylline treatment.
The ventral calcification remained.
Full figure and legend (73K)
Figures & Tables index
Download Power Point slide (264K)
Top of pageDiscussion of diagnosis
PEYRONIE'S DISEASE is characterized by the development of fibrotic plaques within the tunica albuginea. Recent epidemiologic studies have reported a prevalence of 3.2% in 8,000 German men,1 although the prevalence could be higher than this. As with many sexual dysfunctions, men might be reluctant to report their deformity, and men with untreated erectile dysfunction might not be aware of an erect penile curvature. Other studies have found the prevalence to be as high as 8.9% in a population of men being screened for prostate cancer.2, 3 The natural history of Peyronie's disease is controversial; one study suggests that 50% of patients have some degree of resolution or improvement,4 while a more recent study claims that only 13% of patients report improvement.5 The literature on natural history, however, is based on questionnaires sent to men diagnosed with the disease, and no natural history data was obtained using palpation or other objective measures.
The etiology of the condition is equally controversial. The most widely accepted theory is that an injury to the penis, causing a buckling or tearing of the tunica albuginea, results in the disruption of blood vessels, leading to an inflammatory response with subsequent remodeling of the connective tissue into fibrosis. The resultant deformity caused by fibrotic inelastic tunica predisposes the area to further injury. A recent review of 393 men with varied causes of penile trauma, however, did not demonstrate an increased occurrence of Peyronie's plaques among these men, in comparison to a normal population—underscoring the fact that the pathobiology of Peyronie's disease remains incompletely understood.6
The initial component of a subjective evaluation often uses a questionnaire or clinical history to estimate the degree of deformity and its effects on the patient's quality of life. The aim of the initial evaluation is to provide information on the duration of disease, any history of trauma or injury, and the characteristics of the deformity, including the degree and direction of curvature, loss of erect penile length, rigidity of erection, pain with erection or intercourse, ability to achieve penetration, girth, and the presence of a hinge. An assessment of the level of sexual satisfaction and of psychological stress should also be made. In our patient, there was significant decrease in quality of life and an increase in psychological stress, as he was unable to have normal sexual intercourse. In addition, he suffered moderate erectile dysfunction and curvature.
Physical examination should start with an assessment for other forms of fibrotic deformities, particularly in the hands (Dupuytren's contractures) and feet (Lederhosen syndrome), followed by a routine genitourinary assessment, with special focus on the presence, size, and location of palpable plaques, as well as measurement of the stretched flaccid penile length. The patient could bring a photograph of the erect penis to demonstrate curvature, although some authors have suggested that this method might be inaccurate.7 Alternatively, the patient could be given an artificial erection in clinic with intracorporeal smooth-muscle relaxants, to allow a thorough examination. We use a protractor to help us measure angles in clinic. Our patient had no associated extragenital physical stigmata, and we evaluated him in clinic, using a pharmacologic erection with genital self-stimulation.
In addition to measuring stretched penile length, we routinely measure palpable plaques using a ruler. An ultrasonographic evaluation is performed using a 7.5 MHz probe. In addition to the location of the lesions, we record the ultrasonographic size of plaques, tissue echogenicity, plaque characteristics (punctate or dense calcifications, tunical thickening), and the presence of intracavernous fibrosis. Some researchers have assessed the diagnostic value of MRI as part of their evaluation,8 but we do not routinely include this. Our patient was found to have two densely calcified areas within the plaques, without concurrent intracorporeal fibrosis.
Top of pageTreatment and management
The great number and variety of purported treatments for Peyronie's disease is in proportion to the difficulty of its management. They might be generally categorized into oral, topical, injectable, and external-energy agents. Discussion of the myriad surgical options is beyond the scope of this paper. Common investigator-defined and patient-defined treatment endpoints include resolution of pain, improvement of curvature, softening of plaque, and improved sexual function. Together, we and our patient deemed treatment to be successful based on his improved erections, improved ability to have sexual intercourse, the lessening of his degree of curvature, and, objectively, by the reduction of calcifications visible with ultrasound. A partial listing of treatment strategies is presented in Table 1. Few of these agents have been found to be completely efficacious, and almost all studies are epidemiologically hampered by low patient numbers, lack of control groups, lack of reproducibility, and an inability to distinguish efficacy from spontaneous improvement in the disease process—especially with regard to pain, where spontaneous resolution is generally the rule.
Table 1 Agents used to treat Peyronie's disease.
Full table
Figures & Tables index
Download Power Point slide (260K)
Pentoxifylline has been used in humans (in divided doses of 800–1600 mg per day) in a variety of inflammatory and fibrotic conditions, including radiation fibrosis,9, 10, 11 radiation proctitis,12 cystic fibrosis, radiation pneumonitis, steatohepatitis,13 epidural fibrosis,14 and osteoradionecrosis.15 Our dosage is derived from these other uses of pentoxifylline. The mechanism is not fully known; pentoxifylline blocks the transforming growth factor (TGF)-1-mediated pathway of inflammation, prevents deposition of collagen type I, and acts as a nonspecific PHOSPHODIESTERASE (PDE) INHIBITOR. Valente et al. have demonstrated that both sildenafil and pentoxifylline reduce the plaque size in tunical fibrosis induced by injection of TGF- 1.16 Encouraged by pentoxifylline's observed suppression of collagen production in Peyronie's cells in tissue culture, as well as its efficacy in other human fibrotic disorders, we have been offering patients treatment with pentoxifylline for Peyronie's disease since 2002.
Our patient used sildenafil before recovery of erectile function, and one might well question whether this played any role in either the pathogenesis or resolution of his disease process. Pentoxifylline has been shown to be a nonspecific PDE inhibitor, and PDE inhibitors have been shown to play a role in preventing fibrosis.17 However, sildenafil has been implicated in causing and preventing penile smooth-muscle fibrosis.18, 19 At this time, there is a paucity of experimental data regarding PDE inhibition and fibrosis, compared with data regarding pentoxifylline and fibrosis, and so we feel that the patient's improvement was due to the effects of pentoxifylline rather than those of sildenafil. Although this case study does not represent a placebo-controlled study, the fact that there was objective resolution of the dorsal calcification leads us to believe that this is not due to the placebo effect or to spontaneous resolution. We continue to follow a growing series of patients with improved or resolved calcified plaques on follow-up ultrasound with concomitant improvement in clinical symptoms, as is the case with the patient presented in this case study. We have identified 16 patients so far, and will present our data in the near future. Since pentoxifylline has been shown to inhibit fibrosis in humans and in animal models, we generally use it in patients who have evidence of ongoing inflammation (e.g. pain) or fibrosis (e.g. changing curvature). We have not generally used it for patients with chronic stable lesions or with heavy calcifications, since we presume these to be stable and less amenable to pharmacologic intervention. We have seen improvement of this nature (full or partial resolution of calcified plaques) in approximately 2–3% of our patients. Stabilization of the disease process is common, but is far more difficult to distinguish from the natural history of the disease.
Top of pageConclusion
This case represents a typical presentation of a patient with Peyronie's disease. Despite the often disappointing results associated with nonsurgical management of the disease, our patient demonstrated improvement of penile curvature, erectile function, and of the ultrasonographic appearance of his lesion. He did not require any corrective surgical procedures, and, although an hourglass deformity remains owing to inelasticity of the tunica albuginea at that site, he is able to have painless sexual intercourse without the aid of pharmacologic agents. These results, however, are not typical for the large number of men who suffer from this disease, further underscoring the need for continued research into the etiology and treatment of this common ailment.
Top of pageReferences
Schwarzer U et al. (2001) The prevalence of Peyronie's disease: results of a large survey. BJU Int 88: 727–730 | Article | PubMed | ISI | ChemPort |
Mulhall JP et al. (2004) Subjective and objective analysis of the prevalence of Peyronie's disease in a population of men presenting for prostate cancer screening. J Urol 171: 2350–2353 | Article | PubMed | ISI |
Gholami SS et al. (2002) Peyronie's disease: a review. J Urol 169: 1234–1241 | ISI |
Williams JL and Thomas GG (1970) The natural history of Peyronie's disease. J Urol 103: 75–76 | PubMed | ISI | ChemPort |
Gelbard MK et al. (1990) The natural history of Peyronie's disease. J Urol 144: 1376–1379 | PubMed | ISI | ChemPort |
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Hi Peter,
I just read your post- I have been doing my own research as I feel that the medical industry is stil in the dark about Peyronies Disease and what protocols to use etc- including drugs-
Please read my post below-that was posted on the medical devices- I think you should find some of this to be worth invstigating including the ablation - laproscopy- as well as the enzyme creme- do you have any medical contacts in South Florida- that would be willing to conduct a trial with the creme... please let me know.
Hopeful- ( Post below)
Susan,
How is the VEd helping your husband... is he able to maintain an erection? what about the Peyronies Disease?, where is his curve?- how long has he had it?....What about the Verapimil injections- who did these- and what was the outcome?- DId he consider IONTOPHORESIS?- www.physion.com ?- I was considering- but have not seen enough evidence- if itwas really working it would be ALl over the forum. I have not purchased a VED yet..
I have had Peyronies Disease for abut 8 months- no more pain- have low testosterone - 300 - have 35% curve at tip of penis- I think it is getting worse..I am only taking oral enzymes for now - . I am working with (3) other companies doing research- one is a company that does high frequency ultra sound- which they are curing prostrate cancer- 100%- and laproscopy- ablation- to remove tumors- see link http://www.misonix.com/medical/US/dApplications -
After speaking to them about Peyronies Disease, they feel that their ablation method may be a modality to try- and they are in the process as we speak- to get approval in London to test this on a cadaver with Peyronies Disease- basically they are able to dissolve cancerous tumors, and suck them out-very similar to liposuction...
I am also working with another company- that has invented a needles syringe- no pain- no bruising-no bleeding - that has just finished a 2,000 patient trial on men with ED and diabetic that cannot take oral Viagra, Cealsis etc- with fantastic results- I am also working with another company that has created a super strong Enzyme creme- that has had fantastic results with DP & lymphodema - both similar to Peyronies Disease - same basic conditions in different parts of the body- I just got the creme- 2 days ago- and started applying it- I will also begin an oral enzyme protocol as well- I want to find a doctor to work with that can monitor the treatment ( before and after) I will be sending sample to the company with the needless syringe to see if this can be administered this way as well- I am also trying to see if it can be administered via IONTOPHORESIS too.
Still trying- still Hopeful- very hard on my wife- no sex- for almost 8 months-very difficult to penetrate- very embarrassing-afraid to try- am 58
Though it is not Peyronies Disease related, here is one very objective information site on herbs. They have no monetary interest in sales and are very research oriented. They include any known clinical studies.
http://www.mskcc.org/mskcc/html/11571.cfm?RecordID=548&tab=HC
Hopeful, exactly what do you do for these companies?
Hawk,
Thanks for the link to the website. It has a lot of info and it is a reputable website.
Phil
Hi Chuck..
I do not do anything for them- I am just doing research.. if you have been reading my posts- you will know my condition- 58- have Peyronies Disease for almost 8 months- 35% curve upward-scammed out of $2,000 plus by so-called Peyronies Disease specialist. Also SO called specialist want $165 an hour telephone consultation...Dr. Lev??? in Chicago-everyone is making claims- and making money on us...but the more I researched this forum and the other, etc., bottom line- NOTHING HAS WORKED 100%..plus I have a heart condition ( arrhythmia)-- which I do not want to take any drug that can affect it.
I have some knowledge first-hand in the success of enzymes-primarily due to my arrhythmia- as there is always a possibility that a blood clot can be thrown during an episode... ( I had a live blood cell microscopy test done 5 years ago- that revealed that my blood was completely compromised- it was like a sewer- filled with giant- thrombocyte aggregations ( Big Nasty-will kill you in a second type blood clots).plus a host of other bad issues... all from poor living, eating, stress, drinking etc.,-that is when I discovered what enzymes can do.. they saved my life as I was one heart beat away from either a stroke or a heart attack. They litterally eat the blood clots, along with plaque and fibroblast ( fibrin)-in the blood, etc- ( any basic search on Google or Pub Med etc., will validate this) I have my blood done live cell at least every 6 months-I am clean of BC's. - I do not take any DRUGS for this condition.
I am a person who thinks out of the box- and ask why?- that is why I am doing the research...If you are following the pending auxullium clinical trials.. you will know that the drug is really an Enzyme- Collaganes ( not sure of the spelling)- great!- but they want to inject it with a needle ( stupid)- can cause more scar tissue.- that is when I started looking at other possible enzyme topical protocols and discovered the needless syringe- ( brilliant-no scarring, no bleeding) plus IONTOPHORESIS- simple little device that can probably be built for less than $50-$60, that the company is marketing for $1,000 including 25 verapimil treatments, etc... Excellent PROVEN delivery method- have found similar devices- for as little as $295.
Right now I am only taking enzymes orally- plus I just started testing an enzyme topical creme...with a company where the owner lost her breast to cancer several years ago and developed lymphodema ( same basic problem as Peyronies Disease as fibrin collects because of the healing process) Over the years, she has done a tremendous amount of research- and has had great success using a topical enzyme creme to control the lymphodema- and also Dupreyns condition as well- I am excited about this and I shared Peyronies Disease with her- I am her first Peyronies Disease client- and as stated, I am testing the creme.
I am also waiting for the company misonix to complete their test on a cadaver in England with their laproscopy method- they are curing prostate cancer with 98% success rate with no Peyronies Disease, plus they are able to dissolve brain tumors and litterally suck them out using a high frequency method...-They are under the belief that their system can dissolve the calcium, plaque-fibrin tissue-which Will be great.. However- I do not believe that it will be a 100% cure- as the real problem is the healing- and bringing blood to the area. you can visit them at www.misonix.com
That's basically it. How about you- what have you been doing and is it helping.
Hopeful
Hopeful,
You often mention
Quoteneedless syringe- ( brilliant-no scarring, no bleeding)
Being familiar with only one type of needleless injection, I have the following thoughts.
Assuming that and an injected agent is found that actually is very effective in breaking down scar tissue, it would logically follow that the needle entry that delivered it would not scar.
Second point is that I think the concept of a "needle" leaves negative thoughts with people and they assume "needelless" is much better, less fearful etc. I think it is likely that any rapid delivery injection system is invasive whether it uses a needle, pressurized solution, or other system. I would also wonder how a needleless delivery could pinpoint depth of delivery and not distribute a trail of the agent from the skin to the final depth, including into blood vessels in the path.
[Hawk,
The company just completed a 2000 patient trial- men with diabetes and can not take oral medication Viagra, Cealis, etc.. the results will be out soon-great success.. I think the needle injection will soon become obsolete for diabetics, ED, etc... I will forward your comments to the company... as stated earlier, they will begin working soon with a doctor in Canada for clinical trials using this system and different drugs, enzymes etc-
Hey!- It sure sounds better than sticking your penis with a needle- or cutting it open...
Hawk and Hopeful:
This is an item in the for what it's worth dept. The military has been using needless injections for immunizations for many years. Had many of them myself when in the service.
As far as I know, there were no problems with the delivery of all the vaccines we had to take over the years. There a few cases of minor bleeding with those guys who were taking certain meds, etc. But otherwise there seemed to be no problems with that injection type.
I agree that blood vessels could be damaged and might cause some concern, but the risk seems small versus the needle injection. I know first hand about them as the 12 verapamil injections that I had caused me more Peyronies Disease every time I was injected. If I can help it, there will never be any needle injections in my penis again!
Old Man
From what I understand.. much different delivery system.
Thanks- what is your opinion about injecting enzymes- this way- as an alternative to drugs?
Quote from: Old Man on March 23, 2006, 09:19:35 AM
Hawk and Hopeful:
This is an item in the for what it's worth dept. The military has been using needless injections for immunizations for many years. Had many of them myself when in the service.
As far as I know, there were no problems with the delivery of all the vaccines we had to take over the years. There a few cases of minor bleeding with those guys who were taking certain meds, etc. But otherwise there seemed to be no problems with that injection type.
I agree that blood vessels could be damaged and might cause some concern, but the risk seems small versus the needle injection. I know first hand about them as the 12 verapamil injections that I had caused me more Peyronies Disease every time I was injected. If I can help it, there will never be any needle injections in my penis again!
Old Man
hopeful:
As far as I know now, there would probably be no problem with injecting any medication through either method of needleless system.
Should be an effective way to preclude further trauma to the tunica area without the needle stick, etc.
Old Man
Old MAn-
I got this from the company- here is their answer-
See below:
Randy,
In answer to your Post, here are a few facts:
1. A needle is known to increase trauma to the scar tissue and the more needle you jab into the penis and into the affected area , the worse things get. I is like pouring gasoline on a fire.
2.. There is a big difference between a needle syringe injected into the Penis and the our needle-free injector used for a Penis injection. Essentially ,our needle-free injector is a very tiny liquid needle moving at supersonic speed. The stream of drug has the diameter of less than 10% of a small needle syringe. Therefore the trasuma to tissue is less than 1/10th that of the smallest guage needle syringe. We have studidied this in diabetics and found no scar tissue after thousands of shots with the needle-free injector.
3. The Device can be equipped with a variable power source that allows it to pinpoint the depth of penetration. We can target about 12 different depths.
Have a great weekend,
Randy,
In answer to your Post, here are a few facts:
1. A needle is known to increase trauma to the scar tissue and the more needle you jab into the penis and into the affected area , the worse things get. I is like pouring gasoline on a fire.
2.. There is a big difference between a needle syringe injected into the Penis and the our needle-free injector used for a Penis injection. Essentially ,our needle-free injector is a very tiny liquid needle moving at supersonic speed. The stream of drug has the diameter of less than 10% of a small needle syringe. Therefore the trasuma to tissue is less than 1/10th that of the smallest guage needle syringe. We have studidied this in diabetics and found no scar tissue after thousands of shots with the needle-free injector.
3. The Device can be equipped with a variable power source that allows it to pinpoint the depth of penetration. We can target about 12 different depths.
Have a great weekend,
You often mention
Quoteneedless syringe- ( brilliant-no scarring, no bleeding)
QuoteBeing familiar with only one type of needleless injection, I have the following thoughts.
Assuming that and an injected agent is found that actually is very effective in breaking down scar tissue, it would logically follow that the needle entry that delivered it would not scar.
Second point is that I think the concept of a "needle" leaves negative thoughts with people and they assume "needelless" is much better, less fearful etc. I think it is likely that any rapid delivery injection system is invasive whether it uses a needle, pressurized solution, or other system. I would also wonder how a needleless delivery could pinpoint depth of delivery and not distribute a trail of the agent from the skin to the final depth, including into blood vessels in the path.
I Hopeful. Thanks for the info. I hope there is an efficaious treatment in the very near future. I will get excited when it actually happens. I have had this for about three years now, I take pentox, cialis, and arginine. That's it.
Chuck- what is Pentox?- what is it supposed to do and how is it taken? Has anything helped at all- how old are you- and how bad is your curve- what doctors have you gone to?- DOes the Cialis help at all? I just found this on the Internet today- see link below-am asking for more information-it looks as if it is more than a VED.. have no idea of the cost-it seems as if it would make sense- especiually if the plaque is being softeened by whatever treatments- wil post on the forum to see if anyone is using... All I can do is keep searching- and remain!!! ( Please click)
http://www.androline.com/inglese/h-penisbuilder.htm
Hopeful for a cure!
I Hopeful. Thanks for the info. I hope there is an efficaious treatment in the very near future. I will get excited when it actually happens. I have had this for about three years now, I take pentox, cialis, and arginine. That's it.[/b]
[/quote]
Most of the time I think of Peyronie's as a "cold case" where all the clues have led nowhere and no new leads are turning up. But every once in a while, something comes along - a report of some new 'study' showing 'promising' results that somehow are never duplicated as the years go by. Well, here's another one.
A guy on a Dupuytren's forum recently posted this link to a 2004 patent for the use of Accutane, taken orally, against Dupuytren's contractures. As many of you know, Dupuytren's and Peyronie's are generally considered to be essentially 2 manifestations of the same underlying condition. They are members of a group of "superficial fibromatoses" exhibiting virtually identical tissue changes. If a drug really did work systemically against Dupuytren's you might expect it to reverse Peyronie's too.
Here's the link, take a look:
http://www.pharmcast.com/Patents100/Yr2004/Mar2004/032304/6710083_Palmar032604.htm
Now, the weirdness. I can find no other web reference to the use of Accutane for Dupuytren's. Nor can I find any reference to "L. Dean Parks", the person - not even referred to as a doctor - who's apparently received this patent.
I suspect this is just another goofy patent issued by the U.S. Patent office based on a hokey claim. And I'm guessing that L.Dean Parks is a chiropractor, or a pharmacist like Jerry Easterling (transdermal verapamil) who apparently had some plan to sell Accutane to people with Dupuytren's at a nice markup, based on a flimsy patent. Anyone have a lead on L.Dean Parks?
Gentlemen,
Many of you have seen some of the preliminary information regarding pentox (aka pentoxifillin aka Trental). It seems to have alot of promise, especially in earlier stages but also as a possible prophylaxis due to its action against TGF-beta, which has been implicated in the pathogenesis of Peyronies Disease. It appears that afflicted individuals have an elevated level of this cell mediator.
In fact, the case report I saw from Dr. Lue reported significant reversal in advanced Peyronies Disease. The patient in fact had CALCIFIED plaque and experienced results!
Dr. Tom Lue, a leader in the field, is a proponent of this and is publishing additional information in the form of a small clinical trial. The drug itself has been out for a considerable amount of time and used in large numbers and has proven to be relatively safe (one of the arguments physicians will use to get out of prescribing a drug like this off-label DESPITE evidence AND despite overwhelming risk vs possible benefit consideration...after all, what is worse than Peyronies Disease? ;) )
In my humble opinion, we should all be pursuing this treatment modality. It would be great to see what type of results we get amongst the members here on the forum. Maybe some members here on the forum have already been using this drug and could provide additional info as well as some urologists who are currently prescribing this drug for Peyronies Disease patients.
roadblock
Roadblock,
A serious question here, I think many would try it if they had ready access. If we don't want to go through extreme doctor shopping, we need to give our best shot to the one or two doctors that we have a doctor/patient relationship with. How do we best make the pitch for a perscription? If we make a bad pitch and get a "NO" then we have 2 choices: do without; go shopping for random doctors we have never dealt with.
To All:
I have been reading the past few posts. I am a physician and have gained some interest on pentoxiphylline. It seems to have promise, from what I have read from other members on the forum. I have to say that I have not been able to look into literature on pentoxiphylline.
Again as we all know the vast majority of docs, uro's, and primary care docs are not bombarded with literature on Peyronies Disease and their knowledge is for the most part limited at best.
If a patient was to come to me, by the way I am not a primary care doc or a uro,
I would want to be sure these patients seemed educated about what they are asking especially off label use . Remember MD's are neurotic about liability.
You can reassure your doc that you've read everything on pentox. Also if you are a patient on coumadin you may have a higher bleeding episodes and your bleeding times( INR's) will be have to be monitored closely. As a convention , uro's will not monitor a blood thinner, usually your Primary doc or your cardiologist would if you have one, so they need to be aware. Reassure your doc that you understand the risks and the benefits and you are asking for the oppurtunity to give this medication a trial with CLOSE MONITORING.
There is no easy answers to getting a physician to agree to prescribe off-label for something that they do not understand. I think it would be of some benefit to approach any physician, either a uro or PCP, with the article on Trental that has been posted on this site and is easily accessible through any search engine. To expedite the encounter with the doc, highlight certain points in the article that will make your point. I suggest highlighting the fact that TGF-beta is implicated in Peyronies Disease and is inhibited by pentox. Also, make sure to stress that this information is coming from Dr. Tom Lue at UCSF and not from some questionable website trying to sell a product. Thirdly, as totheleft said, stress your understanding of the risk vs benefits of this therapy and encourage him/her to document this...even sign a written agreement acknowledging your understanding...so they will feel more comfortable.
I approached one of the physicians listed on the peyroniesassoc.org website about it (via email) and he stated that although he does not prescribe it he was going to contact Dr. Tom Lue about it. Since the Peyronies Disease specialist, like many sub-sub-specialists, are a small community they know the names of the others in their field and often have met at national meetings, through collaboration on studies, etc.
Bottom line...persistence is the key. The push nowadays in medicine is an evidence-based approach, meaning that if you have reviewed the data and a therapy is reasonable then you are vindicated in using it...even if it has yet to make it into the textbooks. So, if you assist your physician with a concise presentation of facts from sound sources (NIH, medline, etc.), and also demonstrating understanding of THEIR liability, I think you will stand a good chance.
If at first you don't succeed, try try again. Like I said earlier, I emailed a physician directly prior to paying for a visit to see if there is any chance they will prescribe Trental. It is reasonable to ascertain what treatment modalities a physician uses to treat a specific condition prior to paying for eval. Don't ask them what they will prescribe for YOU specifically, because they would need to look at your medical history, meds, etc. first as well as feel certain you have Peyronies Disease (not a question in the mind of anybody with it! ;) )
For what it is worth, here is the citation of the pentox article:
Nat Clin Pract Urol. 2006 Feb; 3(2):111-115
One more resource might be the office of Dr. Tom Lue at UCSF. Prior to contacting a doc, you might contact their office and explain that you are going to try to convince your doc that pentox is a worthy therapy for Peyronies Disease. Dr. Lue seems to be a valuable advocate in the medical community for Peyronies Disease and might be able to be of some assistance.
Hopefully some of us will be able to initiate treatment and provide some feedback here on the forum. Good luck!
totheleft, thanks for the valuable imput from a physician!
Roadblock,
I couldn't have said it better. I cannot reiterate the importance of being educated about what you are asking......pros and cons. Not that the doc is going to be the devil's advocate, but he will try to be sure there will be no drug interactions, adverse reactions, etc with each individual patient if he is considering using the the med. Also rest assured any good physician in this day and age will be documenting that the a " very lengthy discussion with the patient was had re: risks and benefits and the patient is in full understanding". In general pentoxiphylline is a generally well tolerated medication and has been out since the early seventies. There are some potent medication out there today administered differently for off label use that some physicians would ask for a signed consent, as though you were proceeding to surgery, but i don't believe a physician would do this for pentox. With all this being said.........a good general understanding between patient and doc goes a long way..........good luck to all......have a great Sunday.
One thing I wish I would have asked my first Urologist who said "There is nothing to treat Peyronies Disease with except is Vitamin E and surgery" is...can you give me the data you are using to arrive at this conclusion? There are no studies demonstrating any real efficacy with Vitamin E. However, there is reason to believe that high dose Vitamin E can have detrimental effects.
So, when faced with that logic AND a handy, highlighted copy of the preliminary Pentox data...shouldn't be a problem getting the script!
This seems very interesting . i did a web search and you can buy this mail order with no prescription. Any one up to conducting our own trial. I suppose its risky if you are on other meds but as I am otherwise healthy I am willing to give it a try.
regards
Grant
Grant,
As for me, I am not up for buying FDA regulated substances over the internet. My thoughts are that whether they are counterfeit or authenic regulated substances, that you would have to be dealing with unscrupulous individuals that will by-pass every law and ethics rule to make a buck. I don't think I care to ingest something provided to me from people of that standing.
Why not just approach a doctor armed with information and a rasonable request?
Hey guys. I have gotten many prescriptions from doctors for unapproved uses. In fact, I have never been turned down--not even once. Years ago, before it was known that finasteride worked for hairloss, I talked doctors into writing me prescriptions for spironolactone for hairloss. I let them know that I was educated on the subject and they always seemed intersted. Then, I talked some docs into writing scripts for Proscar. This was before Propecia was availble. I simply let let them know what the research was and that I understood what I was talking about. I now get scripts for pentox and would be shocked if I failed to get a script from another doctor. I went to a uro and told him about the study on pentox/viagra/arginine. He seemed interested. And then I told him about Tom Lue and his eyes lit up. I asked if he knew who he was and he said everyone knows Tom Lue. He was very impressed. He reached for his pad without hesitation.
PS A line that you may consider using is that you can legally buy a 3 month supply without a script from Europe, but you would rather be under the care of a physician and get it locally. If he knows that you will get it anyway then he will be more likely to give it to you.
pentox/viagra/arginine - Is this working for you?- If so, what is your regime?- How long have you had Peyronies Disease- what else have you tried that helpps or doesnt't help- are you using VED?
Hopeful.
Quote from: hopeful on April 10, 2006, 08:10:23 AM
pentox/viagra/arginine - Is this working for you?- If so, what is your regime?- How long have you had Peyronies Disease- what else have you tried that helpps or doesnt't help- are you using VED?
Hopeful.
I have been taking pentox for a few months now but I was only taking two a day for a while. Since incresasing it to 3 a day I think I have noticed a slight degree of improvement in curvature. I had it about 2 years before I began treatment. At this stage of the game, I will be happy with a mild improvement and also preventing it from progressing any further. I take the Cialis every other day and the arginine whenever I think about it.
With what is currently available, a mild improvement is miraculous and being able to prevent it from progressing any further is a Godsend.
Chuck,
Are you having any side effects, or did you have any at first?
Does your insurance pay for it?
How expensive is it?
Thanks.
Good luck and keep us posted
Quote from: Hawk on April 17, 2006, 01:21:08 AM
Chuck,
Are you having any side effects, or did you have any at first?
Does your insurance pay for it?
How expensive is it?
Thanks.
Good luck and keep us posted
Side effects are zero. None at all. My insurance does pay for it but my father is a pharmacist. He gave me a great big jar of it. I don't think it is very expensive though. I think it is definitely worth taking. Chuck
Anyone ever check this out? wwww.pyrotab.com Looks kinda fishy, but I'm about willing to try anything.
Twentydegree, we give you a warm welcome for joining the ranks of those that support the forum with questions and comments. I am glad you posted before spending your money. Go to this link and start reading the posts dated April 24, 2006 https://www.peyroniesforum.net/index.php/topic,45.msg2716.html#msg2716
Thanks again for the post
Chuck... I would llike to be able to contact your father..and see if I can get a supply.. how is it taken.. topically as a creme.. please let me know..
Hopeful
How much does it cost?
Quote from: hopeful on May 08, 2006, 08:23:21 AM
Chuck... I would llike to be able to contact your father..and see if I can get a supply.. how is it taken.. topically as a creme.. please let me know..
Hopeful
How much does it cost?
Hi Hopeful. Pentoxifylline is simply an oral treatment. It is commonly used to improve blood flow to lower extremeties--although I do not think that increased blood flow is the mechanism of action for improving the symptoms of Peyronie's Disease. There are a couple of studies and some info that someone posted above that you could print out and show your doctor. Or you could purchase pentox over the internet. It is a very common drug. I hope this helps. Chuck
Guys,
I've added a new pill to my list of oral treatments. At first I was taking Aceyl L Cartinine and 800 IU's of Vitamin E, and B-12 vitamins. I've know added Green Tea Extract which is supposed to help fight off free radicals that damage cells. It's been used in the far east on scar tissue and to heal the body. Is there an scientific basis for it, nope, is it worth a try, why not.
ComeBackid
Hey guys,
I ran across this and wanted to get opinions on what they think of this guy, seems kind of popular on google(many hits come up for him)
What do you guys think, a scam or legitimate?
http://www.actionlove.com/cases/case12394.htm
ComeBackid
ComeBackid, I believe most of us after looking at some of the ingredients would probably think scam, but maybe that's just my nature. I actually emailed the Doctor with viable questions on his products just to see his response. Will post when I get them. Zig
ComeBackid,
You asked for opinion and that is what I am offering.
He takes a few medical terms like prostaglandin E-1, collagen, and puts a few words like stimulate, encourage, inhibit in front of them. How did one man come to understand and have data that the rest of the world lacks. Does he rule over a massive clinical research facility to dwarf all other research facilities combined?
He has tons of supposedly anecdotal reports and he doesn't even offer documentation that the anecdotal reports are authentic. He makes sweeping statements with no documentation, footnotes, or even an explanation. Finally he profits from people believing his data and becoming a customer. When you add it all up, it spells SCAM to me.
I think that anyone that has not read and pondered over our "Weighing the Evidence" page on our website, should do so. Go to the top of our forum page right under where it says "Hello____" and click the PDS WEBSITE button -> click on treatments options ---> Click on Weighing the Evidence
Zigwyth,
Good idea, thats what I was hoping someone could do, cross reference the ingredients to see what they are, are they safe, and would they really do anything.
Hawk I had the same feeling as you, he throws around fancy language with no scientific or medical studies to back anything up. The shadiest part is, hes not just giving out information, hes got a big online store with products that hes selling, for every problem someone writes to him about, he just happens to have some pill that will cure it, seems like a bullshitter.
ComeBackid
One thing I can't figure out and hopefully some people will comment on this is why is MSM promoted to fight against Peyronies Disease? On the bottle it says it helps form collagen and healthy join tissue and cartilage, doesn't seem like that would break down collagen.
ComeBackid
Thought I'd update. He still has not responded to any of my questions, so I would definitely stay away from Action Love, ComeBackid.
Have there been any studies done in regards to Pentox? Has anyone on this forum used it thus far? It seems to be new as I haven't heard many people talk about it at all.
ComeBackid
Pentox (aka Trental) is being prescribed in the treatment of Peyronies Disease by a number of urologist who see alot of Peyronies Disease patients. Dr. Tom Lue at UCSF is one of these urologists, and has published a case study and will soon be publishing a report on a small group of patients who have had a positive result with the medication.
Although it has not been involved in any significant studies that would prompt the majority of urologists to use it, it has shown promise and hopefully will continue to gain momentum with positive clinical results.
Based on its proposed mechanism of action it seems that, as with many of these Peyronies Disease oral medications, the earlier the better. However, if the theory that Peyronies Disease is an inflammatory-pathway-gone-bad is true, then Pentox seems like a medication that Peyronies Disease patients should stay on long-term as a form of prophylaxis/prevention. Luckily for us all, Pentox has been used extensively in patients with claudication symptoms for extended periods and has been demonstrated to be pretty safe.
Here is the article people on here are talking about:
http://www.medicalnewstoday.com/medicalnews.php?newsid=38297
Look forward to hearing from members of the forum who are on Pentox (Trental) and what their experience has been thus far.
roadblock
Here is another article supporting the TGF-B1 theory...demonstrates the fact that it has the attention of the research community:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16734133&query_hl=1&itool=pubmed_docsum
One of the first studies I have seen evaluating Vitamin E. If your urologist tells you there is no evidence to support the use of Pentox, first ask him if he/she can provide you with evidence that Vitamin E has any efficacy. When they refuse, hand them this...not definitive but something:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16643617&query_hl=1&itool=pubmed_docsum
Hopefully the last one from me tonight...just a little evidence, not nearly conclusive, that supports the Pentox/Viagra/l-arginine regimen I have heard patients here on the forum put on:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16469038&query_hl=1&itool=pubmed_DocSum
Just started Pentox last week. My Uro suggested I combine the med with Arginine. He prescribed 400 mg. Pentox 3X a day and suggested I take 400 mg of Arginine 2x a day. He said there have been some promising results from the therapy although I got the impression that he didn't think this was the silver bullet. Couple other interesting things. My Doc is Levine from Chicago, he mentioned in my last appointment (just after the Atlanta conference), that there is a very promising drug/therapy that may be available by the end of the year. Of course he mentioned this while I was being injected with Verapimil so I was concentrating on "other things". However, I will discuss this further the end of this week and post any additional information that I get. He was pretty excited about the conference and the attention that was paid to Peyronies Disease...he said it was by far the most attention he has ever seen at the Uro conference. He also said he is also just beginning a new trial on a mechanical traction device that has shown promise in clinical trials in Europe. I think he is beginning the trial this month. Since I am getting intralesional verapimil, I was not eligible for the trial, however, I did purchase the device and have been using it for a short period of time. No major changes yet, however, the "frightened turtle" effect so common to all of us does seem to be gone. (At least junior finally seems normal when I take a leak)
I'll keep the board updated with any results that I see however, it may be difficult to determine exactly which remedy is helping...currently I:
Take 400 mg Vitamin E daily
Take 1200 Mg Pentox daily
Take 800 mg Arginine daily
Take 9 Neprinol Capsules daily
Intralesional injections every two weeks
Use Somacorrect VED
Use Fastsize traction device (just started)
Hell, I'd go out in my front yard naked and cluck like a chicken if I thought it might help.
So far, my curvature has stabilized at about 40 degrees dorsal. I've had Peyronies Disease for about 10 months. Good luck to everybody else out there in your hunt for an effective therapy. I know this thing is a nightmare, but what the hell, at least it hasn't fallen off...somebody is going to figure this out.
Hey welcome tot he forum wantitstr8.
How has the pain been with your verapamil injections?
One question for you, what is the frightened turtle effect that you refrenced in your last post?
ComeBackid
ComeBackid-
Next time you see a turtle tap on his shell a couple times and watch what his head does...one of the many distressing side effects of Peyronies Disease. As far as the VI, the pain is tolerable...sometimes barely. The numbing shots can be a little exciting but once it's numb the actual VI are not so bad. Not sure if they are doing any good, but it does make me feel like I am doing something substantial every couple weeks...if for no other reason than the 45 minute drive for injections I'd rather not have. I have had sone bruising and that concerns me...don't really want to have any extra damage down there to help the plaque along.
Wantitstr8,
Great analogy. It is very distressing. I have started l-arginine, Korean red ginseng and yohimbe. I have already seen some improvement. Non erect size has increased ( or returned to a more normal size) which helps with the turtle effect. I am very interested in traction. I am pleasantly surprised a doctor is testing it. I have an appointment with my uro to see about getting Pentox and 25mg Viagra to use nightly.
Thanks for posting.
Tried spell checking yohimbe. Suggested "homeboy".
Wantitstr8,
Who is your doctor-?- I have been in touch with www.injex.com a needless injector- check them out and have your doctor check them out- as they just completed a 3,000 patient trial for men with ED- because of diabetes, or can not take oral Cialis or Viagra- I also put them in touch with Auxillium- This should be a no brainer- No Pain- No Brusining- No Needle - No Scarring- Just don't get it
YOUR COMMENTS
QuoteThe numbing shots can be a little exciting but once it's numb the actual VI are not so bad. Not sure if they are doing any good, but it does make me feel like I am doing something substantial every couple weeks...if for no other reason than the 45 minute drive for injections I'd rather not have. I have had sone bruising and that concerns me...don't really want to have any extra damage down there to help the plaque along.
My doctor is Dr. Laurence Levine from Chicago...pretty well renowned Peyronies Disease specialist. I don't know much about the needleless injector...maybe I'll discuss it with him on Friday at my next appt.
Hey Guy's,,can i make a suggestion...You mentioned about ordering 25mg of Viagra from your doctor....A 100mg, 50mg and 25mg all cost's the same,,,my doctor says get your prescription for a 100mg and cut them in half or quarters and get more bang for your buck....I bought a pill cutter and it works great.....just a suggestion,,,,,,,,Kimo
Kimo,
Yes that is what I do as well, the price doesn't matter whether its 25mg or 100mg they are all the same. However viagra is not recomended for use with peyronies, although I think the jury is still out on this significantly.
ComeBackid
That will be great- it is all about education-and this company isnt like a giant drug company that has 1,000's of reps on the road- dispensing free drugs- to docs-
I am waiting for the publishing of the 3,000 case study with this system- once this comes out- I think- the UR's - will embrace this new protocol- as the last thing I want to do- after doing reserach is stick a needle in my penis- no matter how small- that can cause- additional scarring ( or Peyronies Disease)
You mentioned Neprinol- did Levine prescribe this for you- or is this something you added yourself?- Very expensive oral enzyme-I am doing a beta test with a tropical enzyme-formulated by the company that formulated for Neprinol- No Pain- no improvement yet on curvature- the only good thing I did was have an ultra sound- so I wil be able to compare once I get another one within 6 - months- have had Peyronies Disease for 10 months-
Hopeful
My doctor is Dr. Laurence Levine from Chicago...pretty well renowned Peyronies Disease specialist. I don't know much about the needleless injector...maybe I'll discuss it with him on Friday at my next appt.
[/quote]
QuoteHell, I'd go out in my front yard naked and cluck like a chicken if I thought it might help.
Wantitstr8,
New research shows naked clucking more effective than vitamin E for Peyronies Disease.
Sorry, I couldn't help it.
BTW, I'm still taking vitamin E
Levine did not prescribe Neprinol. I found it myself. I mentioned it to him and he wasn't impressed...didn't seem to think it would do any good...although he didn't really discourage me from taking it. I recently ran out of Neprinol for about a week...so I went about 8 days without taking the enzyme...wasn't even sure if I was going to order any more. However, (what I am about to say is purely anecdotal and could be totally unrelated to Neprinol) my pain seemed to increase about two days after running out. That little episode got me on the internet placing another order pretty quick. Again, this could be totally unrelated to the Neprinol and could have been a natural progression, but I figured I'd give it a couple more months of Neprinol treament before making a decision about this treatment. I'm basically throwing everything I can at this in the hope that something works. By the way, since starting the Neprinol again the pain has subsided...so who knows...
I've noticed that Acetyl L Carnitine stopped the slight pain and discomfort I had as soon as I added it to my treatments on my Peyronies Disease. I truely believe this to be effective in stopping the pain and possibly preventing the curve from getting worse.
ComeBackid
Quote from: pudder135 on June 07, 2006, 10:10:01 AM
I've noticed that Acetyl L Carnitine stopped the slight pain and discomfort I had as soon as I added it to my treatments on my Peyronies Disease. I truely believe this to be effective in stopping the pain and possibly preventing the curve from getting worse.
ComeBackid
Hi ComeBackid,
I just started taken ALC and was wondering how much do you take and how long did you have to take it before you seen the pain subside? My pain seems to come and go??? Some days are better than others and some days no pain at all. Is this common? No change in curve but I seem to see a change in the size and location of the plaque. I don't know if this is normal?? I have been on TV for about 9 weeks.
Fighter,
I take about 2 grams, four pills in the morning, and four at night(each pill is 250 mg), usually after I eat food otherwise you will get an upset stomach. I also take 800 IU's of vitamin E daily as well. Some people take 3 grams daily of carnitine and I may move up to like 2.5 soon.
I also sometimes mix in some pills that are ALC with alpha lipoic acid, you can get these at walmart. I"ll take two of those pills that are mixed in the morning along with two regular ALC pills, then I"ll do it again at night, I do this every other day, with the off day just being all normal ALC pills four in the morning, and four at night.
Within a week or so I noticed my pain had subsided.
ComeBackid
Kevin,
The IONO has the PHYSION study showing that it is effective, however the study done by Dr. Levine shows that in some cases saline had the same effect as verapamil, hinting at the fact that maybe it is the electrical current that is triggering the healing process, and transdermally the IONO is doing nothing. The DMSO is supposed to be a very powerful drug that does go very deep into the penis, I've never heard of anyone who said they used it and it worked, however Barry whos one of the directors of the Peyronies Disease Advocacy I believe, says hes talked to many people who used the DMSO with thackers formula and saw positive results.
Your right in that there is little documented evidence to date, I think for years it seems like the urologists did little experimentation or exploration and just kind of prescribed vitamin E and TV without investigating the products. It does seem now though that the research is picking up in the form of IONO, these traction devices and VEDS, and of course with auxillium doing the collaganese injection trials. The bigger our group grows the more research and documented evidence you will see. However, for now we have to use common sense and share information with each other to see what we think works, this may require some experimentation.
ComeBackid
Gentlemen,
I do have to throw in my two cents on the transdermal methods. It makes no sense to believe that a local transdermal delivery of verapamil or most other pharmacologic agents would have a significant local effect. Hawk made great points. Most other transdermal therapies act systemically.
Peyronies Disease affects the tunica albuginea. Between the tunica albuginea and the verapamil or any other substance is a vastly intricate system of capillaries that take up almost anything in the interstitum surrounding them and deliver it systemically. So I too am very skeptical.
I also have to mention once again that most of the research in Peyronies Disease is focus either on 1) mechanical stretching of scar tissue to restore shape and function and 2) the eitiology of Peyronies Disease (i.e. why do some people get in and some don't).
We have discussed VED's and now the mechanical stretchers and they seem to be moving forward with studies and have demonstrated efficacy. But, on the other hand, TGF-B1 has been implicated as a very suspicious player in the development of Peyronies Disease. Dr. Tom Lue (try "UCSF Urology" in a search engine), if you look at his CV, is investigating this angle and has been prescribing Pentox (Trental) to his patients since 2002 along with Levine in Chicago and many others. Trental has demonstrated pharmacologic action against TGF-B1. It also has action against PDE which is a similar mechanism to Viagra, Cialis, etc.
My point is that we all come to our conclusions on Peyronies Disease therapy based on our specific situation as well as the evidence in front of us. But, for what it's worth based on everything I've seen, read and heard to date, my money is on future treatments! But for now, mechanical devices such as VED's seem to be promising and make sense if you evaluate the situation logically. The next best thing I've seen is Pentox because we know that it is active against TGF-B1. Third is probably Acetyl-l-carnitine based on the sparse and questionable studies out there but also the experience of forum members here.
Treatments in my mind I wonder about are the Vitamin D angle which was brought up somewhere on the forum (use the search feature here on the forum and type in "Vitamin D" to find the discussion), and although I think it would be extremely unlikely and I wouldn't play around with overdosing Vitamin D because of toxicity possibilities, it can't hurt to supplement at a reasonable dose especially if your diet is like mine...but it still doesn't seem likely. I also still take PABA because the mechanism proposed is as an anti-fibrotic and I think I will take it at least while I still believe my plaques have not stabilized. I still take one 400mg Vitamin E daily but honestly don't see any merit in taking 1200mg like some uro's prescribe, not only because it has never been shown to have any effect on outcome but also because it has been shown to have other detrimental side effects in too high of a dose! I also take L-arginine 1g three times a day.
Guess I just wanted to get my opinion out there. Keep fighting!
roadblock
anyone ever thought maybe vitiman E causes Peyronies Disease? I mean I have read some stories of people saying they took vitiman E for a year and the bend just got worse. What if E starts trying to heal the scars and your body naturally starts trying to fight the healing process or something and builds more scar tissue up. I mean I started taking E about 10 days ago and im getting this slight ach in the peft side of my penis that I never had before E and plsu when I do jumping jacks I get a sharp pain in the left side of the penis. How do we know E isnt making things worst?
Is anyone taking this drug currently besides wantitstr8? What does the drug do just increase bloodflow all the time, or is it an ED type of drug?
What is the different between pentox and neprinol? Anyone currently taking these medicines are you having any side effects?
ComeBackid
I had an appt. with my urologist to ask for Pentox. He cancelled at the last moment. I have another appt. a week from Friday.
Liam, be sure to take information about Levine's results treating Peyronies Disease.
ComeBackid, It is not an ED drug in the sense of other ED drugs. It thins blood and increases flow through small vessels. You would have to use caution with any blood thinner with a VED of you will draw blood through the capillary walls. Blood can cause scar tissue. Neprinol is an enzyme and I have yet to see on shred of objective evidence that oral enzymes work.
Hawk,
I remember you telling me to be careful with blood thinners and VED usage. But isn't vitamin E a blood thinner? That means one should not use vitamin E and a VED?
ComeBackid
ComeBackid:
If you will recall our telcons, I cautioned you several times that you should be extremely careful not to overpump with any VED while going for Peyronies Disease therapy or for an erection.
As Hawk says, the small blood vessels breaking and blood leakage into the outside tissue can and will lead to further trauma to the penis. So, again, use caution with the VED and if any pain or discomfort is experienced at any time, stop, relax and use less pressure when you resume the pressure.
Regards, Old Man
I recall our telecons and understand not to overpump.
My question regards vitamin E, Hawk had previously told me if your on blood thinners you can't really use a VED because it will draw small dots of blood to the surface. My question is that vitamin E is a blood thinner so that means one should probably not use this with a VED?
ComeBackid
ComeBackid-
As far as side effects, Pentox and arginnie both can cause stomach upset...I get a similar effect from Neprinol. Unfortunately, I take all 3 meds at once with food. I spend the next couple hours with an upset stomach. Usually culminates with a trip to the crapper. One of these three meds doesn't let you hang onto your food for long. I'm not aware of any problems using the VED with Pentox...Levine didn't say anything. Of course he has always advised caution with the VED. Do not overdo the treatment otherwise you will bruise.
Please remember that Pentoxifylline modifies and affects the production and release of TGF-Beta, a proinflammatory cytokine (cytokines are molecules that modulate or cause inflammation).
TGF-BEta is postulated to cause some of the inflammatory cascade of Peyronies Disease by stimulating collagen gene expression, which is turned off by the use of Pentox. One problem is that using it after the fact is sort of closing the barn door after the cows get out, but insofar as inflammation is an ongoing process, it can help turn off and reduce the ongoing (increased) production of collagen. That, in turn, might allow the natural "turnover" process to allow for degradation of existing collagen. I think that a combination therapy of turning off production (Pentox) coupled with a degradation promoting drug like Verapamil may prove most helpful.
Obviously, much clinical work in the form of blinded studies needs to be done.
Tim
I should add that Pentox also modifies the release/production of Tumor Necrosis Factor (TNF) which is also implicated in inflammation (though not as robustly connected to the process of Peyronies Disease as it is to other chronic infectious inflammatory processes).
Quote from: pudder135 on June 15, 2006, 09:09:51 PM
I recall our telecons and understand not to overpump.
My question regards vitamin E, Hawk had previously told me if your on blood thinners you can't really use a VED because it will draw small dots of blood to the surface. My question is that vitamin E is a blood thinner so that means one should probably not use this with a VED?
I am not sure I said you cannot, but rather to be very careful. There are many natural blood thinners. Most common are garlic, ginko, ginger, vitamin E. Vitamin E is probably a bit less of a blood thinner than the others but it tends to effect people differently and it has a measurable effect on my bleed time at 800 iu. It is also contraindicated above 100 iu if you are on prescribed thinners. Thinners or not, If you draw red pin-point dots to the under layer of skin, you are using too much vacuum.
Hawk,
Thanks for clarification. I've been reading up on vitamin E and some studies had stated that even 800IU's is not good for a person and is way to much vitamin E, because it can lead to Coronary Artery Disease (http://en.wikipedia.org/wiki/Coronary_artery_disease). It seems like there is still much debate on just how much vitamin E one should take, because of this I've lowered my daily dosage to 400 IU's instead of 800 IU's. There are also many different kinds of vitamin E, heres a brief summary (http://lpi.oregonstate.edu/infocenter/vitamins/vitaminE/) I found on them for anyone looking to read up on the different kinds.
ComeBackid
If you take these supplements, check this site and tell me if you can find a cheaper price. Note, the price indicated is for 3 bottles not price per bottle.
http://www.puritan.com/pages/file.asp?xs=CE55DE0AD46841FA8B68AD9CAFBCBD98&PID=4515&CPID=8238&np=1
I've had Dupuytren's for over 10 years and for several of those years I took Vitamin E in large amounts. I had the stuff running out my ears and, you guessed it, it had absolutely no effect on my Dupuytren's.
My suggestion: let's all just forget about 'E'. Use that $10 a month to kick back in a nice coffee shop, the caffeine has better-documented health benefits than 'E'.
You know what they say about opinions, every body has one. I absolutly agree. I take E. I took it befoe Peyronies Disease I still take it, but I would bet the farm it has NO impact on Peyronies Disease. Any one that is taking E as their Peyronies Disease treatment, has no treatment. Every clinical study done has confirmed that. They also have confirmed that it does not help reduce scaring or speed healing of cuts. In fact it sometimes slows scar healing.
It is amazing how a medical doctors with scientific backgrounds can continue to prescribe vitamin E. I sometimes think Vit. E and Potaba are given to make us feel like they are doing something for us. They know the chance of them helping is about nil. Just me venting.
I took vitamin E back when I first had peyronies cause I was to embarrased to go in and see a doctor. I can't say it ever did anything for me and now 7 years later I'm a lot worse than where I began back then.
ComeBackid
"So, Dr. Dick, what about vitamin E?" I ask.
"Why, you got dry skin?"
Subject closed.
Vit. E worsened my condition I think, I stopped 30 hours ago and already a slight improvment in the dent, or so it seems...... it could just be a good day.
I do not think that the "natural history" of Peyronies Disease is compatible with what you are going through. A dent sures sounds like Peyronies Disease to me, but I do not see such a problem coming and going within 30 hours of stopping a fairly innocuous vitamin like E. It is more likely related to the firmness of the erection (some such dents stretch out under tension and "disappear"), and that could be related to a lot of things (ie relief over stopping vitamin E!).
Again, you need to stop speculating and see a doctor.
but can a normal penis have dents in it sometimes? Or does it have to be Peyronies Disease? Sorry im trying to see a URO and I dont expect anyone to diagnose my condition online. It seems everywhere I read that a dent is related to Peyronies Disease for sure, yet I know there are pretty normal penises out there probably that get a slight indention in a area from time to time, or is that not possible?
HowCanThisBe,
I am not a medical person or an expert on Peyronies Disease. I have however owned a penis for 56 years and i have paid pretty close attention to it. Other than Peyronies Disease, and normal growth during adolescence, my penis exhibited no changes over the 35 years in between. I am very puzzled by your changing descriptions except to say I am convinced that Tim is correct. A variation in the degree of erection makes a significant difference in how clearly a deformity is revealed. At 60% erection, I display no trace of Peyronies Disease. At full erection I have a very significant "dent" under one side of the base and a slight righthand curve about 2/3rd of the way to the end.
I am sure the variations you are seeing are variations in degree of erection. Changes in penile structures cannot possibly be changing that rapidly, especially vacillating from worse to better and back again.
Also, Vitamin E is a nutrient, not a drug or foreign substance. I cannot imagine it having any impact much less a dramatic, immediate impact.
I have a question for anyone who can respond...I have been real sick now for almost 9 months with stomach problems and am in a lot of pain..I still believe that i have a parasite but now need a Cscan this week to make sure...My question is,,,my URO just prescribed Potaba, about 18 pills a day...Can anyone who has taken it tell if it gives you much pain in the stomach? I'm afraid to start taking it as i am in so much pain already...My most recent case of peyronies is located on top of my penis but recessed back in my body behind my pubic hair and so he wanted me to take potaba as nothing else would be able to reach it.....I'm not in a lot of pain except when erect and i try to ingnore it while having sex with my wife.....I have a good size nodule of plaque....
If anyone would like to reply here or on my private e-mail i would apprecieate it very much.....Thabnks so much for your time and help....kimo
Kimo,
Almost everyone I've talked to who took that potaba said they got really sick quite often. I think that is one of the side effects of it. I don't think there are any real studies showing it works. My urologist offered it to me back when I was like 19 and I rejected it.
ComeBackid
Not according to my doc, who "wouldn't recommend" it. You have to do a "cost-return" analysis and then decide for yourself. Personally, the cost is too high based on the projected return on investment. But then again, I really don't like being nauseous 24 hrs a day and barfing every few hours. Your results may vary.
And this from a guy with a medievil traction device attached to his penis at this very moment.
Took Potaba for two weeks. Had to stop because of stomach upset.
I didn't take Potaba because the Urologist told me he didn't think it really helped and said I would probably have severe stomach issues. Also, just FYI, I had to go in for some stomach issues and took me 5 different docs before they found the problem(s) Look up Celiac disease if you still have problems after going off the Potaba if that's what you decide. My 2 cents worth. Zig The Twig
Kimo:
Potabo did not affect my stomach in any way, but I was told that it must be made of cast iron. During the early stages of my most recent bout with Peyronies Disease, I took 13,000 of the pesky pills before it was realized that it did nothing me or the Peyronies Disease.
So, apparently some have resistance to it and others don't. I tend to think that most will have a stomach problem with it.
Old Man
I was prescribed Potaba for Peyronies Disease back in the early 90's and consumed pounds of the stuff. Results: upset stomach 24/7 and no effect on Peyronies Disease whatsoever.
Hawk, thanks for the reply. Ok well I do realize what your saying. I just noticed in that period that I got alot worse rapidly. It might have been a one day thing or something, but that was a week ago and I havent looked near as bad since I took E even at full erection. Im saying, could I have a slight dent and I be normal? I mean by slight that its not noticable by sight almost, just barely. You can barely feel it also. Like couldnt a dent come and go? I have had Peyronies Disease if I have it for 4 years now, for all those years it has been pretty much stable. I just dont wanna take E if I noticed a diffrence when im fine right now and can still have sex fine. So im saying, if I start denting up more and all I will have to get treatment, but right now a girl couldnt even notice that I have a problem, the only thing that I notice is a slight bend up and small dent on side plus my head doesnt get as full as it did before 4 years ago. Besides that im stable right now I think, but I got to wait and see what happens. So couldnt I just get a slight case of Peyronies Disease and not get much worse? Sorry im trying to be postive thinking here, I just have read some stories of guys with slight Peyronies Disease and it doesnt really effect thier sex life. Thanks
so cant one get Peyronies Disease and still have a fairly normal sex life? I mean arnt there people out there walking around with Peyronies Disease that dont even know they have it? Or will I eventually be really bad or what? Thanks
YES
YES
OR WHAT
Thanks guys for all the input,,,it's will help me to avoid more problems which i don't need....I wished i would have ask sooner before i paid for the stuff..Oh well, another lesson learned...I have been schedualed for a Cscan this fri. so hopefully they will find out whats wrong with me..They are going to do the nuclear stuff on me through my stomach and in my veins...I will let you all know what happens.......kimo
Kimo
Just went through that test last year. Did a stomach emptying and gall bladder function test (that was the winner). Good luck! Hope you have cute techs. ;) That always makes a test easier.
Here is confirmation of what we already knew. Sorry if this is a repost. I've started including 2006 in all my searches. We've read so many papers it's hard to keep them straight.
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1442-2042.2006.01270.x
I have had Peyronies Disease for about 6-8 months and its in the initial inflammatory phase. There is a small amount of plaque and slight curvature but not enough to really care about. What I do care about is the pain. It way pretty bad and Ive been to PCF and Uro several times since it all started. I have taken several different types of anti-inflammatories (Naproxen, Mobic), antibiotics(At first they thought it could be prostatitis), pain meds, vitamin E, Bromelain, GLA, Vitamin C, ALC, and I even ordered VIP cream from that IMO shady website actionlove. None worked. If anything helped it was GLA w/ ALC but not enough to mean a whole lot. But my Uro recently prescribed Potaba for me since I am in the initial phase and it has worked. I have been taking 1 gram every 8 hours for the past two weeks. The swelling is down most of the time and when it flares up it only lasts a few minutes and the pain is almost all the way gone. The plaque has reduced in size some and I cant really notice a change in the curve but like I said before it wasnt that significant to begin with.
For all of you who has said it gave you an upset stomach... My doc warned me of that and he said to take it after a meal and to open the capsules and mixed it with a tall glass of water. I have been doing that and my stomach hasnt been upset at all.
So hopefully this is good news for all of you guys....It is for me! I would tell anyone in the initial stage to definitely at least try potaba for 6 weeks or so if you stomach will allow you. And even if you aren't in the initial stage if you are willing to try stuff and have the cash b/c Potaba is kinda expensive. For those of you who had an upset stomach maybe you can try the way I have been taking it and it might help idk......but this is the first thing that has worked for me and believe me its exciting!
Also as a warning PABA and Potaba aren't the same! I believe you have to take alot of PABA to equal the effects of Potaba....Someone correct me if I'm wrong though.... I also think potency, quality may be an issue with PABA but I am not sure.
Hope this helps!
Just thought I would report that I persuaded my Uro to put me on a course of Pentox after I emailed him Dr Lu's study. I have been taking it 3 wks and the tenderness in the lump seemed to go overnight and the bend seems to have decreased by about 15 degrees. I will report back any other developments.
Awesome, any good news is well received, I'm glad for you. And please keep us informed of any other developements.
Regards,
Barry
This is a 2003 study that pointed to the use of Pentox and l-arginine. It is worth a re-read because of Dr. Lue's case study. The point that was of interest to me is it appears either pentox or sildenafil was used with positive results.
QuoteBoth sildenafil and pentoxiphylline stimulated fibroblast apoptosis within the TA.
As most of us know apoptsis is cell death
I'm thinking, I can't get Pentox, but, I can get Viagra (sildenafil). Here is the link to the abstract.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14996430&dopt=Abstract
Liam,
Have you tried to get pentox?
My uro said it is an off label use. He is not interested in prescribing it. :(
Liam,
If I recall, this is the same doc that has little time for your Peyronies Disease discussions. I say shop around. first ask your family doctor. If he says no, find a uro that will. I think that is my next move. My family doctor was pretty agreeable to prescribing trazodone for night-time erections. I will try him on Pentox. If he won't go for it, I will try to find a uro that will write the prescription.
My family doc is great. He actually found my PC. He may do it. I have been threatening to call Dr. Hellstrom at Tulane. I asked about daily Viagra. He didn't like that idea, either. He did write a prescription for 100 mg Viagra with 12 refills. I bought a pill cutter. ;)
Liam,
If your uro does not like daily Viagra after a prostatectomy I think he is uninformed and behind the times. We have 5 local urologist (one group) in my town. All of them, Mulhall, my NY surgeon, ALL recommended daily Viagra.
Even my GP asked if they had recommended it since he had heard it was becoming very accepted to do so.
This sounds interesting! Do you take 2.25g of L-Arginine and 10mg of Sildenafil? I was wondering what does the L-Arginine do? Has anybody tried this with any success? Also do you think that STAMINA-RX would be the same as taken Sildenafil? Supposedly it has sildenafil in it?? Check it out on GNC website under mens health. It dose not list it as an ingredient but I was told that YOHIMBE has sildenafil in it and it has YOHIMBE in it. Can anybody help me out here?
Quote from: Liam on June 27, 2006, 07:59:38 PM
This is a 2003 study that pointed to the use of Pentox and l-arginine. It is worth a re-read because of Dr. Lue's case study. The point that was of interest to me is it appears either pentox or sildenafil was used with positive results.
QuoteBoth sildenafil and pentoxiphylline stimulated fibroblast apoptosis within the TA.
As most of us know apoptsis is cell death
I'm thinking, I can't get Pentox, but, I can get Viagra (sildenafil). Here is the link to the abstract.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14996430&dopt=Abstract
I copied this fro m the FDA website. Notice the date (2003). Rest assured it no longer has this ingrediant.
FDA Talk Paper
T03-48
June 20, 2003
Media Inquiries: 301-827-6242
Consumer Inquiries: 888-INFO-FDA
FDA Public Health Advisory:
FDA Warns Consumers Against Taking the Following Dietary Supplements-SIGRA, STAMINA Rx and STAMINA Rx for Women, Y-Y, Spontane ES and Uroprin
Today, the Food and Drug Administration (FDA) is warning consumers not to purchase or consume the following products: SIGRA, STAMINA Rx and STAMINA Rx for Women, Y-Y, Spontane ES and Uroprin, manufactured by NVE, Inc., in Newton, N.J. and distributed by Hi-Tech in Norcross, Ga. These products, which are being marketed as dietary supplements, actually contain a prescription drug ingredient that poses possible health risks. The products are being sold over-the-counter and are claiming to increase stamina, confidence and performance.
FDA has determined that the products actually contain the prescription-strength drug ingredient, tadalafil. Tadalafil is the active ingredient in Cialis, an Eli Lilly product approved in Europe to treat male erectile dysfunction. An interaction between certain prescription drugs containing nitrates (such as nitroglycerin) and tadalafil may cause a drastic lowering of blood pressure. There is real danger that this product may be taken by patients taking nitrates since erectile dysfunction is often a common problem in people with diabetes, hypertension (high blood pressure), hyperlipidemia (high cholesterol), ischemic heart disease and in people who smoke.
FDA's Office of Criminal Investigations, with assistance from FDA's New Jersey and Atlanta Districts, executed concurrent federal search warrants in Georgia and New Jersey after finding these dietary supplements.
Consumers who have used these products and have medical concerns should consult with their health care providers.
All consumers should be aware of the risks associated with these products. [/b]
This FDA warning reminds us of why we benefit from having regulations in our society. It chaps me to see a "natural" solution promoted for erectile dysfunction when all they are doing is inserting cheap and covert drugs to make it work. It promotes the fallacy that a certain natural ingredient helps erections, while simply bypassing all safety and health concerns (I am not saying that all natural cures are bunk).
Incredible...
Tim:
You are right about natural herbs, drugs and related substances that can help with ED. Several indian tribes in South American, according to visitors there, have been using these substances for decades and perhaps centuried to "cure" or add to their libido.
I personally know from my childhood experiences growing up when modern medicine was in its infant stages that we used "home remedies" to great success. These often included so called "patent medicines" which were simply just preparations from herbs and/or other natural products.
Many thanks for your constant contributions as a doctor to this forum. Wish that I could my current uro to begin participating here. She has been thinking about it, but has a family situation where they are dealing with cancer in one of their children. Perhaps when this problem is resolved, she will be able to join us here. She has considerable experience with Peyronies Disease, ED and other related men's health problems.
Again, thanks for your participation here.
Regards, Old Man
This may be a good time for reposting this link
Here is one very objective information site on herbs. They have no monetary interest in sales and are very research oriented. They include any known clinical studies, and I detect no pro or con bias.
http://www.mskcc.org/mskcc/html/11571.cfm?RecordID=548&tab=HC
This link takes you directly to the Yohimbe section of the site, but you can search any herb once there.
So guys, am I to understand that you have to have a prescription to get Pentox? I could have sworn that you could bye it from Canada without a prescription? Can you guys guide me on a link to gain more knowledge about this drug.? I don't want to waste time with searching through thousands of scams, etc.Also, is there a survey or poll anywhere some guys with Peyronies Disease that Have taken this w/ results?
Thanks
Zig
Zig, I tried to find a link to the brand Trental. Couldn't readily find one so this has the pertinant info.
http://www.answers.com/topic/pentoxifylline
Just to let you guys know, I've been on Pentox and Arginine for about 5 weeks and I am seeing definite signs of improvement. Curvature has been reduced by about 20 degrees and erection quality is as good as it was prior to the onset of Peyronies Disease. I am also using traction and taking Neprinol and Vitamin E. I have also had 5 Verapamil injections...but am seriously thinking about stopping those at my next visit. Not sure Pentox is a miracle drug but I really think it is helping. I also think traction seems to be helping. I have found some lost size (I think from traction). I'll keep everyone informed on progress, not sure this is a miracle "cure" but something seems to be getting this under control...from a timing perspective, I can correlate the improvement to beginning Pentox, Arginine, and traction. I may just be seeing the natural progression of my particular affliction, however, I'll take the coincidence...
Did anyone hear about this new form of carnitine, I read about it on the old forum.
Propionyl l carnitine
The claim is that it has better efficacy?
ComeBackid
Found this on the web check it out... (Propionyl L Caritine)
http://healthlibrary.epnet.com/print.aspx?token=af362d97-4f80-4453-a175-02cc6220a387&chunkiid=35551
Hey ComeBackid... how are you doing with Acetyl-L-Caritine? Are you still taken it? Is it still helping? How much are you taken? Could give an update!
There have been several studies out of Italy by Cavallini that have looked at PLC and or ALC. One study looked at the efects of both carnitines in combination, compared to varicocoelectomy in the treatment of oligospermic infertility. It found that sperm counts increased over time with the drugs (they also used a NSAID that is not easily found in the states), and that the results wre comparable to those of surgery on the varicocoele (a dilated vein draining the testes - when that happens it affects sperm count).
I found the study interesting for several reasons. First, I have a Varicocoele, and my fertility has gradually waned over the past 20 years (pregnancies in my twenties but none after 35). I have also seen a gradual loss of size in my testes. It turns out that an untreated varicocoele can lead to gradual changes in testicular health, such that not only does sperm production decline, but that also testicular production of testosterone declines (faster than usual). Both seem to have happened to me (and could have been prevented by having been properly treated when I was diagnosed at 33!!!).
What caught my eye is the role of inflammation (a common denominator with Peyronies Disease) and how the researchers chose the forms of carnitine, and NSAIDs. They referred to data I have not found or read yet suggesting that other studies had suggested a combination would be better than just ALC. Yet the data are elusive.
Being of an easily triggered investigative mind, I was willing to see if simply taking a PLC / ALC combination helped, but could not find any reliable or affordable source of it here. Similarly, the NSAID they used in the infertility study (and of course, the relative value of a drug for one condition may not apply to another condition) is not found here. It is "Cinnoxicam" which should be a metabolite of piroxicam, which goes under the trade name of Feldene. Given that Feldene has a higher number of serious side effects, it has not gained wide acceptance or use compared to ibuprofen (Advil). It is approved for the use in rheumatoid arthritis, I think, and has a niche carved out there. Since it had a sobering toxicity profile, I decided to stick with advil for an NSAID.
Reading these data is hard, since sometimes they refer to PLC, and other times to it as just "L-carnitine". It left me not sure of what they had used, or why. One can also read Cavallini's article on this in our archives:
https://www.peyroniesforum.net/index.php/topic,286.0.html
Tim
Thanks Liam for the link. Wantitstr8, any side effects in particular? I have insomnia and don't want to make it worse by taking Pentox at night. It also can cause drowsiness. Can't be drowsy working on equipment. Your thoughts on this?
Zig The Twig ???
QuoteJAMA -- Arginine Metabolism, Pulmonary Hypertension, and Sickle ...Ingested L-citrulline is much more effective than L-arginine in raising plasma arginine levels for arginine-derived NO production.2, 5 Furthermore, ...
http://www.pnas.org/cgi/content/abstract/102/38/13681 -L-citrulline and L-arginine supplementation retards the progression of high-cholesterol-diet-induced atherosclerosis in rabbits
L-citrulline may be more beneficial than l-arginine if I am making the right inference from these sources.
I'm taking both. ::)
HI All,
I am interested in using pentox but my doc just won't prescribe it for me. Does anyone know of any reputable internet vendor that sells the stuff?
Cheers.
My sincere question: Is there any such thing as a reputable internet vendor of prescription drugs and how legal is it?
Soxfan,
I am in the same boat. I think a reputable vendor would not sell it without a prescription. I am going to Dr. shop.
Good Luck and let us know if you get it.
Quote from: Hawk on June 29, 2006, 09:49:17 PM
My sincere question: Is there any such thing as a reputable internet vendor of prescription drugs and how legal is it?
Hawk,
Yes there are legit over seas internet vendors that sell certain goodies and anti-aging supps without an rx and I have used them in the past. Sadly, I haven't found any that carry trental/pentox, but I will keep looking. ;)
Cheers.
I haven't noticed any side effects from the Pentox other than the often cited upset stomach if not taken with food. As far as insomnia, I don't sleep well anyways, never have, but the Pentox has not made any noticeable difference. I have not noticed any drowsiness with the medication. I should note that I started the Pentox, Arginine, and traction at about the same time. I really think all 3 are helping but cannot really attribute any degree of improvement to any particular regimen. Frequency of nightime erections has improved, overall quality of erections are significantly better, the turtle effect is gone, and I have "found" about half an inch of the 1 1/4 inches I lost when I got this crap. As I said earlier, I'm pretty encouraged...
I'm assuming you need a prescription for Pentox?
ComeBackid
Fighter,
Still taking ALC, two times daily for a grand total of slightly over 2 grams each day. I have no yet closely observed any erection changes, I will be finishing the last of my TV in just a few days then I will analyze any changes once I"m off that medicine for a few days, as it increasese bloodflow. Lost pain a few days after taking ALC, doesn't seem to have brought any size back thats for sure. I will report in detail in about a week. Got my IONO machine set up and will be moving on to that next.
ComeBackid
wantitstr8, The night time erections must be facilitated by the arginine. I am not on the pentox but I take the l-arginine. I started having the nighttime erections nightly after about 3 weeks. I then started back on Viagra and it worked. It may be coincidental, but, I ain't changing anything ;). In two week it will be one year since my prostate surgery. I strongly believe the arginine has helped with the ED. I hope it is helping with the Peyronies Disease, too. :)
BTW, I have had the same success with the traction.
Hi everybody. I've been taking vitamin E and C for some time now. I don't think that they have made any improvement, but it hasn't gotten worse. I started using a VED about 3 weeks ago and noticed a difference in erection frequency(good). I have since started to use a water pic shower head to direct hot water onto my penis. As soon as I exit the shower, I use the VED. It is too soon to notice any difference at this point. I just started to take ALC last night. I will keep you all posted as to my progress as time goes by. I've also thought of taking baths in epsom salts, it can't hurt! Also been thinking of making a potion of epsom salts and aloe lotion to smear onto the crooked digit. If anyone has had any experiences with the use of epsom salts, I'd like to hear how you are doing, and any formulations that you might be using. Thanks everybody for your treatment strategies. Maybe a combination of supplements combined with heat and the VED will yield some favorable results. I figure it this way, all of the supplements are harmless. They may not cure me of my peyronies, but the rest of my body will be healthier! The use of all of these "treatments" takes time and effort, so they are probably helping to keep my demented mind occupied too! Keep the Faith, Blink
Blink, I use the same strategy for the VED. I think it helps to have a "warm up". I strongly recommend l-arginine. Look up the percent of men who obtain erections post radical retropubic prostatectomy. I think it is helping me beat the odds.
I am taking orally" l-arginine, l-carnitine, l-citrulline, (what the "L" ;)) dhea, Korean red ginsing (liquid), and ginko biloba. As a side note, my energy level has increased.
I am also using a transdermal with most of the same ingredients as above. Can't see any immediate results from the transdermal unless you get it on your balls and it burns like hell. It has alcohol in it.
So far all nutritional supplements.
Now for the Rx: Wellbutrin and Viagra.
Liam,
My local (awesome) natural health food store has DEHA with a huge sign saying that in the owners opinion (PHD) that no one should take this product and stating several reasons. She then adds that they carry a limited supply only because customers are insisting on it against all advice. My point is that having had a hormonally fed cancer, I would be VERY hesitant to play with hormone levels, especially without a hormone profile being monitored by a competent and conscience doctor.
I mention this because I was not aware if you were informed on these issues. I figures even if your are, someone else may not be.
Here is a link to a short, very light weight article but there are many thousands of more detailed articles on the internet. http://www.philkaplan.com/thefitnesstruth/dhea.htm
AAARRH!! Liam, what the "L" is right! I got the idea of "warming up" before using the VED from one of your posts. I thought that if I could mix the MS with some plain old aloe it would be a lot safer. Thanks you guys for the input. Keep coming back! Blink
How much L Arginine do you tak daily? 500 mg twice daily? Do you know if you can take it with ALC?
ComeBackid
Hi All,
I have found a source that sells pentox without an rx. They ship all over the world and I placed an order for a two months supply.
cheers.
http://www.myoverseasrx.com/drugs/pageMaker.html?drugBrandId=658
WOW! Good Luck.
l-arginine 1000 mg three time a day
Hello all.
I was diagnosed with Peyronies around two years ago. My doc right off put me on vitamin E. (Surprise?) I got some slight benefit and then somehow I decided to upgrade a bit from the synthetic version to a natural product. The benefit increased a bit. Several months ago, I read on another site that the 'full spectrum' natural product is best. So I spent the money and upgraded again with considerable skepticism. I have been really amazed at the results I have seen from the premium product. I only wish I had started out with it instead of the cheap synthetic stuff. The difference in benefit was like night and day for me. If you haven't tried one of these premium versions (I am using Yasoo's NeoMedica Integral E), I would suggest giving one of them a try. Make sure they contain all 4 tocopherols and all four tocotrienols. Yasoo's product, along with a number of other peyronies products can be purchased on the Peyronies Disease Institute site for a very reasonable price. And for the record, I am not associated with that organization in any way other than the fact that I purchased the Vitamin E from them and found much of the info on their site helpful.
Also, I seemed to get some benefit by getting off of metoprolol (Lopressor). There are indications that metoprolol can actually induce peyronies and I didn't feel comfortable continuing with it and my doc was happy to switch me onto something else which works just as well and doesn't have the peyronies conection. So if any of you are on metoprolol, you might want to give that some thought.
I am also taking other supplements which may or may not be helping the peyronies. If I notice anything else as dramatic as what I experienced with the vitamin E I will be sure to post it.
- George
1 gram daily. I take 500mg in the morning and at night. The lower dosage seems to lessen the stomach upset I sometimes get with the supplement cocktail. Also, doses above 1 gram daily can increase flushing and cause something akin to the male version of hot flashes...maybe I'll up the dose in the winter when the added heat might be welcome.
edited for more detail
I have had those "hot flashes" in my face and mostly in my ears. I stood in front of the AC vent the other day. I never associated it with l-arginine. I just figured it was Viagra. But, it has happened several hours after taking the Viagra.
I think I just had a revelation :).
Quote from: pudder135 on July 03, 2006, 03:00:08 PM
How much L Arginine do you tak daily? 500 mg twice daily? Do you know if you can take it with ALC?
ComeBackid
ComeBackid, I admit to knowing less about L-Arginine than anything I have ever taken. I seem to think it may inhance erections. I know Dr. Levine sometimes recommends it Two weeks ago I went to GNC and bought 500 mg capsuls. I often take 2 in the morning, 2 at noon, and 4 at night (with food). It must increase blood flow independent of the erection response because I clearly hang heavier and longer especially after the night time dose of 2000 mg. Soooo, I take upto 4000 mg daily with 2400 mg of ALC.
I just found what appears to be a good information site on L-Arginine. Check the entire site. It has a lot of information.http://www.arginineresearch.com/L-Arginine.htm
Hawk,
How do you divide the dosage for ALC?
Hawk,
Wow, thats a lot of L Arginine, what is the recomended dosage for L Arginine for peyronies, or is there no exact recomended dosage? I noticed at Wal Mart L Arginine is much cheaper than ALC so I suppose I can down the stuff like candy and go through bottle after bottle. Right now I"m taking slightly over 2000 mg of ALC daily and mixing in some Alpha Lipoic Acid and ALC combined pills. I think the recomended dosage for ALC for peyronies is 2500 mg.
ComeBackid
ComeBackid,
I've always seen between 3-6 g daily in equal doses. I heard someone say to take extra at night like Hawk is doing.
Quote from: Liam on July 03, 2006, 11:38:50 PM
How do you divide the dosage for ALC?
I take 1000mg am 400mg noon 1000mg pm of ACL
hey all, I am a little new to this thing...but I have recently got to the point to where I want to do something about it. I just wanted to know what would be one of the best things I could take for supplements to help this problem? ~ feel free to email me or reply any suggestions~ thanks!
Ryan-
Welcome. Like the handle.
My favorite supplement is l-arginine. I am considering upping the dosage to the same as Hawk.
This is just what I take. I am encouraged that it may help.
I also will continue to take l-citrulline and l-carnitine.
We look forward to your participation.
Liam
I just went out & bought some L-arginine & acetyl L -carnitine..i was able to find 500mg capsules for L-arginine & 400 mg for acetyl L carnitine. So I should take about 2 of per day of l-arginine & 2 of alc??..should those doses be spread out over the day..like every 12 hrs? ..& what do they exactly do ???
thanks for the help! ~Ryan~
I to have the 500 mg L Arginine pills, I take two in the morning and two at night.
For the ALC I take a total of 1000mg in the morning after food and 1000mg after food at night, they can be mixed in with the L Arginine, or not , doesn't matter. Don't worry about how much is in each pill, just aim for a total mg dosage of 2000 mg for L Arginine and ALC, after a few weeks I will up my dosage 500 mg on each, than after another few weeks I will up anothe r500mg on each, eventually I'll be at 3000mg of each daily.
ComeBackid
I copied this from the web site Hawk recently posted.
QuoteDosages for Nitric Oxide:
Adequate dosages of L-arginine required for ADNO (nitric oxide) are 3 to 6 grams per day divided into three equal doses. Example: 2 g mid-morning, 2 g mid-afternoon, 2 g evening.
What is ADNO? L Arginine is a treatment for peyronies but I'm confused by the comment " L Arginine required for ADNO (nitric oxide) ?
ComeBackid
thanks all! i will give that a try and keep you posted~
Ryan~
ADNO - arginine derived nitric oxide
In a laymans understanding, l-arginine is a precursor to nitric oxide. Nitric Oxide is what causes smooth muscle in the blood vessels of the penis (and other places) to relax. This increases blood flow and, in turn, improves oxygenation and the removal of CO2 and other waste products.
This is the same basic principal that allows the "big three" ED drugs to work.
It is believed by some increased bloodflow may improve the symptoms of Peyronies Disease.
Here is a link to one of many article I have found. It does not address l-arginine but, does a good job of explaining how NO is used for an erection.
http://www.hopkinsmedicine.org/press/2002/MARCH/020318.htm
Since taking L Arginine now daily I definately notice increased bloodflow to my penis, this can't be a bad thing at least I don't think, did you notice this effect as well Liam?
ComeBackid
ComeBackid,
L-Arginine has helped big time IMO.
Liam,
I just watched my penis grow overnight in size from the L Arginine, how do you know its not the L Arginine causing your penis growth rather than your traction? My erections are bigger as well, this stuff definately increases bloodflow. I'm glad I found something to use to increase bloodflow other than topical verapamil at $270 a tube. Didn't you say you started to get natural erections after awhile of being on the L Arginine?
ComeBackid
For a year and a half I have been taking just about all of the supplements that are discussed regularly on the forum. It is hard enough to be sure that one is really experiencing "some improvement" at any point, let alone that any particular supplement had anything to do with it.
I was taking Vitamin E for decades BEFORE I ever got Peyronie's. As others have pointed out, how can a vitamin that failed to prevent something actually be it's cure? Granted, I was limited by the trends in Vitamin E as it changed over the years from synthetic (DL), to natural (D), to mixed tocopherols, to hi-gamma mixed, to Ester E, to mixed tocopherols and tocotrienols .... The price goes up each time the marketers convince us that NOW they "have it right". I susoect that any benefits that the rare patient attributes to Vitamin E would have occurred anyway. One person's anecdote does not an experiment make.
As for other supplements, I can say I have found Arginine to increase the likelihood of moderate nocturnal erections (or at least the ones that wake me up, which is one consequence that I don't like.) ALC is usually even more expensive (the powder form, though inconvenient, is cheap) and I haven't observed anything helpful about it regarding Peyronie's. In fact, I notice more difficulty sleeping if I've taken it too late in the evening.
Long ago on this forum I also expressed skepticism about the fixation on increasing blood flow. Sure, some experts say it helps but they have yet to come up with a case where it REALLY made a difference for anyone's primary Peyronie's symptoms after so much time and so many patients. I keep reminding myself that it was blood flow that delivered everything that my body needed to build up the plaque in the first place. One day, those same experts may conclude that the "healing" supposedly promoted by blood flow may be dwarfed by the negative consequences it enables, at least in the early active phase of Peyronie's.
So why do I still take supplements despite my skepticism? Because, though my case remains bad (about 80 degrees up), as long as my functionality and size/girth SEEM to not have lost quite as much as some other members have (so far), I have nothing to lose by continuing except money.
Kevin,
I was on vitamin E for awhile right after I had my injury trauam which caused my peyronies. I did seem to have some positive effect from the vitamin E, my penis seemed spongier or softer, today it is hard and shrinking.
I also notice the ALC makes me wrestless and keeps me up at night, this is one of the side effects of it. After taking ALC my pain subsidied and my curve reduced moderately, however I seem to have shrunk more, so I can't tell if more plaque came on the other side canceling out the bend, or if it was actaully the ALC. I continue to take ALC and L Arginine daily, along with Vitamin E.
ComeBackid
ComeBackid:
Since you have continued with Vitamin E but report that the earlier benefits are no longer coming, it sounds to me like the initial improvements were unrelated to that supplement. The active phase of Peyronie's is well-known for rapid changes, both good and bad, including the elimination of pain after a couple of month no matter what the patient does. You'll never know what governed your own early changes. You happened to have been taking Vitamin E at the time and were aware that some people expect it might help. It's hard to resist reaching conclusions on slim evidence when there's nothing else to go on. Heck, I was eating corn flakes several times a week through my early stage of Peyronie's but I'm not about to give Kellogg's the credit nor the blame for what was happening.
I have never seen any overnight improvement. The observable improvement I've had is in ED, but has taken a while. I just bought a powder form of l-arginine. A half teaspoon equals 1.5 gram, no more horse pills. I increased my dosage yesterday to 1.5 g three times a day. It seems to be much easier on the stomach. I mix it with a half cup of water and then chase it by rinsing the cup with a half cup more.
Today I am increasing my dosage of l-citrulline to 1200 mg daily.
I am stopping Vit E, DHEA, Korean Red Ginsing, and Ginko Biloba. I haven't really had any problems with any of them. I was having stomach upset from too many pills :).
Most of the "improved blood flow" theories are elaborated here on the boards, not in the medical literature. It is clear that sub-optimal blood flow is associated with the development of Peyronies Disease - witness increased incidence of Peyronies Disease in diabetes and vascular diseases. It is also true, IMHO, that those conditions have fewer erections and less firm erections, and *that* may play a role in the development or progression of disease.
A common thread that I see is that firm erections seem to hold this disease at bay better than not getting erections.
Diabetes has poor blood flow and erectile dysfunction. Vascular disease has poor blood flow and erectile dysfunction. Prostate surgery has nerve damage and poor erections. All can be associated with the development of Peyronies Disease. So it seems that it is possible that getting hard erections can help prevent progression of disease. Perhaps it works simply by stretching the tissue out and keeping it "flexible" (probably the wrong term). God knows that when I do not stretch on a daily basis, it is harder to sit cross legged or to touch my toes.
Also, I look at data in other arenas like tissue expansion surgery. If a forehead can be "stretched out" with a tissue expander, such that it can then cover a wound, why cannot a firm nodule or plaque be gradually stretched too?? http://www.utmb.edu/otoref/grnds/tissue-expand.html
So "blood flow" (carrying nutrients to tissue) may not be as important as "getting hard and stretching out tissue".
AND, don't forget that ALC, vitamin E and others similar agents are anti-oxidants. If oxidative injury is the trigger for the formation of a wound (remember this is not a normal tissue response) than it makes sense to try to move that basic tissue function towards a more non-oxidative state. That is NOT dependent on blood flow to tissue (thoughm again, poor blood flow is bad and creates oxidative stress) - at some point enough blood is enough. Rather it is is the alteration of the microenvironment at the cell membrane level where all these changes occur. Many agents that improve blood flow also are anti-oxidants - so I think it is easy to attribute causality to an agent for the wrong metabolic reason.
Just my two cents worth..
Tim
Tim,
Your argument seems perfectly reasonable.
In terms of Vitamin E, I did some very careful observation and most certainly noted an effect from it, and that effect was much greater with the latest type premium product containing all eight toco's. My observation involved repeated changing the amount and type of vitamin E and then observing the effects on my erections during the time period immediately following. What I admit to being unclear on concerning vitamin E are whether or not those benefits are long term in some way or whether they are basically just treating the symptoms short term.
As for metoprolol/Lopressor, I would add that ALL beta-blockers should be suspect for people with Peyronies and most doctors are not aware of this even though this is very old news. In particular, note these citations: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=7327618&dopt=Abstract
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstract&list_uids=231377&query_hl=7&itool=pubmed_docsum
In response to Kevin's comment about the "payload" carried by the blood, one can get into the whole issue of mental stress, aldosterone and resulting inhibition of plasmin, the body's enzyme for disolving excess plaque. Hypertension, as well as other conditions can also result in excessive releases of aldosterone. I think that this is important, in that if your blood is filled with a plaque friendly chemistry, no amount of vitamin E or other such approach is going to do the job. I am currently using two approaches to deal with this factor. First of all I am using aloe vera. I take two aloe vera soft gels a day, one before lunch, another before bed. They are dirt cheap. Aloe vera is known for its ability to diminish scar tissue. Taken internally, it has been shown to inhibit bradykinen (a smooth muscle inflamitory agent) and prostaglandin. Additionally, it has been shown to reduce bad cholesterol, increase good cholesterol and reduce blood sugar. I did not initially take it for the Peyronies, but rather for an intestinal ailment. I also had severe heart palpitations which my doctor was unable to treat without resorting to draconian means. Within 24hrs after taking the aloe, the palpitations stopped and stopping and starting the aloe turned them on and off like a switch. I've now been on the aloe well over a year and eventually realized that the aloe might be helping my Peyronies as well. Only the soft gels provide the above benefits, but they are very uniform and consistant, available from a wide range of manufacturers. They also are effective transdermally. If you cut open a softgel and apply the contents, you will notice the effect on the plaque right thru the skin. Aloe has an irritating effect specifically on scar tissue and causes it to shrink and harden. This effect is transient and after some hours the plaque will again soften to its former state. It has a similar more subtle effect when taken internally, but my experience is that with continual use, the plaque eventually softens even with the aloe. I have no proof at this point that this is a positive process, but I strongly suspect that it is and thus view aloe very positively with regard to Peyronies. As for the safety of aloe, there are a few minor interactions mainly with steroids and people with diabetes or hypertension should be aware that it can affect their numbers, but it has been used for years as an herb and there are really no high profile safety concerns. Beyond that lies the infamous Neprinol and its constituent ingredients which are all purported to address the issue brought up by Kevin.
As for Tim's post, I have also found maca to be a very interesting supplement in regard to Peyronies. For those of you who might not be aware, maca is a Peruvian radish that has very intresting effects on the body. It has been consumed as a food for years by the people of the Andes and is thus pretty much guaranteed to be safe. How it actually works has really never been precisely figured out, but it is able to modify the body's response to certain hormones with actually changing the hormone levels themselves. It is suspected that it acts indirectly on the pitituary gland but this has never been proven. What is known is that it can make a man more sensitive to testosterone without actually affecting testosterone levels. Similarly it modifies a womans response to estrogen. It, like aloe, is dirt cheap. I am currently taking a gram a day. The results are subtle, but generally include noticibly increased libido, and more frequent and intense erections. There are some studies and they show that it significantly boosts fertility for men and thus probably generally addresses sexual health in terms of prostate, testes, etc.
So I just throw these thoughts out to consider, since these supplements aren't normally associated with Peyronies.
Diabetes is also associated with Dupuytren's. I have Dupuytren's, don't have diabetes and I've never noticed decreased blood flow in my hands, nor have they been used any less over the years. Likewise I always had perfectly normal erections in the time leading up to the development of Peyronie's disease. My circulation is fine and I'm in pretty good shape for my age.
The trauma theory doesn't work for me, either. There's been no trauma to my hands.
It does seem that Peyronie's disease has multiple causes. I think the link to Diabetes might be something more subtle than just reduced circulation.
what would be the suppliment that best showed results for curing peyronies disease?? ???
Quote from: Tim468 on July 06, 2006, 10:33:52 AM
Most of the "improved blood flow" theories are elaborated here on the boards, not in the medical literature. It is clear that sub-optimal blood flow is associated with the development of Peyronies Disease - witness increased incidence of Peyronies Disease in diabetes and vascular diseases. It is also true, IMHO, that those conditions have fewer erections and less firm erections, and *that* may play a role in the development or progression of disease.
The red colored section of this post is worth reading as showing reduced blood flow as a possible causative factor of Peyronies Disease along with the physiology of the process. https://www.peyroniesforum.net/index.php/topic,130.0.html
Also, the benefits of hyperthermia (if we accept their are any) may well be associated with blood flow since the scaring documents under our "Resource Library" indicate that bandaging a wound seems to reduce scaring because of the increased warmth provided by the bandage. This warmth again could suggest that it increases blood flow thus reduces scaring. Combined, it looks like an emerging pattern. Conditions resulting in reduced blood flow also result in an increase incidence of Peyronies Disease. Treatments such as hyperthermia have been show in very limited studies to positively impact Peyronies Disease and increase blood flow. With bandaging, heat may be the factor in reducing dermal scaring. finally, a specific mechanism may be identified as the causative factor that is triggered when there is a loss of oxygen rich blood.
Does this mean you will not get Peyronies Disease if you have good blood flow? Obviously not. Slam the car door on your penis (not meant to be used a an instructions but as an illustration) ;D and you will likely develop Peyronies Disease. So, reduced blood flow may well be one causative factor, just not the only causative factor. Car doors would be another one (I jest)
I believe in this theory. I got my peyronies from getitng hit head on with a soccer ball at age 15, the blow definately gave me peyronies. I think a lot of guys who end up with peyronies injure themselves during sex without even noticing it to later. Say for instance girl on top position and she just injures a man without him knowing. Perhaps him continuing to have sex causes more swelling and then the pain comes. Bottom line is girl on top position is a dangerous position. I think for people who get fibrosis conditions in other parts of their body and peyronies, that is just genetic, and their tissue just turns fibrotic. If it was being caused by any one pill or one food, many more people would have these fibrotic conditions.
I think I would remember a car door. :o
Maybe there are several causes for fibrosis. But maybe once you have fibrosis, the treatment would be the same regardless of what triggered it.
I wish I could read and understand this entire paper, as it talks about possible genetic triggers:
http://www.nature.com/cgi-taf/DynaPage.taf?file=/ijir/journal/v14/n5/abs/3900873a.html&_UserReference=0A01016746B4EAC35BE6C490BB3341CB2995
And another puzzling connection - here's a data sheet for the drug phenobarbitone. Under "adverse effects": "Very common: development of Dupuytren's contracture, frozen shoulder, Ledderhose syndrome, Peyronie's disease, fibromas and general joint pain."
Wow! Stay away from that stuff. But what links these conditions to something like pheonbarbitone? Andjust phenobarbitone itself, without a car door, loss of erections, or microtrauma.
When investigating nerve sparing for prostate surgery, I found research pointing to blood flow deficits as the cause of ED in patients having had prostate surgery. The linked article explains research in this area in a concise manner.
At the very least, there seems to be a positive correlation between blood flow insufficiency and ED and/or Peyronies Disease.
http://www.maleinfertility.org/prostatectomy.html
Hello everyone, I agree also that this is a scar, a injury. I'm new on here, first post.
I have had peyronies now for about three months. Hour glass, curve 20 degrees. I'm 52 years old. I have seen many things in my day, and have been involved in sports and have had my nicks. Had to deal with scar tissue, it ended my kickboxing in the 80's. I use dmso ect....
The urolgist I went to several weeks ago was quite suprise that I knew more about the condition than him, and that is from my reading this forum as a guest and also from other research. I did research for a living as a Investment Banker, so I have been able to collect information fast. I have read now several hundred hours on the subject and have try many of things you have on here, but of course you have much more experience and I do believe we all are in different stages of this conditions.
This has been tough for me, as you. I went through a divorce and I think from being depress and not taking care of my self, getting hit in the groin in jiu-jitsu and then pulling on the little guy in self pleasurement, started the whole thing. I stayed in denial for awhile. Didn't go see the pecker checker for awhile(two months).
I would try to clean up my act, eat right, ect...after divorce which I didn't want, I was smoking and having a few beers, not eating as good as I should, I know we can't look back and beat ourselves up, but I want to introduce myself.
I have the topical verapamil now, I don't believe it will work. I have been taking certain vitiamins ect...pretty much what everyone on here is trying. I have thought about taking hgh with amino acids, I had luck with that at one time with a old injury. I also have thought about dmso and sski and caster oil, I read about the thacker formula also. I just remember the dmso from years ago, not a great experience as far as taste and smell your body gets. But when it comes to my little buddy, I would do anything. I have lost 2 inches, I was 7 so it is 5 and hour glass, plus a hell of a hinge, I haven't had sex, and avoid dating, been mostly reading on this for the last couple of months.
I think I might do a thirty day cleanse, there are many sites with natural treatments out there, I had experience with a man who wrote a book, No uncurable dieases, he has a thirty day program, expensive $450.. I don't think you need this one though, basically fruit and vegies and lots of different juicing. I believe in yoga and pilates to build you immune system and it increases blood flood. My problem now is to get focus and take control of my health. I have been in good shape, but after the divorce which was recent, right before the deformed pistol, what a shock seeing that:(. I wanted to wanted to stop by and say hi, and thanks for your focus and bringing a place for us to go, I'm Calling All Angles on this one, I have been good and I pray for you all, along with myself:). I will keep you all posted on what I try, like I said, the msm, and all the other things you have been using, been there, but not for much time and I don't think they are the ticket. I will do a liver cleanse this week, I believe that is the best way to help with inflammation. And the 30 day diet, dmso and sski, I'm looking at with a couple of other treatments, I will heal the body first, I have done this before, pilates is remarkable, read about Joseph Pilates, I was really into it and it builds ones core, especially in the groin area, yoga also, he invented it (pilates) to cure his illness. I know this is a injury, scar tissue is a @##$$$@%, but I don't give up on anything and I plan on helping myself and anyone else along the way......So latter my brothers in arms....I'm Calling All Angels!!!!!!!!!!
Some very informative and intriguing posts to read! It is why this forum is so helpful to me.
Just remembered to mention that wogonin has been associated with "improvement" in Peyronies Disease related tissue culture (in vitro studies) and I am now taking it as a supplement. Efficacy? Who knows? But I am willing to try.
The bit about Maca suggests commonality with the effects of carnitine on fertility and erectile function, and plaque. The effects of aloe seem related to anti-oxidant qualities. Just guessing - I wish I knew more about this field (and I need to remember that I do know a lot... ).
I am also re-embarking on a more holistic approach to my health and well-being. I have always liked Andrew Weil's book "Eight weeks to optimal health". He recommends pushing the levels of vitamin C up on a daily basis - he is not a huge fan of tons of supplements, but believes that C and E are important. I am also drinking almost no coffee (none caffeinated) and am now drinking green tea. I noted that when the coffee went away, my peyronies got worse. I do not think that the caffeine was the issue - rather, I believe that the headaches went away from stopping caffeine, and so my daily use of Advil dropped to almost none. I started taking advil and the sense of advancement in my Peyronies Disease slowed to a stop.
The trouble with paying attention, just like George's trying to figure out the effects of different kinds of vitamin E formulations,is that we are not always "right" in how we understand what happens. But with alertness, and a willingness to experiment, I see a bunch of men who are *trying* to get better - and that alone makes this forum worth every second I spend here.
Tim
Guys and Gals,
I made a post below where I just noticed one of my intended "hyperthermia"s was a "hypothermia". Now maybe no one read it or did not read it careful enough to catch it but... If you did or when you do catch such things, please send a personal message to the writer of the post so they can change it. We owe it to each other to protect the forum from obvious blunders especially when they change the entire point of a post.
New members have enough problems to sort through without being confused by misspeak. Rereads of my posts reveal I frequently make significat typos and misspeak. Especially when dozing off 3 times during a post. :)
Thanks
Rico,
We are glad that you registered after months of reading as a guest. Considering the ability you now have to see some other areas of the forum, to send private messages without divulging an email address and much more, I am sure you are glad that you took the 60 seconds to register.
Also thanks for contributing by making a post. That's what makes a forum work.
I'm thinking of starting the dmso and sski with arnica oil, also a 30 day cleanse, with yoga and pilates, has anyone tryied the dmso and sski arnica oil, I have a couple of sites on the net, I don't think it is acure all, but it seems to help from the reading. Thank you.
Rico
Rico,
Are you talking about thackers formula? I have a bottle of DMSO, but never heard of sski arnica oil, what is that? I have yet for one person to tell me thackers formula works, Barry has dealt with that and claims that it has worked on many people. Some people seem to question the safety of putting DMSO on your penis, what do you think of this Rico? Has anyone on this forum used thackers successfully? I don't understand what ingredients are supposed to break down the plaque either.
ComeBackid
ComeBackid,
I think that dmso is a delivery system plus has anti inflammatory properties, and the castor oil also acts this way, the apple cider vinegar like the above soaks into the infective area, I believe they are so strong and they cause the injured area to remove the old tissue because it is new and can't substain in this mix. Seems simple. I don't know if the tissue in the case of peyronies can gain its elastic properties again, this is the real problem with are condition. I can have a scar removed and a dent in my arm, but in my private part that needs to inflate, is more of a problem as I see it. I think one can help it to be better, like from a 5 to a 8.. the VED seems to make sense to me, because you are st recthing the damage tissue to take in more blood, if you do it slow and not too much, it would have memory and become one in itself. Once again I'm thinking out loud. Once again I haven't gotten my mind or body yet into the right state of mind, this is the biggest challenge of my life. There is no magic pill, I know that, and I know for sure that scar tissue or any injury is there for life, but to what degree is the key. Me and all my friends in wrestling and karate never fought 100%, maybe 85% at most, because you were always injured, but the mind can make you 110%, your mind can heal along with your faith, and putting ones body into the best ability to cope with your aliment. To me if you used sski and dmso to soften the plaque and then pull on it it, it would have memory, but once again, I haven't try it yet....like I said the dmso I used years ago, my me smell and bad breath and I blister on the skin, I would put ice on it to reduce swelling....
Rico
The pharmacology of aloe vera is quite a fascinating study, here are a few interesting examples:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstract&list_uids=14967890&query_hl=12&itool=pubmed_docsum
Note the effect of aloe on blood flow apparently due to the fact that it literally lubricates the vascular system.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstract&list_uids=2864002&query_hl=1&itool=pubmed_docsum
How is that for a stunning study?
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstract&list_uids=9030888&query_hl=1&itool=pubmed_docsum
This is just one study investigating some components from aloe. Aloe vera is loaded with exotic substances.
George999,
Do you take aloe vera or use a gel or cream to rub on your penis? Does it increase bloodflow? I've been searching for something like TV, that will increase bloodflow, simply to keep the blood flowing down there. I want something inexpensive and that I can rub on or take a pill, the TV would make your penis burn and itch, and its clear it did nothing to the scar tissue, but with the increased bloodflow, this can't be a bad thing in my opinion.
Rico I will look up DMSO and the things you talk about. As I have previously stated, Barry is a big promoter and supporter of the thackers formula, I never tried the stuff myself and have no idea how well it will work or if it will even do anything.
Old Man in my opinion is credible in his promoting of the VED, he works at a cancer center and helps out guys who have impotence along with peyronies. The idea is that one can stretch their plaque back to its original size, Old Man will tell you himself that he does not believe one can gain enlargment through use of a VED if they don't have peyronies disease. The whole concept is to stretch the plaque following the 26 week protocol, its a very slow process, however some have posted length and girth gains after as little as a month.
Quote from: Rico on July 08, 2006, 06:51:03 PM
The Old Man seems real though, and the strecthing makes some sense to me.
Trust me, I am 85% sure the VED is a positive treatment and 110% sure that Old Man is real.
Hawk,
I'm glad you agree with this. You seem like a sharp man. The only thing I can comment on is that I believe from working with injuries is that the scar tissue is around good tissue, this is where one has to be careful, not to go to a extreme amount, like the Old Man says, take it slow. Once again the reason I like the thought of VED vs traction is that you have pulled in the warm blood, and for guys like me with hour glass, this makes more sense also in that you fill up the whole hose sort to speak, vs just pulling down on a cold muscle in a static way. Once again, look at how people in all sports gain flexibility today versus years ago, warm up then stretch, don't hold for a long time, like VED. I also believe in memory in all tissue, even scar tissue, it can be molded. I would like your opinion on sski and dmso and the thacker formula. Thank you.
Rico
The real question is what if one is calcified or thinks they may be calcified such as myself, but yet they still want to do VED therapy. Will the pulling only tear or worsen the calcified tissue? Can calcified tissue be stretched? Does anyone even really know what calcified tissue is, is it collagen? When I stand up and walking aroudn my penis shrinks and becomes hard, however when I'm sitting down and more bloodflow comes into my penis, it is soft and bendable, I really don't know if I'm calcified, and thats why I'll be going to see Dr. Mulhall soon for the ultrasound, I believe the VED can stretch scar tissue over time.
Rico,
Look back on the post that explain how heat is used while the penis is extended.
Stretch and heat.
I'm still tolerating the powdered l-arginine better than the pill.
ComeBackid,
From what you have said, I would think your scar tissue is in this state from circulation. When you move around it is more loose. That is why it is better to stretch once your muscles are warm or now runners stretch after they work out. People use to hurt thereselves in the old days doing it before the run or workout. Getting blood into the area first, Once again that is why I think VED makes sense, pulling in the warm blood. I think that a warm bath with epsom salts would be good also before. or doing some yoga or pilates or any exercise, heat up the body for a good stretch. Yours is stiff when idle, just like any scar tissue that isn't getting blood flow in the area. Does this make sense to you? Do you work out? How is your circulation, smoker ect....I know Pilates and Yoga might be a stretch for you, but look into, it is the source. Read on the internet about Joe Pilates and how he transform his week sickly body into a Greek god. This is a true story and the new your city ballet and now many athletes use it.
Rico
I don't smoke, and I've quit all alcohol intake. My penis when I walk around becomes hard and shrunken when flaccid, if I sit down and massage it, blood fills up and its very lose and spongy like a normal penis. When I start to get a semi erection pass this, it bents 35 degrees to the right and becomes hard, then if I continue to stroke it to a full erection it striaghtnes out, but is very hard on the sides, harder than normal erectile tissue, and I can't keep an erection for very long. I want to do the VED therapay I just don't want to make it any worse than what it is, assuming it could be calcified. I just don't know what to do at this point.
ComeBackid
Heres a link with Joe's pic.
http://www.thepilatespractice.com/joseph_pilates.html
I, myself, am working on the status of a Greek god.
DIONYSUS (dye-oh-NYE-sus; Roman name Bacchus) was the god of wine. ;)
Rico,
I usually massage my penis and get it spongy for a little, then I do the VED workout, 10 cycles, holding for about 8 seconds on each time, the manual says hold 5-10 seconds. Afterwards I usually take a very warm bath and soak for awhile.
You said epsom salt bath, what do you put into your bath, is their an epsom salt powder? How much do you add in? Where can one purchase epsom salt to put into a bath?
ComeBackid
Thanks for the information on epsom salt, I will get some from CVS.
I just started the protocol, I"m also doing IONOtophoresis treatments daily. Right now I'm in the smallest cylinder, there are three of them, you have to follow the protocol and do the right cylinder each week. The smallest cylinder doesn't let your penis extend in length as far as it could, its meant to be this way. When you pump it up its very full, but so far , when done using the VED, its just shrunk back down to normal.
ComeBackid
It is magnesium sulfate. It is crystalline and often comes in a pourable carton (ala milk). It is a soak for tired muscles and it's a laxative when taken internally (mmm, mmm, mmm). My grandparents used it for both purposes.
As I said before, it made my flowers bloom.
Here is a link.
http://www.drugstore.com/qxp80249_333181_sespider/rite_aid/epsom_salt.htm
[whenever anyone has an ailment]
Gus Portokalos: Put some Windex on it
My Big Fat Greek Wedding (2002) ;)
Rico,
If your only three months in, I would go with the IONOtophoresis machine, it is most successfull when treated early on. You'll want to get the pads for drug delivery from IOMED though, don't use the cups that the physion set comes with. I would continue taking baths with epsom salt, I'd also take the vitamin E, and Acetyl L carnitine. If your plaque is stable I'd use a VED on it and try the old mans protocol, if it is still changing I wouldn't apply stretching forces to it.
ComeBackid
ComeBackid,
Thanks for your advise, do you know anyone who has had success with this? I know the machine is about 1,000. bucks. I read they think it might be the current that helps. I had a Dr. Ho Massage that work I think like this, and work great on injuries I had. I try it on my little guy and it didn't work, I think made worse, hard to tell with this injury, there are no muscles in there, just tissue and nerves. Tell me if you know anyone that has any success in the early stages with this way of getting the verapamil into the tissue. Thank you.
Rico.....did you read up on sski mixed with dmso? interested in your thoughts, I think I read someone on here rzz use it. I read another site on the net where the doctor used dmso,sski,arnica oil mix....kind of like the thacker dmso, avc, castor oil I think this could work with VED, because it would soften you up, or with traction, just food or chemicals for thought:)
Rico
Rico,
Assuming the studies are all credible, and I have to be skeptical now because of the Dr. Fitch study promoted by PDLabs. Assuming the studies are credible IONOtophoresis will drive verapamil into the tunica tissue. Tim told me he used it on a new lesion and it was successful, but not working on older lesions, its not working on my hardened tissues either. The key with IONOtophoresis is to use it as soon as possible, I'm about 6 years overdue for one of those things. The doctor I got my machine from in Orlando, Florida, told me that some people were using VED's and made their curves worse, he said first you have to soften the plaque before you can use a VED to "remold," your penis as he says. He says you can't just use the VED by itself on plaque, but it has to be softened, this doesn't really match up with what Old Man has stated through his years of experience, as he did not use the IONO machine himself. I don't want to tell you what to do, but Wantitstr8 had said Dr. Levine reported use of traction is ok with non calcified plaques, and calcifications that are strippled throughout the plaque, but if you have a plate of calcification, stretching will not work. I doubt you have that yet only three months into this terrible disease. I'd definately get the IONO if I were you and start with that and see if it does anything for you. The PHYSION unit is expensive, but seems to be safe. Likewise I'm not a doctor and just offering my advice, you should see a urologist, however I have found many in my area to be less helpful in this forum, and their diagnosis consisted of telling me "you have peyronies disease."
ComeBackid
ComeBackid,
Thanks for the information on the IONO, I'm looking into it. I know I have to start something, I'm at the stage 3 months to make the move. It is so hard to figure out what to do other than the life style change and diet and vitiamins ect.....VED, traction, IONO, these I'm looking at. If I didn't have to buy this machine(cash from the divorce is tight), I would use it right now, my doctor isn't very proactive, go figure:).
He thought topical verapamil and potaba, I took the verapami, use it, but don't think it is worth much more than bengay or something. Doesn't get to where it needs to. I'm going to work today, make some money to buy all of this for my new hobbie, Monday I'm starting the holistic approach along with more discovery on the subject of IONO and VED and the sski and dmso arnica oil combo, did you read anything on this and please let me know if rzz is still on here and if he still uses it and if he had any success, I would be interested. Thank you and have a bless day.
Rico
ComeBackid, at this point I am taking the aloe orally. I take two softgels per day. A number of companies make the softgels, they are available at a number of drug stores as well as health food outlets. All the ones I've seen have been quite standardized. I have applied it directly on my penis in the past and may give it another try. But only the the aloe from the soft gels work. This is because some of the most effective ingredients in the aloe are bitter and foul tasting and therefore they remove them from the other forms. They aloe in the softgel is also cooked and reconstituted in a fat base which essentially alters its pharmacology. Also beware of the dry form available in capsules. This form is actually a very harsh laxitive made from a different part of the plant. It is guaranteed to have an effect, but not at all the one you need or expect. Aloe also has been said to have some effect on calcium metabolism, I remember reading somewhere that it has the effect of driving calcium into the bones, I don't really know about that at this point, but if it is true, it might even have some beneficial effect on calcifications. I do know that aloe is on my short list of a few food based supplements that are just so rich with potential benefits, they simply can't be ignored. So it is one of those things I take for its long term effect rather than the kind of quick hit one would get with vitamin E or L-arginine. Also when you consider the fact it is dirt cheap by supplement standards, that just makes it a no brainer for me even if I didn't have the palpitation issue. But it was the palpitation experience that really opened my eyes to the potential benefits of supplements. I hope this has been helpful, let me know if I missed anything. I think for most of us it takes a number of different theorapies working together to gradually alleviate this problem.
In the past, the role of collagen has been discussed. I want to point out that here again there is an aloe vera connection:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstract&list_uids=9854430&query_hl=14&itool=pubmed_docsum
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstract&list_uids=9562243&query_hl=14&itool=pubmed_docsum
Another possibility of dealing with collagen based plaques with Chinese herbal preparations:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstract&list_uids=12551745&query_hl=11&itool=pubmed_docsum
I have scrupulously avoided these because of concerns regarding unwanted additives (lead, various carcinagens, etc) that they have been known to contain. Too bad that some western company doesn't sell a safety tested derivative.
I buy my aloe, liquid at a whole food store(organic), 100% certified. I have been drinking about 8 oz a day. I know it helps with inflammation and wonder if the dmso aloe gel is something to thing about.
George 999, reference your post about aloe & the 2 pub med abstracts. Cross-linking in protein structures of connective tissue such as collagen is I believe the primary process in formation of peyronie's plaque. The sometimes promoted use of Potaba (paba) to treat peyronie's is to slow or reverse cross-linking. If aloe does promote cross-linking of collagen I don't think it can be a good thing for someone with Peyronies Disease. Am I missing something? Mark.
I think it is the old chicken and egg, if you reduce the inflammation first, then the rest is a moot point. The scar or plaque has a mind of it own and once formed it seems can dissolve. The reason I think dmso might work, it has been used for years on the race track for horses, is that it reduces the inflammation to the deepest level, now if something is saturated in dmso and I'm looking into sski and aloe or arnica oil(which I think is more also for the topical relief of burning from the harsh effect of the solvent dmso), it creates a environment that the scar tissue can't substain in. It then dissolves. Now the problem at this point as I see it is getting the tunica to perform with the same elastic properties it is need to function properly during erection. Is this by lightly stretching it with traction or VED?? Maybe? I don't know, I do know if I do try this, it would be a slow and long period, Not meaning slow for long period, but low pressure for a short time, but repeated over several months. This sski has my attention. I have used dmso in the past one time in the 80's, it was industrial power and was used by the Olympic track team. I can still taste it in my mouth talking about it years later, nasty, but for my little friend, I would endure it. I would like any comments on the sski and dmso thought.
Rico
Rico, if you get the kind of aloe sold in soft gel form you will find that it will work transdermally without the need for DMSO. Also, the soft gel form contains aloe ingredients missing in the bulk liquid or gel form. These ingredients are removed in processing because of their extreme bitter taste. Incidentally, I sustained a mild injury to one of my fingers about six months ago and guess what? Scar tissue. I really suspect the cause was the beta blocker I was taking at the time. The whole epinephrine/beta receptor process is related to increasing blood pressure and blood flow in the extremities in order to increase performance and wound healing in event of injury or threat of injury. Along with that comes aldosterone which basically increases the blood components that support tissue repair. So it is not much of a stretch to see how a beta-blocker by reducing blood circulation to the effected area could contribute to scarring. Anyway, I am actually delighted with the scar in my finger as it creates the perfect test bed for trying some ideas. Right now I am applying a combination of aloe and vitamin E since I have had success with that on skin scarring in the past.
Mark, while I agree that cross-linking would seem to be problematic, one still has to deal with the overall assessment that aloe speeds wound healing and is also associated with a reduction in scar tissue. How can this be? Perhaps it has to do with this sentence from one of the studies I linked: "The results suggest that A. vera influences the wound healing process by enhancing collagen turnover in the wound tissue." Thus while aloe contributes to cross-linking, it also contributes to "increased biosynthesis of collagen and its degradation." (also quoted from the same study). And this is part of the odd effect I have noted with aloe. When I initially started taking it, it seemed to make the Peyronies worse. In other words, the plaques got significantly harder. But with the passing of time, they actually have become softer than they were initially before I started the aloe. Of course, I have been using a number of other supplements as well, but it really doesn't seem that the hardening I have experienced with the aloe has been permanent.
I would be interested in you putting sski on the scar on your finger, see what effect that has, have you had any experience with this Iodide.
Hi Rico, I don't know anything about sski at this point other than the fact that it is basically potasium iodide. And as for DMSO, I have kind of steered clear of that, a little more risky than what I am comfortable with. But if I were to use DMSO, I would probably get it from someplace like this: http://www.natural-complementary-medicine.com/Detail.bok?no=39 . I would definately not use industrial grade because any contaminants are going to end up you know where. I have enough nasty stuff in my body now without adding more. As for me, I am several years into the process at this point. I have no curve since the damage is at the very end of my penis out at the glans. But I have had a problem with reinjuring the same spot. But at this point, mainly with full spectrum vitamin E, I've been able to get it under control to the point that it is barely discernable. Of course I would like to get rid of the remaining plaque completely, so I keep working at it and trying new ideas. I too was once interested in topical verapamil, but after reading of ComeBackid's experience, I've dropped it from my list. Right now I am taking Neprinol. I really like the formulation in terms of the ingredients, but at this point it has had zero effect. Of course there response would be that you have to take more and use it longer. And those kinds of advices really turn me off. It is extremely expensive, and I simply refuse to mortgage the farm on something that is unproven and exhibits no independent research as to its effectiveness. So I will use it sparingly based on its advertized ingredients along with other things like aloe that I view as having much potential merit based on a significant amount of research. I am really into acheiving long term gradual progress as opposed to finding an instant cure. And, while I realize that whether or not something works is the gold standard in the end, I helps a whole lot to understand some of the underlying processes and so I am expending significant time and energy on that part as well. In any case, I wish you the very best! We are closer to a solution now than we have ever been in the past and all of the communication going on right here on this forum is helping that to happen. Lets continue to explore (safely of course!) and report back on what we learn.
how long would it take to see results from taking acety L carnitine & L arginine?? ???
thanks ~ ryan
If you have pain, you should see that disappear within a week to 10 days. Beyond that I have no clue since I remain unconvinced that my straightening was a result of improvement or if it was just progression that happened to curve me back in the right direction. I could flip a coin on that answer.
Much of the work with carnitine (often done in Europe - particularly Italy) mentions these three forms of carnitine (Carnitine, acetyl-L-carnitine, and propionyl-L-carnitine) - often seemingly interchangably.
I cannot find a source of propionyl-L-carnitine, and this is the form most associated with improvement in my reading of the literature (I have been able to find it in a couple of chemical suppliers - but quite expensive. I am willing to order vitamins from Europe but have been unable to do so yet.
Does anyone understand the differences between these forms and if there is a supply available in the States?
Tim
Tim 468, I recently found a source for propionyl L-carnitine HCL powder (PLCAR). It is: http://www.goendurance.com/?products_id=1961 .They state that this is an esterfied carnitine. Mark501
Rico,
For the epsom salt, I assume you can just go to like a CVS and buy a big container of it? Do you want it in powder form for the bath, or is there only one form of it? I plan to get some and dump it into my bath, I also have magnesium sulfate cream right now from Kirkman Labs in Oregon, Mark501 informed me about this, I ordered some cause it was really cheap.
ComeBackid
I was just reading a Levitra insert that said DO NOT TAKE THIS MEDICATION if you are taking....or any "nitric oxide donor" medicine. I have had little time to research that term. I know about "nito" and other heart meds but does anyone know what a "nitric oxide donor" is. I asked my pharmacist about L-arginine which I described as a nitric oxide precursor. He did not come back with anything that sounded like a confident answer.
NO donors are compounds that have the NO (nitric oxide is one nitrogen bound to one oxygen) availble to "donate" in a reaction. NO is extremely shortlived as a molecule and is usually taken back up into the donor or broken apart to its constituent parts.
L-arginine is an NO donor. When you are gradually adding different medications on, though, it makes sense to now and then step back and take stock of what the totality of your regimen is. Arginine may not do much though because it is also shortlived.
Got to run - PM me if other questions.
Tim
ComeBackid,
The epsom salt I buy in bulk looks just like salt, more like kosher sea salt. I took a long bath last night and afterwards I didn't shower, I just air dry, also you can leave your bath, and later in the morning add some boiling water to it and take another, this will save some money. I only add enough water to cover my little guy but wash my whole body in it, scrubbing with a rough cloth is good also, opens up your pours. Like anything you are going to do, read up on it, you have to believe in the healing effects. Lite a candle, listen to some music, I felt great last night and sleeped well. I can't stress the effect of a well rested body can have on healing ones body. God Bless my young brother, I will say a lord's pray today for your quick recovery.
Rico
ComeBackid,
Yes you can buy epsom salt at any cvs ect....I bought mine at a local walgreens.
Rico
Tim,
I would be interested in your thoughts on l-citrulline increasing the amount of usable l-arginine in the body. You have probably read the same research I have. I can't find the link I had to it.
Epsom salts ... what a grand idea! Thanx rico! I got mine at Walgreens for less than a buck a pound. Now all I need is an opportunity to enjoy it. Perhaps tonight (I hope).
Don't know much about it - I am reading about it tonight. Here are a few titles I read:
"L-citrulline and L-arginine supplementation retards the progression of high-cholesterol-diet-induced atherosclerosis in rabbits" (anti-oxidant activity is clearly increased)
(from an abstract) "Inasmuch as nitric oxide (NO) and L-citrulline are constantly generated from L-arginine, with L-citrulline being actively converted into L-arginine in venular, microvascular, and aortic EC, our data indicate a functioning intracellular arginine-citrulline cycle in these cells. This cycle may function to efficiently scavenge the carbon and alpha-amino group of L-arginine and to maintain a sufficient cellular concentration of L-arginine during prolonged synthesis of NO in EC." (EC are endothelial cells)
There is a study of 1000 mg of citrulline daily being done at a hospital near me - I will talk to the principal investigator and see what he knows - perhaps read his grant proposal - it will be full of tidbits I bet.
In a reply to an article in JAMA, I read: "Ingested L-citrulline is much more effective than L-arginine in raising plasma arginine levels for arginine-derived NO production. Furthermore, citrulline can be recycled to arginine via the citrulline-NO cycle. L-Citrulline supplementation at daily doses of 0.10 to 0.12 g/kg for 20 to 36 weeks in 4 children with SCD and for 8 weeks in 2 children with SCD has resulted in symptomatic improvement and increased L-arginine levels without adverse effects."
(SCD is sickle cell disease,and their metabolism of arginine is abnormal - I wonder if we with Peyronies Disease have increased arginine kinase which would lead to a more rapid turnover of arginine and thus a higher constant state of oxidative stress...)
Oddly, I see that l-glutamine inhibits citrulline metabolism in some studies, but increases it in others. So the role of glutamine in enhancing the arginine/citrulline cylce seems unclear so far.
Tim
Tim,
I noticed there appeared to be conflicting information regarding glutamine. I only had access to abstracts and thought maybe i was missing something. It all seems promising. Thanks for laying out those studies in a concise manner.
Liam
Hyalouronic acid, I have been reading that they have had success with hyalouronice injections into scar tissue, heel spurs ect....has anyone heard of this? I know this is what the body makes to help with healing, but in some cases it doesn't provide as much. The woman carried a lot of it in her womb before birth, hence no scarring. They claim this is promoted also in the infrasonic waves. But why not get it injected if they use it for scars in heel spurs. The one study I read was from May 2005. Any thoughts on this?
Rich.... Oh yes and the other one I'm looking at is colloidal silver..
My consultant on natural health wants me to take arnica 30c, calendula 30c and belladonna 30c three times a day before meals. God Bless you All!
http://en.wikipedia.org/wiki/Colloidal_silver
http://www.together.net/~rjstan/rose1.html
http://dermatology.cdlib.org/111/case_reports/argyria/wadhera.html
Proceed with your eyes open. ;)
Homeopathic use
Belladonna is frequently prescribed homeopathic remedy used to treat illnesses that manifest symptoms similar to those that belladonna poisoning triggers (i.e., high fever, nausea, delirium, muscle spasms, flushed skin, dilated pupils). These include the common cold, otitis media (earache), fever, arthritis, menstrual cramps, diverticulitis, muscle pain, sunstroke, toothache and teething, conjunctivitis, headaches, sore throat, and boils and abscesses. As with all homeopathic remedies, the prescription of belladonna depends on the individual's overall symptom picture, mood, and temperament. When used as a homeopathic remedy, belladonna is administered in a highly diluted form to trigger the body's natural healing response without risk of belladonna poisoning or death.
Results of a clinical trial performed at the National Cancer Institute of Milan, Italy, have also indicated that homeopathic remedies of belladonna can be useful in relieving the discomfort, warmth, and swelling of the skin associated with radiotherapy for breast cancer (i.e., radiodermatitis).
Please read the entire source website. http://health.enotes.com/alternative-medicine-encyclopedia/belladonna
Rico, I think that your homeopathic consultants are shooting blanks, in the dark.
Although I am an allopathic physician, I have long had an interest in alternative healing and herbology, as well as Chinese traditional medicine. There are better neatural herbs that one could turn to than the ones prescribed to you by your consultant. Frankly, I have no clue why he is recommending what he recommends.
As for natural remedies in addition to a generally antioxidant diet (fish, broccoli) and supplements like arginine, carnitine and vitamin C and E, you could try wogonin, which is found in Chinese Skullcap (Scutellaria baikalensis) which contains other powerful antioxidants. These are primarily the flavonoids baicalin, baicalein, wogonin, wogonoside.
http://www.thegreenteacompany.com/science_library/ChineseSkullcap.htm
AND
Wogonin suppresses cellular proliferation and expression of monocyte chemoattractant protein 1 in Peyronie's plaque-derived cells. Wang Z, Lin G, Lue TF, Lin CS.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14616461&dopt=Abstract
Tim
Tim,
Thank you. That is why I'm on the forum, it is nice to have some feed back. I'm still in the process of searching and the experience you bring to the table is appreciated , Liam also and the Old Man, Hawk, ComeBackid and others have been very informative. I have found some interesting information on scar tissue and will post my findings. Take care and Bless you.
Rico
Here are some additional referrences regarding "Chinese Skullcap":
http://healthlibrary.epnet.com/GetContent.aspx?token=e0498803-7f62-4563-8d47-5fe33da65dd4&chunkiid=104661
http://www.mskcc.org/mskcc/html/11571.cfm?recordid=502
What is really maddening for me as far as these Chinese herbals are concerned is the fact that 1) they have so much going for them in terms of potential benefits, but 2) they are so risky in terms of potential contaminants. I only wish that some company would sell USP verified formulations of these promising herbal theorapies. The biggest risks seem to be heavy metal contamination from environmental sources, contamination from carcinogens, and contamination with other plant species that can be extremely toxic. As Liam said earlier, "Proceed with your eyes open." Who could improve on that advice? As for me, I am staying clear of Chinese herbals for now. I just don't need another "issue" that might be even worse than Peyronies. And there is a whole lot of other possibilities out there that just seem significantly safer.
I agree George - it is what holds me back too. I just do not have a good enough sense of where I can get such things in good quality. There is a vitamin I have that includes wogonin in it, but the concentration seems low to me (compared to published data). In some ways, rather than the herb, I would love a good extract - but I would settle for a good source of the herbs itself. When I lived in Seattle, it was easier to find such things compared to PA.
I have now taken four epsom salt baths in a row, for about 30 to 40 minutes each in very hot water, and I will say I have notice some difference in my penis especially in the flaccid state. It looks healthier from the skin and color and hangs better. Erection this morning was strong, but I have also quit smoking and eating better and sleeping better also, the baths really relax me.
I have been reading more on the epsom salts and magnesium which is what it is, a sulfate. You can go to the epsom salt industry council for more information. I believe in it is not what one eats but what one assimalate, you are not what you eat, once again you are what you assimilate. Magnesium is hard assimilate and calcium pulls it away, you should have a 2 to 1 ratio, most American men have 5 to 1. Epsom salt cause 325 enzymes to react, electrical impulses for energy production which cause the elimination of harmful toxins. I bought another twenty pounds of it, I have been adding a little extra. It goes through the skin, it is not salt like I said and it actually softens your skin and reduces inflammation.
Rico
Rico,
What do you think is the minimum time one would have to soak in a bath of epsom salt to see any results, or to get it soaked in enough to soften the scar tissue? Would one 20 minute bath a day do it?
ComeBackid
Dear Folks:
If you take an aspirin for a headache, you run the risk of developing ulceration of the stomach. If you decide to avoid that risk and take tylenol, it can harm the liver. Noting comes without risks.
I say this to point out that a very hot bath is known to be associated with decreases in fertility, by damaging testicular spermatogenesis. We need to be careful when we extrapolate one study into another realm.
We know that hot water affects connective tissue differently than does cold water (hold a curly hair - if you have any - in hot steam and watch the thing straighten right out), and that the permeability of skin to iontophoretic movement is increased after warm baths. But hot water also affects our testes and fertility - so if you are in your twenties, a very hot bath might not be as good as it might be for someone who feels he is done reproducing.
So, I see two issues. One can have a warm bath with Epsom salts, and one can apply a lot of heat if one shields the testes first. I would be careful about trying to do it all in one fell swoop with very hot water.
Tim
One other point...
I did a quick search for Peyronies and Silicea and found no data to support a role in treatment. There are only 19 "hits" to my search, and none of them are anything that actually relate the two entities. Simialr results for silicic acid and Peyronies.
Herbal vendors may be willing to claim something helps, but without ANY data to support such a statement, I would be loathe to start down that road. We all need to be as prudent as we can be when discussing such matters here - I am as eager to find alternative therapies as anyone else, but we need to temper enthusiasm with real information.
Tim
Tim,
I agree with you and I said I was going to do some research and thought well if someone else did it already they would post there research that is all.
I don't believe a hot bath for 20 o 30 min. will do anything but good for someone of any age. I know epsom salts work for pain and inflammation. In my opinion this is a affordable and easy way to relax and reduce inflammation and induce sleep, I agree to read up on all the information here and then make a educated decision. Thanks.
Rico
Tim I did find that Dr. Compton Burnett M.D. received ti from Glasgow, his Uncle was the personal doctor to the Queen, he has one heck of a back ground in traditional medicine, he ended up the route of homeopathy. You can google him, his daughter was famous also, author, ABC Homeopathy Forum has the silica and states his name behind it, reading up on him, well as you will see this person is no quack. Take care.
Rico
Just a couple of comments regarding the ongoing discussion.
I just got out of the old tub from a nice epsom salt soak. I'm convinced that rico is really on to something here. If nothing else, it just makes me feel better. But I do question whether it needs to be as hot as one can take it. I rather think that pleasantly warm is probably optimal. In addition to Tim's concerns, I have to wonder how a too hot bath might effect blood pressure or other conditions one might have. As for silicia, that is an apparent referrence to a silicon type substance and that in and of itself raises all sorts of red flags in my mind. We have to remember that some things recommended in the past by some brilliant people have since been found to have toxicity. Remember that it was silicon that was implicated in all sorts of breast implant problems. So I think I will stay with the soaks. But I freely admit to being a coward. So thats my two cents.
George,
While I am not a doctor nor have I ever played one on TV.... I can say that it is recommended a pregnant woman not soak in a hot tub for more than 10 minutes. Personally I wouldn't sit in one at all while in that state.
Common sense tells me that a fetus is further away from the heat than the "sperm production center." Therefore if I were a male and had future plans of even the possibility of children I would take warm baths rather than hot, long live the little swimmers!
I love baths and what I can tell you is that whatever you have added to the water will be absorbed into your body to a certain extent. If the bath is hot it will absorb quicker, but a warm longer bath will have the same results.
Well rico, we are both right. Silica is a form of silicon, but it is also naturally present (and necessary actually) in the body and therefore probably wouldn't be considered as being toxic. For more insight: http://en.wikipedia.org/wiki/Silica The common herbal form is horsetail.
I think that it is going to be harder to get bio-active material into the area of interest through ths skin than through the digestive tract, and from there via blood to the tissue. I guess some poultices and topicals work, and I am doing iontophoresis.
However, many of the cures that you have mentioned were in favor over 100 years ago, and there is a good reason that they have fallen out of favor - they are not terribly effective, if at all.
Tim
I've read a few good reports related to ED which might be inferred to aid in blood flow. Any thoughts on Korean Red Ginseng?
I actually tried it. Unclear results. I stopped taking it for a while.
In the "Open Question" topic
Quote from: Liam on July 19, 2006, 12:25:47 AM
Hawk,
I believe the l-arginine to have a synergistic effect on the Viagra. I told my uro I was taking it and he thought it was OK (but, not optimistic).
I am going to see if my GP will change me to trazodone.
I am not sure synergistic is the proper description here. A Viagra and a Levitra taken together may increase your erection right before they kill you.
IF L-arginine is a nitric oxide donor, and Viagra warns not to take with a nitric oxide donor, then that is all I need unless an MD or pharmacist that fully understands the question gives me a rational reason it is OK to combine them.
Death and stroke are even worse on your sex life than Peyronies Disease ;)
Death and stroke are even worse on your sex life than Peyronies Disease
AMEN, BROTHER!!!
I am trying to figure this one out, Hawk. Where we have to be careful here (for each other) is in giving advice that may not be good to generalize.
Thus, a young man without heart disease may do well with arginine, sildenafil, citrulline, and god know what else, whereas someone else may find it too challenging physiologically.
My thought is that the synergy of viagra (which is a phosphodiesterase inhibitor) an arginine that donates NO might be good, and might be bad - depending on who takes them.
Tim
Hello, this is my first post. I have been reading through the forum for a while and would like to tell you about me and what I am thinking about for a treatment regiment. I am 54 years old and have been suffering with Peyronies Disease for about a year. I first notice two concave depression on the under side of my penis with a slight downward bend. This lasted about 6 months and I wasn't sure what was happening. Then they disappeared and I notice that another depression was developing on the left top side near the base. I went to the dr. and he examined me and told that I was developing Peyronies Disease but he didn't feel any fibroid or calcification. As this progressed I developed abend to the left and the head of my penis bent to the right. The pain was terrible. I have further developed a second depression on the the right side and now I have and additional bend upward. I now have a continuous hard nodule that runs the complete length on the top side. I can feel it when my penis is flaccid, and is really painful upon an erection. What an ugly sight my man is at attention.
I began a search to learn as much as possible, and found this forum. Thanks for being here. It has helped me cope with this.
I have been taking 1000mg of Acetly-L Cartinine, 200 mg of Nattokinase, and DMSO 70% lotion per day for 3 months. I also have begun epsom salt baths.
Now I am going to try serrapeptase, msm, and magnesium sulfate cream.
I just googled and found this web site and I will paste in this thread. I do not advocate any websites or products for anyone.
http://www.pyrotab.com/index.html
Just trying to learn an make the best of it. Any comments would be welcomed. Has anyone has tried this product.
thanks
Greg
If one does a simple google search on Pyrotab, one will immediately discover that what they do best is web spam. Also note that they are a commercial website advertising and 'amazing' product and yet not revealing any names as to who the principles of their organization are. And unless you can verify research via the pubmed library ( http://www.pubmed.gov ), don't believe the claims. Virtually anybody can advertise a worthless product with carefully worded PR and collect huge sums from gullible suckers. Be very afraid.
AHA! Wouldn't you know it! Pyrotab has already been discussed at length on this very site. So Greg ... check this out ... just search the page for "pyrotab" and you'll find all kinds of fascinating information:
https://www.peyroniesforum.net/index.php/topic,45.0.html
Thanks for the reply George999. I thought it looked to good to be true. Rico, I have been a little lax with the DMSO, but it seems to help when I use it. I started using 2-3 times a day primarily on the top side, full length of the shaft. It does relieve some of the pain.
Greg I see you use 70%, is this a gel, mixed with aloe or clear and do you notice any smell, bad breath ect....or blistering? I have some of the same systems as you, I had no plaque at the start, just hour glass, and then two months down the road I got a slight bend and plaque. I have never had pain till this day. I guess we are all a little different. I'm interested in dmso and sski and any topical and also VED, have you tried this? Thanks.
Rico
Greg,
Are you not using thackers formula? Just the DMSO? I believe the breakdown for thackers is 70-20-10, I'm thinking of trying it eventually, I have a bottle of DMSO here, and will be ordering the other parts of the formula in the next couple of weeks. Do you get any burning or itching from you DMSO? Any noticeable reduction in plaque or curve?
I just received my Maca (Powder Form) and I got to tell you that this stuff does not smell nor taste good! I read somewhere that it smells and tastes good but I cannot say it does. Has anybody else tried it in the powder form? I mix it with my protein drink (1 Tea Spoon=5 grams) in the mornings which is banana cream and this stuff makes it taste like yuck! If anybody out there has the powder form let me know what you mix it with.
Thanks
My understanding is that maca should have a "sweet nutty" taste and at least one vendor advertises their product as such and warns of bitter taste in competing products due to processing techniques. I take the tablet form, so I really have never tasted it until now. So I just chewed one of the tablets and noticed a kind of biting bitter component that was rather unsavory. I also have some tabs from another vendor and their product was significantly less bitter, so there does seem to be some variation in taste between products. I know that at least one other person here on this forum was trying to make the powder form palettable and perhaps they can comment on this issue.
I guess it is a bitter nutty taste?? I can't put my finger on it but it is not sweet at all. I will keep trying things to mix with it until I get a reasonable taste at of it but I am not sure if anything will help. It says you can cook with it so maybe I will try putting it on some foods.
Rico,
I am using a liquid DMSO that is 70% DMSO and 30% aloe vera with a fresh mint fragrance. I haven't noticed any bad smell and my sweetheart said that I don't smell to her. I have not had any blistering or discomfort. I am also applying a msm cream first and then the DMSO.
Pudder135
I haven't tried the Thacker formula yet, it seems to be a little cumbersome. But I will be looking into it.
I haven't noticed a reduction in the plaque yet, it may be to soon to see results. I have been massaging in the msm cream prior to applying the DMSO. I have noticed that my pain is less. Prior to the onset of Peyronies Disease I was taking hyaluronic acid with chondroitin. I think I read on one post that either glucosomine or chondroitin may contribute to the onset of Peyronies Disease. Makes me wonder.
Has anyone tried any of these pills to increase libido:
Wellbutrin- I believe one fellow on here was taking that?
yohimbine
Ginkgo biloba
Oriental ginseng
After spending a year on Lexapro, which greatly decreased my sex drive, I believe the lack of daytime erections and fresh oxygen being brought into my erectile tissue may have made my peyronies condition worse. I'm looking for something to boost my libido. If anyone knows any information or has tried any of those pills and can give their input that would be great.
ComeBackid
All that and DHEA, too. No help with libido. The Wellbutrin does what its supposed to do.
However, I think the Korean Red Ginseng may have some benefit for ED.
Check the following:
QuoteClinical efficacy of Korean red ginseng for erectile dysfunction.
Choi HK, Seong DH, Rha KH.
Severance Institute of Andrology Research, Yonsei University, College of Medicine, Seoul, Korea.
To investigate the efficacy in treating erectile dysfunction and to develop a natural drug without complications, the results of ginseng treatments are compared to placebo and other drug. A total of 90 patients with 30 patients in each group were closely followed. Changes in symptoms such as frequency of intercourse, premature ejaculation, and morning erections after treatment were not changed in all three groups (p > 0.05). However in the group receiving ginseng, changes in early detumescence and erectile parameters such as penile rigidity and girth, libido and patient satisfactions were significantly higher than that of other groups (p < 0.05). The overall therapeutic efficacies on erectile dysfunction were 60% for ginseng group and 30% for placebo and trazodone treated groups, statistically confirming the effect of ginseng (p < 0.05). No complete remission of erectile dysfunction was noted, but partial responses were reported. No cases of aggravation of symptoms were reported. AVS-penogram, which is a recording of penile hemodynamic changes during the natural erection after audiovisual erotic stimulation, is not changed after administration of ginseng. However if administered for a prolonged period of time, the cummulative effect on vascular flow might be seen. The administration of Korean red ginseng has shown to have superior effects compared to the placebo or trazodone. Definitely more researches are required to elucidate the mechanism of ginseng. The effects of saponin, extracted from ginseng, on smooth muscle of erectile tissues, can be evaluated using organ chamber or nitric oxide titration, thereby pinpointing the exact action mechanism of saponin. As more informations are available, possible breakthrough in treatment of erectile dysfunction could be arisen from active saponin extracted from red ginseng, bringing hopes to many sufferers of erectile dysfunction.
Source http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8750052&dopt=Abstract
What the Heck is Maca, guys?
Zig the twig ???
Maca - It's a southern broad tip writing instrument used for making postuhs.
I'm from the south; I can say this. ;)
Seriously:
http://en.wikipedia.org/wiki/Maca_%28plant%29
I took trazodone last night, half a pill before I went to sleep. I woke up twice being half awake and had solid erections, when I woke up today I had excellent bloodflow and my member was hanging bigger than normal. This drug is really cheap only $4 per month with my insurance copay. I think this can only be a good thing, especially after reading this out of the library here on the site:
"Oxygen levels appear to affect two substances that are important in achieving
erection: transforming growth factor 1 (TGF-B1) and prostaglandin E1. The
smooth muscles in the penis produce TGF-B1, a component of the immune system,
and one of its roles is to produce collagen. Collagen contributes not only to
structural tissue in the body, but is also the material that comprises scar
tissue. Prostaglandin E1, among its other functions, opens blood vessels and
suppresses collagen production. There is some evidence that when oxygen levels
become too low, TGF-B1 production increases and prostaglandin production
decreases. If oxygen levels become too low, smooth muscles atrophy and collagen
is overproduced, causing scarring and loss of elasticity and reduced blood flow
to the penis. Infrequent erections deprive the penis of oxygen-rich blood.
Without daily erections, collagen production increases and eventually may form
a tough tissue that interferes with blood flow in the penis."
It also reads on that nightime erections give much more oxygen to the penis than daytime erections. I also read that erections caused by a VED can't supplement natural erections, cause they bring in no fresh oxygen.
It would seem to me that if trazodone can give one nighttime erections and bring in fresh oxygen when its most pure, this could be a good thing to possibly help heal the peyronies plaque, or prevent further collagen development.
Similar findings to what I've seen, but. this paper is new to my eyes. It is very encouraging.
http://repositories.cdlib.org/cgi/viewcontent.cgi?article=3908&context=postprints
Liam,
I am not sure I tuned into exactly which of the many points you found encouraging in that interesting report of 2 men with 96 hour erections from Trazodone.
For clarification, I do want to say that the amount of trozadone needed to encourage night time erections is 1/2 of the smallest tablet needed. This is less than 1/10th the normal dosage that many patients are routinely perscribed for trazodone's primary use (depression and insomnia). Trazodone is a very common, long established prescription drug with an very safe track record. While I have no doubt that rare individuals can have very unusual reactions to any prescriptions drug, I think the key word here is rare at any dose, unheard of at 1/2 of a 50mg tablet.
I have always been interested in the lack of response to my posts on trazodone. ComeBackid now makes 4 out of 4 that have gotten the same desired results from this very inexpensive dose of trazodone.
The way I read that paper is that viagra, Pentox, and L Arginine are good in treating peyroines or preventing further fibrosis, but that trazodone is bad because the priaprism it can cause worsens or can spark fibrosis. Hawk you make good points in that I'm only taking half of a 50mg pill. Your right in that higher doses are prescribed for depression and insomnia, my doctor confirmed this.
So would there be any concerns to taking both Pentox and Trazadone. Perhaps Tim can chime in on this?
Zig The Twig 8)
Trazodone is long establised, well tested, with a long history of being safe and and well tolerated.
It is not habit forming.
I comes in 50mg, 100mg, 200mg, and 300mg tablets
Starting dose for adults being treated for depression is 50mgs 3 times per day
Even at daily doses of 600mg (in divided doses) It is very rare that it causes any level of prolonged erection is males with or without erectile problems.
It is unheard of for a 25mg dose to cause prolonged erection in anyone, much less one with comprimised erections.
At 25mg, Its success rate for restoring noctornal erections is very consistant. This is an astounding 1/6 of a beginning intake and 1/24th of a maximum intake of this drug.
It is dirt cheap
It has been used in many ED clinical trials with and without other substances such a yohimbee.
It has a few drug and alcohol interactions
http://en.wikipedia.org/wiki/Trazodone (this is one of about a million links)
Hawk, Let me reclarify as I apologize that I was not more specific the first time. 2) questions.
1)Does anyone see a problem or possible concern with for the most part, a healthy middle-aged male that has just gotten a clean bill of health except for Acid Reflux(Protonix),--With taking trazadone(25mg), Pentox(don't know how much yet), along with the other recommended supplements that I keep seeing on this forum L-arginine, ACL, etc., ALL Together.? And yes, I know there are risks involved in all aspects of life, especially with medications, and this may be a vague question, but what the heck. Most of us are Guinea pigs anyway it seems.
2) What would you tell the doctor in order for him to more willingly prescribe the trazadone and pentox. Insomnia, depression, Peyronies Disease??
Thanks Ziggy
Hawk,
The thing I was curious about and pondering was why does trazodone only give erections at night? When I woke up last night twice in my sleep I had solid hard ons, and I also gained semi erections while dozing off to sleep. When I woke up rather suddenly my erections quickly subsided. For some reason it seems that trazodone triggers erections only while your sleeping, I wonder why this is and what the mechanism is? I may try to take a half dose tomorrow during the day to see if I get any increased libido while I'm awake. Another good point hawk has pointed out that my doctor confirmed is this drug is not even close to habit forming at the dosage level we are taking it, let alone even at a higher dosage, most sleep drugs are habit forming.
ComeBackid
Hello Gentlemen:
My name is Bob Miller, a traditional Naturopath in PA. One of this forums members came to see me regarding his Peyronies Disease and told me about the forum. I spent quite a bit of time reading, and am impressed with your persistence and knowledge and willingness to help.
I want to research this so I can help him with this.
I am well connected in the natural health field and I have placed some inquiries with experts in various fields.
I am researching:
-Enzymes, by discussions with a medical grade enzyme producer,
-Herbal approaches (particularly gota kola and ginko) with one of the best herbalists in the world, and
-I am looking at if there is a possible calcium utilization problem.
If there is interest on this forum, I'd be glad to post what I hear from the experts.
By the way, I'm curious if any of you with Peyronies have had gall stones, kidney stones or bone spurs (like heel spurs)
Regards,
Bob
Hawk, I am so sorry. I should have explained my post better. I was about to go out of town when I found it and wanted to post quickly so everyone could read it. BTW, I plan on switching to Trazodone. I absolutely believe it is safe in the doses you mention. What triggered priapism was not what I found interesting.
This conclusion is the interesting part.
Conclusions. An antifibrotic regimen consisting of upregulators of NO production may ameliorate the corporal fibrosis associated with recalcitrant priapism.
This explains the connection between priapism and fibrosis.
Introduction
Priapism, if left unresolved, results in localized
ischemia to the corporal tissue that may lead
to the development of corporal fibrosis [1]. Pathologically,
corporal fibrosis is identified by the loss
of corporal smooth muscle cells and an excess of
collagen deposition...
Further conclusions:
Therefore, it is conceivable that the
antifibrotic properties of sildenafil and other PDE
inhibitors may be utilized in the future to treat
conditions for which it is currently contraindicated.
In summary, it appears that the corporal fibrosis
that is the ultimate result of prolonged untreated
priapism may be attenuated by drugs that upregulate
the effects of NO. Although the use of these
compounds to treat postpriapistic fibrosis, either
individually or in combination, is to be considered
investigational at this point, if clinically successful
in future randomized, double-blind clinical trials,
one may speculate that upregulators of NO may
be useful in the management of other conditions
characterized by fibrosis.
Source: http://repositories.cdlib.org/cgi/viewcontent.cgi?article=3908&context=postprints
This is essentially the same regimen we have seen in two other studies this year. In my excitement, I lost clarity. :-[ Hope this post makes up for it. :)
Liam
:)
Again, I would take Trazodone in a heartbeat.
Penicillin is a safe drug. If I took it I would go into shock.
There are even risks associated with aspirin.
Quote from: zigwyth on July 28, 2006, 02:08:06 PM
1)Does anyone see a problem or possible concern with for the most part, a healthy middle-aged male that has just gotten a clean bill of health except for Acid Reflux(Protonix),--With taking trazadone(25mg), Pentox(don't know how much yet), along with the other recommended supplements that I keep seeing on this forum L-arginine, ACL, etc., ALL Together.? And yes, I know there are risks involved in all aspects of life, especially with medications, and this may be a vague question, but what the heck...
2) What would you tell the doctor in order for him to more willingly prescribe the trazadone and pentox. Insomnia, depression, Peyronies Disease??
Zig, no need to apologize. I was not put off by any of these posts just not real clear if I fully understood them. I can't recommend every combination of supplement and I know you realize that and realize I have ZERO medical training. I do however take everything you mentioned except pentox. I see no contraindication mentioned for pentox. My doctor knows all my supplements and did not hesitate to prescribe Trazodone.
I n my case, I have a very good doctor that listens. He has worked with specialist hours away following my prostatectom. He removed their hemovac and catheter (with their OK). This saved me an all day trip back to NYC. My local urologists refused by the way. When I developed Peyronies Disease after taking ED injections under the guidance of Dr. MUlhall, I made the decision to go against his medical advice and stop injecting my penis twice a week. I simply explained to my doctor that I was hopeful that trazodone would give me the erections I needed for nerve healing without the injections. I specified I only needed 25 mg. per night. As a persuasion, I threw in that I had been a bit depressed at times. He quickly told me it was almost certain that such a small dose would never impact any level of depression. After listening, he wrote the prescription and said he wanted to hear from me in a couple weeks to know if it was working. I have now had the prescription renewed for another 3 months without question.
It is interesting when a knowledgeable nurse asks for your med list and you say 1/2 of a 50mg trazodone only at bedtime. Knowing the usual dosage they ask what that is for. When I look them dead in the eye and say "night-time erections, it works great" they look more puzzled. It is a major source of concern to me that well known specialists will not use this drug for what it works so well at doing. Instead they recommend all day drives to see them, hundreds of dollars in office visits, expensive refrigerated compounded drugs, and penile injections 2 or 3 times a week for erections to keep your penis healthy. All it takes is 3 cents worth of trazodone from a General Practioner. I think it makes a penis much healthier than sticking needles in it for months. Hopefully when some uros read this forum they will consider the simple solution..
They also fail to tell you that sudafed will totally cancel out Viagra's erection properties.
Zig,
I to had the same question for Hawk or anyone... is it ok to take L Arginine, ALC, vitamin E, and trazodone at the dosage of 1/2 of a 50mg before bed. Sounds like Hawk is on the same pill formula I am. I don't really see how it could be dangerous, vitamin E is just like getting your daily dose of vitamin E from foods. ALC says it promotes memory, and the L Arginine deals with the NO. I think for now I"m going to stick with this regimen, I've been on the ALC for over 3 months now and when I run out of the bottle soon I'm going to stop it anyway, along with the vitamin E. This question you pose is a good one and I suppose if Tim could chime in that'd be great... but I think hes on vacation for the week!
Quote from: rem1954 on July 28, 2006, 05:04:15 PM
My name is Bob Miller, a traditional Naturopath in PA. ... spent quite a bit of time reading, and am impressed with your persistence and knowledge and willingness to help.
I want to research this so I can help him with this.
I am well connected in the natural health field and I have placed some inquiries with experts in various fields.
I am researching:
-Enzymes, by discussions with a medical grade enzyme producer,
-Herbal approaches (particularly gota kola and ginko) with one of the best herbalists in the world, and
-I am looking at if there is a possible calcium utilization problem.
If there is interest on this forum, I'd be glad to post what I hear from the experts.
By the way, I'm curious if any of you with Peyronies have had gall stones, kidney stones or bone spurs (like heel spurs)
Bob, welcome and thanks for your interest. Due to the many conflicting opinions, people relying on weak anecdotal evidence, and even many snake oil salesmen, we try to encourage objective rational thought and scientific analysis by our members, as found at http://www.peyroniessociety.org/evaluating.htm
Since many guests and some members read quickly and are not informed, they are apt to "assume" when they see a title after a name. Can you explain some details such as your length of training, the school you attended or online institution, and your experience or training with Peyronies Disease. Do the experts you consult have any blinded, clinical studies to support their assertions? Have they ever successfully resolved Peyronies Disease in a patient or client (whichever term is proper)? Exactly what are the services and limits of a nuropath.
Thanks again, we appreciate your input.
Quote...if clinically successful in future randomized, double-blind clinical trials,
one may speculate that upregulators of NO may be useful in the management of other conditions characterized by fibrosis
This is the third report I've seen on combining l-arginine, pentoxifylline and sildenafil with a positive outcome. It looks like an interest has been sparked in the research community. I would be willing to bet there will be quite a few studies, larger, valid and reliable, already underway. Other conditions mentioned above means Peyronies Disease.
This may finally be a treatment that is efficacious.Am I over reacting? Or, is this kind of exciting?
Hi Hawk & Group:
Good questions and glad to answer them.
Classical Naturopaths are not medical doctors and do not diagnose or prescribe. I have "clients" who I consult with to find supplement programs that meets their nutritional needs.
I have a private practice, "Tree of Life Health Ministries", where my full time job is consulting with clients. I became interested in Peyronies when one of the forum members came to me for a consult. I'm not employed by any supplement company and I don't have the latest "miracle" that some MLM companies think they have.
I earned a Naturopathic degree from Trinity College of Natural Health in 1998. (some classes and much home study). I was board certified in 2001 by the ANMA (American Naturopathic Medical Association)
I work under the premise of classical naturopathy that the root cause of many problems is inflammation at a cellular level caused by lack of nutrients, a pH imbalance or toxicity at the cellular level. This goes way back to the controversy between Lois Pasteur (germ theory) and Bechamp (terrain or environment). Classical naturopaths believe it is the condition of the terrain ( the liquid of fluid the cells live in) that largely determines how healthy the cells will be.
In my office, I take a urine and saliva sample from every client and access how they are utilizing nutrients, the pH and how they are eliminating waste and acids. Based upon these numbers and current healh and health goals, I formulate a nutritional program for them. Typically, I take 1.5-2 hours to do this. Clients sign a waiver that I am not diagnosing or treating.
The reason I took an interest in Peyronies, is that from what I have learned so far, is that there is an inflammatory process gone awry somewhere, right down classical naturopathy's alley. I have no idea what went wrong or how to fix it, hence my comment that I am in the research mode.
I am fortunate that I have access to many of the top herbalists in the world and access to some top researches in enzymes. To me, it would be icing on the cake if some of them had success with Peyronies, but for now, I want to investigate the inflammation process that led to the scarring and learn which natural products they know of that have clinical evidence in dealing with the underlying issues.
As I said, I suspect an inflammatory process gone awry. I would suspect this occurs in other situations in addition to peyronies, but doens't have a debiliting effect. Some top natual health people who I have already e-mailed, may give some valuable data.
From a classical naturopathic viewpoint, we would look for what is the potential nutritional deficieny or toxicity issue. The forum member who is seeing me, there is a toxicity issue ( not effectively removing wastes). However, that's one person and may not be related to the problem at all. I am not suggesting it is.
Here's what I am currently thinking:
My best guess is that if there is a solution form a natural health standpoint, it probably has to be multi-factored. First, something that can help dissolve the existing scar tissie. Hence, I have e-mailed some of the most knowlegable people with enzymes. In my practicve I have access to enzymes only sold by health practitioners, not the lower grades in health food stores. In addition, on Sept 28 & 29, I will be attending a world-wide conference on enzymes in Houston and will be rubbing elbows with people who know a heck of a lot more than me. There's quite a bit of research now going on with enzymes and tumors. I will do my best to pick a few brains. From what I hear, some Nobel winners will be there.
Next, I would think there needs to be some nutritional support for a healing of the tissue to begin. For that, I have e-mailed Dr. Angela Haywood, a very well known Naturopath in Australia, who has connections with a brilliant herbalist, Kerry Bone. I am particularly curious about a combination of Ginko and Gotu Kola (professional strength) to faciliate the healing and promote micro circulation.
Finally, from a basic nutrition standpoint, I'd like to investigate if there may be some targeted nutrients to further support scar tissue removal and regeneration. For that, I have contaced the home office of Standard Process Labs, a well respected nutritional company since the 1920's.
So that's about it....looking for some answers and trying to solve a mystery. Personally, I love a challenge.
By the way, this isn't unusual for me....I often do independent research for clients. If I find something that is helpful great....and if not...well... I gave it a shot.
- Bob
I very much like the results from L-Arginine but after about a week at 4grams (4000mg) per day it started hurting my stomach very soon after each dose taken after eating. I was taking capsules from GNC. I tried dumping them into water and stirring them up. This helped a little. When they were gone I started on my 1000mg bottle and was surprised that instead of capsules, they are tablets. I have been taking the GNC tablets now for a week and I have absolutely no problem from them.
I wonder if they dissolve more slowly rather than dissolving and dumping a dose of powder in a concentrated spot or what the difference is. Al I know is that the tablets cause me less problem. I generally have an iron gut.
Hawk said:
"I very much like the results from L-Arginine but after about a week at 4grams (4000mg) per day it started hurting my stomach very soon after each dose taken after eating. "
Hawk:
Some people have difficulty digesting proteins in general, and L-arginine is a building block (amino acid) of proteins. I find it quite interesting that it causes you problems. Here's why.
I have had some clients who need to take Ribonucleic Acid (RNA) with L-Arganine so they can utilize/synthesize it.
I just grabbed a book (Clinical Reference Guide); looked up RNA and it says this:
"Ribonucleic Acid is usually called RNA. It is a yeast extract. This is involved in cell multiplication and development. RNA helps build cells by supporting protein synthesis......It's also useful for promoting healing. For example, to assist in the nutritional removal of scar tissue, keyloids, etc. This is a product with many uses, all relating in one way or another to the formation of new tissues."
Hmmmmm...
Are you or anyone else on the forum aware of any theories that inability to properly synthesize protein could be a factor in Peyronies??
I'll do a bit more checking into this. I want to find out if RNA is provided by foods or created in the body. This could be a dead-end and go no where...or could be a helpful clue as to what's going on. I believe there is an MD on the forum....perhaps he could comment as well if this has merit investigating.
- Bob
Bob,
I do find that interesting but I have no other obvious indications of problems assimilating amino acids. I take 21 grams of whey protein a day with an amino acid profile that includes 500mg of L-Arginine. I eat other high protein foods like tuna, and salmon with no noticed negative effects.
Dear Forum members,
I was just told that one should take ornithine along with arginine, does anyone have any comments on this? Thank you.
Rico
Just checking in.. I am still on vacation and working on a slow modem dial-up connection, More importantly, I am still on vacation, and my mind is a bit slow!
RNA is a natural compnent of DNA replication. RNA is a messenger that takes the DNA code and makes the proteins. Although it is foundin yeast extracts, it is a large part of how we function (all mammalian systmes use RNA to synthesize proteins). I know of no reason tho think that oral RNA extract would do anything other than break down in the stomach and provide some elemental nutrients to us.
A naturopathic approach is welcome here, IMHO, Bob. However, just be aware that we have all dealt with MANY theoretical approaches that did not work out. Moreover, you may likely find here more clues than your "experts" will provide you. Here we have all scoured the literature to find anything that might help. An example might be the use of the Chinese Traditional Medicine skullcap which has wogonin in it, which has been shown to help Peyronies Disease in the laboratory cell culter experiments. So it goes here - we look for answers and we are open to much that is new. But we are all learning that if we are going to help ourselves, we must stretch out to new areas, but always to keep sight on WHAT WORKS.
So sure, I just bought another bottle of Emu Oil, and I take enough supplements to keep a small grocer alive and kicking finacially for a year. But we are mostly interested in finding either something that addresses the basic mechanisms, or that has been shown to work in a double blinded study.
Tim
As far as treatment goes...
I'm not looking as far as surgery...
but I'm taking the next 35 days and doing everything proper...
my diet is perfect (speaking of which, anyone looking for a world class diet i will send a copy of mine to them)... i weight train 3 times a week, and kickbox 3 times a week... I've spoken to the top trainers and have a perfect training regimen.
No booze... Nothing that constricts blood flow
I supplement with a decent multi-vitamin, and I take 400IU's of vitamin E twice daily...
But is there anything else anyone can recommend? I know this isnt the proper section for it, but the other ones are convoluted. Any other supplements? herbs? whatever's clever...
Any feedback would be greatly appreciated.
Roy Rogers,
I'm glad you are on this program. I one thing I think you should take is arginine, I would go to gnc or somewhere and buy a mix, with arginine in it. I use the one that a lot of the fighters on the UFC use, but if you go on the site on gnc and look under labels on the products you can pick and choose. You will see that some of the post on here, these guys have done some research also and have good suggestions on arginine, Like I said, I like the blend with all arginine and some that help promote the effect, much research has went into these mixes to promote healing, muscles are damaged when put through these workouts and they promote they to recover quick.
I'm 52 and started my martial arts as a wrestler in 1969, then while in the Navy over seas started kick boxing, now I mainly do jiu-jitsu and box, the thing I learn the most the hard way is not to over train, this throws you body into a stress situation.
I believe peyronies throws you into a stress state of mind, especially the first several months, It freaked me out. Sleep is one of the most important part of a workout, being well rested to recover. You should be sleeping a good ten hours aday if you are working out, one nap and eight hours.
The first thing they teach people who become very ill(cancer ect), is they need to think about self care, you have to take for yourself, sleep, take a nap, get some sun, nature is a huge factor in feeling whole again, go a park ect....When I first got this, I bang the heavy bag, stayed up late, couldn't sleep ect...wasn't eating right and now that I have been eating better, sleeping in, doing SELF CARE, not over training, just enough to keep the blow flow going and a diet mainly of fruits and veggies, all raw and good proteins, I feel so much better and my little guy looks better and erections are much stronger, I take epsom salt baths, boxers used them for years, you might not have access to a bath tub, I think you said you live in a dorm, but maybe the gym has a whirl pool. Xyience and Trac are two of the supplements I like, but you can like I said get arginine and some of the other supplements on these labels cheap other places. Take care...a young man like yourself, and a martial artist will be fine in my opinion because of your strong mind and will that the art brings to oneself....I will say a pray for you tonight...Keep Kicking:)..
Rico....remember...sleep!!!!!!!!
Quotebut I'm taking the next 35 days and doing everything proper
Roy,
I hope this includes getting a diagnosis. If you stubbed your toe or have a cold, OK, you don't really need a diagnosis. But, we are talking about your penis.
I don't mean to come down on you. I have just seen several younger men here who have not gone to the urologist. I can't imagine. This is one of the important body parts. Please, guys, get it checked out first. :) You'll have plenty of time to figure out treatment later.
Good Luck,
Liam
Bob,
Are you saying that one must have RNA with L Arginine to utilize it? I've never heard anyone promote this idea yet, how could one tell if they are not utilizing the L arginine?
ComeBackid
Rico found that l-ornithine is a precursor to l-arginine. After just a quick review of research I found l-ornithine to be a precursor of l-arginine. That alone is reason to take it. L-citrulline is also considered to be one of the best supplements to promote l-arginine production.
More investigation is needed as to the benefit that can be derived by men with Peyronies Disease. But, IMO, this is a good insight. WTG Rico
BTW, while you're soaking in the Epsom salt, try a little red wine. Very relaxing and a great antioxidant. I have herniated cervical disc and the muscles in my neck get so tense. This really helps.
I couldn't find an icon for that :).
Bob,
Wouldn't you need human RNA to affect human cellular activity? I also wondered how it can survive the digestive system.
I was just on line at gnc, Zig was asking about my supplement I take, the one I been taking is also if you are working out and does have some creatine in it. It gives you a good pump, blood flow, that is why they call it nox.
I went into gnc site and just started looking at labels, searching under arginine ect....nxcare vaso has all arginine, acl, ornithine, citrulline....arginine complex alone is 3000mg. a good dose...240 tablets in a bottle, they suggest 3 per day....if you get a gold card, which is free they will discount your purchase on the first tuesday of the month, I'm going there today.
That product looks like a buck a day if you were to double up.
I do believe one should cycle any of these products to get the best effect....30 days on take a week off.....40 days on then 10 days off.....and I always believe natural is best if you can....
I google foods with arginine ect.....Most of the foods I have been eating from the five best nuts and 12 fruits and veggies and lean meats and grains I know work, muesil is the best ceral one can eat, has silicea in it plus many more wound healing nutrients, this was developed by a Swiss nutritionist years ago, I just started it, a natural doctor suggested I take silicea, but instead of popping more pills I look up muesil and found it had this in it, now I start the day with a great breakfast. Remember brothers it isn't what you eat, it is what you assimilate, eat lots of fresh raw fruit and veggies with fiber and plenty of water for a week, so when you are taking supplements they get into your system. I buy the powder from because I do believe they get into my system better, but you will get delivery with the pills.
Liam thanks for the wine tip, I always have a good bottle of Merlot around. I will say that since my baths, now I don't know if it because I rest better, sleep is so important in healing, but my little guy looks much better when flaccid, it the beginning(first two-three months, now going into fourth), I was svireal up and dorsal vein was large on top, I have been taking baths now for two weeks, five per week, and eating 90% of time very healthy and it hangs better and looks healthy, no vein sticking out, almost back to what it look like before, when I shake it though after going to bathroom, it will still hinge to the side or something weird, and the slight curve and hour glass is still there with hinge when erect, but it hasn't progress at all, it was like my skin color and everything looks better down there. Could it be diet, epsom salt baths, I think it has help, Maybe I help stopped the inflammation, I know I'm buying more of them and I'm going to buy some more arginine mix, I just came off a week off for my cycle, so this time I'm going to go for 40days along with my diet and exercise program and hope to get my ved soon.....take care brothers, sorry for such a long note....I told someone on here that when I write these I'm not trying to preach, I'm talking to myself sometimes, I know what to do, it is always easier said than done...I brought my lunch today, apples, hard pears and two lemons squeezed into my water bottle, bag of nuts and salad with salmon, I'm going to go to the park by work and watch the girls walk by and feed the ducks, they have a water fall, nature is such a great healer, take care....
Rico
Quote from: Rico on August 01, 2006, 11:43:39 AM
I went into gnc site and just started looking at labels, searching under arginine ect....nxcare vaso has all arginine, acl, ornithine, citrulline....arginine complex alone is 3000mg. a good dose...240 tablets in a bottle, they suggest 3 per day....if you get a gold card, which is free they will discount your purchase on the first tuesday of the month, I'm going there today.
That product looks like a buck a day if you were to double up.
Rico, wow one pill that has all those treatments we've been talking about. Did you do a price comparison for to say if someone bought a bottle of those pills individually and compared that total price to the all in one nxcare vaso price? I wonder how much $ your acutally saving. I may check that out if I can get into a GNC store sometime soon.
ComeBackid
Nationwide, GNC's actually charges $15.00 for a Gold Card and they offer the 20% discount for the first 7 days of every month plus on the day you first buy the card.
My Opinion: I think the concept of stopping a suplement for a period of time then restarting it is an oldwives tale and that it has no documented benefit. No supplement, and few if any medications from a doctor, are ever prescribed like that. I don't think there is any logic in discontinuing a food substance they restarting it. If it works, it works. You body does not build up an immunity to a nutrient.
If anyone knows of any clinical studies or other documented evidence indicating I am wrong, please post and inform me.
Hawk,
I should of said the ones I'm taking(because they have creatine in them), sorry about that.
I guess when I signed on the gnc, they told me I could save x amount of dollars that day when I bought, they backed out the fee, It was along time ago. I'm not trying to promote gnc, I believe in reading the labels and looking for what you want, and then the delivery system(pills,powder ect), and choose what you prefer, I do know you should cycle creatine supplements.
Thanks Hawk, this is why I'm on this forum, some great experience and advise here, Getty said, "I would rather have 1% of 100 people vs 100% of my own time....
Rico
Rico,
I think your posts are all sincere. I may not have to explain this, but every now and then I think it is good if I do explain. My post was nothing more than one member's opinion and understanding. GNC is a highly rated store by Consumer Reports. I shop there among other places. My opinions don't represent an "Official PDS position" because we don't have one. The PDS supports the pursuit and dissemination of knowledge and ideas.
Like you, I just like to investigate claims, root out facts, and express my personal opinions as a member.
;)
Hawk,
I know you are a good guy:) and your post are meant to protect and serve on this forum, and your hard work is appreciated by all. You are a walking Angel
I did search for cycling on arginine, found one site www.primev.com/arginine.htm I have to learn how to cut and paste:) they suggested to cycle, two months on and off.
I know with creatine it is to give the kidneys a rest, you do retain water.
Arginine is produced in the liver, read meat, nuts and eggs have arginine, but because of our diet, most people are lacking and as we age, we don't function as well in the organ department sometimes. This is why we supplement. I think it is more of thought to give the large organs sometime off so to speak.
I know I'm not a medical person, I go with my gut and trial and error over the years of experience for what has worked for me with injuries ect....
More is not always better and can put a taxing factor on someones organs if there not careful, the liver is a amazing organ and can snap back in a short time from abuse. I know I can do amazing things in 30 days, then rest and start again, the more one can take in the nutrients and amino acids naturally the better for you, not only are you getting them, but you are getting the fiber and energy they supply.
As Shakespear said, "To Cycle or Not to Cycle, That is the Question"
Rico
QuoteYou are a walking Angle!
In the Peyronies Disease forum, this is hysterical.
P.S.
We all typo so don't take it personally. It was too good to pass up. :) Laughter is good medicine.
That is too good:). I haven't had a good laugh at my self in awhile, but it is even more funny considering the angle of us, sort to speak.
I have been reading more on supplements, amino acids, ones that work with each other, some that deplete others, they say, too much arginine can deplete lysine.....That is why I feel IMHO, that it is best to find a mix or blend that you feel comfortable with. Research on the amountto consume and how there interact is already worked out for you. I found two new ones at gnc Aminovol and xpand.....they have the whole gamit. I have never used either, but once again they are a blend with some research behind them.
Once again you can get most of what you need in foods, but when you supplement with products like these, they were designed for people who are working out and burning extra fuel. If you are sitting around not doing anything and eating steaks,nuts, fish, yogurt and other foods loaded in arginine ect....well I think you get my point...exercise and supplement with amino's to get the best over all effect of tissue repair...oxygen...circulation....ect... Hawk I should of called you a Saint anyway:)!
Rico
Rico,
You were highly accurate in your post. I thought you must have spoken to my wife because she will confirm that I am far more of a walking angle than I am a walking angel. ;D Take care
Rico,
I have to laugh at myself everyday. I do plenty to give myself a reason to. You are a great guy. I think I'll have an extra glass of Merlot in your honor ;).
I have the manager of the Health Hut looking for a blend of what I am taking now. That way I don't have to swallow so much. He thinks there are products out there. We are trying to make sure the dose of each ingredient will match closely to my doses now.
Liam
Liam,
I think you favs are l citrulline, arginine, alc I did find these in a blend Gaspari Nutrition SizeOn....No SizeOn is not a miss spelled word:)....it is for bodybuilders, it is on the gnc web site..
I will probally stick to the xyience blend, it does have creatine in it, which is not for everyone. It is nox so you get a good pump and I know even before I got peyronies when I took this, I got some real good wood, especially in the morning, would put it up against that Ginzo Knife anyday:)!
The one thing when you start taking these supplements, they were made for people who are in the gym working out, what ever your sport, it puts your mind set in the right place, like I said, just shoving them down your throat and sitting on the couch eating chips and drinking colas is not what they were intended for.
Veggie people(don't eat meat), do need more amino's also.
I do like like a powder, mix in water and down the hatch, gets into system fast. Trac at gnc has a good brand. The companies that have been around for awhile and have research behind there products is what I go with. I also think that if you are hitting three of the amino's that are for tissue repair, that is what you need, that is why some of them don't have everyone in there mix, they found a blend that works together. SizeON brothers:)...."The Sun Also Rises"
Rico
Well, I threw down some big bucks at GNC as a new Gold Card member. Thanks Rico. There went my new Commercial Weedeater I was going to buy! :D It's true as Hawk states, the first 7 days of the month, with a Gold card, you get 20% savings. I also hounded the guy to match any prices on their website homepage and any competitors prices. I must have saved $ 50.00 after doing this. I got the VASO(which does have the many ingredients I believe most of us agree on taking) along with Aloe Vera gel caps, Acetyl-l- Carnitine, CoQ10, Omega Complex(3,6,9) Fish oils, Bromelain, Gingko. It was kinda funny.The guy working there had a wealth of knowledge.He wanted to make me aware that I would be getting quite a bit of Bloodflow and oxygen, especially down to my Vital areas. I then told him of my condition and that was why I was purchasing these particular supplements. With his seemingly extensive knowledge, he totally agreed with this mix. Nice to know he was very supportive and I didn't feel embarrassed at all, until the good looking Blonde walked in. :o Then we started talking about pumping weights. ;D.. I also did some extensive research on the top rated Vitamin supplement brands. These keep coming up if anyones interested. Douglas Labs, Vitamin Research, Source Naturals, Freelife, Life extension, Ultimate Nutrition, Karuna, Nutrition Dynamics. I'm sure there are many quality products out there and am only offering this info to you from what I read. Zig -the -Twig
Zig,
I was at gnc today myself. I went with two cans of xyeince myself, they say it is good for two months, I will do it in 40 days they cycle off for two to three weeks.
I went to the store afterwards and loaded up on good protein and veggies and fruits, some nice steaks, chicken breast and fish. Lots of nuts and dried fruits also. I'm getting most of my nutrients from raw fresh fruits veggies and good protein from lean meats and fish and poultry, lots of good grains also, brown rice ect....I buy v8, and drink lots of filter water.
Not trying to get on the soap box, but The Best way to approach healing requires the assessment of the whole person, not just the wound in the person.
This wound went through three stages, the first phase only last three or four days, and I think because of the placement, we miss that part, so we do nothing about it, then the next 3 or 4 weeks, where the scar is actually forming, we are so freaked out, we don't sleep start taking a ton of crap, not know what to do, we all been there, and of course the doctor's typical wait and see approach....then the next phase which I see is where most of us are at...the maturation and remodeling stage.....I believe a large percent of this is done in the first 8 to 12 months....but takes several years to complete....it is remodeling and will continue, this is why I believe in ved...it can be remodeled....now of course everyone is different to some degree...ved and sport nutrition along with general total health, mind body and spirit....oh Liam, I picked up a bottle of Merlot and more epsom salts and a Neil Diamond and Jonny Lang tape to listen to in the tub, music will also heal the beast....when I get my ved I'm going to get the cd by the Stones...Pump It UP!!! Seems approperate!
Rico
Rico,
LOL I love it! :)
BTW, for protein, tuna is the perfect food. Tuna steaks are great. Canned tuna in water is low fat and high protein. Its all good. And all the cat will love you, too. Mine does.
Liam
Anyone remember Hot Tuna (rock group). ;)
Hey Guys,,thought i'd post as i got my Gastroenologist to prescribe for me some Trazadone today,,,he said it was a good idea and thought it would help my stomach problems and and give me the night time erections also,,he laughed and said we could kill 2 birds with one stone with this one...I told him about my peyronies condition and he was glad that I brought up the idea...I just took my first dose and so will let ya all know in a few days as to how it is working...
Just to let you know about the pain i have been going through with my stomach and intestines,,,I went through a lot more tests through the University and they still could not find anything,,so they and the doctors have concluded that i did have a parasite called Giardia and it's gone but left me with a lot of scar tissue and leasions in my stomach and small intestine and this could cause a lot of pain for who knows how long,,,I've been doing Tylenol and Benadryl to help keep the pain down but today he switched me over to Vistril for the bad pain and hope that works....I am having more good days than bad ones of which i am very thankful for...Anyways, i'm glad i have this forum to come to and read and i apprecieate all the work you men do to help others.....
Blessings to all of you,,,,,,,kimo
Kimo,
All you need for the nighttime erections is half of a 50mg pill of trazodone, take it like 15 minutes before you go to bed. YOu should notice the effects the first night, and the next day I know for me my penis was bigger and fuller with increased bloodflow. I didn't hear anything about trazodone helping stomach problems but I'd go with what your doctor suggests. Let us know how the trazodone effects your nightime erections, I'm also curious to see if you get the increased bloodflow like I did. The dosage is non habit forming which is great, the only side effect I've noticed so far is a slightly stuffy nose the next morning, certainly nothing to keep me from taking the drug.
Kimo,
Also take it with a snack. The only reason to do so is that it is better absorbed when taken with food.
Kimo,
If I was you I would start to drink liquid aloe, look it up. I think it would really help with the scar tissue in your stomach. Talk to your doctor about it, you can get it at gnc or walgreens buy the half gallon, get a good blend that isn't watered down. I use to have some stomach problems from eating lots of spicy foods ect...acid reflux ect...I started the aloe a couple of years ago, I don't have any acid reflux or stomach problems and I can eat as spicy as I want. A Nurse turn me on to it. I keep some in the frig. if I ever get heartburn or for friends, they are always surprise when I give them some to drink(you can buy fruit flavor) and there acid reflux goes away. Drink small amounts through out the day, it will also if you have a sore throat help take away the soreness.
Rico
What if I have a 45 degree bend in my penis when erect, no lumps, no swellings and no pain.
I can have a erection during the night {have to pee} or during the day when I get excited.
Been following this site now for a couple of years now and now wonder if I'm on the wrong track, maybe I should be looking for something along the line of carpal disease or "golfers grip" where the cord, cable shortens up to bend your fingers to about 45 degrees.
Or maybe I'm just off base, thats why I need your help to guide me along.
Went to the urologist he said you have Peyronies Disease, learn to live with it, so asked for a second opinion, this guy says, I want lots of pictures then we'll operate, just scared the hell out of me.
Went to " Illustrations of Penis Anatomy and Peyronies Disease" in this site and seen what might be my problem but again am I on the right track ?
I am 66 years of age and enjoy sex very much, that is up to 2 years ago and this bent penis thing just blew me away.
Any help would be greatly appreciated.
Barry2
Barry,
I'm 52, had no pain or swelling ect...I have a slight curve up and lost of size with a hinge effect(hour glass). You did the right thing and went to the doctor.
I would look on the site and read on the ved and see if this is something that might help you. I will be starting this soon myself, I have only had it for three months now.
Read on the supplements also, find a program that you believe in. You don't have to have a bump or pain to have peyronies, this kept me in denial for the first two months myself.
You have come to the right place to discuss your condition and try to find what works for you. There is NO quick fix, the ones who have luck with the VED take it slow, it is remolding the scar tissue.
I have PM(personal message), several gentlemen on here and there were very kind and shared there knowledge with me on there development and is does give one hope. Take care and welcome...God Bless.
Rico
Hey Guys,
Just want to first say, I am extremely grateful for all the PM's I've been getting. Very encouraging. Special shouts to ComeBackid-great guy! A quick question: Anyone been on pentox? Any personal positive progress reports? I read a report dating Feb 2006 showing pentox to have positive effect against peyronie's plaque etc.
Kind Regards,
Power
Aloha guys for all the advise, it's much apprecieated..Rico, I have tried the aloe juice and didn't get any relief with it, i still have a lot of it in the fridg.....I am begining to have more good days than bad..I do take a Pro-Biotic tablet 3 times a day and a vita-C twice a day along now with the Trazadone and if my pain comes up and gets bad the doc gave me some Vistril to take and help calm it down,,but so far i haven't needed it...
Thanks again for all the suggestions.....ComeBackid,,my first dose of trazadone didn't bring anything up last night, ha! I was a little disapointed, but hey i just got started..,,,,,,,,Malamapono,,,,,,Kimo
One of the best sources of getting your supply of natural Arginine is nuts, raisins, and chocolate....good old trial mix:)... But on another note... arginine ethyl ester which is man made aginine and is different than l-arginine is found to be more effective as far as supplying oxygen flow to the body, this is because it is absorb better. It makes more sense to me to buy a mix at the nutrition store, you can get one with all the vitamins in it and even some protein, this could be your breakfast drink and you would be done for the day, no pill popping. Then by having a little trail mix, and good diet you are on your way, make life easier.
Of course one has to address his individual needs also, high blood pressure, prostate health ect....I take fish oil and cq10 and a liquid vitamin. When I'm done with the mix I just picked up from GNC, I will cycle off for ten days and then try a different brand, I find it interesting how some will have lysine in it and others won't. Lysine is good for tissue repair, but suppose to suppress the effects of arginine, but once again these are a chain, and the different combos have been researched.
The brand I'm using now really give you the nox(oxygen), I had cycle off for ten days and now on day two and this morning I woke up with a Italian Pup Tent! Now I think my good diet and I have been getting to bed early and getting a lot of rest also helped, but I no the nox gives wood:)....Take care all and I hope this note found everyone in good health and spirits....God Bless....The Sun Also Rises!!!!!
Rico
Finally got my GP to prescribe Pentox 400 mg three times a day. I wowed him with my knowledge of the subject (thanks to the forum). I will bring him copies of the abstracts on my next visit. Thats the good news.
Bad news is high cholesterol. He gave me 10 mg Crestor and told me not to eat anything that taste good :). High cholesterol is another risk factor for Peyronies Disease.
Liam
Liam,
I am interested in the cost for Pentox. Obviously it depends on your insurance but you should have some sense of its cost relative to other prescriptions you have gotten.
PS: If possible, get your cholesterol down naturally. Lots of omega 3 from fish or Flax seed (for men - not straight Flax oil). Whole grains, oatmeal, 5-8 servings fruits and veggies, limit red meat and saturated ans trans fat.
Hey Liam, just a note of experience on how i got my cholesterol down..I stopped eating peanuts and or peanut butter, it way down..And then in the past few months because of this parasite problem i had given up all dairy products and it dropped way down even more...I'm still a little to high but it runs in my family, i do eat a healthy diet, lots of nuts and seeds, fresh fruit and fish , chicken , veggies....I eat very little red meat, but do have it about 1 or 2 times a week for the protien....I stopped drinking soda pop,,only water and coffee and maybe some iced tea....Hope this helps a little..........kimo
I'm drinking Green tea and taking Red yeast rice :) I also stopped sugar. I use the yellow stuff now (Splenda). I used to drink several Cokes per day.
I live on the gulf and we have great seafood. So thats good. Everyone here loves Lent :). I ate boiled shrimp and a salad with raw veggies tonight. I stocked up on oatmeal.
Thanks for all the good advice.
Liam
My Doctor only gave me one a day not 3, for three months then we're checking again. After all the reading I've done the past week [I'm a little obsessive about research into anything and this has been my most obsessive yet!] I'm trying to see if I should call and ask about upping the dosage...
I was a little to the left forever and when about a year ago I started leaning further - it got much worse in the past couple months - my wife said everything was fine I was just growing older/changing, etc. Turns out I was not. A little shocking at 32! I've been focused on eating better and getting into better shape for the past two years [again with the obsessiveness heheh] and I just keep hoping it will heal, or at the least not get any worse. I'd hate to get myself looking as good as I have getting into shape, lifting weights, etc. only to not be able to do anything about the attention I'm getting ::)
Second day of pentox and handling it well. I do notice a difference, more full when flacid. I'm feeling hopeful
Rico,
You know I'm from Bubba Gump territory. Gotta have the shrimp. I checked them out and I think in moderation, balanced with the rest of my diet ( I am trying to stay with fish and seafood), it is OK. But, while you are right, check this page for other benefits of shrimp.
http://www.whfoods.com/genpage.php?tname=foodspice&dbid=107
I gave up sugar while body building. I would use fructose in moderation. I'm familiar and enjoy the unrefined sugar, too. About the only thing I use sugar in is coffee (decaf).
Hey Guys,,just wanted to know if anyone else has experienced the same effects as i have,,,,so far after 3 nights of taking Trazadone i can only say for sure i have had 1 night time erection, but what is bothering me is 25mg knocks me out like a light just like 50mg of Benadryl would.....And i wake up groggy and my neck and shoulders are all tensed up and that kinda makes me feel tired,,it goes away after being up for about an hour....And it knocks me out so well that when i wake up my bladder really hurts and i have to run and relieve myself......Has anyone else had any of these things to deal with? I think i'm gonna lay off of it tonight and see how i feel in the morning.......Thanks for your reply's......Malamapono..........kimo
Kimo,
I've noticed when I wake up I have a stuffy nose, and some slight join pain. I do feel groggy to, and the trazodone puts me to sleep at night. You may not notice all the erections your having especially when your in REM sleep. Have you noticed your penis is bigger when flaccid the next day when you wake up after you take the pill?
ComeBackid
Subject line on this post edited for easy reference
ComeBackid,,,,I only noticed once the second morning , i knew that i had--had an erection and my penis was fuller,,but only once so far.....I will start again tomorrow night,,,,,thanks again,,,,,kimo
Subject line on this post edited for easy reference
I have been taking 25mg of trazadone for 4 days now, and I too have been feeling groggy when waking up. I do believe that when taken over a period of time, your body will adjust to the medication, and you should be able to wake up O.K. I'm willing to put up with the minor side affects for now. I needed to sleep, so I don't mind. Until your body adjusts, maybe getting up earlier, will help with the morning blahs. Keep the Faith, Blink
Blink,
You are right, after awhile your body will adjust, I was on lexapro for about a year and after awhile my body got used to the side effects, that to made me sleepy and groggy.
I've noticed that my penis has regained lost size, and it isn't so hard anymore, has to do with the bloodflow thing, I'm really impressed with this medication.
ComeBackid
Subject line on this post edited for easy reference
Hey Guys,
Not sure if this information concerning the production of AA4500 was posted previously. But here goes. Its dated July 17, 2006"
http://www.bioportfolio.com/biotech_news/Cobra_Biomanufacturing_9.htm
Power
"Cobra Biomanufacturing and Auxilium Pharmaceuticals will be discussing the terms of a non-exclusive long-term manufacturing agreement for the commercial supply requirements of AA4500."
Power,
Haven't seen that news article at all yet, thanks for posting it. Auxillium must have some faith in their product if they are going to enter into a long term contract for production. I'd say this is only a good sign for us sufferers, hopefully Auxillium will get their next trials started in September, only a month to go for that.
ComeBackid
Yeah ComeBackid, maybe we'll be carpooling for that block of testing! Blink
I thought I'd share a little something that I learned Tuesday, July 11th. About two weeks ago I got a phone number from Auxilium's web site. I called that number, and explained to the person who answered that I wanted to find out if Auxililum would be doing more clinical testing. I was transferred to another extension. Naturally, when I got an answering machine, I figured I was getting blown off. On Tuesday I received a phone call from a guy named Gary Nevin, who works for Auxilium. He told me that testing on AA4500 would resume in a couple of months nationwide. He asked if I was still interested in participating in the study. I said yes. He then told me that he would put my name on a list of others who had called him. He only wanted to know my name, phone number, and town that I live in. He told me that there where no guarantees I would be chosen for the testing, but that he would be able to give me "a heads up" on the start date, and location nearest to me, that would be testing. I do know that the testing will be done on patients who have Peyronies and/or Dupuytrens. I can't guarantee that anyone else who calls will get the same response, but I felt that I needed to share this info with all of you. This is Gary's office number: 1-732-223-7321. I did not get any approval from Gary to give out this number, nor did I tell him I was connected to this forum. When I talked to him, he told me that he could not take too much information from me, because he could not appear to be biased towards me in any way. I hope that some of us will try to help with this testing. Hopefully we can help to find that "silver bullet" that we are all looking for. If we don't find it, at least we tried. Keep the faith, brothers and sisters....Blink
[/quote]
Quote from: learn4life on December 05, 2005, 11:06:04 PM
Ok. This is taking from a book I have bought from here :
http://www.amazon.com/gp/product/159800168X/qid=1133840369/sr=8-1/ref=sr_8_xs_ap_i1_xgl14/104-3896453-5763901?n=507846&s=books&v=glance
I have taking bits out of it and not every word.
The Secret for a Perfectly Straight and Massive Penis-Prostaglandin E-1 (PGE-1)
Have you seen in your local Drug Store supplements called "Evening Primose Oil" or "Borage(Starflower Oil)
The effect on skin Elasticity is also Great.All these effects are due to gamma - linolenic acid(gla).it is essential for the
production of Pro E1 in the body, which regulates several functions.Its n1 benefit for the man is an increase in the
elasticity and stretching abilities of all nerves and blood vessels in your penile tissues.
Its role is to continuously increase the elasticity of the penile tissue and suppress the release of hardening colagen.
Your body will convert it into pro E1 which will help to preserve the elasticity and youthful condition of your entire skin for a long time.
You can apply on your penis gla rich oil during regular vip genital massages. this will supress the release of hardening colagen.
Second source: http://www.actionlove.com/cases/case13917.htm
Has anyone tried to increase their Prostaglandin E1 by taking starflower oil or any other supplements?
ComeBackid
I am not sure what "regular VIP genital massage" is, but it sure sounds fun!
Hell - why not try it? My main issue is to find a time when my penis is not swathed in DMSO/Thacker's formula-laden bandages, slathered in DMSO or Emu Oil, encased in a plastic penis enlarging device, being stretched out on a mini-rack, duct-taped to magnets, or getting electocuted with verapamil. As it is, I have to schedule a time to pee - and forget about sex...
Tim (calling for the VIP treament ASAP...)
Wow,
Tim your really attacking this thing full force man. I didn't know you were on the thackers on top of the Iono treatments and the VED. Have you noticied any results at all from the thackers or dmso raps or anything? I know for me the Iono treatments and the VED, along with the ALC and L Arginine pill routine take up enough time in my day, don't know how I could fit a two hour thacker wrap in.
ComeBackid
Um, ComeBackid, that was a slight exageration... otherwise known as a joke - you know, those are the things we say now and then to laugh? :D
Tim
I got some dmso here, just a little concerned after the first soak my penis might fall off ;D
Just be careful of those magnets......Ask Hawk, he has a sad story to tell!! News at 11 ;D
I wanna go where you went. You have come back sharp. Glad you're back
AAARRRGG! I just paid over $150 for my Urologist to tell me, "the latest studies show that 400IU of vitamin E taken 3 times a day for 1 year resolves 86% of all Peyronie's cases, and is the most effective treatment available at this time."
My Peyronie's onset about 4 months ago and is still mildly painful (though the pain is much less since I've started taking L-arginine and acetyl-l-carnitine a couple weeks ago) and am at about 10-15 degree curve. I've been lurking on this board for a while, gathering what info I could and decided the best treatment for me at this early stage in the disease would be Pentox.
I brought in all the research there is on Pentox, I brought in Tom Lue's contact info (address, phone, fax). But my Uro's line (and he repeated it several times) was, "I know nothing about this treament, and I'm sure not going to be the first to try it out on you."
He did agree that Potaba, Verapimil, etc have been found to be ineffective, but boy did he stand confident about his Vitamin E treatment.
My discouragement comes from knowing that Pentox is most effective during the Active phase of peyronie's, which means time is critical for me to find a doc to prescribe it. Would Tom Lue prescribe it over the phone if I faxed my Uro's records to him, do you think? Otherwise, my only other option seems to be to randomly visit Uro's until I find one willing to prescribe it.
Suggestions? Do any of you know a doc in the Raleigh/Durham NC area that will prescribe Pentox?
Myrddin,
Welcome aboard! We are glad you registered and posted. I am very interested at to exactly what studies your urologist is referencing in regard to vitamin E. Tell him you and others at a support group are very interested in reviewing this study.
I cannot answer your other questions, but some have gotten their Family doctor to prescribe Pentox., Hopefully someone else has more information.
Hi Myrddin,
It seems again and again that folks visit to their urologist comes back with this kind of story in flat out inadequate care. I understand his not wanting to experiment on you - that is a good thing. But I learned a long time ago that when I am asked a question that I don't know the answer, it is always safe to say "I don't know", or "I've never read *that*" See - that is a safe and true statement - but it dodges the matter of whether there might be data - and I just have not seen it.
We joke around that when we are asked a question where we don't know the answer, it is always good to have a ready reply. My favorite is "Don't get me started on *that* topic - I'll never shut up!". My partners is to say: "That is a great question, but an even better question would be to ask..."
We joke about it, but one advantage of being in an academic center is that the peer standard is that when we don't know something we look it up. But God I hate reading such stories. I still feel bad about encouraging ComeBackid to GO TO A DOCTOR, only to have his questions ignored, and for him to simply not know anything about Peyronies Disease, nor to gather any data (ComeBackid had issues that suggested impaired blood flow all the time - concerning to me; apparently not of interest to the urologist he saw). It is really frustrating.
It is extremely difficult for patients to speak to such physicians - or to ask "What are the latest studies to which you refer?" It is hard for ME to speak to doctors as a patient about this stuff - when my Dad was dying, I had to literally trap one physician in her office to make her listen to what I thought about treating my Dad's lung disease - and she was reluctant to do it. And I am a pulmonologist who had done original research in the area of lung disease that he had!!
::heavy sigh:: remembering that moment...
My brother said to me at that time, "You don't have to worry about their feelings except to the degree that failing to do so will directly lead to harm to Dad". So I got pushy.
In your situation, you might try this: write the doctor a letter. Make it brief. State that you are very grateful for his time and help. Tell him that you are taking the vitamin E (or that you have (more likely) already been taking it for several months, but that you wanted to forward to him more about the role of Pentox and PGE2 inhibitors in treating early Peyronies Disease. Then say that you are very interested in trying to do all that you can at this stage when most of the studies say your chances of success are greatest. Give him refernces, or better yet, include an appended list of abstracts that are relveant.
Tim
Hi Myrddin, I got the same stuff from my uro. At least yours didn't prescribe to you uselees topical verapimil@ $1200.00 for a six month supply. I went to see him equipped with two completed studies on treatments that looked promising, after his eyes uncrossed, he prescribed me the expensive useless stuff! My soon to be ex-wife even gave me crap about spending money on "somebody else's junk" (one of my motorcycles) rather than spending it to correct my problem. I told her the bike was worth a whole lot more than the treatments, and besides, the bike made me feel happy. I did talk to my family physician, who has prescribed some stuff for me. He knows what's going on. Instead of lying or blowing me off, at least he gives some of my suggestions thought, instead of readily dismissing them. Tim's suggestion is worth a try, also consider talking to your family doc. The visit is much cheaper if he won't listen! Keep the Faith...Blink
Thank you for the wise advice. And the sympathy. I will definitely keep this in mind on my next doc visit. I've already seen my family doc, who referred me to this Uro.
I'm also calmed down enough to describe what good there was in my visit.
He DID ask if he could keep the 3 published reports I brought in that supported Pentox treatment (I'd found links to them in the "Developmental treatments" thread here). I doubt he'll have a change of heart, but maybe it'll help keep those options open for the next Peyronie's patient he sees. Let the proliferation of knowledge commence!
He also recommended I go see the Uro who is the Peyronie's "expert" in my local area, who had taught a course on it recently to the local urologists. I was fortunate enough to walk away with the "expert"s phone number, so I'll make an appointment and give this one more try. If the new doc tells me the same thing about Vitamin E having such dramatic results, I will be asking for specific studies, and if any of HIS OWN patients have seen the same results.
I'd been taking 400IU vitamin E, twice a day, for about a month and a half. But the specifics he gave me, for anyone still holding hope for Vitamin E, was this: Don't take the 3 vitamin E gels at once, take 1 in the morning, 1 at lunchtime, and one before bed, for a daily total of 1200 IU. That way you maintain a constant level in your body throughout the day. So meanwhile, what the heck, I'll give that a try. Along with the arginine and carnitine I've had for a couple weeks, which seem to have a better record of results, and have helped my pain significantly in just a couple weeks.
I'm 36, married. I'm fortunate to have a very supportive wife. Today is our 10th anniversary, and yesterday I was commenting sarcastically, "woohoo! It's our 10th anniversary. Let's have a romantic candlelit dinner followed by painful, awkward sex!"
to which she replied, "you know, you shouldn't let it worry you so much. That is not the most important thing at all!"
Your wife sounds really great - and I feel your pain (actually, I feel my own pain, which is pretty similar!).
FWIW, you mentioned some very good things. The referral to the "expert" is a very good thing - go quickly.
Here are the references I would use for the urologist. It is interesting that several of the older studies of other fibrosing illnesses usd a combination of Pentox and vitamin E together (probably because vitamin E was the "gold standard" at the time, and they figured they couldn't leave it out of the protocol).
I just ran an Ovid search on Penile Induration/Peyronie Disease AND vitamin E. The literature for the last 30 years had 64 articles referenced through Ovid. Recent articles that actually studied vitamin E are all referencing the use of it only in combination with other agents ("interferon-alpha 2b combined with oral vitamin E...", "Extracorporeal shockwave therapy (ESWT) and high dose vitamin E...", "vitamin E and colchicine ...", "radiotherapy and vitamin E...").
There are NO new (I am defining "new" as in the past ten years) studies of vitamin E in the medical literature, and going back to 1966 with Ovid, there are no GOOD studies of vitamin E done - ever! There are a collection of anecdotal studies, and it gathered preference as non-harmful, and associated with a greater than placebo improvement rate in a few studies in the 60's, but those were NOT confirmed in other studies. A review right now of "Cochrane's Review" for any evidence based reason to use vitamin E did not help - I ran "Peyronie Disease", and "Peyronie's Disease", and "Penis" and found nothing of help.
So, the claims that vitamin E are the standard of care, based on the latest studies is someone blowing smoke out his ass (to use a medical term...). Go to the new doctor and challenge him to provide more up-to-date help.
Tim
References:
Brant WO. Dean RC. Lue TF. (2006) Treatment of Peyronie's disease with oral pentoxifylline. Nature Clinical Practice Urology. 3(2):111-5, 2006 Feb.
Valente EG et al. (2003) L-arginine and phosphodiesterase (PDE) inhibitors counteract
fibrosis in the Peyronie's fibrotic plaque and related fibroblast cultures. Nitric Oxide 9: 229–244
Chiao TB and Lee AJ (2005) Role of pentoxifylline and vitamin E in attenuation of radiation-induced fibrosis. Ann Pharmacother 39: 516–522
Delanian S et al. (2005) Kinetics of response to long-term treatment combining pentoxifylline and tocopherol in patients with superficial radiationinduced fibrosis. J Clin Oncol 22: 1–10
Haddad P et al. (2005) Pentoxifylline and vitamin E combination for superficial radiation-induced fibrosis: a phase II clinical trial. Radiother Oncol 77: 324–326
Tim,
That was some awesome reasearch you did for me there. Thanks! I'll definitely use those references when visiting Uro #2.
And you definitely confirmed what I suspected regarding Vitamin E research. I guess doctors can also be guilty of just believing anything they hear, not checking their info for validity.
Well it seems like it might be a good time to throw out a new supplement for everybody to 'chew on'. So ... lets see ... how about ... HORNY GOAT WEED!!!
From Wikipedia:
QuoteHorny Goat Weed works by increasing nitric oxide levels, which relax smooth muscle. This lets more blood flow to the penis or clitoris or other smooth muscle.
In addition to this mechanism, it also acts as a mild PDE-5 inhibitor. PDE-5 is an enzyme which is produced in a 'negative feedback" loop. As more blood flows to the genitals starts to flow, PDE-5 metabolizes the nitric oxide almost as fast as it is being produced to keep it in check. If the body does not produce enough of this enzyme, damage to the erect penis could result from too hard of an erection. This is called priapism. Viagra, a popular pharmaceutical, works by blocking the production of the PDE-5 enzyme. Horny Goat Weed produces small amount of PDE-5 inhibitors within safe levels.
http://en.wikipedia.org/wiki/Epimedium (http://en.wikipedia.org/wiki/Epimedium)
How about combining THAT with Vitamin E and L-Arginine?
Cheers,
George
I don't know enough about horny goat weed to comment - I have heard that it's effects are "unproven and unreliable" (vis actual dose, and variability in quality). But the mechanism of action is pretty straightforward - so it makes sense to me.
In my post to myrddin I said:
>>Here are the references I would use for the urologist. It is interesting that several of the older studies of other fibrosing illnesses usd a combination of Pentox and vitamin E together (probably because vitamin E was the "gold standard" at the time, and they figured they couldn't leave it out of the protocol).<<
I meant to say in several of the NEWER studies that use vitamin E. In those studies the study material/drug is added to the vitamin E - I guess the presumption is that it is the gold standard.
::sigh:: some gold standard...
Tim
Tim,
Do you think aspirin or ibuprofen will help with Peyronies Disease ? What about topical aspirin, such as aspercream or something similar?
Phil
I have my personal experience. When I was drinking coffee, I made a direct correlation between coffee intake and progression of the lesion. That is, I can always FEEL when it is active and getting worse. I have a dull ache in the penis and I get "up tight and outta sight". I think the general adrenergic stimulus of coffee is not good for Peyronies Disease (nor for erections). So I stopped. But the main reason I stopped was because of the constant headaches I had.
When I stopped caffeine, my headaches got much better, and I went from very regular use of advil to infrequent use. And, lo and behold, my Peyronies Disease got worse. So, was it the coffeine, or was it the advil that was responsible for the changes? I started to use advil on a regular basis again, but not as often as before. It seems to make it feel better (less achy feeling and up tight thing going on)...
So I am unsure.
One other note. I scoured the web again about trazadone. It was a fairly popular drug for ED until the release of Viagra. It is a testament to the success of viagra that ED was so marginalized, and is now so out in the open. But the mechanism for trazadone is theough alpha adrenergic blockade. Adrenal release of epinephrine and nor-epinephrine lead to a variety of effects. Alphas activity allows the sinusoids to drain and let the blood out of the penis; blockade of that leads to a longer period of erection during nocturnal erections.
So, it seems that the mechanism for stress leading to a shriveled feeling in the penis, is through the alpha adrenergic mediated promotion of drainage of blood out. Trazadone blocks that. This may explain why ComeBackid reports feeling "fuller" during the day. It also suggests that one thing we should do is to meditate and relax to reduce our release of norepi, so that we do not need as many meds.
I noted an article that compared red ginseng to trazadone and it works better than trazadone for this delayed drainage of blood - suggesting that it works through the same mechanism. I tried some tonight and tolerated it well - I will report back soon enough (Modified page: woke feeling quite full!)
Finally, if someone has pretty long-lasting erections (ie not much of a problem with erectile fuction, or already enjoys longlasting erections), then he should NOT USE TRAZADONE, because 50% of those who report the side effect of priapism had that history. And priapism can lead to penile fibrosis and permanent impotence. So be careful!
Tim
According to this article, there may be some benefit to "Aspercreme". Check other sources of course.
http://www.sportsinjurybulletin.com/archive/0283.htm
I have read that aspercream doesn't go through the skin, if your pain is deep. The new delivery system "liposmoes", which Alcis uses suppose to go through the fatty layers and give one deep penatration. I haven't used it. There is ketaproten also, but I think you need a prescription for it, they make a topical compound also. Lidocaine is being used by some sport doctors. I did see a over the counter msm that had the liposomes delivery system also. None of these will reduce scar tissue, but if you want to stop pain at the source. Ketaprofen can be taken oral also. There is also suppose to be a new over the counter nasid being approved by the fda soon, topical with the liposomes delivery system this year. Once again, this is not for scar repair, but inflammation around the injury.
There are many nerves on the top of the penis shaft, I believe some of us(myself no pain), have pain because our plaque is pinching a nerve, the shrinking or the stopping of the inflammation which causes the plaque to stablize and not put pressue on the nerve endings, is what stops the pain.
God Bless everyone on this Bless Day.....
Rico I'm trying to use spell check and it isn't working..so forgive my poor english:)
Read the linked article, Rico, it might change your mind. It appears that in animal experiments (most people are not willing to allow doctors to take extensive tissue biopsies after an experiment!), that tissue levels were pretty high. The experiment with weightlifting was fascinating. Pretty cool thought - no data regarding Peyronies Disease though.
I would try it in a heart beat for pain related to Peyronies Disease.
Tim
Tim
Yes this is a good article. I was on a sports injury forum and they said they had better luck with deeper pain with the other products, once again this I haven't tried. I always have taken a large amount of nasid for pain and it works for me. I don't like to take anything for long periods, and choose to "Bam" it, with a large dose, maybe 6 advil at once, a couple of times a day for two or three days, it works for me. I only use it for serve cases of deep pain.
Can you google Ultra Prime, it is a hgh, amino blend. I had taken it several years ago, I did have some retracing from a old injury, they said this is because it comes back and repairs the old scar tissue. I had got it through a distributor(mlm), It has many of the amino we take, but I would like your professional opinion on this. My first thought was to take this product, but my ex is involved with the company and when I told her what I wanted it for, this is when she found out I had this peyronies and didn't want to talk to me anymore:(. This retracing is interesting to me though, and I keep comparing back to this product and would like your opionion on it. It is expensive, about $8o. a month, but I don't know if it would be redunant with what we are taking, and if it is the arginine in it that is helping. They have a label list on the product and Like I said I would be interested in your thoughts. It took about six weeks when I was on it, and a old shoulder injury came back bad, but I stayed on it and it went away and now is very strong. I haven't taken it now for almost a year.
Retracing is very interesting to me, along with hgh and collagen rebuilding. I believe we are like a onion with many layers, and if we peel them back one at a time we can get to the root of the problem....Dr. Goldman and Dr. Klatz where behind the research and had a best seller on anti aging....Goldman is more of sports medicine and was on the Olympic board and holds many athletic records himself. Klatz uses his pets to experiment on and keeps them alive way past their years...I like I said don't know enough about the aminos and how they interact, but I keep coming back to that shoulder injury and how it retrace my injury....please give me your thoughts on this....Thank you.
Rico
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I do worry that you take risks, Rico. Taking a larger than recommended dose of Advil (max recommended dose is no mor than 4 at a time) can lead to irreversible kidney failure. We lost a All-Pro safety in Seattle to that - the Seahawks then kept a large salad bowl of advil available for atheltes to simply gulp as they felt they needed. Now, a successful lawsuit later, they no longer do that. Kenny Easley won his suit, but he never played again, and ultimately needed a kidney transplant.
More is not always better or safe.
Tim
"Subject line on this post edited for easy reference"
Tim
Yes, I would agree that four would be best. It was a doctor who suggested the large dose to me years ago. Like I said, I stay away from medicine and use only if the pain is really bad, like I can't sleep because of it pain, which is rare. Getting kicked in the head and body slammed probally wasn't the best thing for me also. But they all seem mild to me vs a broken heart:), now that is pain!
I'm going to soak my dick in a few minutes in dmso and avc and castor oil, I don't think anyone else should do it, except if they choose and know the risks. I'm don't' think much about dying, it is living I'm talking about. You choose the verapamil, and the other drug, does anyone really know what that can do to someone long term? If I had the machine here, I would hook it up in a second. I'm 52, lived a good life, I have nothing now, no money, no wife, and a bent dick, I'm all alone in a new city with no support other than my new friends here. This is the bottom, risk, it can't get any worse brother....I do thank you for your concern and I will watch my post, I don't want anyone to follow my lead just because I put a post on, my research is limited and I'm a trail and error guy and now I'm going to put together my thacker formula and pickle my pecker....Tim thank you for being here on the forum, you experience and knowledge is most welcome, and you are right, I can be a loose cannon sometimes....just take me with a pinch of salt...I have made Peace with the big guy upstairs, and when they are going to pull my ticket, well it is going to happen anyway....Like I said, it isn't dying I'm worried about, It is living...
God Bless.....
Rico
Hi all. First post to the forums here. I've spent hours reading all of the posts and thank all of you who've contributed. This resource is a goldmine for those of us who've developed this wonderful thing called Peyronies. :)
I was diagnosed a week and a half ago and put on a regimen of L-Arginine, Viagra (25mg) and Pentox. I've done a bunch of research and have some additional questions:
1. It seems to me that the main purpose of viagra is to get the rock-solid erections that get the blood back flowing into the damaged area. The problem for me is that I'm paying out of pocked for viagra and it ain't cheap. I'm thinking of making an appt with a GP in the hopes of getting a Trazodone scrip. Do you guys agree that trazodone would be a good substitute for viagra? Also, any tips in trying to get a trazodone scrip (I'll go back through the forums and look for medical references that back up the use of trazodone for producing erections).
2. In addition to the above meds I'm also taking Acetyl-L-Carnitine (650 mg 3x/day) and Vitamin E (400 IU 2x/day). I've been reading more about the benefits fo Acetylcholine and my understanding is that in order to produce Acetyl Choline you would need ALC + Choline. Is this correct? If so, then I am likely going to add a Choline supplement to the mix.
3. Any recommendations for a good multi-vitamin? I haven't taken a multi in a while because I assumed I was getting most of my vitamins and minerals through food (I tend to eat 10+ servings of fruits and veggies each day plus lots of whole grains, soy protein, etc.). But I do think it's time to start a multi so I'd be curious to hear what y'all recommend.
4. My dosage for L-Arginine is 1000 mg 1x/day. That was what was recommended by the doc. I'm wondering though what the benefits/drawbacks of upping that dosage might be. I've seen people on here who are doing 4000-5000 mg/day and so I thought I'd ask.
5. I'm actually pretty surprised that more people on these forums aren't talking about diet. It would seem to me that this probably plays a pretty big role in Peyronies treatment. I eat a pretty healthy diet (as outlined above) but am always looking to improve. One thing I'm a bit concerned about is that my diet is mostly vegan (I eat almost no dairy and meat only a few times a week). Most of what I've read supports this from a health perspective but I am concerned that I might not be getting enough amino acids on this diet which could stunt recovery. Any thoughts on this? Also, any foods that people think are particularly helpful in recovery.
(By the way, it also seems to me that exercise probably plays a pretty big role in all this given that it gets blood flowing through the body including our members. Again, it's something that I don't see talked about much here. It would be nice to know if there was a strong correlation between a healthy diet and regular exercise and recovery. It would seem likely that there would be...)
OK, I'll shut up for now as I've said a lot. Thanks in advance for any help. I'm looking forward to being a regular contributor here.
"Subject line on this post edited for easy reference"
Danny, Welcome! I'm sure you'd rather be anywhere else, but you will find a bunch of wonderful, knowledgeable, helpful men here! I will forward you a study via PM dealing with Trazodone. My DH faxed it to his Dr. and a script was called into the pharmacy. It is used for night time erections. I have no working knowledge about viagra, diets or most of what you mentioned, but I am sure your questions will be answered by those who are in the know.
Danny, by all means please do not shut up! You have a lot of great things to say. On the trazedone issue. In my opinion, Trazedone is better than viagra because it does not cause your blood pressure to rise and anything that causes you to see blue can't be good. In my opinion, trazedone is safer. When I asked my GP to give me trazedone, I told him that I needed it for mild depression, to help with sleep, and as an aid for peyronies treatment. I also asked that he prescribe me 50mg once daily. I cut the pills in half, giving me enough for two months supply. A script of trazedone only costs about four bucks, compaired to the price of one viagra tablet. (I'm not sure what they cost) The trazedone does make you a bit groggy in the morning until your body adjusts. Give yourself a little extra time to wake up in the morning. As for the vitamins, I'm taking the generic version of Centrum Silver. It's cheap at Walmart. I believe that any herb or supplement that promotes blood flow and cellular regeneration would be good to take. Also antioxidants are good to flush the system out. I really don't take massive amounts of anything. I just try to be consistant with my regimen. Keeping fit is always a good thing, both mentally and physically. And don't forget Rico's epsom salts baths! Soaking in a nice hot bath with epsom salts is very relaxing and helps to sleep well and reduce stress. Keep the Faith...Blink
"Subject line on this post edited for easy reference"
BLBC, would you send me a copy of that study too! Thanks. Keep the Faith...Blink
DannyOcean,
Welcome! Glad you found us here. That was a great first post. Keep posting, please!
Trazadone and Viagra, although both legitimate treatments, work by different mechanisms. Viagra (sildenafil), Pentoxifylline, and l-arginine purportedly have a synergistic effect causing the total effect of taking all three to be greater than the sum of its parts.
Trazadone Quote...But the mechanism for trazadone is theough alpha adrenergic blockade. Adrenal release of epinephrine and nor-epinephrine lead to a variety of effects. Alphas activity allows the sinusoids to drain and let the blood out of the penis; blockade of that leads to a longer period of erection during nocturnal erections. Thanks Tim
How Viagra Works QuoteUnfortunately, as we age, cellular concentrations of cGMP decrease. Viagra works to achieve and maintain erections by (1) enhancing the effects of nitric oxide, and (2) maintaining higher levels of cGMP, the two key players in penile erection. The way Viagra does this is to selectively inhibit the cGMP-destroying actions of PDE-5. By blocking the actions of this enzyme system, cGMP is no longer broken down. This leads to elevated cGMP levels in the corpus cavernosum. This in turn prevents relaxation of the smooth muscle in the corpus cavernosum. http://www.doctorg.com/viagra2.htm
Call me the king of copy and paste. Hey, these guys can say it better than me ;).
Danny,
With that that large intake of fruits and vegetables per day, I think any good multi-vitamin would fill the bill. I have taken up to 6000 mg of L-arginine with no noticeable ill effects and I would not likely take less than 3000mg. This is nothing more than a gut feel for what I positively react to. I would also consider upping my ALC to 3000 mg per day. I have never read a single negative effect from ALC and many positive effects unassociated with Peyronies Disease. Since you are in the early stages, this is the best time to try to reverse the damage or at least hold it where it is.
25 mg Trazodone with a snack for absorption right before bedtime is a no brainer for me. The cost is 1/1000 of the cost of Viagra. It has far few side effects, and tends to give nocturnal erections when your oxygen levels are at their highest. It gives me firmer erections than a 100 mg dose of Viagra. It does work much better with nocturnal erections than it does with stimulated erection for me, so you may want some Viagra on hand if you need that boost for performance (actually I prefer levitra because food is less likely to block absorption). Also there are theories that Viagra both helps and worsens Peyronies Disease. It may have benefits that exceed just blood flow but for me Trazodone is tops for blood flow.
Welcome aboard. If you have to have Peyronies Disease, then we want you right here as an active posting member. All for one and one for all.
Hawk,
Thank you so very much for your posts, and those of several other members, on the benefits of trazodone. I had positive results the first time I used it, but I wanted to use it for three or four days before posting. IT WORKS!
I cannot think of any reason why, at the level of 25 mg., someone would not be willing to give it a try. It DOES increase nocturnal erections. I DO have a "fuller" feeling in my penis when flaccid. I also believe that it is helping the part of my penis that doesn't get as much blood flow (due to plaque) with a stimulated erection.
I have a medical background, so I don't want to sound like a WOW! GEE! GOLLY! TRY IT NOW! kind of person; I tend to be rather skeptical, but this works, it sure does...
Scott
I responded earlier, but for some reason it did not post.
Trazadone and viagra work through different mechanisms. But it is not the effect on erections (nocturnal or otherwise) that make the doctor recommend viagra. Rather it is is the specific effect as a "phosphodiesterase inhibitor" that leads to a specific antifibrotic effect.
Thus, the effect of viagra is to break up fibrosis, not to induce erection. The use of the l-arginine, viagra and pentox together is based on recent studies showing that a multi-mechanism approach to preventing/treating fibrosis works better than a single drug alone.
Again, the viagra is not prescribed to induce erections - it is to reduce fibrosis. Don't substitute trazadone for viagra in this instance. And be cautious about combining them (I have seen more than one sexual dysfunction center recommending against that).
Also, you need to see if your doctor can get it approved for off-label use, and thus paid for. It may require appeals, but it is worth fighting for!
Tim
Tim,
Do you think the colostrum in the ultra mix would help with wound healing or scar tissue?
Rico
>> Do you think the colostrum in the ultra mix would help with wound healing or scar tissue? <<
I wouldn't even want to guess...
Colostrum as you know, is the milk that is released early by the breast feeding mother, before let-down and delivery of the more fat-laden "good stuff". It provides a natural form of passive immunization to the baby, who is without a completely functioning immune system.
I sort of think of colostrum as a baby food - as in, FOR babies. The idea of drinking it is too weird for me - how could I participate in the deprivation of a child of what was rightfully his or hers? What baby went without colostrum so that I might drink it.
When John D Rockefeller died at an ancient age in 1937 (in his late nineties), at the time of his death he was feeding exclusively on the milk of new mothers. Young impoverished (mostly Irish) women breast fed him - he suckled at their breasts - and he apparently proved that there is no behavior too degrading to participate in if you are wealthy enough to afford it. Nevermind that the children of those women probably died (for to not breast feed, or to go into a "foundlings home" carried a >90% mortality), he got his.
So, me? I don't drink colostrum!
Tim
Tim,
I don't drink "mother's breast milk either" I know that some athletes take colostrum(from cows and sheep milk), and it helps with cell repair, and boost ones immune system. I know people on the forum have talk about the autoimmune system being out of whack ect.....plus I found colostrum in some supplements with aginine and acl ect....these suppose to enhance ones natural sceretagogue, mood enhance ment, also libido and cell repair....some CLAIM to retrace old scar tissue and repair it. I knew of most of the amino's but I thought the colostrum and once again....this is from cows is interesting.... so TIT for tat.... Oh, you don't have to suck on a pregnant cows utter, they have it in powder form:).....
Rico
Tim,
That may be one of the most bizarre stories I've heard. What is your source? I looked on Google (just imagine the key words I entered) with no luck.
Tim,
It is Bovine Colostrum from cows, comes from there mammary(sp) glands after 24 to 48 hours of birth. Like I said, just thought it was interesting....
Rico
>>It is Bovine Colostrum from cows<<
Oh.
::looking like Emily Litella::...
Never mind...
Years ago, a student of my older brother's, wrote a paper/thesis, that was made in to an incredible comic book about John D. Rockefeller. As far as I know it was never widely released, but could only be found in leftie bookstores in Berkeley and San Francisco. I had a copy for years, and it was fascinating. It was illustrated in the manner somewhere between a Zap Comix style, and a SuperHero type comic book. It was meticulously researched and included references. I tried googling for the facts I remember (that is the one that sticks out the most), but have never found confirmation of that "fact".
But I love it so much, and he was such a toadie anyway, I *want* to believe it. So I chose to.
Tim
Colostrum: A critical peptide and protein - Rich complex derived from the milk produced by Mammals in the first 24-48 hours of lactation that contains essential immune system and growth hormone progenitors!
They have 1.5 million cows in Australia, grass feed organic, and it is cold process, gel caps.... So anyone who thinks they can get away with going to the titty bar(two for one), this isn't the case:)...Oh happy hour brings on a new meaning......
I lived in the Philippines for two years in the Navy, 1973-1975....they had bolutes over there, it was a duck egg they buried in the sand, when you open it, the little chicken embryo was laying in the fetal position on top, you sucked down the juice and everything else. When a big strong child was born, they would scream Bolute, Bolute, meaning the mother ate many of these, they were full of nutrients, all the kick boxers ate them also...It took me awhile to get use to them....sometimes one has to be reborn ed again, peel back the layers and find the source....
TIT for TAT or TIT for health....
Does anyone know if they have Bolutes at HOOTERS!
Rico
Rico,
You give new meaning to the phrase "Real Men Eat Anything"...
BTW, any news betewen you and that woman who offered to come over and "kiss it better"? You may not be ready for her to enter your life, but that story is proof that women can help us overcome our fears about this disorder.
Tim
Tim,
Yes, women are great! I didn't take that one up on helping my Boo Boo, but I let the horse out of the barn one night, in the pool of all things, and everything worked find, I guess I had to find out if I could make her get her cookies and it was more for ego....self confidence thing....but swallow sex, in the swallow end of the pool, is swallow at best if your heart isn't involved, and mine wasn't. But I feel stronger everyday, tried to stay focus at work and help as many people as I can. I work in finance, a mortgage broker and it makes me feel good to get someone there first home(most of my clients have been turned down by banks), and treat them with respect...So with work, exercise, reading ,cooking and movies and of course my new and great peyronies Hobie:), I keep busy....I have plan, and I found in life, you have to work your plan, and mine is thacker formula two hours every night, supplements, diet and exercise and soon the VED 26 week protocol to pray for everyone and smile as much as possible....it will take a long time to get the lost of my wife and step sons out of my mind, she ran away, far away....Ican only hang on to the memories now....but when I ready, it will be in mind and body and spirit...and LOVE! Take care my Brother...Have a Bless Day!
Rico
Hey all. Thanks for the all of the help so far. I honestly expected to log on this morning and have a reply or two and instead there were a lot more. Very cool... Anyway, a few follow-ups:
1. Upping my L-arginine and ALC dosages seems like a good idea. Are there any common side effects of doing so?
2. Thanks to Tim468 for the Viagra info. I really would like to stay on the viagra/pentox/l-arginine combo but it does kill the pocketbook. I will see if the doc can do anything to help me there. I'm going to be switching health insurance providers at month's end so does anyone know of a provider (in the U.S.) that will pick up the tab for Viagra? I thought I had read about one that would a while back.
3. I didn't hear anything back on choline stuff. Is anyone supplementing with this. I've come across at least two things that talked about the benefits of acetylcholine thus far.
Thanks again. The support community here rocks!
Danny,
One thing that will help is to get a Rx for 100 mg Viagra and buy a pill cutter. That will save a little.
Liam
Thanks. The only issues with cutting the 100 mg Viagras in four are that it says on the package that the medicine isn't dispersed evenly throughout the pill and also, these are so darn small and tough to cut into four without losing a good chunk of the medication.
Anyone here getting insurance to pick up your little blue pill tab?
There are several made for Viagra advertised on the web . I bought mine at CVS and, although not perfect cuts, they are pretty close. Sometimes I get a little "powder". I always think should I take it by mouth or snort it (insert large nose or Pinocchio joke here). My Uro will only prescribe 8 (100 mg) each month. I have to use a pill cutter.
BTW, Don't snort Viagra. That was a .... ah say that was a joke ,son. :::: ala Foghorn Leghorn::::
Might want to move Tim's post 547 to the Light side. I was taking my Nasty ass Gota Kola my girlfriend bought me for this Peyronies Disease when I read his post. I spit about .87 cents worth out laughing.
Zig The Twig
For those of you concerned about being able to obtain/afford enough Viagra/Levitra/Cialis to do the job, let me once again remind you about Horney Goat Weed. The most commonly available Horney Goat Weed supplements contain 10% icariin. I use the ones mixed with maca, NOT the ones containing Yohimbe. I don't recommend Yohimbe. Icariin does the same thing as the Viagra type PDE-5 inhibitors. Icariin is a PDE-5/PDE-4 inhibitor. PDE-5 inhibits nitric oxide, PDE-4 activates inflammation. Horney Goat Weed is cheap and very available at health food stores. It takes about 90 minutes to reach peak effectiveness. I take some along with Arginine and then exercise since exercise also activates nitric oxide metabalism which is what we want to acheive in order to increase circulation. Here are some relevant studies:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12646997&dopt=Abstract
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=15329286&dopt=Abstract
Do not take more than recommended (about 100mg icariin per day) since excessive icariin intake is suspected of possibly causing kidney damage (rat studies, etc.).
- George
I am trying to find a way to make this MACA taste anything other han awful. Any ideas out there??
Tim
Tim are you taking it by a spoon or what.? I've been using an eyedropper with my Nasty ass Gota Kola. Then immediately chasing it with Crown Royal. I mean V8!
Zigwyth with a Twigith
You folks might need to go to the tablets or capsules on the maca. Sorry about the foul taste, its not what the web vendors promise. I wasn't aware of the problem because I have always just used the tablets. Those Peruvians must have an aquired taste or some really innovative preperation tecniques.
- George
I would take a good multi vitamin and eat plenty of fruit, natural is better and you will also get the minerals and fiber and energy you need. I'm watching the US OPEN, just sliced up four kiwi's, great source of vit c and other healthy nutrients. Just a thought:).
Rico
Hey guys. Back with a few more questions.
1. One thing that I've noticed health-wise that may or may not be related to my Peyronies is a fairly constant muscle twitching, primarly in my calves. I've noticed that this seems to get worse if I get dehydrated (sometimes result in cramps). I try to stay pretty well-hydrated (3-4+ L of water daily) but even when I am hydrated it still occurs. I started getting this twitching about six months ago and my Peyronies developed about two months ago which made me curious if there was a connection in any way. Also, I'm wondering if anyone can suggest what this might be or any ways to overcome it (perhaps more electrolytes...all I drink is water for the most part).
2. I outlined my supplement routine a few posts back (ALC, Vitamin E, Pentox, L-Arginine, Viagra and will be adding a multi soon). I'm wondering if there is anything else that should be high up on the list. I've read through this whole thread and ALC, vitamin E, a multi and L-Arginine seem to be the consensus picks. Anybody have any other strong votes for anything else? I was also curious as to whether there might be other forums on the Net where ED supplementation is discussed? I've read through the entire thread here and while there's some awesome info I'm a junkie and would be willing to scour some other forums on behalf of everyone here and report back any interesting findings. I have to think that there is an ED/Peyronies Disease connection and that we might be able to learn something from people who are fighting ED since there are presumably more of them and it's "been around longer" (at least publicly).
3. Another concern for me is getting all of the necessary amino acids. As I mentioned previously, I'm a quasi-vegan in that I probably eat meat two or three times a week and almost never consume dairy products (avg. of 1x/week I'd say). In general I think this is pretty healthy (I seem to recall reading studies connecting ED to high-fat diets with a lot of animal products). However, I also concerned that perhaps I'm missing something and that that has contributed to my developing Peyronies Disease. Any recommendations here? Maybe a whey protein shake once a day? I used to do Mypolex pretty regularly (weightlifting days) and maybe I'll get back on that bandwagon again.
OK, thanks in advance for any help. This forum and community seriously rocks.
"Subject line on this post edited for easy reference"
DannyOcean,
The muscle twitches in your calves sound like fasiculations. I had them for years with no apparent ill effects, but became concerned when I recently developed neuropathy in both legs. According to the neurologist, they can be harmless, or they can be symptomatic of a number of neurological problems. If you don't have any other symptoms, such as pain, burning sensation, aching, stabbing feeling in your legs, etc. they probably are harmless. However, I'm not a doctor. A neurologist can perform nerve conduction studies and/or electromyelogram (EMG) to determine if there is a problem.
As for a connection with Peyronie's, you raise a question that is currently perplexing me. In my first post on this forum, I asked whether there might be a connection between pulmonary fibrosis/interstitial lung disease, polyneuropathy, and Peyronie's, as I had developed all three within a two-year period after enjoying 53 years of pretty good health. So far, my guess is that the lung problem and the Peyronie's are related, but I need to see at least two more specialists before I will know. The neuropathy is still hanging out there.
The short answer to your question is, no one seems to know....
Danny,
When your body isn't getting enough calcium and magnesium, which on your diet probally is the case, your body(nerves) are confused and twitch. Calcium makes them contract and magnesium makes them relax, once again the off balance can cause this. You need to get a good mutivitiamin and mineral complex along with good lean protein, Go organic 6 to 8 oz a day over a couple of meals. A good mutivitiamin and mineral is centrum advance liquid, it has magnesium and zinc and iodine in it also, which we need for wound healing.
Muesil is the best cereal you can get and I would mix in a berry yogurt, this also has silica in it, a mineral salt.
Take care,
Rico
Rico, what exactly is muesel? Is it a grain, or something like gritts? Keep the Faith...Blink
Blink my good friend,
Muesli was originally developed in the late 1800's by a Swiss Nutritionist, Muesli is a delightful cereal made from a blend of whole grains, dried fruits, nuts and seeds.
I eat mine cold, mix with yogurt and let it sit for a couple of minutes....I started this for peyronies because of its nutrient and silica, the personal doctor of the Queen of England use to prescribe silica for patients with peyronies....instead of taking silica, I found foods with it in it, plus muesli is full of other great ingredients for optimal health. Bob's Red Mill, is organic and I use this one....
Best regards,
Rico
Rico, I took one of your epsom salts baths earlier. I'm glad you brought them to the forum. If for no other reason, it is very relaxing. It also gives me time to reflect on all of the positive things in my life. If this cereal is as good as those baths, I'm in! Do they sell that stuff in the supermarket or in health food stores? Keep the Faith...Blink
"Subject line on this post edited for easy reference"
Danny,
Have you ever heard the saying "You aren't worth your salt", or "He is the salt of the earth"?
Salt was more valuable than gold at one time. When I was a wrestler in high school, 1968-1972 we had a salt dispenser on the wall, we took the tablets to keep from cramping, we cut a lot of weight also, of course we know now we don't need to take this because of the fortified foods, especially fast foods, Table salt has iodide in it. Now with a extreme healthy diet, you might be missing this important mineral in your diet....drink v8 it has a good supply and don't be afraid to use a little soy sauce or some sort of salt....shake on brother!!
Rico
Blink,
You can get it at most stores, they all seem to have a small organic or natural section these days, I get mine at a Kroger's. I go to Wild Oats also, this is one of the best organic stores, and for ED, well the girls in there are all hippie types, no bras ect..I was looking at some veggies and the mister came on and I thought man, this place is great, every one was real perky if you know what I mean....
Rico
Thanks guys. Salt, calcium and magnesium it is. Starting on a multi-vitamin should help here and I'll put a little extra soy sauce on my brown rice in the future. :)
In addition to the muscle twitches the other abnormal thing about my life right around the time I contracted Peyronies was that I was going through a lot of anxiety (still am a bit but not nearly as bad as a few months ago). I can't help but think there was a possible connection there. In fact, I remember having a very decreased sex drive over the 3-5 months prior to contracting Peyronies. Mind-body connection at work huh? Anyway, I've seen some people mention a place here where people can post their personal history and I'd like to do so but I can't seem to find the forum.
Oh, and if anyone has suggestions on other supplements and/or the role of amino acids on Peyronies Disease I'd love to hear. :)
Thanks!
DannyOcean,
You go to the main forum and scroll down, you will the members profiles and Hawk give you a insight on how to post, I was going to put mine on there now that I have had this delight in my life for four months now...
I have been taking acety L Carnitine now for about 10 days, I have found that it has help with my mood and clarity....if you think why do body builders take amino supplements, because they help to promote tissue recovery and enhance over all health....arginine is great for wound healing....Instead of me rambling like I do:), I would go to amino acids, BCAA(branch chain amino acids), on the net, so much information and on this forum. I thank God for this forum, it has given me so much good information.
We are different, age, placement of plaque, health issues, ect.....the old adage one pill does not cure all, is so true in peyronies, what works for one, might not work for another.....I thank God everyday that my condition isn't worse than it is, I use to curse it, and say why me....I know there are people out there that have a very bent condition and this makes me sad....sometimes I know I have given post saying that it isn't that bad, or this is what I would do, but over time, maybe some experience(four months), I have learn more about peyronies from reading and collection information from peyronies suffers...I'm trying to be more compassionate for others and always to remember we are not the same...I never had pain, only very slight curve, buckling when not fully erect....lost of length, but two thirds of unit above plaque looks fine....so if I could get back 50% of what I had, I would be happy, and I now believe this can be done with VED.....I believe in alc, arginine and what a good bcca mix can do to better ones health and give more oxygen to your tissues for healing, too much research, this should be part of your plan....
I read a book years ago on walking meditation, I have chosen this also as a why of dealing with stress and over all circulation, it is easy(all you need is good shoes), and I can do it everyday, I choose a park, sometimes I jog, but I go from three to five miles, I sleep better and feel healthy....going to the gym just three times a week wasn't working for my stress, I had to find something that I could do everyday, work out my problems and be with the birds and trees or just being outdside..I look at my epsom salt bath as self care, it is a treat for me, candle, music, relax...you deserve this...
I encourage everyone to read, knowledge will set you free....and find someone close to age and condition to email and you won't feel as alone with your situation, I have done this and it is funny how many people I have common interest, went through a divorce, same stress, same bend ect.....well I off for lunch, going to the park and walk it off...take care and God Bless...
Rico
Thanks Rico. Exercise helps me out a ton too. I feel so good after exercise that I don't even think about what else might be bothering me. Running and yoga are doing the trick for me these days.
I'm also curious about what supplements make me "hang better" too. I know that the period before I contracted Peyronies I was "hanging worse" than ever in my life. Again, probably a contributing factor.
I've read from others here that Gingko is good for this. Hawk stated that L-Arginine works well for this. I've also read about a borage/evening primrose oil massage as being good.
Anything else y'all can suggest for hanging more fully. I have to think there's a strong connection between full hanging and blood flow and wound healing.
Danny, I use L-Arginine, 25mg Trazedone, and the trusty VED. I believe that anything that promotes good blood flow would help. I know that by getting evening erections from using trazedone has helped. From what I understand, evening erections are a thing that happens a lot when we are younger. The enzimes produced by the body and other chemicals that go with the erections decrease as we get older or stop having sex as often. It makes sense to me that if you don't exercise, you lose the benefits of the body's natural chemicals. Keep the Faith...Blink
Danny,
Hawk is right, arginine will give you better blood flow. If you take a supplement with NOX3, what you are doing is getting several forms of arginine, I take this and some of my other favorites, it has three types of aginine and the nitric oxide release give me cell-signaling vasodilators(blood flow), I can tell a difference.
I highly suggest for anyone supplementing that they look at there medical history first, if you have liver, thyroid problems ect...be careful, read the labels.
Most of the companies I buy from have been around awhile and have some research to read, if you go on a body builder forum, you will get some good information there also on amino acids.
I have posted the aminos I like, and I know now Zig is on a good one also. It makes sense to me, these people are trying to get more blood flood to there body and also increase tissue healing, I think there science and trial and error or research is powerful for us, this is why I piggy back on there research.
I'm still researching amino blends now. I do take the alc outside of the blend I'm taking now. The one I take now really focuses on blood flow and tissue repair.
We are creatures of habit, so is are body, that is why I will probally cycle off this brand and go to a new one with a couple of different aminos in it for 60days, maybe add lysine and turine ect....and then cycle back....confusion in muscle and tissue memory can be a good thing, makes the body adjust or maybe turn on a switch that wasn't on....Once again, this is Rico logic...so take with a pinch of salt, or some soy:).
Rico
Thanks Rico. I'm definitely going keep on the L-arginine (probably bump my dosage up a bit too) and look at NOX3. I'll also continue to research amino acids and report my findings back here.
Another question for y'all (I'm full of them these days :)). What do you think about enzyme therapy? I've been reading more about it and wondering if there could be a connection here in terms of the healing process. I recall bromelain being mentioned several times here on the forums and was curious as to what other connections there could be between enzymes and healing Peyronies Disease. Any thoughts?
I am going to try Nitrix hoping it will be easier to swallow. They recommend 3 caps 3 times a day. I will take 2 caps 3 times a day. Note this has l- citrulline as well. I paid 31.95 for 180 caps. I will let you know if it is any good (at least in my opinion).
Liam
QuoteNitrix
Supplement Facts
Serving size: 3 tablets
Servings per container: 60
Amount Per Serving
L-Arginine Alpha-Keto-Glutarate (AAKG) 3000 mg
CRTS2 (controlled release technology and support system)
Methocel (micro-polymer hydrophillic ether matrix)
Phosphaplexx (Calcium phosphate, Di-potassium phosphate & Sodium Phosphate)
2CM (Dicreatine Malate)
L-Citrulline
NAD (nicotinamide Adenine Dinucleotide)
Folic Acid (Folate) 1897 mg
Other Ingredients
Magnesium Stearate.
Liam, where do you buy this nitrix from? The arginie I'm taking is so large it would gag a horse. It would be nice to take something a little easier to swallow. Thanks Keep the Faith...Blink
Just a quick note on choking down pills and capsules.
If you have a capsule, or a mouth-full as I often find, you put them in your mouth, take a largish sip of water, and tilt your head a bit FORWARD. That allows the capsules to float (they float, remember?) to the back of your mouth - and they will go right down.
For pills, which sink, I place them on my tongue, take a mouthful of water and wet them, and then tilt my head BACK, and wait for a full 1-2 second count, and then I swallow. You have to not only tilt to let them sink to the back, you have to give them time to sink.
And for a mouth full of caps and pills? I tilt my head back for a 1-2 count, then bring it back to a slightly forward tilt, and swallow. The pills drop back and stay there; the capsules join them when I tilt forward again - and they all go down easily.
Make sure that you get them all the way down, by drinking a fair amount of water too as a chaser.
Tim
Rico had suggested trying VASO from GNC. 240 capsules. It has all the supps we've been discussing(Arginine,Citrulline, Ornithine, )(NOS--Nitric oxide stimulator, basically,)Very quality ingredients.I bought a Gold Card and every first 7 days of the month, you get 20% discount. In addition, if you find any of their products or competitors , on their web sites cheaper, they will match price. I bought this at $48.00 and 2nd bottle half off($24.00), with the 20% off as well.. Along with ACL, trazedone(25mg) epsom salt baths, and a mix of oils massaged into little henry, I am noticing fuller erections, hanging bigger, and less pain.Just started Pentox a couple days ago. I space everything out with light meals now.
Ziggy
Anyone know if Arginine or Carnatine effect your mood, i thought i read somethin about chemichal imbalance.
Blink,
I oredered it from the internet. I am using a powder now. I thoght it would be easier for my stomach to tolerate and easier to swallow. Wrong (it has my stomach on fire)and Wrong (bitter). I prefer the 1000 mg GNC "horse pills" to the powder. The Nitrix is 1000 mg per cap. That will make adjusting dosage fairly simple.
Liam
I ordered several of the things I take in bulk powder form and they are NASTY! I can't even smell them, much less swallow them.
I am going to order a capsule filling device from the place I ordered the bulk stuff from. In addition to having some things I cannot find locally (like propionyl L-carnitine), the prices are about 1/3 to 1/4 of the cheapest locally available supplements. It adds up, since I am taking so much.
As of now, my regimen includes:
acetyl l-carnitine 1gm twice daily
citrulline 1.5 gm twice daily
alpha lipoic acid 300 mg twice daily
primrose oil (still figuring dose)
Dr. Weil's vitamin E 400 mg twice daily
"Triple Ginseng" 2 caps twice daily
Horny goat weed with
Maca 2 caps twice daily
a variety of vitamins, including coenzyme Q and vitamin C.
VED exercises stretching - not doing the different diameter cylinder protocol
Sporadic verapamil iontophoresis
I am thinking of adding PLC, Trental, and examining more closely the reason for failure of ionto (amperage output variability, skin impedance, etc) - I amy try decadron instead).
Here is the "capping supply" link:
http://www.goendurance.com/?cPath=131
Tim, can you expand on the reasoning behind taking Horny goat weed with maca?
I know little of this. I'm basically taking/doing everything you are in addition to Gota Kola - http://www.richters.com/newdisplay.cgi?page=./QandA/Medicinal/19980906-8.html&cart_id=5957169.8723 and
Tamanu oil - http://en.wikipedia.org/wiki/Tamanu_Oil#Treatment_for_scars, mixed with emu oil.
Thanks
Zigwyth witha Twigyth-- 8)
Tyler,
As soon as I was on Acetyl L Carnitine for a few days I noticied a big improvment in my mood. Also before I loved to drink beer a lot and really put them away, ever since starting this medicine I've totally quit cold turkey and haven't had a drink in months. I read a study somewhere on the internet that ALC can help with alcohol addiction, while I wasn't an alcoholic I was drinking at school two or three days a week some weeks, and LOVED to drink, although a lot of people did. The L Arginine has clearly given me better bloodflow to my penis after I added that, I also take some ALC pills mixed with Alpha Lipoic Acid. But yeah I can tell the ALC has helped my mood, I run everyday now to get in shape, can't hurt your disease or your health! I may look into the GNC mix Rico was talking about and just take that rather than all these different pills.
A cautionary note for anyone taking more than 400 IU's of vitamin E and working with any VED. If you take 800 IU's or above the vitamin E will act as a blood thinner and then when you use the VED you will get red dots on your penis. I had no problems when taking only 400 IU's of vitamin E, then when I increased to 800 IU's I got these dots, then when I stopped taking vitamin E altogether they went away. During this time I was doing the exact same pumping routine and using the same amount of pressure with no pain, so I know that it was not the pumping that caused the red dots.
Scierolysis, or the dissolving of scar tissue, utilizes bee venom therapy. You can read about it in the American Apitherapy Society- Journal- Enhancing Sclerolysis with Bee Venom....
The hyaluronidase is interesting with the attacking of scar tissue ect....proponyl L carnitine I know has this also(Tim is this why you looking at this supplement)?.
I just mention this because I made a little joke on the other post about bee venom....
At first when I got peyronies I was so concern about dissolving the plaque or scar.....now I know if it goes away my problem is still there, it is the elasticity of the tunica that I care about, removing the scar means nothing if lost of length ect..girth isn't resolved for me.....
I remember seeing this show where the local doctor of some tribe would take the bee and use the stinger and live bee to give the person the venom, I can't remember what it was for now.....if I ever get to the point where I'm humping a honey hole, please someone shoot me:)!!!!
Rico
The reason that I am using propionyl L carnitine is because it is one of the few medicines or supplements that has been shown in a blinded trial to lead to improvement is Peyronies Disease. Used with ALC in an about 50/50 mix at about a total of 3-4 grams a day in divided doses, it leads to improvement.
We need to remember to share information that relates to Peyronies Disease in proven, or semi-proven or even anecdotal ways. Although it is important to talk about concepts such as inflammation, or breaking up scar tissue, or creating an anti-oxidant milieu in the tissue, we alwasy need to remember that we are being read by newcomers who are looking for solid information.
Horny goat weed is an interesting example. It has properties that are similar to viagra, and it is all well and good to talk about using it to either promote healthy erections, or as an anti-inflammatory medicine. But it is Viagra that has been studied - not goat weed. So, I am willing to discuss goat weed, but not to *recommend* it as a way to treat Peyronies Disease. The fact is that no one knows if that helps. Similarly, there are NO DATA regarding Peyronies Disease and many other supplements, other aminio acids, other herbal remedies including some we talk about all the time!
Maybe we need a separate posting thread called "Conjecture and Discussion", instead of Vitamins etc. I just strongly believe that we need to be judicious in how we talk about wht *might* work for someone. I believe our advice ought to be based on *some* sort of evidence.
Tim
Here is my rationale, and an update on how I am doing:
Horny goat weed for it's phosphodiesterase activity that makes it work "like" viagra. It may not be much cheaper, though, unless you look for a good deal. Mine just came with Maca in it (I didn't notice when I bought it). It is definitely leading to harder erections for me (see below).
I take the maca because I believe that my testosterone levels are low, and this can affect that axis by either reducing other androgens, or increasing bioavailable testosterone. I took it to promote healthier erections and libido. Not sure of any effect yet.
Finally, in a head to head comparison I read, "Korean Red Ginseng" led to no different effects than placebo on a lot of erectile dysfunction scores. But it did do one interesting thing.. it lead to longer erections at night, which is what trazadone does. Basicly, think of viagra as opening the flood gates to let blood into the penis, and trazadone as a drug that prevents the blood from draining out. Well, the ginseng worked better than trazadone on that one thing. So, I postulate it may have an alpha adrenergic blocade effect (like trazadone).
So, I happened to start both at once, and I have been waking up - um, as hard as a rock. I have stopped both, and I plan to selectively restart one at a time (I am starting with the Red Ginseng - actually a mix of all three common ginsengs), to see if I can figure out if both or only one is needed.
Tim
Tim,
You are right on the blind leading the blind. I know you are a smart man and it doesn't take long from reading your post to start to look at hard anything you are doing....you have a following:)....
You listed your supplements that you take(which I feel is great)...now someone reads you take horney goat weed....this in a way would promote it, why would Tim take it....
Myself I don't take it, I feel I get enough blood flow from the arginine sport mix and exercise....
I don't want anyone to stifle anyones thoughts, you like me I feel can weigh out our choices and it seems if something comes on here that is way out there, then it is soon to be brought to everyones attention...
I think are strength lies in our open discussion and mature and understanding ones needs to take control of his own condition, and understand that not everyones condition is the same also....
When someone brings up chripo or pentox ect....it makes you dig for information.
I know so many times people say, what the heck is good for you these days, one day your turn on the news and they say that will give you cancer, the next day someone says, that same thing will cure cancer....
My urologist(suppuse to be top in field), told me to take potaba.....I didn't because I didn't believe it, I like the guy, but that was a choice I made base off of reading information from people with peyronies....
I have read your list of supplement list.....and several others on here and made my own choices...I would feel you would be a taker and not a giver of information and not in the true spirit of the forum if you wouldn't tell us what you are using. I have respect for you because you just don't read post, but put your thoughts down for us.
The "author" or some of the studies out there also are too be taken with a pinch of salt...I worked in corporate finance for a short period for a small investment bank who worked on small medical deals, ones trying to raise money in the equity markets, when you need to get more funds to fuel the rocket ship to continue your research ect....well, these studies can start looking more promising than they are....Cash Is King! and I know that is a fact....been there, seen it happen...
I know I wouldn't be on here if my doctor had the answer...and all you guys just reading(like I did for the first two months), when you are done, we want to hear from you, throw in your two cents....keep it clean and mature dialogue, agree to disagree...it looks like to me about 5% of the members post on a regular basis.....
Instead of conjecture and discussion, can we call it Rico Logic:)....
In life people say Flow with the Go....once you understand Jiu-Jitsu you Go with the Flow....
Rico
I had the same response. I stopped and the strong night time erections stopped (although I also stopped 2 other supplements at the same time). I plan to start again on the first of the month (using my GNC card). I will report any effect or lack (hope not) of effect.
Does anyone have information on this supplement? I am aware of some of the claims. The only info I've found, so far, is from sites that sell the product.
Rico said: "I know I wouldn't be on here if my doctor had the answer"
Isn't that the truth! None of would be here. So the search for help must continue.
Here is my personal way of doing this (here). I try to talk physiology, because I know it well. I figure that is something I can contribute that is unique or special, and can be of value to others. So, when I read something that does not make sense to me, I speak up. One example has been the conjecture about how a VED works.
Now, I do not contest the notion that VEDs work - I want to discuss HOW they work. Similarly, I am interested in talking about HOW horny goat weed (HGW) might help. In that case though, we have no evidence that it does help. Instead, we are taking some information (that viagra has an antiinflammatory effect) and extrapolating it to another viagra-like thing (HGW) to discuss.
One other little thing (added as a tag here) - I have not read that oxygenation is "better" with nocturnal erections. I read it here - can anyone tell where that came from?
Tim
There have to be a number of physiological conditions that can encourage the kind of scarring that causes peyronies. So, depending on what the cause(s) is/are, the solution might be different for different individuals. zigwyth inquired about horny goat weed. So, now that Tim has posted his comments, let me add the following. Horny goat weed is one of those herbs deeply rooted in Chinese herbal medicine that is now becoming popular in the west. Horny goat weed contains icariin. Icariin is known to be a PDE-5/PDE-4 inhibitor. Many people who suffer from impotence have the problem because of an excessive amount of PDE-5. PDE-5 is the regulatory substance for nitric oxide. In the case of male sexual function, too much PDE-5 causes impotence. On the other hand too little PDE-5 (or too much inhibition of existing PDE-5) causes priapism and other bad effects. So it is extremely important that PDE-5 levels be properly controlled. The same is true with hypertension (and perhaps other aspects of metabolic syndrome). Too much PDE-5 in the vascular tissue and that tissue atrophies and hardens in the absence of nitric oxide. But similarly, even in the vascular system, PDE-5 is necessary to prevent an overproduction of nitric oxide which can result in hypotension as well as other bad effects. Liam brought up Cnidium Monnier. Cnidium Monnier is another Chinese herbal substance which is claimed to be a PDE-5 inhibitor. At this point Cnidium Monnier is less known in the west and is usually found only as a component of more complex (usually body building type) supplements. The problem then becomes, what are the effects of these other substances, or if I buy the Cnidium Monnier directly from the Chinese herbalists, what sort of toxic payload might the Cnidium Monnier be carrying along with it. Certainly it is an interesting herlbal substance, but at this point I am not daring enough to incorporate it. I am also put off by the lack of solid research behind it, at least horny goat weed has some solid research in terms of its effect on PDE-5. The other interesting aspect of horny goat weed is that it is a CNS depressant (it acts against cortisol) in contrast to substances like yohimbe which, while being a vascular relaxant (via a non PDE-5 channel), also tends to be an anxiety stimulant. Unlike horny goat weed, Viagra inhibits not only PDE-5 (nitric oxide pathway), but also PDE-4 (inflamation) AND PDE-3 (optic issues), and thus is a non-specific PDE inhibitor. Both PDE-5 and PDE-4 effects may be helpful in the case of peyronies, since nitric oxide not only dialates blood vessels, but is also known to disolve plaque (collagen) and rejuvinate atrophied tissues. And of course the anti-inflamation effect of PDE-4 inflamation is important for obvious reasons. Levitra and Cialis tend to be more PDE-5 specific with Cialis being known for its extremely long lasting inhibition of PDE-5. Incidently cocoa is a broad spectrum PDE inhibitor which could cover a range of topics and studies are showing that consumption of cocoa results in demonstrably improved health. zigwyth also inquired as to why horny goat weed is often combined with maca. The answer to that question goes back to the whole concept of Chinese herbalism. While western medicine seeks to isolate and employ highly refined substances a 'mono therapies', Chinese herbalism takes the opposite approach constantly seeking to find synergies between naturally occuring substances. Thus there are some interesting synergies of horny goat weed with maca. Maca is also know to improve sexual function through different mechanisms and is reputed to increase alertness and energy without stimulating the central nervous system. Maca also contains high levels of arginine which is a perfect fit with the PDE-5 suppressing capability of horny goat weed. Horny goat weed opens the channel, maca supplies the fuel. All of this is very subtle, but also very incremental, with results claimed at least to become more obvious over time. Going back to Viagra, Viagra was initially developed as a medication for hypertension, then its sexual effects were noted and the rest is history. There is a lot more money for the drug companies in fighting impotence than there is in fighting hypertension. At this point Viagra is actually marketed queitly under another brand name for the treatment of pulminary hypertension and Cialis is in the midst of trials for the treatment of essential hypertension. The more one studies the research, the more the links between metabolic syndrome and peyrones (and other degenerative diseases) become obvious. I certainly hope this information is helpful to better understanding of these substances. It is all observations that I have gleaned through many hours of searching the internet and comparing notes. If anyone has further questions, or corrections, please feel free to chime in. We are all learning from each other, and through that, hopefully finding things that are helpful. And I can attest for one that there is much I have learned right here on this forum. God bless you all.
- George
Tim,
I read that right out of our peyronies resource library, thanks to a piece Hawk pulled off the internet by a seemingly credible professor/pharmacist.
"Oxygen from the blood has an important role in erectile health. Oxygen levels vary widely from reduced levels in the flaccid state to very high levels in the erect state. During sleep, oxygen levels are high and a man can normally have three to five nocturnal erections per night, each lasting from 20 to 40 minutes. These nocturnal erections are thought to be part of the body's natural maintenance of healthy erectile tissue. Oxygen levels appear to affect two substances that are important in achieving erection: transforming growth factor 1 (TGF-B1) and prostaglandin E1."
Here is a link to the full text of the literature.
http://72.14.207.104/search?q=cache:ZbXciNt3hSIJ:www.continuingeducation.com/pharmacy/impotencetreatment/impotencetreatment.pdf+erection+%2Btrazadone+%2BPathophysiology&hl=en&client=firefox-a
Thanks ComeBackid - that makes it clearer.
I tend to think both in terms of oxygen content and O2 delivery. Since the oxygen content would not be expected to be different in blood at night versus the day (in fact a bit lower because of decreased ventilation), I was confused. The issue is that DELIVERY is determined by both the content of the blood, and how much blood is delivered. Thus, the oxygen concentration is not greater at night - simply the amount of blood, which thus delivers more molecules that way.
Here is the simple analogy (which always works best for me!):
A train carries oranges from station A to Station B. To get MORE oranges to B, we have some choices -
1) more box cars to carry oranges
2) load more oranges on each box car
3) have the train go faster.
The analogy is
1) more hemoglobin or blood cells
2) higher oxygen tension
3) increased blood flow/rate
It is the increased blood flow that increases the oxygen, not something magical about nighttime.
Besides, it is often socially unacceptable to walk around with an erection at work! ;)
Tim
I would like to thank George and Tim for not only this particular info, but the fact that you continue to offer your insights with reports or facts for the basis of your statements. Everyone has an opinion on what they believe will or will not work, and with this Peyronies Disease, I feel we owe it to other members to provide these reports, studies or facts before we start "pushing" our opinions. I for one, would research out these treatment options such as Horney Goat weed and maca or ask other members their thoughts about why they take these. Thus the reasoning behind the question to Tim. If anyone were to ask me why I take Gota Kola, I would certainly offer reports and studies on it's medicinal benefits such as the following:
http://www.nutritionalsupplementsadvisor.com/gotu_kola.html
The fact that another member thinks it's redundant is irrelevant to me. As far as Monkey see Monkey do, everyone has a brain. They might start using it.
Zig
Could we load more oranges? Would it help? HMMMMM
I wish my professors had such clear analogies.
Liam
Well guys I went down to the local GNC store today to see what you guys have been talking about on here.
First off, I checked out this VASO pill that Rico was talking about. From the ingredients it doesn't look like it has L Arginine, ALC, and L citruline in it. It seems to be designed for body builders with creatine mixes, tri-creatine that is. The guy at the store said its what body builders use to build more muscle, I'm kind of confused as to who concluded it contains the l agrinines and acl etc that we need to treat peyronies.
Second I checked out the Nitrix, once again the guy told me this is for body builders and deals with muscles and building them up, he also said the whey protein is for that to, I"m not sure how these are effective in attacking peyronies, can someone fill me in?
I did see a MEGA MENS pill which seemed to have tons of vitamins and minerals in it and even have l-gutamine, and l arginine in it, is anyone taking this? Perhaps taking to many vitamins and minerals like that at once with excess calcium could be a bad thing?
I checked out the red korean ginseng and a "tri ginseng as well," man one could sort through all the supplements in that store for hours, they don't really say on them what they do either, except the body building ones. Checked out the dhea and testosterone, the store associate (body builder), told me to stay away from that stuff cause it will effect your mood and what not.
Heres the way I see it:
ALC- We take this because there is some evidence through studies it can stop pain and may reduce curve
L Arginine- There is MUCH evidence it will strengthen the tone of blood vessels
After these two supplements I don't really see alot of the reasoning to take all the other supplements? Tim has also warned me it may not be a good idea to take the horny goat weed with macca with trazodone, so Zig and others taking both be careful. I seemed to be left confused after my trip today with so much stuff to choose from.
Korean Red ginseng and horny goat weed with macca all do the same thing-increase sex drive. The impression I got from Tim was if your using any of these to not use trazodone. The question is which is better korean red ginseng, or horny goat weed with macca?
Also I guess it would be a bad idea to take viagra with trazodone? Or for that matter to take viagra with red korean ginseng or horny goat weed with macca?
ComeBackid
A short list of studies:
Effect of Epimedium brevicornum Maxim extract on elicitation of penile erection in the rat.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16527595&query_hl=53&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16527595&query_hl=53&itool=pubmed_docsum)
Flavonoids derived from herbal Epimedium Brevicornum Maxim prevent OVX-induced osteoporosis in rats independent of its enhancement in intestinal calcium absorption.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16413840&query_hl=53&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16413840&query_hl=53&itool=pubmed_docsum)
Epimedium brevicornum Maxim extract relaxes rabbit corpus cavernosum through multitargets on nitric oxide/cyclic guanosine monophosphate signaling pathway.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16395327&query_hl=53&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16395327&query_hl=53&itool=pubmed_docsum)
Antidepressant-like effect of icariin and its possible mechanism in mice.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16380159&query_hl=53&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16380159&query_hl=53&itool=pubmed_docsum)
New estrogenic prenylflavone from Epimedium brevicornum inhibits the growth of breast cancer cells.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15729618&query_hl=53&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15729618&query_hl=53&itool=pubmed_docsum)
Cytotoxic effects of Coptis chinensis and Epimedium sagittatum extracts and their major constituents (berberine, coptisine and icariin) on hepatoma and leukaemia cell growth.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=14756686&query_hl=54&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=14756686&query_hl=54&itool=pubmed_docsum)
Effect of Epimedium sagittatum on quality of life and cellular immunity in patients of hemodialysis maintenance.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=7647539&query_hl=54&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=7647539&query_hl=54&itool=pubmed_docsum)
Effects of Epimedium sagittatum on immunopathology and extracellular matrices in rats with chronic renal insufficiency.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=8070296&query_hl=54&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=8070296&query_hl=54&itool=pubmed_docsum)
The testosterone mimetic properties of icariin.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16751992&query_hl=42&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16751992&query_hl=42&itool=pubmed_docsum)
Effects of icariin on erectile function and expression of nitric oxide synthase isoforms in castrated rats.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16281085&query_hl=42&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16281085&query_hl=42&itool=pubmed_docsum)
Protective effects of icariin on neurons injured by cerebral ischemia/reperfusion.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16232349&query_hl=42&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16232349&query_hl=42&itool=pubmed_docsum)
Effect of icariin on hypoxia induced vascular endothelial cells injury.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16025968&query_hl=42&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16025968&query_hl=42&itool=pubmed_docsum)
Effects of icariin on the erectile function and expression of nitrogen oxide synthase isoforms in corpus cavernosum of arterigenic erectile dysfunction rat model.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15329286&query_hl=42&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15329286&query_hl=42&itool=pubmed_DocSum)
Effects of icariin on intracavernosal pressure and systematic arterial blood pressure of rat.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=14990132&query_hl=42&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=14990132&query_hl=42&itool=pubmed_DocSum)
Effects of icariin on cGMP-specific PDE5 and cAMP-specific PDE4 activities.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12646997&query_hl=42&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12646997&query_hl=42&itool=pubmed_DocSum)
Experimental studies of icariin on anticancer mechanism.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12575282&query_hl=42&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12575282&query_hl=42&itool=pubmed_DocSum)
Influence of icariin on cell membrane of highly metastatic human lung tumor cell line.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12575062&query_hl=42&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12575062&query_hl=42&itool=pubmed_DocSum)
Icariin-mediated expression of cardiac genes and modulation of nitric oxide signaling pathway during differentiation of mouse embryonic stem cells into cardiomyocytes in vitro.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16490167&query_hl=42&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16490167&query_hl=42&itool=pubmed_docsum)
Antihepatotoxic activity of icariin, a major constituent of Epimedium koreanum.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=8824946&query_hl=2&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=8824946&query_hl=2&itool=pubmed_DocSum)
Effects of icariin on the differentiation of HL-60 cells.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=10743057&query_hl=2&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=10743057&query_hl=2&itool=pubmed_DocSum)
Efficacy of epimedium compound pills in the treatment of the aged patients with kidney deficiency syndrome of ischemic cardio-cerebral vascular diseases.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=10682558&query_hl=2&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=10682558&query_hl=2&itool=pubmed_DocSum)
Advances in study on pharmacological effects of Epimedium.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12528515&query_hl=2&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12528515&query_hl=2&itool=pubmed_DocSum)
Experimental study on effect of epimedium flavonoids in protecting telomere length of senescence cells HU.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15658653&query_hl=2&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15658653&query_hl=2&itool=pubmed_DocSum)
Osteoblastic proliferative activity of Epimedium brevicornum Maxim.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15830840&query_hl=2&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15830840&query_hl=2&itool=pubmed_DocSum)
Inhibitory effect of Epimedium extract on S-adenosyl-L-homocysteine hydrolase and biomethylation.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16125732&query_hl=2&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16125732&query_hl=2&itool=pubmed_docsum)
Influence of a Chinese crude drug on Ca2+ influx and efflux in rat visceral organs: investigation and evaluation by 45Ca.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16253508&query_hl=2&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16253508&query_hl=2&itool=pubmed_docsum)
And this really is just a short list ... the studies are endless ... anybody find anything interesting here?
- George
Fascinating stuff, George.
I can verify already that it improves nighttime and AM erections. No idea if it will help my Peyronies Disease though.
The osteoblastic activity is a bit worrying - do we really need new bone formation help?? Actually, i am too ignorant of bone formation to know if calcifications are due to the same mechanisms, but it is worrisome, as I think that osteoblastic activity is seen by Peyronies Disease derived cells.
Tim
I seem to be losing more posts...obvously rookie errors hard at work. ::)
Anyway, for those who want to know a homeopath's suggestions for ED, our physician suggests L-Arginine 1000 bid, pycnogenal 30-50 qd and chrysin 500mg qd. Actually is was my idea to use the combo of L-Arginine and pycnogenal and he strongly agreed.
Well, Tim, I just put it all out there, the good, the bad, the ugly, as they say. Actually, I am not sure that calcifications qualify as being 'bone'. I rather suspect that they are the result of calcium collecting in the soft tissues and that horny goat weed might actually cause them to be drawn back into the actual bone tissue where the body is supposed to store its calcium. At least we can hope that to be the case.
- George
"Anyway, for those who want to know a homeopath's suggestions for ED, our physician suggests L-Arginine 1000 bid, pycnogenal 30-50 qd and chrysin 500mg qd. Actually is was my idea to use the combo of L-Arginine and pycnogenal and he strongly agreed."
What is pycongenal and chrysin, never heard them mentioned before for peyroines or ED treatment.
ComeBackid
ComeBackid,
Pycnogenol..not pycnogenal...sorry, is known to increase NO production and we already know L-Arginine is an NO doner. Pycnogenol is a bioflvinoid, has cox-1 and cox 2 inhibitory effects which mean it aids in reducing inflamation. It's also known to aid in wound healing and potentially reduces scar formation. Entrez PubMed has quite a few good abstract articles on the substance found in the bark of a particular tree. Supposedly it has many uses from preventing blood clots to healing burns and asthma to treating ADHD.
FFmedic's best half, Swim
ComeBackid, I bought the Vaso at GNC. It has Tri-Arginine Alpha-Ketoglutarate, Tri-Arginine Malate, Citrulline-Malate, (3000mg)Also,L-Valine, L-Norvaline and Ornithine Alpha-Ketoglutarate 100mg, Creatine and other little goodies. I NEVER said it had ACL. Bought that seperate. I don't know the difference between the Tri and L-Arginine, and perhaps I should have researched more on that subject and I always would encourage anyone to formulate their own opinion and do their own research.I asked Rico personally what he might suggest in this area and he graciously offered the options.(Maybe I do have a Monkey see Monkey do mentality) :D. I guess I will make a( I am not in anyway advocating the use of these supplements, nor am I affiliated in anyway with GNC) note here.Just simply trying to purchase what I feel are quality ingredients at a better cost savings. Again, my own personal opinion. Oops --the glass is starting to crack---
Ziggy with the Twiggy
ComeBackid,
You also asked about Chrysin. Chrysin is a flavonoid. Besides being a powerful antioxidant it helps block the conversion of testosterone to estrogens, especially estrodiol. Estrodiol when high contributes to ED. Chrysin is also used to increase the release of, not production of, NO. There is no evidence supporting the claims that Chrysin will increase testosterone in humans but the wide use of it by athletes leads me to think some people believe it will. What I can say is that Paul's estrodiol went from 57 to 26 in about 7 months time. How much of that is from adding Chrysin is not real clear. It was 57 in January, 34 in May and 26 in July...so something reduced his estrodiol to normal. DIM wasn't doing it and the only thing new we added was the Chrysin. Swim
Holy Smokes George, That'll keep me busy for a while.
THANKS a ton!
Liam
Thanks for the "Short" List of studies George. I'll let ladylisa read them then explain them to me while I'm watching football this weekend. ;D
OOOps! Just kidding LL.
Henry and the boys were speaking.(Inside Joke)
Its truly amazing the claims that are made by supplement vendors for products like ginseng. Its also truly amazing the lengths that some traditional medicine folks go to in trying to prove it to be totally useless. But there is a bit of good scientific evidence behind Korean Red Ginseng. Here is an interesting link:
http://www.uspharmacist.com/oldformat.asp?url=newlook/files/alte/ginko.htm
There are some good pubmed links as well, I'll let you search them out for now, but I thought this page had a lot of useful info. (I haven't figured out why the link contains the term "ginko" :)
GINseng KOrean
Did I win?
My Nitrix came in. I was like "The Jerk" when the new phone book arrived.
The caplet is smaller than the GNC L-arginine but the same dose. It has sour citrus taste probably due to other ingrediants. Does Folic acid have a taste?
Interesting study:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8750052&dopt=Abstract (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8750052&dopt=Abstract)
PS - Liam wins first prize for sorting out the ginko anagram!
OK, I'm going back on the Korean Red Ginseng. I was taking the "Prince of Peace" brand vials with little straws. I'm going to look for a better delivery system now.
This is the study I was referring to that compared trazadone to red ginseng. Here is the comment that caught my eye: "However in the group receiving ginseng, changes in early detumescence... were different compared to the other groups. " IOW, the deflation part took longer to happen, and that was related to nocturnal erections, not stimulated ones.
Since that effect is what Trazadone does (delays the drainage that IS detumescence), it makes me wonder if red ginseng operates through the same mechanisms (alpha blockade).
Tim
I came across something that claims there is a cure for Peyronies Disease using traditional Chinese medicine:
http://www.highbeam.com/library/docFree.asp?DOCID=1G1:125834324
Has anyone tried this route?
Percival
Peyronie's disease, varicocele & male sterility, and increasing sperm motility with Chinese medicine.(Chinese Medicine Update)
Townsend Letter for Doctors and Patients; 12/1/2004; Flaws, Bob
Keywords: Chinese medicine, Chinese herbal medicine, Peyronie's disease, varicocele, male sterility, sperm motility
**********
Peyronie's disease
Peyronie's disease refers to fibrosis of the cavernous sheath of the penis leading to contracture of the investing fascia of the corpora of the penis resulting in deviated and painful erection. In Western medicine, the cause of this condition is unknown. It occurs in adult men and may prevent intromission. It is rarely seen in those under 20 years of age. It is a slow and gradually developing disease. If the fibrosis extends into the corpus cavernosum, it may compromise tumescence distally. Fortunately for some, resolution of this condition may occur spontaneously over a period of many months, and minor Peyronie's disease which does not cause sexual dysfunction does not typically warrant treatment by Western medicine. Such treatment primarily consists of surgical removal of the fibrosis and replacement with a path graft. Unfortunately, treatment results are unpredictable and surgery may result in further scarring and exaggeration of the condition. Local injections of verapamil or high-potency corticosteroids may also be effective. Orally administered corticosteroids are not. In some cases, a prosthesis may have to be inserted to assist potency. Since Western medicine's treatment of this condition is not entirely satisfactory, alternative treatments, and especially nonsurgical treatments, are desired by many sufferers of this frustrating and embarassing disease. Recently, Zhang Bao-xing and Zhang Hai published an article on the Chinese medical treatment of Peyronie's disease. Titled, "The Treatment of 30 Cases of Penile Sclerosis & Nodulation with Chu Jie Tang (Eliminate Nodulation Decoction)," this article appeared in Shan Xi Zhong Yi (Shanxi Chinese Medicine), #4, 2001, on page 43.
[ILLUSTRATION OMITTED]
Cohort description:
All 30 cases included in this study were seen as out-patients at a hospital attached to the Henan College of Chinese Medicine. Three of the men were between 20-30, six were 31-40, 12 were 41-50, and nine were 50-60 years old. Ten cases had had this condition for one year or less, 12 cases had had it 1-2 years, and eight cases had had it for three years or more. All the patients met the diagnostic criteria appearing on page 227 in Nan Xing Sheng Zhi Su Wai Ke (External Medicine for the Male Reproductive System) published by the People's Health & Hygiene Publishing Co. in Beijing in 1989. These criteria were the same as the Western medical description given above.
Treatment method:
In order to dispel dampness and eliminated phlegm, transform stasis and soften the hard, and rectify the qi and free the flow of the network vessels, the following medicinals were administered: Pericarpium Citri Reticulatae (Chen Pi), 12g, Rhizoma Pineliae Ternatae (Ban Xia), 10g, Sclerotium Poriae Cocos (Fu Ling), 12g, Rhizoma Curcumae Zedoariae (E Zhu), 15g, Rhizoma Sparganii (San Leng), 15g, Spica Prunellae Vulgaris (Xia Ku Cao), 20g, Semen Sinapis Albae (Bai Jie Zi), 15g, Bulbus Fritillariae Thunbergii (Zhe Bei Mu), 12g, processed Resina Olibani (Ru Xiang), 10g, processed Resina Myrrhae (Mo Yao), 10g, Fructus Meliae Toosendanis (Chuan Lian Zi), 12g, Radix Bupleuri (Chai Hu), 10g, Radix Achyranthis Bidentatae (Niu Xi), 12g, Rhizoma Atractylodis Macrocephalae (Bai Zhu), 10g, Fasciculus Vascularis Luffae Cylindricae (Si Gua Luo), 15g, and Herba Ranunculi Ternati (Mao Zhao Cao), 20g. (1) One ji of these medicinals was decocted in water and administered orally per day, with one month equaling one course of treatment and three continuous courses being given. During this time, patients were forbidden to eat acrid, peppery, sweet, and fatty foods. They were counseled to keep a smooth and easy affect and to keep their sexual activity suitable. No further explanation of "suitable" is given by the Chinese authors of this study. However, sexual activity was not prohibited during therapy.
Treatment outcomes:
Cure was defined as disappearance of sclerosis and nodulation, no curvature of the penis during erection, and no aching or pain. Marked effect was defined as partial softening and lessening of penile sclerosis and nodulation, improvement in any aching and pain, and curvature of the penis during erection. Based on these criteria, 23 cases were cured and seven got a marked effect. Thus the total amelioration rate was 100%.
Discussion:
According to Zhang and Zhang, this disease is associated with the three channels of the liver, spleen, and kidney. If the patient's emotions are unfulfilled, the liver may become depressed and the qi stagnant. Thus the movement of the blood loses its smooth and easy flow and there is qi stagnation and blood stasis in the yin organ. If sexual desire is without limit, this may damage and consume kidney essence, resulting in yin vacuity and the movement of the blood becoming slow and relaxed. This may also cause blood stasis in the yin organ. A predilection for eating fatty, sweet foods and drinking too much alcohol may cause detriment and damage to the spleen and stomach, brewing and engendering phlegm and dampness. If this phlegm and dampness pour downward, they may congeal and bind in the yin organ.
Based on these disease causes and mechanisms, Zhang and Zhang believe that the appropriate treatment principles for dealing with this condition are to dispel dampness and eliminate phlegm, rectify the qi and free the flow of the network vessels, and transform stasis and soften the hard. Within this formula, Chen Pi, Ban Xia, Fu Ling, Bai Jie Zi, Zhe Bei Mu, and Bai Zhu fortify the spleen, dispel dampness, and transform phlegm. San Leng, E Zhu, Xia Ku Cao, Mao Zhao Cao, Ru Xiang, and Mo Yao quicken the blood and transform stasis, soften the hard and scatter nodulation. rm Chuan Lian Zi, Chai Hu, and Si Gua Luo course the liver, rectify the qi, and free the flow of the network vessels, while Niu Xi guides the other medicinals in this formula to move downward to the reproductive organs. Because these medicinals and these disease mechanisms are in accord, the treatment effects were completely satisfactory.
Also found this from the new posted answers from Dr. Levine.
B. I first noticed my symptoms only about 3 months ago (painful erections, hard nodule under the skin when flaccid) and am currently in the "active" phase of the disease. Is there anything I should or should not be doing during this phase in order to minimize the eventual resulting curvature? It's only slightly noticeable (approx. 5-10%) and I'd like it to stay that way.
It's true that you are currently in the active phase. Contemporary natural history studies have suggested that during the "active" phase, 50% of patients will have worsening of their deformity, around 40% will stay the same and less than 10% will have spontaneous resolution of curvature. Therefore, you are at risk to have progression of your Peyronie's, but given that it is so slight at this time, it may not progress. Avoiding vigorous gymnastics during sexual activity would be beneficial as well as avoiding female on top/ "rodeo sex" where the pressures on the penis can be quite substantial and may further activate the scarring process. It is reasonable to continue sexual activity, but just be careful. For men who have mild deformity and no significant pain but are interested in doing something short of injection therapy or iontophoresis, I have recommended the combination of pentoxifylline 400 mg two times a day which is a generic prescription drug, and L-arginine 500 mg two times per day. It is reasonable to continue on this treatment for three months. This therapy is best prescribed by a urologist who will provide an initial evaluation and then will be able to track your progress over time.
It appears that we are on the right track with L Arginine to, I'm going to look into adding Pentox into my regimen assuming its not to expensive.
Here is what is on that concoction. I make no bones about it - I do not know what to make of Chinese traditional medicines theories of the body. I accept that I do not understand it or believe it, but that they also have thousands of years of trial and error in their medicinal therapies, and we would be fools to ignore that. Nevertheless, all the usual caveats apply. This was not blinded or controlled and there were no longterm outcomes. It has not been replicated for over 17 years at any other institution (that I could find).
Pericarpium Citri Reticulatae (Chen Pi), 12g, - Dried Tangerine Peel
Rhizoma Pineliae Ternatae (Ban Xia), 10g, - Pinellia tuber
Sclerotium Poriae Cocos (Fu Ling), 12g, - "Indian Bread"
Rhizoma Curcumae Zedoariae (E Zhu), 15g, - Zedoary
Rhizoma Sparganii (San Leng), 15g, - Common Burreed Rhizome
Spica Prunellae Vulgaris (Xia Ku Cao), 20g, - Common Selfheal Fruit-Spike ?
Semen Sinapis Albae (Bai Jie Zi), 15g, - White Mustard Seed
Bulbus Fritillariae Thunbergii (Zhe Bei Mu), 12g, - Thunberg Fritillary Bulb
processed Resina Olibani (Ru Xiang), 10g, - ? Olibanum (Frankincense?
processed Resina Myrrhae (Mo Yao), 10g, - ? Myrrh ?
Fructus Meliae Toosendanis (Chuan Lian Zi), 12g, - Szechwan Chinaberry Fruit
Radix Bupleuri (Chai Hu), 10g, - Chinese Thorowax Root
Radix Achyranthis Bidentatae (Niu Xi), 12g, - Twotoothed Achyranthes Root
Rhizoma Atractylodis Macrocephalae (Bai Zhu), 10g, - Atractylodes Rhizome
Fasciculus Vascularis Luffae Cylindricae (Si Gua Luo), 15g, - Retinervus Luffae Fructus
(Luffa?? - as in the things you scrub with!)
Herba Ranunculi Ternati (Mao Zhao Cao), 20g. - Poisonous Buttercup Herb
The reference "(1)" has an appended explanation that makes sense only of the last listed
ingredient:
1. This medicinal is sweet, acrid, and warm and enters the liver and lung channels. It treats
scrofula, subcutaneous nodulations, pulmonary tuberculosis, and malaria-like disease. When
taken internally as in decoction, its dose is 0.5-1 liang. It is classified as a heat-clearing
medicinal. This medicinal's common English name is Cat's Claw, and it is a species of buttercup.
In the US, it is available from both Mayway Corp. and Nuherbs Co.
::sigh:: so close yet so far...
Tim
Thanks for that break-down of the concoction. I too am very sceptical about such claims, but we should leave no stone unturned in our search. There may be a clue amongst that long recipe!
It is interesting to hear that the Chinese also suffer from Peyronies Disease - which, we are told is more common in men of North European descent.
Percival
ComeBackid,
From reading between the lines on your post with pentox and arginine and other information...the pentox and other hard drugs like potaba, these are suggested in the early phases, once the fibrosis is completed or scar form(later stages), what is the benefit of these drugs? They don't remove scar tissue....
I think we have to understand the drugs are prescribed for ones phase of the diesease...this person asked in that particular post that he was in the early phase(inflammatory), and wanted to limited the condition....from you post, you seem stable....
I choose not to take the drugs in the early phase(which I'm still in four months), do to the fact that the general attitude is, Well if you want to do something, then you could TRY this.....My urologist had been dealing with peyronies for twenty years and had tried the verapamil injections(told me it was a hassle for the results he saw), suggested, once again if I wanted to try something, do the potaba and topical verapamil, he said at least I wouldn't have to get the shots, which are painfull and not good results....
I feel for everyone of my brothers with this crap and I know we all are looking for hope...but before you take a hard drug like pentox, look at the phase of your condition and ask yourself, will this remove scar tissue? and if it does, will it replace the excising tissue(tunica) with elastic tissue? Taking a arginine supplement is like vit e, this is more of a holistic approach and won't do you more harm than good....I don't believe that a man with peyronies that had it for over a year went to see the good doctors that they would say pentox if you were stable.....
My thoughts on the needling technique in conjunction with VED, I know when I was in the Navy in 1972 we still did some of the butchering of meat, it finally got phase out for pre cut meat, but we still did some of the tenderizing of beef, we had this one machine that had hundreds on needles and we would punch the meat, the tough connective tissue would then become soft and was easy for the men to eat...tenderize it....there were tenderizer you could put on, but the mechanical method was superior to breaking it up...
if you do perforate a area, it will stretch easier, needling it.....the problem with are scar though is that there is a layer of nerves, blood vessels, tissue between the top layer and skin and tunica, so you have to go through this to get to the scar tissue...
My point on this verapamil injections along with a mechanical approach of VED is becoming the way with peyronies, but is it really two mechanical approaches that is working, the needling of the plaque along with the st recthings.....physical therapy!
Mick stated he didn't want to do anything with his VED so he could tell if it was the VED that made the difference...which I thank him for...because I would be happy with his results myself, and he found this in two months, but he did follow the Old Man and was consistence in the regime....no pills, or creams...
I read a article and I didn't save it in my favorites, but I'm sure some of the old timers on here have read it also, but the doctor broke up the plaque, sort of needle technique, I think he cut three stripes in it for it to expand and need get results for better function, but once again they addressed the dealing with nerves and blood vessels ect....same problems with the injections.....remember what is feels like when a dentist hits a nerve....why do you think some people say one shot isn't as bad as another..hit a nerve! OUCH!
Remember also, pentox was his second choice to Verapamil...he did say don't waste your money on topical....
They have this devise for people with scar tissue on there face, it looks like a roller with many little needles on it, they puntcure the scar and massage it smooth.....buy they don't have to worry about the nerves because it lays on the surface...
I know DR. HO's massage works, I have used it, it uses electrical impulse to make your muscles twitch, it is very powerful, I tried it on my penis, but the pads where to big, and I couldn't get it to work...
But it works with scar tissue on other parts of the body...
My point on this is that the IONH, is it the electric current that shows some results with some people? some say they use saline....same results as verapamil?
AA4500.....I'm not even going to go here:).....I will say, I won't buy this stock and leave it at that....
Everyone have a Bless Day! I'm going for a run......
Rico
Pentox serves to block the production and release of TGF beta-1. That in turn signals a huge cascade of events that culminate in placque formation - perhaps. It is clearly implicated in rat models, and in those models pentox prevents disease, and can partially ameliorate present disease.
It is important to remember that the body is not static. A scar is not a bunch of cells that never change - even bone is not like that. Rather, a placque is an active tissue, that often worsens - for many of us in repeated small incremental worsenings that we can see but are not so apparent. But aftera few years, you are worse.
The literature written by the scientists who have done the studies are quite clear. This should prevent fibrotic processes, and it should also promote healing of already fibrotic processes. To quote Gonzalez-Cadavid: "Some peyronie's disease plaques are biochemically dynamic and undergo turnover."
It is absolutely vital that we do not oversimplify this problem - it is neither emotionally or biochemically simple. Here are two figures that suggest pathways that are supported by the research literature:
*****************
Figure 1. Normal wound healing following trauma or microtrauma to the penis does not lead to scar formation or fibrosis. In a simplified view of a complex process, fibrin deposits and other factors attract macrophages and, via release and activation of cytokines (mainly transforming-growth-factor beta1) induce fibroblasts to differentiate into myofibroblasts. Both cell types actively synthesize collagen and other extracellular matrix components. Myofibroblasts also facilitate closing of the wound, before being degraded via apoptosis; fibrin is removed by fibrinolysis. In the Peyronie's disease plaque, inhibition of fibrinolysis by plasminogen activator inhibitor-1, release of transforming-growth-factor beta1, myofibroblast differentiation with reduced apoptosis, and accumulation of matrix metalloproteinase inhibitors (plasminogen activator inhibitor-1 and tissue inhibitors of matrix metalloproteinases) lead to excessive collagen deposition and disorganization (fibrosis) and abnormal healing (scar). Fibroblasts also contribute to collagen deposition. Arrows indicate stimulation or increase; bars indicate inhibition or decrease. MMPs, matrix metalloproteinases; PAI-1, plasminogen activator inhibitor 1; TGF-beta1, transforming-growth-factor beta1.
Figure 2. Peyronie's disease plaques result from dynamic interplay between profibrotic and antifibrotic factors in cells such as fibroblasts and myofibroblasts of the tunica albuginea . One of the antifibrotic mechanisms in the Peyronie's disease plaque is increased levels of nitric oxide and cyclic GMP resulting from sustained expression of inducible nitric oxide synthase. Fibrosis in smooth muscle of the corpora cavernosa and in penile arteries may be associated with aging and diabetes, contributing to corporal veno-occlusive dysfunction. Corporal fibrosis, like tunical fibrosis, seems to be counteracted by inducible nitric oxide synthase. Arrows indicate stimulation or increase; bars indicate inhibition or decrease. cGMP, cyclic GMP; iNOS, inducible nitric oxide synthase; MCP-1, monocyte chemoattractant protein 1; MMP, matrix metalloproteinase; nNOS, neuronal nitric oxide synthase; NO, nitric oxide; Peyronies Disease, Peyronie's disease; TGF-beta1, transforming-growth-factor beta1.
Tim,
We as we know have different conditions of this diesease. The "A" typical is a scar in the tunica, are more complex condition is where it also has a more invasion of the scarring process into the underlying vascular tissue..hence the elastic function of the entire tunica can be involved....this is a small percentage of peyronies cases...but also needs to be addressed.....
Location of plaque is also a consideration for each of us to take in consideration...
It is pr oven that nitric oxide will keep the plaque at bay and help in wound healing....
One can take ginseng, trazodone, Viagra, and many other supplements to get this effect...
The bottom line is that by increasing oxygen to the area you will stop fibrosis or curtail it and also promote wound healing...
I see you don't take arginine? But choose mace and ginseng....
arginine complex(ornithine) and glutamine complex is proven to heal tissue and provide oxygen to tissue....
If one has a underlying vascular tissue problem then this is the method I would use and also with a "A" typical problem along with a mechanical method(VED), and from my experience with scar tissue, the slow approach(OLD MAN) (Spivey) makes the most sense to me...
Before I took some medicine like potaba or pentox, I would take more arginine, but even more a more complex amino supplement that en chances wound recovery....I believe this is L-arginine hci, arginine alpha ketoglutarate, Ornithine alpha ketoglutarate, arginine ketoisokaproate, l-glutamine, l-glutamine alphan ketoglutarate N-acetyl L glutamine and l-taurine, along with ALC.....
these are more natural and your body will respond better to them, you will get great nox to your wound area....
The FDA cannot stop amino acids, because they are natural food supplements that are made to heal the body...no prescriptson needed, lots of research behind them also.....arginine in my opinion is the best thing one can take for peyronies as of now, and I believe you need to take a more complex one like I listed....glutamine combine is so important for wound healing and ornithine will help the arginine do what it needs to....
It is funny when I read the new on the market products for ED and the first and most prominent ingredient is arginine in a complex format as I listed....
This products are made in a lab also, think when you are taking some herb from overseas, what are you getting...maca, ginseng, who knows how the processing is....I will go with products from companies like Xyience myself, state of the art..... I'm buying tomorrow there nox extreme formula, which is arginine complex....I also love there nox3...I believe in glutamine for wound healing and soon as I take it with the arginine mix, and if my mind wandering like most men:), I get some strong wood!, opens blood vessels.....which curtails fibrosis....
Take care and God Bless....
Rico
Dr. Levine states that viagra has NO which can act as an anti fibrotic, does L Arginine contain this as well? Does Pentox contain the NO? Is this the secret ingredient to have the anti fibrotic effect in peyronies disease?
Comebackid,
This is what I'm saying, the nox is the ingredient, why not take arginine which is more natural.....I do believe you can enhance this if you read my last post by adding a more complex arginine along with the other aminos, please re read the post...
Doctors are like traffic cops, you have to write so many tickets to keep you job, cops write tickets, doctors write prescriptsons, you don't need a prescript on for arginine, so the add on is pentox....which is redundant...now once again, I always believe one should go to a doctor/urologist, and weigh out what he has to say, early conditions ect...but ask him and look him in the eye and say, would I get the same effects from arginine?? Most of these guys are honest if you seem like you know what you are talking about, mine wouldn't piss on my back and tell me it is raining, he does what I tell him, write me this and he does it....I use him for the prescriptsons, although the only one I wanted was for VED, I can get the arginine and alc ect...at GNC....Nitric Oxide is the same...period....I see people get on high blood pills, they now are a customer for life, don't sell the razor, give it away, sell the blades, it is a consumable product and you have a customer for life, this is a business, just look at there billing, state of the art...
ComeBackid I worry about you and all the pills ect you are taking at once, keep is more simple, pick one that give you NO and then stop....you also sound like you might have a vascular underlying problem and the complex I stated in my other post might address this....
I everyone to know that I'm not against doctors, but I don't believe they are going to come to our forum with open arms, Levine has his own plan, so does Lue, I read about Lue and his study with Pentox since 2002, and I'm not impress at all, take a double douse of arginine, oh that is right, no prescriptson, no prescriptson, no money...got to feed the beast, and the medical community is a huge beast with a large appetite, and part of this is because of our litigious society we live in. I would hate to be a doctor, your liability insurance drives you to be income producing machine to stay in business, this can alter your thinking....more drugs....or maybe I strike up a deal with a traction devise....kids need new shoes.....I called my urologist the over day, the nurse said, you know this call will be charge, I said, tell him it is Rico, you know what, no charge, why, because he was taking notes, not me....he fax me the same day my prescriptson for my VED and thank me for the arginine mix blend and alc advise he could pass on to his other clients....I'm sure there is a point when you have been putting people on potaba and verapamil for years and there is no results you are just looking for something to get these clients something....I wouldn't be surprise if there is a new drug that will come out and if you break it down it will be a amino complex....but like verapamil a 600% mark up....
Rico
Rico,
The understanding I get according to Tim is that Pentox is for any phase of peyronies, possibly stopping further development and loss of elasticity as well as breaking down an already existing plaque. So your saying that L Arginine and Pentox are the same thing exactly? How can this be one is a supplement and one you need a prescription for. I don't doubt that L Arginine has NO.
Right now I"m not really on many pills just ALC, trazodone and L Arginine, thats it, I don't take viagra.
I'm wondering if its safe to take
ALC
L Arginine
Pentox
trazodone or viagra or both
If L Arginine, Pentox, and viagra all contain NO how much do you really need? And does Pentox have other properties besides just NO that will help prevent progression and help break down existing plaque?
Rico,
You do raise a good point on the fact that doctors write tickets. I used to see a doctor for acne went there for years and tried tons of medicines, many office visits. Then when accutane came out I took it and my acne went away totally, guess what never had to go back to see the dermatologist, he just lost a customer.
ComeBackid
ComeBackid,
I didn't say that pentox was the same as arginine, arginine has nox which seems to curtail fibrosis....I have read that you should talk to your doctor if you are on ED meds and are going to supplement with arginine....I think you should talk to your doctor, especially if you have medical problems before you start any program. I go in for a check up every two years....prostate check, blood pressure ect....
My thoughts are not to take several nox products at once, maca, ginseng, arginine, trasdone ect...Pick one....I choose the arginine mix, this would be my first choice...I'm not going to list the amino acids again, they are in my other post...I feel this is the best out there for wound healing and Nitric Oxide.....
I don't know how someone could function or heal on so many different drugs....at two months my curve was getting worse, so was hour glass, I threw away the verapamil, and hit the epsom salt baths, went on a anti inflammatory diet and started taking the arginine mix, I went stable in two weeks, I have went down now 5 degrees in my curve and penis looks healthy....they wanted me to go on potaba...no way!! How can one heal if he has stomach problems and is in the bathroom all day...No thanks..
Remember Levine said that if you don't want to do IONO, then I would do Pentox, if you wanted to try something, does that sound positive to you? IONO is his first choice, what do you think of that, you just did it, so I ask you, why would you consider his second choice?
Lue puts one guy on it, remember this person is very young, living at home, probally eighteen, they believe that at this age, these drugs work better in the early stages....plus maybe he couldn't travel ect....my point is this post comes on and everyone starts screaming Pentox! It looks promising......Is it? The research on it is full of holes.....I would take it if I thought it had a 30% chance of working....
I'm not trying to influence anyones decision on his treatment, I just wouldn't feel if I didn't answer in a honest way that I feel I could post my comments....this forum is a great place to gather information, just like the internet, but remember believe very little you read and half what you see:).....and these blind studies ect....they don't talk about there diet ect...remember most diesease comes from inflammation, stop this first, this can be done with diet and alc and aginine and epsom salt baths and plenty of water....next heal the wound and remold it.....the blood is also the carrier of most disease.oxygen, Nitric oxide, circulation cleans the blood...once again arginine is a amino acid that your body makes from food source, or you can supplement with a high grade designer one, state of the art with the research behind it....once again, read my other post....
Rico
Just for clarification. There is no N O (nitric oxide) in any of these. They work in different ways to increase N O. L-arginine is a precursor of N O. Viagra is a PDE5 inhibitor.
http://www.wiley.com/legacy/college/boyer/0470003790/cutting_edge/viagra/viagra.htm
Pentoxifylline is also a PDE inhibitor.
Search this site. Tim had a great explanation of these somewhere.
Liam
I was just about to jump in and make this very same point. NOx is only generated AS NEEDED within the body and is extremely transient. In other words, it is used up as fast as it is generated. PDE-5 inhibits this process. Viagra, Levitra, Cialis, Horny Goat Weed, Korean Red Ginseng (Correction by George as of 10-06-06 -> While Korean Red Ginseng has been shown to have an apparent positive effect on NOS, it is not a known PDE-5 inhibitor.) , and a host of other substances inhibit PDE-5 which then facilitates NOx production on an as needed basis. Various forms of Arginine simply provide additional available fuel for that process in the form of serum nitrogen, with some forms claiming better delivery and NOx formation stimulation than others.
The other factor involved, inflammation, is ALSO mediated by a PDE, PDE-4. I am absolutely convinced that the root of the whole scar tissue problem is centered on the malfunctioning of these two substances. Tim previously mentioned PAI-1 as being part of the whole mix. I am convinced that he is right on the money on that one as well. And to that I would add that anyone with salt sensitive hypertension is going to have a PAI-1 problem since salt sensitive hypertension is caused by excessive aldosterone which inhibits the breakdown of PAI-1, thus adding to the problem of fibrosis. I suffer from that problem and that is the number one reason I am taking some Neprinol, since I am hopeful that Neprinol is capable of eliminating some of that PAI-1 overload. I am also hopeful that my doctor will grant my request for Inspra, a drug which inhibits aldosterone, so that I can get off of the Neprinol and not have to worry about the PAI-1 situation.
Liam,
Yes the brand or mix I listed will "boost" nitric oxide, get oxygen to your muscles, vacillate your veins. I was talking more about the effect, which I believe is what we are looking for....I read a article that said they don't even know how pentox works?
Rico....
I have really been impressed on what I have been reading on Korean Red Ginseng and have now cut my intake of Horny Goat Weed in half and adding Korean Red Ginseng. I take both of these along with maca and Arginine AKG (whatever that is). This combination seems to be working better than the Horny Goat Weed alone, at least on my blood pressure which is easier to measure than my peyronies. What is also encouraging is that the old scar on my finger is getting noticibly softer which reinforces my impression that I am heading in the right direction.
I am also impressed by what I have heard about Thai Mangosteen in terms of its ability to wipe out inflammation and lower blood pressure dramatically. It is also known for dramatically reducing levels of NOx. But what I am wondering is if it is actually reducing free NOx by increasing tissue uptake of NOx. That could be very interesting. So I am going to be looking closer at it. I have actually purchased some, will give it a shot and report back on any positive or negative effect on the peyronies.
My best to all of you!
George,
I do think there a different degrees of scars.....and arginine does give more short term boost of NO, this is why you take it before a workout, and Viagra, I think will last for four hours....I break up my arginine or mix I take over a couple times a day...
For myself and most cases from what I have read on peyronies is that the "A" typical condition is a scar....not some rare cray diesease gone wild....know in some cases when the whole tunica is affected, which is rare, then maybe as Levine says, a different form of peyronies...we all get thrown in the same boat...
As far as PDE, PDE-4, PAI-1, I respect your thoughts, but I think you are over thinking this "A" typical condition of peyronies...it is a scar, your body when it has a injury repairs it this way, if it was anywhere but on the tunica which needs to keep it elasticity this wouldn't even be a topic....it isn't your body going hay wired....it is just some scar tissue in a bad spot....a Natural way for the body to heal a wound, once again and as they say in retail....location is everything! Put this 3cm scar on your ass and your wouldn't even know it is there.....
Rico
Rico, I certainly agree on the exercise part. I make it a point to take a 30 minute hike within 30 to 90 minutes after taking the Arginine and PDE inhibitors. Works out good that way for me. Twice a day. In fact I need to get started on my evening one now! And thanks for all the input. There is a lot to learn from body building and atheletics in terms of maintaining a healthy bod! - George
George,
The AKG is Arginine Alpha Ketoglutarate, the alpha Ketoglutarate(akg), has been use for trauma and burn victimins, it is good also for wound healing, I use it in my mix, I believe you are getting your nitric oxide boost from this, I would add glutamine and ornithine to your supplements and back off the other supplements, give it a try for one week....the glutamine should be a complex like the arginine....
Rico
Rico,
You have said somethings which I find fairly objectionable, and I must respond.
>>Doctors are like traffic cops, you have to write so many tickets to keep you job, cops write tickets, doctors write prescriptsons, you don't need a prescript on for arginine, so the add on is pentox....which is redundant...<<
First of all, you are certainly entitled to your opinion. However, as a physician, I find this statement outrageous. I myself routinely use (and often recommend) herbal products and a "natural" approach (an example might be teaching an asthmatic child relaxation techniques and teaching them the value of reducing dust in the home). I do not get paid to do that. I would add that, as an academic physician, I am on a salary, and the average reimbursement I get for an office visit is $28-32 dollars. I see about 10-12 patients only during a day, because my practice is limited to the sickest children in a tertiary referral center. I take between 15 and 30 minutes per patient on a return, and about 1 hour for a new patient. You do the math - I am not exactly rolling in the dough. I could make more by going into private practice and seeing more patients, but that would not suit me.
Needless to say (or perhaps I do need to say it), I do not get reimbursed by anyone for prescribing one drug or another. Like many doctors, I am often unaware of the costs of what I prescribe - I am not proud of that. I do not make money from prescribing medications.
But the fact is, I know phsyiology, and that understanding of phsyiology drives my choices in prescribing. I am an "early utilizer" of new meds, because I read the literature and keep up.
I would add that pentox and arginine to NOT work through the same mechanism, so the combination is not "redundant".
Now, you have stated more than once that Pentox is not very useful. But I know of no reaon for you to say that. It is true that it is very new, and has not been used much yet - but it has some of the best science behind it of any of the many things we think of using.
You have stated that it will not work on old scars. There is no reason to believe that statement is true, for scars are dynamic, and the turnover is related to TGF beta - and pentox blocks that effect!
You said: >>Lue puts one guy on it, remember this person is very young, living at home, probally eighteen, they believe that at this age, these drugs work better in the early stages....plus maybe he couldn't travel ect....my point is this post comes on and everyone starts screaming Pentox! It looks promising......Is it? The research on it is full of holes.....I would take it if I thought it had a 30% chance of working....<<
I have no idea what you are talking about. In February of this year, Tom Lue reported on a 51 year old man with a penile mass of 8 months duration. His lesion had an hourglass deformity, and a thirty degree bend and calcifications. After 6 months of therapy, his bend was 10 degrees, the hourglass deformity remained, and his erections were better and painless, and after another year of therapy, his calcification was gone! He took it for a total of two years, and has chosen to remain on it.
You stated: >>this forum is a great place to gather information, just like the internet, but remember believe very little you read and half what you see:).....and these blind studies ect....they don't talk about there diet ect..<<
Well, that too is incorrect. First of all, although I agree with what you say about not trusting everything that you read on the internet, I would also add that actually reading the reports might be of value. For instance, Dr. Lue said in this case report: "Our patient used sildenafil before recovery of erectile function, and one might well question whether this played any role in either the pathogenesis or resolution of his disease process. Pentoxifylline has been shown to be a nonspecific PDE inhibitor, and PDE inhibitors have been shown to play a role in preventing fibrosis."
IOW, he took a history and DID note what the patient was taking - inthis case viagra, and he noticed that might also play a role in his improvement. It is noteworthy, IMO, that Levine and others often now recommend (Levine reported two cases) taking a combination of arginine, viagra and pentox.
I am going to assume that when they advised taking arginine, that they did it because they felt it was in the best interest of the patient, and that when they recommended taking viagra, they did so for the same reason, and that whether or not it is over the counter or prescription did not affect their advice!
You said: >>I read a article that said they don't even know how pentox works? <<
Well, biochemical mechanisms can be hard to glean sometimes - much of physiology remains a "black box" - the goings on inside of which we simply do not understand.
Here is what Lue said about it: "The mechanism is not fully known; pentoxifylline blocks the transforming growth factor (TGF)-beta1-mediated pathway of inflammation, prevents deposition of collagen type I, and acts as a nonspecific PHOSPHODIESTERASE (PDE) INHIBITOR. Valente et al. have demonstrated that both sildenafil and pentoxifylline reduce the plaque size in tunical fibrosis induced by injection of TGF-beta 1.16 Encouraged by pentoxifylline's observed suppression of collagen production in Peyronie's cells in tissue culture, as well as its efficacy in other human fibrotic disorders, we have been offering patients treatment with pentoxifylline for Peyronie's disease since 2002."
In other words, a great deal is known about Pentox, and how it works. It compliments arginine - it does not work the same way as arginine. It compliments viagra, but again, it works through shared AND different mechanisms. Ther reason that arginine and viagra and pentox are all used together by the Chicago group is because of this complimentary activity.
I am glad that your disease has abated a bit. I am doing most of the same things that you are doing myself (meditation, relaxation, exercise, prayer, herbal and other supplements, VED and hot baths) (usually minus the epsom salts). But having something that MIGHT work for you, should not lead you to start trashing a medicine that has potential to help many of us (including you, I might add). In fact, I will add that. As someone who has a new lesion (about 10% spontaneously resolve, but most do not), you are at a place in this disease where you might benefit MOST from something like Pentox.
Rico - you have a good heart and boundless energy. But I fear that your energy is often quite misdirected, and off-target. For all the very helpful information that you share about what you know, it is what you post about what you do NOT know that I find so puzzling. I get it that you do not "believe" in using drugs - but I think it is a disservice to trash the very notion of using Pentox, using completely false "information" and without an understanding of how the medicine works.
Tim
Tim, so good to hear the great news about Pentoxifylline. Also thanks for sharing a bit of the science behind it. I am profoundly interested in anything related to blocking inflammation and contributing to oxgygenation. I suspect that oxygenation and NOx stimulation is one of the huge benefits of exercise and one of the huge curses of being a couch potato.
I can understand why Rico might find the info posted on the internet confusing. I don't know how many times I have read on a reputable medical site something to the effect of "knowbody really knows" how this or that works, only to find another site fairly comprehensively describing the process. I have come to the conclusion that part of the problem is that some sites are dated and in other cases highly trustworthy medical professionals are simply unable to keep up with the current flow of new information. Also, for some people "nobody knows how it works" means "knowbody knows the complete process" and to another person the same thing mean "knowbody knows anything about it". There are just so many studies and so many interpretations, not to mention the sacred cow concepts that prevent otherwise intelligent and scrupulous professionals from making unbiased observations.
Of course another beef we all share is the outrageous cost of prescription drugs. On the other hand, so many of the newest drugs are so far superior to there predecessors, they have the potential to extend an untold number of lives. And while it is true that the drug industry is driven by money and greed, I really don't see the supplement industry as being an example of selflessness and charity. I commend you for not accepting gratuities from the drug companies, a lot of docs do these days, although I am not sure of how much it really effects their prescription choices. I rather suspect it has more effect on further inflating already inflated drug prices. I understand that it is a matter of record that pharmacuetical companies spend more money on physician perks than they do on research. >:(
I for one, am delighted with the Internet and all of the information it puts at ones fingertips even if it does require hours of sifting to sort out the weat from the chaff (99%+). And I am thankful for dedicated professionals like yourself who take the time to provide informative posts and relevant references that benefit not only us current readers, but who knows how many future readers who will be able to pull them out of the archives.
Hmmm. If doctors are so overpaid, I wonder why so many areas have such a shortage of doctors these days and why so many doctors are retiring earlier or changing careers. Hmmm. I just wonder about that.
Tim,
I'm sorry for that statement, It wasn't meant to cause hate or discontent with anyone, and I know that there are Doctors like yourself who are more concern about there patience base than there tee time...
My thoughts on Pentox from Lue's article about the 51 year old man are, the person had peyronies for 3 months, took pentox for six months and curve was reduced but the hour glass stayed the same....after two years he was still stable and ultrasound still showed plaque in one area but he could get erections if he use erectogenic agents.....that isn't what I would call anything to write home about....then they said that they had a 16 person group using pentox starting in 2002 and the study will be out, four years.....I'm just not getting a warm and fuzzy....sorry, this is my gut feeling on pentox....my Urologist said potaba....anti fibro....
My feelings do come from reading results, I read that these drugs are not going to give you size back and hour glass to go away.....
Levine said it is his second choice, first is IONO Verapamil.....I know my plaque is new and maybe IONO could help reduce it? But the lost of elasticty will still be there......do I think the IONO is driving the verapamil into the plaque? Maybe and like I said, if you haven't lost size and girth and just need to straighten the pipe a little, maybe this will be a good choice, we all have to take a step to the left and adjust for are needs and I guess this is the point I try to make in my own way also...
Black and White is easy in life, but when you have Grey sometimes it is hard to see the light, peyronies is a simple symtpom that is over thought sometimes in my opinion, like I said before to George if it was a 3cm scar on your ass you wouldn't think about it, it is all about location and this one scar got the End Cap in the strip center and it is to be recond with, like a dug in tick...
I do believe there is a couple forms of this peyronies and I address the more "A" typical...."The Needs Of the Many are More than the Few"
But I know all the brothers who have a more of a attack on the total tunica need to be address also......
If someone wants to take pentox, arginine, erectogenic agents, potaba, IONO, tradazone and all the other supplements from horny goat weed to gingseng, then more power to you...it is still America last the last time I checked:)......
Tim I think your are good guy and are a huge asset to this forum, I'm a bottom line guy...if I don't like the numbers, then I'm not buying, the theary doesn't hole up as much as results, the 51 year old man might of been happy with his results....I hope I'm wrong on pentox and it works!
I'm not going to take it because it nothing for his hour glass and he stilled had plaque...had to take erectogenic agents to get hard.....the bottom line once again wasn't what I felt worth the drug taking....
I think you said some of this anti fibro are a little late to the party, or it is like shutting the barn door after the cows are out, this is what I believe also, I have the scar, four months, it is there, when or if it goes away or shrinks, there is the problem for me to get the elasticty back, now once again for some poor soul it might mean for him to enjoy sex to just get a 10 or 15 degree reduction......and based off the information on pentox he might choose this....
I think on a positive note, that having a loose cannon like me balances the forum, and I want to say again I don't think you are a man that just writes scripts ect....I can tell you have passion and we are all glad to have you on this forum.......OH, by the way, was there anything you liked in my post:)! LOL!!
Rico
What, if any is the difference between L-arginine and Tri-arginine? The Tri is what is in VASO from GNC. Wow a short post! :o
That APDA question from the "ask the doc" section (posted here with Levine's answer recommending Pentox & Arginine) was one I sent in about 1 1/2 months ago. The one about stress was also mine.
But as has been the case as I've talked to my GP and Uro... I already knew what they were going to say. Thanks to this board, I'm more up to date on treatments than my docs have been.
My problem has been finding a doc to prescribe Pentox for me. But I understand Rico's point of view completely. He and I both read the Pentox study. I read it and think, "Pentox reduces the curve, and since that's my only symptom, it sounds perfect for me!" Rico reads it, and thinks, "It may reduce curve, but what about length and girth? No thanks, this sounds shaky as a Peyronies Disease treatment."
Depending on the condition of each person's Peyronie's disease, Pentox may not be the perfect treatment. Like most treatments, what works for some doesn't work for others. I'm certainly wanting to try it (if only I can find a Urologist who's as up-to-date on treatments as the people on this forum are).
I'm already on the aminos (L-Arg and ALC) and Propolis, and just finished my first bottle of Korean Ginseng pills. I can personally attest to Korean Ginseng's effectiveness on erections and just overall "sexual readiness". It doesn't blow me away, but I notice a distinct difference with it.
However, seeing how I've still got some mild erection-pain I think I'll stay away off it (KG) for now, minimize any inflammation those healthy erections may cause. What do you think - is this a rational thing to do, or should I just go with maximizing bloodflow, regardless of inflammation?
Hawk,
I agree with you. I do see my own faults and sometimes just write with my heart and hit send.....this is my first forum and one does need to learn to post in a educated format for we all can benefit.....I'm coachable:)!....
I hope this note finds you in good spirits...Have a Bless Day!
Rico
This post is in response to my post above which is out of place because I reposted it - Hawk
Quote from: Rico on August 28, 2006, 12:17:46 AM
I'm sorry for that statement, It wasn't meant to cause hate or discontent with anyone, and I know that there are Doctors like yourself who are more concern about there patience base than there tee time...
I think on a positive note, that having a loose cannon like me balances the forum,
Rico
Rico,
I did not read Tim's response as any slight degree of hate or discontent and I am sure you meant that tongue in cheek. I know Tim cares about you as an individual and your concerns. He is passionate about getting accurate facts out to Peyronies Disease sufferers instead of just impressions people may get after a casual glance at an Internet page.
I think unless we have in-depth knowledge as an expert on a specific topic, we need to use many more qualifiers when we post and not make statements that seem to be authoritative. I am going to try to get a point across that we can all benefit from, myself included.
Instead of making absolute statements like
QuoteDoctors are like traffic cops, you have to write so many tickets to keep you job, cops write tickets, doctors write prescriptions, you don't need a prescript on for arginine, so the add on is pentox....which is redundant...
what if we would say something a bit more like:
I often wonder if Doctors are like traffic cops,
do they have to write so many tickets to keep you job, cops write tickets, doctors write prescriptions, you don't need a prescript on for arginine, so the add on is pentox....
in some ways I think that the two are redundant...
I think you can see that one sounds like a man sharing ideas not speaking with authority after reading some pages on the internet. It implies that you are less than certain about what you are saying and that you invite clarification. Members can then show you another point of view without sounding like they are shooting you down. In the revised example the writer did not say doctors have to write scripts, they said they often wonder. It moves what you said from being a totally false statement (as Tim pointed out) to being a legitimate concern you have. One that others could have discussed with you without first having to shoot your statement down by proving it to be false.
Here are a few of many qualifying phrases: I think, I wonder, some, many, most, often, sometimes, I ask myself, it seems, it appears, It seems to appear that some (this is even more qualifying since it combines 3 qualifiers)
There are many more phrases that soften a statement in a way that we do not appear to be declaring something with absolute certainty. We also have the option of
asking if something is true rather that authoritatively stating a point in a public post. It is interesting that often those that are the most informed on a topic are the most willing to admit when they are in an area of uncertainty. Tim with many years of medical school, more years of medical practice, and decades of personal Peyronies Disease research often qualifies his statements, while those of us that may be far less informed often phrase our posts so it sounds like we are speaking with certainty.
Not only does qualifying our statements reflect better on us and contribute to conversation, it takes the newly diagnosed into consideration and prevents us from being responsible for giving false information to a brother searching for help. Something I know you would never want to do. (No qualifiers needed).
QuoteI think on a positive note, that having a loose cannon like me balances the forum
Rico, a lose cannon is an expression originating from a cannon out of control that wildly fires accidently injuring fellow troops. No one benefits from such and I am glad that you are not really a loose cannon. It is also never an asset to just boldly throw out misinformation with absolute termenology. That must me reserved for when we are absolutly certain that we are correct. Misinformation stated as fact can result in real harm. Throwing our new ideas with qualifying phrases is an entirely different matter.
PS: Another frequent misconception - I was a cop for 5 years and I never had a real or implied quota on writing tickets. I do
think that
some cops
may have such quotas. ;)
Thanks for the energy my friend
Quote from: Rico on August 28, 2006, 11:05:49 AM
Hawk,
I agree with you. I do see my own faults and sometimes just write with my heart and hit send.....this is my first forum and one does need to learn to post in a educated format for we all can benefit.....I'm coachable:)!....
You are a good man Rico, and a welcome asset because you are willing to learn. We all learn from each other here.
Myrddin,
When I got my peyronies and read on it for several months, I felt that it was a phase condition..and as I see it goes into the inflammation stage in the beginning as the scar is molding....the new tissue as I see fills in and then with scar tissue will spread out over the area, so the 1cm scar can turn out to be 1.5cm...this formation as I see is why the outcome of your condition exist....e.g. a bilateral scar will cause a hour glass, a deeper dead center with cause a upward bend, smaller the scar, smaller the bend, a scar on the side, a sideway curve away from the scar....I never had pain myself, my scar is on the septum, I believe this area is more fibrosis, I believe that the more you go to the glands(end of shaft), there are more nerves in this area and that is why your more sensitive there also....I believe scar tissue will Matt it self over the area, once again not just filling in the tear, and this phase is part of the inflammation phase in my opinion....if one can reduce the inflammation then the swelling in my opinion will put less pressure on the nerve ending and stop the pain, I feel myself that once the body signals the inflammation is at bay, the scar will be signal to start a stable state.....to me the inflammation is the trigger which the body keeps protecting it self, once again in my opinion if you don't stop this inflammation the body will keep producing scar tissue....
I took the approach of not worrying about the curve or hour glass....this was going to be my second phase of correction to my problem.....I went after the inflammation....I had progress to no curve just hour glass and was going from 0 to 2O degrees...it seem to be going about 5 degrees per week and the hinge and hour glass and loss of size was progressing....
The first thing I did was make a appointment with my dentist, had a cleaning and gums cleaned....I had been told before that inflammation in your gums can carry through your body....
Then I started taking hot epsom salt baths everyday for 30-45 minutes...
I went out and search for a diet that was for anti inflammation....
I started a good arginine mix with glutamine complex the arginine is a complex also...
epsom salts suppose to bring the toxins out of your body, some claim the ones that cause inflammation, so one needs to flush your system with plenty of water...I drank a half gallon of distilled water a day...
I think that it your body may be like a switch, say if it gets flipped one way, do to a injury you have to flip it in the other direction....
In my experience with a injury, if I just take the wait and see approach, which in some cases is the formula with peyronies, you body will adjust and the inflammation will subside on it's own this 6 to 8 month phase...
My thought was why not shut it down as soon as possible and go to the stable stage, I felt I would have less scar formation and this is why I took this approach, my curve reduce by 5 degrees now and I have stronger erections and less hour glass....my loss of length is about the same...but over all look and feel of unit is better....
Now this is only in my opinion, but I feel if one can stop the inflammation once again you will stop producing the scar tissue, your body flips the switch....now maybe taking pentox or a combination of other drugs will do the same thing, and it is easier to take the medicine than to make a life style change...you really have to take the bull by the horns sort to speak(maybe I should say by the horn:)).
I'm taking serapeptase, not because I feel it can remove my plaque/scar tissue, but because I feel it can reduce inflammation and I don't want to take a lot of nasid.....
I would take omega three, several times a day....msm and vit e...
My thoughts on pain, if it hurts, don't do it....now we all have levels of pain, what some people would think would be pain, to me it wouldn't be....but if you keep telling your body there is a injury there, In my opinion the body will keep the switch on to produce more scar tissue, flip the switch.....I have a list of foods, which work against inflammation, for example pears and apples....
Sometimes one has to look in the mirror and be honest with hisself, I have a friend who was border line high blood pressue, the doctor told him that he would have to take medicine if he didn't change his life style, he would be on them for the rest of his life if he started, he choose the medicine, he didn't want to make the adjustment, he is happy with that approach and at the end of the day this is what is important...
God Bless...
Rico
Regarding painful erections. Pain sseems to be a limited problem - it occurs but usually ends on it's own. I can reproduce some of the pain by using a VED, and the worst pain I have had is a dull ache after intercourse. It is hard to know what to say about inducing erections with anything.
Most of us believe - without much evidence that it is "true" - that getting erections helps prevent the progression of Peyronies Disease, expecially the curvature. I can personally attest to discovering that a period of abstinence of over a month (and largely "erection-less too) was accompanied by worsening. - cause and effect? Not sure.
If a "hard" erection stretches you to your limits and causes pain, one option would be to try to get semi-hard erections, or to use a VED and pump to a point less than the pain threshhold. For me, when I use the VED, I find that gradually working up to a higher pressure keeps me from feeling pain (as does a hot soak first).
I have semi-concluded my little experiment on myself. I find that horny goat weed and red ginseng in combnination lead to more and harder nocturnal erections. The use of "triple ginseng" (at least the brand I tried) did not work as well as the purer red ginseng (Panax ginseng). Both alone had good effect on me; combined they worked better. I have added an occasional 10 mg cialis when or if I feel a sensation of worsening (non-scientific, but I know my own body and Peyronies Disease after 30 years of it).
Tim
Tim,
I was wondering why you aren't taking arginine complex and gluamine complex.....I listed the four arginine that are in the complex and three gluamine also in my post, xyience research seems to be solid and the results are there....also now the doctors seem to be also going with arginine....is because you don't want to mix them Cialis?
Rico
argh - I posted a long response and it was gobbled up..
Oh well, the short answer is I do take arginine.
Tim
B. I first noticed my symptoms only about 3 months ago (painful erections, hard nodule under the skin when flaccid) and am currently in the "active" phase of the disease. Is there anything I should or should not be doing during this phase in order to minimize the eventual resulting curvature? It's only slightly noticeable (approx. 5-10%) and I'd like it to stay that way.
It's true that you are currently in the active phase. Contemporary natural history studies have suggested that during the "active" phase, 50% of patients will have worsening of their deformity, around 40% will stay the same and less than 10% will have spontaneous resolution of curvature. Therefore, you are at risk to have progression of your Peyronie's, but given that it is so slight at this time, it may not progress. Avoiding vigorous gymnastics during sexual activity would be beneficial as well as avoiding female on top/ "rodeo sex" where the pressures on the penis can be quite substantial and may further activate the scarring process. It is reasonable to continue sexual activity, but just be careful. For men who have mild deformity and no significant pain but are interested in doing something short of injection therapy or iontophoresis, I have recommended the combination of pentoxifylline 400 mg two times a day which is a generic prescription drug, and L-arginine 500 mg two times per day. It is reasonable to continue on this treatment for three months. This therapy is best prescribed by a urologist who will provide an initial evaluation and then will be able to track your progress over time.
Hmm interesting on Dr. Levine's thoughts here, I was already taking 1000mg of L Arginine twice a day, and I know many people are taking even more than I am per day, but it seems that Dr. Levine recomends just 500mg twice daily. Also the pentox as we can see of 400mg twice daily.
Thoughts people?
I think we can all agree most of the supplements people are taking on this forum are rather safe. I did a little research on Pentox since I'm considering taking the drug. But when I find studies like the following listing so many side effects it makes me wonder if I should really take it and just how safe is the drug? Will it leave me with moe problems than i started with? Will it really do anything to stop peyronies disease progression?
http://www.rxlist.com/cgi/generic/pentox_ad.htm
ComeBackid,
I am impressed, I have seldom seen a drug and even many supplements that reported less side effects than Pentox according to that link. Notice how many of the placebo group dropped out because of side effects.
I did not see a lot there that could "leave you" with more problems than Peyronies Disease.
I agree with Hawk on this one ComeBackid. Especially concerning the controlled release tablets. It just doesn't get much better than that. This really looks like a very safe drug to me. I would suggest with any drug or supplement that you not concentrate on the number or severity of possible side-effects, but rather on the actual rate of their occurance. If you take it under the guidance of a good physician, I don't think you are likely to have a problem. And to put things into perspective, remember, there are times when people die from taking aspirin or tylenol. Tylenol has been known to poison peoples livers, but your chances of having that happen to you if you use judgement is, well lets just say you would have a far better chance of winning the lottery. EVERYTHING can have side-effects, even food. And many common supplements have as many side effects as drugs like Pentox, and some are far worse. Personally, I would be more concerned about taking Trazodone than Pentox, but that is just me. - George
I have been on the Pentox for a couple of weeks and have had no side effects. I noted I started Nitrix (l-arginine). All the stomach problems have gone. It is much easier to tolerate (2000 mg 3X/day)
The goal of any therapy is not to get it perfectly right (that would be great) but to do something that helps, and to PAY ATTENTION to find out if is harming you. Sometimes docs put folks on a drug and never look back - but the key is to reassess continually.
If a drug causes a symptom, then you have to decide if it is worth staying on. The key though, is to figure out what matters most. I'd give up what is left of my hair and take some vomiting to get rid of leukemia (I think most of us would). I am not sure I'd do it for Peyronies Disease. I am really sure I would NOT tolerate that for a headache.
Tim
Can trazodone be taken with the L Arginine, and Pentox? Or along with the viagra as well? Does anyone know how much viagra is called for in the protocol?
Pentox is a interesting drug, along with trandzone and the other drugs...venuous insufficiency, vascular improvement, improves circulation, really addressing the circulatory problems a person can have....Pentox is used mainly for people with problems with circulation to there extremities, hands, feet.....
One can look at a Nurtaceutical approach and there are studies and also you will find that today in the main stay environment(doctors offices), that they are also carrying these products....companies are producing them in pharmaceutical grade....
OPC(Oligomeric Proanthocyanidinnutre) Pycnogenols, the health benefits are well documented on these and the health benefits of vascular health, improved circulation and there anti inflammatory properties....
The benefits of OPC/Pycnogenols are once again documented and if you do some research on them and put them up to the alternative drugs, I think you might be surprise on there benifits .....being that they come from grape seeds/french marine park bark/bilberry they aren't toxic and liver and kidney damage are not a concern....
Once again ask your Doctor about these products, I have seen them in several clinics.....if you think of the health in the Mediterranean diet, what wine can do for you, one tablet of OPC is like drinking four glasses of wine without the alcohol....I suggest once again buying pharmaceutical grade and doing the loading with the product and then the regular dose program...
I just threw this out there if someone is interested in a different approach
That may have the same results.....
Best regards,
Rico
Most clinics do not mix trazadone and viagra because of the risk of priapism. It has been rarely reported as a complication of using trazadone, and many clinicians think that the combination imight make that risk higher. I do not know, though, how founded in reality that is.
Remember that trazadone was used as a treatment for ED. With only a 60% success rate, it disappeared completely as a tool for that (or for depression) after the arrival of viagra. I think it is a measure of the success of viagra that no one knew about trazadone like everyone knows about viagra (marketing combined with actual efficacy).
However, I do not know if trazadone used in small amounts (ie 25 mg) is a risk in combination with viagra. If I were starting regular viagra as part of an antiinflammatory regimen, I would stop it while starting up, to fairly assess the actions of viagra. Then, if one felt it was needed, they could cautiously start it back up (perhaps using even a smaller dose).
I have read about people using anywhere from 25 to 100 mg of viagra in combination with pentox -I am not sure what the "right" dose is. However, given the side effects, I would not want to take 100 mg daily. I'd like to find out (and shall soon try to do so) if cialis can work the same way well enough to be used instead (fewer side effects for me).
Tim
Tim, you might also want to check out Revatio. Same as Viagra, just a smaller amount. As for Cialis, I don't think it has as much effect on PDE-4 (inflammation), but it is much longer lasting.
ffmedic and rico are really onto something with pycnogenol. It is a patented supplement with plenty of research behind it:
Pycnogenol((R)) protects against Ionizing radiation as shown in the intestinal mucosa of rats exposed to X-rays.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16752373&query_hl=1&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16752373&query_hl=1&itool=pubmed_docsum)
Comparison of Pycnogenol and Daflon in treating chronic venous insufficiency: a prospective, controlled study.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16708123&query_hl=1&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16708123&query_hl=1&itool=pubmed_docsum)
Inhibition of COX-1 and COX-2 activity by plasma of human volunteers after ingestion of French maritime pine bark extract (Pycnogenol).
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16330178&query_hl=1&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16330178&query_hl=1&itool=pubmed_docsum)
Venous ulcers: microcirculatory improvement and faster healing with local use of Pycnogenol.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16327946&query_hl=1&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16327946&query_hl=1&itool=pubmed_docsum)
Antimicrobial activity of Pycnogenol.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16161029&query_hl=1&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16161029&query_hl=1&itool=pubmed_docsum)
Prevention of edema in long flights with Pycnogenol.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16015414&query_hl=1&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16015414&query_hl=1&itool=pubmed_docsum)
Therapeutic efficacy of pycnogenol in experimental inflammatory bowel diseases.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15742344&query_hl=1&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15742344&query_hl=1&itool=pubmed_DocSum)
Pycnogenol inhibits macrophage oxidative burst, lipoprotein oxidation, and hydroxyl radical-induced DNA damage.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15605443&query_hl=1&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15605443&query_hl=1&itool=pubmed_DocSum)
Antidiabetic effect of Pycnogenol French maritime pine bark extract in patients with diabetes type II.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15363656&query_hl=1&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15363656&query_hl=1&itool=pubmed_DocSum)
Pycnogenol accelerates wound healing and reduces scar formation.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15305320&query_hl=1&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15305320&query_hl=1&itool=pubmed_DocSum)
Pycnogenol and vitamin E inhibit ethanol-induced apoptosis in rat cerebellar granule cells.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15146544&query_hl=1&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15146544&query_hl=1&itool=pubmed_DocSum)
The effect of Pycnogenol on fluoride induced rat kidney lysosomal damage in vitro.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15103674&query_hl=1&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15103674&query_hl=1&itool=pubmed_DocSum)
Pycnogenol, French maritime pine bark extract, improves endothelial function of hypertensive patients.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=14659974&query_hl=1&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=14659974&query_hl=1&itool=pubmed_DocSum)
Treatment of erectile dysfunction with pycnogenol and L-arginine.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12851125&query_hl=1&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12851125&query_hl=1&itool=pubmed_DocSum)
Pycnogenol inhibits the release of histamine from mast cells.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12557250&query_hl=1&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12557250&query_hl=1&itool=pubmed_DocSum)
Supplementation with a pine bark extract rich in polyphenols increases plasma antioxidant capacity and alters the plasma lipoprotein profile.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12530550&query_hl=1&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12530550&query_hl=1&itool=pubmed_DocSum)
Improvement in sperm quality and function with French maritime pine tree bark extract.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12418064&query_hl=1&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12418064&query_hl=1&itool=pubmed_DocSum)
Effect of PYCNOGENOL on the toxicity of heart, bone marrow and immune organs as induced by antitumor drugs.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12222661&query_hl=1&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12222661&query_hl=1&itool=pubmed_DocSum)
Pycnogenol protects neurons from amyloid-beta peptide-induced apoptosis.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12117551&query_hl=1&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12117551&query_hl=1&itool=pubmed_DocSum)
Selective induction of apoptosis in human mammary cancer cells (MCF-7) by pycnogenol.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=10953304&query_hl=1&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=10953304&query_hl=1&itool=pubmed_DocSum)
Pycnogenol inhibits tumor necrosis factor-alpha-induced nuclear factor kappa B activation and adhesion molecule expression in human vascular endothelial cells.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=10892347&query_hl=1&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=10892347&query_hl=1&itool=pubmed_DocSum)
Pine bark extract reduces platelet aggregation.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=10882879&query_hl=1&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=10882879&query_hl=1&itool=pubmed_DocSum)
Procyanidins extracted from pine bark protect alpha-tocopherol in ECV 304 endothelial cells challenged by activated RAW 264.7 macrophages: role of nitric oxide and peroxynitrite.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=9714533&query_hl=1&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=9714533&query_hl=1&itool=pubmed_DocSum)
Evidence by in vivo and in vitro studies that binding of pycnogenols to elastin affects its rate of degradation by elastases.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=6568822&query_hl=1&itool=pubmed_DocSum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=6568822&query_hl=1&itool=pubmed_DocSum)
There are a lot more out there, but I thought these were some of the more interesting ones. I especially thought the last one regarding how pycnogenol protects elastin from the ravages of inflammation was interesting. Enjoy!
-George
For what is worth, before some goes out and spends money on just the French Maritime Pine Bark Pycnogenol, I would suggest you get a blend of OPC with the pink bark in it, this will be from grapes, billberry and pinebark and they do have high grades and from my experience and others I know who use this product it is superior to the pink bark pycnogenol as a stand a lone product.....
Good circulation is a amazing thing for over all good health....I know the best function I have in the bedroom area is when I'm in great carido health.....there is a best seller out on the New York list, I think it is dr. Layman(sp), it contributes healthy erections to the heart health;;;;;
Inflammation reduction will not cure peyronies, but maybe it will stabilize it so it can be remold-ed with VED....
The Nurtaceutical grade Oligomeric Proanthocyanidinnutre (OPC), I did take lots of OPC after the injury to my penis, along with the baths, my circulation is good, I think from doing carido also....I had acid reflux and took it along with drinking aloe and I haven't had any acid reflux for two years, this is how I heard about it....my brother took it for his bum knee, he loves it and has no swelling anymore and takes it everyday....my friends daughter got off her Ritalin for ADD with it.....are body is 70% fluids, you have to keep the blood moving for better health....
Rico
Fascinating stuff, George.
Now I have to spend another four hours scouring the web...
Tim
HI,
I think I goofed when I registred and lost my husbands name (ffmedic). Tried to get to the ladies group but guess I'm out of luck!
Anyway, time to introduce what I refer to as "our" situation. Paul, ffmedic is post prostatectomy in 2005 and 11 years post testicular cancer treatment. Both very successful..knock on wood..no pun intended.
Paul started tesotsterone patches in late 2004 that did what sometimes happens: it surfaced an indolent prostate cancer that was caught early and treated. ED for a 48 year old has been a problem but he's done well considering he's had very low T levels and radiation years ago. He had regained usable function by about 11 months post-op but still pretty dependent on Levitra and LArginine (and pycnogenol). Not a problem, things have moved along.
Then, about 4 months ago he had what looked like a small upward bend that quickly progressed to a 20, maybe 30 degree curvature. There is no pain and no palpable scar tissue, just a bend and a tad of regression in venous leakage, size/firmness from what he had been. It is not a true peyronies from what we've been told but rather a peyronies like condition likely caused by urethral manipulation and scarring. Scarring is peyronies by any other name is it not?
The Urologist had him go back to taking 400IU of E a day and start again with rehab using his VED. The plumpness, so to speak, is improving and his erections are getting back to where they were so something good has happened. I have noticed the venous leakage is still there but his uro believes that will get better in time. I have no clue!
Question...is he doing all he can do for now? VED...how long (in minutes) should he use it? Unfortuantely he can't everyday working 24's.
Just a note. Paul started back on Androgel about the same time as the curvature appeared. Has no connection really. Just thought I'd throw that in. His recent PSA remains <.005. Swim
"Subject line on this post edited for easy reference"
Swimom, Old Man can help you out with any info on the VED. He is our resident expert on the subject. Contact Christine about getting into the Ladies Room, I'm sure she would be glad to help. Keep the Faith...Blink
"Subject line on this post edited for easy reference"
Welcome Swimom and FFMedic,
A special welcome from me because FFMedic and I are the same age and had prostate surgery at the same time (mine July 2005). Take some time to look around. There are a variety of topics including a prostate section under "Off Topic".
To catch you up on whats "hot" as far as treatments go, L-Arginine, Trental (pentox, pentoxifylline) and Viagra (low dose nightly). These 3 are the most discussed of any meds or supplements. There are several research articles linked to from posts. Use the search function (upper right corner).
The PDS Website (see the link on the blue bar above) has valuable information. It is well worth it to scour every portion.
As Blink said, Old Man is the resident VED guru and a good man. Also, if you haven't already, see the VED section of the site. The is a lot of good discussion on the subject over there.
I'm sorry y'all have the need to be here. But, I'm glad you found us and are here.
BTW, Is your hubby a medic with the fire department. If so, a special hats off for providing such a wonderful service to the community!
Liam
Swimom, welcome, and thanks for contributing to the forum.
Quote from: swimom on August 30, 2006, 03:22:30 AM
Then, about 4 months ago he had what looked like a small upward bend that quickly progressed to a 20, maybe 30 degree curvature. There is no pain and no palpable scar tissue, just a bend and a tad of regression in venous leakage, size/firmness from what he had been. It is not a true peyronies from what we've been told but rather a peyronies like condition likely caused by urethral manipulation and scarring. Scarring is peyronies by any other name is it not?
I am interested in who would say "it is not a true Peyronies"? A sudden onset of scarring of penile tissue resulting in a level of deformity, has ALL the components of the definition of Peyronies Disease, and then some. Many men here experienced no pain and have no palpable scar tissue.
QuoteThe Urologist had him go back to taking 400IU of E a day and start again with rehab using his VED. The plumpness, so to speak, is improving and his erections are getting back to where they were so something good has happened. I have noticed the venous leakage is still there but his uro believes that will get better in time. I have no clue!
If firmness is just an observation with no functional problems then disregard the following. If firmness is a functional problem actually caused by venous leakage he might consider an Actis adjustable loop. http://www.phoenix5.org/sexaids/other/actis.html It affords less chance of trauma caused by sliding it off of an erect penis since it is a slip noose made of surgical tubing. It will likely prevent venous leakage since the veins are closer to the outer wall of the penis. It works best if lubricant is not near the base of the penis or on the loop. CAUTION: Vitamin E causes blood thinning in many people. This can result in easier bruising on the body and penis. Over tightening of loop, or use of a constriction ring, or too much vacuum on a VED, or even sex with a semi-erection along with a thinned blood condition can cause blood to be drawn through capillary walls or cause general bruising and micro-trauma. Scaring in general and Peyronies Disease can be made worse. Whole blood trapped around a wound can increase scarring.[/quote]
QuoteJust a note. Paul started back on Androgel about the same time as the curvature appeared. Has no connection really. Just thought I'd throw that in. His recent PSA remains <.005. Swim
Please take my following strong opinion only as concern and a desire to share the information I have gained through less than pleasant means. I am not trying to scare anyone, but I am a prostate cancer survivor. As you know, PC is testosterone fed. It is like gasoline to a fire and already likely brought indolent PC into progression. If any undetectable cell cluster remains, either in the prostate bed or metastasized elsewhere in the body, adrogel will do the same to them. Since PC recurring after a prostatectomy is incurable, I personally could not be dragged near a trace of adrogel unless I had been determined cancer free for 7 plus years. I know several men that have had PC return to detectable levels at 2, 3, and 5 years post prostatectomy. Once detectable PC learns (evolves) to become testosterone independent which means removing the testosterone at that point is only a temporary measure.
I have absolutely NO medical training, but I strongly encourage the two of you to seek more than one urologist's opinion before doing anything to raise testosterone levels. I have been fortunate to discuss such issues at length with some of the best PC specialist in the country. Three out of three urologists in two different states have been emphatic with such warnings, even including certain body building supplements.
PS: I will likely move these posts from the "oral supplements" section afer Swimom's next log in.
PS:Swimom, If you would like your name changed, just send me a private message.
Hawk, Liam,
Thanks for the welcomes and the comments. Yes, Liam, I is a Medic and a firfighter as well as a HazMat firefighter. I work for the community we live in and the HazMat team out fo Detroit Metro AirportThe wife works as a private company Medic and college level EMS instructor. Dinner conversation is pretty interesting!
Thanks for the tip on an adjustable ring and for the warning about testosterone.
I do take..with his Uro-oncologist's okay, quite a few supplements including L-Arginine, the pycnogenol, chrysin, DIM and E although the E was upped since the curvature. There are a couple of others too.
For a year I took 10mg of Levitra nightly and for 10 or so months used the VED but just as a tool for rehab everyday I wasn't on duty. Never did use it for anything else. I have used the larger rings 2-3 times recently without the VED but I'll try the adjustable one. The larger rings work fine but you're right...loosening the noose might be a good thing going on or off.
Now the testosterone. In 95 I had testicular cancer and lost one of the boys. 2 years later they thought there was a new cancer on the other side so the Doc made salami out of it in an open biopsy. Radiation did a little damage of its own and me...I was left with the T level of a 95 year old. In 2004 my wife pretty much booted my butt into the Doc to do something about how I was generally feeling. You know the rest...3 months later the diagnosis was prostate cancer. That's the second time my wife saved my life. Not her intenton to find PCa but she did force me to take my T level seriously after almost 10 years. I tend to be more concious of her suggestions about most things now!
I started back on testosterone after my PSA's all stayed .005 for a year. Having a T level below 200 for a dcade had taken a toll on my physical well being and on my life. I'm 49 and felt 89 and have for years. It isn't a matter of, will that 3% risk of recurrence kill me. It's more like, I let a decade go wasted feeling like an aged and weak shell of who I used to be. For me, it's a quality of life issue. A 3% risk of recurrence is still a risk but I have to have quality to call it a life. It does no good to be rid of the cancer if my life is still destroyed...right? I feel a whole lot healthier these days.
Thanks for the warnings. I appreciate any opinions and thoughts. I understand the risks and work very closely with a University of Michigan team of Doc's. ffmedic
ffmedic, you might want to consider asking your doc about Horny Goat Weed. If you review the list of studies I submitted below you will find that it has both testosterone like qualities AND anti-cancer qualities. It might be an interesting supplement to look at despite its corny name.
- George
I've been reading lots of these messages, and to tell you the truth, my head is spinning. I've had this scourge for, I'm guessing, about 6 months. It's progressed some where the curvature has increased (to maybe 25 degrees, left turn and downwards) along with more plaque. No pain, but erections are weak. My urologist simply put me on vitamin E (400 mg, twice daily). A common thread here seems to be the supplement L-Arginine, so I went out to GNC and bought a load of the stuff. I also purchased Pycnogenol.
For what it's worth, am I on the right track, and what, if any, results can I hope for?
Welcome Pat!!!
There have been several pieces of research and at least one case study showing positive results from l-arginine, pentoxifylline and viagra. The other supplements being discussed, for the most part, are either known to work on th NO cycle or to improve erections by other means.
I consider, for myself, l-arginine, viagra, and pentox to be the constant. I may try other things in addition.
There is the hope improvement may be seen over years. There may be some immediate improvement in erectile function. But, the Peyronies Disease treatment is long term. I wish I could tell you that it work quickly. It is based in research,however, and is better than doing nothing ;).
Liam
My doctor got back to me on Pentox, hes going to write me a prescription he says its pretty safe. My only concern is that he did say it was a blood thinner like others have said on here. Last time I took a high dosage of vitamin E 800IU's which acts as a blood thinner I got the red dots when using the VED. When I cut out vitamin E the red dots went away. If pentox does act as a blood thinner will those red dots return, and if they do how can they be avoided? Is anyone currently working with a VED and on Pentox?
In summary then my current treatment protocol will be:
L Arginine- 1500 mg per day(been on this for 1 month)
ALC- 2500mg per day(been on this for 4 months)
Pentox- Recomended dosage from Dr. Levine
VED daily- 26 week Augusta Protocol
Daily exercising approximately 1.2 mile run
Eating healthier!
And what I've tried so far that failed:
Vitamin E for 4 months (also tried it years ago for 6 months)
Topical Verapamil for 3 months from PDLabs(Doubling doses last three weeks)
Generic Topical Verapamil for 6 months (years ago)
25 Treatments of 20mg/mL verapamil only Iontophoresis
Hi ComeBackid,
A couple of comments for you.
First, I know that you are not the most PATIENT guy in the world when it comes to this stuff! So remember that this therapy was used for six months in one guy to treat Peyronies, and then for an additional year (with continued gradual improvements. In the two cases of priapism reported (which can lead to complete penile fibrosis (not just in the tunica like Peyronies Disease), the patients were on it for over two years, and did not develop that typical outcome. So while those are very exciting findings, remember that in all cases they took it for a long time. Please don't be posting here next week that this stuff sucks because you still have a bend!!! ;D
The second thing is thta your petechiae that you reported (that is what those red dots are called) may have been related to several things. First, if you had applied more pressure than usual, or pplied pressure faster than usual (no gradual increase) you could get "dots". Secondly, if you shaved around the base of the penis to get a better seal the day of applying the VED (or within 4 hours prior to doing it), you may have had some bleeding from the skin because of that. Finally, it is also possible that you may have had other reasons for having a higher hemorrhagic risk that day (aspirin, lowered platelets due to fighting off a cold, etc - the reasons are many). You should be aware that many have taken far more than 800 IU a day without any evidence of a bleeding problem developing. I have taken over 2000 IU a day to reduce Peyronies Disease related progression (When that was the only tool I had, I used it). IT did not ever cuase a bleeding problem, and remember that to a degree it WORKED for me.
I would wait and see what happens before you decide whether or not to fret over it. There is a fact waiting for you to discover - and that fact has to do with the impact of pentox and vitamin E on your coagulation. Worrying about it or thinking about it will not change it; might as well wait and see.
Tim
"If you believe that feeling bad or worrying long enough will change a fact, then you are residing on another planet with a different reality system." - Wayne Dyer
In my pursuit of helping my peyronies and hypertension I am taking a number of supplements known to 'thin' the blood. By the way 'thinning of the blood' has to do with blood chemistry, it is not like adding more water to latex paint as some might imagine. Not all blood 'thinners' work the same. Some affect only external bleeding. Some affect only internal bleeding. And others can affect both depending on what part of the blood chemistry they modify. (Tim, please feel free to correct me if I am wrong!) Among the 'blood thinners' I am taking, are aloe vera, occasionally garlic, Neprinol, nattokinase, vitamin E (probably the equivalent of over 2,000 IU), fish oil, and others. Taking all of these 'blood thinners' I recently tripped over a curb, fell face down hard on a concrete surface with nothing to break my fall seriously abrading one arm. I bled profusely for a few moments and then all the bleeding stopped on its own (I did not even need a bandage, I just washed it thoroughly and applied topical triple antibiotic with a q-tip when I got home) and afterward I did not even suffer a significant bruise or any pain at all the next day. I am sharing all of this only to suggest that it is easy to be overly concerned about 'blood thinning' substances. I think if you are going in for surgery or something like that, then yes, you really need to worry about all these things, since we are talking about possibly cutting and repairing blood vessels or even arteries. But in everyday life usually these things are just not a huge problem. And all the 'blood thinning' substances I am taking put together probably don't add up to the effect that one gets from a typical dose of coumadin. *Of course if you ARE taking coumadin, you need to also be very careful about taking things that additionally 'thin' the blood!!*
Regarding Vitamin E. As I have stated here before on this very forum, there are 8 major variants of vitamin E. People typically only take one of those, and the synthetic version of that. The problem with this is that all of the vitamin E variants are important, and important not only generally, but also in relation to peyronies. When you only take the alpha-tocopherol type, you tend to overload your body with it, and guess what? Your body responds by not only dumping alpha-tocopherol, but also dumping the other seven toco's as well and you can actually end up with vitamin E deficiencies by taking only one toco in large amount. This can actually be counterproductive when it comes to getting a therapeutic affect on your peyronies issue. So think twice before going down to your local drug store and buying the cheapest bottle of vitamin E on the shelf! I found a huge benefit in using a version with all four tocopherols AND all four tocotrienols. It has been well worth the cost, and that cost has been significant.
Thirdly, rutin. Rutin is very effective at strengthening the wall of the capillaries and preventing them from breaking and bleeding when they encounter mild trauma. I am taking Neprinol which contains rutin, therefore I am not taking it as a stand alone supplement. But if you are taking blood thinning supplements, I highly recommend rutin, which I believe can go a long way toward preventing unnecessary bleeding.
- George
George,
Any bleeding "inside" is exactly what bleeding outside is..but the potential for tissue damage is actually greater depending on the wound. I use the example of a head bleed...a stroke. Say the bleed stops... but the blood sits there and clots. This hemolized blood what causes most of the damage to the brain tissues. That's why at first a lot of stroke patients seem okay but later on their symptoms appear a lot worse. Blood and swelling go hand in hand and in some body areas, there just isn't much space to expand. The penis hasn't all that much room to expand and not that much tissue to wreck...so be careful.
Bleeding Most people clot well but for some, they bleed longer and more profuse. It is possible to die from a broken arm if a person' s clotting factors are messed up by natural or unatural means. I would be a worried surgeon if someone was taking as much vitiman E as you are everyday. You are taking way too much E IMO.
FFmedic
ffmedic,
Note that I used the term 'equivilant'. The apha-tocopherol component amounts to only 800IU (the amount prescribed by my doctor), the rest are the accompanying amounts of the other toco's.
- George
FWIW, supplements of vitamin E are not usually associated with intraoperative bleeding problems. This is more of a potential problem for someone with a preexisting bleeding issue, IMO.
George, you are always full of useful information - I will read up on Rutin right away - it sounds interesting.
Also, there might be some benefit from having a less than perfect clotting system - perhaps it is "better" that way. Certainly if you are prone to cardiovascular disease, NOT forming clots as easily in the blood vessel is an important way to prevent stroke (by preventing thrombosis formation). But for the few patients I treat with hypercoagulation, there is always the risk of an internal injury bleeding out. Thus, a stroke (diminished blood flow) to the brain leading to neuro injury is no better or worse than cerebral hemorrhage, with bleeding into the brain because of diminished clotting ability. Both suck.
In terms of Peyronies Disease, I think the blood effects are irrelevant - clotting or hemorrhaging in the penis are both rare. The good effects of the antioxidant effects of E are important. But given the overall less than perfect track record of vitamin E helping cure Peyronies Disease, it seems sensible to err on the side of less, not more.
I take 400 IU once or twice daily. Here is what Dr Weil said on this topic:
***********************************
Q: Is vitamin E dangerous?
A: I understand your concern. Here's the story: results of a new analysis from Johns Hopkins University suggest that taking daily doses of vitamin E that exceed 400 international units (IU) can increase the risk of death. The researchers arrived at their conclusion after analyzing death rates in 19 unrelated clinical trials that studied vitamin E supplementation for various health conditions. The trials took place from 1993 to 2004 and all together included more than 136,000 patients in North America, Europe and China. The vitamin E doses used in the different trials ranged from 15 to 2000 IU per day; the average daily intake was about 400 IU.
The technique used to arrive at the Hopkins' results -- called meta-analysis -- can only raise questions, not answer them. Vitamin E has no known toxicity, except for an anticoagulant effect that is usually desirable.
The analysis found that taking a daily dose of 200 IU per day presented no increased risk of death and suggested that it might benefit health. However, the researchers found an increased risk of death at daily doses exceeding 200 IU; for those taking daily doses of 400 IU or more the risk of death was about 10 percent higher than among those taking placebos.
But the analysis also revealed some seemingly contradictory data. For example, one of the studies showed that among people who had had a heart attack, taking vitamin E was correlated with a lower risk of a second heart attack. Despite this encouraging finding, the patients taking the vitamin E were more likely to die than those taking the placebo.
It is important to know that most of the patients in all of the trials analyzed were over 60 and had pre-existing health problems such as heart or kidney disease. The Hopkins researchers conceded that because of the age and compromised health of the study participants, their findings might not apply to younger, healthier people. The study results were presented on Nov. 10, 2004, at the American Heart Association's Scientific Sessions in New Orleans. They were simultaneously released on the Web site of the Annals of Internal Medicine.
My feeling is that the health status of the study participants could be the problem here – perhaps the vitamin E had some unpredictable bad effect on their pre-existing conditions or didn't mix well with certain medications. The researchers also may have overlooked controlling for the form of vitamin E used in the various studies. Natural vitamin E in the form of mixed tocopherols can possibly provide different benefits than synthetic versions limited to alpha tocopherol. We've seen in the past that under certain circumstances supplements can have unexpected, negative effects. For example, two major studies have shown that straight beta carotene supplements led to more, not less, lung cancer among smokers.
Based on what we know now, my advice is still to take supplemental vitamin E in doses up to 400 IU a day but not exceeding that. Avoid dl-alpha-tocopherol and look for products that include all four tocopherols, not just the d-alpha form. Better yet, try to get the whole vitamin E complex: four tocopherols plus four tocotrienols. But, as always, be sure to discuss with your physician any supplements and medications you take – over the counter or otherwise.
Andrew Weil, MD
*****************************
ps - I take the vitamin he makes and sells under his own name. I respect his work a lot, and trust his integrity, especially when it comes to manufacturing processes.
Tim
Hello to the group,,sorry i haven't been able to be around for awhile...Between my gut pain and having family here all summer, i haven't had time for much else..
But this morning i have something to report..As you may know my doc prescribed Trazadone for my stomach problems and it dose help a lot in keeping the pain down..I take 25mg at bedtime, and i have never noticed having night time erections, maybe once...Well, last evening my wife wanted me to take a viagra,,i take 50mg,,,,and we had a good one, and afterwards before turning out the lights i reached over and took my Trazadone...I slept but my body didn't,,i had erections all night long and woke up with a really bad headache and felt bad all over..Felt like i had been run over by a truck....Man i'll never do that again....My first thought was to get up early and write a post to warn others not to make the same mistake......
Also, about the vita-E posts,,,,i had been taking 400 to 800 iu for about 7yrs for my peyronies and i do believe it did help in the healing process to a degree, but the past few months i had been having increasing dizzy spells and after reading Pudders posts about it being a blood thinner i stopped taking it and my spells have decreased but not stopped...I have been off of it now for almost 2 months, when i take it again i will take much smaller amounts.....
Anyways, i hope someone will post something on the lighter side about me taking the bad combination, i'm sure they will come up with something...
I hope this info will help someone else and i'm glad i can come here and read and post,,,,,hope all of you have a good day,,,blessings to ya....kimo
I won't typically disagree with any Doc. Being that I have to work with Doc's and nurses, getting along makes for a better day all the way around. But...when I have seen hundreds of emergencies per year for 30 years, I have learned an awful lot about bleeding. Albiet, most patients with bleeding issues are elderly and while healthy younger people bleed to a lesser extent, they still bleed. The one thing I can absolutely put on my take home list is that those who take E for extended periods of time bleed longer. For those who take ASA plus E, they bleed longer still and for those who take thinners, even a simple nose bleed can be a true emergency. Take it for what it's worth.
It is doubtful that the benefits of E exceed much more than 200IU however the side effects of E probably start at about 1000IU. Just my own 2 cents. FF
Viagra alone can cause a "hangover" feeling of a headache in the morning. That feeling is MUCH more likely to occur if one drinks ANY alcohol at the same time. Don't know if you had had any wine or anything, Kimo, but worth considering.
I agree that it might make sense to not take a trazadone and a viagra the same night - but it is interesting that the combination did increase your nocturnal erections, whereas one alone might not have (you mentioned that trazadone had not done that; not sure if viagra alone has done that for you in the past).
To ffmedic - the data are weird (I started to read up on this). Mortality rates are higher in some studies, but the data are not there on whether or not that information applies to younger men or women. Some of the patients did "better" but still had higher mortaility rates.
Your comments on vitamin E are very interesting. Usually, we don't even get a history of what vitamins someone is taking. Probably we should. I take care of kids, so all of this is less common.
Tim
The first things I always try to look at with a given supplement OR drug are:
1) Known levels of toxicity (Some supplements commonly sold in health food stores are toxic in and of themselves or become toxic once a certain level is reached). In my mind Vitamin A is a PRIME EXAMPLE. To few people are aware of the toxic potential of Vitamin A and the fact that cod-liver oil, a popular supplement contains high levels of vitamin A.
2) Known levels of contamination risk (Some supplements, due to their source, are much more prone to contamination than others. Some carry the risk of contamination from heavy metals such a lead or mercury. Others from pesticides and herbisides. Still others from more exotic and insidious sources. In some cases, certain herbs are grown in an enviroment where other species grow that happen to be known and potent carcinogens. Want to add some of that to your diet? Not me!)
3) Known side effects. (Even highly beneficial supplements can have side effects. Is there benefit worth the pain?)
4) Known interactions with other drugs and supplements. (Most of these are minor and are simply things to be aware of, others are potentially deadly. It is important to learn and know the difference.
5) Known effects on other nutrients. (Most natural nutrients either increase or deplete levels of other totally unrelated nutrients. This is just one of the problems with alpha-tocopherol as a stand alone nutrient. But also increased levels of vitamin E along with increased levels of vitamin A CAN gang up to deplete vitamin K which CAN lead to serious clotting issues.) All of this is actually related to interactions, but often studies, as well as individuals, tend to overlook the possibility that the problem is not being caused by the nutrient itself, but by its collateral damage which could be easily corrected if addressed. In fact an interesting case would be the matter of statin drugs which not only deplete cholesterol (a possibly beneficial effect), but also deplete levels of serum CoQ10, an essential nutrient. This in and of itself can lead to heart failure and few health professionals pay attention to this subtle but important side effect/interaction that could be easily remedied. My strong belief is that everyone on statins should also be concurremtly on CoQ10 supplementation, it would do them no harm and could very easily extend their life, since statins actually block the bodies ability to synthesize CoQ10.
My point here is that you all out there, including medical professionals, make it a point to pay attention to the subtle effects of various supplements and drugs, and not be afraid to ask questions and expect straight up and verifiable answers.
My sincerest appologies to all for beiing extremely off-topic here, but I believe these are some essential issues concerning supplements and drugs in general.
- George
To ffmedic,
I would suggest two issues here.
One would be that most of people who take vitamin E take only alpha-tocopherol and most of those take the synthetic form because it is significantly cheaper. It is very interesting to me that in spite of all of the concern over vitamin E and bleeding, NOT ONE STUDY has been done on the 'full spectrum' form of vitamin E. NOT ONE STUDY! Not one study as to its efficacy, not one study as to its side effects, and not one study as to its effect on bleeding. So we really don't know the potential benefits of higher amounts of 'full spectrum E", only the lack of benefit of higher amounts of synthetic alpha-tocopherol. Additionally, not you or anyone else really KNOW how 'full spectrum' vitamin E effects bleeding. You are simply ASSUMING that it has the same effect as the typical synthetic Vitamin E that has been used in virtually all the studies and investigations. Although I have to commend you for wanting to err on the side of caution, it is actually not a very scientific approach. Personally, I find it positively scandalous that know one really knows anything about the pharmacology of most of the vitamin E tocos, even though they are a ubiquitous part of our nutrient ecosystem.
Secondly, I recently looked at a standardized mortality chart (a pie chart actually) that indicates what percentage of people die from what causes. The slice representing people dying from various forms of thrombosis was like half the pie. The slices representing those dying from trauma made up barely a sliver. So while you are fixated on those folks you attempt to assist who have compromised their situation by taking too much vitamin E, perhaps you are ignoring the fact that other equally serious cases involving thrombosis might not even have occurred had the person in question been taking a sufficient amount of high quality vitamin E.
Just my thoughts,
Respectfully,
- George
George,
I'm not looking for an arguement nor am I looking to show how well read I am. These are simply observations and opinions but thanks for the lashing. Time to move forward to more constructive subjects, eh? FF
ffmedic,
Not intended to be a 'lashing' at all. Just food for thought. I much appreciate you, your input and your perspective, only trying to balance it out. We are each feeling a different part of the elephant and together we can all make a difference. Indeed! Time to move on!
God bless you!
- George
Brothers in Arms,
I was going to run over to GNC and pick up a couple of supplements....I went to the site and was looking at the Vitamins ect...
I found this Mega Men: Performance and Vitality Program
It is 35 dollars for a gold card member.....it has everything we are taking...Plus...I thought it had a good arginine blend also, plus the maca, goat weed, and prostate health, and vision, you can down load the label, it comes in packets......I was pleasantly surprise that they have pretty much which most of us agree on in a package...
I know I don't like having lots of bottles around and opening them and it can be a hassle traveling ect....they put 30 packets in each container....I think it is worth a look at if you are looking for a simple approach to your supplements......
I going to pick up two months supply tomorrow....prostate, heart health, cardio health, vitality health, with a good multi all in one package....
Good Bless,
Rico
Rico,
I have seen several such multivitamins, some of which contain just what I want. But not enough.
For instance,this multi has only 100 mg of acetyl L carnitine, 25 mg of zinc, 100 IU of vitamin E and so on. I found a great vitamin that had wogonin in it - which is very active against Peyronies Disease placque in vitro and prevents progression or formation of placque in a rat model - but the amounts are basicly trace amounts!
It is hard to push a biochemical action with lower doses of ingredients in the equation. It is abiochemical principle called "mass action" (kind of like the Viet Nam war protests) that says if A + B = C, then more of A and B will create more of C. I fear the t the amounts in these multis are too low - and if I take 10 of them to get the proper dose of what I want, then the dose I get of other vitamins will be too high.
instead, I try to find such multis at a good price and take them for everything else, and push the targetted reactions with specific ones (like ALC). For traveling, I found that I did OK (for two week trip) by sorting out a days supply of vitamins and putting them in baggies - I used a second baggy for the PM vitamins. That worked well for me on my recent vacation. I also do that every two weeks to keep regular in my usage (irregularity in using supplements has been a problem for me - i have a lot of trouble just remembering to take them!). It is much easier to simply pick up a baggy and take the capsules in it, than to methodically open ten bottles (or more) every day - some twice a day.
Tim
Well I picked up my pentox today along with a refill on trazodone. With my drug coverage I saved $6 on trazodone, and $45 on the pentox, with the coverage the pentox was only $10 and the trazodone $4.
I then asked for viagra... they told me it would be $349!!!! and my insurance will only cover 6 pills per month for free! Needless to say I didn't walk out of there with the viagra prescription so I won't be taking that anytime soon. Did anyone else run into this problem, or did your insurance cover daily viagra? I'm wondering if theres much I can do about this?
Tim,
I think you are above average being a doctor and mixing and matching your supplements, this brand had 1000 mg of arginine plus many other benefits I felt that the heart health and vision, plus the needs for sexual health...plus there is science and study behind it...I thought that it is a good choice especially if someone is new to the peyronies and he wants to start something and then maybe if you felt you wanted to add a little more alc then you could....I have a pill box that I can make a week in advance and it makes it pretty convenient also, once again I felt myself that someone put some study into this mix and it made sense to me for my eyes(I wear glasses), prostate(over 50), general health and then the sexual vitality blend was a good start and the aminos along with a extra kick of arginine, which seems to be the supplement of choice by the medical field....
I think if I was new to peyronies and over all health, for a dollar a day I could get a good start with this product, and as I learned more I could tweak it a little....it even had omega three and oatmeal and the OPC.....
I also feel that it is more of a Nutraceutical grade and this blend has been thought out for men as stated.....
Maybe when you read about heart health and sexual function there could be some truth to it, and good prostate health and over all good circulation and vision health ect....this also has a good stress formula with the b vitamins.....anyway I not trying to sell this, my thought was a good start program for most and the price and combination cover all bases that I'm looking for....maybe over dosing on one supplement which hasn't prov en to cure anything is not the right way to go either, but a well thought out formula put together by a well thought out group backed with research is something to think about also.....take care and thank you for your thoughts...
Rico
Whoa, I guess I won't be trying out Viagra soon, it makes my old Goat Weed seem like a real bargain! And shame on you Tim for mentioning wogonin. I just had run out and buy some. Viagra makes it to look like a major bargain as well.
- George
Tim,
As far as mass action like in the Viet Nam protest which was a bad way to do anything in my opinion, I was part of Operation New Life, I helped evacuated Viet Nam, this was a more proactive and thought out effort in my opinion, plus at the same time we were protecting are shores for the protesters could stay in college and enjoy free speech....
We had a plan and follow it and it was well thought out, and I believe in the plan that was put behind this type of supplement, it is more of a whole body approach also, sometimes one wonders if you could be over loading a one product and throwing off you balance...your body produces or gets from food many supplements, but if you over load, it also has memory and will look for the supplement....this is why one might look into taking a week off once in awhile if you are taking many heavy doses....nox is nox(circulation) if you get it from arginine or running or a combo, not everyone with peyronies has ED...
I read about people taking large doses of alc, arginine ect....or taking a drug to sleep, one to wake up, they start becoming like Elvis.....
I only take alc in the morning, a small amount, it makes me alert and seems to give me a good mood feeling, if I take too much, it keeps me up at night, arginine, I take, but also get plenty in my diet....
Anyway I guess I look at a plus b plus c and a plan works if there is study behind it and over health is very important and this look more than a average multi.....
Rico
I will be brief (for me).
I have had 3 prostate biopsies. I don't want to scare anyone off from one, if it is called for by all means get one. So far, it has saved my life. Most are not too bad. One was a very bad experience especially after the fact. It was my first one. I was warned of some pink urine and to relax for 24 hours. I have a friend that went hunting a few hours after one (my hero).
Well my first one was an indescribable blood letting when I went to urinate. I am not squeamish but I cold barely look long enough to aim. I could be more explicit but is would scare men unnecessarily since I have never know another case like mine. I called the on-call doc who was not my particular urologist. He said are you taking aspirin etc etc. I said no. I read the list and am taking nothing cautioned on the list. He said, "no vitamin E?". I said, "hell yes I am taking vitamin E, that's no where on your list". He then said while it normally is not as bad as some other substances as a blood thinner, it can prolong bleed times in some people. I stopped the vitamin E and stopped bleeding within 24 hours. Since most people do not bleed I was not real convinced of a connection. It could have stopped on its own anyway. Well after 7 days (you only have precautions for 24 hours), I started vitamin E again. Within 24 yours I was passing blood. very rare for a prostate biopsy. It no doubt hit a blood vessel. The point is that my searches have turned up that it does impact different people differently, and one source of un-authenticated origin said the O blood types are most affected. I am O neg. When I discontinued Vitamin e the second time the bleeding stopped again within 24 hours. I did not take it for a month. It was natural vitamin E. I take mixed tocopherols now but at the time I may have been on natural Alpha only. 850 IU per day. I can tell the difference in bleed times when on vitamin E and getting stuck for blood tests, and I have had lab techs comment.
Needless to say subsequent biopsies saw me taking NO vitamin E and I ate kale for 2 days to load up on vitamin K (no other source comes close). I had no slight bleeding issues with my other two biopsies.
Check out this commercial vitamin sales site and look at the vitamin guide. I think it reflect very balanced information and drug interactions, dosage, food sources, etc. Click on health notes on the right and Vitamin guide on the left of the window that opens.
http://www.puritan.com/house/helpcenter.asp?xs=2E5D704C8D37405FA3A5DFFA1DF1AC68#
Again, a great guide on herbs from Memorial Slane-Kettering Cancer Center
They include any known clinical studies, and I detect no pro or con bias.
http://www.mskcc.org/mskcc/html/11571.cfm?RecordID=548&tab=HC
This link takes you directly to the Yohimbe section of the site, but you can search any herb once there.
ComeBackid,
I think your insurance coverage for Viagra is pretty standard. My plan covers only four pills per month; from that point on, I would have to pay the retail price.
All insurance plans have an appeal process. Have you looked into that? It probably would involve your physician writing a letter to the plan (or perhaps a phone call would be accepted) justifying why you need it. I recently appealed a non-coverage of Celebrex (COX-2 inhibitor) and my physician's nurse handled it over the phone.
If you don't know the appeal procedure, call your plan. Good luck.
Hawk, thanks for your input on this important issue. Certainly in the case of a biopsy or surgery, I would discontinue not only vitamin E, but also all the other supplements the exacerbate bleeding. But I am curious about one thing. You note that you can tell the difference when you have a blood draw done. It is a known fact that high levels of vitamin E plus high levels of Vitamin A can deplete the body's store of vitamin K. I wonder if in the case of some people vitamin E alone can deplete levels of vitamin K and thus cause the bleeding problem. So what would happen if you were to take a vitamin K supplement along with your vitamin E for a few days before a blood draw? Does this sound like it might be an interesting experiment? I am just curious what the effect might be. Might it be possible that some people who are taking vitamin E should also be taking a low level vitamin K supplement? If so, perhaps vitamin E supplements should have some vitamin K 'built in' as part of the same softgel. So why isn't anybody (like the supplement industry) doing this kind of basic research?
- George
There are so many hoops people jump through for routine medical scripts. Getting approval for off lable usage is 10 fold more difficult. It is also typically unsuccessful in our experience to boot. What is the percentage of men in here who do get insurance to pay for an off lable use of the VED....or any drug for that matter? Sounds like part of the problem lies in getting Physicians to write VED scripts in the first place. Drugs are often a different story. Docs write for them but insurances reject claims because a certain drug isn't "approved" for the use it's written for. I could kick myself for not keeping the Soma Correct our supplier accidentaly sent us! I made them send Paul the right one...DOH!!! Who knew?
Since most Docs still think there is little to benefit in the use of a VED for peyronies, it will be a while before it's widely accepted. Once it is a proven treatment, insurances will be covering VED's. Like magic...the cost will suddenly go way down when that happens! There are, what looks like, a few studies so far but, none are very old. I haven't seen any head to head trials. Are there any?
PDE5 drugs are in the same boat...still off lable or still a week-end recreation drug. Sucks IMHO. I feel like those with genuine health disroders are being grouped in with any ole Joe wanting Viagra for kicks. Docs are the least at fault though. A few years ago, Pharmasists across the country filed suit to stop the free sample saturation in the market place. Pharmacy profits were being affected.
While drug companies were making money, drug stores weren't getting their share. Anyone recall all the coupons for 6 free samples? The makers of PDE5 drugs could have cared less. More money for them in the end. The product was already out there by that time. I suspect when the patent runs out sometime this year, everyone will be able to better afford Viagra.
I'm guessing the next genration of PDE5 drugs will contain an NO doner. Just think...you guys will be one up on Pfizer already. Arginine and the generic version of Viagra will prove more cost effective than the 4-8 pills a month our insurances pay for! Swimfly (formerly known as swim) Prince, eat your heart out..HA!
Swimfly, I just couldn't agree with you more. Unfortunately it is the big drug companies that fund the research engines of the world, and the supplement and VED makers are hung out to dry. They have some big money, but merely a pittance in comparison to the big pharmacuetical operations and it wouldn't surprise me if any major research institution daring to "offend" any of their major "patrons" by doing conclusive research on non-pharmacuetical substances or devices would end up paying the price. Its totally maddening, especially when you add the insurance layer on top of that.
As for PDE-5 inhibitors, that is another maddening situation. What eventually became Viagra was supposed to have been a killer hypertension drug until the pharm company discovered it could make them more money as a 'sex drug'. So those of us with truly life threatening issues were dumped for those who wanted and could afford an extra kick for their sex life. Don't get me wrong, I'm not intending to put down those truly suffering from ED. That along with Peyronies is a legitimate malady that should be covered without question. Its just that I see how Viagra has been pimped on TV and it certainly appears that they have aimed it at people who might not even need it. The same applies of course to Levitra and Cialis.
And is Viagra REALLY going OFF PATENT sometime this year! That is really exciting! :D That means that they along with generic vendors will have to come up with new applications for it to make it pay for itself. Yes! Until then, its Horny Goat Weed and Korean Red Ginseng for my PDE-5 issues. (Correction by George as of 10-06-06 -> While Korean Red Ginseng has been shown to have an apparent positive effect on NOS, it is not a known PDE-5 inhibitor.)
- George
When I have prescribed viagra for pulmonary hypertension, (a 3 times daily dose) it has been fully covered. it is approved for that, though. "Off label" use of a drug is unlikely to be reimbursed, however.
Although I am no fan of the drug companies, I can see how they might feel about paying for, say, iontophoretic use of verapamil. We have read a few reports and get excited about it. They take a more sensible fiscally conservative approach. Looks like they may be 'right" - for now.
In reality, there are a few reports of viagra helping in fibrotic conditions - and that is enough for me, but not for them, I am sure.
Tim
If Peyronies Disease causes you to have less than perfect erections, is that not organic ED? Would this not be the route to take for having insurance cover PDE inhibitors? Instead of going to the doc saying I want to treat Peyronies Disease, please give me Viagra, itay be better to say, "My Peyronies Disease is causing me to have ED. Can you give me something to help the ED?"
I'm sure most of us have tried that approach. But, for somebody new, maybe that will help. If you've tried this and it has NOT worked, let us know.
Liam, great idea! Perhaps Tim can comment. I have even thought of that in terms of essential hypertension. Hey Doc, my hypertension is causing me ED (and I really need to have sex at least three times a day in order to maintian my sanity). I wonder, what do you think Tim, would that fly or no?
- George
I think it would be useful to get viagra prescribed for ED, as that will be covered. Most plans only cover 6 pills a month - so if one got 100 mg pills, and cut them into quarters, one could take 25 mg a day for 24 days a month. You can also pay out of pocket for a few more pills - I have previoously purchased ten viagra on one month, and four out of pocket plus copay came to about $80. Still too much of course. But getting ten Cialis (not at all covered) was about $300!
In one of the reports of the Pentox/Viagra/arginine treatment, a guyused 50 a day of viagra, another used 25 a day, and a third started on 25 and increased the dose to 50 a day. so if 50 a day is "better", then you would need at least 15 Viagra a month, which is not covered (for ED) by anyone. The HMO's claim it is "untried" at that frequency, and could be harmful. And remember, that if one guy keels over dead from havingt a heart attack while on every other day Viagra (well, that is what they would think the dose was going to be...) then they could be held liable (I think). Certainly the doctor could be hed liable.
And speaking as a doc, I would rather annoy or frustrate a patient, than to be putting myself in a bad position for medical malpractice. Couple that attitude with a lack of understanding of how PDE4/5 inhibition could work as an anti-inflammatory, and you may find it hard to even get a script for Viagra at higher doses than 6 pills a month.
I did not know it was going to go off patent so soon (I thought it was 17 years - but I do not know when the countdown started for Viagra). Until then one could go to off-shore sources (potentially illegal or bad quality medication).
Tim
George,
Unless you live in Utah or AZ with the Jeffs crowd...who the heck ya gonna get to have sex with 3 times a day? If you were to ask a Doc (or insurance company) for drugs, using the reason you've stated, all you may get is a big ole bottle of bwah-ha-ha! ;) Let us know how that paln works out, eh?
Some of you may have noticed Tim's mention of wogonin as a possible helpful substance in treating peyronies. But if you do any amount of researching of wogonin, you will learn that it is a nitric oxide inhibitor. So, you might wonder, if wogonin is a nitric oxide inhibitor, how can it be helpful in treating peyronies. Well, as is often the case, the devil is in the details. Wogonin actually is a very specific nitric oxide inhibitor. It inhibits only one of multiple nitric oxide synthase processes. The one it inhibits is the one used by certain bacteria and certain immune system cells. That makes it both anti bacterial and anti inflammatory. That process is referred to a iNOS (inducible NOS or NOS2.) What we are concerned about with Peyronies is eNOS (endothelial NOS or NOS3). That is the process that dialates blood vessels and other vascular tissue. We are also of course concerned with the erection process which is actually stimulated by the nervous system and is thus dependent on nNOS (neuronal NOS or NOS1). Thus, wogonin very neatly inhibits exactly the NO process which is the culprit in peyronies making it a unique tool with which to target peyronies. And the primary source of wogonin is an herb known as Baikal Skullcap. Baikal Skullcap also provides baicalin and baicalein, which also have fascinating beneficial effects. But that is another story. Hopefully commercially available Baikal Skullcap doesn't also provide the other sorts of nasty toxins Asian herbs are famous for. Oh well ... life is a risk.
Tim mentioned that Viagra is approved for treatment of pulmonary hypertension. It would certainly be interesting to know if someone being so treated also suffered from peyronies and what the effect on the peyronies might be, but pulmonary hypertension is rare enough, it would be difficult to find such a situation. I understand that right now Cialis is in the trial phase for approval as an advanced treatment for essential hypertension. I think that might be really interesting if it were to get so approved. I suspect a significant number of people suffering from essential hypertension concurrently suffer from Peyronies Disease. In that case, the effect of a Cialis regimin on Peyronies Disease would be really interesting and might (hopefully) drive some research in that direction.
The study I read about Wogonin was fascinating, and showed that it prevented fibrotic activity in Peyronies Disease derived cell culture, and prevented fibrosis in a rat model of Peyronies Disease. figuring out dosage is tough though. The specualtive part of the paper mentioned a dose, and that which I have found available is about a tenth of what they suggested (details escape me right now). Frustrating.
OTOH, I just discovered a Chinese herbal store in town where they can mix up the raw ingredients used in such concotions. So I may have to go down and do some non-book learning!
Tim
If your body is not getting enough calcium your body pulls it from your bones, if you have scar tissue it will cause it to calcified it, we need up to 1000mg a day and should be taken over a couple of periods a day....something to think about.....
Rico
Quote from: Liam on September 04, 2006, 06:30:29 AM
If Peyronies Disease causes you to have less than perfect erections, is that not organic ED? Would this not be the route to take for having insurance cover PDE inhibitors? Instead of going to the doc saying I want to treat Peyronies Disease, please give me Viagra, itay be better to say, "My Peyronies Disease is causing me to have ED. Can you give me something to help the ED?"
I'm sure most of us have tried that approach. But, for somebody new, maybe that will help. If you've tried this and it has NOT worked, let us know.
My UOR said that peyronies did cause ED and he wrote a letter to my ins,,it took 2 times and they started paying for all of my Viagra, 30 pills a month,,,and of course i got the 100mg...I also wanted to add that these letters got my ins to pay 100% on my VED which was about 455.00.........kimo
Kimo,
Good for you buddy. There is no question that my peyronies has slowly given me ED, sometimes partial ED where I couldn't get a full erection. Now I get no daytime erections, however the trazodone has helped to spark about 2 a day.
ComeBackid
Kimo,
Good for you, my blue cross has a clause for anything with ED....I don't have ED, but I still thinks it isn't fair that ED is looked upon the way it is, I try to go around the peyronies, by getting the VED for ED, they had me double blocked, they did pay for my topical verapamil or co pay was 20 bucks for the worthless crap, and covered most of my doctors visit cost me 88 bucks, I went in once to see him, which was good because I had to have him send me a script for my VED, which took him forever, either them or Soma Correct had a hard time getting the fax sent, which I don't know if they still did as of today, I have all other paper work filled out with them....I guess if your selling dick pumps all day you probally go out for a few drinks after work:)....anyway I will be happy to get it, I can't believe I order one, I fill like I'm getting a new golf club or something from a infomercial or something.....I will say this site has given me confidence in getting it though, Thanks Old Man!!
Rico
I think we're slightly getting off the Oral treatments topics maybe. I'm gonna jump over to where I have a question about Insurance if someone can help.
Thanks
Zig
Tim, regarding Baikal or Chinese Skullcap (apparently they are the same thing). While it is a good source of wogonin, there is unfortunately a fly in the ointment which I just discovered AFTER ordering a bottle of the stuff. They have apparently had a few cases of reported liver toxicity in Europe (none known of here in the US) apparently from the skullcap being contaminated by germander. Germander used to be sold as an herb for all sorts of ailments until it was pulled by various governmental agencies due to its nasty liver toxicity. In Europe they even went to the extraordinary degree of attempting to erradicate it as a plant. So, while skullcap itself has no known toxicities, there have been issues with germander possibly finding its way into it either accidentally or deliberately, so beware. Ask the herbalist about that problem and let us know what his response is.
Thanks,
George
References:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8125230&dopt=Abstract
http://www.consumerreports.org/cro/health-fitness/drugs-supplements/dangerous-supplements-504/12-supplements-to-avoid/index.htm
http://www.selectoils.com/item--GERMANDER-POWDER-Herb--HB-P771+GERMANDER,+POWDER+Herb.html
Thats right! Its a known poison and there are people out there selling it - the real thing! Pretty amazing!
Possible contamination is part of the problem with such herbal remedies, and a lack of standardization of manufacturing processes.
Tim
Tim
There are lots of references to the isolation and purification of Wogonin from plant extracts. Also it has been synthesised - it is a fairly simple molecule. Is this the goal, or is the idea to get a reliable source of natural Wogonin free from toxic contaminants such as Germander?
Percival
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1527-3458.2005.tb00266.x?cookieSet=1&journalCode=cns
Therapeutic Potential of Wogonin: A Naturally Occurring Flavonoid
Man Chun Tai1, Shui Ying Tsang1, Lawrence Y. F. Chang1 and Hong Xue1
ABSTRACT
The search for flavonoids with novel therapeutic effects has been intense. Wogonin, as a naturally existing monoflavonoid, has been shown to have therapeutic potential in vitro and in vivo. Methods for its extraction from herbs and its chemical synthesis have been developed. Pharmacokinetic studies have shown a rapid tissue distribution and prolonged plasma elimination phase of wogonin. It has been shown experimentally that wogonin exerts anti-oxidant activity, which may, in part, underlie its antiinflammatory, anti-cancer, antiviral and neuroprotective actions. The recent discovery of its anxiolytic activity suggests a new mechanism of action, involving interaction with the benzodiazepine (BZD) binding site of the GABAA receptor and modulation of this receptor activity. Although the safety record of wogonin is remarkable and voluminous literature about its pharmacological effects is available, it has not been used in Western medicine in the form of a pure chemical. In this article we review its therapeutic effects, its sources and pharmacokinetic profile to highlight its therapeutic potential
Dear forum members and guest,
I have been looking at alc and I do take it in the morning now, I think for being over fifty it helps with brain function:)....mood improvement.....
My question is that other than the one study I read from Sweden, I haven't found any other articles associated with peyronies...and I don't see Levine or anyone suggesting it.....arginine is another story and to me a no brainier for wound healing and is the most natural ED cure out there....all the male enhancers seem to have this as the main ingredient....they do have some now with time release....
If anyone can tell me why alc other than the stress factor associated with this condition... thank you...and God Bless...
Rico
There are two studies of note - I know of no study from Scandanavia.
Not a ton of data to go on, but given it's beneficial effects in other realms, it seemed worth trying to me. I take a gram of ALC and a gram of PLC twice daily. I just got my bulk ALC and PLC from "bulknutrition.com" (seems to be the same as "goendurance.com"), and I also got a capsule filler. It turns out that this stuff smells NASTY! The caps I make (it takes me about 5 minutes to make a hundred 500 mg capsules) are also available from the same vendor, and I got 1000 for $11, and the capsule filler for about $15. Since the chemical is about a third the price when bought in bulk, it is already paid for and then some.
Who would ever have thought that was how I'd be spending a Friday night... I felt like a drug dealer - white powder spilled over my countertop.
Tim
*********************
Acetyl-L-carnitine vs tamoxifen in the oral therapy of Peyronie's disease: a preliminary report.
Biagiotti G, Cavallini G.
Andros-Italia, Perugia, Italy.
OBJECTIVE: To detect whether oral acetyl-L-carnitine might be useful in the acute and early chronic phases of Peyronie's disease, compared with tamoxifen, a drug currently in use. PATIENTS AND METHODS: The study included 48 patients with Peyronie's disease (15 acute and 33 initial chronic), randomized equally into two groups. The first group used tamoxifen 20 mg twice daily for 3 months and the second acetyl-L-carnitine 1 g twice daily for 3 months. The disease and stages were diagnosed and identified using a history, objective examination, pharmacologically induced erection, autophotography during erection, and basic and dynamic colour Doppler ultrasonography. Penile curvature, plaque size, pain and disease progression were assessed. The differences between the groups or between the variables before and after therapy were compared using analysis of variance or the chi-squared test. RESULTS: Acetyl-L-carnitine was significantly more effective than tamoxifen in reducing pain and in inhibiting disease progression. Acetyl-L-carnitine reduced penile curvature significantly, while tamoxifen did not; both drugs significantly reduced plaque size. Tamoxifen induced significantly more side-effects than acetyl-L-carnitine. CONCLUSIONS: These results suggest that acetyl-L-carnitine is significantly more effective and safe than tamoxifen in the therapy of acute and early chronic Peyronie's disease.
************************
Oral propionyl-l-carnitine and intraplaque verapamil in the therapy of advanced and resistant Peyronie's disease.
* Cavallini G,
* Biagiotti G,
* Koverech A,
* Vitali G.
Medicine Reproductive Unit, Societa Italiana Studi di Medicina della Riproduzione (SISMER), Bologna, Italy. giorgiocavallini@libero.it
OBJECTIVE: To ascertain whether oral propionyl-l-carnitine combined with intraplaque verapamil is a useful therapy for advanced or resistant Peyronie's disease. PATIENTS AND METHODS: The combined drugs were assessed in two studies. In the first, 60 patients with advanced Peyronie's disease, diagnosed using accepted definitions, were randomized in two subgroups treated with verapamil intraplaque infiltration (10 mg weekly for 10 weeks) plus a 3-month administration of propionyl-l-carnitine (2 g/day), or verapamil infiltration plus oral tamoxifen (40 mg/day) for 3 months. In the second study, 15 patients with resistant Peyronie's disease (progression despite previous therapy) received verapamil plus propionyl-l-carnitine. The differences between subgroups or between the variables before and after therapy were compared using analysis of variance or the chi-squared test. RESULTS: In the first study, the reduction in pain was the same in both subgroups. Propionyl-l-carnitine plus verapamil significantly reduced penile curvature, plaque size, cavernosal artery end-diastolic velocity, the need for surgery and disease progression, and increased the International Index of Erectile Function score and resistivity index of the cavernosal arteries. Tamoxifen plus verapamil had none of these effects. No drug combination affected the peak systolic velocity. Patients receiving verapamil had no side-effects but those taking tamoxifen did. In the second study propionyl-l-carnitine and verapamil modified the disease patterns as in the first and no patient had side-effects. CONCLUSION: The combination of propionyl-l-carnitine and verapamil can be considered the therapy of choice for advanced and resistant Peyronie's disease.
********************
I was reading that diphenhydramine citrate is a recommended pharmacological therapies for treatment of scar remodelling along with NASID, this is Advil PM......
Best regards,
Rico
I ran across some of the wonders of Pomegranate Juice. It seems like it may be a helpful (and tasty) way to assist and enhance the work that our L-Arginine supplementation is doing in assisting NO production & effectiveness.
PubMed link: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16626982&query_hl=1&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16626982&query_hl=1&itool=pubmed_docsum)
Opinions or objections, anyone?
Myrddin,
This is a excellent, it is from the Mediterranean and as we know the Mediterranean diet has many health factors....if you google WebMD, you will find studies on pomegranate to thwart off prostate cancer recurrence after surgery....
Also the pycnogenol family or proanthcoyanidins are excellent for circulation and to fight off free radicals...
I buy POM wonderful, it is expensive though....but I mix a little with my other juice....if you are worried about your blood sugar, you can get it in tablet from, I take two a day with my grape seed(OPC), the french maritime bark can be taken also, some blends have them all in one, along with bilberry...all natural....
And for fun.... I make a Pomtini..... lime,potatoe juice(vodka), pomegranate,cointreau liquor .....shaken not stirred...
You can also by the fruit, it is a little messy to eat and hard to find.....
This is great suggestion myrddin, IMHO....
Rico
Myrddin, WOW! This is a fantastic find. Totally synergistic with what many of us are trying to acheive. We always have pomegranate juice on hand, but I have not been using it too complement NO (taking it along with my arginine, goat weed, ginseng, etc.) I find this really exciting! Thanks so much for digging that out and posting it.
- George
You may also find this PubMed article interesting. No doubt it's good news for rabbits with ED. But it makes two statements that sound applicable to us, but among so many medical terms I'm not sure what to conclude:
PJ intake prevented erectile tissue fibrosis in the ED group.
and
Antioxidant therapy may be a useful prophylactic tool for preventing smooth muscle dysfunction and fibrosis in ED.
Perhaps one of you with better medical knowledge can read this study and determine if it's anything we should be happy about.
Article:
Oxidative stress in arteriogenic erectile dysfunction: prophylactic role of antioxidants.:http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15947695&itool=iconabstr&query_hl=1&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15947695&itool=iconabstr&query_hl=1&itool=pubmed_docsum)
Another note: I've read that Pomegranate Juice has been proven to reverse athersclerosis (sp?) over time, which is the buildup of arterial plaque (haven't found the actual study on this yet). Is there a chance it can do the same with Peyronie's plaque? Anyway, it's a tasty and pleasant treatment, so I'm thinking, Why not try it?
Myrddin
I will take pomegranate juice daily and see what happens - it tastes nice!
Thanks for the suggestion.
Today I picked up a tincture of Scutellaria baicalensis from our local herbalist. They assure me it is of good purity - by UK standards (but remember the Titanic) - so I will try it and report. If I fail to report, I suggest that no-one else tries it!
Percival
Agreed, great find. And certainly falls in the "It can't hurt" category.
Anyone know of a way to get PJ relatively cheaply. POM is so frickin' expensive. I'd love to start a daily routine of this stuff but fear it'll end up being more expensive than my viagra. :)
You can buy it in tablets as a supplement, I do take it this way, and I also buy a bottle of POM wonderful each week.....the capsules are fairly inexpensive....
Rico
A great source of general information on supplements can be found here:
http://lpi.oregonstate.edu/infocenter/ (http://lpi.oregonstate.edu/infocenter/)
I found it quite a fascinating store of knowlege all presented in a quite unbiased manner. Enjoy!
- George
If pentox acts as a blood thinner, how can it be taken while one is using the VED for peyronies therapy? Since we know that vitamin E (blood thinner) will give you the red dots on your penis which are not good. Hence is anyone on here taking pentox while using the VED?
ComeBackid, I would suggest that there are perhaps ways of working around this problem. For example in the case of vitamin E. One way in which vitamin E 'thins' the blood is by antagonizing vitamin K which plays a key role in blood clotting. Thus one can significantly reduce the 'blood thinning' effect of vitamin E by taking a small vitamin K2 supplement which enhances clotting. One can also take Rutin which strengthens the capillaries and thus prevents bleeding and bruising due to mild trauma. As for Pentox, I don't know how it 'thins' the blood as there are a number of different things that can cause blood 'thinning'. Vitamin K deficiency, fibrin deficiency, platelet deficiency, specific enzymatic action against clots, etc. So the first step would be to find out how Pentox 'thins' the blood and if and how that can be countered. Perhaps Tim could weigh in on this one.
"we know that vitamin E (blood thinner) will give you the red dots on your penis which are not good. "
Dear ComeBackid,
Please remember that your own experience with "red dots" was *your* experience. It is neither generalizable, nor even necessarily the proper interpretation of events. Application of a slightly higher pressure, or a lack of proper lubrication, etc, could all have contributed to your possible petechiae. But many of us are using 800- 1000 IU of vitamin E a day without any problem with that side effect of the VED.
Tim
Tim and others,
I've been taking pentox now 400mg 3 times per day, I've noticied my penis hangs even bigger when flaccid and feels softer, that hardened scar seems soft for some reason. I've continued to use the VED and have NOT noticed any petechiae, so that is a good thing. I've also been taking a centrum vitamin daily(not the silver kind for old hags :D).
I was just thinking, what evidence is there that pentox will even do anything, as I believe I've gotten lazy and am so desperate for a cure I"ll take anything. I looked up the Dr. Lue study and it seems that only 1 patient saw actual results from pentox, couldn't this of been simply spontaneous resolution? I'm starting to question whether someone is blowing smoke on this drug, but for now I think I will continue taking it as I have seen NO side effects at all whatsoever.
ComeBackid
Thanks for the update ComeBackid. I do not know if Pentox "thins the blood", but I agree with george about the role of Rutin and a multivit (for extra vitamin E). I have taken E for years without problems, and the data about it decreasing survival must be taken in context.
After all the badgering of ComeBackid to go to a urologist, he will be glad to hear that I am going back to one for the first time in about - oh, like, 30 years. Sigh... he has no idea what he is in for. Talk about a patient coming in with an agenda!
My goal will be to get Pentox and Viagra prescribed, and to get help getting it covered by my insurance. My health plan is an enormous one, and I am also one of their primary (specialty) providers too! So I am going to work the "taking care of one of their own" angle, and the multiple disease and "they better treat it before I collapse in a puddle of scar tissue" angle (I will argue that in addition to the Peyronies Disease I have Dupuytrens and maybe the plantar fasciitis thing)(course, I may not have that one - but the arch of my foot hurts a lot). Currently, I take either Cialis or Viagra about every third day, and arginine. I need a good TGF-beta blocker so hopefully Pentox will work. I do wonder about the use of that TGF blocker paste I found a link to - that might be something one could apply locally.
Tim
https://www.peyroniesforum.net/index.php/topic,36.msg6017.html#msg6017
Hi all, its me again, ever exploring new niches, new possibilities. This time its Vitamin C. If you look up Vitamin C on good old wikipedia, you will find that among a number of other essential functions, Vitamin C (which is not really a vitamin in the true sence of the term) has a major role in the healthy formation of collagen. And if you scan over the web for Vitamin C discussion, you will come across Linus Pauling's scorned theory of 'chronic scurvy'. Pauling theorized that many health problems encountered by people today are the direct result of insufficient Vitamin C and its resulting effect on the health of various bodily tissues, especially the vasculatory system. And in fact he asserted that Vitamin C would be useful in the treatment of everything from heart disease to cancer. But basically all that has gotten simply tossed aside by the mainstream medical community, largely because Pauling was not a medical doctor, but rather a famous chemist. So basically he has gotten the same treatment in our day as Pastuer (another famous chemist) was treated to centuries ago. But I am convinced that Pauling's theories make sense. In the process of deciding how to approach this issue, I have come to the realization that it is common knowledge that the average human body can only process around 400mg of Vitamin C per hour. All the rest just gets dumped out in the urine (or the feces if you consume enough of it). So conventional mega-doses make no sense. BUT, there are now available formulations of Vitamin C which release their ascorbic acid payload fairly evenly over a 3 to 8 hour period. So now mega doses of C are finally practical without having to take a pill literally every hour. And so now that is my new addition to my supplement regimin. I am currently taking about 6g of Vitamin C per day at about 6hr intervals (along with copious amounts of L-Lysine). I find this really exciting! We shall see what happens to the tiny little bit of peyronies issue I have left AND we shall also see what additional effect it has on lowering my BP.
I agree on good old vit c...that is why one should snack on good old fruit through out the day....a kiwi here, apple there, not only are you getting many essential vit(vit C), but plenty of fiber..... eating one apple is equivalent to brushing your teeth 500 times....oh and the taste of kiwis and red grapefruits and the list goes on...... the next time you want to pull into the fast food restruant, stop by the grocery and pick up some fruit, I put unsalted almonds(rich in arginine) and walnuts and pecans in baggies along with figs and prunes and grab five pieces of fruit also and put them in my briefcase and head out the door, I not only feel energize all day, but my waist line looks good, more blood flow for the unit:)......
Are concepts are good, but are thinking is like fast food....more pills.....now that I think of it, this is how the medical community is going, hurry up and wait at the doctor and then a blank stare and some pills....Brilliant!!!!!
Oh yes, don't forget your eight glasses of water today:)!! I'm serious.....
Rico....
Just to throw the subject out there for discussion... After letting the disease run it's course, and after trying supplements, etc. for a period of time, why not have the surgery done? What are the risks vs. the benefits? I understand that you can lose length. Wouldn't that be preferable to dealing with the bend? In my case, the bend is enough to make intercourse difficult, and it causes ED, so erections are weak. My plaque is at the base of the shaft, on the bottom, causing a downward, left bend. Anyone have a similar experience (sure... we all do to varying degrees).
George - Why the Lysine?
Tim
Pat,
Surgery is the last chance hotel.....have you tried VED?...... take a few looks at the surgery photos.....even the medical knife happy crew doesn't go this route if they don't have to..... I would take a step back and look at your other options....Ved and some meds...or VED alone and some supplements....
Rico
George999,
I agree with you on complex arginine mix.... ornithine and arginine mixed with lysine is pretty common on the body building circuit..... lysine is especially usefull for the non dairy people.....it also is know for it calcium absorbsion.... for the heck of it, I took some regular L-arginine with just a touch of glutamine in it....and I could tell a much less nitric oxide result than when I used the other blend I was taking, you get what you pay for:)..... I found I get a huge pump from l-arginine hci, arginine alpha ketoglutarate, ornithine alpha ketoglutarate, arginine ketoisokaproate and a tri-glutamine complex , l-glutamine, l-glutamine alpha ketoglutarate, n-acety-l-glutamine...
plus l-taurine....I just cycled off this for ten days..... I'm going to go back on here soon for six weeks.... I get plenty of lysine in my diet.....I see that you are taking large amounts and stated your peyronies is almost gone....
That is great news and I'm all ears:)..... please can you give your condition and results and your reasoning behind this amazing feat.....I'm sure I'm not the only one who is curious:).....
Listen...you can hear a pin drop.... please do tell Sir...
Rico
Tim, Actually I'm doing the L-Lysine as part of the hypertension routine. According to Pauling the chemist, most of the garbage that clogs the vascular system and invades the aterial walls is basically disolved away and mobilized by Lysine, since Lysine binds to a key receptor that enables the stuff to stick to and in the arterial walls. The theory is basically rejected by mainstream practitioners, but Lysine is inexpensive and very safe, so I'm giving it a good shot. I not sure what if anything it has to do with Peyronies, but I do think there might be interesting connections between Vitamin C and Peyronies, and thats why I posted what I did. I also think that the recent appearance of the time-release form of Vitamin C presents interesting opportunities. The Lysine part was just sort of an aside to that.
Pauling's theory was that people tend to have poor diets getting insufficient Vitamin C, which starts a degenerative cycle. By the time they get their diets straightened out in an attempt to fix the problem, even an extremely healthy diet laden with fresh fruits and vegetables will not provide enough Vitamin C to support repair of the previously induced damage. Interesting theory rejected by the medical establishment, but I suspect the old man was on to something and I am giving it a shot. Personally, rather than wallow in self pity over my afflictions, I prefer not to leave any stone unturned in my search for better health. I even find it fun and challenging, even though it involves choking down lots of pills. Detractors not withstanding, I somehow suspect the right combination of nutrients can have a major positive impact on our bodies.
One of Pauling's contentions, by the way, was that most animals don't tend to suffer anywhere near the level of cardio-vascular disease that we humans do. And a key difference between them and us is that they are capable of generating huge amounts of Vitamin C in their animal bodies via internal synthesis. We humans have zero capability of generating Vitamin C and are totally dependent on dietary intake.
Pat
Before you consider surgery you can read about some of the outcomes on this site - see resource library. It depends on the type of surgery, and of course the surgeon, but ED is fairly common afterwards. I suggest you exhaust all other options before taking this route.
Percival
Rico, I have to tell you that if I could name one thing that has helped me more than anything else with my Peyronies, it has been the full spectrum vitamin E. I know I'm going to get a tounge lashing from ComeBackid on this, but seriously, once I got off the synthetic E and on to the premium stuff I could really see the effect. But who knows, Peyronies is different for each person. In some cases it just seems to spontaneously go away, so I can't for sure say what it was that really helped me. But the best progress came with the switch in Vitamin E, before I started on all the other stuff I am taking. So, as I told you in the private message, after 29 months with Peyronies, I am now nearly free of it. Its not completely gone, but I can't really feel the plaque itself anymore and the slight band that is left is so improved it no longer acts as a hinge and so I am not reinjuring it all the time and the inflamation is gone completely. So I just thank God for his mercy in my case. Like I say, it is not gone completely, but it is no longer a problem in any sense and I am very grateful for that. And I am still working on making it better. I do have a lump in a completely different location down on the side of the shaft that developed later, which seems Peyronies like, but doesn't cause any deformation with erections. It would be nice if that would go away also. I also have a curious little scar on the back of my hand that developed right after the Peyronies, but it too is practically gone now.
George I love these stories....a Victory Lap is in order or mayb a Victory Pump tonight:)....
There is hope...and you are so knowledgeable on supplements and seem to have taken the bull by the horn(another one for Liam:)....sort to speak, with a angle on health and nutrition...interesting....I have been looking at a full spectrum E for sometime at GNC and will give it a go....but really my three prong approach is 1. diet 2. exercise 3. VED/thacker formula I don't know if I need the dmso/apple cider/castor oil I just don't see how it can hurt me....
Rico
I am 27 yrs old and recently got diagnosed with Peyronies Disease. My urologist precribed colchicine(sp?). Unfortunately, I wasn't exactly honest with him about how much I drink. Apparently, colchicine and alcohol do not mix (apparently, this combo can cause "gastrointestinal toxicity"; I'll pass on that). I'd rather not have to quit drinking, but do I have a choice? I also don't want the Peyronies Disease to get worse. Any suggestions? Are there alternative drugs that I may be able to drink with. I know it's pitiful, but it's a dilemma I'll have to face one way or the other.
I currently take 500mg of GNC L-Arginine twice daily, is that enough? I should note that I don't have ED. I also take GNC Mega Men Sport vitamins, GNC Natural E 400 (1 softgel daily), and GNC Acetyl-L-Carnitine (1g twice daily), all with food.
Dear Whattodo:
Just an observation. If you are willing to compromise the health of your penis (and presumably sex life) in order to keep on drinking, then that suggests that you have a drinking problem. Addiction versus habits or suchlike can often be differentiated by a couple of features. First, they harm us, and secondly, we are unable to stop them when we want to. It might be worth it to examine your thoughts about the value of alcohol in your life, such that you are asking for a way to avoid a medication, or to find one that is compatible with alcohol.
That said and done, I might add that colchicine has had a variety of reports (but few here) on how good it is. In general, it seems to have some side effects and to not get impressive results. However, it does make sense to try in some situations. Perhaps your doctor had a reason for prescribing it.
What counts is that you are trying to get better. All of us are working on that - stick around and I am sure that you will find something that will help you.
Tim
Well, you hit the nail on the head there. Obviously, alcohol plays a larger part in my life than it should. I don't need anybody to tell me that. Maybe this situation is what I need.
Here is some interesting research on Vitamin C. I found it quite interesting and hope that some of you will as well:
http://lpi.oregonstate.edu/news/vitc_lipid.html
Also, note this about Vitamin E:
http://oregonstate.edu/dept/ncs/newsarch/2004/Jan04/cereal.htm
Perhaps it might explain why Vitamin E supplements are not working for some people.
Whatitdo,
Just being a recent college grade myself I was headed down the path of drinking to much, its amazing, I started taking acetyl l carnitine to treat peyronies and my urge to drink vanished. I then later found a study that I can't currently find but will look for that said it can help people stop alcohol addictions. If I find it I will post it for everyone to see but can't make any promises. Acetyl L Carnitine can't hurt you and is a peyronies treatment, I'd get on that it may help with your drinking, I know what its like to want to buy a 40 or six pack and race back to ones dorm to start drinking, and do this 3 days a week, however my friends were worse than me, I suppose this was a college phase as I haven't drank in months. Check out the ALC.
Misterb,
I take 500mg of L Arginine twice daily, you could probably take 1000mg or even 1500mg twice daily if you wanted, I think some people here are on much more than myself.
ComeBackid
As guidance for the amount of L-arginine, among a slew of references posted by George a while back, is this one, reporting of the use of L-arginine and pycnogenol for ED (see George's post no 691):
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12851125&query_hl=1&itool=pubmed_DocSum
• Stanislavov R,
• Nikolova V.
Seminological Laboratory SBALAG, Maichin Dom, Sofia, Bulgaria. rstanik@abv.bg
Penile erection requires the relaxation of the cavernous smooth muscle, which is triggered by nitric oxide (NO). We investigated the possibility of overcoming erectile dysfunction (ED) by increasing the amounts of endogenous NO. For this purpose, we orally administered Pycnogenol, because it is known to increase production of NO by nitric oxide syntase together with L-arginine as substrate for this enzyme. The study included 40 men, aged 25-45 years, without confirmed organic erectile dysfunction. Throughout the 3-month trial period, patients received 3 ampoules Sargenor a day, a drinkable solution of the dipeptide arginyl aspartate (equivalent to 1.7 g L-arginine per day). During the second month, patients were additionally supplemented with 40 mg Pycnogenol two times per day; during the third month, the daily dosage was increased to three 40-mg Pycnogenol tablets. We obtained a sexual function questionnaire and a sexual activity diary from each patient. After 1 month of treatment with L-arginine, a statistically nonsignificant number of 2 patients (5%) experienced a normal erection. Treatment with a combination of L-arginine and Pycnogenol for the following month increased the number of men with restored sexual ability to 80%. Finally, after the third month of treatment, 92.5% of the men experienced a normal erection. We conclude that oral administration of L-arginine in combination with Pycnogenol causes a significant improvement in sexual function in men with ED without any side effects.
I have been taking pycnogenol with arginine....I use to take OPC which was a powder forum mix...billberry, grapes seed and pine bark, great for circulation...many health benefits....
I cycled off the mix blend of xyience I was using (NOX-CG3)...it does have creatine in it.... I will say that as far as erections go, this stuff really works and fast.... better than when I have been mixing just L-arginine with pycnogenol....
I really believe in pycnogenol and eating a lot of fruit, my plaque is shrinking right now:).... I will post more on this later....
I have a business call that just came in....
Rico
Associates of Linus Pauling that champion his findings recommend vitamin C and Lysine since this combination is the major building blocks of collagen. They also often recommend C-Ester not to be confused with Ester C. C-Ester is both oil/water soluble and is theorized to have greater tissue availability. The theory advanced for heart disease is that damaged arterial walls develop plaque build-up in an attempt to repair micro damage. This is a short term fix that becomes a long -term problem. C and L-lysine are thought to repair and prevent damage and stop plaque deposits. This combo is also supposed to slow or prevent cancer spread by interfering with the cancer enzyme that breaks down collagen to migrate through blood vessels allowing the cancer to metastasized to other body areas.
The problem is that I have read that at least a few doctors suspect that this collagen boost from C/L-lysine, will contribute to the production of the the collagen that is the building block of Peyronies Disease scare tissue. I can say that I was on large divided doses of l-lysine and vitamin C when I developed Peyronies Disease. I was also on 600 IU of all natural mixed tocopherol Vitamin E which did nothing to prevent or stop this process of Peyronies Disease as far as I can tell.
I make no claim for the value of C/L-lysine and none for the c/lysine contribution to Peyronies Disease. I am only sharing my limited information.
A foot note is that within the last 2 years, it has been demonstrated that doses of vitamin C over 500 mg daily can significantly worsen osteoarthritis. Mine did worsen both by personal observation and bone scan data. The same findings indicate that vitamin C helps rheumatoid arthritis.
Hawk,
That was a good post on C and Lysine, It may seem to mega dose anything can throw you off balance.... but to supplement might make more sense....
George I did pick up some ISOMER E tm at gnc, it is there brand...it is the total tocopherols blend plus toco-rich.... 24.99 for 60 tablets....
I also pick up two new cans of my xyience NOX CG3 I will go on another six week cycle..... I have been cycling off for 10 days.... I did pick up some L-arginine and try them with pycnogenol, but I wasn't getting the same effect...it might be the delivery system also, the xyience is powder forum and assimilates quickly....or maybe I haven't been in much of a sex mood either??
I don't want to jump over to the dmso thread, since my ved, supplements and dmso I'm doing together....my plaque has shrunk...just started to this week...in about half...it was on the dorsal...I have been doing a drip of dmso on top of it for about a month or so....my unit is use to the dmso, it doesn't burn it anymore....I went and picked up two more bottles today, but they didn't have the 99.9, so I had to get the 90% and I also picked up msm cream and dmso/aloe cream 70/30%....the msm supposes to go through the skin with lipsome(sp), someone else has been using it on the forum....
My unit is looking good flaccid, and plaque has shrunk some, I haven't gotten a real erection lately, not thinking about sex right now....I have been pumping and dripping dmso and working and exercising, but I feel good with the plaque shrinking, anyway I will keep all updated...I feel I have this on the ropes now and I'm going to pound it hard, don't grab the neck tie, but the throat!!!!!
Rico
Pycnogenol promotes collagen synthesis. Wouldn't that be a bad thing for us?
misterb,
It is the combination of c and lysine that may boost collagen.....not pycnogenols....I wouldn't load up on lysine and c myself....supplement means supplement....your daily needs....pycnogenols are great for you....blueberries, bilberries, grape seed or red wine extract, or red wine:).... french maritime pine bark....great for circulation....to me it is like taking ornithine with arginine a precursor or enhancer of the effect...it is why I believe the blends on the market for body builders work so well, science behind them, years of research and trial and error...I read the post from the bodybuilders on forums who like this forum have no affiliation to the companies, plus from my own experience...George knows his stuff and does some research and I do listen, but you have to remember we throw things out to be looked at by more than one pair of eyes....such as Hawk's educated thoughts on the last thoughts on lysine and c...this is a think tank....take what you can and add to it for all of us to share....we need young quick minds also to post like yours.....
Take care and keep reading....
Rico
I think you will find two conflicting perspectives here on this forum concerning collagen synthesis. One perspective is that anything that promotes collagen is bad, because collagen is the root of the problem with peyronies. The other perspective, which is the one that I personally ascribe to, is that collagen synthesis is not a bad thing since it is a normal and major human biological function. The problem as I see it is that something has gone wrong with the normal collagen sythesis process. And that could just as easily be too little collagen synthesis as too much. Collagen is a major building block for virtually all types of tissue. Its the combination of collagen and elastin that virtually hold all our body tissues together. And all of those tissues are constantly rebuilding themselves through a process known as collagen turnover (tissue remodeling). That is a major component of the continual healing process that goes on in the body. Collagen is also a major problem in the case of cardio vascular disease and yet you will find people who swear they were cured via Pauling's collagen enhancing therapy. So I would submit at this point that this is an open question and each person on this forum needs to consider all of the input on both sides of the issue and make a choice. But the bottom line then becomes that every supplement mentioned on this forum carries some sort of risk potential. It is up to you folks as individuals to make the decisions as to which risks you are willing to accept and which you are not. As for me, I am doing a lot of stuff for both my peyronies (which is almost gone) and my hypertension (which is very alive and active). What I am not going to do is sit around and do nothing. - George
I would certainly agree that large doses of Vitamin C can be bad in a number of ways. The problem in the case of Vitamin C is that the human body can only process a certain amount of it in a given period of time. The rest is waste in the form of elevated levels of ascorbic acid floating around in the bloodstream that the kidneys do their best to dispose of. The solution as I see it, as I have previously expressed, is a time release form of C that makes sure that blood levels of C are limited to a healthy level so that the C can be assimilated and so that it does not end up actually doing damage instead of providing benefit. Conventional Vitamin C passes throught the body very quickly. It goes from the stomach to the bloodstream to the bladder to the toilet. I believe that time or sustained release formulations are a far better way of delivering Vitamin C. If there is a study out showing Vitmain C-Ester to be significantly more assimilatable that convenal C, I would like to see a link for that.
Vitamin E has its own unique issues. There is at least some evidence that most of the routine Vitamin E supplementation that people are doing is ending up going right down the toilet bowel as well. So if a particular supplement is not working, before we throw the baby out with the bathwater, we have to ask "Is my body even assimilating the stuff I am taking, and if not, why not?". Similarly, if a supplement is making things worse, you had better stop taking the supplement, thats a given. But you also have to ask, what else might be wrong with my body that is causing that reaction. Initially, for example, I got a terrible reaction to L-Arginine. I quite it and talked to a doctor about it. I was basically told, just don't take anymore of it. So I went to another doctor who felt she knew what the problem was and medicated me at a very low level for that problem. Now I am taking twice as much L-Arginine as what was causing me a problem before and now I no longer have the problem with it. So my point is, many of these issues are extremely complex, and thats why most doctors don't like to deal with them. But I am willing to take calculated risks. I am allergic to sulfa (people die from that, by the way). People who are allergic to sulfa aren't supposed to take thiazide. But I am cautiously taking thiazide because I respect its capabilities. I'm willing to take the risk to receive the potential benefit. Thats the bottom line when it comes to drugs and supplements.
There are a lot of differing opinions on all of these various supplements being voiced here on this forum and this amounts to a healthy discussion. We each have a unique perspective and experience and are all trying to articulate our concerns as best we can. It is then up to the reader to consider all the different viewpoints, discuss the issues with your trusted healthcare providers and make a decision as to an appropriate course of treatment. There are a lot of options and a lot of substances and techniques with potential benefits. What works for one person may not work for another. But the important thing is that you start from here, follow through with your own personal research and professional consultations and take a course of action. And if that isn't working, make some modifications in your regimin until you start to see results. Personally, I am seeing the results, but I'm not going to give up here. I'm going to keep going until my health problems are resolved.
I agree with both perspectives. Collagen synthesis is indeed a necessary biological function, but it's not been good to the penises attached to those of us on this forum. I had not even heard of pycnogenol until Rico's post earlier today and I decided to look into it. During that research, I came across this statement:
The anti-ageing properties of pycnogenol are well known in Europe, where it is considered a cosmetic in a tablet and is referred to as the 'youth nutrient'. It binds to and reactivates damaged collagen in the skin.
and I didn't like the part about collagen being reactivated, damaged or otherwise, so I thought I would mention it. I'm trying to come up with the best possible combination of supplements for me to take and growing more confused by the minute. I don't have access to a professional to discuss this with until I find another urologist, the only one I've seen so far doesn't subscribe to any theories other than surgical correction and my goal is to prevent that from ever becoming necessary. So in the meantime, I only have this forum and internet research to go by in making a determination. Thankfully there's lots of good info here and I believe I'm heading in the right direction.
Hey guys, aren't there some good doctors out here on the west coast that misterb might look into? I think I've seen the names of some top research/medical school/center urologists go by on this forum who definately go with non-surgical stuff like pentox etc. Can't anybody come up with some potential good connections for misterb?
George, I really need someone closer to my home here on the eastern side of the country so I can have the benefit of follow-up visits. I can't afford many trips out west. Thanks.
Forum members,
Sometimes I wonder if we can over think collagen...not that is a bad thing to think:)..... and I know there are different levels of peyronies, the "A" typical injury with scar tissue or plaque that replaces the spot of tissue in the tunica which also replaces it's elastic properties...hence a bent unit....
Now this is really a normal process of the body to replace a injured area with scar tissue....if this was on your ass your wouldn't even think about it, and once it is stable, or they say 90% developed in the first six weeks...it is all a moot point what ones does as far as prevention of scar tissue....how to soften or dissolve it and then the what seems to be the hardest thing to do is bring back the elastic properties of the tissue...
Once the tear or hole is plugged up, it is done....
Now the other forum of peyronies where your whole tunica is attacked is a vascular or immune disorder....it's seems a much smaller but also a much needed case to be looked at, and very important to figure out where you are at, so you can the proper steps to recovery, one size does not fit all.....take two Vitiamin E's and call me in the morning has to change as the Urologist battle cry!!
Rico
Rico,
You have made a few statements that if true, are different than information I currently have and would constitute a new understanding of Peyronies Disease. I am interested in your evidence.
1. Several statements such as; Pentox is really a wicked or risky drug. What is this based on? What drugs are you comparing it to?
2. You often refer to Type "A" typical Peyronies Disease. I know of no confirmation of a type A, B or any other verifiable separate types of Peyronies Disease. Some of us speculate that Peyronies Disease varies in type instead of variations in degree or course of progress, but I know of NO body of evidence that establishes this much less identifies the types. I also have a very different understanding of Peyronies Disease from an injury than the one you present. You suggest Peyronies Disease from an injury is normal scaring that patches the hole and stops. That would not be Peyronies Disease in any form as I understand Peyronie's. It would be normal wound healing. If I can make a loose analogy with a keloid, a keloid may start with an injury but it does not patch a hole and stop. It overruns normal, healthy, uninjured, tissue. In fact if you look at the picture of scaring from a hair follicle in the "Resource section" you will see that what was triggered by one follicle overran the entire chest with scar tissue. https://www.peyroniesforum.net/index.php/topic,155.msg1364.html#msg1364 click on the attachment in document 2 0f 3 and look at the photos. In my own case, scar tissue that started from injections in the base of the penis have caused scar tissue several inches away in the last 1/4 of the shaft over a year after injections were discontinued. You also indicate the "other type" of Peyronies Disease is a vascular disease. I have never heard this before from anyone and I am very interested in your reference for this.
When I hear new things, I am always interested in whether someone has new information i have missed of if they are making assumptions without making it real clear.
Have you ever thought of calling the office of one of these well known guys out here and asking if they can REFER you to someone back east who might be lesser known, but might be following the lead of one of these top guys out west here? Just a thought.
George, the guy I already went to is supposedly one of the best in the whole country and judging from his knowledge and professionalism, I'd have to agree. That's why I was so discouraged by his opinion that non-surgical treatments don't work. It's tough hearing that from one of the top guys in the field. The fact that I already have this at a young age makes me extremely worried for the future, so I'm intent on taking action now to try to head this thing off at the pass, so to speak. I'd certainly be willing to give it a shot. If you know who is leading the way out there as far as non-surgical treatments, please post here or PM me and I'll get in touch with them. I appreciate all the help and encouragement I've received here. Thanks, guys.
Hawk,
I agree with you that I shouldn't just shoot off without facts...I think I was talking to Tim about trying a better approach and giving hisself some self care, and maybe trying OPC, which is great for circulation....I know Pentoxifylline changes the shape of red blood cells in your blood, allowing them to open up your veins and improves your circulation....I said, this stuff is nasty.....to me if you can do this with a more natural product and get the same results...it just seems less intrusive to ones over all health...
My Urologist told me I had "A" typical peyronies, this is where I came up with this...plus when I look at the "A" typical pictures this is what I see....Plaque on dorsal....
Dr. Levine states that there are two kinds of peyronies and says one which is more of a injury and the other is vascular condition which attacks the whole tunica....
When a scar is developed it always adds more scar tissue than it needs to repair the scar....a 1.6cm will be 3cm....now if it just keeps going, then the inflammation isn't turned off, maybe a immune disorder, underlying problems....
If someone has a 90 degree candy cane..or a downward bend or 75 degrees...or a total hard tunica that has cause ED....or a left bend of only 5 degrees, or a hour glass that buckles...or lost of 3 inches when he had only 4 to start with...too me these are different in some degree of the condition....I might think that if a doctor had a patient that came in with serve pain and a 90 degree bend, he might put him on something to stop the pain, maybe pentox works for this....or the combination or arginine/pentox/viagra.....
I not going to metion names and believe me, I want wellness for everyone on here, but I feel some are taking more drugs than they need....I feel Dr. Tim is a giver like I wrote to him, and he was thinking of pentox...I was talking to him, I feel I have got to know him on here....I just felt he should go more of a natural route, total wellness....take some Tim time, quit giving and start taking a little for himself and not medicate the condition, but look at a more of a total life style change....OPC's are wonderful and natural way to increase circulation...and they Might just be as good as Pentox...without any side effects...just giving someone a choice.....
I have never had pain with my peyronies, I read about some that have lots of pain.....I guess I feel to some degree the way ones treats his condition of peyronies would be different...this is my opinion....if I didn't have lost of size, I wouldn't be too concern with my peyronies, the plaque seems to be getting smaller, no pain, and slight upward curve, might hit the G spot perfect now:)... but the lost of two inches...I would be happy with one back....so this is what my goal is....so I took a step to the left and adjust for my condition...VED seems to be the best option....pentox or the other drugs will not bring back lost size....
So I would like to say again that when I said Pentox is nasty....it might be the drug for some...it is no magic pill for all peyronies....it wouldn't be my choice for circulation improvement...It wasn't a very good thing for me to say in that loose way....
Do I feel there are several forms of peyronies, I feel that all are condition to some degree are in several different stages and shapes and need to be address accordingly....
Thank you for bringing to my attention about my Pentox comment, it wasn't the right way to express it and I wouldn't want to miss lead anyone on this treatment....and I have never taken it...or know anyone who has...
Best regards,
Rico
misterb, I seem to remember reading good reviews about this guy, perhaps someone else here can comment.
http://urology.ucsf.edu/faculty/facLue.html
Anyone around know how he is on non-surgical approaches? He is supposed to be very innovative. Perhaps he knows someone in your area who could help you. Wishing you the best.
- George
Before my doctor would prescribe me pentox he investigated it and read about it, looking out for my best interests. He confirmed to me that pentox is a very safe drug to take, thus far taking it I have seen absolutely no side effects. I have noticied my penis is more "fuller," in the flaccid state, and seems to be more elastic. My Dr. confirmed that it will allow the blood to soak into the tissues better, thus increasing oxygenation. I have not studied the details of exactly what it does and how it effects blood cells and tissue, but I must say I've been happy so far taking this drug. I currently take 400mg 3 times daily with food.
ComeBackid
ComeBackid,
What did you doctor say about the mixing of trazedone you are taking with pentox? Does he know you are taking this also? Are you taking viagra also? I think you take alc and arginine...just curious if he has had anyone who is taking pentox with trazedone....
Best regards,
Rico
Rico,
He is well aware I'm on trazodone and pentox since he prescribed both. He told me they both work by different mechanisms and it wouldn't be a problem to take both at the same time, remember I am on a 25mg dosage at night of trazodone, a very small amount. Yes your correct I also take ALC and L arginine, but I may cut out the ALC, have been on it for 5 months and it has not helped my curve, it did take pain away at the beginning of that 5 months, thats why I continue to take it.
ComeBackid
ComeBackid,
I was just wondering, I figure he prescribe both, I know they are mixing pentox/arginine/viagra..... are you doing viagra? I'm trying to get my arms around there thought on these drugs mixed together, they all seem to be somewhat along the same path, circulation....and maybe antifibro...
I know you bought the dmso and acv and castor, are you doing this also and how is your VED doing?
I hope all is well with you....take care..
Rico
Rico,
I am not using thackers, I just tried it out one day, I did not get garlic breath at all like almost everyone told me I would, however I'm still not convinced thackers formula is totally safe. We don't have much data on it or know anything about it, plus I have a very unique scar inside of me, its not really a plaque, its hardened, I'm going to get an ultra sound to first see if its a calcification or not, then go from there.
I'm not currently taking viagra either, I don't have $300 and some odd dollars per month, and I can't get coverage through my insurance. I've been taking ALC for five months, it did nothing except take away pain and I can't even say for sure it did that, I may drop it soon. I'm taking the pentox, trazodone, L Arginine, and doing the VED daily. The pentox definately made a difference as soon as I started taking it, it seems to give me back some lost size in the flaccid state, it also seems to take away that hardness in my penis, its been deemed safe by many doctors. In regards to viagra, I'm sure it couldn't hurt, if you read the Ask the Doctor section on the APDA site you will see Dr. Levine says none of his patients got worse while taking it, and the NO acts as an anti - fibrotic drug as Tim has been saying. I think L Arginine, Pentox, and Viagra would be an excellent protocol, especially since no one else has anything better to offer. If I could afford the viagra I would take it, although I would not take viagra with trazodone at the same time.
ComeBackid
Dear forum members...
www.siberiantigernaturals.com is one site that has some good information on oils....I have really boosted my omega three(fish oil).... and I use a lot of Olive oil daily...up to a 1/4 cup.... I dip all my veggies bread and make my own salad dressing.... omega three(fish oil) not only increases your circulation but it also thought to break down fibrin(scar tissue)...it is great for over all heart health.....this is one supplement I feel is something everyone should be looking at and putting into your diet....when you go to this site, click on omega three also... very good read...
Rico
Rico,
Thanks for your reply and clarification. I want to address a few of your responses on this important topic. I am probably in the top 1% in use of natural foods, organic, exercise, and nutrients, but fair is fair.
Quote from: Rico on September 23, 2006, 12:22:37 AM
Hawk,
..I know Pentoxifylline changes the shape of red blood cells in your blood, allowing them to open up your veins and improves your circulation....I said, this stuff is nasty.....to me if you can do this with a more natural product and get the same results..
Ricco, opium is natural, as is weed, peyote cactus, as are many health store products that have done great harm. We can not assume "natural is good and "drugs" are nasty, especially since the dividing line is pretty blurred. People in 28 states are in the hospital from spinach.
Quote
My Urologist told me I had "A" typical peyronies, this is where I came up with this...plus when I look at the "A" typical pictures this is what I see....Plaque on dorsal....
Ricco, I think there is some miscommunication here. Rather than labeling Peyronie's Disease into types, "A", "B", etc (which I have never heard of) I am sure that your doctor actually said you have an atypical case of Peyronie's Disease. The dictionary defines the word
atypical as: unusual or irregular. In other words he was saying, "Your Peyronie's is not typical for this disease" rather than saying it is typical type "A" I have often heard of atypical Peyronie's. I have never heard of "A" typical Peyronie's. If anyone knows of any such recognized classification please post a direct quote and a link.
QuoteI feel some are taking more drugs than they need....
Rico, you can feel that way or even post that you
feel that way. Keep in mind that those people are under the care of a trained prescribing physician that
thinks they are NOT taking more drugs than they need. We all post opinions here are are welcome to do so but it should be very clear if we are speaking from medical training, other evidence, or just general feelings.
QuoteSo I would like to say again that when I said Pentox is nasty....it might be the drug for some...it is no magic pill for all peyronies....it wouldn't be my choice for circulation improvement...It wasn't a very good thing for me to say in that loose way....thank you for bringing to my attention about my Pentox comment, it wasn't the right way to express it and I wouldn't want to miss lead anyone on this treatment....and I have never taken it...or know anyone who has...
Thanks for this clarification. It is so important, especially since you post so frequently. I wanted to know if you had information I did not have. Since you got my attention I would guess many "members and guests" thought you had real information on the dangers of Pentox. Now that you make it clear that they are opinions based on no studies, no reports from others, and no personal experience, it clarifies things for me and hopefully others. We can conclude that there is no evidence that Pentox is any more "nasty" than any of the many thousands of prescription drugs, over-the counter drugs, devices, and many natural substances.
Hang in there and good luck in your continuing search.
Hawk,
I will say that my first thoughts on pentox were here is another drug like colchicine or potaba, and I guess if you have to take something that is going to turn your stomach or make you live in the bathroom..then I feel it is nasty...I have heard many comments on these two drugs..and my doctor told me I probally wouldn't be able to stomach potaba.....it was wrong to jump to the same conclusion with pentox...maybe the name pentoxifylline just didn't sound like something I wanted to eat:)....
Maybe pentox/arginine/Viagra is something to look at....I know they stumbled on Viagra looking for high blood pressure and all of a sudden these college kids started to get erection....more of a pragmatic approach to peyronies....hit and miss...and I will say that if I had extreme pain and curve, this would be a choice I would look at with alc.....maybe alc and arginine first...if my doctor would of told me with confidence that this or any combo was a good try, I would of try it....well I take that back, he said if your stomach could take it, he would try potaba, I declined....
I will add too that I'm putting dmso/avc/Castor oil on my unit everyday...talk about out there...that is not natural at all...so I have no room to be judgemental on one's choice of treatment....
When my doctor told me I had a atypical case of peyronies, I looked at him and said, why is it usual? He said, no it is normal....or the way most peyronies patience have there plaque.....it is somewhat of a oxy moron...in the medical field when they describe cancerous cells they say atypical, meaning unusual for regular cells, atypical case is a case of usual peyronies...if that makes any sense:).....
I can sum up peyronies in one catergory for all... "It Sucks" !
I do feel that the mechanical approach with some sort of medicine to soften the plaque or reduce it and mechanically remolding the plaque has a chance to help many of us....we need to explore and hedge are bet on recovery as much as possible....I like this think tank, don't leave a rock unturned.....plus what might not work for someone, might be the answer for someone else....
Well I making some halibut, salad with lots of Olive oil and brown rice....and a fruit compote" bon appetite'
Rico
Dear forum members and guest:
I was trying to find information on pentox and mixing it with Viagra and the possible benefits....
The article I was reading "Types of medical therapy available to manage Erectile Dysfunction".......Here were three of the choices...
1. Sildenafil (Viagra)
2.Trazondone (Desyrel)
3. Trental (Pentoxifylline)
75% 50% 25% effective respectively.....
So you should get a erection about 150% of the time if you take all three...and hell throw in some arginine and you can use it to chop wood:)...
Everything I read about Viagra it says you shouldn't take everyday? But they do suggest Trazondone and Trental should be taken everyday and can all be taken together....
I guess it is all about blood flow...circulation heals.....it seems it Might be a way to stabilize a condition vs resolving the issue of the plaque...stop the inflammation....which would stop the pain...and with less inflammation...less curve....
The Viagra has me confused though, because of the need for stimulation and the four hour period of window opportunity....to take on daily basis when the company says not to take it daily???
Best regards,
Rico
There are more recent studies indicating benefit from Viagra daily. There was at least one commissioned by, you got it, ..... Pfizer.
Liam
Liam,
You are correct again....I did just down loaded the most recent report(june 2006) by Pfizer....now they didn't say in it that taking it was beneficial everyday, but they said that one should not take more than the recommend dose for your ED condition 25, 50 or 100 mg.....per day.
It did say to have caution if you have Peyronies with using this drug.....
It it interesting to me that the drugs they shy away from for peyronies(ED Meds) are now the ones that seem to be the most promising...and VED is also a ED remedy.....or I should say a solution...for VED or Viagra doesn't cure but allows one to perform.....
I believe the Old Man was doing the VED for ED and he found it helped his peyronies.....correct me Old Man if I'm wrong...
There are two types of scientist or inventors in my book.... the pragmatic types and the formula driven types....I see that in personalities on this forum also....and I do believe they compliment each other....Albert Einstein was a formula driven person....Thomas Edison was pragmatic.....
The drugs they were using...colchicine, potaba and verapamil.....seem to be drugs of the formula driven...and now through trial and error and circumstance the pentox, trazdone, Viagra arginine are taking the lead....along with VED.... Once again all that were shun for peyronies patience..... maybe the cure or better results for the condition where there all the time???? The VED in itself(now for a short period of using it...10 days), I can tell is something one has to be very careful with, slow and steady is the word.....
Scar tissue does have blood flow, much less than regular tissue and the tunica is known to be low in blood also.....petox reduces ones red blood cells in size so in essence they become more slippery like and flow easier through ones system, especially where the vessel are small, like in the penis....Viagra being a vacillator and trazdone working on this principle but on a lesser matter....arginine also....my thought to why they have the mix is to give a more prominent effect with the viagra, but because it only last for about four hours to enhance this with the pentox which will last all day and come at it from a somewhat different approach(reducing of red cells).... the arginine is taken to supplements the same effects of the Viagra when you are awake and you take during the day....so you are getting a 24/7 circulation improvement....which should help promote healing....
Now if one would start doing core training or over all health and taking OPC's and a general good diet along with VED exercising, one might be able to gain more conditioning reversal of peyronies...
From a scar healing or remolding stand, this approach now makes sense to me....dmso has been reported to cause vacillation also...but I would think for short peroids......I guess it comes down to each case and what we feel comfortable with.....
I really wouldn't be surprise now if the Urologist will be saying to patience in the future the opposite to what they have said yesterday....if you have peyronies...treat is as you had ED.......
Best regards,
Rico
Rico: >>Scar tissue does have blood flow, much less than regular tissue and the tunica is known to be low in blood also.....petox reduces ones red blood cells in size so in essence they become more slippery like and flow easier through ones system, especially where the vessel are small, like in the penis....Viagra being a vacillator and trazdone working on this principle but on a lesser matter....arginine also....my thought to why they have the mix is to give a more prominent effect with the viagra, but because it only last for about four hours to enhance this with the pentox which will last all day and come at it from a somewhat different approach(reducing of red cells).... the arginine is taken to supplements the same effects of the Viagra when you are awake and you take during the day....so you are getting a 24/7 circulation improvement....which should help promote healing....
<<
Fascinating stuff... Rico, many of the assertions in your post are correct - for instance, pentox does affect red cell deformitbility and blood viscosity (at least after transfusion it does - but that blood has EDTA added... but I digress). My point is that although some of these facts are correct, I do not believe that you are putting the facts together properly. Also, some of the facts are basicly incorrect too (like blood vessel size in the penis - the vessels that go through the tunica that drain the corpus cavernosum (CC) are not smaller - but they are pinched off during erection which allows the trapping of blood in the sinusiods that form the CC.
The reason that pentox is used is to allow it to block the effects of Transforming Growth Factor BEta (TGF-B). The reason that Viagra is used is to promote the iNOS pathways that exert an anti-inflamatory effect - NOT to promote blood flow. Similarly, arginine is an NO donor to facilitate an anti-inflammatory effect. The rationale behind the uses of thes drugs is carefully delineated in the discussions in the articles that intorduced them into the clinical literature of Peyronies Disease. I will append two such discussions here.
We spend a lot of time focused here on blood flow. I think it is vitally important, but addressing that issue (blood flow) is NOT the rationale behind pentox/viagra/arginine therapy. Talking about blood flow is fine, but I wuld like those who come to this web site to know what the rationales actually are that are used by the scientists doing this work. Two such discussions regarding this is hereby included:
*****************
Article by Brant and Lue.
Discussion:
Pentoxifylline has been used in humans (in divided doses of 800–1600 mg per day) in a variety of inflammatory and fibrotic conditions, including radiation fibrosis,9–11 radiation proctitis,12 cystic fibrosis, radiation pneumonitis, steatohepatitis,13 epidural fibrosis,14 and osteoradionecrosis.15 Our dosage is derived from these other uses of pentoxifylline. The mechanism is not fully known; pentoxifylline blocks the transforming growth factor (TGF)-β1-mediated pathway of inflammation, prevents deposition of collagen type I, and acts as a nonspecific PHOSPHODIESTERASE (PDE)
INHIBITOR. Valente et al. have demonstrated that both sildenafil and pentoxifylline reduce the plaque size in tunical fibrosis induced by injection of TGF-β 1.16 Encouraged by pentoxifylline's observed suppression of collagen production in Peyronie's cells in tissue culture, as well as its efficacy in other human fibrotic disorders, we have been offering patients treatment with pentoxifylline for Peyronie's disease since 2002.
Our patient used sildenafil before recovery of erectile function, and one might well question whether this played any role in either the pathogenesis or resolution of his disease process. Pentoxifylline has been shown to be a nonspecific PDE inhibitor, and PDE inhibitors have been shown to play a role in preventing fibrosis.17 However, sildenafil has been implicated in causing and preventing penile smoothmuscle fibrosis.18,19 At this time, there is a paucity of experimental data regarding PDE inhibition and fibrosis, compared with data regarding pentoxifylline and fibrosis, and so we feel that the patient's improvement was due to the effects of pentoxifylline rather than those of sildenafil. Although this case study does not represent a placebo-controlled study, the fact that there was objective resolution of the dorsal calcification leads us to believe that this is not due to the placebo effect or to spontaneous resolution. We continue to follow a growing series of patients with improved or resolved calcified plaques on follow-up ultrasound with concomitant improvement in clinical symptoms, as is the case with the patient presented in this case study. We have identified 16 patients so far, and will present our data in the near future. Since pentoxifylline has been shown to inhibit fibrosis in humans and in animal models, we generally use it in patients who have evidence of ongoing inflammation (e.g. pain) or fibrosis (e.g. changing curvature). We have not generally used it for patients with chronic stable lesions or with heavy calcifications, since we presume these to be stable and less amenable
to pharmacologic intervention. We have seen improvement of this nature (full or partial resolution of calcified plaques) in approximately 2–3% of our patients. Stabilization of the disease process is common, but is far more difficult to distinguish from the natural history of the disease.
*****************
Article by Gonzalez-Cadavid
Discussion:
To our knowledge this is the first demonstration that PDE5 and 4 are both expressed in the human and rat normal tunica albuginea, and the respective Peyronies Disease and PDlike fibrotic plaques, as well as in the cell cultures obtained from these tissues. Our results are also the first published report on the inhibition of a TGFb1-induced fibrotic plaque in the rat model of Peyronies Disease, through the reduction of collagen deposition and possibly an increase in apoptosis of the resident fibroblasts and myofibroblasts, by long-term oral administration of the respective PDE5 and cAMP-dependent PDE inhibitors, sildenafil and pentoxifylline, and the NOS substrate, L-arginine.
The in vitro effects of both PDE inhibitors and a cGMP analog, 8 Br-cGMP, on fibroblast cultures obtained from the human Peyronies Disease plaque, support the hypothesis that these agents may, at least in part, be effective against fibrosis by reducing the relative number of these fibroblasts/myofibroblasts through the induction of apoptosis of these cells. We also found that these compounds: (a) interfere with fibroblast differentiation into myofibroblasts, the cells that are key players in tissue fibrosis, and (b) down-regulate the synthesis of collagen I but not collagen III. The effects of sildenafil are probably exerted through the inhibition of PDE-5, and in the case of pentoxifylline through a cAMP-dependent PDE, potentially PDE4, although we cannot discard other mechanisms. We believe that our results may open a new approach for the treatment of Peyronies Disease and, by extension, tissue fibrosis, based on the use of PDE inhibitors and other enhancers of PDK activity, and possibly of compounds and biologicals that enhance NO synthesis.
Our results with the PDE inhibitors, whose main effects are to increase cGMP or cAMP levels [50], are a
natural extension of our previous work demonstrating the antifibrotic effects of NO [2,6,14], one of the main regulators of guanylyl cyclase, and hence of cGMP synthesis [29]. Both cGMP and cAMP participate to a certain extent in biochemical cross-talk, by mutually regulating their respective levels [51,52], so that even cAMP is in a way related to the NO-cGMP cascade. We have shown previously that iNOS is spontaneously induced in the human Peyronies Disease plaque and in the Peyronies Disease-like lesion in the rat model, increasing NO synthesis in these tissues, and that long-term blockade of iNOS by L-NIL intensified fibrosis in the rat lesion [2,6]. This led us to postulate that NO inhibits fibroblast differentiation into
myofibroblasts and reduces collagen synthesis based on our own results in the animal model of Peyronies Disease and the fibroblasts cultured from human TA and Peyronies Disease plaque.
The reduction of the fibrotic plaque we have now observed in vivo in animals receiving L-arginine coincides with its effects in preventing experimental ethanol-induced inflammatory and fibrotic changes in liver, kidney, lung, and cardiovascular system [52–57]. The action of Larginine is probably mediated by the stimulation of NOS activity, because although the endogenous levels of Larginine
in the rat penis appear to be above theKmof the pure recombinant enzyme, this does not take into account the interplay of factors that may increase the effectiveKm in vivo. This was previously shown by the increase of L-arginine levels in the penis and the improvement of erectile dysfunction in the aging rat by NOS stimulation achieved after a regimen of L-arginine administration similar to the one used in the current work, 2.2 g/kg/day [45]. This dose is within the range normally employed as
vasculoprotective, for long-term studies in the rat [56,57].
As to the PDE inhibitors themselves, our in vivo and in vitro results showing an inhibition of collagen synthesis and stimulation of apoptosis in the Peyronies Disease-like plaque and in Peyronies Disease cells by both sildenafil and pentoxifylline are in good agreement with the extensive use pentoxifylline as an antifibrotic agent in liver and vascular fibrosis [39,40,58,59]. The fact that the cGMP analog 8-BrcGMP inhibited collagen I synthesis and induced apoptosis in Peyronies Disease cells suggests that in the case of sildenafil the in vivo effects on the function of the fibroblasts/ myofibroblasts in the TA may be mediated by the elevation of cGMP levels. In addition, cGMP analogs, PKG activators, and PDE inhibitors have been shown to inhibit collagen synthesis [31,32], and induce apoptosis [33], and some of the PDE inhibitors like sulindac
sulfone (Exisulind) are effective as anticancer agents because of their intense pro-apoptotic action [37,38].
However, since pentoxifylline did not affect cGMP levels in the human Peyronies Disease fibroblasts, and the drug is considered to be a non-specific inhibitor of cAMP-PDE [60,61], and at least in some cell types does not affect cGMP levels [58], the increase in cAMP may also have played a role in the antifibrotic effects we observed with pentoxifylline. Whether this occurs via the inhibition of PDE4 present in TA and Peyronies Disease remains to be established with isoform-specific inhibitors like rolipram [50,61,62]. It should be noted that pentoxifylline may also act through its blockade of PDGF-induced activation of the mitogen
activated protein kinase system [62] and of other cytokine- mediated fibrogenic mechanisms [40].
Our daily dose of pentoxifylline is 1/5 of the oral dose normally employed in rats for the long-term treatment of fibrosis [58,59], and in the case of sildenafil, it is 1/2 to 1/7 of the chronic dosage used in recent studies in rats [63,64]. When our 10 mg/kg/day dose is translated into the equivalent dose in humans by correcting for differences in the body weight/skin area [65], it is roughly 1.5 mg/kg which is about the dose ingested by men with an on demand single 100 mg tablet. Our selected dose
was dispensed in 24 hours and not as a bolus administration, so that concentrations at a given time should be much lower, considering the short half-life (about 4-6 hours) of sildenafil. Therefore, the daily doses of the PDE inhibitors tested in the current work are not suprapharmacological or associated with toxicity. In addition, it may be possible that local administration of either L-arginine or the PDE inhibitors, e.g., by injection into the plaque or in vehicles able to traverse the skin and TA
may considerably reduce the effective dosage.
We do not know why administration of L-arginine, which should increase NO synthesis and hence cGMP
levels and has been shown to be effective in arresting the growth of the TGFB-1 induced plaque in the rat model of Peyronies Disease, failed to stimulate apoptosis, as could be expected from its effects increasing it in vivo in the smooth muscle of the pulmonary arteries [23,24]. However, the absence of a stimulation of the apoptotic index in the Peyronies Disease plaque by L-arginine may agree with the decrease in apoptosis observed in liver transplants which is in line with the anti-apoptotic effects of NO in certain conditions
and tissues [66]. In any case, not only cGMP but its down-stream compound in the NO-cGMP cascade,
PKG, is also effective in preventing fibrosis and remodeling in balloon-injury and arterial restenosis [32,34], as shown by gene transfer of the PKG cDNA in rats. However, despite this evidence for pentoxifylline and cGMP-PKG, we are not aware of reports on any antifibrotic action for the most widely used PDE inhibitor, sildenafil, that is specific for PDE5A, the main PDE protein detected in the corpora cavernosa [41,42].
Our results demonstrating the presence of PDE5A and PDE4 in the TA and Peyronies Disease plaque in the human and
rat, and in their respective fibroblast cultures, provide a rationale for the anti-fibrotic effects of PDE inhibitors on the Peyronies Disease animal model and on the Peyronies Disease cell cultures. The PDE5A1 and PDE5A2 proteins have been previously localized in human penile corpora cavernosa [43]. The PDE5A3 variant was also found in corpora cavernosa and confined to tissues with a smooth muscle or cardiac muscle component, and is twice as sensitive as PDE5A1 to sildenafil, but, as with PDE5A1 and 2, is subjected to transcriptional up-regulation by both cAMP and cGMP [49,67]. This has been postulated to imply that long-term treatment with sildenafil may induce partial resistance. As to PDE4, it is interesting that cAMP can activate PKG nearly as effectively as cGMP, so that eventually, the inhibition of PDE4 may end up causing PKG effects (e.g., counteracting fibrosis) similar to those exerted by as the inhibition of PDE5A.
In summary, we propose that pharmacological interventions aimed at elevating NO, cGMP, or PKG levels, and possibly cAMP, in the penis are potentially useful for the treatment of Peyronies Disease, and more speculatively, for other fibrotic conditions. This work has not addressed the question on whether this intervention would induce regression of an already well-formed plaque, but comparison of multiple gene expression profiles in human Peyronies Disease and the related Dupuytrens disease suggests that both conditions are in a dynamic cell and protein turnover involving replication, differentiation, apoptosis, and collagen and extracellular matrix synthesis and breakdown [8–10]. Therefore, modulation of any of these processes may eventually involute the plaque, as has been observed in generalized fibrotic conditions [68,69].
Tim
Thank you Tim. I too wanted to make the point that even in the case of ED after prostate surgery, that Viagra is prescribed at 1/4 of 100 mg tablet or 25 mg. It is not the intent to effect erection and it has no slight impact on erections. It is prescribed (according to the leading urologists that treated me)to prevent the consequences that come from no erections (fibrotic), and to encourage long term recovery by encouraging pathways necessary for long-term recovery. I am not sure of the recommended dose used along with Pentox for Peyronie's, but I suspect it is a very low daily dose. As you state, it is not for erection or blood flow but for the sole purpose to block Transforming Growth Factor Beta and reduce inflamation.
Blood flow is good and can be promoted in many ways. Blocking Transforming Growth Factor Beta however is only approached through the Pentox/Viagra/arginine combination.
Please forgive me for repeating in part what you already stated. I also want to make the point that concluding these drugs are for blood flow, misses the point. Also if my restatment is in error jump in and correct me.
Tim,
Thank you for the information....I will have to read it again...I will have to say my first past at it...well it sounds like they are going the long way around the barn.....to say we can't figure out the formula, but from a pragmatic sense it seems to work, hit and miss approach...there is nothing wrong with this, I feel most of the forum members have been using this approach since we have no good medical approaches to follow, Oh there is the take two Vit E and call me in 12 months.....
Now the more aggressive ones like I said seem to be moving towards the treatments for ED, or drugs that have been used for ED in the past and the present....along with mechanical approaches...
The article says it does not promote pentox if you are stable, only if you have pain or your curve is still in a inflammation phase....which I thought and brought up before that someone who is in pain or inflammation might be being prescribe pentox because of his stage in the peyronies, once again, we have different conditions...and this report does state this....
I will read it again several times, I'm not a doctore and by my English and grammar you can tell that I'm not schooled in medicine, but I can tell if someone is pissing on my back and tell me it raining....this report is full of holes like swiss cheese, I can't hag my hat on this, can you???
Pentox has been use for illness with small extremities like the hands and feet, it gets the blood to these areas....sometimes one wonders if you can over think somethings....or if the why is deeper than the actual fact of the remedy....oxygen is amazing thing.....just look at what peroxide does to a wound....just oxygen...amazing product...
Thanks for the articles....they have there rhyme and reason....I think it would be good for you to put it in the best layman terms as you can for everyone also....
Rico
Isn't that a fancy way of saying circulation or oxygen....this blocking of tgfb? When they say they don't know how things work?
Hawk I find this interesting....I hope my ignorance can be of some benifit to all in this research.....I'm always ready to learn something new....
Rico
FYI - If any of you folks out there happen to be dealing with hypertension as well as peyronies as I am, Cozaar (losartan) and Hyzaar (losartan + thiazyde) inhibit TGF Beta as a secondary effect. Pretty neat! Lower your BP while you take care of your peyronies as well. Synergy!
- George
>>I will read it again several times, I'm not a doctore and by my English and grammar you can tell that I'm not schooled in medicine, but I can tell if someone is pissing on my back and tell me it raining....this report is full of holes like swiss cheese, I can't hag my hat on this, can you???<<
I want to be precise about what I say here. The quoted parts of articles are "Discussions". When one writes a discussion it is aimed at dealing with criticism. The author needs to say what they think, and also address what they know others are thinking (especially those who might criticise). Therefore, in a discussion (which is not usually available to those who do not have full access, but who are stuck with abstracts only).
Therefore, these discussions are dealing with the potential criticisms. I must categorically state, though, that it is NOT "full of holes". Rather it is an above average discussion of the issues raised, and where uncertainty resides. Thus, it is accurate and above all, honest.
What I hang my hat on is physiology, and things that make sense. The discussions show - clearly show - that the effects are not done through "blood flow". I really thought that these discussions (despite the technical jargon) would make that clear.
In brief then, the answer to: "Isn't that a fancy way of saying circulation or oxygen....this blocking of tgfb? When they say they don't know how things work? " is...
No. It is not. It is about fibrosis, and antifibrotic pathways. Not blood flow. Not oxygen.
Fibrosis.
Tim
Percival,
I was taking vitamin E many years ago for months and months, it did nothing for me, I've lost count now of how many people have told me they took vitamin E and it did nothing, the stuff is a waste, we should get a member poll on this I think.
ComeBackid
Dear forum members,
I will be going into the doctor(urologist) shortly, he wanted to see me after three months...my peyronies first started in may and I went to see him at the end of June....so I'm really going now on almost five months....I'm just on the second week of VED and will be moving to larger tube soon and feel this is something that can change my condition....but I want to take advantage of everything I can in the early stages of this peyronies phase....my Urologist has been treating peyronies for over 15 years...he said Viagra wouldn't help me, or to use a VED....but he has provided me with a script for one now...
I'm using dmso(thacker), this is a hassle, but I have stuck with it for the last month now....my plaque is smaller, but my size is the same...maybe a little bigger, not much...
I don't want to leave anything on the table like I said in the early stages....now I keep trying to get my arms around the pent ox/arginine/Viagra and I can read all the reports on tgf beta ect...and fibrosis blockage....I know "I" think and not the medical community that the blood flow or circulation might have something to do with the healing....
Now I just read Dr. Levien's post in July and he said if you wanted to do something short of injection therapy or Iontophoresis...then he would suggest doing pentox 400mg twice a day with 500mg of arginine twice a day...He didn't mention viagra...but his first choice is still verapamil.....
I guess I want to make the most out of next visit and come in with my guns loaded and come back with the best possible oral medicines out there today to enhance my ved.....I have read and heard from people who Dr. Lue puts on pentox/arginine/viagra to stop all other supplements....and in the trental(pentox) reports they state not to use Ginko and vit E.....
Any suggestions....
Rico
Quote from: Tim468 on September 26, 2006, 07:37:12 PM
>>No. It is not. It is about fibrosis, and antifibrotic pathways. Not blood flow. Not oxygen.
Fibrosis.
Tim
Tim, I agree completely. This whole fibrotic thing is about things like TGF Beta and iNOS. HOWEVER, there might be some drugs/supplements that affect BOTH blood flow/circulation and fibrotic factors. I don't know of any specific examples, but would speculate that there is always that possibility. But the two are definately different issues. For example, Horny Goat Weed inhibits PDE-5 which enhances eNOS and thus positively impacts circulation/oxigenization and then their is Chinese (Baikal) Skullcap which inhibits iNOS which in turn inhibits fibrosis. Fascinating stuff.
- George
Rico,
I am confused as to why we keep going over and over what Pentox does. A physician on this forum with access to full text studies and articles and who has had decades of personal experience with Peyronies Disease and who goes out of his way to promote accurate information on this forum clearly responded to your mistaken assessment. He made this very clear quote and added a ton of other information that i think deserved rereading until it was absorbed before jumping to more false conclusions.
Quote from: Tim468 on September 26, 2006, 02:02:56 PM
The reason that pentox is used is to allow it to block the effects of Transforming Growth Factor BEta (TGF-B). The reason that Viagra is used is to promote the iNOS pathways that exert an anti-inflamatory effect - NOT to promote blood flow.
As though he never said "NOT to promote blood flow", you still came back with yet another post.
Quote from: Rico on September 26, 2006, 04:55:21 PM
Isn't that a fancy way of saying circulation or oxygen....this blocking of tgfb?
If it were a fancy way of saying circulation, Tim would not have said, "NOT to promote blood flow" You must know Tim would have
never dismissed your earlier conclusion as false if blood flow was the goal. He understands the report and he is honest and forthcoming. He understood your conclusions.
This has nothing to do with stumbling on ED drugs, or different schools of thought like different inventors. It is not a way of looking at it. It is science and rational thought. By the way, Einstein was never an inventor, he was a psysicist.
It may be that you are trying to run too fast and this is contributing to your jumping to unsupported conclusions. We are not likely on this forum to unlock the inner secrets of the Peyronies Disease puzzle. We do not do research, we search through other people's research. While I am the LAST to blindly follow a doctor, men with much more knowledge than we have, with a deep knowledge of these drugs, observing some real patterns of success, have worked out a combination drug therapy by design, not by chance. Time will tell if it is effective. It serves no purpose for mail carriers, police officers, truck drivers, martial arts experts, and computer geeks to repeatedly theorize on topics they don't have the background to discuss.
Somewhere we have to draw a balance between questioning, and sidetracking the entire topic with a repeated repostings of false conclusions. We learn much faster by reading and listening than by talking and posting.
PS: Good luck with your appointment.
I think we would all agree that blood flow is a big important factor with peyronies. More is definately better when it comes to blood flow. But I think Rico is trying to tie everything back to blood flow which is a mistake on his part. We have to remember that peyronies is a complex disease that is likely caused by a number of converging factors. One of course would be trauma. But if trauma were the only factor, I am sure that half the male population would have peyronies. So we have to start looking at how to improve blood flow. But we also have to start looking at factors that might be inducing fibrosis in other ways and things like TGF Beta and iNOS. So we need to be looking a fibrosis suppressing approaches. And we most certainly have to be looking at things like inflammation which I feel is another huge factor in peyronies along with insufficient blood flow. As long as we have inflammation, we are going to be having bad things happening even with all the blood flow in the world. The increased blood flow is only going to supply more construction material for the plaque building process. So we need to be looking at how to reduce inflammation. The other factor, I am learning as I go along, is the need for patience. Anyone looking for a 'quick fix' for their peyronies is going to be in for a dissappointment. My peyronies has gotten better hugely over time to the point it does not even concern me anymore. But all of this has happened gradually and in the process of staying the course rather than jumping from one technique or supplement to another in search of the magic cure. Personally, I am really keen on research, if research indicates that something has been shown to be even marginally helpful, I am eager to include that in my regimin and to do it over a long period of time without expecting to see immediate results. I am in this battle for where I am going to be five or ten years from now, not for where I am going to be tomorrow. Because I know where I am going to be tomorrow, the same place I am today. But that does not deter me, because I am willing to take the various pills and give them lots of time to do their work. After over two years dealing with peyronies, I am very happy with where I am today and I am very happy with where my hypertension is today and am continuing to battle it as well with both conventional and complementary treatment. But I do want to second what Hawk is saying here in that we will not help ourselves in the long term by trying to oversimplify matters. We need to realize that peyronies is a persistant and tough thing to deal with and it takes a lot of patience and tenacity to make progress against it. I am here to say that over time I have made a whole lot of progress by using things over the long term that others on this forum have 'tried and tossed aside'. And along that line, it is really important that when something is not working, we ask, what might I be doing wrong in applying this technique or supplement that might be compromising its effectiveness. The whole thing is not simple folks. Its all virtually unexplored and unimmaginably complex territory and we need to be really careful before we embrace OR dump concepts of treatment.
Just my thoughts,
George
George.
This is Hopeful. I have had Peyronies Disease for 1-yr. now- 35% curve upwards at tip- loss of length- and girth- possible trauma - also, I am 58- my brother is 57- both Italian decent- ( father) - both acquired Peyronies Disease at about same time.
I was doing internal and external enzymes- have lost hope- my Testostorine is very low- 200- Have been to the quack doctors- the scammers- who just take money- have not gone to a so-alled Peyronies Disease expert like a Dr. Levine or leiu- am frustrated- have studied a lot-and still dont know Jack crap or what is the right thing to do.
VED no VEd- Epson Salt, Pentox, ACL..Neprinol, Vi E- IONTO???????- HELP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!.
I would appreciate knowing what protocols you are using and how often.
Thank you,
Hopeful
Hello Hopeful,
If you look at my post under improvement accounts https://www.peyroniesforum.net/index.php/topic,466.0.html (https://www.peyroniesforum.net/index.php/topic,466.0.html) , it will give you an idea of what I am doing and what has worked best for me. My basic strategy is to take a nominal dosage of a whole lot of things that research has shown may be helpful for my condition and stick with that over a long period of time. I really get turned off by those who say "you have to take a LOT of our expensive stuff to MAYBE see results" I much prefer (with a few exceptions such as a low level dosage of Neprinol) to stay with the stuff that research indicates might be beneficial. As in, for sure I want to increase blood flow and vascular health, for sure I want to support nitric oxide metabolism, and for sure I want to knock out inflamation and oxidative stress. Knowing that, I am concentrating on using stuff that is known to accomplish that. From there its just a very painful and frustrating waiting game in the hope that things get better. And in my case I have been well rewarded by things getting better although the progress has been glacial. Be very afraid (as you have learned) of the countless con artists who promise instant solutions and walk away with your money. Better to spend your money on proven supplements that can slowly nuture you back to health. At this point, I am making some compromises with my peyronies. I have decided to take more thiazide to lower my blood pressure which will have an impact on my erections. But there are always tradeoffs when it comes to caring for ones health and my blood pressure is a priority for me right now and I am intent on actually finding a way to reverse my hypertension which is as big if not a bigger challenge than peyronies. But my strategy is to try to use the same tecniques to fight both as much as is possible.
Wishing you the best,
George
Currently I'm on the pentox, L Arginine protocol with ALC as well, and I take trazodone at night for nightime erections. Is there anything that can be substituted in place of viagra for one like me who can't afford viagra? Does trazodone do anything similar to what viagra does as far as PDE-5 inhibitors?
I thought about adding in red korean ginseng with my pentox, l arginine, and trazodone, or horny goat weed with macca, would this be safe to try or even be worth it? To me it seems there is good reasoning behind why one uses pentox, viagra and larginine, and I'm trying to find a pill or drug to replace viagra in that combo that does similar things.
Any ideas for this?
ComeBackid,
Horny Goat weed has anti-PDE4 and 5 properties (I am pretty sure of this), and works through mechanisms that are similar to Viagra. It does not work as well, and the proper dose has not been calculated, and also, the concentration of active ingrerients is not regulated in such a way that one can be sure that one brand is weaker or stronger than another.
Red Ginseng out-performed trazadone in terms of reducing "detumesence" - the property of blood leaving the penis. I do not know, but have read speculation that it exerts an effect on the nerves that enervate that. I believe that is the same mechanism as trazadone.
Thus, in terms of "rough equivalencies", HGW is similar to Viagra, and RG is similar to Trazadone.
I take both. ;D
My nocturnal erections are way better now. My GF and I are struggling a bit in our relationship and we taking some time off, and so are not currently sexually active, so I cannot comment on how sex might be. :'( But if that changes, I will file a full report (OK, a modified report!).
I am not seeing a change for the better in the Peyronies Disease, and in fact it is slightly worse with two new areas of concern. I am really bummed about it, but am encouraged that the deformity is not happening because of my use of the VED.
It dawned on me that a tooth that needs a root canal (and hurts) might be causing me to have a generalized inflammatory state in my body, so I am going to get that fixed pronto, and placed myself on Ciprofloxacin to reduce any potential infection (onthe advice of my dentist). I do know that chronic periodontal disease is associated with accelerated cardiovascular disease and earlier deaths, so I think that this might be a hidden factor in my recent worsening. We shall see. I have not yet made a final appointment with the Uro, but am shooting for 10/5 to see him, and hope to start Pentox that day and to get him to advocate for me to get Viagra covered for me as well. If that does not work, I will continue to use the HGW, maybe increase the dose of it.
Finally, one comment about blood flow. I am a complete believer in the importance of blood flow, and in particular the importance of regular erections. I am not certain if the issue is that stretching the tissue prevents contracture (my personal theory) or if the erections are associated with "improved oxygenation" of tissue (doubtful). I doubt the latter because most men do not get Peyronie's and do fine with a variety of erectile functions (from frequent to no erections). Also, the design of the body is not that stupid. Our penises are not starving for oxygen when we are not erect. Nourishing blood flow to all tissues continues - we just do not pool blood in the sinusoids of the erectile tissues. So the whole theory of O2 delivery as the source of the problem does not quite make sense.
However, regular erections, and a continued sense of "fullness" when soft are both associated - IN MY LIFE - with a lack of progression. And, a lack of sex/erections, and an "uptight" feeling have been associated again IN MY LIFE, with progression. So I am reporting my own experience here - I want to be clear about that. And some of the "uptight" feeling may stem from my being anxious and thus having more adrenergic tone (which is what causes detumesence!). That personal experience is why drugs like Ginseng and trazadone make sense to me (as does meditation and prayer to reduce anxiety).
One other thing - regular exercise is also important to promote healing blood flow and to reduce anxiety.
Tim
Tim,
I submit the following in conjunction with your theory on why erection may be a deterrent to the advancement of Peyronies Disease. This opinion differs from the one you stated. It also seems to logically satisfiy for my mind the entire reason our healthy young bodies cycle through several nite-time erections and to speculate further, why erection reducing conditions like: diabetes, stress, prostatectomy, aging, all result in higher incidence of Peyronies Disease.
Oxygen levels vary widely from reduced levels in the flaccid state to very high levels in the erect state. During sleep, oxygen levels are high and a man can normally have three to five nocturnal erections per night, each lasting from 20 to 40 minutes. These nocturnal erections are thought to be part of the body's natural maintenance of healthy erectile tissue. Oxygen levels appear to affect two substances that are important in achieving erection: transforming growth factor 1 (TGF-B1) and prostaglandin E1.
The smooth muscles in the penis produce TGF-B1, a component of the immune system, and one of its roles is to produce collagen. Collagen contributes not only to structural tissue in the body, but is also the material that comprises scar tissue. Prostaglandin E1, among its other functions, opens blood vessels and suppresses collagen production. There is some evidence that when oxygen levels become too low, TGF-B1 production increases and prostaglandin production decreases. If oxygen levels become too low, smooth muscles atrophy and collagen is overproduced, causing scarring and loss of elasticity and reduced blood flow to the penis. Infrequent erections deprive the penis of oxygen-rich blood. Without daily erections, collagen production increases and eventually may form a tough tissue that interferes with blood flow in the penis.
The entire document is in our Resource Library https://www.peyroniesforum.net/index.php/topic,130.0.html
So in conclusion then one can say Horny Goat Weed works like viagra, and Red Korean Ginseng works like trazodone.
So I guess since I"m taking pentox, l arginine and trazodone, I could also add in horny goat weed to try to mirror the effects of viagra since I can't afford it. I just wanted to make sure its safe to add in horny goat weed with the trazodone and pentox, and l arginine. I'm still awaiting the results of my total testosterone blood test. By the way how much horny goat weed do you take?
ComeBackid
Hawk,
When I was talking about pentox and Viagra and ED ect...oxygen and circulation....I guess this is what I'm saying....circulation brings on oxygen rich blood, the doctors see this, give some pentox which was developed to get to the small extremities and trazdone which was a antidepressant that gave people erections(blood flow) and Viagra a high blood pressure med, when use on college students, well they couldn't get the extra pills back:)...toga, toga!!!(animal house)....now you look at all mens vitality supplements, and the number one ingredient is arginine..more blood flow...
The one thing pepole are missing out on is OPC's grape seed, bilberry, and maritime pine bark...great for circulation also....
I guess I'm a little confuse....it is all about oxygen...circulation...blood flow...I know this doesn't sound very medical and is basic...but with out going the long way around the barn...this is the end effect...
Please let me know if I read that last post right Hawk...thank you and God Bless..
P.S I have been reading on Trental(pentox) and the label says not to take ginko or vit e with this drug...and Lue has you go off all other supplements...something people should think about, this is a blood thinner...mix and matching without talking to your doctor or doing your homework could be fatal...
Rico
Rico,
I think that your problem with this material is that you are a reductionist. You are trying to reduce the issues of Peyronies Disease donwn to a unity - a single principle that explains everything. The problem with that is that it does not account for the complexity of the human body. Blood flow is important. I am not sure why it is that you cannot see how important basic repair mechanisms are that work independent of blood flow. While it is true that if you put a tourniquet on yourpenis and choked off all blood flow that the processes of injury and repair would not work, in general, the processes of repair are not dependent on "blood flow". IOW, blood flow is not the problem nor is oxygenation.
That is "normally". In Peyronies Disease, I think that we need to look closely at everything. Thus, I think the stretching of erections, and the healing nourishment of increased blood (and hence increased O2 levels) are both important. But it is also true that the cellular machinery is not working properly in Peyronies Disease. Increasingly a sense that there are microscopic "injuries" and an abnormal repair process informs how we look at Peyronies Disease developing. More than one researcher has pointed out that if there were a general problem with fibrosis, then there would be a total fibrosis everywhere. The focality of the lesions suggests that there may be a general problem with repair, and that it is manifested wherever there is an injury. The concept that there are microscopic injuries - injuries that would normally simply be fixed right up - makes sense. It could explain why there are isolated lesions instead of a generalized process.
Certainly in some diseases, like priapism, wherein the entire penis' erectile tissue is damaged, there is a generalized process of inflammation that causes the entuire penis to fibrose down to a woody stiff non-functioning piece piece of scar tissue. So it seems clear that Peyronies Disease is different than that.
Hawk, the problem with your other theory for me is that I am unsure how we determine if this fact about O2 delivery is true for a man with fewer erections. IOW, are we sure that when you have fewer erections that the processes described actually happen. And why do they happen to some but not others? If it were a O2 dependent pathway, then every man with flagging erections would get Peyronies Disease, and that clearly does not happen. Somehow, though, I believe that this is accurate on some level - that erections lead to healthier penile tissue and slow the progression of disease. I also wonder if the increased blood flow of an erection is equivalent to that induced by a VED.
I also wonder if the Peyronies Disease that I have was less impressive as a young man because of my insistence - not always to the good for my mental health - to have a LOT of sex. I masturbated most days when I wasn't screwing, and there was a strong sense of "use it or lose it". In fact that does correlate in time with my aging processes - in that with age and a lower testosterone level (measured and found wanting!) I get hard less often and my Peyronies Disease is accelerating. But hair turns grey too, and bones demineralize, and aging happens. We cannot turn off this process of aging - and that is NORMAL, not pathologic...
However, I am not going to go out and buy my burial plot just yet. I am going to the doctor and going to use my VED and planning to reconcile with my partner and planning to continue to use it!
Tim
Quote from: Tim468 on September 29, 2006, 09:31:31 AM
If it were a O2 dependent pathway, then every man with flagging erections would get Peyronies Disease, and that clearly does not happen. Somehow, though, I believe that this is accurate on some level - that erections lead to healthier penile tissue and slow the progression of disease. I also wonder if the increased blood flow of an erection is equivalent to that induced by a VED.
My gut feeling is (just what we need, the gut feeling of a computer geek on physiology):
Many suffer minor injuries, many suffer reduced oxygenation from reduced erections, but when it is
combined with other known and unknown factors (genetics and others) Peyronies Disease results.
Maybe TGF increases and the spiral begins. Remove either the unknown factors OR remove the TGF and you would stop the process. In other words, many of us have the "other factors". Us walking around with some of the conditions for Peyronies Disease means that diabetes, prostatectomy, or injury, provide the missing component that leads to an increased incidence of Peyronies Disease. Whether this is true or not, I cannot know, but it would explain the pattern of Peyronies Disease which we see. It would also logically resolve the the reason why and how some of the promising treatments would work.
On the subject of VED. VED's expand the tissue like an erection, but as far as blood flow, Dr. Mulhall says "VED's pull in venous blood and do
nothing for oxygenation."
Rico,
Many things increase blood to the penis; VED, trazadone, heat, and many more. These are not all known to specifically reduce TFG.
Additionally, Pentox seems to decrease TGF far out of proportion to any increase in blood flow.
While blood flow is good (within limits) for stretching, oxygenation, and maybe having some effect on TGF, Pentox seems to provide benefit that exceeds that which would result from just increasing blood flow. That is why trying to reduce it all to just blood flow does not begin to work. If it did, then men with regular daytime and night-time erections with oxygen rich blood would never get Peyronies Disease. Also, if it were that simplistic, a 3rd rate researcher would have solved this puzzle many decades ago. It is one thing to conclude something is good. It is another to conclude that this explains it all, we have solved the puzzle and I now understand how it all works.
Clearly it has not been solved and we do not understand how it all works. Neither do those that dedicate their lives to finding the answer.
Tim,
Reductionist...when you said that, you did sum me up in one word....it made me think..this plays in every part of my life...keep it simple..
So I agree with you that it has more than one element...
When you say that the part of microscopic "injuries" which cause abnormal repair process, I thought that the process was normal...maybe due to the fact one is more susceptible to this injury at a stress time or age or the nature of the trauma ect...which all can play a part...but isn't it a injury and the way the body does a "NORMAL" way of repair is with scar tissue....and if it was on your ASS(George this is for you:)), then it wouldn't matter....
The VED doesn't supply oxygen to the tissue, but it does provide warm blood which keeps the elastic function by stretching the tissue and remolding it in the case of peyronies...
When the doctors came up with steroids to help patience that were bed ridden for there muscles wouldn't arthropod.....maybe this is the case with the pentox/arginine/viagra... to keep the blood flowing to this area...which yes stops scar tissue through a more complex delivery, but the whole process has to do with the blood flow, for without it, then it wouldn't happen....
I think it is a wonderful thing when when two different approaches can come together and compliment each other....mechanical and medicine.... It looks like this is the approach with peyronies...
I must say I wonder...if it is two mechanical approaches that are really working, the needling of the plaque more than the actual verapamil it self....just like the electric current instead of the verapamil through the other delivery method...it is hard to get research on that...for the razor blades make the money not the razor...and electricity and needles are cheap:)...
Tim you do have above average skills in breaking down reports and articles and are a huge asset to the forum....and you and others have made me feel different about pentox....trazdone and some other meds...
The one thing that we do have in common is we are both proactive.... I'm doing thacker and the VED....in my research I believe the dmso is a vacillator....and I know I get some circulation from arginine also and ginkgo.....and I work the VED to remold the plaque...
Your approach is not that much different...using VED....maybe not the same protocol....and taking supplements....and some meds....
We both agree on the common sense of over all health and well being...we like all people have are own demons or issues in life to deal with, this causes stress..which hinders healing or general health...I choose exercise and I know you are leaning this way also...diet, you believe in also....
More and more doctors are looking at heart health as the key to ED.....if you ask why, they will say, good circulation....also for vision health...circulation...blood flow...yes a simple way to say it...if you talk to a mechanic about your car...her could go on and on....but change the oil every couple thousand miles...the oil, the blood....it is the key to long life of the engine...
Rico
Quote from: Rico on September 29, 2006, 11:56:25 AM
to keep the blood flowing to this area...which yes stops scar tissue through a more complex delivery, but the whole process has to do with the blood flow, for without it, then it wouldn't happen....
Rico, just
what if, it all has to do with TGF factors and a drug could reduce those without increasing blood flow. Or, what if it all has to do with inflamation response that is set off by general inflamation elsewhere in the body? Are you still stateing that we on this forum are now positive it ALL has to do with blood flow? Are you stating that you are positive it all has to do with blood flow? Or did you mean to say that blood flow may have a lot to do with it?
Trust me, if the world does not know the answer, we will not discover it here. We will only learn it from those that learn it first. ;)
Hawk,
I'm saying I don't think :MY: peyronies had anything with blood flow or inflammation intially, it had to do with me causing trauma to myself by being in a stress state of mind when my wife left me and I wasn't sleeping and eating right, over the age of 50, unit wasn't fully erect and I pounded it like a zoo monkey trying to have a organism so I could fall asleep, I keep at it half the night and even though I was sore, keep this madness up for several days, and I injured the area.....now the inflammation set in, and the Normal process of healing the wound with scar tissue came into play....mine was a trauma injury...each and everyone of us has are own story....if I knew what I know today...
Well I would do a lot of things different...and if I just went in to the Urologist after the first week, then maybe pentox/arginine/viagra would of been my choice.... and maybe I would be where I'm at today...let's face it, that is no magic bullet either...
My thoughts which I agree with you also...don't mean a hill of beans:).....is that without blood flow nothing could happen, it is the delivery and as George pointed out can be the collagen also(scar tissue), which is a culprit.....It is more complex than just blood flow or circulation, but I feel this is the best thing one can do for hisself, or I should say one of the Better things one can do...and I'm not going to ever post on this again...I promise this:)....
And as far as the whole world does not know the answer.....well the Old Man might not get the credit for it, but I think once they figure out how to get here name on the devise or get some sort of tie in, you will VED with another type of drug or enhance mechanical approach....needling the plaque or electric current with VED....
I guess for some reason I do speculate on here and maybe this isn't the place for it.....I will try to refrain from this in the future.....
God Bless...
Rico
There is ONE active ingredient in Horny Goat Weed http://en.wikipedia.org/wiki/Horny_goat_weed (http://en.wikipedia.org/wiki/Horny_goat_weed) when it comes to Peyronies. That ingredient is known as Icariin. Icariin is a mild PDE-5 inhibitor and a VERY mild PDE-4 inhibitor http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12646997&dopt=Citation (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12646997&dopt=Citation). Any quality Horny Goat Weed product should state on the label the (standardized) percentage of Icariin content it contains. In short, Icariin is a drug, although it is not officially acknowedged as such. Icariin also has additional beneficial qualities. For example, it is known to be a rather powerful antioxidant and a tonic to the bones. It also is a testosterone 'mimic' http://www.ingentaconnect.com/content/bsc/ajan/2006/00000008/00000005/art00012;jsessionid=hial4idgp19a.henrietta (http://www.ingentaconnect.com/content/bsc/ajan/2006/00000008/00000005/art00012;jsessionid=hial4idgp19a.henrietta). It is also reputed to protect the brain http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16232349&query_hl=3&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16232349&query_hl=3&itool=pubmed_docsum), liver, and perhaps other vital organs from toxins. One can search forever and not find any evidence of toxicity regarding Horny Goat Weed or Icariin, but just the fact that it has drug like effects would indicate to me that it should be used with care. In other words, follow advice on the label.
- George
I went to vitamin world, and Wal mart, neither had horny goat weed, or red korean ginseng. Vitamin World did have some kind of ginseng, it had red chinese ginseng in it, and american ginseng and other kinds, I did not see red korean ginseng though. I finally found horny goat weed at GNC, the stuff is pretty expensive, costs about $20 for 60 pills but I think it says you take 2 per day, I got a bottle of the stuff. I'm still debating whether to use the horny goat weed with the trazodone or not, since Tim said they both do the same thing kind of. If red korean ginseng is the best mimic of viagra thats what I really need for my protocol to go along with the pentox and l arginine. I can't seem to find just red korean ginseng though anywhere?
I did find liquid viagra online, is that stuff safe to buy?
http://www.ag-guys.com/store/product.php?productid=16141&cat=249
My total testosterone test came back as well, it was 198, I'm not in the average category which my doctor was kind of surprised cause he thought my lack of erections was from stress, but I'm not that stressed at all, and I knew something was wrong when you got 0 daytime erections. Tim what do you think of this? My doctor is trying to research if I should have a more specific kind of test done now to narrow down exactly what is wrong, he said the time of day could have effected my testosterone, but I got the blood test done at 445 PM.
ComeBackid,
The best online supplement vendor I have found for stuff like the Ginseng and the Goat Weed is http://www.vitaminshoppe.com (http://www.vitaminshoppe.com).
Horny Goat Weed:
http://www.vitaminshoppe.com/search/en/query.jsp?q=%22horny+goat+weed%22+pde5&x=45&y=13&intsource=main
I use the store brand. About half what you paid.
Korean Red Ginseng:
http://www.vitaminshoppe.com/search/en/query.jsp?q=%22korean+red+ginseng%22&x=0&y=0&intsource=main
Not much to choose from in that department - I just use what they have.
I have used Vitamin World before and still buy my aloe there, but they just don't have the selection. And I think you need to reread Tim's post. The Goat Weed is the Viagra substitute, not the other way around.
- George
ComeBackid,
I believe Tim said, HTW was like more like Viagra IHO....
Rico
I know it sounds like I push these guys, but I have yet to see them beat in the products they carry. On rare occassion I have to go elsewhere for a specific product. I am interested in any input but I am very satisfied for the 3 or 4 years I have dealt with them.
Horny Goat weed http://www.puritan.com/pages/file.asp?xs=3AABD6B1193A4199B6FD684426B6025D&PID=1045&CPID=1920&np=1
George999 and others,
George you seen to have found the best price so far. I wasn't really shopping for a bargain just wanted to get some Horny Goat Weed and try it out. I've heard a lot of good things about GNC from this site so I just went there assuming they have decent deals, sounds like they don't. The guy there did talk about a ginseng panax that has red korean ginseng and other ginsengs which he claims is better ??? I noticed at GNC they didn't have a lot of individual vitamins but rather different mixtures which include lots of different vitamins and supplements. The guy at wal mart told me they sell out of red korean ginseng as soon as it is stocked, and they no longer supply horny goat weed.
Hi,
I know that Life Extension Foundation is not the cheapest place to find supplements but they do sell some of the best quality products I have found over the years. Other brands I find of decent quality is Nature Made, Natrol, Nature's Way and of Jarrow. Jarrow seems to specialize in men's supplements. Of the brands we purchase, Nature's Way, Jarrow and Life Extension are the most reliable. Hope someone can use the info.
Be well, Swimfly
I have bought from Life Extension and i am obviously interested in quality. My question is how can you KNOW it is quality. Fancy bottle, slick brochure, high price.
Consumer reports rated several companies on delivered potency as advertised. GNC was among the very highest. Puritain Pride manufactures their own product (most buy and relabel) and they stamp it "Lab tested and fully certified quality and potency, guarenteed" I figure that is worth about 2 drops of ink except that an established company probably wants to protest their reputation. Since it is not FDA regulated they can say almost anything.
Hawk,
Yeah, there is that inconsistent issue with supplements. Never tried Puritan Pride but I may check them out...thanks! Most of the brands that I find are good comes from 30 years of experience in purchasing alternative products. There are ways to seek out a bit of an educated opinion too.
Our family Physician, an M.D., is a homeopath. He's a great source for finding good products. I'm also not shy about asking our compound Pharmacist and our regular Pharmacist. Working around Doc's everyday also comes with a perk. There's an ER Doc at one hospital Paul and I frequent who also has an alternative medicine practice. Every little bit helps!
:)
On the subject of VED. VED's expand the tissue like an erection, but as far as blood flow, Dr. Mulhall says "VED's pull in venous blood and do nothing for oxygenation."
Dang - I just wrote a message to someone about this topic and wanted to repost it but lost it. The gist of it is this: Blood retained with the VED should not be venous blood, since veins have valves that prevent backwards flow. The blood that is retained in the penis is delivered to the penis by an artery and prevented from leaving the penis by the vacuum. I see no reason to believe that blood would flow backwards from veins leaving, but not continue to pump in arterially as it normally does?? That just doesn't hold water IMHO. Also, it would be difficult, but not impossible to desing a VED that had a port for an ultrasound unit to measure blood flow during a vacuum to see exactly what is happening.
In terms of Ginseng - I found a liquid form and a powdered form. I have been playing around with both. I found a larger volume box that held 6 boxes in which ten small glass vials resided, all for about $15. I add one to a cup of green tea twice a day. I found small packets of powdered red ginseng at Costco (in bulk, of course!) that can be opened. I add one of those too. All have been associated with better nighttime erections - but I cannot tell if one is better than another.
I have tried "Triple Ginseng" which includes american and Chinese - I am not sure there is a difference between Red Chinese and Red Korean ginseng. Here is an example of what I have found in a small wonderful Vietnamese grocery store (but in bulk!) http://www.vitaminproshop.com/039278701210.html
I buy my Horny Goat weed for 9.95 for 60 tabs (it is capsuled with Maca too). It cannot hold a candle to Viagra for chemical effects (ie side effects especially). Last week it was marked down to 4.95 and I bought all four bottles that were available. I get mine at a local supoermarket (Giant Eagle - a local store).
Finally, I have tried to but not yet obtained access to a resource for quality items called "Natural Standard". We have played phone tag for a few weeks, but I am going to find out it they have more quantifiable amounts of medicines (ie wogonin in amounts I could trust).
Tim
ComeBackid
If your testosterone is 198,,,,thats considered zero..Your level for your age should be around 800,. its no wonder you don't have any erections....
I'm glad you brought this up because i need to ask for help from anyone who can tell me what to do..Not only do I have peyronies, i also have had Hypogonadism for serveral years, Low testosterone.....When it gets that low you have no feeling or should i say no tingling in the groins, and no desire for sex, plus you will have a lot less energy and be tired all the time...
OK, i have been on the testosterone Patch for the past few years and it has worked great for me,,,a few months ago we lost all of our insurance and we are on a limited income, i had to give up my patches because my wife needs a lot of meds and she comes first.....The cheapest i can find them is at walmart for 200.00 a month...I just can't afford them and i have been going down hill...Can anyone tell me of a cheaper alternative? I am suffering from acute stomach pain from having been infected by a water parasite and now my energy level is going down from no testosterone and i have no feeling in my groin...
I would welcome any suggestions and advise from the group. You men are the only ones i have to turn to, and i would apprecieate your input...Before i had the patch, i tried the gel and then the pill and they just didn't work.
Even if there is no answer , at least i can get it off my chest by being able to post,,,,thanks guys,, anyone can feel free to e-mail me also if you wish at kauaiman005@yahoo.com
Kimo
Kimo,
I talked at length to a compound Pharmacist just last week about compounded testosterone. I asked about the different bases and about how they prepare them to ensure correct dosing. I was also a little concerned because of the regulations involved with compounding testosterone. Not all pharmacies will go through the trouble of mixing anything that is a schedule II drug. Apparently we had been dealing with a pharmacy that specializes in compounding hormone replacement drugs for 20 years....who knew??? :)
Our insurance covers most of the cost of the Androgel Paul uses but he wants a more consentrated form so he can apply less to his skin since he uses it twice a day, not once. He does pretty well on the gel. He just wants to try the compound.
I am able to order Paul 40 gm. tubes of gel compounded @ 10mg/1 gm. With that mixture he will be able to use a half gm. of gel twice a day instead of the 5 gm. he uses now. A 40 gm. tube is considered a 30 day supply and the cost came out to be $85.00 for a 3 month supply. That's only $15 dollars more than with the co-pay discount we get on Androgel. Insurance does not cover compounds. We use a compound pharmacy less than 20 miles away but I'm lazy! I simply fax any scripts to them then mail the original. By snail mail it takes 2 days to receive a package.
I have used compounded HRT for a number of years and have always been pleased by the results. Hopefully Paul will have good results too. If you would like to ask questions directly of the pharmacy I'd be glad to share the number. Perhaps there is a compound pharmacy near you? Be well, Swimfly
Kimo,
I'm glad you posted so I can hear your experiences about testosterone. Yes your right , I have absolutely no sex drive at all. About two years ago when I started lexapro, I had a raging sex drive. The lexapro seriously damaged my sex drive and gave me delayed ejaculation, I only got about four or five daytime erections. Just this past april I had been off lexapro for awhile, but thats when my peyronies worsend and my penis shrunk and got hard, at this point all my daytime erections went away totally. I think the peyronies combined with the lexapro did away with my testosterone somehow, I"m not exactly sure. I wanted to get it checked and I was right, absolutely no daytime erections means theres a problem! The question now is what to do? My doctor is a phsyciatrist and has to read up on this stuff. I kind of agree with hawks theory on getting erections to prevent disease progression, however Tim has pointed out that if this were the case then many more older men who don't get erections would have peyronies. I think the real answer is somewhere in between and I still am not sure about whether the VEd just stretches out your penis or brings in oxygen?
The way I see it, is that getting erections during the day can't hurt, and I'm very concerned about this problem, what should I do to boost my testosterone, is taking the stuff safe? Obviously I have virtually no sex drive and need testosterone.
Did a little research on what can cause low testosterone...
Testes-Based Conditions
Men whose testosterone deficiency is caused by an abnormality in the testes often display increased FSH levels, increased LH levels, and impaired sperm production. These conditions include:
Trauma — A direct physical injury to the testes may damage the cells that produce testosterone.
Castration — Surgical removal of the testes, e.g., for testicular cancer, results in severe reduction in testosterone production.
Orchitis — Testicular inflammation can occur after a post-puberty bout with the mumps (there is a higher risk of risk of infertility than low testosterone).
Radiation treatment or chemotherapy — These therapies for other diseases may damage the testosterone-producing cells of the testes.
Testicular tumors — Treatment of testicular tumors may directly affect testosterone production.
Pituitary/Hypothalamus-Based Conditions
Men whose low testosterone levels result from defects in the pituitary or hypothalamus generally have a low or low-normal FSH level and low or low-normal levels of LH. These conditions include:
Pituitary tumors The growth of abnormal tissue in the pituitary can disrupt the gland's normal functioning and interfere with hormone production. Some tumors produce hormones that can interfere with LH production.
>High prolactin levels High levels of the pituitary hormone prolactin from a hypothalamic or pituitary tumor, certain medications, and other causes inhibit LH and FSH production, resulting in low testosterone levels.
Medications — Certain drugs used to treat medical conditions that affect the brain (e.g., opiate pain medications such as morphine) and hormones (e.g., cortisone-like medications such as prednisone, and anabolic steroids) may inhibit LH and FSH secretion by the pituitary, and in turn, testosterone production by the testes.
HIV/AIDS — Viruses or other infectious agents may directly or indirectly affect the hypothalamus, pituitary or testes and can decrease testosterone levels; as many as 50 percent of men infected with the human immunodeficiency virus (HIV) may have low testosterone. Severe malnutrition that occurs with AIDS and other wasting conditions may also inhibit LH and FSH production, resulting in low testosterone levels.
Immune and Inflammatory Pituitary Disease — Conditions such as sarcoidosis, tuberculosis, fungal infection, and autoimmune disease may also impair the pituitary's ability to make hormones.
Genetically-Based Conditions
Men may have low testosterone as a result of chromosomal abnormalities or genetically-based conditions. These conditions include:
Klinefelter's syndrome — A genetic condition in which an extra X chromosome is present (about one in every 400 men have this); testosterone production is low to low normal; men with this syndrome also may have markedly reduced bone density and learning disabilities.
Hemochromatosis — A common genetic disorder in which there is excessive depositing of iron into body tissues, most notably the liver, pancreas, heart, skin, and pituitary gland, resulting in reduced functioning of these organs. Iron deposition in the pituitary gland causes impaired production of LH and FSH, which results in decreased testosterone production.
Kallmann's syndrome — Usually a recessive genetic disorder associated with the X chromosome, which occurs in about one of every 10,000 men. A deficiency of gonadotropin releasing hormone (GnRH) impairs the release of LH and FSH, which decreases testosterone production; men with the syndrome lack the sense of smell; testes do not enlarge at puberty.
Prader-Willi syndrome — A genetic disorder characterized by decreased muscle tone in infancy that improves with age, underdeveloped genitals (including undescended testes in boys) and low sex hormone levels. An obsession with food and compulsive eating, also linked with this disorder, may begin before the age of six.
Myotonic dystrophy — The most common adult form of muscular dystrophy, this genetic condition only occurs in men and is carried on the Y chromosome; because testicular failure usually occurs around the age of 30 to 40, men may have sons at risk for the disease.
I firmly believe that the lexapro I was on which did mess with seratonin did something to the gland in my brain that controls the testosterone, now I have a hell of a mess...
Here are some of the risks of replacement therapy:
Potential Risks of Testosterone Replacement Therapy
With any testosterone delivery system, prolonged use may result in breast enlargement or increased risk of prostate enlargement or cancer in older men. Men receiving testosterone replacement therapy should be monitored carefully for prostate cancer, e.g., with a rectal examination and prostate specific antigen. In addition, patients with preexisting heart, kidney, or liver disease may experience fluid accumulation with or without heart failure. Men with breast cancer or known or suspected prostate cancer should not receive testosterone therapy. The patch and gel products are not indicated for use in women. Testosterone may cause fetal harm.
Physicians should instruct men taking testosterone to report any of the following:
Breathing disturbances, especially those associated with sleep
Too frequent or persistent erection
I don't think its a coincidence that delayed ejaculation, impotence and decrease in libido are some of the side effects of lexapro.
"The most common adverse events reported with LEXAPRO vs placebo (approximately 5% or greater and approximately 2X placebo) were nausea, insomnia, ejaculation disorder, somnolence, increased sweating, fatigue, decreased libido, and anorgasmia."
ComeBackid,
If I were you, I would take plenty of things like maca and aloe vera and see what they do for you.
- George
ComeBackid , Tim
Here's some more info or history about my experience on the testosterone.....When i was young i always had a raging sex drive, would drive my wife crazy ;D...At about 45 yrs of age is when i started loosing my drive and became very tired all the time..I was always a high energy person, and then NO energy,,,thought i was being lazy but knew i wasn't...This lasted about 10yrs before i found a URO that would help me...My first URO just said i was normal for my age and didn't offer to do anything about it...So, thats when i changed, my new doc checked my Testosterone level and i was below 200 which he said was considerd zero...So then he put me on androgel , twice a day/ this worked great for a few months, maybe about a year/ it worked so well that my level went up to 831---high for a 20 to 30 yr old...Man i have to tell ya i was climbing the walls, he cut it back to once a day...After about a year it got to where i didn't work anymore and so he had me try the pill under the tounge, that was disgusting stuff...About that time they came out with the patch ,
< Androderm > 5 mg ,,,change it once a day at bedtime, this was really the best way to go and it kept me at a very even keel all the time, my level was always the same around 700, still kinda high for a 60yr old , kept me real horny all the time and i felt good....Testosterone is so essential for all the bodys organs to stay healthy...
The patch runs 200.00 a month, 30 patches....I'm just trying to find an alternative until i can figure out how to afford to get back on the patch..
As for prolonged use, my URO always does a blood test on me every 6 months, to make sure things are going in the right direction...Even tho the patch brought my level back up, i still needed to use viagra about 50 percent of the time...With my second case of peyronies i have cut back to using 25 mg of viagra, if i get to hard of an erection it makes the plaque hurt during intercourse,,i figure i just have to live with it because of where it is this time,< recessed back inside behind my pubic hair, it really hurts when i'm pushing it in....
Well, i hope something here maybe helps someone, thanks for letting me be a part of this group,,,,,,,,,kimo
Thanks for that information Kimo, I found this link in regards to sex drive and SSRI and how to combat decreased libido.
http://sulcus.berkeley.edu/mcb/165_001/papers/manuscripts/_684.html
My real question is how does on increase their testosterone and then keep it raised permanently after they get off the andro gel stuff?
The normal level of testosterone in your bloodstream is between 350 and 1,000 nanograms per deciliter (ng/dl). Like combable hair, those quantities silently start to wane around age 40. You lose about 1 percent a year -- a harmless decline in the short term, but a cause of obesity, brittle bones, muscle loss and impotence by the time you reach your 60s -- if you live that long. Testosterone levels in the low range (a blood serum score below 350 ng/dl) may increase your chances of dying of a heart attack.
It's not just an old man's problem, either. Men in their 30s and 40s also fall prey to low testosterone counts. It's a disorder called hypogonadism, and it can be caused by an undescended testicle, a testicular injury, a pituitary gland disorder or even prescription drugs. It usually goes undiagnosed until a man hits his doctor with a telltale complaint: "I can't get an erection."
"If you have reduced levels of sexual desire, have your testosterone level checked immediately," says Dr. Allen Seftel, a urologist at Case Western Reserve University Hospitals of Cleveland. You can replenish your testosterone stores with injections, gels, pills or patches, but these medical treatments are no panacea: Side effects include acne, high cholesterol, shrunken testicles and liver damage. Further, don't take supplements like DHEA or androstenedione to boost testosterone; they might increase your risks of prostate cancer and heart disease.
"For men with borderline testosterone scores, I advise them to try to raise their levels through exercise and weight loss before going on testosterone therapy," says Dr. Goldberg. And it might pay to start young. "Since your testosterone declines at a steady rate, it's conceivable that raising your hormone levels naturally in your 20s and 30s could help you maintain higher levels later on," he says. Either way, the reward can be a stronger physique and better bedroom sessions than you'd otherwise deserve. Below are 13 tips designed to get your juice up -- safely.
Get Rid of the Flopping Belly
Or you'll grow a pair of fetching breasts to complement it. Carrying excess body fat elevates your estrogen levels, and that may cause your testosterone levels to sink, says Joseph Zmuda, an epidemiologist at the University of Pittsburgh. Louie Anderson is proof enough of this. Two or three extra pounds won't cause this hormonal shift; it really occurs once you're 30 percent over your ideal body weight. "Unfortunately, that's pretty common now," says Dr. Dobs.
But Lose Only One Pound a Week
When you want to trim down quickly, you probably starve yourself while exercising like a madman. One of the many reasons this stops working in your 30s, when your natural testosterone levels start dropping, is pretty simple: Cutting your calorie intake by more than 15 percent makes your brain think you're starving, so it shuts down testosterone production to wait out the famine. "There's no need to reproduce if you're starving," explains Thomas Incledon of Human Performance Specialists in Plantation, Fla. Ironically, this dive in circulating testosterone stops you from burning body fat efficiently, so you're actually thwarting your hard efforts to melt that tire off your gut.
Skip the Atkins Fad
Research suggests that eating a high-protein, low-carbohydrate diet can cramp your testosterone levels. High amounts of dietary protein in your blood can eventually lower the amount of testosterone produced in your testes, says Incledon, who observed this relationship in a Penn State study of 12 healthy, athletic men.
Your protein intake should be about 16 percent of your daily calories, Incledon says. So, if you're the average 170-pound man who eats 2,900 calories a day, you should eat about 140 grams of protein daily, which is about the amount in two chicken breasts and a 6-ounce can of tuna.
Have Morning Sex
German scientists found that simply having an erection causes your circulating testosterone to rise significantly -- and having one in the morning can goose your natural post-dawn testosterone surge. It's a sure bet you'll burn a little fat, too.
Stick With Tough Exercises
To beef up your testosterone levels, the bulk of your workout should involve "compound" weight-lifting exercises that train several large muscle groups, and not just one or two smaller muscles. For example, studies have shown that doing squats, bench presses or back rows increases testosterone more than doing biceps curls or triceps pushdowns, even though the effort may seem the same. This is why doing squats could help you build bigger biceps.
Make Nuts Your Midnight Snack
Nuts are good for your nuts. Research has found that men who ate diets rich in monounsaturated fat -- the kind found in peanuts -- had the highest testosterone levels. "It's not known why this occurs, but some scientists believe that monounsaturated fats have a direct effect on the testes," says Incledon. Nuts, olive oil, canola oil and peanut butter are good sources of monounsaturated fat.
Squeeze Out Five Repetitions per Set
Throwing around 5-pound dumbbells won't help you effect a rise in testosterone. Start off by using a heavy weight that you can lift only five times. That weight is about 85 percent of your one-repetition maximum. A Finnish study found that this workload produced the greatest boosts in testosterone.
Do Three Sets of Each Weight-Lifting Movement
Researchers at Penn State determined that this fosters greater increases in testosterone than just one or two sets. Rest a full minute between sets, so you can regain enough strength to continue lifting at least 70 percent of your one-rep maximum during the second and third sets.
Rest Harder Than You Work Out
If you overtrain -- meaning you don't allow your body to recuperate adequately between training sessions -- your circulating testosterone levels can plunge by as much as 40 percent, according to a study at the University of North Carolina. The symptoms of overtraining are hard to miss: irritability, insomnia, muscle shrinkage, joining the Reform Party. To avoid overtraining, make sure you sleep a full eight hours at night, and never stress the same muscles with weight-lifting movements two days in a row.
Drive Home Sober
To maintain a healthy testosterone count -- and titanium erections -- cut yourself off after three drinks. "Binge drinking will kill your testosterone levels," warns Incledon. Alcohol affects the endocrine system, causing your testes to stop producing the male hormone. That's one reason drinking often causes you to go limp at the moment of truth.
Have a Sandwich at 3 p.m.
As any sensible woman knows, the way to put hair on a man's chest is to fill his stomach. Your body needs a ready supply of calories to make testosterone, so regularly skipping meals or going for long stretches without eating can cause your levels of the hormone to plummet. Then again, that's probably the warden's plan.
Buy the Fried Tortilla Chips
If you want to raise your testosterone score, eat a diet that includes about 30 percent fat, and not much less. Your body needs dietary fat to produce testosterone, so eating like a vegetarian aerobics instructor will cause your testosterone levels to sink drastically. This is bad, unless you actually are a vegetarian aerobics instructor.
Stop Surfing for Porn at 2 a.m.
Sleeping less than seven to eight hours a night can screw up your circadian rhythm. That's why it's no wonder your testosterone levels are higher in the morning after a good night's sleep. So if your work or social schedule keeps you stooped in perpetual jet lag, don't be surprised if you stop craving sex. At least that'll make it easier to stay out of bed.
ComeBackid,
This is right one....he hits it on the head....especially on the sleep and diet....also strentgh training...the three main lifts for power lifters are bench, squat, and dead lift....you can get huge biceps from doing rows.... a push pull method is also very good, you push weights one day and pull the next....
Rico
(Note: This question could probably be posted in multiple threads but since it's at least somewhat related to the testosterone discusssion going on here I thought I'd post it in this one.)
So I'm trying to solve this mystery. My "hang" is really inconsistent. Sometimes I've very "full" and hang nicely. Other days my unit seems to shrivel up (i.e. my hang isn't nearly as full). So I'm trying to figure out why this is. I have no doubt that a fuller hang not only feels better but is probably a much more conducive environment for the healing of Peyronies. What I'm trying to figure out is how can I maximize the conditions in which I'll hang fuller. Here's what I've come up with so far...I'd love to hear the thoughts of others.
Factors leading to a fuller hang
1. Arginine/pentox/viagra - I started on this combo back a couple of months ago and have noticed a fuller hang since. However, it was a lot fuller when I first started on those meds and less so recently so I'm wondering if my body has somewhat adapted to them?
2. Gingko Biloba - Since Gingko increases blood flow it would make sense that this produces a fuller hang. I haven't noticed a big difference myself (at least nothing that I can distinguish from the effect I received from the triad above).
3. Sleep - I seem to have a fuller hang when I'm well-rested.
4. Water - I seem to have a slightly fuller hang when I'm well-hydrated.
5. Exercise - Getting regular blood flow seems to help. Yoga in particular seems to be great because you end up doing a lot of stuff with the hips and the groin area.
6. Sexual activity - There seems to a be a bit of a major frequency here. Too little sexual activity seems to produce a less full hang. However, too much activity also seems to work in the same way. For me (at least) a couple of episodes per week seems to be best. Also, actual sex seems to lead to a fuller hang than masturbation (why would that be...psychological?).
7. Wearing boxers - Not having tightie whities on seems to help as well with circulation and hang. :)
Factors leading to a less full hang
1. Stress - I developed Peyronies Disease during a period that I would characterize as among the most stressful of my life. I have no doubt that stress was a huge contributing factor. I think there is a definite correlation here.
2. Alcohol - I'm more guessing than anything here but I think there is probably a correlation. I'm trying to reduce my alcohol consumption. It's tough because I have a packed social calendar but I'm making progress.
3. Cold water - Joking around here. Call this the Costanza effect. :)
Have you guys noticed anything else that seems to affect hang? I'd be particularly interested in any other supplements that produce full hangs. Given that Peyronies Disease seems so tough to cure I think that trying to have a fuller hang is probably something that we should all be interested in. Plus there's something about having a nice full hang that makes me feel more of a man. :D
DannyOcean,
I was looking up trental, and did read a couple articles to not mix ginko with it....where you hanging better before you started ginko, personally I wouldn't be taking any other supplements with that combo...
Stress huge factor...
Sleep is on the top of list for function...especially as we get older..
Alcohol...three drinks max...two is better...this plays huge role with proper sleep....
Have lunch at Hooters:)... this works... I go there once a week... hey it is for medical reasons:)...
Rico
Thanks Rico. Can anyone point me to the articles about Pentox and Gingko...def don't want to screw that up if it's a problem.
And I have noticed that when I'm more "sexual" in my everyday life (chatting with girls, going on dates, etc.) then I tend to hang better. I went through a part of my life when I pretty much tucked that stuff away...that's when I developed Peyronies Disease...go figure. :)
Before we leave the subject of testosterone and testosterone deficiency, let me suggest that there might be more than one way to skin a cat. The problem with suplements that boost testosterone, and there are some like DHEA and Androstenedione that are known to do so, is that they carry both known and unknown risks. Of course direct testosterone supplementation carries risks as well, not the least of which is further atrophying the testes and thus further reducing basil testosterone levels ... YUCK!!! But I would like to suggest that what everyone seems to be overlooking (since we all like the instant cure approaches) is the potential value of using supplements in an attempt to nuture our own testicles, since if we are experiencing low testosterone levels, there might just be a problem down there thats a possible cause. So how about a little bit of ... taa daa! ... plain old zinc for example? Please read on ...
Experimental zinc deficiency in man. Effect on testicular function:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=6772723&query_hl=18&itool=pubmed_DocSum
And remember that certain prescription drugs AND certain supplements can cause vitamin and mineral deficiencies!
Also see ...
Zinc in mammalian sperm: a review:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=6378991&query_hl=18&itool=pubmed_DocSum
If I was having testosterone problems, I would certainly make sure I was getting a safe, but daily, level of zinc supplementation.
A couple of other related references ...
Zinc: The Biggest Secret in Weight lifting:
http://www2.gvsu.edu/~pontiusd/zinc.html
Restaurants offer sexy food for Valentine's Day:
http://mesh.medill.northwestern.edu/mnschicago/archives/2002/02/restaurants_off.html
Other supplements I would recommend to boost testicular health:
Vitamin A (MAKE SURE YOU TAKE THIS IN SAFE LEVELS, IT IS EASILY TOXIC!!!) ...
Testicular atrophy, zinc concentration, and angiotensin-converting enzyme activity in the testes of vitamin A-deficient rats:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=10065595&query_hl=27&itool=pubmed_DocSum
Vitamin C - Timed Release ...
Recent knowledge concerning the biochemistry and significance of ascorbic acid (circa 1984):
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=6369813&query_hl=22&itool=pubmed_docsum
Soy (maybe) ...
Increased serum and testicular androgen levels in F1 rats with lifetime exposure to soy isoflavones:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15219630&query_hl=2&itool=pubmed_DocSum
Then there are some things that are bad for testosterone ...
Protein ingestion prior to strength exercise affects blood hormones and metabolism:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16286871&query_hl=2&itool=pubmed_docsum
And of course some things just can't be helped ;D ...
Marriage lowers testosterone:
http://www.hno.harvard.edu/gazette/2002/09.19/01-testosterone.html
Cheers,
- George
George,
I think there is a lot more to be discussed involving testosterone. I'm waiting for tim to get back to me with some information on it and my own doctor as well. I thought this article seemed really good on some things I and others with low testosterone can work on in the meantime.
Rico,
I now have free weights and started a running program I hope to do daily, gotta lose that belly fat to increase testosterone, I also vitrually eliminated alcohol from my diet totally. My doctor is looking now into what additional tests I should get, more specific ones, this test was the red flag being thrown, its time to seriously examine my condition.
ComeBackid
Anyone else notice the coincidental intersection of these two conditions? I suspect that most of us posting on this board are old farts (I claim that distinction myself) with what can be assumed to be flagging testosterone levels. And among the younger posters, it seems like many either are dealing with testosterone issues or are addicted to booze (which will guarantee low testosterone levels) or both. I also recall seeing a study somewhere where supplementing cirrhosis sufferers with testosterone caused measurable improvement. This is fascinating to me because cirrhosis is basically fibrosis of the liver. One neat thing about that is that its status can be accurately measured with a blood test and you can't do that with peyronies. Therefore! If raising testosterone levels causes MEASURABLE reduction in liver fibrosis, might it also not benefit peyronies sufferers? And is it really a coincidence that most if not all of us probably have low testosterone levels? So, hey guys, I just started to include zinc in my supplement regimen. Let's see what happens!
- George
Forum members and guest:
Cialis has applied for FDA approval for their daily Cialis, the price is $3.50 per pill or about $100. per month....a PDE5 inhibitor that you take like a daily vitiamin, it will be used in Eurpope soon...
Rico
George999,
I was taking lexapro which messed with my sex drive and drinking a lot in college at the same time, I think the two may have worsened my peyronies disease.
I just got off the phone with my doctor, he proposes to do another total testosterone test(since there is a 20% chance you will have one out of your normal range) and also get the LH tested and prolactin as well.
Prolactin (http://www.nlm.nih.gov/medlineplus/ency/article/003718.htm)
LH (http://www.labtestsonline.org/understanding/analytes/lh/test.html)
Elevated levels of prolactin tend to decrease testosterone production... hmmm interesting...
"I think a lot of people get night sweats from the SSRI's. I know I did and they were drenching and very annoying. I could not tolerate the SSRI's though, so I stopped using them. Why are you still using Lexapro after two years? If your serotonin was out of whack, an SSRI should have it back to normal within a year. I would bet you anything that this is due to using Lexapro and nothing else. It is time to taper down and get off the drug, in my opinion. SSRI's suppress the HPA axis, which means they can alter your endocrine system (hormones). Could be that the Lex is throwing off your hormonal balance. Have your hormones checked (cortisol, thyroid, progesterone, estrogen, prolactin, testosterone, etc) by an endocrinologist, after you have been off the lexapro a while. No need to be scared though."
I've now convinced my doctor to get all the above bolded things tested, I'm starting to get frusterated with him, he thinks my lack of no daytime erections since april is due to stresss... I know my body, it is not normal for a 22 year old kid to get no daytime erections at all, maybe one every once awhile. I've added the trazodone for nighttime erections thanks to hawk. I'm now trying to massage up two erections, in each half of the day for blood and oxygen. There seems to be a general connection here between low testosterone, alcohol abuse, being overweight and SSRI's and Peyronies Disease.
So ComeBackid, lets see if I'm hearing this correctly.
Your lack of normal erections (according to the doc) is due to stress.
You know that your hormones are out of wack.
By jove, I think I've got it!
Having your hormones out of wack is causing your stress which is causing you not to have normal erections!
But your doctor seems to be a little slow in making that connection :-[
But we hope that a ray of light will shine in from somewhere :)
Best wishes,
- George
Hey Rico,
Is that daily Cialis thing designated for Peyronies? I seem to remember reading that they were in Phase III trials with Cialis for Essential Hypertension, but I don't remember anything about Peyronies. Of course, once its approved in a daily dose as a BP med, one could probably get that dose prescribed by a uro for an off label use. Interesting.
- George
George,
This is for ED, they feel it is a better delivery system...they never mention anything about BP or peyronies, but yes, one could use it as a off label for peyronies....
I'm just glad that there is a 3 billion dollar industry that they are trying to get to, this is three billion reasons they might stumble onto a cure for peyronies....
Rico
I don't know how many people here have read this article but I found it offline. I wondered if they reported the results of this study yet?
http://www.medicalnewstoday.com/youropinions.php?opinionid=8769
A while ago I had vented my frustration here, about being unable to find a doc to prescribe the latest "hopeful" drug, Pentox. I first went to my doc, who diagnosed my Peyronie's (I already knew it was, based on the classic symptoms) and prescribed 800mg Vitamin E per day. I then got a referral to a Urologist who was absolutely convinced the best and most reliable treatment was 1200mg vitamin E per day. He discouraged trying anything else, because (according to him) they'd all been proven no better than a placebo.
I was dissatisfied with this treament, and requested another referral to the leading urologist in my state, and the reigning local Peyronie's "expert" (Culley Carson). It was a long wait to get an appointment with him, but it finally happened today.
He's like, "Oh yeah, I have several patients on Pentox right now. Tom Lue's a friend of mine, I talk to him all the time. I'm on several research panels with him. Why don't you try Pentox for 90 days, then we'll check back with you and see how it's going?" I'm thinking, it's about time! Someone who is current with the latest treatments! I was beginning to think I was going to be a casualty of medical ignorance. I guess the jury's still out - I may still be, eventually.
Other intesting things he told me:
60-70% of his patients who opt for Verapimil injections see "satisfactory" improvements (but never complete resolution). His other first oral treatment he attempts with new patients is Colchicine, which again has seen "some" positive results, along with, shall we say, "stool" related side-effects. Also, "none" of his treatments show much improvement after about 18 months in the inactive, stable phase. He said by then, the scar tissue has settled down into its final form, like a scar from a cut on your arm, and will not improve without surgery.
But basically I just wanted to report this small victory in obtaining my first "hopeful" prescription treatment, Pentox, and in finally locating and becoming the patient of an informed Urologist.
myrddin,
Did he prescribe you pentox/arginine/viagra or just pentox and how much? also did you ask him about VED and if he uses VED with the injections? What dose of pentox did he prescribe.... I read still that colchicine is still the drug of choice by many doctors, my Urologist, one of the top in the south still prescribes potaba and topical verapamil.... he thinks the injections are hit and miss and about as effective as the topical....
As we all know that even if the plaque is gone, then you still have to deal with lost of size and some bending...the early drugs seem to help pain and stop any further damage, put it in a more stable state.....the lost of elasticity is still a issue of the tunica....I'm curious if he did metion the VED??
Rico
He said nothing about using a VED at this point, but he did stress he likes to first try oral treatments, and go from there, depending on the results.
Also I'll be able to say more on the Pentox dosage once I fill the prescription. It's hard to read but it looks like the pills are 400mg each and I get 3 refills, so that means each bottle is a month's worth? There's also a "180" on the paper (180 per bottle?). So I'm not sure what the dosage is until I fill it later today or tomorrow.
Also, no additional "combination" prescriptions or instructions, like L-Arginine or Viagra, were given, though I can suspect why:
1) I had previously reported on my "Currently taking" medications form, that I was taking L-Arginine & vit. E. So no need for him to advise either of those.
2) When he asked if I had problems getting strong erections, I said no (I don't, honestly). So maybe that indicated to him no need to prescribe any additional PDE Inhibitor like Trazadone or Sildenafil. Just a guess. Or, sure, maybe he's clueless about using them as an add-on. But I doubt it.
Heck I feel pretty well informed about this condition (thanks to PF), so I know getting erections frequently and at nighttime are a good thing. I've had good luck with Korean Red Ginseng causing those, so if I notice I'm not having many erections, you can bet I'll take some of that to help.
also of note: he squeezed and squished my poor little guy and the plaque inside, til I said "yeeeouwch!" a couple times. Maybe checking to make sure I'm still in the active, painful phase? Yessir I am, no doubt about that anymore.
myrddin,
What brand name red ginseng are you using and how much are you taking per day? Thanks.... pentox is a blood thinner, you might want to check on how much blood thinners you should be on with this drug....
I would do some research, I don't know how much vit e you take ect.... there seems to be some thought that if you are taking pentox to not take other blood thinners.... ginkgo for one... it is strange, because then I read something where they prescribe pentox with vit e also??? Personally if I was on something as strong as pentox I would stop all other blood thinners....how much does one need?? especially on the dose you are on, three times Day....much stronger than herbs....
Rico
Encouraged by this forum, I recently started taking L-arginine. It has not yet affected my Peyronies Disease in any way. However, it has quickly cured the tendonitis in both thighs (sporting injury). This is quite remarkable as I have had it for a long while and the medication that the doctor gave me caused side effects that were worse than the tendonitis.
According to web sources there is a common link to Peyronies Disease in that arginine helps produce NO which reduces inflammation in the tendons which are collagen-based.
So arginine has got close to the target - ie the thighs rather than that which dangles between. I am impressed, encouraged and can turn cartwheels again.
Percival
Dannyocean said:
And I have noticed that when I'm more "sexual" in my everyday life (chatting with girls, going on dates, etc.) then I tend to hang better. I went through a part of my life when I pretty much tucked that stuff away...that's when I developed Peyronies Disease...go figure. :)
[/quote]
I understand that to mean that you were not sexually active just before you developed Peyronies. That is interesting--I came down with mine after several weeks of no activity. My first real erection after that period involved a strange pain which felt as if I was overfilled, but I know now was the start of Peyronies Disease.
Dillon
Tim:
Regarding your conclusion: "..I am going to focus on antioxidant therapy, and stop taking arginine for now .."
I'm a little confused about why it is feared that arginase would be increased by a person taking L-Arginine. Would the body necessarily produce more of an enzyme in response to an increase in the substrate (amino acid) that it acts upon? From my own lactose intolerance I know that even when taking in large amounts of lactose, i.e. drinking lots of milk, my lactase production remains nill. (The bacteria in my gut that feed on the milk sugar go wild, of course!)
The articles, as you warned, went over my head. I'll accept their warning that arginase may be a bad actor in Peyronie's cases, but I need to understand better why levels of that enzyme would be determined by the levels of arginine. I would expect only the reverse to be true: that arginase will reduce levels of arginine, and that this, in fact, could explain how the former does its harm - by removing something beneficial from the scene.
Hi Kevin,
Arginine is the substrate for the enzyme arginase. Thus, arginase creates proline which in turn leads to collagen production. If one already has increased levels of aginase (for any reason) than that is the fate of any ingested or endogenous arginine - it shunts to proline and collagen. In that situation, all that extra arginine does is lead to more collagen. IOW, if there is a surplus of arginase - all more arginine does is create more collagen.
Thus, the issue is not how much arginine do you have, but how much arginase do you have. If arginase is elevated, the all the arginine does is become collagen. If the arginase is lowered, the the arginine follows the other pathway towards NO and citrulline.
So the key to figuring this system out is in recognizing that not only should you try to force the production of NO by adding the substrate arginine, you have to simultaneously STOP the production of collagen by reducing arginase levels. The key concept to get is that Nitric Oxide Synthase (NOS) competes with arginase for the arginine - that arginine has at least two different fates available to it. Which way it goes depends on arginase, and arginase in turn depends on TGF. So I think the key for me will be to first turn off TGF production somehow (with pentox or pirfenidone) and then to add arginine to fuel NO production.
I hope that clarifies it a bit.
Tim
Rico,
I don't have a supply of Korean Ginseng right now, but what I used a couple months ago was one of the only kinds available in the supplements area of my local Whole Foods grocery store. Sorry, I can't recall the brand. I recall it was a white bottle with a bright green lid, though.
I filled my Pentox perscription, so here's the deal: It's a generic, lavender tablet with "mylan" inscribed on it. There are 180 pills (400 mg ea.) in the bottle, refillable 3 times over the next year. Seems like a fairly large supply, especially since the starting dosage I'm on is 2 pills per day. After I'm sure I tolerate it well (no/low side effects), I can bump that up to 3 per day max. I'm also taking my usual Vit E, L-Arginine, and ALC. I've ceased taking Propolis for now.
Like I said before, I won't be adding the Red Ginseng unless I feel like I need more erections at night. Currently that's not a problem.
I keep everyone posted if I notice any progress, good or bad.
Prince of Peace is a major brand of KRG.
Korean Red, Korean Red
He'll steal your woman, then he'll rob your head.
Yeah, I developed my Peyronies Disease after a period that I would consider the least sexually active of the last 10 years for me. I still don't know if there was an incident of trauma that caused it. There was one moment I can recall that might of been it but I definitely didn't feel any pain and didn't think much of it until the Peyronies Disease developed a few weeks later. Anyway, if I could recommend something to all those who don't have Peyronies Disease it would be to keeping getting frequent erections throughout your life even if you aren't sexually active. I think that an extended period of low blood flow to that area could likely be a prime contributing factor in the development of Peyronies Disease.
Quote from: Mister Dillon on October 02, 2006, 07:57:53 PM
Dannyocean said:
And I have noticed that when I'm more "sexual" in my everyday life (chatting with girls, going on dates, etc.) then I tend to hang better. I went through a part of my life when I pretty much tucked that stuff away...that's when I developed Peyronies Disease...go figure. :)
I understand that to mean that you were not sexually active just before you developed Peyronies. That is interesting--I came down with mine after several weeks of no activity. My first real erection after that period involved a strange pain which felt as if I was overfilled, but I know now was the start of Peyronies Disease.
Dillon
[/quote]
Quote from: Rico on October 02, 2006, 01:15:08 PMI would do some research, I don't know how much vit e you take ect.... there seems to be some thought that if you are taking pentox to not take other blood thinners.... ginkgo for one... it is strange, because then I read something where they prescribe pentox with vit e also??? Personally if I was on something as strong as pentox I would stop all other blood thinners....how much does one need?? especially on the dose you are on, three times Day....much stronger than herbs...
I agree we should be cautious, so I did a little more research on this. I found what you were referring to, that Pentox and Vitamin E
combined has been found effective in treating Radiation Induced Fibrosis.
For what it's worth, here's one article (http://www.forourpatients.info/pdf/3-1/FOPE186-B22.pdf). there are others out there too.
At least this tells me it does not appear to be dangerous to combine the two.
Tim,
Would not Arginase itself be an interesting target along with TGF-beta? There are actually a number of well known Arginase inhibitors. Actually sun flower seeds contain an Arginase inhibitor. And the latest generation of body building Arginine supplements coming to market are advertising the inclusion of various arginase inhibitors. Thus this might be an interesting adjunct to Pentox? Your thoughts?
- George
Tim,
Are you then saying that one is safe as long as they are taking pentox along with the L Arginine? I'm surprised Dr. Levine would recomend taking L Arginine if it could indirectly increase collagen production.
ComeBackid,
I think the key issue here is in *active* lesions. In an actively contracting status, I think the addition of arginine may promote collagen formation. In a healing or "it's all over" mode it should be OK, since the TGF-Beta1 levels should again be low, and thus the arginine should shunt towards NOS and NO production.
George, I know nothing yet about aginase inhibition, but I will be spitting sunflower seed shells like a major league baseball player as soon as possibel - and I expect that you will let us know as soon as possible of other ways to reeduce arginase activity.
I found another interesting link. A company is releasing to market fairly soon (the pipeline is full of drugs in progress) a drug that increases TGF Beta 3 levels which are associated with embryos, and scar reduction, whereas TGF-Beta 1 and 2 are associated with maturity (ie no longer an embryo) and scar progression. The drugs are being tested for surgical scars and other fibrosing conditions.
http://www.renovo.com/content.asp?c_id=10
The links in the upper right hand corner are to other similar drugs they are promoting. I think that we may soon see some of these in trials in the US - perhaps within 3-4 years.
I of course would like to sign up sooner. Perhaps there is a home program - I could simply SAY that I have a keloid on my chest, and go ahead and try it out by injecting it into my penis.
Ah, the risks and joys of knowing a little too much, but not enough...
Tim
Tim,
After some review, it turns out that the substance being touted as an 'arginase inhibitor' additive to L-Arginine is actually another amino, L-Norvaline. Apparently there have been no actual controlled studies in regard to any arginase inhibiting effects of L-Norvaline, so at this point it looks like its claims are limited to the supplement marketing category. However, I do find it very interesting, also the inferences about sunflower seeds, another elusive situation, when it comes to pinning down evidence. In the case of sunflower seeds there were studies years ago, but no abstracts are posted. At this point, I'm with you. I actually have a store of neglected sunflower seeds at home and I am now going to be paying much more attention to them. I am also going to be on the lookout for L-Norvaline. In my case, I have the ability to tell pretty quickly whether or not these substances work. I can just check my BP after ingestion and see if they have any noticable effect on my NOS efficiency. If I notice anything provocative in the process, I'll let you all know.
Another interesting point is that a key component of arginase is manganese. So I'm not sure if I would want to be taking any supplements containing manganese. Added by George999 on 12-06-06: Actually manganese is an essential nutriant, so my suggestion that it should not be taken in a multi formula was just plain off the wall - please don't take it seriously, there is no problem taking a manganese containing multi.
As for the pipelines being full of drugs, I do think that is really great news. I think the only problems with that for us here is 1) it is likely to be three to five years for many of these drugs to gain FDA approval and 2) when they do become available, they are going to cost a king's ransom. That is not a problem for a few of us who are fortunate enough to have prescription drug coverage, but for many others of us, it mean waiting an additional 17 years for generics to become available. But indeed the future is bright, and for all of the young people on the forum, I would say take heart because you will see an effective and affordable cure for this problem before you reach midlife. In the meantime, we are stuck with things like sunflower seeds.
- George
Here we are, all taking L-Arginine to get blood flow to our penises, only to find out that it is all being eaten up by our peyronies which is getting 'fattened' in the process. O cruel world!
Dear forum members,
It seems like I'm on this thread for arginine, I don't know if it should be on oral supplements...but since we are on the subject here....
Dr. Ann de Wees has twenty years of study on arginine....I found that in this article that it stated also you could increase the blood flow to your penis by over 20% just by exercising your thighs...
Anyway this is a good read http://www.arginineresearch.com/L-Arginine.htm
Rico
QuoteI found that in this article that it stated also you could increase the blood flow to your penis by over 20% just by exercising your thighs...
Maybe "Smilin' Bob" could co- star with Suzanne Summers on the infomercial. I can see it now, pumping those thighs with an ear to ear smile.
Rico,
You did good with the link. I just put
http:// in front of it which makes an active, clickable link out of it. I have seen this page before. The entire site is interesting and I always intended to go back and study it in-depth but never took the time to find the link again. Thanks!
The first time I was on the site and again now, many details about the selection of arginine jump out. This one is a prime example.
QuoteDo not rush out and buy plain L-arginine, because L-arginine without the correct synergists and co-factors or an improperly prepared L-arginine formula can cause reactivation of the herpes virus as well as the stimulation of peroxynitrate. Formulas containing free forms of both L-arginine and Lysine are to be avoided.
If they were selling Arginine then I would be suspect but they seem to be straight information and suggest no brand that meets their definition of "properly prepared". In fact they issue the need for exacting formula and protocol, then do little to give
practical advice on how to tell or where to find it.
Maybe I have to do more reading on the site for the answer. Does anyone have any solid insight on this?
Hawk,
They do say that the product should be on the market for ten years, if they would have a problem by then the FDA or someone would of jumped in....
I had mention in previous posts that I agree with this and to get a brand name, I stick behind xyience because of there research, more expensive, but I feel worth it and it is a blend, I bought some L-arginine at the super market, there brand to see if I could tell a difference, huge difference for me, the blend(complex) from xyience was much more superior....I think because it is a complex and the ornithine seems to give it a kick....the delivery system also is powder, but I can feel it work after a hour of taking it....
Like I was saying the bodybuilders ect have weeded out the poor products...word of mouth...I always ask what is the top seller for the last year when I go into the store, or I ask guys at the gym or the trainers....
I went on the xyience site and they have xsex now also with nox that they recommend taking together and you can take with NOXGC3.... it makes sense to take these together because they where made for synergy.... I would use these if I didn't have peyronies...but only if you are training hard....which I'm now again.... I have decided to use only these with the VED..... and I cycle off every six weeks for two weeks also, my choice...and one needs to increase his water intake in my opinion to 10 to 12 glasses vs. 8....
It also seems the top brands have a gluamine complex with the arginine....to me ornithine is a must to get the most effect....
Rico
Rico my friend,
Remember who you are talking to. I am WAY to analytical (and a lot of other names my wife calls me) to go with statements like "what I use", "a top seller is", "it seems to have a kick", "body builders use", "_____ is superior", or "It is made for synergy".
I need hard facts supported with evidence. We have talked so I know you know that I am not picking, we are just wired very differently in this regard.
you say
QuoteI stick behind xyience because of there research,
Exactly what is their research. Where do I see an objective report on this research?
Specifically, what do you mean wen you say,
Quotehuge difference for me, the blend(complex) from xyience was much more superior.
That tells me nothing.
Exactly what does that mean? What makes you conclude that it is superior? Exactly what is in it or what is the full product name so I can look it up?
Does anyone know how one can tell if a product is "free form" instead of whatever the alternative to "free form" is? It seems the content label would be specific, something like different tocopherols for vitamin E.
Who would one trust as to how long a product has been on the market and whether there have been FDA complaints? (The FDA barely regulates supplements)
I have to scrutinize this site a bit more if I get time to see if it is possibly set up to redirect traffic to a specific brand. I have family member that is in the midst of a medical crisis and will have to wait until I get time.
Hello all,
I found this article interesting, especially in regards to the comments it makes about Arginine and Norvaline. Although it is really focused on sexual performance enhancers in general, many of the points are applicable to Peyronies. It fills in some interesting details on how certain supplements work and cause their effect.
http://www.mindandmuscle.net/mindandmuscle/magpage.php?artID=999340
- George
George999,
What do you mean by this comment from an earlier post on this thread:
"Here we are, all taking L-Arginine to get blood flow to our penises, only to find out that it is all being eaten up by our peyronies which is getting 'fattened' in the process. O cruel world!"
Its funny you say that excercising can increase the bloodflow by 20% to the thighs and lower extremeties?
Yesterday I worked out hard for the first time in weeks, after I got done my penis seemed to hang fuller and bigger for awhile, today I'm going to do another run and lift some weights, my main goal though is to lose fat (specifically stomach fat) which will decrease androgen produced by my body and raise testosterone.
ComeBackid,
I was really not trying to make a point in that comment, it was just intended as humor. I know my humor is sometimes "off the wall", my apologies for that.
As for the exercises part, that wasn't me that said that, it was an article quoted by Rico.
- George
George999,
Forgive me, I got lost in the jungle of L Arginine posts, and earlier I thought that tim was stating it will make your peyronies worse possibly, so when I read your comment I thought you had found out some information that backed that up.
Finally found an actual legitimate study identifying L-Norvaline as an Arginase inhibitor.
http://ajpheart.physiology.org/cgi/content/abstract/274/1/H342
- George
Sometimes I am more involved in trying to make the PDS function than I am in participating as a member. Often I research my own facts with unrelenting determination.
Today when I am kind of beat and have other issues that make this more than I can muster energy for, I am struck by what a great forum the members have made. Whether you pursue a certain course or not, this place is an education. I am thankful others have the energy I am lacking today. Tim's original post, others comments, George's and Rico's links, have contributed much to the subject of Arginine, erections, arginase, arginase inhibiting effects of L-Norvaline, and TGFs that would be difficult to find anywhere.
When I rebound, I think it is all worthy of a central topic in the Resource Library. Just have to see if we can get reprint permission or if we have to link. Links worry me because they often go inactive as sites change.
Thanks again to everyone.
ComeBackid,
To get my point, rather than state it again, I suggest rereading my post down below by me to you. Again,the issue is an active lesion - one that is currently getting worse.
It is reasonable to believe that TGF Beta 1 levels would be higher during an active phase,than during a stable phase - since TGF is though to be the reason we get active! During THAT TIME I believe that supplemental arginine may be shunted preferentially towars proline, urea and collagen formation, and NOT towards production of NO.
So, you did read a post by me stating that I thought arginine may make Peyronies Disease worse, when it was in an active phase. the only data I have to back it up is tangential, and my desparate attempts to figure out why my Peyronies Disease is getting worse right now.
BTW - for two days, not extra arginine, and no extra or new findings. Just remember though,the plural of "anecdote" is not "data". It is "anecdotes".
Tim
Tim,
I did read your post and did understand you meant during the "active," phase. My penis has that dull ache, not all the time, as I believe I may be re-entering the "active," phase again, personally I think the disease is always active, it just spreads so slowly that you can't always notice it. My doctor wants to do verapamil injections, the data from our own PDS poll does not look good on those. I'm going to see Dr. Mulhall I made an appointment, can't get me in for a month though, I will be getting an ultra sound to try and see whats going on and if I have calcifications or not. Logically it seems one should try to get an ultra sound in the very beginning and get one per year, that we may be able to corraborate pain and spreading of the disease with proof. However I'm not sure if the ultra sound will show plaque, I thought it is done to show calcification only. Nonetheless it can't hurt to get more data!
ComeBackid
ComeBackid - thanks for clarifying. You had said: "I thought that tim was stating it will make your peyronies worse possibly". I thought the "thought" was a statement of a lack of surety about what I had said..
And again, the plural of "anecdote" is not "data". It is "anecdotes". We have a poll with a handful of participants. I believe that the jury is still out on verapamil and it's role in helping Peyronies Disease - but for those of us here it has not seemed to help much. Recall that there may be a selection bias here, though, against those in whom it (or anything) has worked.
Tim
Man... you guys are really starting to confuse me??? I don't know what to take anymore? I have been take 2 grams of L-Arginine, 1 gram ALC, 800IU Vit-E, and 1 gram of Tribulus and I got to say my Peyronies Disease has been in check for about 6 months now. I hope it does not start to get active?? If it does are you saying stop the L-Arginine? WOW... I am getting confused.
I am sorry if the discussion is confusing you. Sometimes in our desire to shed light on a subject, we make it less, not more, accessible to others.
I am talking about a biochemical pathway that leads to increased collagen production. For that to happen, one has to be actively inflamed. Otherwise, arginine should help.
If your Peyronies Disease got worse, and kept getting worse, while on arginine, I would consider stopping it. If it was getting better, I'd stay on it. If it was not changing, I would look at the possibility of getting treated with Pentox.
Tim
Fighter,
I think you are doing the right thing and seem to have your peyronies in check....you are into working out, which is good for over all health....plus you seem to have found supplements that are working for you.... I'm taking arginine also... I like the increase circulation it provides and the complex I'm taking Might help with wound healing also... and Inflammation.... some of the top urologist are prescribing arginine... arginine can also be produce through diet.....
I would like to say that maybe one should think about the word SUPPLEMENT... it does not mean to replace... it is to add to..... we have gotten lazy or the concept of fast food has gotten into are everyday life, take a pill, take another pill..... one is not going to take large amounts of arginine and cure peyronies.... to supplement your diet that should be full of fresh fruits and vegtables and nuts and fish and lean meats and omega three complex and Olive oil(a arginine and anti inflammation diet), with some arginine and wound healing supplements and exercise is what one I would think should do, not over loading with one supplement, how can this be healthy....to say arginine is causing peyroines is like saying a healthy diet is causing peyronies?? Moderation in supplemation.... you body works in balance...
If one was going to take pentox...he might say...how about if I take OPC's instead...great for circulation...or what foods have arginine in them....what foods can cause a pde5 effective or herbs....how about my total body health, stress, mental.....
I think it is good to look into different things, but again to scream chicken little can make things confusing also, or to look for a scape goat due to the fact of frustration with this diesease....
Treating a illness also takes time....it takes sometimes years to get sick...and you get well one day at a time also....The VED takes time...Angus has been a great help with me from a mental stand point with the VED, take it slow....let it happen....do it everyday....light work out....
I'm personally focusing on over all health like you Fighter....look at how many underlying health conditions are surrounded by inflammation....my main concern is a diet and life style that controls this in my system....from dental care to heart health and good circulation..... I urge everyone to look into a complex omega three supplement, plus Olive oil and diet rich in nuts and fruits and vegtables and lots of exercise....they aren't going to come up with a pill to cure your peyronies...you have to shut down your inflammation in your body, increase your circulation and remold your plaque....Urologist are tying heart health and penis health together......
I do think we all have to be honest with ourselves also, if someone said, I can't change my diet, I'm going to eat fast foods(high for inflammation) and drink and smoke and not exercise...I'm always stress and can't control it....well then you have issues, maybe taking the pentox/arginine/viagra will control your issues and help keep the inflammation at bay.... maybe you can just say, I will eat fried food only three times a week, and cut out half of the sugar and white flour, these are all contributors of inflammation, high glycemic diets....
Just like over taking arginine or over working the VED you can also over exercise and go over board with diet....it is about moderation and balance.... find your balance like Fighter has.... and if it isn't broke, don't fix it:)...
Rico
Tim,
You know, I have to say, I am getting a little bit confused with this discussion at this point. And it all seems to center around the term 'active phase'. The classical definition of Peyronies seems to be 1) "Active Phase" (= Now being the best opportunity for treatment, and 2) "Chronic or stable phase" ( = Get used to having it for the rest of your life). In reality, my experience is that Peyronies tends to move in and out of "Active Phases". It acts like a chameleon in a sense, at times just when it seems to have stabilized, it can suddenly become active and nasty.
Having said that, I also have some questions about your speculation that TGF-beta is an issue only in the active phase. According to what has been posted here by you and others, 1) Pentox acts against Peyronies by blocking or inhibiting TGF-beta, and 2) Pentox has been shown to be effective even the case of calcifications (hardly a symptom of the "active phase"), which leads me to believe that TGF-beta may be a factor in the "stable phase" as well, if you follow the logic. Let me know if I am overlooking something here.
So my next point is that I feel that TGF-beta/Arginase issues are rather important in potentially getting a handle on this disease. In other words, you really were the one who has been pushing around this TGF-beta issue and I think you have been really on to something here even though it was only recently that you made the Arginine connection. Since the body naturally receives and metabolizes Arginine from food, TGF-beta/Arginase is an issue whether or not one is taking an Arginine supplement, although taking an Arginine supplement might arguably aggravate the problem, even without Arginine supplements, the problem is still there, and very likely, it makes no difference whether the disease is in the "active" or "stable" phase.
So at this point in my own situation, I have gotten my doc to change my BP med to a med that is a known TGF-b inhibitor, I am cramming down sunflower seeds, and I am planning to take an Arginine supp with L-Norvaline. I am also taking some other things which I suspect may have some TGF-b or Arginase connection. One would be cocoa which contains lots of theophyline. Cocoa is known to be a natural tonic to endothelial tissue, as yet the effect is not completely known. It is known to be a broad spectrum PDE blocker but that alone does not account for its effectiveness. I really wonder if there is not some TGF-b/Arginase connection. So I am taking cocoa as well. Also a host of anti-inflammatory stuff since I suspect that low level chronic inflammation also plays a role in TGF-b/Arginase. It may well be that for anyone with a severe problem, the answer is Pentox or Pentox like drugs, however it would be interesting to know what could be achieved with a Pentox/Norvaline type combination, in other words attacking both points in the chain simultaneously, along with knocking away at inflammation.
Many Arginine supps contain L-Lysine (which just happens to be a known mild broad spectrum Arginase inhibitor), and L-Ornathine (which is now thought to have a role in "down-regulating" Arginase by causing an oversupply of Ornathine in the body. So perhaps the bodybuilding industry has been on to this problem for a long time without really knowing the details.
- George
Hey all I've been away for a while, but been lurking. This is probably a stupid thing to do but...
I had some extra cash to throw away, so I ordered some pyrotabs, I've had Peyronies Disease for so long that I thought why not. I mean what can it hurt. I've gone through damn near everything else, and then some... LOL... They haven't arrived yet, I'll let all know it something happens.
I read about the VIP massage, sounds like fun. I was told years ago to massage Vit E on it.. will I did, the only problem with that is it felt way too GOOD!!!
George,
I agree completely with what you are saying about the role of TGF in "stable" disease - if TGF were not active during 'stable" disease, then why might pentox help someone with stable disease??
I think for me it boils down to trying very hard to understand why I am getting worse so much more dramatically than I ever did in the past. I am not at all convinced it is the arginine, but I am trying to simplify a bit right now to see what happens to ME right now - again this is not "data, it is just me.
Tim
Tim,
You are desperate man looking for answers like myself, but my question is if the L arginine could possibly make ones peyronies worse, why is Dr. Levine recomending it with the viagra, pentox protocol? Can this protocol be effective without l arginine?
"Recall that there may be a selection bias here, though, against those in whom it (or anything) has worked."
Tim, that is the same argument PDLabs used when they said all the people that used Topical verapamil with success moved on.... the only problem was that the majority of the people I talked to had been on the forum before they started Topical verapamil, I know myself, zigwyth, J, and Fighter just to name a few, I know its easy to jump to conclusions here without true "data," but we may never get that, only anecdotes. They could be right as well.
A lot of the guys that had no results from the injections were on the BTC long before they got the injections. I think right now common sense is telling me the risks of injections outweigh the possible benefits, it would be one thing if our poll showed that many people got the injections and stayed the same, but with a handfull of people getting worse after injections this is the part that concerns me the most. I think ok what will happen if a doctor takes a needle and pierces into the penis and accidently goes through my very thin plaque and into the corpus cavernosa? Will it bleed inside? Will more scar tissue form? I'm just not ready for the injections, to me it seems like the pentox and VED are much more safer and probably won't make things worse, even if they don't help, so I go for them over the injections. Are you considering the injections?
On another note, it might be good for hawk to add his two sense here, I remember him telling me how injections gave him peyronies? I can't remember exactly but it was a negative effect if I remember correctly and just from ED injection treatment recomended by Dr. Mulhall...
I understand Tim's point, especially since he made it a point to say there may be a selection bias. He is right, there may be one, but I have considered this at length and I do not believe there is one. We have no accounts of people who were active posters dropping into inactivity all of a sudden on any forum. The cases we have of active people going inactive is that they begin to taper off and post less frequently. They never mention that their condition was significantly improved. In fact they often state their reason for become less active on the forum. So while there could be a selection bias, meaning people that got better are not here to take the survey, there is no evidence in parting statements that supports that possibility. In fact the evididence suggests the opposite. It is highly unlikely that only those that don't post get better and leave with out a word. Improvement would likely be consistant. Any improvement among the silent group should be representative of improvement in the outspoken group.
I know if Tim, Rico, ComeBackid, Liam, or the many others posting here improved, whether spontaneously or in conjunction with a treatment, we would hear about it.
The issue is whether those who got better with a stab in the dark (so to speak) like VI, would ever come here at all. I would argue that a subset of patients that got better would be less inclined to keep searching for help online. That could really weed out a lot of people - and when we are talking about 7-9 people taking a survey (or it may be more now), our "data" is quite suspect.
Not to say I think it isn't correct, however...
Tim
Another point I've considered in regards to verapamil injections has been could the needle itself be the cause of improvment for those who do see it from verapamil injections? I'm not sure what the data is on the Lariche technique from europe but from what I remember reading it seemed to show good results, even better ones that verapamil injections. So just the needle itself could be helping break up the plaque, although I believe the needle is of a different kind. Of course one could always question the integrity of those studies just like PDLab's study and Physion's study... Here is the data straight out of our own Peyronies Disease Resource Library...
"Materials and methods: Ten patients with a mean age of 58 years (range 32-82 years) were operated for Peyronie's disease between January 2002 and January 2004. They all presented with painless penile curvature on erection, but severe discomfort or impossibility of sexual intercourse. The patients were reviewed at 1 and 3 months. The results were assessed in terms of the degree of penile straightening and resumption of sexual activity."
"Results: Three patients obtained complete cure. Two patients gained sufficient penile straightening to allow sexual intercourse and recovery was insufficient to allow sexual intercourse for 3 patients, but the result was improved after a second or even a third attempt. The last two patients were classified as treatment failures and were treated by penile prosthesis in one case and by the Nesbit technique in the other case. The results observed at 1 month persisted at 3 months."
So by sticking the needle into the plaque, 3 people were totally cured, 2 got straighter, and 3 didn't get better, but improved after a second and third attempt, while 2 were failures.
What is a failure, no response, or the procedure made them worse?!
If this data is true and ethical it seems like this procedure does more good than harm, especially if the 2 failures didn't get any worse and stayed the same, rather than they got worse cause of the procedure.
Why isn't the top urologist in peyronies Dr. Mulhall(yes i know this is debatable) interested in this procedure or learning it?
ComeBackid,
Please think through the physiology here. Again, a protocol that includes Pentox is going to reduce TGF and hence reduce argenase levels. THAT is why he prescribes them all together. In the presence of Pentox, arginine should help, because it (the pentox) will reduce TGF levels. If TGF levels are low already (because the wave of acute inflammation has happened), then maybe arginine without pentox is OK. Maybe this is all wild speculation...
Here is an article by Tom Lue about TGF levels in peyronies disease placques - in a word, he found it in abundance. He also looked for TGF beta 2 (pro-collagen formation) and TGF Beta 3 (anti-collagen formation) and found only fivve patients with TGF Beta 3 present, where as most (26/30) had TGF Beta 1 present. What we are calling "active" or "stable" disease is not commented upon, but I suspect they were clinically stable before surgery because surgeons like to wait til then to operate. This came out in 1997.
A second article I found suggests that arginine alone should help (at least it helps rats). In that study both viagra and arginine, as well as pentox all worked independently to reduce placque in rts.
This suggests to me that arginine may be irrelevant, or I may be right, and it is not helpful until the TGF is turned off. In either event, I think I need to get going with the Pentox.
Tim
http://cat.inist.fr/?aModele=afficheN&cpsidt=2826221
Transforming growth factor-Beta; (TGF-Beta1) has been implicated in many chronic fibrotic conditions such as pulmonary and hepatic fibrosis. We postulated that TGF-Beta1 may play a role in the pathogenesis of Peyronie's disease. Materials and Methods: Tissues from the tunica albuginea of 30 Peyronie's disease patients (study group) and from 6 patients without Peyronie's disease, who had undergone penile prosthesis surgery for organic impotence (control group), were subjected to histological examination using Hart and trichrome stains and Western blotting for the detection of TGF-Beta1 protein expression. Results: The results of these experiments demonstrate that all tissue from Peyronie's disease patients showed a variety of histological changes of the tunica, ranging from chronic inflammatory cellular infiltration to complete calcification and ossification of the tissues. The most prominent changes observed in the majority of patients were focal or diffused elastosis, fenestration and disorganization of the collagen bundles. TGF-Beta1 protein expression was detected in 26 patients (86%), while only 7 (23%) and 5 (17%) patients showed TGF-Beta2 and TGF-Beta3 protein expression, respectively. One patient in the control group showed fibrosis of the tunica albuginea and protein expression of TGF-Beta1 and TGF-Beta2. This patient had undergone surgery for the revision of his prosthesis twice. Five patients from the control group showed normal histological patterns of the tunica albuginea and no protein expression for TGF-Beta1, TGF-Beta2 and TGF-Beta3. Conclusions: TGF-Betal protein expression is significantly associated with Peyronie's disease, which may provide a new insight and the potential for the prevention and treatment of this disease.
Second article
http://cat.inist.fr/?aModele=afficheN&cpsidt=15541687
Inducible nitric oxide synthase (iNOS) is expressed in both the fibrotic plaque of Peyronie's disease (Peyronies Disease) in the human, and in the Peyronies Disease-like plaque elicited by injection of TGF-Beta1 into the penile tunica albuginea (TA) of the rat. Long-term inhibition of iNOS activity, presumably by blocking nitric oxide (NO)- and cGMP-mediated effects triggered by iNOS expression, exacerbates tissue fibrosis through an increase in: (a) collagen synthesis, (b) levels of reactive oxygen species (ROS), and (c) the differentiation of fibroblasts into myofibroblasts. We have now investigated whether: (a) phosphodiesterase (PDE) isoforms, that regulate the interplay of cGMP and cAMP pathways, are expressed in both the human and rat TA; and (b) L-arginine, that stimulates NOS activity and hence NO synthesis, and PDE inhibitors, that increase the levels of cGMP and/or cAMP, can inhibit collagen synthesis and induce fibroblast/myofibroblast apoptosis, thus acting as antifibrotic agents. We have found by immunohistochemistry, RT/ PCR, and Western blot that PDE5A-3 and PDE4A, B, and D variants are indeed expressed in human and rat normal TA and Peyronies Disease plaque tissue, as well as in their respective fibroblast cultures. As expected, in the Peyronies Disease fibroblast cultures, pentoxifylline (non-specific cAMP-PDE inhibitor) increased cAMP levels without affecting cGMP levels, whereas sildenafil (PDE5A inhibitor) raised cGMP levels. Both agents and L-arginine reduced the expression of collagen I (but not collagen III) and the myofibroblast marker, alpha-smooth muscle actin, as determined by immunocytochemistry and quantitative image analysis. These effects were mimicked by incubation with 8-Br-cGMP, which in addition increased apoptosis, as measured by TUNEL. When L-arginine (2.25g/kg/day), pentoxifylline (10mg/kg/day), or sildenafil (10mg/kg/day) was given individually in the drinking water for 45 days to rats with a Peyronies Disease-like plaque induced by TGF-Beta1, each treatment resulted in a 80-95% reduction in both plaque size and in the collagen/fibroblast ratio, as determined by Masson trichrome staining. Both sildenafil and pentoxiphylline stimulated fibroblast apoptosis within the TA. Our results support the hypothesis that the increase in NO and/or cGMP/cAMP levels by long-term administration of nitrergic agents or inhibitors of PDE, may be effective in reversing the fibrosis of Peyronies Disease, and more speculatively, other fibrotic conditions.
Please guys, remember when we talk about Arginine, we are not just talking about the bad things that could happen. Arginine is after all a powerful substrate for nitric oxide and with Pentox knocking out the TGF-beta -> Arginase pathway, Arginine is left with a wide open shot at generating healthful doses of nitric oxide. And thats the kind of synergy we want to encourage. Pentox to knock out the TGF-beta and its nasty children, Viagra to knock out PDE-5 and its nitric oxide inhibiting effects, and THEN we want to stuff down the Arginine and fire up the nitric oxide furnace to melt away the lesions. Thats the strategy that I see happening here.
Quote from: George999 on October 05, 2006, 02:09:36 PM
Many Arginine supps contain L-Lysine (which just happens to be a known mild broad spectrum Arginase inhibitor), and L-Ornathine (which is now thought to have a role in "down-regulating" Arginase by causing an oversupply of Ornathine in the body. So perhaps the bodybuilding industry has been on to this problem for a long time without really knowing the details.
on the link http://www.arginineresearch.com/L-Arginine.htm near the bottom, we find the following quote
QuoteFormulas containing free forms of both L-arginine and Lysine are to be avoided.
Can you explain this "free form" mystery to me? and in your opinion, is this 2nd quote from the website saying not to take arginine and lysine together or simply to avoid free forms?
Lysine and Vitamin C are known components in the production of collagen.
Tim and George,
Thanks for the laymans explanation I got the L Arginine and Pentox part, now onto the viagra... :D
How important is the viagra in the combo to knock out that PDE-5 , I only ask this cause I can't afford viagra, so is there anything I can use to replace it? I thought red korean ginseng or Goat Weed are PDE-5 Inhibitors? I thought about buying viagra from oversees but safety is a concern and so I'd like to mirror this protocol as much as possible with a PDE-5 Inhibitor. Good explanation though I got it now. I'm taking a Centrum vitamin Daily, I hope this does not throw off or interfere with the effects on this protocol, it has a lot of vitamin C in it.
ComeBackid
I know it can be hard to keep straight (a term I try to avoid on this forum!). HGW is the "Viagra-like" medicine. Ginseng helps prevent "detumesence" through a mechanism like that of trazadone.
Since I have posted this information at least 4 times, it might help to cut and paste it into a personal file called "How they all work" or something to refer to when one forgets.
Tim
ComeBackid,
In several of my previous posts I have referred to Korean Red Ginseng as a "PDE-5 inhibitor". I was incorrect and appologize for any confusion that may have caused. Tim is correct. Korean Red Ginseng IS NOT a PDE-5 inhibitor. The study on KRG states that "The administration of Korean red ginseng has shown to have superior effects compared to the placebo or trazodone." Thus the very study that defines the role of KRG compares it to trazadone and NOT Viagra. On the other hand, Horny Goat Weed contains Icariin. From what I have read, about ten 500mg capsules of Horny Goat Weed with the standard 10% (50mg) of Icariin) equate to one low potency dose of Viagra in terms of PDE-5 inhibiting effectiveness. If I were you, I would pay the money to get a consultation from a trained herbal specialist in terms of how to take HGW for maximum effectiveness and safety. That would be my direct advice if you are considering it for a drop in replacement for Viagra.
- George
I think at this point I am a bit confused myself about wogonin.
1) There are studies indicating that wogonin is helpful for peyronies.
2) Wogonin has been shown to be an iNOS inhibitor, iNOS is associated with inflammation, so this should be a good thing.
3) BUT, iNOS has actually been shown to be an effective agent in alleviating peyronies. (According to a study just referenced by Tim a few posts ago.)
So at this point, I am quiting the Skullcap for a while until someone gets this further sorted out. Instead I am concentrating on the HGW, Vitamin C, Sunflower Seed approach, going mainly after PDE-5, inflammation, and Arginase, along with some help from Cozaar on the TGF-b front. I have also backed off a bit on the aloe vera dropping back to one per day.
- George
- George
There have been a trickle of posts expressing concern over anything that supports collagen production in the body. Personally, I want to again state that the reason I am using collagen building supplements is that I veiw collagen metabolism as a NORMAL function of the body. The problem to me is the TGF-beta, inflammation, and PDE-5 channels, not the collagen production itself. But thats just my opinion and experience. For some weeks, I have been taking large amounts of C and Lysine and have noted no worsening of my Peyronies. So my advice is, if the very idea of feeding collagen bothers you, by all means avoid anything that feeds collagen production. Otherwise, I see no reason to experiment and see what works and what doesn't. But my position remains, it is NOT collagen that is the problem, it is the imballance that causes collagen to be misused that is the problem, and that is what I want to target.
- George
I think the roles of the "NOS's" (inducible Nitric Oxide Synthase (iNOS), and edogenous Nitric Oxide Synthase (eNOS)) are often working at opposite ends of the inflammatory spectrum. Thus, it can be quite confusing. For instance, naturally exhaled NO is a marker of lung inflammation in severe asthma, and yet we sometimes give inhaled NO to make asthma better!
Understanding the role of NO is very complicated. That it is an important molecule is underscored by the awarding of the Nobel for it's discovery and elucidation of action. It is a very simple molecule (a Nitrogen atom bound to an Oxygen molecule) but it plays important roles in nearly ALL biological systems, including wound repair.
It is actually a GAS that is very shortlived and penetrates through cell membranes to affect nearby cellular processes. Thus, the location of the production of NO has an effect in what it does to us.
Wogonin may be of value in suppressing iNOS and thus allowing eNOS to work better. However,m it is not at all known - this is my speculation. I know of no clinical data - only cell culture studies of wogonin. I might take wogonin or Chinese Baikal skullcap if I had access to it, but for now I am passing on it.
Tim
George,
Yes I was getting confused on the Red Korean Ginseng being a PDE 5 INhibitor, thanks for the clarification. Someone down the chain as well stated that trazodone is a PDE 5 Inhibitor, I don't think it was you but someone else. After looking this up this appears to be incorrect as well.
Quote from: Hawk on October 06, 2006, 02:42:54 PM
ComeBackid,
I don't think anyone did state that ginseng was a PDE5 inhibitor. I think you have mixed this up several times since Tim first brought it up.
Quote from: George999 on October 06, 2006, 12:05:20 PM
ComeBackid,
In several of my previous posts I have referred to Korean Red Ginseng as a "PDE-5 inhibitor". I was incorrect and appologize for any confusion that may have caused.
Hawk,
There was different information going around and it was getting confusing, everything is clear now.
ComeBackid
Has anybody read "The Naturopathic Approaches to Peyronie's Disease" by William Brodi the Skeptical Nutritionist and tried the suggestions?
Redfish,
I don't mean to be rude, but may I ask what exactly the purpose of your post is? There are scores of "solutions" for Peyronies on the web and elsewhere and most of them are frauds. We are all here because we have Peyronies and we are interested in sharing information and searching together for a solution. Most of us, myself at least, are not interested in solicitations to buy books or any other form of someone's unproven (meaning legitimate research) theories about Peyronies Disease. If you have Peyronies disease and have found help from this author and his book, please share. On the other hand if you have Peyronies and are wondering whether this book would be useful, I for one would suggest that any really useful information is readily available on this forum, on on the internet itself. Most people trying to sell medical 'information' (alternative therapies and such) are con artists. On the other hand, if you don't have Peyronies Disease and are here doing soft spamming for the book, you are in the wrong place.
Hmmm...
George, I didn't see that post as spam - could be I guess. I recall the book is mentioned on the PDI website - yup, the very one where you got your vitamin E from.
I tend to not want to pay money to get synthesized generalities. I would rather get information. I cannot vouch for the quality of this book, it seemed pretty hokey to me (just my own two cents worth).
Tim
I am not trying to sell anything just trying to find an answer like everybody else. I bought and downloaded the book last night and I have read about halfway through. Everything is supported with research. I was just interested if anybody had tried any of the suggestions. His explanations are intelligent and well supported. I have already ordered some of the suggested products. I will report back with any progress.
Redfish,
Thanks so much for the explanation. It makes things a lot clearer. And a warm welcome to this forum from myself and I'm sure everyone else here. I myself, as Tim noted, buy from PDI and have found that they have a lot of good info on their site as well as good pricing on their products. But I really get suspicious about people selling information products because so many of them are either useless or simply repackaging of whats already available for free. If repackaged information is sold at a reasonable price, I have no problem with that at all, but a lot of stuff out there is a rip off. I was unaware when you posted that you had gotten your book from PDI. Although I have some philosophical differences with them, I generally consider them to be pretty reputable and straight up as the saying goes. So I encourage you to look over these forum threads and make use of the wealth of information here on this site and by all means share the good stuff you are learning from your book. If you find it helpful and worth the money, let us know and I'm sure others lurking around here will be interesting in obtaining it.
Sincerely,
George
Redfish,
Welcome to the forum and a salute for being an active poster and contributor by asking questions and making comments.
By way of a brief introduction I am a skeptic by nature (or nurture). I assume everything in life is not true until the weight of evidence convinces me otherwise. http://www.peyroniessociety.org/evaluating.htm
I am interested in the authors credentials. Thought credentials are not everything, they make a good starting reference point.
In addition to a skeptic on the science, I have a philosophical issue I wrestle with. I certainly have not formed a solid opinion but my current thoughts are; that unless he has conducted trials and first hand research, or at least invested money and time getting a specialized degree that enabled him to form opinions and conclusions that other intelligent people cannot form, he is out of line selling the information. That would be much like us charging for the information on our forum. If we borrow research from others, evaluate the conflicting evidence, form conclusions, survey our member's first hand results, and stumble across a successful trend, we invite the world to come and get whatever use they can from it. In fact, we actually spend our own time and money to provide them with the opportunity. It is just who we are and what we do.
I could be wrong, but I am willing to bet real money that there is information on this forum, even on this thread, that surpasses information found in that book. It is provided by men of experience, men of intelligence, educated men. if you know anyone that is interested, tell them they can read it, comment on it, and ask questions for free.
Hawk,
I respectfully disagree - sort of. I share a certain disdain for selling a synthesis of information easily found elsewhere for free. However, if a person has an ability to make something easy to understand, and thus more accessible to others, then that can have great value. That is why we have teachers in schools instead of simply piling up the original reseaerch papers and asking the students to read it all up and figure it out.
What I am much more concerned about is someone who might make unsubstantiated claims and present them as facts. I am also leery of documents which cannot be reviewed somehow before buying them. A book in a bookstore can be extensively browsed befor purchase. When I have to buy something without the ability to first somehow judge it's quality, my first assumption is that it is going to be sub-par. That may not be "fair", but it has served me well over the years.
PS - Last night I was surfing the tv channels and saw an infommercial for a sexual enhancer that seemed from the testimonials to solve every single problem that a man could face, if you know what I mean... except, I didn't know what they meant. They were so tangential in their wording that it was impossible to tell WHAT exact problems had been fixed... but one could infer that premature ejaculation, flagging erectile function, and one's level of desire itself, could all be enhanced. Funny - i watched for over ten minutes waiting for even a glimmer of what the ingredients were... Nope - never came.
This is how I look at online only books that are "not available in a bookstore!" Ithink there is usualy a reson the book was not published, just like I think there is a reason the guy on tv last night did not want to tell us what they were selling.
Tim
Tim,
You must be talking about a product called Extenz? If it is, the company name is Sizegenetics I believe. If one were to check out their site, you 'd find it claims their products cure every male issue there is. Some of them are mentioned but vague terms are all over the site. Of course you have to buy a different product for each concern, including peyronie's. One thing never once mentioned on the whole site is what the "herbal" ingredients are. I was specifically searching for a content lest. Got bored one night and searched their site after seeing that silly infomercial. ::) swimfly
Swimfly,
I just not too long ago read of a certain "nutraceutical" company out here on the west coast that was trying to sell one of those expensive heavily marketed specialized miracle cure formulations. They got caught by the FDA in a very embarrassing situation. It turns out that they weren't able to sell all of their stock on hand, so at the expiration date, they simply invented a new miracle cure for a completely different affliction, and, you guessed it, they simply ripped the labels off their old stock and glued the new labels on and had a new marketing campaign going in no time. Pretty cool, except, of course that someone turned them in. Oh well, as they say, buyer beware!
Tim,
While in general I agree with you, in all the time I have dealt with PDI, I have found them to be honest and straightforward. The guy who runs PDI is a chiropractor who himself suffers from Peyronies. He, as is the situation with many chiropractors, happens to be deeply 'into' alternative medicine, a substantial portion of which, I personally dismiss as quackery. But this guy, Dr. Theodore Herazy, has the kind of training and personal experience to provide a ton of useful information, I am very confident of that. But there is a fine line between what I believe to be legitimate complementary and alternative medicine and the stuff which borders on quackery and not all of us agree on those issues. But I can also tell you that PDI offers a wide range of supplement and other products aimed at Peyronies sufferers AND I have looked at pricing across the web, and I can also tell you that their prices are extremely reasonable for the products they sell. So while their is stuff they sell that I would avoid like the plague, homeopathic stuff and such, that is just me. I just don't swallow that approach or others as well. But some people do, and if they go to someone like Dr. Herazy, at least he is not going to shear them like sheep in terms of pricing. So while I don't completely agree with the guy, I respect him and his training, and I find his site and his store very useful. I think it speaks well of him that he was willing to link to this site with all of its wide open discussion which is our hallmark here (as in nothing is sacred around here). Additionally, I think it is good that this site has linked with them, as I have found them to be one of the few useful (and reputable) Peyronies sites on the web. So while I understand your position, and I share the same skepticism, my personal experience in dealing with PDI has been a good one, and I just wanted to share that. (Actually, I hope that Dr. Herazy himself will take the time to follow some of the discussion going on here, as I think he would benefit by it in terms of concepts and our community needs someone like him to be a link to the various product distributors out there and someone like himself could be helpful in terms of making sure stuff for us that is not generally available is made available at reasonable prices by someone who understands our needs.)
- George
Tim,
We agree more than we disagree and as I said in my post, I have not totally formulated my position on this issue. As George says about on person selling alternative methods, "he is really into alternative medicine". I may be missing something, but lots of us are "really into alternative medicine". Would it be OK (ethically not legally) for George, Rico, and I to write an Internet book and sell our opinions, based on our interpretation of studies we have read? I personally could never participate in that. If I had a PhD in nutrition, and years of experience working with urologists implementing holistic approaches to urology, then maybe.
I know I am rambling but the biggest turn off I can encounter is someone not clearly stating their credentials. I have read books by Dr. Whoever ( I have pitched them) only to research and find that first, they implied they were an MD or at least did not make it very clear that they are not. Secondly, investigation reveals they have a PhD in a totally different field. JUST BE UP FRONT. If you are not upfront with that kind of stuff who can trust you on anything? I am not talking about the book that started this discussion. I am talking generally, but I am interested in the qualifications of that author and if he clearly states his qualifications or if one is left to assume. This is the first test of integrity for anyone selling a book or products. If you don't pass that, you don't get a second look from me. If you state, I am a PhD. in psychology and when i saw the devastation of this disease in the lives of people I made it my mission to learn more. Then I may raise an eyebrow but at least I have respect and i will look closer.
A lie is to deceive others. You can do that blatantly, or with inflection in the voice, or by what you imply and fail to say. Its still a lie. Even a chronic liar tells the truth more often than they lie. They can tell you 100 things that are true, but it is always that one lie that will get you.
I started taking 1g/day arginine about weeks ago and it improved tendonitis in my thighs. However, 2 days ago my unit became slightly painful the touch when flaccid - near the glans, close to some old plaque (about 24 years old). I have never experienced any pain before, whether soft or hard. Is this a sign that Peyronies Disease is moving into the 'active phase' ? Alternatively, could it be actually moving some old plaque and thereby causing this change of sensation/minor discomfort?
At least something is happening! What worries me though is Tim's post:
QuoteSo, you did read a post by me stating that I thought arginine may make Peyronies Disease worse, when it was in an active phase. the only data I have to back it up is tangential, and my desparate attempts to figure out why my Peyronies Disease is getting worse right now.Quote
Percival
Percival,
I am unsure of my own issues - it's even harder to try to figure out someone else's! I think that pain could be a sign of things changing for the worse or the better. I guess I use new changes in shape to guide my thinking. I also notice, FWIW, that my pain is never terrible, but varies from none to a little bit, randomly.
Again, it is not science, but I am cycling off of arginine for about two weeks, and then will start it back up to see if thre are any correlations in my own processes that I can observe.
Tim
I just want to interject that in the case of Peyronies, as I have stated previously, I think it is very important to maintain control over inflammation. Thats one reason that I use things like aloe vera, fish oil, mangosteen, and hefty doses of heavy duty anti-oxidants like vitamins C and E. My concern is that if I loose control over inflammation, I will end up sustaining more damage than I already have (that happened to me once, big time, I lost a lot ground and ended up worse off than ever, and I don't want to allow it to happen again), so my strategy has been to literally attempt to build a wall against inflammation while I at the same time attempt to attack the plaque. Over the last week, by the way, I have noted some additional progress, so hopefully the attack of the sunflower seeds is helping me to gain some additional ground. I am really looking forward to getting started with the L-Norvaline. That is my next project in my war on Arginase. - George
George,
Take a look at VASOSTATtm by Cytosport..... I think this is something you might be interested in...more powerful than arginine for NO effect? I haven't used it.....might take a closer look.... looks interesting..also there is Vyotech Nitrobolic Extreme with L-Norvaline, Tropical lemonade....this seems to be getting attention with the gym rats.....good find George, I'm glad you and Tim where looking at this...I think I will give one of these complex mixes a try after my xyience runs out...
Best regards,
Rico
Rico,
I do not come up with anything when I google VASISTAT. cytosport takes me to a bodybuilding site that is extremely annoyihg because it does not seem to have a search function to search for their products!!!
Can you try this hot tip again with a proper spelling?
Tim
Tim,
Vasostat by Cytosport is the correct spelling......Not vasistat....
Rico
Members and Guest,
Vyotech and Vasostat are brands names using L-Norvaline...the claims are 60% more NO in the blood stream...bodybuilding.com and other sites or forums give there opinions on these products...
In working out there is no quick fix just like with peyronies....although you can cheat with steroids:)...but you are taking your true health in the opposite directions you should be doing, you look good but your liver and kidneys and heart ect...are taking a told on you, plus this look is short lived....
If you work out hard and take some SUPPLEMENT, once again supplement means to supplement, some feel this is a good approach along with proper diet and exercise...
I believe in what George is doing, going after the inflammation, through diet and some supplements...
When I went to my Urologist he himself had about a 36 inch chest with a 40 inch stomach, he prescribe potaba for me, I choose not to take it from what I had read on it..... he never mention diet or exercise...
I don't think myself that one will cure his peyronies with diet or exercise....I would think if the scar tissue is form it is there, but can one stop the inflammation or help control it with exercise and diet....I believe you can and I would think this would help keep your peyronies at bay...maybe help with the pain, and maybe if going into a complete lifestyle change isn't what someone can do then the pentox/arginine/Viagra protocol or injections ect...is the way for one to go, this is a personal choice for all of us....
I have read about the shotgun approach, throw everything at it....I guess my thoughts are on this is I think it is good but not in the way of shotgun with all supplements....more for me shotgun with diet, exercise, VED and a couple supplements....I really focus on my diet..I feel for long term health and well being I will get the most benefit....also if you focus on hearth health you might just get more benefits for your unit than you would think......
Peyronies can be very difficult for one to get his arms around, but if you say, I need to shut down the inflammation and focus on this with a shotgun approach and then remold the plaque through VED, it seems more attainable to me.....and you mind set has to be that this will take time, maybe one year or more.....
Rico
Vasostat is no longer being made it appears, and Vyotech is a company name, not a supplement name.
I am unsure that norvaline would last long in the blood, but am researching it more.
Tim
Tim,
One thing is certain, Norvaline is really catching on in the bodybuilding world it would seem. There are more and more products that are including it. And some of them are using some time-release type formulations along with some molecular formulations designed to help their payload better survive stomach acid. But I am finding that many of these products seem to be on back order right now. At this point I have SNS Arginine E2 Matrix on backorder from bodybuilding.com. Apparently it, like other norvaline containing products is fairly new on the market, but it does have a few interesting reviews:
http://forum.bodybuilding.com/showthread.php?t=835526
http://forum.bodybuilding.com/showthread.php?t=666404
http://forum.bodybuilding.com/showthread.php?t=665954
Of course these are bodybuilding reviews, and all I am looking for is improved blood flow using this stuff in concert with a nice workout on the treadmill a couple of times a day. So I am not quite sure how that will work out, but I am planning to give it a try.
Also Hawk and I have been discussing Lysine a bit via private message. It seems that for reasons not completely understood. Lysine + Arginine has a different effect on the body than either one taken separately. The major point being that taking Lysine at the same point in time as Arginine blunts the effect of the Arginine and results in a different unwanted effect being potentiated. Hawk initially brought this concern up in a generalized way, referencing a very good link (see below), after I suggested that Lysine should be taken along with Arginine in order to suppress Arginase. Additional information seems to suggest that it also suppresses the desired NOS stimulant effect of Arginine as well. So now I'm not so sure about taking these two together, in fact I am suspending it at this point and am taking them separately instead. Hawk is apparently looking into this further. It will be interesting to see what he finds.
- George
Guys,
Stumbled accross this while researching pentox.
http://www-dsv.cea.fr/content/cea_eng/science_vivant/part/brevets/pharma/1233.htm
Power
Forum members and guest....
I think it would be in everyone's best interest to google opc....you can add search words like opc and scar tissue, inflammation, or circulation....
Rico
Power, thanks for sharing the Pentox link. I really think the future of Pentox is huge. I don't think they have even yet really begun to touch on its medical capabilities to treat all kinds of diseases that were previously assumed to be 'untreatable'/'incurable'.
Rico, I also think the power of OPCs is being largely ignored. I found this page, posted by a plastic surgeon to be especially informative:
http://www.jamesbeckmanmd.com/scar.php
Also, this very interesting piece alledgedly from the company owning the original patent on OPCs:
http://www.proanthocyanidins.com/#dimer
Buyer beware?
It can be purchased here:
http://www.healthysource.com/main.html
- George
George,
I have found that grape seed, red wine extract, billberry, martime pine bark mixed in combination to be effective in inflammation reduction and over all circulatory benefits....I like billberry for eye health....
I don't think that opc's will remove scar tissue, but the circulation for over all health and the stopping of the inflammation to curtail the progression of the plaque is something that the OPC's might benefit the peyronies patient....
I personally know people who have taken there children off of Ritalin due to OPC's and I have had success with the stopping of inflammation in my elbow and knee....or I should say pain, which I think was cause by inflammation....
Rico
Forum members and guest...
I have been reading on Korean Ginseng....Mayo clinic studies and also sites like bodybuilding.com I just want to bring to everyones attention that they suggest cycling of and off....three weeks on and two off.....
Rico
Rico,
I was told to do a lot of walking for my BP years ago by my doctor. Wanting a better 'workout', I asked a friend who was casually into bodybuilding for suggestions. He suggested I should buy a Health Rider. So I spent quite a bit of money for one of those contraptions (which were quite popular at the time and being heavily marketed), and for me, it really turned out to be a disaster. It just made me sore and tired and the impact it induced was just more than I could take. Sure, I could work up a sweat on the thing, but I couldn't maintain it. And I felt really beat and bruised when I got off of it. So now, years later, and desparate with my BP situation, I went out and paid big bucks for a treadmill. My intention was to provide a way to get in my walking when the weather was lousy or when the only time I had for exercise was after dark. But now, after trying it out, I am finding it to be completely different than what I expected the treadmill experience to be. My expectation was that treadmills were sort of like 'walking indoors'. But after fiddling with it for a few days, I was absolutely amazed that I can work up a major sweat on that thing and maintain it for 40 minutes and, the most amazing part of all, feel completely refreshed when I dismount it. What I am finding is that the ability to finely define speed and incline is what makes treadmilling so different from walking (along with the fact that I don't have to stare at the ground all the time to watch out for what the dog walkers have left behind in my path). I am just truly delighted with it and really recommend it to those who really need more exercise, but are not really into bodybuilding. My daughter, who frequents the gym all the time at college, tells me I should have gotten an eliptical instead. (And my wife tells me that she is not going to allow me to turn our house into a gym, just in case I have any thoughts about adding an eliptical). But now my wife and other daughter are also using and enjoying the treadmill, so, as I said above, I do highly recommend it and highly recommend exercise to anyone who has Peyronies.
- George
Dear members and guest...
I was posting about OPC's, which I do take myself.... they are known to have possible anticoagulant benefits also and people on blood thinners should be aware of this and shouldn't take until they talk to there primary care giver....trental(pentox), is one of these...
My own opinion on the pentox/arginine/viagra regime would be not to take other supplements when I was on this, a multi vitamin might be the only exception...blood thinners stay away from...One can read studies that say ginseng out performs trazdone for penis circulation/blood flow.... but then you have to get a good brand of ginseng also....
It is the one thing that I feel the drugs have over the natural herbs, is more consistency in the delivery....the opc's have more of a medical grade to them and some doctors prescrive them. But the ginseng is still coming from overseas...anyway remember there is a rhyme and reason to supplement or take the drugs.....don't over lap...
Rico
Rico,
I do not necesarily think all ginseng is coming from pver seas. As a matter of fact, american ginseng is the most expensive of the 3 types and acts much like the korean ginseng. I have taked korean gensing for 6 days at a little above the recommended dose. I have read it takes several weels to have an effect. I can say that my experience after 5 days is that it cannot even begin to compare to trazodone.
Hawk,
What is the recommend dose you are taking....where you taking 1200 mg?
Maybe the red ginseng isn't the best? This is what I read, the Korean red which I believe is red after they process it by steaming the roots....
I did say that I believe the prescriptson drugs are more consistent and have quality control....I will try to find the article on ginseng vs trazdone...
What is the difference with trazdone for you? Is it blood flow? I'm interested in trazdone, I know it is use for sleeping also, do you find you get a hang over from it and do your recommend it for peyronies?
If anyone has a good supplier they recommend for ginseng, I would like to hear about it also.....
Rico
Rico,
According to GNC you need to be on these supplements for weeks before they kick in, the horny goat weed and ginseng that is.
The trazodone left me feeling drowsy the next day for a few weeks, after about a month this side effect went away. I definately noticed night time erections and what not. The question I have is if you take it for like 6 months or a long period of time and then stop, will you automatically keep getting erections in the sense you have conditioned yourself to do so. Some have said you can do this with viagra.
ComeBackid
I was doing a reality check with myself about how many substances I am, or have been, using. Then I had a little head trip, a flashback, if you will. There was Grace Slick in her prime,
"One pill makes you larger
And one pill makes you small
And the ones that mother gives you
Don't do anything at all
Go ask Alice
When she's ten feet tall"
Just my way of saying a reality check is good.
Now, back to my hookah and the chess game.
Liam
Panax Ginseng is Red Ginseng, and it is the one that has been tested heads up against trazadone. The potency of a drug is pretty meaningless. It means nothing to me that Cialis works at 20 mg and viagra works at 100 mg - that does not make one "better" than the other. Similarly, we may not be approximating the doses used in the Ginseng study with OTC meds we use here. Unfortunately, we do not have a standardized dowing or even extraction methods for some of these items, and so translating a research study into action is quite difficult.
Tim
Tim,
I know you have taken cialis, do you think this is the same as taking Viagra for peyronies....what is the effective of taking these with peyronies for quality of erection? My doctor told me it wouldn't help me with the bending effect....I'm interested in your opinion Tim on taking pentox/arginine/viarga with other supplements...I know you have said that you feel the pentox is the best program probally out there right now being offer for a oral treatment.... do you feel one should not be taking other blood thinners or supplements with this program?
If you had no pain, and the curve was stable and you were five months into this, would you take the pentox program...would you do the edma verapamil, or injections? I think we all believe in the VED and a good life style, diet exercise, we know this can only benefit ones over all health.....
Are you using trazdone, this seems like a good sleep aid...
The problem with peyronies is that it is such a huge mind job on ones esteem, just the thought of the hour glass takes the erection quality away...it is hard(no pun here:)) to figure out what is really going on sometimes....
DannyOcean I know you are using the pentox/arginine/viagra what are your thoughts on this, what is it like taking viagra everyday?
Rico
The fact is, I have read warnings on legitimate medical websites against substituting American or even NON-RED Asian Ginseng for the Red Asian Ginseng. Most of the studies have been done on the Korean Red. But from what I have read the Chinese Red is OK. The NON-RED Ginseng is not OK and the American Ginseng is definately not OK in terms of what we might be taking it for. In fact the reason I went to the trouble to spend as much time as I did on this is due to my hypertension. The Red Ginseng is the only type that has been shown to lower BP. And there are medical professionals out there that warn against NON-RED Ginseng, saying that it might even raise BP. And I agree completely with Tim, potency in terms of MG is a useless number. The big problem you run into in pharmacology is what do you do when you compare Product X with Product Y? 10mg or Product X has the same potency as 100mg as Product Y? So is Product X more potent or even the better product? What if
I also told you that 20mg of Product X would increase its effectiveness by 2X and 200mg or product Y would only increase its effectiveness by 10%. Now which is the best product? Also jumping on and off drugs or supps is not a very good way of testing their effects. Some pills take effect almost instantly, others, including some prescription drugs, take a month or more to really kick in. Thats why when they do studies they don't just give people the pills and have them come back at the end of the week for the final evaluation. So for what its worth.
- George
George,
Thanks for the update, I thought I read somewhat along those lines also.....now the red Korean or Chinese is from the process of steaming the root..right? I know that steaming in some cases can bring out more of a products potency...maybe this is the case with the root?
I do believe you are right that these supplements take sometime to kick in and one of the problems is we don't give them a chance....it is hard when you read a article and one says they are crap and another says they are good.
What is your take on the pentox/arginine/viarga?
What ginseng are you taking? How much?
Have you also read about one should cycle of the ginseng, three weeks on and two off?
What is your take on ginkgo? I keep seeing it mixed with ginseng?
Rico
I am in a big rush George, but thanks for additional or repeated info. I read and I am typing fast so if this reflect nonsense call me down on it (I would you :) )This is where I am coming from.
The link you or someone (in depth on erection physiology) indicated there are only 3 species of ginseng, American, Korean, and Chinese sometimes called Siberian. it indicated that the American and Korean are both of the genus "panax".
While mg is not an accurate indication of potency, standardization should be, provided labeling is accurate. We know the latter can not be assumed. I found a site from a link here or on my own that independently tests many brands of ginseng (and other supplements). You had to pay to find the bad ones or to see the full report but it listed a brief that showed 3 brands that were potent as labeled, free of heavy metals and pesticides within guidelines.
Your link also indicated that unlike HGW, ginseng had to be taken for "several weeks" to obtain the full erectile benefit.
Finally, I have low blood pressure if anything and ED drugs are known to lower blood pressure even more.
I would like to clarify for others that my results were stated when on ginseng only 5 days, and that I have had nerve damage due to a prostatectomy. Like others, I have my individual body chemistry. Vary any of these and maybe ginseng can compete with trazodone.
Also, I work closely with my family doctor.
Hawk,
I think the problem, or at least one of the problems here, is that there are only two types of RED Ginseng, Korean and Chinese. There is no such thing a American Red or Siberian Red. The only conclusive tests that compare Ginseng to Trazadone were done with Red Panax. Thats the bottom line. And those tests revealed that NON-RED Panax was inneffective as I recall. So if you have low BP, most likely the other forms of Ginseng will do you no harm, but they are not likely to provide the help you are expecting either, although they might be helpful with other issues. People take all kinds of ginsing for all kinds of valid reasons. As far as the toxic contaminants issue goes, I am much more comfortable with the Korean products than the Chinese products, simply because I believe that the Koreans with their democratic government probably are more careful about those things than the Chinese with their non-democratic government. I always prefer food products that come from more westernized cultures when I have a choice. But unfortunately, especially in the case of these herbal products, few vendors submit to USP oversight. Of course having said that, one has to recognize that you can die within days from tainted spinach grown and processed right here in the USA and supposedly overseen by our own FDA. My response in terms of things like Red Panax that might be of questionable quality is that I use a little of it. I tend to use a little of a lot of things consistantly rather than jumping from one thing to another. Sort of like balancing a stock portfolio. The downside of course is that in my case, while my Peyronies just keeps getting better, I have no idea which components are helping and which might be slightly poisoning my. Whenever I have doubts about a supplement, I stop taking it. On the other hand when I kind of identify things that are working (like I noticed my blood pressure rise significantly after I stopped taking CoQ10 for many months), I resume them or even increase the dosage. So all of this for me is sort of like feeling ones way around a dark room. There is research out there, but even research is sometimes conflicting. So one just has to do there best to find whats best for their own situation and their own unique body.
Wishing you the best
- George
Hawk and Rico,
Do yourselves a favor and look over http://en.wikipedia.org/wiki/Ginseng (http://en.wikipedia.org/wiki/Ginseng) . I often find wikipedia most useful when I am looking for specific facts, it is like first stop on the quest. I highly recommend it. It can prevent one from chasing down many different and obscure rabbit trails with just one quick scan.
Rico,
As far as processing 'increasing potency', its not that simple. Processing can eliminate certain effects and even create whole new effects that weren't even there in the initial product. This is where the drug industry makes their money. Right now I am taking Prince of Peace Korean Red once a day. I read what you posted regarding going on and off a supplement, many pros recommend that, I probably need to practice it more. But since I take everything at very low doses, I am probably at less risk of either toxic effects or having my body adjust and losing the benefits.
As far as Pentox/Viagra/Arginine, I am extremely impressed with this strategy, the problem is getting access to the treatment. And as far as taking drug therapy along with supplements, I would advice anybody, if you have any doubts about this TALK TO YOUR PHYSICIAN AND/OR PHARMACIST, its that simple. I make a lot of those decisions myself and I take responsibility for them and my physician knows that, but each person is different. If you need expert advice, by all means get it, talk to the professional. AND if you are taking drugs and supplements together and you get a nasty reaction, stop the supplements IMMEDIATELY until you get things figured out and contact your doctor IMMEDIATELY if you continue to get worse. You can always restart them later when you have a handle on things. But don't make the mistake many make by moving blindly forward assuming it will pass. Thats how people end up in intensive care or dead.
Ginkgo ... I have no experience with Ginkgo, but I might eventually give it a try, it has some interesting qualities. See: http://en.wikipedia.org/wiki/Ginkgo (http://en.wikipedia.org/wiki/Ginkgo) for the skinny.
- George
Rico,
Can you list the things that the panax ginseng includes, when I was in GNC I think this is what they were trying to sell me, the guy said that one works best for increasing libido.
thanks,
ComeBackid
I have been unable to differentiate between Red Korean and Red Chinese Ginseng, since bith are called Panax ginseng in th e literature, suggesting it is the same root. I have tried three different brands, two that came in small liquid bottles, and one that is powdered. I got an iimmediate improvement in Am erections, but the difference has seemed to fade a bit.
I am trying cycling off for a bit. I am also restarting my program of supplements - to see if I can find a reason to trust or distrust my L-arginine!
For Rico's question - first off, none of us are in anyone elses shoes, so it is hard to say what one "should do". I use a few principles to guide my behavior and choices.
First, do no harm. Do not pump to super high pressures, for instance, and damage your dick. Do not take 200 mg of viagra a day because that must be better than 25 a day. Do not triple the dose of Trazadone. Do no harm is the first and most important principle.
Second, I believe in doing what is generally healthy. That includes anti-oxidant therap, exercise, prayer and meditation, journaling, reading and relaxing. Things that help me will.. help me.. get it?
Third, I like to start cheap if at all possible. Affordable is good.
Fourth, I like to add things one at a time to see if I can tell if it is helping. I like to give it a week - not to see if it helps, but really to see if there are side effects I want to avoid.
Fifth, I read carefully and have moved fast to the "best" therapy - even though it has failed me so far. Thus I have tried, say, iontophoretic verapamil and carnitine. Didn't hurt me, and didn't help that much either.
Sixth, I have tried to keep an open mind. I have used the VEd for many months, and am now trying a modified protocol. I also try to understand WHY something might work to decide if it is for me. Thus, I like the idea of the VED, but I think that for denting or hourglassing, it makes more sense to get to the larger tube faster. I may be wrong, though.
As for now, I plan to get on Pentox and (back) on arginine. I will negotiate and hopefully win on the viagra.
I am not sure if cialis works as well as viagra - it is more PDE5 specific, I think and so may not work as well - but I THINK that PDE5 is the one I WANT to get to be there. So maybe Cialis is better than viagra - for me. It is for ED, since I get almost no side effects from it.
Hey Guys,
In need of some advice.
Been on the pentox/arginine/viagra routine for the past 7-10 days. I was wondering. Should I stop to do a body cleanse before i continue. I am thinking along the lines of giving my body a clean slate, that way giving the regimen the best chance to so what it claims to do.
Any thoughts on this would be helpful.
Kind Regards,
Power
Tim,
Like you, Everything I have read says there are only 3 types on ginseng. Two panx (Korean and American), both of these are in the same family but of a different subtypes. And Chinese that is also often called Siberian which is of a totally different genus (non panx). In fact the non-panx is not a true ginseng. As you know, these have to do with the botanical classification and have nothing to do with where they are actually grown or processed. Korean ginseng (Panax ginseng) can be grown in China or vice versa. I have read some seemingly scholarly briefs of these with no new information. I have yet to read the wikipedia reference that George pointed me to. If it has new information I will seek to back it up with other sources since I very seldom rely on wikipedia as a primary source.
After reading wikipedia, it appears "red" refers only to the processing method but it is still "Panax ginseng" (Korean) as opposed to the non-panax Chinese/Siberian. American is "panax quinquefolius"
If it is "Panax ginseng" it is Korean by common name. It could be grown in Korea, China, or elsewhere since it is usually cultivated. Ginsenoside is the active component.
Red means the "Panax ginseng" was heat processed with the sun or by steam.
Power,
You don't have to stop taking the pentox to do a cleanse...I don't know what your diet is like, but you can do a fruit cleanse or a three day water juice cleanse....I sometimes do a small cleanse, don't eating anything that has a face or came from something with a face, everything else goes....lots of fruit and veggies and water...clean you out and gives you lots of energy, I would see why you would have to stop the pentox/arginine/viarga with this though....
How long have you had peyronies and what are your symptoms and did you suggest this to your doctor or was it his idea, the pentox ect...
Another three day cleanse I like is you take three gallons of distilled water, mix 12 organic lemons, just the juice and 12oz. of organic maple syrup, all natural top grade A grade....make three gallons, 12 lemons and 12oz. of maple syrup in each gallon, drink just this for three days....you will get all the minerals and vitamins you need from the maple syrup and the lemon juice will cleanse your system with the water.....you will keep energy from the syrup also....you will drop five pounds also....great cleanse....the day before just eat fruit, this will flush out your colon also...
Rico
I found the previous discussion on arginase inhibitors interesting. It was mentioned at that time that Sunflower seeds were a natural arginase inhibitor, but I have had no luck finding any studies or evidence on-line to support this fact. Where can I find more (actually, any) info on the arginase inhibiting action of sunflower seeds?
Thanks
myrddin,
Put sunflower seeds as arginase in yahoo search and you will get many articles on it....
Rico
Quote from: Rico on October 11, 2006, 11:29:26 AM
Put sunflower seeds as arginase in yahoo search and you will get many articles on it....
The search results still don't seem to apply to the topic I'm looking for, namely, Do sunflower seeds, when eaten, inhibit the activity of the arginase enzyme?
I haven't discovered any source that states anything like this. I don't doubt this conclusion (I'm sure it wasn't pulled out of thin air), I just haven't found any support for this myself (yet).
Dear forum members and guest:
Pentox/Arginine/Viagra have been stated as maybe the most promising oral combination of drugs and supplement combo that one can be taking..... it seems that on this forum there is only a couple of people taking this??????? And I know of only one person DannyOcean that his doctor prescribe it on here.... is that because he has the cool name:)... serious... what gives with this.... how about you Power...you seem like a sharp guy, did you come up with this or did your doctor?
Rico
Myrddin,
This one is a bit tricky to find. The problem is, it is not fully documented on the net, but there are references. For example, if you do a search specifically on pubmed for "sunflower arginase", you will come up with this:
Quote1: Torrigiani P, Serafini-Fracassini D, Bagni N. Related Articles, Links
Free in PMC Polyamine Biosynthesis and Effect of Dicyclohexylamine during the Cell Cycle of Helianthus tuberosus Tuber.
Plant Physiol. 1987 May;84(1):148-152.
PMID: 16665389 [PubMed - as supplied by publisher]
2: Muszynska G, Reifer I. Related Articles, Links
No abstract The arginase inhibitor from sunflower seeds: purification and inhibitory properties.
Acta Biochim Pol. 1970;17(4):247-52. No abstract available.
PMID: 5495357 [PubMed - indexed for MEDLINE]
3: Reifer I, Augustyniak H. Related Articles, Links
No abstract Preliminary identification of the arginase inhibitor from sunflower seeds.
Bull Acad Pol Sci Biol. 1968;16(3):139-44. No abstract available.
PMID: 5671113 [PubMed - indexed for MEDLINE]
4: MORAWSKA MUSZYNSKA G, REIFER I. Related Articles, Links
No abstract PREPARATION AND PROPERTIES OF THE ARGINASE INHIBITOR FROM SUNFLOWER SEEDS.
Acta Biochim Pol. 1965;12:187-94. No abstract available.
PMID: 14302419 [PubMed - OLDMEDLINE for Pre1966]
5: REIFER I, MORAWSKA G. Related Articles, Links
No abstract AN ARGINASE INHIBITOR FROM SUNFLOWER SEEDS (HELIANTHUS ANNUUS).
Acta Biochim Pol. 1963;10:413-7. No abstract available.
PMID: 14067411 [PubMed - OLDMEDLINE for Pre1966]
So there are studies, they are just old ones that were never archived.
- George
Hawk,
Look again at that wikipedia entry, specifically::
QuotePanax ginseng Chinese/Korean ginseng (root)
and:
QuoteEleutherococcus senticosus (Siberian ginseng)
And these points are not in dispute in the discussion.
By those points and from the studies, of which there are eight pages worth if you search pubmed for "red ginseng", I am left to conclude that the ginseng I am looking for is
either Chinese Red Ginseng or Korean Red Ginseng which are actually the same plant which happens to be grown in both China and Korea. In Korea the nuture and marketing of Ginseng and especially Red Ginseng is overseen by the Korean government. I would expect the same to be true of the Chinese Ginseng industry. So the key here is that Korean Red Ginseng is grown and processed in Korea and Chinese Red Ginseng is grown and processed in China. Other than that distinction they are the same product. As for Chinese Red Ginseng being marketed as Korean Red Ginseng, I think that would be a misrepresentation on the face of it, and I wouldn't buy from a company that was doing business like that. Prince of Peace http://www.popus.com (http://www.popus.com) actually sells both forms, the Chinese grown product and the Korean grown product. The other major vendor of Korean Red Ginseng is GINKO International http://www.ginsengcompany.com/ (http://www.ginsengcompany.com/). They also sell both the Chinese grown product and the Korean grown product. Chinese Ginseng is not or at least should not be called Siberian Ginseng as they are two completely different plants. I believe that both of the above mentioned Ginseng marketers sell Siberian Ginseng AS Siberian Ginseng and also American Ginseng as well and claim different medicinal effects for each of these products.
- George
Tim,
I wish you the very best on your Pentox strategy. If my Peyronies was severe enough to be causing me a problem (or if it ever heads in that direction), Pentox would be the drug I would want to be on. The Pentox/Viagra/Arginine combo seems to be just about the most promising therapy out there at this point. So I wish you the best on the Viagra front, and also that you finally see some real progress where it counts.
- George
In regards to taking Vitamin E along with Pentox, I found the study referenced previously by Power http://www-dsv.cea.fr/content/cea_eng/science_vivant/part/brevets/pharma/1233.htm (http://www-dsv.cea.fr/content/cea_eng/science_vivant/part/brevets/pharma/1233.htm) to be interesting. It specifically mentions Vitamin E being used with Pentox as a therapeutic combination. So the fact that both are 'blood thinners' might not preclude both of them being used together after all (**BUT CHECK WITH YOUR DOCTOR FIRST**).
- George
George, to me the bottom line is:
The type - Clearly that is "Panax ginseng" regardless of the common name
Standardized for "ginsenoside" the active ingredient
Contaminant free - I think that can not be assumed by common name, or by either the claimed or the actual place of origin.
I would much prefer independent testing such as http://www.consumerlab.com/results/ginseng.asp because labeling on even such things as potency, standardization, impurities, are all very suspect if not worthless. This is true of many supplements.
Finally the process of steam or sun heat (both called "Red")
I am interested in any studies where the "red" was used in a test with standard "Panax ginseng" as a control. Without that, I think claims of superior impact is suspect.
I am taking Arginine Alpha-Ketogluterate. A web search throws this up as being used by body-builders, but apparently the basis is that it is a more effective producer of NO than L-Arginine.
Does anyone know anything about this ?
Flexor
Flexor,
I suggest you take a look at this thread at bodybuilding.com:
http://forum.bodybuilding.com/showthread.php?t=830139 (http://forum.bodybuilding.com/showthread.php?t=830139)
The bottom line is that most of the Arginine variants play a role in nitric oxide production, but there are subtle differences in the way they work, that is why most bodybuilding Arginine supplements contain multiple types of Arginine. I was confused by all of this at first, but finally came to the realization that it is probably to complex for me to try to figure out. The major bodybuilding supplement companies continually spend lots of money trying to get there formulas just right, and they create specialized amino products that they aim at specific goals. At this point I have just kind of thrown in the towel on the do it yourself approach to Arginine and instead have a custom formulation on order. If you look over the bodybuilding.com forum, you will find threads where supplement company representatives dialoge with supplement users and those users comment on the effectiveness of the various formulations. I have found that spot to be the absolute best source of amino information simply because no body really cares about aminos except bodybuilders and health food fanatics and since bodybuilders are more dependant on the immediate results, I think they are probably the better source of information. Thats my take and I think Rico would probably agree with me on this.
Hawk,
You've got me dude, I tend to be a skeptic, but you outclass me by far! I think you have Ginseng nailed down pretty well at this point. There are studies on the Red Ginseng but not on the common (White) Ginseng, and most notably no comparison studies, so who knows? If it works, use it!
- George
It seems that pentox has generated a lot of buzz for helping fight peyronies and curing it in the medical community and on this forum. I think most of us have seen the published study or report from Dr. Lue who seems to believe in this. After carefully reading through the pentox study this short paragraph seemed to catch my attention and make me question just how good the pentox is for fighting against long standing peyronies and calcified plaques. Previously I got the impression from our discussion on the forum that pentox can over a long period of time (like a year) get rid of some calcification or still help with peyronies. The bolded phrases below seem to dispute the optimistic things we have been talking about on here regarding pentox. I mean only 2-3% have seen full or partial resolution of calcified plaques, this is less than spontaneous resolution of ones peyronies. Am I missing something here?
"We have not generally used it for patients with chronic stable lesions or with heavy calcifications, since we presume these to be stable and less amenable to pharmacologic intervention. We have seen improvement of this nature (full or partial resolution of calcified plaques) in approximately 2–3% of our patients. Stabilization of the disease process is common, but is far more difficult to distinguish from the natural history of the disease."
ComeBackid,
I think it was the rat's dicks that they had positive results with....maybe we need to eat more cheese...brillant:)!!!
Rico
Rico,
The clinical tests they did were on Dr. Lues patients, they did do a study on rats, but in this particular study Dr. Lue is talking about a couple of his different patients, and apparently there is a study to be published soon. You seem to be overly skeptical of pentox, it really isn't just a blood thinner like vitamin E, and it has helped my erections and helped straighten out my erections so I'm going to stick with it, I can tell I"m getitng fuller erections as well.
Quote from: pudder135 on October 11, 2006, 08:28:59 PM
I mean only 2-3% have seen full or partial resolution of calcified plaques, this is less than spontaneous resolution of ones peyronies. Am I missing something here?
ComeBackid, I don't think there are any natural spontaneous resolutions of calcified stabilized plaque. In fact by definition it is stabilized.
Quote from study
Quote
"We have not generally used it for patients with chronic stable lesions or with heavy calcifications, since we presume these to be stable and less amenable to pharmacologic intervention. We have seen improvement of this nature (full or partial resolution of calcified plaques) in approximately 2–3% of our patients. Stabilization of the disease process is common, but is far more difficult to distinguish from the natural history of the disease."
I bolded the sentence above and wonder if it is connecting that sentence to pentox but saying it is difficult to tell if the stabilization is due to the natural history or the pentox. There are very many men on here that will tell you of Peyronies Disease progressing for over a decade. Stabilization is no small thing. There are many that wish they could wind back the clock 6 or 7 years and stabilize the disease. If Pentox is even associated with stabilization it is significant. If it reverses 3% of heavy clarifications, that is significant, especially in addition to the reversals in earlier onset Peyronies Disease. Some of us that spend time trying supplements first, may well be wasting the main window in which pentox would have been most likely to help. No one ever suggested it approaches a cure.
ComeBackid,
If you go to post #147 and read this and then go to jaqxjr posts, he has five of them...he post from dec.05 to jan.06, for about a month.
He is using trental(pentox) 3 x 400mg, cialis 1 x 5mg, and l-arginine 5 grams day...
His Urologist is Dr. Rijfer/ULCA
He claims he had great results, went from 50 degrees to 20 degrees, plus he list his other supplements and seems very sharp, talks about the right kind of vit E ect.....I think you would like his post, plus he breaks down the formula of the pentox/cialis/arginine and feels it is the way to go... he signs his name as Mike(PhD)...
Rico
Hawk,
The way I read the 2-3% statement was that if say there was 100 patients being treated for peyronies with pentox (trental) only 2-3 would see any kind of improvment from the pentox. I equated that to say 100 people got verapamil injections and 2-3 saw improvment. If that were the case we on the forum would reject that treatment protocol and probably label it a failure claiming that the % improvment is no better than spontaneous resolution.
"ComeBackid, I don't think there are any natural spontaneous resolutions of calcified stabilized plaque. In fact by definition it is stabilized."
I'm not so sure just cause ones plaque is calcified means its stabilizied, if by stabilizied you mean never getting any worse and has gotten as bad as it will get. The reason I say this is cause the experts seem to believe that calcification comes on slowly not all at once, spreading around like a spiderweb. The report by Dr. Lue would seem to be inconclusive and a further study with a control group and many more participants is warranted. Too me it just seemed like there was a lot of excitment here on the forum for pentox and optimism, so I decided to carefully read the study and it made me go "whoah wait a second," this doesn't look that promising at all, I suppose that my initial excitment is gone and the doomsday picture of having this hard unflexible penis for life is setting in.
ComeBackid
The article by Lue is a little confusing to me (at this moment) - for he reports in his discussion having soon-to-be published data on 16 patients, and yet refers to "2-3%" response related to improvements in calcifications with medical treatment.
Since just one patient out of 16 would be 6%, the "2-3%" cannot refer this group. Perhaps he is refering to a larger group of patients - say all medically treated patients??? I think that is about right - that about 2-3 percent of patients treated medically see an improvement if they have calcifications.
Thus, I see the argument (not well articulated IMHO) is this: this is one patient, and since calcifications DO rarely improve, it is possible that the effect in one patient is due to that unlikely event, rather than due to the pentox. That is called a qualifier. It is simply being honest and saying "this MAY be due not to the medicine we are reporting on, but chance.
So, it is confusing. Of the first patients published (I know of but three individual patients reported as case reports), only one had calcificiations (Lue's), and that one patient got better (his calcifications got better). The other two cases were the Priapism cases that did NOT go on to fibrose on this protocol (but never had calcifications).
In a rat model, the model is generally of shorter duration (approximately 45 days), and so calcification is not seen, so the ability to make that better is not examined.
I am concerned that you are doing the thing that you sometimes do, which is to hit the panic button and engage in black and white thinking. Pentox is not either a panacea or a total bust; none of the therapy we take is like that. The fact that you feel like this is "doomsday" has happened in your head - nowhere else.
Tim
I have been taking the Peyronies Disease trinity of drugs (l-arginine, viagra, pentoxifylline) for two months, l-arginine for much longer. I have regained significant flaccid size. This is subjective, I know. It is, however, accurate.
I have noticed no difference in plaque size.
Based on these two observations, I am very encouraged. I will continue on them until something better comes along.
Liam
BTW, without looking, wasn't the case study of "pentox" somewhere between 2 - 5 years?
Tim,
Rest assured that I am NOT panicing, I think you often mischaracterize what I say, I guess this could be due to the fact that you can't see me in person and the way I express myself. Talking online doesn't always catch the true mood of the conversation.
I was just pointing out that the Lue article is a little confusing as you have re-stated as well. It seems that the positive results on calcifications are not as good and optimistic as what we have been stating on this forum. While it is good to be optimistic and forward looking, it is also good to be realistic. Right now there really is no proven treatment for peyronies, until we work harder in the Peyronies Disease awareness arena we will be sitting around and talking about things that might work like VED's and pentox and other treatments. We have got to get more mortivated and get the word out to attract more members to our forum and educate the public to draw an interest in research. I would take this time to encourage anyone who has spare time on their hands and wants to help our cause to PM Blink or Hawk and ask if there are any open projects they can volunteer for that are in the works or on hold, or if there is anything they can do to help better our cause.
Liam,
Thanks for the update, seems as if your seeing some positive results from the protocol, I'd say increased flaccid size is better than nothing, are you currently working with a VED or the 26 week protocol, how is that coming a long for you?
ComeBackid
Quote from: Liam on October 12, 2006, 05:01:18 AM
I have been taking the Peyronies Disease trinity of drugs (l-arginine, viagra, pentoxifylline) for two months, l-arginine for much longer. I have regained significant flaccid size. This is subjective, I know. It is, however, accurate.
I just started the trinity yesterday. However I've been on pentox and aceytl-l-carnitine for 2 months and one month respectively. The protocol I'll be following for the next 10 weeks until my next follow up is this:
400mg pentox 3x daily
1000mg L-arginine 3x daily
500mg acetyl-l-carnitine 4x daily
25mg viagra 1x daily
My insurance will fully cover a pump, and my urologist had one he gave me to try out. I don't have any issues with ED aside from peyronie's. What pump treatment protocol is typically recommended for straightening purposes, and is there a specific pump I should be looking at?
History:
28yo type 1 diabetic, symptomatic of peyronie's ~3 years, indentation on left side of shaft apparent while flaccid, and a slight leftward curvature when erect. approx 90deg upward bend ~ 1.5 inch away from head. also beginning to display symptoms of dupuytren's.
Liam,
Yes the case study was for two years....
I have been on the forum since July...lurking since May/June.... peyronies started in May....was reading everything for days on the condition.... I don't know how I missed the pentox/arginine/viagra.... I guess I never heard anything that positive about it till now... I was so turned off by the potaba reports that when I did here pentox my stomach turned, but now I know it is a blood thinner and doesn't effect your stomach like the potaba and colchine...
I didn't even know you where taking this Liam....I know some of the members are taking trazdone....
This person who posted #147 Mike(PHd) jagxjr does anyone know him, he is really high on this combination, although he chooses cialis for the phe5.....plus he seems to be on the same page with George on Vit E ect.... where is he now, I sent him a personal pm, but got no response....
I know soxfan who I respect and has helped me with personal pm's think it is good, But his doctor won't prescribe it for him....why???
Tim is very smart and knows his medicine, but he still isn't on pentox, but says he will start taking it, but why does everyone wait if it is the best thing out there?
Is the reason people don't want to stop what they are doing know? Don't want to mix too many drugs, don't want to go to the doctor, doctor won't prescribe it, not sure if it will work? The cost? That study started over four years ago....2002...where is it? Then when Levine says if you don't want to get the shots, then I would take pentox.....
I'm going to my urologist soon, and looking at other urologist also in the area, I have my VED which I'm glad and I thank God and people like Angus and the Old man, Angus has been a huge help keeping me motivated and realistic about the VED...these people are truly God's servants.....I take my supplements, mostly Opc's and now red ginseng(prince of peace) and a arginine blend(xyience noxcg3), and exercising heavy.....clean living with a good diet...I had cycled off the supplements for several weeks, now that I'm back on I can feel the circulation is better in my unit....I do believe in cycling, I know ginseng can build up in your system, this is why people cycle off if it, plus even with arginine I feel it is good to take a couple of weeks off here and there....even the manufactures of these supplements suggest it.... something tells me that the Viagra or cialis would be a good thing for peyronies...although getting a erection and pumping is not a good thing, just the opposite, this is where one has to be careful, for if you don't have ed it doesn't take much stimulation to get erect on these drugs, I know, I took one with a gal as a party drug years ago, I had wood for hours...the wind blew and I was up:)....
I just wish we had more people taking this and the doctors where all on board with it, I don't think we have more than three or four people on here taking the whole gambit....and maybe it is the expense of Viagra daily....
I hope to have a answer for myself soon before my visit....I know he will try to talk me out of this, the doctor that is...
Rico
Jon,
You can go to www.vaccumtherapy.com for the protocol...this is for a three cylinder VED you can go to Augusta medical web site or you can build your own..... if you go the the VED thread on here you will find it has the best information on VED use on the web..... I wouldn't do the VED exercises without reading it all and studying it for several days... take your time....there are some veterans on here with the VED, listen to them....
I would like to know who came up with your Trinity of drugs, did you research them or did your doctor have these in mind...do you live in the US? I'm also looking at this Trinity of drugs and starting to think it might be the state of the art sort to speak with the VED.... how long have you had your symptoms? Did you try shots or edma or anything else?
If your insurance will pay for the VED then I would go with the somaerect stf, just because it has the three cylinders...I believe in this protocol for remolding the plaque.....Ved's are the same and a pump is a pump and if you don't have ED like myself, then the constriction rings ect... don't matter, but what does matter is that you have the three cylinders of hole your penis in the proper position for remolding, now some get away with two cylinders, but if your going to get it paid for, I would think everyone on here would go with the three cylinder and the newest one that eliminated the pinching...
Take care and thanks in advance for the information...
Rico
ComeBackid,
I am sorry if I mischaracterized what you feel - but your words suggest that you are discouraged, since you said: "my initial excitment is gone and the doomsday picture of having this hard unflexible penis for life is setting in." That may not be a "panicked" terminology, but it is extremely negative in it's tone. it is true that we do not see what the other person is feeling here - but it is hard to put a cheerful or optimistic tone to those words!
You now say: "It seems that the positive results on calcifications are not as good and optimistic as what we have been stating on this forum. While it is good to be optimistic and forward looking, it is also good to be realistic."
Again, I believe that you are misreading his report. This is ONE patient - that is all. It may be premature to assume that all patients with calcifications are going to get better on pentox just because this one patient got better, but in any event, that is not what Lue is saying in this discussion, nor is he saying few patients will get better on it. He is admitting that this one patient may have gotten better randomly and not because of the pentox - he HAS to say that to be credible.
But the weight of scientific data suggests that this can make many patients better. It has made one man with calcifications better. It is PREMATURE for you to start saying the blush if off this drug because of how you have read the discussion.
Tim
Quote from: Rico on October 12, 2006, 11:59:28 AM
Jon,
You can go to www.vaccumtherapy.com for the protocol...this is for a three cylinder VED you can go to Augusta medical web site or you can build your own..... if you go the the VED thread on here you will find it has the best information on VED use on the web..... I wouldn't do the VED exercises without reading it all and studying it for several days... take your time....there are some veterans on here with the VED, listen to them....
I started reading the VED thread off and on a number of days ago. I'll likely sit down and read the entire thing end to end a couple times.
Quote
I would like to know who came up with your Trinity of drugs, did you research them or did your doctor have these in mind...do you live in the US? I'm also looking at this Trinity of drugs and starting to think it might be the state of the art sort to speak with the VED....
I did some research here, and I've been lurking for months now, and approached my doctor with them, and together we formulated the regiment I'll be on for the next 10 weeks, as well as fitting a VED into the mix.
Oh, and yes, I do live in the US, San Antonio, TX to be exact.
Quotehow long have you had your symptoms? Did you try shots or edma or anything else?
~3 years. no shots or anything. Up until 2 months ago it was all vitamin e. then pentox, and then acetyl-l-carnitine.
Quote
If your insurance will pay for the VED then I would go with the somaerect stf, just because it has the three cylinders...I believe in this protocol for remolding the plaque.....Ved's are the same and a pump is a pump and if you don't have ED like myself, then the constriction rings ect... don't matter, but what does matter is that you have the three cylinders of hole your penis in the proper position for remolding, now some get away with two cylinders, but if your going to get it paid for, I would think everyone on here would go with the three cylinder and the newest one that eliminated the pinching...
Take care and thanks in advance for the information...
Rico
insurance will pay for most of it. I'm weighing the amount it won't cover vs the cost of making my own custom sized, multiple chambered solution.
ComeBackid,
I really agree with Tim on this. Even for people WITH calcifications, if Pentox can deal with everything but the calcifications themselves, that to me represents potentially huge progress. In the meantime Pentox itself is relatively new on the Peyronies scene. I think the top uros who are administering this therapy will be continuing to tweak it over time and eventually they WILL likely have a combination that eats the calcifications themselves. But this is not likely to happen overnight. But it will be best to be ready when it does happen and have everthing but the calcifications as cleaned up as possible and to me the fastest way to achieve that at this point seems to be the Pentox formula. I also went back and took a look at jaqxjr's posts as suggested by Rico. I find it fascinating that he was taking Vitamin E along with the Pentox triad and achieving what he considered to be great results. BUT look for yourself at the TYPE of E he has taking. 400IU alpha tocopherol + 300mg gamma tocopherol. How interesting. I have gotten great results from the E I am taking and it just happens to contain 400IU alpha tocopherol + 273mg gamma tocopherol. I think the uros are still not getting it on Vitamin E. They are simply putting people on synthetic alpha and getting poor results and then throwing the baby out with the bathwater. I am certain that if they used natural alpha tocopherol plus natural gamma tocopherol, they would be getting far different results, but the medical community is often very hard headed when it comes to things like that. They just say things like "Vitamin E is vitamin E" or "Alpha tocopherol is the only vitamin E component with recognized nutritional value" and thats where they stick their feet in the ground and refuse to budge. The current formula is missing certain components like 1) antioxidants like Vitamins E and C, 2) anti-inflammatories like mangosteen and aloe vera, and 3) calcium mobilizers like Vitamins D and K. If a few of these things were added to the mix, I am confident that they would improve the result, but at this point, it is a slow process, and the docs are basically feeling their way along with a lot of outcome work to do to find out what really works and what doesn't. And I can understand this in a way, because if they take a shotgun approach, they risk having successes and not really knowing how to duplicate them. But one thing is certain, they are only going to gradually perfect this treatment as they go along, and those who get on board now will likely be glad they did in the future. All in all, I think this is a much better option than surgery for most people and it is just about the only option that is getting consistent results. I continue to be very upbeat about it in spite of its limitations. The whole key is as to how Pentox is combined with other agents. Note this quote from http://www-dsv.cea.fr/content/cea_eng/science_vivant/part/brevets/pharma/1233.htm (http://www-dsv.cea.fr/content/cea_eng/science_vivant/part/brevets/pharma/1233.htm) :
QuoteBecause it acts synergetically with the other chemical entities, pentoxifylline can be used at relatively low doses compared with the original prescriptions, thereby minimising its side effects.
Wishing you the best,
- George
George,
Yes I found it interesting too on the Vitiamin E and I have taking the Isomer blend from GNC, this has the same formula in it that you are taking....
Also it is not what you take, but what you assimilate...vit E needs to be taken with a meal, it is fat soluble and on a empty stomach is doing nothing, you are pissing it away....
I just read the articles from the conference on Urology this spring....you can download them from urotoday... just put in peyronies...they had a article on injections...they think they are good, it came out in may of this year...
Also I found it interesting since we were talking about taking pictures ect...they claim that the only true way to get the the real curvature is through ICI(intracavernosal injections), VED or taking a photo isn't the true curve, maybe because the peyronies sets of ED or weak erections....
The only thing that worries me is taking too many blood thinners at once, I know this Mike(PhD) took pentox and E ect...and I have seen pentox suggested with E, but then read don't do ginkgo and ginseng with blood thinners....how much is too much? I guess if I would go on the pentox/arginine/viagra I would just do that...seems to cover all the basis other than a multi vitamin and good diet....
I have to respect the doctors who are focusing on this, why does Carrol, Levine, go with verapamil and VED? Levine seems to think(and the recent report from the AUA this spring comlies) that the shots are the way to go, if you don't want to do that, go with pentox....and then they had another study from there site APDA that said most peyronies are prescribe Vit E 1st...second potaba....third verapamil....
Is it the lack of research, or off label use....awareness?
I look at pentox/arginine/viagra and say, we don't even have a thread on it, but the case study was from Feb. and Mike(phd) post was nine months ago, Liam has been taking it for two months...DannyOcean is taking it, now Power and Jon.....ComeBackid is taking two parts of the formula...is it the off label cost of Viagra? soxfan can't get his doctor to prescribe it....if my doctor told me he wouldn't prescribe it I would kick him in the nuts and ask him how it feels to have a bent dick...it isn't that I can't get the script, I have to sell myself on it.....
Has anyone ever talked to this Mike(PhD)....jagxjr...who is he, is he real? I would like to talk to this guy....
Rico
the cost shouldn't be too bad if you can get a script for it.
I'm doing 25mg/daily. So my doc wrote me a script for 8 X 100mg Viagra, and I bought a pill cutter. I can't think of any reason why an insurance company wouldn't cover 8 pills a month. According to my Uro, most cover 6 - 12 a month.
Tim,
I understand what you are saying that out of the three patients, only one had calcifications, and he got better, this is hardly scientific.
"Perhaps he is refering to a larger group of patients - say all medically treated patients??? I think that is about right - that about 2-3 percent of patients treated medically see an improvement if they have calcifications."
How many medically treated patients are there? 2-3% still warrants a very poor response rate, this drug needs much investigative work with more studies, this is what I'm pointing out, 2-3% response rate is less than the percent of patients who have spontaneous resolution. If Dr. Lue is not talking about that one of the original three he tried pentox on, than the 2-3% must be referring to another study he has done or knows about, where is this study? What were the controls? How many people were in the study? How many had clacifications? Dr. Lues report is more confusing that scientific, in fact it seems to lack scientific evidence.
George,
I know you have been preaching about the vitamin E's for awhile, that is interesting to see that fellow was also on the specific kind of vitamin E, something that should be investigated more, although was it the pentox that cured him? Spontaneous Resolution? Or the combo? I can't take vitamin E because it thins my blood and gives me problems when I use the VED. If it is true that you used that same kind of vitamin E and saw improvements that would be more impressive I'd say.
Jon,
My cheap insurance company will only cover 6 pills, I may take them on under this subject, I'm currently in the appeals process attempting to get the full refund for the VED which they denied me.
George,
If you were going to duplicate as close as you could with OTC supplements....what would you take, say would it be opc's for the pentox along with vit e(of course the complex you recommend), and arginine, and a pde5 like htw or ginseng with gingko...... opc/arginine/htw/ginseng.... so you think this would give one the same effect? if you were in good shape, no ED and you where working on your circulation.... also do you think noni juice is just as good as the mangosten? Or would you say one would be better off with the pentox/viagra.... I know everyone is different, just your thoughts...
Rico
ComeBackid,
What I discovered about the Vitamin E is that a big part of the bleeding problem is related to the fact that Vitamin E depletes Vitamin K, so I am just supplementing the Vitamin K to offset that and also rutin to strengthen my capillaries. It is important to note that different 'blood thinners' (which is a misnomer since they don't really thin the blood) work in different ways. Some deplete Vitamin K, others attack fibrin, others attack platelets, etc. The whole blood clotting process is a complicated affair that involves a number of different strategies on the part of the body. I am actually taking a number of blood thinning agents in small doses. For example, I am also taking nattokinaise which is an enzyme that does not interfere with the clotting process itself, but acts against fibrin and is a powerful agent to dissolve clots within the blood vessels. This is a neat characteristic since it has little effect on clotted blood within the wall of the blood vessel which is what is plugging the hole. It was discovered in Japan when a doctor figured out that people who ate lots of natto never had heart attacks or strokes and neither did they have bleeding problems. Where one has to be really careful with blood thinners is if you are using Coumadin, Plavix or some similar drug that really is many times more powerful than supplements in terms of promoting bleeding. But if a supplement is a 'blood thinner', it is helpful to understand what gives it its 'blood thinning effect'.
Rico,
The advantage of prescription drugs over supplements is that their effect is much more targeted, powerful, and efficient. But as to 'drop in replacements' so to speak, for Pentox (I know of no supplements which block TGF-beta at this point) it would be an arginase blocker like sunflower seeds, or more preferrably, Norvaline. For the Viagra it would be Horny Goat Weed. I really am not that familiar with Ginkgo. As for Ginseng, remember, I believe Tim was saying that it is an analog of Trazadone, not Viagra. OPCs are great, I am taking them, but I really don't recall most of what I have read on their mode of action at this point. Mangosteen is fantastic for inflammation. Like aloe vera, it is a powerful anti inflammatory agent that, unlike practically everything else, does not irritate the stomach. As for Noni, I would beware of Noni. Noni has some fantastic capabilities, but it also has a dark side. It can poison your liver. If was needing to take noni for anything, I would request that my doctor monitor my liver function with blood tests just to make sure nothing is going on there. Noni is widely marketed, but most people are not aware that people have died from taking it. Other great similar products are Acai and Goji, also Wolfberry. But now we are getting off the subject of Peyronies and into something else. You finally ask if one would be better off with prescription drugs than with supplements. My answer to that would be that if the supplements aren't doing the job, go for the prescription drugs. I would also qualify that by saying that if you have a debilitating issue with Peyronies or if it seems to be getting rapidly worse, DON'T FOOL AROUND WITH SUPPLEMENTS! Go to a qualified uro and go for the latest and most effective stuff out there, Pentox being at the top of the list.
Sincerely,
- George
Does anyone know if it is legal to buy viagra from overseas, someone had stated it isn't. Soxfan gave me a link to a european company that sells liquid viagra, but he lives in Canada, so the regulations are different there for sure. I no longer have any drug coverage through my insurance, per month it was to expensive so I dropped it. Viagra is just WAY to overpriced here in the states to purchase it at the rate they are selling it at. I've heard some people say to cut up the pills, although I don't think the drug is dispersed evenly throughout the pill so one might want to be careful with this. With the prices ridiculously high I the American consumer am left with either paying way to much for viagra, or taking a risk on safety and getting it oversees like soxfan.
I have been reading this guys post, the one where he gives the Patent to the combination of drugs, the pentox/cialis/arginine is really interesting and his post seems to hold water....what does everyone else think...are you out there Tim... I sent this guy a personal pm and a email but haven't heard from him... Tim what do you think of the cialis vs the viagra, one might think that it being in the system longer working with the pentox it might be better, or not??? This will be my choice not my doctor, sor o If I choose to write a script for this, I want to go with the best choice, any suggestions out there viagra vs cialis?
also do you take the arginine with with pentox or at different times, I know you take the pentox three times a day, so would one mix this with arginine with food and then just take the 25mg viagra at night, I also have heard that you shouldn't cut up viagra, not mix evenly.... is this true? What one spends on supplements if you were just going to do this, it might be the way to go...for some reason and it is just a gut feeling the daily viagra or cialis makes sense to me....
Has anyone heard of this mike(phd), had contact with him....
Rico
ComeBackid: "How many medically treated patients are there? 2-3% still warrants a very poor response rate, this drug needs much investigative work with more studies, this is what I'm pointing out, 2-3% response rate is less than the percent of patients who have spontaneous resolution. If Dr. Lue is not talking about that one of the original three he tried pentox on, than the 2-3% must be referring to another study he has done or knows about, where is this study? What were the controls? How many people were in the study? How many had clacifications? Dr. Lues report is more confusing that scientific, in fact it seems to lack scientific evidence."
I do not believe that his report is too confusing - but I accept that you are confused.
A case report is not science - it is a single report of a single person. Of course Pentox needs more research to be done. But for you to perseverate on the "2-3%" as if that refers to pentox treatment is odd, frankly.
It boils down to this: that number refers to pentox treatment; any treatment, or to no treatment (spontaneous healing). I have stated that I believe that it refers to any medically treated patient, and does not refer to pentox alone. Medically treated means treated with any medicine. Not just pentox - any medicine.
George and others have stated that it is sort of believed and accepted that the natural history of a calcified lesion is that it does not spontaneously resolve. That means to me that he is refering to ANY MEDICAL TREATMENT when he states "2-3%". Since we have already agreed (I thought) that there are not enough patients to have a "2-3%" for pentox treatment, then he cannot be refering to pentox treatment. He is not refering to a mystery study that has not been done, nor is he refering to patients getting pentox who have not been written up yet.
So, IMHO, it is not that confusing - it is simple and straightforward. He treated a patient with a medicine that animal data strongly suggested would work, and it worked. It worked better than many medicines work - usually.
This is not confusing. It is not a watershed moment in Peyronies Disease research - it is just a case report. But what makes it interesting is all the animal data that supports the NOTION that it whould work at all, and the fact that a human responded to it, did not get sick, and in fact got better. To me that is exciting.
You seem to be denegrating this paper now, because of this "2-3%" issue, and I believe that comes from your misinterpretation of the writing, and the data he presented. I hope that this helps explain why I think that you are misinterpreting the paper. I say I hope so, for I do not want to continue to discuss this.
Tim
In Urotoday I was reading a study on pentox and viagra for ED and they concluded that it works better as a combo....you have to go to the advance search engine to find the report...I was typing in pentox and pde5 and stumble on it.... I always thought they stumble on this looking for a cure for ED...this is where the money is...if you think about it the ved is for ED too.... now pentox and viagra being use together for ED is found to work also for peyronies....
Rico
Well no need to order offshore I stumbled across my dads viagra of 50mg pills and cut them in half to take at night for now. My question is what is the recomended dosage of viagra for the pentox, l arginine, viagra trio? Is it 25 or 50?
I think I'm going to order 7 viagra pills at 100mg and cut them into fours with a pill cutter, this should do the trick for now. This crap is so expensive though its not even funny, even with insurance coverage a month supply for me would be $350.
Quote from: pudder135 on October 13, 2006, 12:24:31 AM
Well no need to order offshore I stumbled across my dads viagra of 50mg pills and cut them in half to take at night for now. My question is what is the recomended dosage of viagra for the pentox, l arginine, viagra trio? Is it 25 or 50?
I think I'm going to order 7 viagra pills at 100mg and cut them into fours with a pill cutter, this should do the trick for now. This crap is so expensive though its not even funny, even with insurance coverage a month supply for me would be $350.
My uro wrote me out a prescriptions for 100s and this is what I do. I think each dosage comes out to a little under $3 so you're looking at around $90 for a month supply. Not cheap but definitely better than it would be buying 25s or 50s.
As for L-Arg, the uro prescribed 1000mg/day but I upped that to 5000mg/day (on the advice of Hawk). For the Pentox I take it 3x/day...not sure of the dosage.
By the way, I'm also a patient of Dr. Rajfer's at UCLA. His prescription was 25mg/Viagra daily, 1000mg/L-Arginine daily and 400mg/Pentox (just checked the dosage) 3x daily. About a month after I saw him I asked about VED and he said "definitely not."
To his regimen I've added 4000mg/L-Arginine, 2600 mg/ACL, 1000 mg/Gingko and a multi. I'm contemplating cutting the Gingko because I've heard it's best not to take that when you're on Pentox. However, I haven't seen any scientific stuff backing that up. Does anyone know of anything?
Did your doctor instruct you to take the 25mg during the day, or just before you go to bed at night? I think the cost you are paying for viagra per month is including your health insurance discount? I no longer have the drug discount cause it was to expensive to buy per month.
ComeBackid
DannyOcean,
I have read that you shouldn't take gingko with blood thinners...I don't think You would need gingko with pentox....I'm taking gingko and ginseng, I know if I go on pentox I would stop taking them....gingko articles also say don't take it with anti depressants like trazdone, but I know the guys on here are taking small amounts of this and as a off label use..
Lue has his clients take just the pentox/arginine/Viagra and no other supplements.... of course a multi would be fine....but that is all....I wouldn't even take aspirin... 400mg x three is a good dose of pentox and should do the job....I wonder why he switch to Viagra from cialis? that is your doctor....does he use VED at all, ever? What is the total cost for your meds? Did they have you cut your pills or did they have you get 25mg pills? Thank you for your answers and God Bless...
Rico
DannyOcean,
Since you seem to have one of the better doctors out there, maybe you can share with us some information....what are you conditions, how long you have had peyronies, curve ect...what the doctor said, did he think this would help you in a certain amount of time, did he seem positive with this mix of medicine...you seem like a sharp guy, what is your gut feeling...I know my doctor shuffled his feet and told me I was pretty much screwed...was your guy more positive with the results of the pentox/Viagra/arginine???? I'm glad you are on this forum...
Rico
Thanks for the clarification, to me it seems odd that Dr. Lue would include in his pentox case report something about other medical treatments, this 2-3% I thought was meant in the context that Lue had another report that showed calcifications improved in 2-3% of people taking pentox. However, since Dr. Lue was really trying to say 2-3% improvment in all other medical treatments this is still a bad picture for people with calcifications, except if pentox proves to be helpful, obviously more studies need to be done. To me it seems that Dr. Lue did not articulate very well what he was trying to say, even you seemed puzzled at first. Please don't feel the need that you must explain or discuss anything with me, I don't read case reports, or think like a doctor on a daily basis, so I'm not familiar with their style of reporting, literature, and medical reports. I'm cautiously optimistic in regards to pentox and now relieved to hear that the 2-3% was meant on all other treatments success rate and not the pentox itself. I'm very cautious to except how a drug will work on animal studies, I'd like to see a human test, I thought Dr. Lue had one of these going or was publishing one. When I go to see Dr. Mulhall I intend to ask him if he prescribes pentox for his patients, he seems to be skeptical of it, acknowledging Dr. Lue does it but not accepting it or prescribing it himself. HOpefully we will be able to gather enough data among our members to come to a logical conclusion on pentox. I wanted to make a point to note that I like Liam also seem to have increased flaccid size, my plaque seems to be the same though, my erections are more full and fill up better, I don't know if the thinned blood is allowing better hang during flaccid and erect states or not, but I believe this is a noteworthy observation since someone else has noted it as well. Perhaps Rico and DannyOcean could fill us in if they are also seeing increased flaccid size since starting pentox? Mine came on the next day after starting the drug.
ComeBackid
Interesting link since soxfan told me about how to buy viagra online with no prescription and at a really cheap price.
http://www.msnbc.msn.com/id/15240265/
Hey guys, I'm just a couple weeks into my Pentox treatment (400mg 3x/day, L-Arginine 3g/day) and can concur with the bigger flaccid hang you've seen.
The one exception being the couple of days right after sex last weekend, where I was essentially a deflated balloon for 2 days straight (abnormally so IMO). Of course I had only been on Pentox for 1 week at the time, at 2x/day instead of 3x.
I must point out, the instructions given with my Pentox perscription specifically say to allow 8 WEEKS for the drug to gain its full effect, and it also specifies NOT to miss dosages, and explains what to do if you forget a dose (kind of reminds me of the instructions that used to come with my wife's birth-control pills). So, unlike supplements, it appears important to be "on" this drug consistently.
A few follow-ups:
1. I have a pretty mild case of Peyronies (I'm thankful for this everyday). I'd say my curve is 10-15 degrees, no pain, can have sex, a loss of some size but not all that much. It first appeared about 4 months ago and has neither seemed to get better nor get worse during the period (although I think I'm going to start taking pictures of myself so I have a better idea of this).
2. The doc didn't say when to take the Viagra. I've been taking it at night to prevent any "unfortunate incidents/spontaneous erections" during the day. :) If someone has reason to believe that taking it in the morning would be better please let me know.
3. Dr. Rajfer does seem up on stuff. He wasn't the "warmest" dude when I met him but I'd rather have a doc who knows his stuff and isn't Mr. Personality than the other way around.
4. Rico, I've seen you mention the Gingko-Pentox thing before...however, what I haven't seen specifically is anything that recommends against this. If you could point anything of this nature out I'd appreciate it.
5. I need to go consult my Pentox instructions a bit closer (in terms of what to do about a missed dosage, etc.). I'm pretty close to the 8 week mark so hopefully I'll start seeing some of those benefits soon!
DannyOcean,
First of all everything I have read on the pentox/arginine/viagra is that you take the viagra at night...I have read that you should take 50mg up to at least two times a week but I think they meant in doses of 25 mg, some take cialis, which is a small amount everyday by the post on here by jagxjr last Jan..... some take pentox twice a day, but most seem to take 400 three times a day....I thought it was interesting when George pointed out the pentox could be use and effective in smaller doses when use with other drugs and be effective....I don't think they have it down to a science yet....more like human rat dicks out there right now...which is good in my opinion....one might be able to take pentox once a day and cialis once a week and get the same effect....maybe if one took Isomer vitamin E with 25mg of viagra at night and pumped with a VED for six months... maybe OPC's with cialis once a week with VED.... right now I think other than Horny Goat Weed I'm on as close to a OTC supplement one can get to, to mirror the pentox/viagra...I do the arginine....but like George said, the medicine will go more direct to the source...which I do believe also... My gut says that the PHE5 inhibitors taken daily makes sense to me, and the combo of the two has some merit.....why they wouldn't want you to do the VED?? Is it because of the thin blood? this is the confusing part, or do they want to see if this is what is working? I'm going to keep pumping myself, I haven't gotten any pain from it and my condition is worse from it, I will say from a mental stand point it is positive, only takes 10 minutes a day and afterwards you are hanging great, it looks good to be chubby...
It would be a cruel world if there was reincarnation and we all came back as rats....and rats to cure peyronies disease, it wouldn' be fair:)!!
Rico
If you put gingko in any search engine and read under side effects or drug interactions, it will say don't use with anti-coagulants... some say vitamin E... some say asprin... I have read trental also... they recommend not to take it if you are going in for operation, it is all common sense really, don't do too many blood thinners at once.... pentox is strong, and if you are taking it three times a day at 400mg.... I wouldn't think you would benefit from more blood thinners like gingko... gingseng and gingko are use together.... and if I'm using Vit E, a Isomer blend with it... and I'm doing OPC's, these are all circulation... and since I'm taking smaller amounts of gingko I'm still taking the Vit E, but I'm aware of it and watch myself(nose bleeds ect)...I haven't notice anything and I'm getting good erections at night and morning since starting the gingseng and gingko.... my guess is more from the gingseng....
I think George has the right idea on his supplements, he doesn't over do any of them..but is consistence with them....
Not too long ago someone on this forum had the audacity to ask if Vitamin E could actually cause Peyronies. Actually I think that is a very good question and, although I strongly advocate high doses (800IU) of Vitamin E per day, I would have to answer that question with a "maybe". I think it is entirely possible that Vitamin E in significant doses could cause Peyronies. In fact I think it is extremely likely that high doses of Vitamin E could make Peyronies worse. Let me tell you why:
Not this study on Pubmed circa 2004-
Effect of vitamin E supplementation on vitamin K status in adults with normal coagulation status
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15213041&query_hl=1&itool=pubmed_docsum/ (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15213041&query_hl=1&itool=pubmed_docsum/)
This whas what one might refer to as a "smoking gun" study in terms of Vitamin E / Vitamin K interaction in the human body. Researchers did find that high doses of Vitamin E were indeed having a detrimental effect on Vitamin K, at least on those undergoing anticoagulant (likely Coumadin) therapy.
Next study circa 2006-
Extrahepatic tissue concentrations of vitamin K are lower in rats fed a high vitamin E diet
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16857056&query_hl=1&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16857056&query_hl=1&itool=pubmed_docsum)
This whas what one might refer to as a "smoking gun" study in terms of Vitamin E / Vitamin K interaction in the human body. Researchers did find that high doses of Vitamin E were indeed having a detrimental effect on Vitamin K, at least on those undergoing anticoagulant (likely Coumadin) therapy.
Next study circa 2006-
Extrahepatic tissue concentrations of vitamin K are lower in rats fed a high vitamin E diet
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16857056&query_hl=1&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16857056&query_hl=1&itool=pubmed_docsum)
Now isn't that interesting. Now we have a rat study showing that high dose Vitamin E depletes Vitamin K in rats. From these two studies I think it is very reasonable to conclude that it is extremely likely that taking high dosage Vitamin E actually results in our bodies experiencing Vitamin K starvation.
So we all know (I think) that one of the roles of Vitamin K is to prevent bleeding. However, I think few are aware of the more recent connections being made between Vitamin K and Calcium metabolism.
Take a look at this study (hot off the press Oct. 2006!) -
Molecular mechanisms mediating vascular calcification: Role of matrix Gla protein (Review Article)
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17014561&query_hl=4&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17014561&query_hl=4&itool=pubmed_docsum)
This study basically states that there is a specific protein (MGP) found in the human body that inhibits calcium buildup in the wrong places (non-skeletal tissues). It goes on to state that this protein is highly dependant on Vitamin K.
Do you see where I am leading you with this? If you are taking high doses of Vitamin E without balancing them with Vitamin K supplementation, you are going to deplete your tissues of Vitamin K. This in term will lead to lower levels of MGP, which in turn will make those tissues significantly more vulnerable to calcification.
So this is yet another reason to take Vitamin K along with Vitamin E when taking it in high doses. It will help to keep your blood clotting AND your calcium depositing in the right places.
- George
George,
This is a good point and I do believe in K, you can get the recommend daily allowance from a cup of broccoli, kale, turnip greens and Olive oil and canola oil are rich in K.....I put some Olive oil on broccoli for a snack....any of the dark leafy green vegtables are full of K and I take my Isomer E with Olive oil for it absorbs with only fat...they are both fat soluble so your don't want to over dose with them, like ginseng when they are retained in the fat I cycle off for a while, even E..... I read on one forum that this guy was taking huge amounts of vit A which is toxic...more is not better, most people are better off with one multi and a good diet plan...
Someone reads that arginine is good and starts taking it by the handfulls, this is not good for you...but a complex and read the instructions and follow it... don't over lap... they have green supplements and now with fruit also with a multi mixed in....if you can't cook or don't eat healthy and don't want to buy a juicer, then take the greens, one serving is like eating six servings of green veggies or salads....they give you energy too.... don't go out and buy vitamin K and start popping them.... take you E with a big serving of broccoli or kale and Olive oil....or a green drink supplement.... you can get the greens in tablet form also, great for energy....and fiber...you can live off of them, they have plant protein...
Rico
I am increasingly convinced of the potential value of exercise for those of us with Peyronies. My strong speculation is that significantly intensive exercise has the potential to unleash a storm of healing nitric oxide on the vascular system and the other tissues of the body. Although there has been little study in this area due to the difficulty in directly measuring NO activity, there is this study which indirectly touches on the issue:
Total nitrogen oxide following exercise testing reflects endothelial function and discriminates health status
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16895794&query_hl=8&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16895794&query_hl=8&itool=pubmed_docsum)
Which states in part:
QuoteThese findings suggest that plasma NO(x) following GXT discriminate cardiovascular disease status, are related to regional endothelial function, and respond favorably to exercise training.
- George
Rico,
I would agree that if you can get sufficient Vitamin K from dietary sources, that is the best way. In fact, I would suggest that perhaps one reason people might have bleeding problems OR calcification problems from Vitamin E supplementation would be from a lack of Vitamin K rich foods in their diet. I also agree that it would not be a good idea to be taking large doses of Vitamin K. Personally, I get a Vitamin D/Vitamin K supplement that has somewhere around the RDA and cut that in half and take a half of one once a day. In addition, I also try to get plenty of green vegetables as well. You also mention arginine. Actually, I resemble that remark :-[ . I have been trying the 'do it yourself' method with Arginine for a few months now, and it is 'worked' sporadically at best. It has also been causing me some weird problems. So at this point, no more Arginine until the 'engineered' formula arrives.
- George
in your opinions, would taking arginine & vitiman e at the same time a good thing?? and how much? ???
Your e needs to be taken with food.....arginine I take 1.5 - 3 grams a day, I take a complex mix with ornithine and glutamine and taurnie....it has 1.5 grams of a complex arginine per scoop, I do one scoop if I don't workout hard, two if I do....this mix I take is mixed with a blue berry blend, I think it is best to take promagrate with your arginine prior(half hour) before exercise...Before you take any supplements, read up on them on the net...bodybuilding.com has some good articles there and a forum....
Rico
DannyOcean,
www.onlinecialis.co.uk/?p=140
here is one article on gingko and pentox... I was just looking at something on pentox and saw this...I have run across this many times..
Rico
I take both, 400IU of Vitamin E and 1g of Arginine daily. I started taking the E over a year ago and haven't seen any improvement. Didn't start the Arginine until Sept.20, it hasn't done anything for me thus far. I also take 2g of Acetyl-L-Carnitine and a good multi-vitamin.
I have an appointment with Dr.Levine next month, so this regimen may change.
have any of u tried this drug yet?? ???
http://www.enzymus.com/peyronies_disease?gclid=CMqKpoaF94cCFRNwNAodoFb51w
Yup, I have been taking Neprinol. Dr. Herazy says he is hearing good things about it. I really don't know. I have been taking it for close to three months now, but I have only been taking one capsule per day, which is much less than they recommend. I got all of the physical responses they predict when I started it. They tell you that the first week you take it you will feel totally aweful which proved to be true, the second week or so they tell you that you will cough a bunch of stuff out of your lungs which also proved to be true. I missed the rest of the predicted benefits because I haven't increased my dose as suggested. But I figure if a lot of the stuff is good for you, a little bit can't hurt. Sort of the opposite of common wisdom. So whats my problem? Well, let me tell you my problem with Neprinol: however good the stuff is, and it may indeed be very good, it is more expensive than most prescription medication when taken as directed. I am also not to impressed with the vendor (the stuff is basically put together in India and marketed by a US vendor), but I am impressed with the formula, so yeah, I take one Neprinol a day. But I think at this point I am going to do like Tim and quite all my supps for a few days just to try to let things settle out a bit. I have been having some weird problems for some time now and I am kind of wanting to see if they might be due to something I'm taking, kind of time for a fresh start. My Peyronies problem is very much under control and has been gradually improving for some time. We'll see what happens when I drop the supps for a few days.
- George
Thanks for the link Rico...although I'd like to see something that has a little more credibility behind it. Perhaps a scientific journal or study. I guess if I understood why Gingko and Pentox didn't mix I would stop the Gingko but I don't understand why. I think it'll take either that or some authoritative reasoning for me to drop it.
DannyOcean,
http://www.solumedia.com/ginkgobiloba.htm
Hope this helps...
Rico
Danny,
I agree with Rico on this, you should be careful with the Ginkgo. The platelet issue is not something to fool around with. As Rico's link suggests, you should discuss this one thoroughly with your doctor before you take any more of the ginkgo.
Wishing you the best,
- George
Rico,
I believe the protocol calls for 25mg of viagra after researching it, the idea is to increase that nitric oxide in your system. Personally before I added the viagra, the pentox alone gave me full pumped hard ons and I'm hanging bigger flaccid. When I took the viagra my penis was full like a steel pipe, I can see why the doctors are concerned that giving guys all these pills will have them thinking they are pornstars and end up reinjuring themselves. I've cut out the trazodone for now, I don't believe it is a good idea to take trazodone and viagra at the same time. Pentox seems to be the golden ring as far as increasing size and improving erections, lets hope it can dissolve that plaque or calcification as well. Rico are you on the pentox, viagra and l arginine right now or going on it? Let me know if you find a good deal on the viagra, I've heard from some who are ordering it from canada, however I thought this was illegal, although i read a thing on MSNBC that congress has passed a new prescription bill that will allow up to a 3 month supply of drugs from Canada, I don't know if this is just for medicare or what.
ComeBackid,
I haven't started the pentox/arginine/Viagra yet.... I do believe as Tim said in a post that it is probally the best combination out there for oral medicines being offer today.....I also believe what George said that the difference being from OTC supplements and herbs that it targets and more powerful delivery...
I'm having good circulation right now... woke up the last three days with some real good wood, Now is my VED helping, plus my diet and I have been exercising with lots of running in the fresh air and doing leg work....I did add new this week the ginseng, the red panax by prince of peace and I take two in the morning with gingko and my cereal and vitamins...I also take my OPC'S and before I go for my run or workouts I take my xyience(arginine blend)....and I have increased my water from 10 glasses to 12 and more juice also....I find with the increase of roadwork(running) I need more liquid...
I really feel the ginseng has play a role....I will stay on this till I see my doctor.... My thoughts will be to cycle off of this and take a more conventional approach for three months...pentox/arginine/Viagra along with the VED....I would not supplement other than opc's and multi.... the one thing about pentox is that I believe one needs to stay on this for sometime.... I'm going to start taking the Viagra at 25mg per day soon.... I don't know if one needs the three a day on pentox, Levine has you take two a day in his one post....George said also that with the combo of pentox and viagra, maybe less is better....I don't think they have the combo down yet, but are working on it, maybe it is more viagra and less pentox....I would think you would take the viagra at night and arginine during the day to get the full nox effect all day....why is viagra the choice instead of cialis is my question.....I might post a couple questions on the APDA site....
Anyway with the baby boomer on the rise, you will see drugs coming down in cost...walmart, kmart will be all going generic on everything.....this is a huge market....the drug companies will fight it, but with ED drugs, they won't be able to stop the generic, we as boomer will lobby are cost down, this will be the big issues come voting time...we will drive the cost down....you will see this in the next couple of years, it is better to keep some of the money here than going to the Canadians....
Rico
I have noted that some of the bench science on Peyronies Disease and viagra-like drugs has been done with vardenafil (levitra), and a few with (tadalafil) cialis (I always think of some old fart going "Ta-dah!!!" after sex with that generic drug name...). All seem to work in the lab.
I am not certain that it make a huge difference - there might be some small differences between which PDE is inhibited (PDE4 or PDE5). But I think for this issue, either would work. I am hoping that Lue or Cadavid-Gonzalez (sp?) would approve of cialis since I tolerate it with far fewer side effects.
A side note - the side effects of viagra are much worse with ANY alcohol in your system. Pushing fluids works wonders too. Rico is on the right track with his fluid intake.
Tim
Cialis gives me worse side effects than either of the other two. I like Levitra because food has little impact on its absorption.
Like Tim's goofy image of "Ta dah!
I always figure the manufacture that named cialis did so as code for an old girl friend; ie There is nothing that will give you an erection quite like going to "see Alice". ;)
It worked into many dumb jokes around here before the side-effect of lower back pain made me decide not to "see Alice" any more.
OK, you guys have convinced me to drop the Gingko. I'll ask the doc about that next time I'm in and let you know what, if anything, he has to say.
I wanted to re-open something I posted a while back on flaccid hanging. This is one of life's big mysteries to me. Why is it that sometimes I'm hanging nice and full and other times my unit seems to "retreat"? There seems to be some things that help (proper supplementation, hydration, rest, exercise) and some things that hurt (stress, inactivity, etc.) but at times I seems to be doing everything "right" and am not hanging full and vice versa. So I don't quite get this...is there anyone that can shed any light here?
Danny,
I am really not sure that there is a correct way that one should 'hang'. Of all the bodily features the male penis has to be the most chamelion like, taking constantly different forms depending on the degree of engorgement. In 58 years (including long before I had Peyronies), I have never been able to figure it out. To me it is most certainly not something to worry about. Its the plaques and the deformities that you need to be concerned about, not superficial things like how you 'hang'. It really has little if anything to do with your problem, its actually pretty normal. Just my thoughts, perhaps someone else can comment also or knows more about this than I do.
- George
Tim,
I don't know if you got a chance to read jagxjr post from January, he did say his Dr. Rajfer from ULCA prescribe cialis with the pentox, in one post he said 1x2.5 and in the other post he said 1x5mg per day....in the report he paste in from Gonzalez-Gadavid also listed his doctore on it Rajfer..... so it seems like six months ago they were prescribing cialis.... maybe they are just looking for night time erections...easier to control when you are taking a smaller amount and when you are sleeping....you have more experience with cialis, I have never use it....I use viagra a couple times for more of a fun time, was just curious, doctor friend of mine gave me some samples...I took 100mg once on a full stomach with wine, and got a upset stomach and a huge Italian pup tent in my pants, it wasn't a good combo to deal with...Lucky my girlfriend at the time was understanding and let me eat ice cream while she had a protein cone of her own, if you aren't moving around it not too on the upset stomach....anyway I think the 25mg at night with no booze or heavy food or exercise wouldn't bother ones stomach...
Rico
Does anyone know if Dr. Levine or Mulhall has answered the question of whether its safe to be on the l arginine/ pentox / viagra combo and still doing the 26 week protocol, I seemed to be having no problems doing this with the l arginine and pentox, now that I've added viagra I want to make sure its safe.
ComeBackid
I've had no problem pumping while on Viagra and I've been doing a while. I really don't notice a difference in the pump either way (Yah, no greater puplitude LOL).
As far as the "hanging". There are normal variations in the flaccid size of the penis. However, a combination of size loss and plaque cause what has been called on this forum (credit to wantitstr8) the "turtle effect". Imagine a frightened turtles head tucking into its shell.
This situation is disturbing and uncomfortable. It prompted me to use a traction device, which helped. Now I am taking the Peyronies Disease drug trinity, do not use traction, pump-up daily and the turtle effect is gone. There is some normal variation in flaccid size but, it seems more inside the normal limits.
Of all the bad stuff associated with Peyronies Disease, the turtle effect was one of the most distressing for me.
Has anyone seen the "Super Viagra" Mardi Gras beads? You can bet I'll throw some this
year. Last year I gave my uro and his nurse "Cajun Viagra" (written on oysters) beads. They were hysterical.
As we all know, stress or cold stress can make for a "turtle effect". Now, we all know that there are "showers" and "growers" when it comes to flaccid versus erect penis size (and a few who do both... sigh).
Flaccid length and "hang" may mean nothing when it comes to Peyronies Disease or normal penile function. However, just a personal observation. There has always been a very close correlation between an uptight "turtle" effect and activity of my Peyronie's Disease. I know that I can feel it when something is worsening - and it may be that this is stressful to me, and the stress-related release of adrenal hormones (like adrenalin) cause the turtle effect. But I have always had a very strong intuitive sense that it was "worsening" while it was "turtling", and have - for years - dealt with that by tugging, heating, masturbating, relaxing - doing anything I could to get it to be different (I noted that the relaxed state after an orgasm would leave me hanging loose for a while).
Now, I will say this too - the fear of worsening and the relating that to the hang, and the attendant behaviors I have worked out to deal with that have not always been in my favor, so to speak. One reason that I like the VED is that it allows me to not sexualize all the moments of my life - to deal with this in a non-sexual way. That has been to the good for my relationships! I know that we are using the VED for other reasons, but one advantage for me is the hang lasts a bit longer, and the worrying is lessened; I think that the stretching with the VED will prevent accumulated deviations from occuring, and am lesw worried about my "hang time" now.
Tim
Can some of the guys on here who doctor prescribe the pentox/viagra/pentox ask there doctor if you wanted to use cialis or levtria what dose should you take....thanks..
Rico
Rico,
I think you will find nothing on trazodone and Peyronies Disease. I first brought this topic to this forum on a tip someone shared with me on a now defunct forum. Post prostate surgery but before Peyronies Disease, Dr. Mulhall stressed the importance of 3 erections per week of 40 to 90 minutes to regain nerve growth and maintain heath of the penis. To accomplish this he prescribed bimix injections. When I got Peyronies Disease (evidence indicates it was caused by the injections), I refused to inject any more even though he wanted me to continue. As I discussed this with a Peyronies Disease patient in private on another forum, he told me of his encounter with trazodone as a sleep aid and increased night-time erections. We discussed it eliminating the need for injections. I discussed this with my family physician and he prescribed it. It was a resounding success from the first tiny dose. (consider that at the time I had 100% ED and even a 100 mg Viagra would have little to no impact on me. It was the first erection without bimix injections in 12 months. I reported on it and others tried it with similar experiences.
I stopped trazodone for 2 weeks when I started ginseng (white Korean) but got little or no NTE from the ginseng so i am going to at least take a trazodone 3 - 4 times a week and wait for 30 days to see if the ginseng kicks in. If not, I will try Korean red ginseng if i can find an source that is independently tested for potency and purity.
I do not promote trazodone as a Peyronies Disease treatment but one thing I know. It reliably delivers NTE to most men if taken at very minimal doses. Whatever benefit NTE deliver, it promotes them. It is literally as cheap as dirt, and is the best kept secret around.
Hawk,
I have doing Prince of Peace red ginseng that I bought at GNC, Liam had mention it and I looked into the company, they are out of San Fransisco... I do believe GNC has one of the better quality controls on there supplements and suppliers...The Asian market likes this product also, the roots are six years old and heat dried...I have had good NTE with it, I'm also taking ginkgo with it....
My question on the trazdone is do you get any side effects from it..hang over feeling ect... I have thought about this for a sleep aid and the benefits of the erections myself...
Levitra seems like a good ED drug to me also..and so does cialis....the more I read on them and now that they have been around for eight years I feel pretty comfortable with them and think they will get better and will lead to the peyronies puzzle....
Trazdone is listed in reports for ED...I find it interesting and like I said as a sleep aid for guys with stress in the being of this is something to think about, although it might be too much with another ED drug....
Have you ever talked to this jagxjr Hawk? I sent him a email, no answer?
Rico....
It is likely that I take more supplements than anyone on this forum. I did so before Peyronies Disease as part of adjunct treatment for aggressive prostate cancer that I was told had a 50% chance of returning. Much of it is based on PhD's in nutrition, naturopathic medicine, and MDs from Cancer Treatment Centers of America. For decades, as a body builder, I studied the most sound information I could find on supplements. I suspect that IF we knew everything yet to be discovered, that we could prevent and cure virtually all diseases if we only knew every fact about nutrition and knew what was going on in our bodies and when it was occurring. When is that first cell getting ready to mutate into cancer, when is that trigger getting ready to produce scar tissue or other auto-immune response. The problem is that the scientific community collectively has not even scratched the surface on either of these topics so we have a few facts with 99.9% of the picture hidden. There are hundreds if not thousands of nutrients that have yet to even be identified. New ones are isolated yearly with little understanding of their effect or their interaction within a complex body. We know NOTHING of their role as it relates to interaction with other nutrients. Why do smokers get increased rates of cancer if given the antioxidant beta carotene? Why does milk kill the benefits of dark chocolate? How and when may arginine be either beneficial or detrimental to Peyronies Disease. Does vitamin C protect cancer cells along with normal cells, or does it enhance chemo and radiation therapy. The list is 5 miles long before we even discuss the impact of timing or the interaction of one supplement with another. Add the complexity of individual chemistry. Why does Tim get fewer side effects from Cialis when Cialis gives me killer back aches and levitra leaves me free of known side effects? We worry that Viagra may not be evenly distributed in a pill but seldom question how an MD arrived at the recommended dose that is the same for Peyronies Disease patients whether they are a 265 lb man with total ED or a 145 lb man without ED. They both get prescribed 25 mg per nite. Would 15 or 35 mg be better ???
Next, let's add the fact that supplement manufacturers do not need to register their products with FDA nor get FDA approval before producing or selling supplements. Manufacturers must only make sure that product label information is truthful and not misleading (in theory). FDA's post-marketing responsibilities include monitoring safety, e.g. voluntary dietary supplement adverse event reporting. The Federal Trade Commission regulates dietary supplement advertising. With these loose controls and thousands of products hitting the market with new names yearly, independent labs find that many supplements have less than 1/10 of the active ingredient that is advertised on the label. Many have heavy metal contamination or other ingredients including prescription drugs mixed in. While this is the minority, our belief that we are taking the same supplement dosage as another is often based more on faith than knowledge. Often people here say I "believe in arginine" or whatever. Or I believe you should cycle off of supplements. Those statements of belief (faith) rather than knowledge (I think), may be more appropriate than we wish they were.
I hope none of us ever conclude that we have nutrition figured out and that we remind ourselves and others that visit here that we are often panning for gold in some random local creek. We hope we just might make that lucky find instead of the equally likely possibility that we could fall in and drown.
I guess there were two reasons why I asked about hanging. The first was that it seems like being "fuller" more of the time would probably help to contribute to healing of Peyronies Disease. So anything that we could do to encourage this would be a good thing right? The other thing is that I've definitely noticed that I haven't hung as well since Peyronies Disease. I do notice the turtle effect from time to time (usually when I'm running or working out which actually seems counter-intuitive). Given that the turtle effect seems to be related to Peyronies Disease it would seem that anything that would move in the other direction would be beneficial. I'm definitely more of a grower than a shower but I'm hoping to turn into the latter as well if that will help with healing this Peyronies Disease...and also am jealous of all y'all on the VED as that definitely seems like it would help me...
I also wanted to ask about one supplement that I haven't seen discussed here much if at all...ZMA. Based on some stuff that I've read (here (http://en.wikipedia.org/wiki/ZMA_%28supplement%29) and here (http://www.ajcn.org/cgi/content/full/72/2/585S)) it seems like ZMA might be helpful supplement for people with Peyronies Disease. I guess I'm still a little unclear as to what ZMA would give you that a good multi-vitamin wouldn't but given that a lot of bodybuilders use ZMA I thought it might be worth exploring. Thoughts?
Just thought i'd let ya all know how it's been working for me..I've been on trazadone now for about 2 to 3 months for my stomach and intestinal pain caused by a bad parasite infection..I don't think it has done much for me in the way of night time erections, a little , but not a lot. Some times i do notice that i hang fuller, i like that...But it does make me sleep more,,i don't care for the dreaming side effects and when i wake up in the morning i'm really foggy for a few minutes until i get my shower....
I'm still not sure if it has really helped a lot with my pain yet, i'm still trying to figure it out...I was taking 25mg to begin with and my pain got worse so my doc up'd my dose to 50mg once a day at bedtime for 2 weeks and it didn't get any better so i dropped it back down....
This i do know, it will make ya sleep a lot better and it is as cheap as dirt like Hawk says,,,About 4.50 a month for 30 pills of 50mg, which you can cut in half, i buy mine at walmart....ie; i'm not promoting walmart, i can't stand walmart, it's just close and easy for now.....Also, because of my age i have cut my dosage down to 25mg of viagra ,,,i cut a 100mg into 4's,,,and this i have found dosen't hurt as much when erect as say a 50 or a 100..if i take a higher dose it makes my penis too hard and then my old plaque area will hurt a lot more.....Anyway's , these are my thoughts, take care and keep up the good work Hawk....I'm glad i can come here and read..............kimo
Rico,
In answer to your question I have no side effects from 25 mg trazodone. I suspect those that are groggy for several minutes in the morning are not getting 7-8 hours sleep. If I know I will only get 5 hours sleep, I don't take it.
I am curious that you have the impression that cycling off supplements cleanses your liver. Supplements are products found in food that we consume daily. Many by products of food consumption are not even processed by the liver but by pancreatic enzymes, intestine, kidneys, etc. Exactly what do you take that is contaminating your liver? How do you know how long it takes to decontaminate your liver, and how do you know when it is contaminated again? Or is this more of a ritual or schedule that you just like to follow without any real evidence of how it directly impacts your liver? We all have such routines, I was just thinking that since you mentioned it you may have some solid information to share. Do you also fast and eliminate food consumption during these periods?
PS: one last point I want to drive in the ground. I did not say we don't know everything. I said that the entire collective scientific community has no clue on 99 % of the picture. That is much closer to saying that it is my view that we know next to nothing compared to the body of facts that remain to be understood.
I believe cycling off nutrients and depleting nutrients from your system is bad.
I'm very new to this forum, but very glad I found it! I've recently been diagnosed with Peyronie's Disease, but have had a curvature for over two years now. I originally thought it was because I had taken some Viagra to enhance sex and that I had traumatized my penis from engorging it with too much blood. Now I'm not sure if that's what happened to my once above average, straight, beautiful penis. Anyway, now I have pain "everytime" I have an erection. I can still perform sexually, but not without discomfort...I'm also feeling a new dent in my shaft and I'm afraid of what the future holds. I've recently been doing some research about my condition. My urologist, just said "take some ibuprofen" to decrease my painful erections.... I am not satisfied with his assistance or his bedside manner...but I am hopeful that there are some "better" answers. I don't believe that my condition (like some) will correct itself.... does anyone have any information about "Aminobenzoate Potassium"...it seems to have helped some. Please feel free to reply
Mister Desperate (and a little depressed)
Mister, I too came down with peyronies after my first dose of viagra,,but i don't believe it was the viagra's fault, i know i had injured my penis long before from having rough sex..For the first time in a long time to have a good hardon with the viagra felt absolutly wonderful but it started a pain in my penis about half way back on the top and with in a few short weeks i was bent and twisted like a donut and scared and almost depressed...Your not alone, i know how you feel, but keep a positive attidude and read and listen to the good advise that Hawk and the others are giving here,it will help get you through....
I'm still bent up but not as bad and can have sex pretty good with my wife, i do have another new area of plaque and it hurts when having intercourse, i just try to not think of the pain and only on the good feeling when with my wife...I just won't let it stop me from having sex with my wife, there's always a way, use your imagination.....
take care,,,,,,,,,,,,,kimo
Mister,
Welcome! Posting members are the life of this form. It is our goal to hear from all members rather than a limited number.
Aminobenzoate Potassium is the generic form of Potaba. It is an traditional approach that has been around for a long time but has become less common due in part that newer approaches are being used and in part because its rate of effectiveness was not impressive. It requires massive numbers of pill and very often results in significant stomach upset. many men here that have been around for a long time, have tried it. If you are determined to go that route, the generic can be significanly cheaper but it would not be my first choice.
Mister
Welcome to the forum, you have come to the right place and will be helped by the information and good will you will find here. It has helped me understand my condition and given me the information to combat it. The depression will pass as you realize that you are not in this alone.
I guess I will need to sign off with my full name now.
Mister Dillon
Potaba is a disgusting supplement and will eventually upset your digestive track. At best, it claims to do is to possibly stop the progression of Peyronies Disease, not reverse it.
Try the l-arginine and some of the other supplements and meds mentioned in the forum. I would rate potaba right up there with Vit E and wearing a chicken foot around your neck ::) :)
Good Luck and thanks for posting.
Liam
No wonder that chicken foot isn't working, you're not supposed to wear it around your neck!
Wanted to re-open the discussion on these two supplements. I know they were discussed previously but I was wondering if anyone had anything new to add here. I read through all of the posts in this thread a while back and the consensus was that these could be helpful but nobody seemed to think they were essential. I'm on Pentox/Viagra/L-Arginine/ACL right now, just dropped Gingko, and wondering if there's anything else I should add to the mix.
Thoughts?
Quote from: mister on October 16, 2006, 02:28:57 PM
Anyway, now I have pain "everytime" I have an erection. I can still perform sexually, but not without discomfort...I'm also feeling a new dent in my shaft and I'm afraid of what the future holds. I've recently been doing some research about my condition. My urologist, just said "take some ibuprofen" to decrease my painful erections.... I am not satisfied with his assistance or his bedside manner...but I am hopeful that there are some "better" answers.
Mr. Desperate,
I'm not sure how much you've read here yet, but just a few months ago I also had a dent and painful erections, and one of the most helpful suggestions I got from people on this board was to immediately start taking (approximately) L-Arginine 1.5g, 2x/day and Acetyl-L-Carnitine (ALC) 1g, 2x/day, both on an empty stomach. Within just a few weeks my pain was significantly reduced. That is a good way to start, IMO.
Also it sounds like your Urologist is almost clueless (ok, that may sound harsh, but my first Urologist was, too) so do the best you can to find the most knowledgable Urologist in your area on Peyronies, and make an appointment. Ask your current Urologist who they think is the Peyronies expert in your area. Call their office and ask upfront, how many Peyronies patients does he see, is he up on the latest treatments? This will be hugely helpful in the long run. If the best advice your Uro can give is "take ibuprofen" or "try vitamin E for a year, and get back to me,"
find someone else. If even part of your scarring is in the active phase (which it sounds like it is), time is of the essense, and your best chance of stopping further progression is by acting quickly.
Also, you know they're going to recommend Vitamin E, so find the highest quality "mixed tocopherols" Vitamin E you can and start taking 1 or 2 a day. As you will read on this board, the quality of your vitamin E might just make a big difference.
Anyway, welcome to the board and good luck!
My opinion:
I took a lot of quality enzymes for 3 months with no slight detectable benefit. I think they are total hype for Peyronies Disease and have no more ability to impact a scar on your tunica than they have to remove a scar from your arm.
You are on a solid program. I say give it time to work and do not interfere with it by mixing unknowns into the soup.
If you do not get good solid erections, (or maybe even if you do) you might consider a VED.
I just want to add my two bits worth on this issue regarding 'cycling' on and off of supplements/herbs. Like Hawk, I am a little skeptical of Rico's concept of 'cleansing the liver' just as I am of such things as 'colon cleansing'. I really believe that the body is made to process food and nutrients and is perfectly capable of 'cleansing' itself as necessary without having to have a change in diet in order to accomplish that. Having said that, I think that when it comes to supplements/herbs, we need to remember that there is a drug aspect to them. The supplements that really engage the body and produce results are also capable of producing unwanted side effects. They are also capable, when used in sufficient strengths, to deplete the body of other nutrients. So I am realizing that there does come a time when it is necessary to stop taking a certain supplement or perhaps all supplements and to get a fresh look at the total picture. In my case, I have currently stopped all of my supplements for a few weeks because 1) I want to see how my body is currently responding to my prescription meds (as a baseline) in the absence of the supplements, 2) I want to get a complete blood panel done (as a baseline) without risking having it skewed by one or more supplements, 3) I want to see if some of the conditions which have been essentially cured by the supplements return once I am off of them or if they are 'perminently' cured, and 4) I want to see if a new problem that I have recently encountered is being instigated or agrevated by any one supplement or any combination of supplements I am taking. Once all of this has been accomplished I am looking forward to continuing some or all of the supplements I was previously taking. But I do feel the need from time to time to stand back, reevaluate things, and get a fresh start.
- George
Here is just one article on supplements and if you should cycle....there are many more and they all say the same thing, cycle!!!
www.athleticadvisor.com put supplements in search on this site....
Rico
Hawk
You have summed up the health/fitness/diet aspect nicely!
I don't want to discourage others from improving their overall health, but since acquiring Peyronies Disease some 24 years ago, I have kept to a healthy high fibre diet with lots of fruit and veg, I have kept physically very fit - regular circuit training and Ju-Jitsu. Also, I have never smoked, and I drink very little alcohol (after being told at school: 'drink'll shrinkle your winkle'). Sadly, the net result has been a gradual worsening of Peyronies Disease.
However, improving your overall health is a good thing to focus on and it takes your mind off Peyronies Disease!
Percival
I just want to express my general agreement with Hawk. I think that dealing with smoking and drinking should be a first step, followed by significant diet changes. But this thread IS dedicated to (as I understand) non-prescription things we might consume that might have special value in dealing with Peyronies. It is a place where we can share those substances we have come across that we either got a great deal of percieved benefit from or that we have uncovered promising research that might indicate it to be helpful. From there we can jointly tear that substance apart and discuss its potential critically in a manner that might produce some fairly interesting and useful content for each other and for onlookers. So while the detour into nutrition was an interesting diversion, it is probably indeed time to remember what we are here for and get back to the business at hand. And perhaps there is a need for a general health and nutrition thread where the value of these things can indeed be pointed out to the great unwashed masses that have partied themselves into a stupor and survived on McDonalds and Colonol Sanders for as long as they can remember and now wonder why the have Peyronies Disease.
I have improved my diet and quit smoking. I still drinks a bit (ala BoJangles) for medicinal purposes (Red, Red, Wi-i-i-i-ine). Maybe I will live long enough for a cure for Peyronies Disease to be found.
I am not sure whether a healthy diet and exercise has any bearing on the physical aspects of Peyronies Disease, but it just might help mentally. I run regularly and play around on a weight machine, and at age 52, it is becoming harder to keep the middle in check. When I got diagnosed w/ Peyronies Disease, all I wanted to do was come home, plop down in a chair and drink myself into a stupor. But then thinking about trying to work off all that beer made me change my mind. I came home and ran some of the anger off. Just my 2 cents.
Great Stuff Rico- you sure know your SHi_
Hopeful
Quote from: Rico on October 17, 2006, 12:10:40 PM
DannyOcean,
I agree with Hawk....I wouldn't add anything to your prescriptson....I just read a article on Priapism...several cases of men coming in with erections that had lasted over four hours, one man was two days, the drugs of choice for them...yes you got it....pentox/arginine/viagra at the same dose they are prescribing to you....the results where no typical scarring as in most cases of Priapism.....
I would have to argue that excercise theoretically should be good for Peyronies. The reason is that exercise tends to mobilize nitric oxide metabolism in the body which is exactly what you are doing with Pentox/Viagra/Arginine. So I would argue that exercise would only potentiate the effect of Pentox/Viagra/Arginine by stimulating nitric oxide production throughout the body.
- George
I have seen several references to arginine on this forum, but not sure exactly what benefits it might have w/ Peyronies disease. How much is the accepted daily amount.
crs
csup,
Arginine is a precursor of nitric oxide, which causes blood vessel relaxation(vasodilation). It is what the ED drugs like Viagra are trying to do, now of course they are much more effective with there potency....but by taking arginine several times Day you are keeping more circulation in your unit....blood flow...
You can read more about this on the forum, I suggest as far as how much you take to go to the health food store and buy a good blend of arginine and take the dose the label suggest and adjust to your needs...
GNC ISOMER E..... 100% more antioxidant capacity than natural vitamine E... if you are looking for a full spectrum E , this is it.... not only does this have the d-gamma in the dose George and Tim recommend but it has the Toco-Rich tm....read the label..this is the state of the art Vitamin E...it is a little pricey, but you get what you pay for and I try to buy it the first week of the month with the discount and the large bottle of 90 capsules.....
Rico
Just an added note to Rico's comment. If you go to http://www.bodybuilding.com (http://www.bodybuilding.com) , they have some really great resources there in terms of Arginine and its effects. In terms of Peyronies, nitric oxide has been shown to be capable of actually attacking and breaking up plaques. It is really essential in nourishing tissues in addition to its positive effects on blood flow. But be sure to get a professional formulation of Arginine designed to mobilize nitric oxide metabolism. The bodybuilding supplement industry has done a great deal of research in this area and they are the people to look to for the best products. But don't just go out and buy plain Arginine, it is the scientifically formulation complex blends that really do the job.
- George
George,
Whats is your definition of "professional formulation," of arginine? What are the "scientifically formulation complex blends?" Do you have any scientific evidence or literature to back up that one type of arginine is better than another? Also I"m not so sure nitric oxide has been shown to be capable of actually attacking and breaking up plaques, I thought it was more to act as an anti-fibrotic, but if you have any information that proves nitric oxide can do this feel free to post.
Also I wanted to point out to Rico and maybe others that are confused about why viagra is added to the protocol from Dr. Levine. Viagra is not added to work with pentox in reducing the plaque, its taken to encourage nightime erections, the pentox study that shows pentox can help reduce plaque and curvature was done with pentox only, not viagra or arginine. The L Arginine of course is added because its a precursor to nitric oxide, while the viagra will give erections, and Dr. Levine believes will act as an anti-fibrotic.
I found 2 cents worth to throw in on several past comments.
First, I share Pudders curiosity on his specific questions on arginine.
Why take Viagra? Next, I have no clue what specifically Dr. Levine thinks Viagra will do, but I have doubts that he thinks it will increase night time erections or that erections are his stated goal for adding Viagra to the mix. If that were the issue then he is way off track because clearly trazodone kicks the butt of any 25 mg dose of Viagra for 1/100th of the cost. I was prescribed 25 mg of nightly Viagra by Dr. Mulhall and specifically told it was NOT for erections of any type. That was pre-Peyronie's, but I was told it would help maintain healthy tissue and encourage nerve regeneration but that it was not expected or intended to give me any erections. Erections were taken care of through an entirely different route.
We had this same forum conversation before and Tim specifically stated that night-time erections were not the goal so trazodone did not fill the bill. Inhibiting PDE5 levels independent of any erections was the goal.
Body building - I have had some close casual contact with body building and with power lifting. I was friends with a state champion body builder, have read more than a dozen books by well known figures, hundreds of magazines, and had direct on-phone consultations with a well known body builder. There is no more corrupt industry permeated with total unadulterated BS and hype than the body building industry. None ! They have polished deceptive advertising to a fine art and taken it to levels enzite marketers have not yet dreamed of. I do not think that means no one in the industry ever has a grain of useful information but it does mean that being associated with the body building industry should throw up a red flag of warning, not a stamp of reliability. That "industry" has fine tuned the art of throwing technical terms, chemical processes, carefully veiled claims into high priced slick multipage ads that pose as objective articles. They are about one thing, sucking the squandered dollars from the last BS hype to a better must-have new break through BS hype. Simply put, out BS'ing their competitors BS.
If this were the place I could deluge this forum with pages of revealing examples.
ComeBackid, this whole thing revolves around ways to mobilize nitric oxide. It is the nitric oxide that actually does the work. The problem is that the plaque itself contains abnormally large amounts of both TGF-beta and PDE-5. TGF-beta causes localized over expression of Arginase which subsequently blocks nitric oxide synthesis from Arginine from food sources. That is why we want to block Arginase or TGF-beta to stop the Arginase in the first place. Pentox does just that, thus the end result of Pentox administration is to open the door for the Arginine channel. Supplying the Arginine is then the logical next step. But the problem doesn't end there. PDE-5 also blocks the production of nitric oxide in the plaque. So we need to also inhibit PDE-5. This is done with the Viagra. Thus, the three in concert open the door to production of nitric oxide within the vicinity of the plaque and it is the nitric oxide itself that actually enables the body to break down the plaque and remodel it into normal tissue. For this purpose (the Pentox/Viagra/Arginine treatment), I would ask your doctor as to exactly what form of Arginase works best. For anyone else NOT TAKING PENTOX, I would advise to check the information on bodybuilding.com. For those on Pentox, the Pentox and Viagra are ALREADY opening the door for the Arginine. But for those not taking Pentox, Arginine alone may be of little use. The new formulas available from bodybuilding;.com come with Arginase blockers, which, while not as effective as Pentox, perform the same function in opening the door to Arginine. These professional formulations along with Horny Goat Weed would approximate the Pentox/Viagra/Arginine protocol on a less potent level.
- George
It sounds like most of you out there have done a whole heck of a lot of research on the chemical side of things associated w/ Peyronies Disease. I am going to seek out a new Uro this week that will have some (or alot) of experience w/ this disease. Can anyone tell me what I should be asking him about as far as oral meds he can prescribe, or OTC meds? Is pentox by prescription? I thought viagra still was, but not sure.
crs
ComeBackid, we have gone around (and around) before about the role of Viagra in helping to deal with Peyronies Disease.
It is a PDE5 inhibitor and thus is important in decreasing collagen formation through the TGF-Beta pathways. Increasing arginine and NO levels (with Viagra) leads to less inflammatory pressures to form collagen/fibrin/placque, and to allow for remodeling.
If Levine uses it for night time erections fine and dandy, but it is not why PDE5 drugs have been used and recommended by Lue and Gonzalez-Cadavid (or is it Cadavid-Gonzalez?).
Tim
Hawk,
To me it is unclear as well why Dr. Levine thinks viagra will improve nightime erections, and if he thinks this is the only thing it will do. All I know is that after taking viagra at nightime now right before bed, I'm waking up with hard ons a lot, and am getting a lot of nightime erections. Trazodone also provided me with nightime erections. Hawk I think most doctors don't know about the benefits of trazodone, have we heard Dr. Mulhall or Dr. Levine mention it once? I think your ahead of the game with the trazodone, the thing is I'm not sure if trazodone is a pde- 5 inhibitor like viagra, so viagra can do the double whammy job of giving nightime erections and decreasing collagen formation through tgf-beta pathways as tim points out. The only problem is viagra is so expensive... oh canadaaaaaaaaaaaaaa
ComeBackid
Forum members:
Can someone help me put Trazdone in perspective as far as the dose of 25mg at night time for erections....I understand the reasoning for the health benefit of night time erections, but from the stand point of interaction of the drug with say pde5 inhibitors such as Viagra.....would this drug resemble more of a pentox or Viagra or neither.......I have found pentox and trazdone listed with ED drugs.....what causes the erections with trazdone?
Rico
Forum members:
I would like to know who on the forum is currently on pentox/viagra/arginine and if you were prescribe the formula or order yourself... conditions, if you are using VED exercises also, what have been your results...
Tim I know you were going to see a Urologist and start on pentox and see if you could get the viagra script filled.....I was wondering if you did this...
This combo seems the most promising alone with VED, but not really hearing or reading much on it, other than the posting here....
Rico
Trazodone is NOT a PDE5 inhibitor. Unless otherwise established, this would mean that it may provide healthy oxeygenation of tissue through night-time erections (NTE) but that it would not replace Viagra, and there is no evidence it would inhibit TGF a suspected component in formation of Peyronie's plaque (scar tissue).
Trazodone should not be taken in the same 24 hr period as Viagra.
I was reading on a site, primarily for Vitamin E, it mention E and peryonies and said that Fexofenadine is used in the early stages of peyronies...this was written in 2001.... I believe this is used for allergy relief?
Anyone here of this before?
Thanks Hawk, I figure you would know the answer on trazdone...
Rico
I was reading on Wikipedia last night about Nitric Oxide and Minoxidil, and how this drug (Minoxidil) is a vasodilator, and is a nitric oxide agonist. It sounds like it links to the nitric oxide in the body. Has anyone ever heard of, or tried using this drug to aid in the release of NO in the plaque area(s) of Peyronies Disease? What about the 5% topical hair formula (Rogain) applied to the penis itself. (Hopefully it wouldn't aid in hair growth in this location).
crs
Csup,
Minoxidil has a high abosption rate through the skin but as you indicated, Minoxidil is an Nitric Oxide (NO) antagonist which has the opposite effect of arginine which functions as an NO donor. If anything, Minoxidil would likely kill an erection and blood flow. In fact, there are reports of increased incidence of Peyronie's among users of Minoxidil. I am not sure if this connection between Minoxidil use and increased incidence of Peyronies Disease is documented but in any case, the last thing you want is something that is an antagonist of NO.
There is a release of histamine in the early stages of peyronie's (when nodules appear) & when it reactivates at any later time. That release is only one of a cascade of events that take place. Fexofenadine blocks the histamine-1 receptor on tissues. It is not the only anti-histamine to do this but may be more effective for peyronie's than benadryl or claritin. Histamine triggers inflammatory mediators. A good research paper on this can be found at: http://www.aaaai.org/aadmc/ate/antihistamine.html Some studies suggest that as little as 30mg - 40mg of allegra can be just as effective as higher doses. This has also been my personal experience. In 04 I had hernia surgery w/mesh implant stapled to outside of peritoneum. My peyronie's reacatived after surgery in significant way. That mesh eventually failed and in 06 I had to repeat this surgery in a more invasive way; mesh stapled to inside of peritoneum. My peyronie's did not reactivate after this surgery. In the week prior to surgery (but not within 48 hours of the procedure) I took 30mg of allegra daily for 2 days. After returning home the same day I took 30mg a day for 7 days. I stopped then because my testicles were becoming sensitive & thought there might be a connection. That sensitivity went away 3 days later. Is Allegra the reason my peyronie's did not reactivate this time? I can't be sure because of all the complexities involved.To be sure would require a large number of men with the same experience. I have seen no evidence suggesting that Allegra would help when peyronie's is not in an active stage.
Hawk,
The Wikipedia said that Minoxidil was a Nitric Oxide agonist, not antagonist. On reading the definition of agonist, I took it to mean that this was a help to NO, not something that would attack it. I am very new to this disease, and definitely have a lot to learn about it. I don't even really know the correct pronounciation of the da_n word yet. Is it pay-rone-ees as one site suggested? Where is the accent placed? Thanks.
crs
Topical minoxidil in the treatment of male erectile dysfunction:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8158763&dopt=Abstract
And note this conclusion to an article on ED:
QuoteTopical ointments containing such ingredients as prostaglandin E, minoxidil, or herbs are also used. But none of the experts interviewed thought they compared well to other therapies.
http://www.umdnj.edu/umcweb/marketing_and_communications/publications/umdnj_magazine/hstate/win97/win97up.html
Drugs that may cause impotence (note that minoxidil is on the list):
http://www.umm.edu/ency/article/004024.htm
There are drugs out there like minoxidil, that definately stimulate nitric oxide (it was orginally developed as an anti-hypertensive drug), that are very tempting to apply to Peyronies and ED. But one has to remember that a given drug may on the one hand stimulate nitric oxide, and on the other hand also take back what it has given and more with other pharmacological effects. So while on the surface, minoxidil looks attractive, one needs to dig into the actual research to get a picture of what its actual value might be. And the actual investigation on the use of minoxidil for Peyronies is NOT encouraging. It has apparently helped A FEW people in the short term with NO RECORD of long term follow up. We also know it has been tested on quite a few people and has not been helpful to most of them. That is not a good indication for its use in my opinion.
Other treatments like the Pentox protocol are much more promising. That is the direction I would look to if I were afficted with Peyronies that is severe and debilitatiing. Otherwise, I would be looking to substances with a consistent research track record for attacking TGF-beta, Arginase, PDE-5, etc. without carrying any extra baggage of potential nasty side effects.
Accent is on the middle syllable.
puh RONE nees (in English)
Sorry for the misread and my misspeak. I am still in a rush but want to say that I have read that minoxidil applied directly to an erection will cause loss of that erection. It could be misinformation or the fact that minoxidil as an agonist binds to the NO receptor but does not mimic the action of NO and blocks NO as a result. I have also read on websites and heard several anecdotal accounts on forums of Peyronies Disease development after use of minoxidil. Though it could be the age/group relationship, it seems there may be more to it than that.
Liam,
I am sorry to correct you, but I don't think Francois Gigot de la Peyronie would appreciate your pronunciation of his name. Names are not normally Anglicized; hence, the proper pronunciation is as follows:
pay ro NEEZ
I may not know nearly as much as the rest of you guys about supplements, VED's, etc. but I do know my French, even if my spoken French is with a heavy Southern accent...
Scott
The interesting thing is that something could have this much of an impact on our lives, that we dedicate so much attention to it, and yet actually say it so seldom.
All I know is that ever since I "contracted" this mess about 3 weeks ago, I have said that word over and over in my head, maybe 1000 times by now. It is hard to think of anything else during the day, or night for that matter. Now to bring this post back on target, I saw something about Bromelain as a possibility to help fight Peyronies Disease. Anything good on this that anyone knows about?
crs
csup,
I understand the feeling you are having, the first few months of this mess can be very trying....it can shake the strongest man...I can say for myself that I have better days now...nature and prayer has help along with exercise and being able to come to the forum and talk with my brothers here, you are not alone and our prayers are with you..
Bromelain comes from pineapple stems and is use for inflammation(bruising by some boxing trainers) after a fight...sort of like taking a Epsom salt bath, it is also like other enzymes thought to fight plaque, the type that you would get in your veins.....inflammation is always good to keep under control, but I would find it hard press to believe this could remove the plaque in your unit...I used it in the beginning along with some ofther enzymes for a couple of weeks...more research brought me to believe I could be spending my money and efforts in other supplements....now anytime someone is improving there blood flow, from removing the plaque in your blood this could be good, but this to me is for someone with a underlying health issue and once again over all health in my opinion can't hurt one in healing your peyronies.....I don't like to take too many supplements at once, so I try to focus on what I believe will work together, and these focus on circulation, getting as much oxygen to my unit...I have found for me ginkgo and red Korean ginseng along with opc's and Isomer E are giving me this...diet of anti inflammation....the dmso I use now I believe is more for oxygen also, dmso is a vacillator.
I will also say from what I know now, I would think hard about taking the pentox/arginine/Viagra as soon as possible, this is easy to do, thought out and used by the cutting edge urologist on peyronies today....and when I was stable I would then move onto the VED treatment....some of us have concerns to think about....high blood pressure and many other medical conditions one has to take in consideration, even something as a hot Epsom bath might not work for someone with high blood pressure and one has to know how other drugs might interact with each other.....also if you are taking the pentox/arginine/Viagra then all you need to do is take a multi vitamin and eat right and exercise and maybe work on the mental aspect of this disease.....I have spent hundreds of hours on research on supplements and foods for inflammation, this can take more time than one wants to do, and also confusing at times....
Remember the first six months is the time to act, stop your inflammation in your body now, this includes from looking at dental health ect...then look at yourself and say what works for me, George, Tim, Liam, Hawk ect...all have much knowledge and understand there body and there health issues....sit down and evaluate your life style, health condition and make a plan that you can stick with for the next three months, focus on inflammation and if putting a supplement plan together and sticking to it, which is not easy, then maybe the pentox/arginine/Viagra would be for you, do you have the financial ability also to do this? Most supplements and herbs take time also, so by going for one to another every other week won't do you much good, especially enzymes....I do feel like I'm moving forward, the ved is showing some results and the ginkgo which I just started several weeks now is helping....I will go back to my urologist soon for a six month check up and explore the pentox/arginine/Viagra or maybe just the trazdone.... I have in the past found some supplements to work well and then wear off, so I want to see if the ginkgo keeps working for me....
I know this isn't the case for all the brothers of peyronies, but I do believe a large number get better or become stable...so time in this case is on your side and it does heal....most people I believe if they become cured, do not spend there time on the internet on a peyronies board, so take with a pinch of salt when you read a depressing post also...try to find your plan that will once again fit your budget and needs....The Old Man and Angus are true pioneers in the VED and Saints as far as helping you with the protocol...George knows his supplements, Tim is a Doctor, ComeBackid is always looking and working for peyronies awareness...you have a large source of knowledge here to draw form... I think my first month I just read every post and didn't post...when I ordered my VED I read the VED thread several times and had pm's with Old Man and Angus which was great help, listening to Mick's success and now Mr. Dillion...this will give you hope also...you are at a good spot here and are prayers and hope are with you..
Rico
http://www.msnbc.msn.com/id/15387493/wid/11915773?GT1=8618
Rico,
Thanks so much for your excellent and thought provoking post. In the short time I have been a member here, I have come to realize that many of you have unfortunately been involved with this disease for a long time. The good that comes from this is all the research and knowledge that is available on this site to the newbees such as myself. We have the benefit of perhaps being able to treat this malady with treatments that are actually working and not just website hype.
I am currently looking for a new Uro that will have some current case study on Peyronies Disease, and hopefully consider the non traditional treatments. Although after reading the recent post by ComeBackid 135, I am not sure about the herbal approach to things anymore. I also have an enlarged prostate, and am taking a trial 30 supply of Uroxatral. Not sure if this is working totally yet. Only been on it 1.5 weeks. I am also lucky in that I have good insurance, and any Dr. prescribed drug program will not cause me to have to sell my house. Maybe just my first born. LOL.
Currently I seem to have one nodule that runs thru from top to bottom on my penis near the base. This nodule seems to be between the Corpus Cavernosum. This is causing an indent on the bottom during an erection. I can also bend the shaft fairly easily at this point while erect. I don't have any curvature at this time, and I am very thankful for that. I guess what scares me the most is reading about some of you that have very bad curvature, and not knowing if mine will progress to this state. I actually dread getting an erection wondering if the next one will show a worse progression. Ok, enough of that. I am very lucky, I have fairly good health otherwise, and am far better off than a lot of people in the world. I thank all of you for your thoughts and prayers, as my thoughts and prayers are with all of you also. As they say: One Day at a Time.
crs
When it comes to evaluating supplements I believe it is important to 1) go to google and google the supplement in question followed by "site:.gov", and two, repeat followed by "site:.edu". The resulting hits will give you some idea of what sort of existing research has been done on that particular supplement. I also like to google supplements followed by "interactions" and then by "side effects" and "toxicity". I believe it is really important to get a firm grasp of how the given supplement works (or fails to work) and what, if any, might be its undesirable side effects and interactions. The last place to look for information is on the site selling the supplement. In other words, don't believe the hype.
But I will say again for the umpteenth time. If your Peyronies is really debilitating for you, the Pentox approach is probably your best shot for a cure at this point. And the doc to contact (or have your uro contact) at this point is:
http://urology.ucsf.edu/faculty/facLue.html (http://urology.ucsf.edu/faculty/facLue.html)
- George
Good link ComeBackid. It adds some balance to the topic.
With mounting evidence as to the effectiveness of the Pentox/Viagra/Arginine protocol for Peyronies, I have found it fascinating to explore what might be a potential supplement based 'analog' to that approach:
Horny Goat Weed with its standardized Icariin content would be a natural choice for a stand in for Viagra.
My choice for an Arginine analog would be Maca at this point, or perhaps better yet, a Norvaline reinforced Arginine formula. The problem with Arginine is uptake and delivery.
The really hard part has been finding a suitable drop in for Pentox. But when one looks at the characteristics and chemical attributes of Pentox, low and behold, the substance that jumps out is Theophyline, a major component of Cocoa. The two are closely related and share many pharmacological characteristics. It has been discovered recently that people who consume lots of Theophyline have a significantly reduced level of disease as compared to those who don't. I am convinced that something is cooking here, and though I have long been taking all three of these, at this point they will recieve more of my attention.
The other two areas that I will continue to work on are anti-oxidation (with Vitamins C and E), and inflamation (with Mangosteen and Fish Oil, since I am now taking thiazide for my hypertension and can no longer take aloe vera).
One area I am backing away from is the whole anti-fibrotic scene with Neprinol, Nattokinase, etc. Recent studies have indicated that antifibrotic strategies my actually backfire on the user and may actually, through some unknown pathway actually make the problem worse. So at this point, I am becoming more cautious with that approach.
But I am really quite happy with the Horny Goat Weed, Maca, Theophyline approach, and will be putting more emphasis on it going forward.
Hawk, I agree that the article ComeBackid linked tends to bring some balance to the subject of supplements. But I also think that it is more than a bit one sided in several ways. In the first place, it takes a few dramatic failures and, from that, attempts to paint a broad and rather inaccurate picture about supplements. In reality, the pubmed archives of full of studies demonstrating the effectiveness of supplements. In that regard, it is similar to articles that appear in the main stream press touting the latest 'curative breakthroughs' from the pharmaceutical industry. Then when one digs deeper, one finds that the 'discovery' in question is much more complex than what the press makes it out to be. This is something that doctors find very frustrating. This article does, essentially the same thing in reverse with supplements. And in fact, the article is not even accurate. The study on glucosamine plus chondroitin sulphate found only that these supplements were not as effective as what they are promoted to be. I read the abstract at the time and it gave a completely different picture than the resulting headlines. This article also gives the impression that finally a study has been done on glucosamine plus chondroitin, and it was a 'bust'. The fact is that one can find a multitude of conflicting studies and metastudies on glucosamine plus chondroitin that have been done over the last few years. But the story never even mentions that fact. So the press is the press and they like to write sensational stories that sell and get hits. But real life is considerably more complicated than what they make it out to be.
-George
George,
I agree with all you have said. I think the hype and inaccuracy resides on both sides. I heard ,would you believe, a study on scholarly studies that concluded their conclusions have no more than a 50% accuracy rate due to flawed procedures, or conclusions not supported by findings. I immediately wondered if this study on the accuracy of studies fell within the same 50% chance of faulty conclusions.
It is the norm for people to mistake evidence for proof, anecdotal evidence as reliable, and isolated studes as the last word, and to over simplify issues. Living in the world of legal evidence, and the world of systematic trouble-shooting of electronics, I have seen the tenacity with which people pursue the wrong course. I have found it far too common, that even those trained to follow the facts and reach conclusions get side-tracked on a regular basis.
Theophylline is a prescription drug, and has a nasty side effect of causing seizures when one gets too much on-board. I am so glad that we do not use it for asthma anymore.
Caffeine may exert some of the same effects as theo on airways (in asthma).
As for cocoa, recall that the Kuna Amerinds in central America do not get high blood pressure - and this was linked to their very high intake of cocoa.
http://www.nutraingredients-usa.com/news/ng.asp?id=21541-cocoa-consuming-population
http://facultyresearch.bwh.harvard.edu/cgi-bin/search.cgi?id=231
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16877960&itool=iconabstr&query_hl=1&itool=pubmed_docsum
Tim
Coca or "Dark Chocolate" ...it must be dark...it is full of pycnogenol, as is grape seeds and french martime pine bark...excellent for circulation... the only down side on dark chocolate is it is high in calories....but I take it in small amounts....you can buy organic and part of the funds go to saving the rain forest..it is very good..a little bitter, not much sugar.....OPC's are really something I think if research you will find are one of the better ways to increase circulation....
I'm going into my sixth week of ginkgo now....60mg twice a day and can see a difference in my hanging and blood flow, I'm also in my sixth week of VED and see results as far as thickness during flaccid state, I'm very happy with this look, this is better than peyronies, I went from a grower to a shower....next week with be the seventh week and the large cylinder, this is what I'm looking for now, will give a bench mark and I will post measurements at the end of two months in two weeks and every following two months....
Advil Pm which is new on the market has dphenhydramine... I have been using this for several days on and off....I know dphenhydramine suppose to stop scarring..... I take my last 60mg of ginkgo and it at night, makes me sleep and stops inflammation along with the dphenhydramine to hinder scarring and the ginkgo, well you wake up with some wood....
I found it interesting that my girth got bigger after using the small tube, it was a stand still after the b cylinder...the more I thought about it was that when it is in the a tube(small) the plaque is pressed up against the wall of the tube, like the Old Man says, a straight jacket, or if could imagine pushing a piece of gum or taffy against a window, it only has one way to go, out, make it thinner......if you are using to large of a tube, it doesn't press against anything...NO MOLDING...this is why when then massage the plaque away they press hard on it.....it is the small confind space that works as ones hands to press it up against the plastic or tube....even pressure....it the plaque has somewhere to go, or the surrounding tissue it won't mold to a new form, it is like a pressure molder or form molder....I have found for me to work for about 3 or 4 minutes with light pumps and then the next 3 or 4 minutes with a little more pressure and ending the last two minutes with what I feel is Maxim for me, then a minute of easy warm down, I never go over 10 minutes for myself at this time, I hope to start adding a minute per session till I work up to a 30 minute session.... you do get a feel for it....
Rico
Hawk, you know, I think that all studies are flawed in some way. Some are done better than others but there simply is no 'perfect' study. It is just to easy to review any given study and end up with more questions than answers (and at times, those questions have just as much value as the answers). I think that we have to look critically not only at the studies whose findings we disagree with, but we also have to look doubly critically at those studies whose findings we agree with. And that is not an easy thing to do. And while various 'controls' and 'standard practices' have significant value, they should not be the end in itself. There are actually some very poorly done studies that produce useful information and plenty of useful questions. Granted, that information needs to be verified in a more professionally administered followup study, but it is very easy to throw the baby out with the bathwater. And studies of supplements are inordinately vulnerable to abusive reviews in the press. If a reporter blasts a prescription drug, they open themselves to big time legal action if they don't have all their facts lined up. But when is the last time you heard of a supplement company threatening legal action against a reporter? The supplement industry is indeed well heeled, but compared to the pharmaceutical industry they are indeed paupers.
Dear Forum Members and Guest:
Like George I have also been trying to duplicate to some degree the pentox/arginine/Viagra formula with supplements.... I use aginine a blend that I like...and ginseng, ginkgo, opc's, ect.... I have notice some good blood flow to my unit, now I'm using the VED also.... but I can tell since the ginkgo more warmth in my hands and feet, so I been doing research...
I found and you can read this at www.mayoclinic.com search under Ginkgo (ginkgo biloba L.)
The do a study on ginkgo vs trental(pentox)....claudication(painful legs from clogged arteries) is a diesease that trental(pentox) is prescribe for... this is where they use the ginkgo along with moderate exercise..... on the side of each case they look at for ginkgo such as the claudication they grade it for it's use..... this can go from A Thur F ginkgo for claudication got a A and it stated this meant A- strong scientific evidence for this use....
Coming from Mayo Clinic I felt positive about the ginkgo and the effects being somewhat along the lines of what I was trying to duplicate.... now the Viagra is the only question.... Horny Goat Weed... by getting a time released nox arginine one might be getting enough oxygen along with diet and OPC's and the VED.... I think we all have to evaluate ourselves....
Rico
Tim, Theophyline is also a major component of cocoa, and while too much of it can be toxic, the same is even more true of its pharmaceutical cousin Pentox. One of the major problems with early experimentations with Pentox was its extremely nasty side effects. What made Pentox the success it is today is the discovery that combining it with other substances (Viagra, Vitamin E, Arginine, etc.) made it possible to get good results with far less Pentox. I would suspect the same might be true of Theophyline, since it has extremely similar pharmaceutical qualities. The recommended amount of cocoa for an optimum dose of Theophyline is 4g per day and that is what I am for. I have been taking it for some time now (I bought 34lbs of it!), and have not suffered any noticeable ill effects as a result, at least none that I have been able to connect to the cocoa.
Rico, Actually Dark Chocolate and Cocoa are not the same thing. Dark Chocolate is a confection made from a mixture of Cocoa Nuts and Cocoa Butter, along with sweeteners and other 'adulterants'. I prefer to consume pure Cocoa Nuts which I have ordered in bulk from the Carribean which are sugar free and have very little fat content. It is also much less contaminated with heavy metals which somehow tend to find their way into Dark Chocolate. I get the 'nib' or crushed form of the Nuts, rather than the powdered form. This allows me to weed out the pieces of husk which tend to be loaded with lead. And once those are ground up into the powdered form, there is really no practical way to get it out. This is why I try to avoid the powdered form.
- George
Rico, great find on the Ginkgo! Mayo Clinic is indeed a great source of info on supplements. It does indeed appear to be another possible 'work alike' substance in relation to Pentox. Unfortunately, I am taking Thiazide and Ginkgo, like Aloe Vera is also an anti-diuretic, thus conflicting with Thiazide drugs. (Aloe Vera also has the characteristic of depleting potasium, which is also not good for use with thiazides). Its amazing the number of drug interactions you find with supplements. I would suggest to all who are using supplements to make use of online interaction checkers to make sure you are not in danger of poisoning yourself with potential interactions. Here is a good checker: http://www.drugdigest.org/DD/Interaction/ChooseDrugs/1,4109,,00.html (http://www.drugdigest.org/DD/Interaction/ChooseDrugs/1,4109,,00.html)
This is one reason I simply write off the suggestions of some who say that supplements have no pharmacuetical value. If this were indeed true, one would not have to be concerned about interactions with supplements any more than with food.
- George
For those of you who might not be aware of just how 'hot' Pentox is these days in terms of research efforts:
http://www.clinicaltrials.gov/ct/show/NCT00243789 (http://www.clinicaltrials.gov/ct/show/NCT00243789)
http://www.clinicaltrials.gov/ct/show/NCT00267670 (http://www.clinicaltrials.gov/ct/show/NCT00267670)
http://www.clinicaltrial.gov/ct/show/NCT00188552 (http://www.clinicaltrial.gov/ct/show/NCT00188552)
http://www.clinicaltrials.gov/ct/show/NCT00285298 (http://www.clinicaltrials.gov/ct/show/NCT00285298)
Thats just a sampling. Note that they are all currently recruiting! Thats just how promising Pentox is at this point when it comes to diseases involving fibrosis.
- George
In Feb of 06 Dr. Lue released a paper describing a case report of a 51 year old with peyronie's & a 30 degree curvature. The patient was prescribed pentoxifylline 400mg three times a day & took the medication for 6 months. Upon re-evaluation at 6 months his penis had straightened to 10 degrees but still demonstrated an hourglass deformity. It also stated that a series of 16 patients with extended follow-up would be soon part of a new report to further describe the eficacy of pentoxifylline. Does anyone know if this follow-up report has been released yet? Does anyone know of an MD that has prescribed a different dosage other than 400mg 3X a day for peyronie's? Thanks.
Mark, one thing I can tell you about Pentoxifylline is that one of the major problems in its use is that as the doses are increased and get more effective, the Pentoxifylline becomes more toxic. The solution has been to combine smaller amounts of it with everything from Viagra to Vitamin E and Arginine and other substances. If Dr. Lue is specifying 400mg three times a day, it is probably because he has found that to be the optimum dosage. High enough to be effective in combination with other prescribed substances but low enough to be safe. Safety has been a significant problem with Pentoxifylline. As the dosage is increased, the side effects tend to become very pronounced. At this point in time Dr. Lue is one of a handful of real gurus when it comes to Pentoxifylline. I would trust his judgement on the dosage issue. The bigger question is what can be taken along with it to add to its punch.
- George
My read on Pentox is that as meds go it is considered very safe in people with normal kidney function even at levels of 800 mg 3 X per day. While I guess we can call all substances toxic, and while things like poor kidney function can increase risk of most such substances, Pentox has low toxicity, and rare occurrence of any serious side effects.
Mark501,
The report you are talking about had been discussed several times on this forum...no follow up report....once again if you scan Thur the forum you will find many post on this report...
I have read some doctors prescribe pentox 400mg twice a day..... It seems Lue is on the 3x400mg and does seem to be " The Man" when it comes to this formula....kind of like the Old Man when it comes to the VED..God Bless HIM!!
Someone could take pentox 400mg x 2 per day and 50 mg of Viagra and who knows.....I have read the 50mg of Viagra taken three times a week for penis health.... I wonder if the Viagra dose is kept at where it is for cost effective? If one already has good circulation then what is the best formula, does one size fit all?? This is a problem I always see with OTC meds and supplements..... if I read a label that says one a day, well if you weight 100lbs or 200 lbs....what is it written for, I start with low dose and then adjust base on how I feel.... I'm looking at 400mg twice a day with arginine of 500 three times a day and 50mg of Viagra once a day....or 50mg of trading a day....I put this out to some doctors but got no answer on my email yet...so I'm doing the research my self....if I have to spend 150-200 dollars on Viagra a month for six months I will find a way to make it happen.....
If I was lucky enough to have Lue for my doctor, this is what I would ask him, if money is not the question, then what should I do, if I workout and exercise a lot and have good circulation, then would two x400mg of pentox be enough and more Viagra ect....maybe someone who is seeing lue could ask him this for all of us:)....
Rico
While waiting for some results from those of you pioneering the Pentox trials, I am continuing with supplements. The reports here suggest that norvaline is worth adding to my 1g/day arginine. However, I am not sure how much norvaline should be added. Another problem is in the availability of norvaline here in the UK - so far I can only find it in body building formulations such as:
Arginine E2 Matrix Blend – 2150 mg.
- Arginine Ethyl Ester HCI
- Ornithine Ethyl Ester HCI
- Norvaline
The norvaline content is not stated, and I am not sure whether ornithine is good or bad for Peyronies Disease. I think that supplying these as ethyl esters hardly matters except that it makes them more expensive.
Another formulation I have found is:
DiArginine malate
Citrulline malate
L-Norvaline
Cinsulin™
taurine
Again, the quantities are not stated and the other items may not be suitable for Peyronies Disease.
As you might expect, these supplements are not cheap, and are accompanied by a lot of marketing hype.
I would rather use straight norvaline if I can find it, preferably in the UK - any suggestions?
Also, a UK source of natural Vitamin E with high gamma tocopherol + tocotrienes would be useful.
Percival
I was taking Zyflamend when my Peyronies Disease got significantly worse. The cause of it? I doubt it. But certainly didn't keep me from getting worse.
Tim
Just wanted to bump this as I fear it might get buried in all the "spicy talk" that's been going on here lately...
;)
Hey all. Looking for ways to tweak my meds/supplements and thinking that I should probably look into a better form of Arginine. Currently I'm taking tablet from NOW Pharmaceuticals. The labels says "Double strength, free form and under ingredients all that is listed is cellulose, stearic acide, silica and vegetable coating. I know other potentially more effective forms of arginine have been discussed here (primarily by Rico although I think by others). I'm wondering what you all might recommend. Oh, by the way, I'm currently taking 5000 mg/day spread out over four doses (with a 2000 mg dosage before bedtime).
Thanks in advance for any help!
When I purchased a new bottle of L-Arginine today I noticed a change to the label. They are no longer advising to take the capsules with water. The label now reads "with a carbohydrate drink to facilitate absorption". Have any of you guys noticed a similar change with the product that you use?
Mine does NOT say that. Strange since mine says take with meal, what difference would the drink make ???
What specifically is meant by "carbohydrate drink"? Like Gatorade, or Red Bull, or what?
Ooooops!
I made a typo below. I meant to type that mine does NOT say that. I will correct it now.
A carb drink would be any sugar drink from juice to soft-drink, and I think the statement is nuts. If you take it with a meal, and every meal has carbohydrates, it seems totally stupid to designate what you wash the pill down with. I wonder if that is for arginine loading as some athletes sometimes do by taking 6000 - 9000 mgs on an otherwise empty stomach?
I would dismiss it as being stupid and gimmicky.
Hawk is right that food is the same effect...to facilitate absorption a carbohydrate drink is easier to use and if you are doing it before a workout then you won't have a meal in your stomach.....it is hard to workout hard on a full stomach to tacos:).....but a carbohydrate drink makes sense, plus it keeps your blood sugar at bay and gives you a little energy without once again a heavy stomach of food to absorb....
Arginine is usually only taken at night on a empty stomach right before bed it you are looking to promotes fat burning....
For peyronies any snack will do or drink,like Hawk said some OJ....a carb is a carb....
Rico
Tim,
I will address this to you and anyone else jump in if you choose.... I'm going to my Urologist on Friday morning.... I have my articles on the pentox/viagra/arginine or the way I look at it pentox and pde5 inhibitor...
Tim if say someone already had good circulation....do you think that taking pentox twice a day at 400mg and cialis 5mg every other day, or to take more of viagra or levitra if you could afford it...... I know it is not a science yet, and I wonder if the amounts of the formula are price driven.... say if you could afford it, would taking 400mg of pentox twice a day with 50mg or viagra or 10mg of levitra or cilias 5mg each day....... what is your opinion of this..... I have read several post on the old forum or other forums where 400 twice a day and the cilias..... arginine would be 500-700 mg three times per day....thanks for your input on the formula and adjustments as you could see them....remember if money is not the issue also...
Rico
Rico,
When you say arginine is usually taken only at night and on an empty stomach I take it that you are referring to high performance athelets and NOT refering to men with Peyronies Disease. Or, are you suggesting that men with Peyronies Disease should not take a divided dose with meals?
Hawk,
I'm sorry, I meant arginine is taken at night on a empty stomach to promote fat burning while one sleeps, other wise it can be taken with a meal or taken with some carbs to help facilitate absorption for muscle pump and energy... one has to remember if they take it in a drink for bodybuilders then the label or instructions are geared for a workout..... you can look up arginine and delta sleep, it you have taken arginine at night on a empty stomach it will help burn more fat.... so I meant on a empty stomach then and with carbs other wise....I put that in that post now, thanks for the catch....
Rico
Hey guys. A couple of questions for y'all on this fine Sunday morning. :)
1. First of all, I'm still looking for a good arginine formula. I know some of you must have some suggestions. Rico, I think you've posted on this before but wasn't clear what exactly you are using. In essence, I'm thinking that the L-Arginine pills that I've been popping might not be as effective as some of other stuff for distributing arginine within the body. I'd love to hear any recommendations for stuff that might work better.
2. I've noticed lately that my libido has been pretty low. I do wonder if Peyronies may be a factor here in terms of causation or correlation. It also seems to me (and no, I don't have any evidence to back this up) that low libido/test levels might be something that people with Peyronies Disease would be wise to take steps to correct. So I guess it's two questions wrapped into one: (a) Should low libido/test levels be somthing to be concerned about? and (b) Are there some things that I can be doing to improve in this area? I'm on pentox/arginine/viagra + ACL and multi, eat pretty well, get lots of exercise, etc.
Thanks!
DannyOcean,
If you go to bodybuilder.com you can read on arginine supplements, I take xyience products my self...I believe there are ones out there that are just as good...gnc has some products and a good site also to read on.....NOX by xyience if you don't want the creatine...I do nox-cg3 this does have creatine in it, I get a good pump from it, I cycle on and off, four to six weeks on and then 10 days off....you can do nox with this also, nox has a arginine complex, ornithine is a precursor to arginine and is in it....
Pentox takes a while to work, don't get discourage with this, I think that what your taking is the state of art for blow flow...I have read that pentox can take up to two months to get working right in your body for full effect....
Libido for peyronies is effected by the studies, some 70% of peyronies cases are effected because of the mental aspects of the disease, and of course is relative to your condition, a mild case vs a serve case....plus over all health and how one handles stress....if you don't use it you lose it...taking the Viagra at night, are you having night time erections? this is so important to induce erections and getting the oxygen in your unit, I think kobold said that Dr. Lue said to try to induce a erection at night.....
Horny Goat Weed and other supplements *suppose* to help, but I don't think I would do anything with what you are taking...
I have gain a 1/2 inch back in size and more girth from the VED, I'm going into the second month now....this crap can make one not feel sexual, somehow you have to find a way to feel sexual..easier said than done for some...I had this problem for sometime also, I started to do a little dating, flirting is healthy, you start to think about sex and this helps:)....you almost have to forget about peyronies and think of the old days, let your mind run free...this works for me....I know my case isn't as bad....<30 and stable....I went to my Urologist on Friday, he said my plaque was the same or a little smaller....my condition seem to stable after six weeks.....erection where week for awhile...I was not thinking of women and not dating either...there has to be a stimulation to get a erection....I wouldn't over think this right now, keep working out, maybe talk to someone, a doctor, relax and let the pentox do it's work, then read on the VED....I didn't start the VED till I was four months into the condition, now I'm getting strong erections again, pumping it up everynight for ten minutes and seeing you hang heavy is a good feel and for me play positive on my mind.....also coming to terms and having a plan helps also, and having sex with a woman and her saying she wouldn't of know if I didn't tell her....but this once again is not everyones condition, I'm lucky and thank God for that..... you seem yours isn't as bad either, and knowing that and also you have a good doctor....
When I went to my Urologist on Friday, well he doesn't know anything about VED or pentox ect.... I told him about my diet, Epsom salts and working to stop inflammation, he thought this was good and said the plaque might of stopped without this, but it is good for over all health....he was against the VED when I saw him, when I called he did write the script for it, when I can in after using it for seven weeks and told him about the gain in 1/2 inch and I brought a copy of the protocol with me, he was interested and ask if he could keep the copy, I also brought him the pentox/Viagra/agrinine he said pentox couldn't hurt you, he hasn't read much on it though and I gave him some information to read on it, he said he would call me on Wednesday to give me his thoughts on it.....he gave me free samples of Viagra and cialis.....it felt good to hear from him that on a scale of 1-10 he felt I'm a three or mild, he said I would have a good chance if it doesn't change in another six months that it wouldn't progress....
Maybe if you remember that the VED is available after your plaque is stable will give you mind and attitude a adjustment and this hope will give you more of a sexual well being and will help your erections, this help me, for some reason being proactive and believing in the VED and this hope made my mind stronger....
My prayers go out to the peyronies brothers that have the degree of curve that makes sex impossible, you aren't one of them, or the ones that don't have access to medical treatment, you are on the state of the art medicine and at the early stages of your condition, be thankful for that....get out there and flirt...it is healthy......I would download as much information on the VED as you can get, I took the study from Alabama, it looks professional, plus I took Levine Q&A saying he is using it, and his profile from the APDA site, doctors need to hear it from other doctors, not from some peyronies people emailing each other, this is how they think, this changed the mind of my doctor, I know yours is against it, but show this to him and in a couple of months you can be using it also...there is hope for you...
God Bless...
Rico
Rico,
This is one of the most helpful posts I have read here on the forums and I really (really!) appreciate it. I am going to make a big push for the VED when I see the uro again in a few weeks. I'm going on around six months and I haven't really noticed much change as of late. So I'm guessing I've probably stabilized.
I would love to try the Horny Goat Weed but I'm not sure if I should add it seeing as how I am already on pentox/arginine/viagra. Definitely something to keep in mind for the future perhaps.
I am thankful for the fact that I have a mild case and empathize with those who have more serious cases. I guess a little loss in libido really doesn't compare much to conditions in which people can't have sex at all.
Anyways, thanks again for this help and encouragement. I'm going to plan to look into the arginine formulas that you suggested right now!
Danny,
There would be no point in taking Horny Goat Weed if you are taking a PDE5 inhibitor 25 times stronger (Viagra). While I believe that taking supplements and using herbs can be very beneficial, you should always have a specific objective for everything you use and never have an approach of "I think I will throw in a little ..."
Even taking the approach of having an objective for every supplement added, and soundly researching that supplement, you still run a degree of risk. You , me, Doctors, pharmacists, nor research scientists can begin to tell you what far reaching effects various supplements or even foods may have inside of complex individual bodies.
I agree with you Hawk. No reason to go down that path at this point...
Hey Rico (et al), I had a look around at some of the L-Arginine supplements and have some questions.
1. I looked at NOX-CG3 from Xyience. It does appear to have some extras that I don't necessarily need at this point (e.g., creatine). However I do wonder if any of the extras might actually be beneficial. For instance, I've taken glutamine in the past as a workout recovery supplement. Wondering if it be beneficial here?
2. The amount of arginine in a dose fo NOX-CG3 appears to be 1.5g. I'm currently taking 5g/daily so in order to achieve that with the NOX-CG3 I'd have to take more than 3 scoops a day. Not only would that be pretty expensive but I'm not sure it's healthy (for starters, that's a lot of creatine...). I'm wondering if it would be better to take less arginine in a supplement like this or take more of it via pills like I've been doing. Hawk, perhaps you can chime in here as it was because of your reco that I bumped up to 5g/daily in the first place.
Thanks guys!
Danny,
Look up Nitrix. It has 1 gram of l-arg per caplet. It has l-citrulline and folic acid. The other stuff in there is nothing scary. But, check it out yourself. I was able to stop taking an extra pill (l-citru) by switching to this.
Liam
DannyOcean,
I think what the doctor has one do with the pentox/viagra is to take arginine 500mg three times a day, which I think is plenty with this program.... the one Liam said was good, also you can get l-arginine l-ornithine combo at gnc for 12.99 for 60 caps..... to tell you the truth, with the pentox and viagra the arginine even in a cheap brand or stand alone is going probally to do about the same for your peyronies, the pentox and viagra have the big punch....arginine during the day will help keeping blood flow...if I was you I would google foods high in arginine, you will find nuts which you can snack on during the day also...... I'm cycling off of arginine right now for ten days.... You have to remember to take your pentox three times a day and it takes a little while to kick in....
Stress might be a problem you are having....especially in the early phases of peyronies....circulation problem is the reason they put you on pentox...you might just be getting use to it also, take some hot baths, work out, how is your diet...
DannyOcean I would save my money before I threw it at more supplements, If I was you I would make sure I take my pentox on time, viagra, and arginine 500mg three times a day only.... this is plenty in this combo.... now only take a multi vitamin with this... now break down the stress management/exercise/diet and think about the VED... bring the information to your doctor on it, the 26 week protocol from spivey in Alabama..... read the whole VED thread(twice)....figure out which system you want(multi cylinder I recommend) to buy if your not building one..... during your pumping consume up to a half gallon of distilled water everyday...... people *might* get loped sided with there approach, all pills, or all VED or all supplements........ Once again you have the right medicine and supplement combo....I think now you need to add the VED and focus on a couple of other areas....this is just my opinion... and my last post on Horny Goat Weed, I said I wouldn't do that with what you are taking...you don't need it... you don't get a hard on when you pop a Viagra, you have to be arouse first.......if it isn't a medical reason from say a prostate operation then it is in your head...stress...and I know, peyronies will rock the toughest SOB back on his heels for a while....
Rico
DannnyOcean,
I bought this at GNC today....no creatine....expensive 89.99 less 20% for first week discount gnc my cost 72 dollars for a month supply..... about 4000mg of a arginine complex and a excellent arginase inhibiting complex....deca-arginine which is a advance arginine delivery complex....this is a time release product.... I went through ten products and found this to be just what I was looking for..... if one was on the pentox and viagra, taking two three tablets a day, this would last you two months or one dollar a day..... they have a web site also www.bio-supplements.com com you have to make sure to get the biogenetix No-D2T
Rico
Here is another interesting Arginine supplement. The manufacturer actually stopped production of it, but it was so popular that they plan on having more of it available in a week or so. Bodybuilding.com carries it: http://www.bodybuilding.com/store/sns/arg.html
George
George,
That is a good product and very close to the NO-D2T I bought today....cheaper, but if you look at the 2000mg vs 4000mg which is the case, you are getting the same thing for same price in a different package, this seems to be the new delivery system, you where the one I think that got me interested in the arginase inhibitor....good find George...
Rico
George
The supplement you mention is availble here in the UK but I am wary of taking it because of Tim's post on October 1st which suggests that ornithine might be bad for Peyronies Disease:
The induction of arginase, an enzyme that metabolizes L-arginine to urea and L-ornithine, is essential for collagen synthesis (5,6). Indeed, L-ornithine produced by arginase can be further converted to proline, which is a central component of collagen
Arginase metabolizes L-arginine to urea and L-ornithine. L-ornithine can be further converted to proline, which is hydroxylated to form hydroxyproline. Given that the primary structural motif of mature collagen is (Gly-X-Pro/Hyp)n, overproduction of L-ornithine via an upregulated arginase activity would feed pathways favoring collagen synthesis, and thus contribute to the development of fibrosis.
I would prefer to combine just norvaline with arginine if I can find such a blend.
Regards,
Percival
Ornithine helps arginine, which gives you blood flow which shuts down inflammation which in turn makes your body quit making scar tissue.....ornithine has nothing to do with more scar tissue being made, what it is is a precursor to arginine, once again to enhance it's action.....pentox delivers oxygen rich blood to the area you looking to heal, it isn't the pentox, it is the action that it causes, once again the oxygen rich blood flow.....bodybuilders have many injuries, so do other athletes that take these supplements, they don't want more scar tissue on there scar tissue either.....the reason they use them is that there pumps are bigger and more blood flow to help heal torn muscle fibers to heal quicker......
Rico
Here is the cycle:
Ornithine to (via carbamoyltransferase activity):
Citrulline to (via Argininosuccinate synthetase):
Arginosuccinic Acid to (via fumarate):
Arginine BACK TO (via Arginase):
Ornithine!
That cycle creates urea and also shunts (I think) into collagen and proline production.
So, when one is doing OK, shunting into the cycle is OK, if one is not prone to inflammatory changes that are unregulated. If Arginase is well expressed, then it preferentially does this cycle and creates collagen.
However, if argenase is inhibited (this is where Pentox comes in), then the arginine shunts to NO via NO synthase pathways.
So, IMHO, the key here is the arginase, and the preferential pathway to collagen VERSUS the NO synthase mediated pathway towards NO and anti-inflammatory effects.
As always, I must make the caveat that it is more complicated than this, but I am not yet smart enough to understand it, much less explain it.
Tim
Ginkgo Biloba extract alleviates Fibrosis in Rats....
http://search.medscape.com/uslclient/searchMedline.do;jsessionid=2D980EBABCB26BF3EF67011FCEFB9494?newsearch=1&searchfor=Clinical&cid=med&queryText=16343076&sortField=score&SortOrder=desc&selectedDateRadio=5&medscapeSelect=0&journal=
I have been having such good results with my ginkgo(blood flow). I have been thinking of going to pentox, but now I found this article, which seems to me that the ginkgo works like pentox.....I think I will stick to what I'm doing and take cilias twice a week at 10mg.....
I'm taking 60mg twice a day....you don't have to take with food....you can take the one a day, it comes in 120mg....most say not to exceed 240mg per day.....one might think about there body weight.... I'm moving to 180mg a day...60mg x 3..... out of all the supplements I have used so far, this I can tell is giving me good blood flow and has research and positive research from sources like Mayo Clinic...
I can tell how popular a supplement is by the one store I use to get my dmso and apple cider and castor oil....they only give a product several inches of shelf space....Ginkgo ..two full shelves....number seller....the people that you meet in there are educated and have been using supplements for decades, I always in up staying there for a hour, they have a reference library you can use....I should post this on the dmso thread, but I have been using dmso cream it is 70% pure dmso/30% rose hips and aloe...I smear it on thick, wrap in white cotton gauze for two hours before pumping, I get circulation going after about one hour with it on, like a chubby...plus it feels good....I do the thacker to, but I like this cream and go back and forth....16 dollars for a ounce and that will last two weeks....
God Bless...
Rico
Percival, unfortunately, I known of no source for Norvaline a la carte other than in the raw powdered form directly from the major distributors. As for the E2 Matrix product, I think they are depending on the Norvaline component to block the dark side of Ornithine by inhibiting Arginase. I really don't know how effective that would be, but I can tell you that having hypertension, I would suspect that I have an major Arginase problem that extends beyond Peyronies. I have tried all manner of Arginine supplementation to no avail. I have had the E2 Matrix product on order for over a month now and expect it to arrive within the next few weeks. I really don't know how it will work, but I will try it and report back. What I can tell you is that I found Rico's tip about taking Arginine with a carbohydrate food very helpful. I have tried that (a small bowl of fruit) yesterday with some Arginine HCI and that was the first time that the Arginine really seemed to kick in with a vengeance. My veins became unusually dilated and I suddenly felt a burst of energy that enabled me to reach and maintain a treadmill pace that was significantly uncomfortable before. The next step will be the E2 Matrix product, I will keep you informed.
Rico, I am so glad to hear that you are doing so well. It seems like some of the things you are taking (including the ginkgo) are really working for you. I am so happy to hear that. Perhaps you should think about adding a post to the 'improvements' thread and list there the stuff that is delivering for you. I know that it is easy to chalk up improvement to 'spontaneous remission', but in such cases, there is *something* that has to trigger the remission. I just know that given the right combination of stimulus, this condition can be defeated. I have been told, for example, by physicians that it is not uncommon for calcified tendons to 'decalcify' under the right conditions. If it can happen with tendons, it can happen with Peyronies, there is plenty of reason not to give up on the search.
- George
I just made a correction to the site yahoo search(go down to six link with medscape) it should be inhibiting instead inhibitor :P
ginkgo growth factor beta-1 inhibiting
http://search.yahoo.com/search?p=+ginkgo+growth+factor+beta-1+inhibiting&ei=UTF-8&rls=org.mozilla:en-US:official&fr=moz2
Quote from: George999 on November 08, 2006, 02:22:42 PMI have had the E2 Matrix product on order for over a month now and expect it to arrive within the next few weeks. I really don't know how it will work, but I will try it and report back. What I can tell you is that I found Rico's tip about taking Arginine with a carbohydrate food very helpful. I have tried that (a small bowl of fruit) yesterday with some Arginine HCI and that was the first time that the Arginine really seemed to kick in with a vengeance. My veins became unusually dilated and I suddenly felt a burst of energy that enabled me to reach and maintain a treadmill pace that was significantly uncomfortable before. The next step will be the E2 Matrix product, I will keep you informed.
Hey George. I was able to find the E2 Matrix product in stock at a1nutritionproducts.com tonight and ordered a couple of bottles. I'm going to switch over to a capsule of this 2x/day once my current arginine supply runs out. Thanks for tipping me off to it.
I am going to see a new Uro on Monday, and would like to talk to him about the PAV "cocktail". Can anyone tell me what doses they are taking for this trio. Thanks.
crs
csup,
I don't take it but this is is the dose being recommended by Dr. Lue......400mg pentox x 3 daily, viagra 25mg x 1 at bedtime and arginine 500mg x 3 daily pentox and arginine should be taken at morning noon and night....
Rico
csup,
I just went to my Urologist last Friday.... I went to the APDA web site and click on to the SMSNA site there, I put in peyronies in the search engine and found a report from the AUA conference in 2005 on pentox/arginine/viagra or pde5 and pde4 inhibitors.... technical report....written by doctors for doctors...
I also brought in some Q&A from Dr. Levine on Pentox and then download his profile from the APDA site...
I brought in the Spivey report from Alabama on the VED and the 26 week protocol.....
I also brough in the front page of this forum and how to come here and read on real people with peyronies and get some good information...
I found a couple things about Dr. Lue and the one report on pentox also and Dr. Lue's profile....
He(my doctor)was against VED and Viagra ect, now he is becoming a believer......I have both that he prescribe, plus he is doing research on the pentox(he did say this can't harm you).... I haven't made the choice that I need it yet....my blood flow is good from ginkgo and Opc's at this time....and haven't come to the conclusion that gingko isn't doing the same thing.... my gut is that pentox delivers a bigger punch....
It will much easier for you to hand him a folder with all the programs laid out, I even high lighted all the pentox portions for him...
It help me and I thought like Steve said, I'm ringing the bell:)...
God Bless..
Rico
Rico,
Good pro-active move! That is always a good approach, and it would probably be good if we put together such a packet in our "Resource Library" area so members could print off and take to their doctor.
I made it to Chicago and my appointment with Dr. Levine. I feel like I'm in good hands now, this guy is the real deal. My new regimen is Pentox/Cialis/Arginine.
Like Steve said, you are ringing the bell....thank you...
Can you misterb tell us more......how much pentox and cialis, what's your condition, are you mild <30 degrees 30-60 moderate or 60> degree....how long you have had peyronies ect....
This information for the peyronie brothers who can't get a first hand doctor is the most valuable information they can get....thank you and God Bless you....
Rico
Rico,
Thanks for the great input. I definitely will look into that site and copy info to show my doc. I was already going to tell him about this fantastic website, but your idea to copy the front page is good.
I wanted to know dosage levels as I had tried Viagra a few years ago for a temporary ED condition, but they gave me a severe headache and plugged up sinuses within 15 minutes of taking them. Threw them out after the second attempt. Luckily my condition at the time was mental and not a physical condition. I don't remember the strength, so I am a bit leary about the 25mg dose. Will just review this all w/ the doc I guess, and see what he says. Thanks again everyone for all your support and help.
crs
Quote from: Hawk on November 09, 2006, 11:42:08 AM
Rico,
Good pro-active move! That is always a good approach, and it would probably be good if we put together such a packet in our "Resource Library" area so members could print off and take to their doctor.
This would be awesome. I'd love to see it include some evidence related to the VED as I'm planning to see my uro again soon and want to pitch him on that. Old Man, you might be the best person to help with that? :)
Quote from: csup on November 09, 2006, 03:17:27 PM
Rico,
Thanks for the great input. I definitely will look into that site and copy info to show my doc. I was already going to tell him about this fantastic website, but your idea to copy the front page is good.
I wanted to know dosage levels as I had tried Viagra a few years ago for a temporary ED condition, but they gave me a severe headache and plugged up sinuses within 15 minutes of taking them. Threw them out after the second attempt. Luckily my condition at the time was mental and not a physical condition. I don't remember the strength, so I am a bit leary about the 25mg dose. Will just review this all w/ the doc I guess, and see what he says. Thanks again everyone for all your support and help.
crs
As an FYI, I've had no adverse side effects with the 25 mg dosage. I'd definitely give it a shot as my guess is you were probably on a higher dosage before.
Danny Ocean:
As far as I know, there are no official clinical trials and/or studies completed at this time. There are some underway as I understand it. The one in Birmingham, Alabama, has not been reported out at this time. It is supposed to be studying quite a number of guys using the three cylinder VED.
If and when that study is completed and the results made public, then there might be one that could be taken to one's uro/MD when going for a consultation, etc.
For now, all we have is the testimonials of several guys on this forum as well as myself. Would be hard to explain to your uro about us without verifiable resuslts. But, by all means, tell him/her about the forum and ask that they log in and see the posts for themselves. I would be glad to email or phone them with my positive results with the VED.
Regards, Old Man
Dear forum members:
I would like to open a discussion on Ginkgo and pentox..... if anyone can tell me what they feel is similar or not about the two...... I think it would be nice for members and guest to have a alternative to pentox if they cannot afford or have access to it or medical help.... Thank you...
Rico
I'm taking 400mg of Pentox three times daily, 1g of Arginine daily, and 10mg of Cialis every other day for a month. Then I cut back the Cialis to 10mg twice a week for a month and then 5mg twice a week the third month. After that time, I go back for an evaluation. I'm not exactly sure how long I've had Peyronie's. I first noticed the curvature about 14-15 months ago. It's less than 30 degrees.
misterb:
Thank you....I just started the cialias of 10mg every other day, and the arginine I have been taking, by chance I'm taking the same amount, and my thought was a loading dose then taper off, do you think this might be Levinve thoughts also? For members and guest also can you break down the arginine in mg and how many times a day?
Thank you for the personal pm also....I will share with the members that Dr. Levine didn't mention VED....never brought it up....
Did he suggest misterb that you cut up 20mg of cilias? And I believe the dose of pentox stayed the same through out the program?
Thank you so much for ringing the bell....
Rico
I've been taking 500mg of Arginine twice a day and he didn't suggest I do it any differently, he said nothing about loading and tapering off. I cut a 20mg Cialis in half (which isn't easy due to it's shape) and yes, the Pentox dosage remains the same throughout the three months.
Folks should recall that the studies with rats went for 45 days (a long experiment time for rats) and the case reports with men were for over two years! Pentox will help slowly if it helps at all (and it should). The rat data show *prevention* of lesions when pretreated in rats, and *reversal* of lesions when started after a lesion develops. BUt "long-standing" lesions are obviously difficult to study in rats (the model doesn't exist yet).
Tim
Dear forum members and guest:
I have been interested in the formula of pentox and a pde 5 inhibitor such as Viagra and cilias.....and arginine....
Oxygen suppresses TGF beta1 TGF B1 is a component of the immune system callled a cytokine.... if your immune system is out of whack, it keeps producing scar tissue...
Oxygen enhances the activity of phostaglandin E1....phostaglandin E1 is produced during a erection(pde5) by the muscles cells in the penis, it activates and enzyme which suppresses collagen(scar tissue/plaque)....
Strong erections at night give you the most oxygen rich blood and suppresses collagen....
Pentox is a delivery system of blood to your unit, it is the effect(oxygen that suppresses collagen)...if a delivery system of blood, such as ginkgo, exercise arginine, OPC's ect...circulation to your unit, then depending on your health would determine the effect equal to that of pentox.....
The ED part of the formula seems to me to be the most important part of the formula to duplicate at this level and myself I just started on cilias 10mg every two days....cilias having a fairly good dose for a 24 hour period....I have found from my reading and myself at 180lbs that 60mg of ginkgo taken three times a day with OPC's and lots of brisks walks and running have increase my circulation....
The only reason I'm writing on this is I feel some people don't have access to doctors and the money or resources to seek help, but I feel should be given the background of what the formula is about....if one was to get 20mg of cilias and cut in half and take ginkgo and arginine or start walking everyday for several miles....in many studies on pentox and ginkgo, this is one of the doctors suggestions.....
It is funny how we talked about the ED drugs and baby boomer's coming to peyronies rescue, I know believe that in the the formula the pde5 inhibitor is the key drug to have.....mix that with oxygen, it don't matter how it comes, walking, ginkgo, pentox...and nox(arginine) opc's(circulation), just more oxygen....oxygen runs everything, if you don't' believe that, put your head under water for three minutes.....
Oxygen rich environment will also promote your body to eliminate foreign material....
Don't forget to drink plenty of water also to help eliminate this material..
If money was tight for me....I would buy some cialis from Canada....arginine 500mg twice a day and ginkgo 60mg three times a day....along with a two mile walk, no smoking, and a half gallon of water a day.... good diet.... and VED multi cylinder, build your own if you have to and at least have a small and medium cylinder to start....
Rico
QuoteOxygen suppresses TGF beta1
But Rico, this study http://ajplung.physiology.org/cgi/content/abstract/272/1/L60 (http://ajplung.physiology.org/cgi/content/abstract/272/1/L60) seems to directly contradict that statement. Do you have any reference that supports it?
Rico,
Based on what you are saying that; Pentox is just the vehicle that causes the blood to deliver the oxygen and that it is the oxygen that is the bottom line no matter what gets it there.
Would you then conclude that; A person with Peyronies Disease that has no trouble getting daytime and nighttime erections does not need pentox/arginine/viagra since their own system is delivering regular oxygen rich erections? Would you say these natural erections will satisfactorily treat their Peyronies Disease by naturally getting rid of the TGFb1?
Wouldn't this mean that 22 year old guys that get an erection 10 times every day and night would not ever develop Peyronies Disease?
George that study is a pulmonary study..... not the same article....I will send the study...
I stand by that statement 100% and can back it up..
Rico
Hawk I believe in many cases with men that have health issues many are cause by poor circulation.... pentox seems to be a good delivery taken three times a day, plus it does make the blood cells smaller to get into areas and cause more circulation....I believe billberry, opc's, ginkgo also promote blood flow...
If you have good insurance and a top notch doctor and can afford and have the resources and ability to take the pentox/pde5/arginine.... then this might be the right choice for you...
As a God fearing man I feel I need to help my brother with peyronies who might be on some island or village or doesn't have the means to get the Dr. Levine prescriptson....
I feel the affects of pentox can be achieved with other sources....I don't feel one can get the same punch from anything but what is on the market today for ED drugs....so like my post said, if you don't have the resources, ginkgo is cheap and I feel have the same effects(maybe not the punch) for pentox, and arginine at 500mg what you can afford, and get cilias or viagra ect... this is a must with a good quality VED with a medium of two cylinders to start..... We are not all privilege Americans or even some Americans with health care or resources and should have a choice, I have read articles that the choice for a alternative to pentox is ginkgo, ginkgo is the fifth biggest drug used in Europe....
Rico
http://www.impotenceforum.org/articles/imptence-231-1.html
George when you get to this site, first click on the site on the refresh, go to site, on right index go to article 231-1 html
Go to Erectile Dysfunction and Oxgyen Deprivation www.impotenceforum.org
Rico
Rico,
I am just looking for an answer to my questions. That post seemed to comment on several issues but not any that I specifically asked. It would help me to understand you better if you numbered your answers.
Quote from: Hawk on November 10, 2006, 03:24:53 PM
Rico,
1. Based on what you are saying that; Pentox is just the vehicle that causes the blood to deliver the oxygen and that it is the oxygen that is the bottom line no matter what gets it there.
Would you then conclude that;
2. A person with Peyronies Disease that has no trouble getting daytime and nighttime erections does not need pentox/arginine/viagra since their own system is delivering regular oxygen rich erections?
3. Would you say these natural erections will satisfactorily treat their Peyronies Disease by naturally getting rid of the TGFb1?
4. Wouldn't this mean that 22 year old guys that get an erection 10 times every day and night would not ever develop Peyronies Disease?
Rico,
Thanks for the confirming data! What you have pulled together here is indeed fascinating stuff. But PLEASE FIX THE LINK! I think it would be easier if you would use cut and paste to insert your links and it would put an end to the 'spelling' errors. But indeed this puts a lot into perspective. The key seems to be that TGF-beta 1 levels are related to proper oxygen utilization and Pentox via its capability to make red blood cells more flexible allows increased oxygen to tissues that are oxygen starved thus reducing the production of TGF-beta 1 as a result of oxygen deprivation. This is indeed an interesting insight into the way that TGF-beta 1 suppressors work. I had just not made that connection before and kind of assumed that oh, here goes Rico again on an oxygen rant, but really you have done some good detective work here and come up with some good insights. It gets my respect!
- George
Rico, Hawk is hitting on some good points here. Pentox does the job by helping oxygen carrying red blood cells make their way through damaged capillaries that normal red blood cells cannot penetrate. Apparently there is some evidence that Ginkgo does something similar. But exercise? Granted, exercise is good and thoroughly oxygenates the blood and all that is a good thing in general and a good thing for Peyronies (I have seen its benefits personally). But I don't think it can be compared to the effect of a true TGF-beta 1 inhibitor, be that Pentoxifylline or a work alike supplement. And I can tell you that no supplement is going to have the punch of an engineered drug. So while I think you got most of this right and introduced some valuable concepts (certainly some things that I learned from), I think on some points you are perhaps a bit astray.
- George
There is no excuse for posting a bad link except when the link changes after it has been posted, or if your access to it is dependent on your computer domain (and you did not know that).
One merely goes to the page in question, and copies the banner with the address at the top of the page. It is easy:
http://www.impotenceforum.org/articles/impotence-231-1.html
I did not type a thing to get this here - I simply copied and pasted it.
Hawk,
You where a Policeman, you have to turn down the light a little:)...
OK boss here it goes, by the number(and you know I love you:)).
1. I believe that pentox delivery is effect to small limbs because it reduces ones blood cells in size to get to smaller capillaries, I had stated this once before in a post.... I was posted back saying that this had nothing to do with it and blood was deliver to the penis by large blood vessels, I think it was you who posted this....it was during the isn't that a fancy way of saying circulation or oxygen....
Can this be achieved with ginkgo and billberry, some think so.... also exercising the upper thighs is pr oven to increase blood flow to the penis by 25%.... doctors recommend walking....I believe Pilate's which focus on the groin and core also helps...
As far as pentox goes, yes I believe 100% it is the oxygen rich blood that the pentox delivers that is the benefit and because it is engineer to flow all day and proven effective is one of the best ways to deliver it, or maybe the best.....
2. Day time and night time erections......I don't believe anyone with a life has a hard on for twenty four hours, so this is a moot point to me, but I will answer the question....I believe the delivery of the pde5 and if you could handle the cilias makes a good choice for it produces phostaglandine E1 which activates a enzyme which in turns suppresses collagen, I believe this to be hard to duplicate and the engineering into this drug is state of the art and if you can't handle it you still have two other choices on the market, Viagra or levitra..I like the cialis because of the 24-36 hours it stays in your system.. a 22 year old man in excellent health with a mild case of peyronies might not need the same dose as a 60 year old man in poor health....
3. These questions to me seem to address the same topic, but here goes...
I think once again once someone has the trauma with the peyronies being physical and metal...the stress ect....You don't have natural erections, how can you call a bent dick natural, you have a underlying issue with your unit.... I do believe there are several cases of peyronies...one being a injury...plaque in one area, heals normal, inflammation stops and behind is a piece of scar tissue......the other is the immune system is out of whack, keeps producing scar tissue, whole tunica get infected with peyronies...multipile plaques ect...... also I see <30 degree as mild and 30> to 60 as serious and 60> as a whole different ball game and my prayers go out to them.....a 25% reduct to a man with 50 degrees can mean having sex again, but to a man with 85 degrees really has no life enhancement effective, this of course if pain reduction isn't a factor....
4. a 22 year old man, I feel I have cover this issue......I will put a quick summation for you...
First I was given some poor men(brothers) without the resources to get as close to the formula and also for people who wanted to look into it and talk to there doctors understood what they were talking about..
I believe pentox has a proven track record, it is safe, and reasonable price, it has a excellent delivery system and will keep oxygen rich blood flowing to your unit if you take the medication as prescribed, if I wanted a more natural choice I would have to go with the Mayo Clinic study and pick ginkgo, can I say one is better than the other..well to me oxygen is oxygen....I believe this is the key behind dmso and the thacker, vacillator....billberry is good for the eyes, why, because it gets to the small blood vessels, so do OPC's makes the blood slippery..... all good:)!!
I'm 100% that Viagra, Levitra and Cialis especially because you can take it and it will produce phostaglandin E1 and activate the enzyme that suppresses collagen for up to 36 hours....powerful stuff, Horny Goat Weed and Maca....they are plain crap compared to this.... apples and oranges, where pentox and ginkgo are more apples to apples in my opinion and studies I have read....
Arginine is a no brainier, but take on a moderate dose and cycle off once in awhile for a week or two, remember to eat rich foods in arginine also like peanuts....
Hawk I hope this helps answer the questions you asked me....
As always God Bless You...
Rico
Sorry I haven't copied or paste anything yet, I better learn how, it would make my life easier also, then I can just put the article there for you to decide...
Rico
Rico,
Against the wall and assume the position! ;)
Rico, we have such a communication gulf between us it is incredible, but like Everest, it is a challenge and I would like us to scale it just for the challenge.
I ask others to ignore this if you like, but I must try again.
This is my request. I don't want paragraphs that I barely read. I don't just want numbers with unrelated information. I want one sentence answers to question #1. Put down a 1, and then answer my question number 1 with NO MORE than 2 sentences, then go to my question #2. At the end,
AFTER you answer all the questions, if you want to sum it up with a few sentences to make yourself feel good, then do so. I am interested in 4 simple answers to 4 simple questions?
Don' make me have you declared a hostile witness. ;)
Seriously, if you think I am being unclear or contributing to this communication breakdown, then please let me know that in a seperate post or PM.
Quote from: Hawk on November 10, 2006, 03:24:53 PM
Rico,
1. Based on what you are saying that; Pentox is just the vehicle that causes the blood to deliver the oxygen and that it is the oxygen that is the bottom line no matter what gets it there.
Would you then conclude that;
2. A person with Peyronies Disease that has no trouble getting daytime and nighttime erections does not need pentox/arginine/viagra since their own system is delivering regular oxygen rich erections?
3. Would you say these natural erections (that furnish much more blood than P/A/V) will satisfactorily treat their Peyronies Disease by naturally getting rid of the TGFb1?
4. If you answered yes to number #3, wouldn't this mean that 22 year old guys that get an erection 10 times every day and night would not ever develop Peyronies Disease?
1. Yes
2. No I think they would benfit from more blood flow and from cilias
3. No same as above answer
4. No same as two and three...
Rico
I don't know if I buy into the whole getting erections prevents disease progression. Way back along time ago when I was in top notch shape and did two sports in one season (cross country and soccer) I got daytime erections and my peyronies still got worse, or did it? Maybe our disease really isn't spreading, the scar or plaque we have is just shrinking and contracted and pulling the surrounding tissue tighter, hence we lose the flexibility. I think it would be beneficialy to track progression with ultra sounds, for me I don't think my disease has spread, but has shrunk and contracted, my body is trying to heal the scar.
Rico for posting the bad link your sentence is 23 months probation, $1500 fine, and your to have no contact with the PDS(victim) :D
ComeBackid,
First, as far as I am concerned, I never said erections do prevent Peyronies Disease. Nor, have I said they do not. That is the discussion I am trying to conduct with Rico. Next, I can not speak for all cases but Peyronies Disease scarring does not just contract. It clearly spreads just like the keloids on the man's chest that began as an infected follicle (scarring/healing gone awry). Surely you have seen the stunning photo in the PDS "Resource Library" that I am referring to. My Peyronies Disease has hit various areas of my penis. it first curved me down, then, up, then right, and now almost straight. The straight is from progression, not healing or reversal. The scarring began at an injection site near the base on the left side. I eventually developed more scarring on the opposite side 2/3 of the way to the tip and I am positive it is not done.
Rico,
If your answer to:
Quote2. Does a person with Peyronies Disease that has no trouble getting daytime and nighttime erections not need pentox/arginine/viagra since their own system is delivering regular oxygen rich erections?
is
Quote2. No I think they would benefit from more blood flow and from cilias
then I reject your theory. I have taken Viagra, Levitra, and Cialis at maximum dose, and at 25% dose per night for extended periods. A 25% dose of Viagra without sexual stimulation has an undetectable increase in blood flow (if any). If a person already gets solid, frequent, erections both day and night, that engorge him with blood, without stopping the progression, then an undetectable increase from cialis could have no benefit in my view. If miniscule additional blood flow from small doses of cialis can make a difference, you have certainly failed to explain a rational theory to support your statement. Rational thought is all I am interested in, not statements preceded with "I believe" followed by an unsupported statement.
For instance, if I were to say; I believe royal jelly, that makes the queen bee fertile, and makes her grow 6 times the size of a worker bee, will increase the size of your penis if mixed with DMSO and applied daily! No one can even work with such a statement? it is just a belief with no specific evidence, no fact, no theory.
Personal Note: It is easy for me to sound like I am picking on someone when I am picking an idea apart. I have talked with Rico on the phone. I have told several people in private (including my wife) that I was
completely blown away by that conversation. What a total gentleman and a pleasure to talk to. To chat with Rico is to instantly like him. I have possibly never spoken to anyone in my life that was easier to talk to and that I instantly liked. What may appear to be "nit picking" is nothing more than my way of digging through beliefs and ideas to see, if any facts, evidence, or theory, lie underneath.
Hawk, my current theory about Peyronies is that it is caused by localized microvascular disease. By this, I mean issues at the level of the capillaries. The way that Pentox works is by making red corpuscles flexible so that they fit through damaged capillaries providing oxygen to oxygen deprived tissues. So then, how does Viagra fit into the picture? The answer is that anything that promotes nitric oxide in the blood stream (and that would include exercise, so even Rico may have a point here) causes a slight amount of dilation in damaged capillaries which just might be sufficient for red corpuscles and thus oxygen to find transit. Arginine would be helpful in the same way. Theoretically, any drug lowering blood pressure via Angiotensen II blockade would be helpful. The problem is, that once you have an area with damaged capillaries that can no longer supply sufficient oxygen to that area, that cause ischemia (oxygen starvation) and results in localized inflammation and expression of things like TGF-beta and that inflammation and TGF-beta can cause damage to spread to adjacent areas. Thus this sets the pattern for degenerative disease. Pentox, together with nitric oxide promoters, anti-inflammatories, and anti-oxidants are, at least in my mind, the way to break that cycle and start the process of healing. The big catch here is that some things that, in theory, should be helpful, are in fact for reasons not completely understood, detrimental instead. But the PVA combination has been proven to work, and in theory any thing that promotes blood flow through otherwise impassable capillaries should be helpful as well. That is my concept at this point in time, subject of course to modification by the constant process of investigation and learning. And I believe more and more that this concept covers much of the whole spectrum of degenerative disease. (Right now, I am also exploring the area of using supplements to reduce soft tissue calcium as another possible vector in attacking this issue).
George,
We know that Pentox acts through other mechanisms than simple increases in red cell deformability. it is nice to have a red cell that can squeeze through a narrowed capillary, but I do not think that is enough of an explanation of how it works.
We know that Pentox inhibits expression of TGF. It is not some sort of washing away of TGF effects, but a direct effect on it's expression. This is true in cell culture where blood flow is irrelevant. So it cannot be enough of an explanation.
Lue has promoted a theory (that has some holes IMO) that inflammation is "trapped" in the damaged tunica. Because of the multiple very thin layers in the TA, when scarring occurs, he posits that TGF and other cytokines are "trapped" within these now mattted together layers. this is key to the ED component. The way that blood stays in the penis during erection is that as it swells, it pinches off draining calillaries that drain through the TA. As these somewhat tortuaous capillaries are tugged and pulled during erection (remember, that the caps traverse through the TA, going through one layer, then moving over a bit and going through the next micro-layer, that this stretching effectively closes off blood flow leaving the menis through the TA capillaries.
So Lue argues that the inflammation is thus "trapped" between these layers of the TA and thus do not get washed out by good blood flow. But that is, in turn prevented by the damage to the TA.
I am not sure it is an adequate explanation. Instead, I am now favoring a theory of several modes of injury. One would be a traditional large or small injury that progresses and heals slowly - the so-called spontaneous healing injuies (and sometime I am sure such patients do not heal completely). A second group have a predisposition to scarring because of a genetic predisposition to produce too much TGF beta - and their "causative injuries" may be so small as to be imperceptible. A third group may have poor blood flow (ie diabetes or with aging and cholesterol or blood pressure problems) - and for them the theory of trapped inflammation and inadequate O2 supply may be quite appropriate.
Tim
I started taking viagra at night and was getting lots of erections and waking up with them, I had a solid pipe down there, this makes me question whether you must have sexual stimulation to achieve erections when taking viagra, I'm not so sure on that. Dr. Mulhall told me I could take viagra daily to increase my penis size as well, I'm still trying to figure this out ???
ComeBackid
Hawk,
To answer your question on why would someone with normal erections benefit from taking a pde5 inhibitor?
I know you use yourself for a example also...if you had nerve injury from a radical prostate removal for prostate cancer and you are taking this and it didn't stop you from getting peyronies, but you also have stated the injections are the culprit...and also in your case the nitric oxide(anti-scarring agent) wasn't as present for someone who didn't have a radical prostate removal which cause nerve damage, although they do prescribe the taking of night pde5 inhibitors to this group to control scarring...
I posted on Priapism....after removing the blood from the penis they prescribe pentox/viagra or cilias/arginine to prevent collagen(scar tissue) from forming, one can still get erections(ones that last for hours:))...
The word you use *Normal* when you describe erections, night time or day time is I think where we look at this different.....I believe once you have peyronies you are not normal....I believe you have ED(erectile dysfunction)...by increasing ones chance of erections with a pde5 inhibitor and quality and duration of these erections which will provide more nitric oxide to nourish the penile tissue to help prevent collagen from increasing and to shut down inflammation to the area or prevent it to spread....
When Tim talked about Dr.Lue and the matting of the tissues...this is what I felt in the beginning, especially with the hour glass, I know that the lost of elasticity is the culprit, by the matting is there also and this is where the VED comes into play by apply pressure from the inside out, breaking apart also the matted area to allow blow flow to this damage area to heal...
I feel I have ED which they call peyronies....my unit has a dysfunction which can lead to further scarring....to help prevent this I need to keep blood flow to the tissue, and "exercise" the penile vascular tissue by doing this with pde5 inhibitor which causes blood vessel dilation, better blow flow, erections....second is by VED exercise to mold plaque and help increase the elastic property of the tunica and open up the matted area of tissue to increase blood flow to this area....arginine is also precursor to nitric oxide which is a benefit to this program also....
I don't like sound bites, I don't want headlines news, I know also that I go the long way around the barn to get my point across....
Summation:
We are not *NORMAL* we have ED(erectile dysfunction)....the more oxygen rich blood you can supply to your unit(circulation) the less scar tissue you will have....the report and studies on priapism prove this....
Levine believes that ED drugs prevent scarring, he states this on rats and people....he prescribes it to even young patience(which some are on this forum) with peyronies.... also with arginine and pentox....he doesn't see anyone's erection as myself to be *NORMAL* I can say my erections have not been normal since peyronies, I have a case of erectile dysfunction....
I think also that when you get peyronies you penis is prone to injury when you erection is soft and trying to penetrate, so some help in this area is good also with the pde5, sometimes prevention is the best medicine....or the medicine is the prevention....
Hawk I really did as you know also enjoyed talking live with you....and I thank you for the kind words...
God Bless...
Rico
Tim, thanks so much for the added insights. It is so easy to reduce things to simplistic formulas, but life does not tend to cooperate when we do that. You pointed out that, as is the case with many drugs AND supplements, Pentox has multiple effects via multiple pathways. So I admit that I probably focused to intensely on one of them. But I am really convinced, and I think this actually fits with what you stated, that some people get Peyronies because they just inflicted to much trauma on themselves in to short of a time frame, and others because they either have the misfortune of having a genetic propensity to scarring, and still others because they already have significant damage which is slightly below the threshhold of causing affliction and a trauma so slight as to be unnoticeable pushes them over the threshhold, and still others perhaps because their diet renders them vulnerable to uncontrolled inflammation.
My long term obsession in this whole degenerative syndrome area, including not only Peyronies, but also things like hypertension, is to discover those simple things that just ever so slightly tilt the balance in favor of healing. I am convinced that the right combination of such subtle influences can result in a cure and that perhaps it is just this that is behind the fact that some of us heal spontaneously more easily than others.
People often refer to 'spontaneous remission' as the reason why people get 'over' everything from cancer to heart disease. But I am convinced that these cases are more than mere acts of fate. Aside from the conviction that God can heal people by his sovereign power (Hawk, I hope you will forgive this transgression - feel free to strike it if it is over the top :)), I also believe that many mysteriously recover due to a subtle confluence of effects that we have yet to figure out. But if these effects could be discovered and harnessed, the benefits would be immeasurable.
This is one thing that I find frustrating with our modern day medical system and institutions. In our western society, doctors seem to be so busy just trying to put out 'fires', both physiological and psychological, that they have little time to ask questions and enter interesting data into outcome databases. It was just mentioned in the news just yesterday that many doctors are successfully diagnosing their patient's difficult issues using Google. Imagine! Here is the medical community finding success in resorting to the world wide web. Imagine what they could do if they had their own engineered database wherein each doctor recorded data on each patient which could then be subject to mass analysis by the research community and then the results fed back online to the docs on the front lines. Our system is just so dysfunctional, too bad, we could do so much better with a little imagination and creativity :'(.
- George
Quote from: Rico on November 11, 2006, 02:22:09 PM
Hawk,
The word you use *Normal* when you describe erections, night time or day time is I think where we look at this different.....I believe once you have peyronies you are not normal....I believe you have ED(erectile dysfunction)...
Rico, the issue is not what you believe, the issue is the facts and your statement is nothing but misinformation
QuoteI feel I have ED which they call peyronies....my unit has a dysfunction which can lead to further scarring....
Again, we are not here to discuss your feelings. That is for the "Psychological Impact" thread. We are here to discuss facts and we can not do so with such misstatements and improper definitions as are found in this quote.
Quote
We are not *NORMAL* we have ED(erectile dysfunction)....the more oxygen rich blood you can supply to your unit(circulation) the less scar tissue you will have....the report and studies on priapism prove this....
Who are you speaking for here? It cannot be for all the members because I know men with Peyronies Disease for 10 years that never had ED unless you are inventing a new term. If so maybe you can call it RED for Rico ED. This is another staement and total misinformation.
QuoteLevine believes that ED drugs prevent scarring, he states this on rats and people.....he doesn't see anyone's erection as myself to be *NORMAL* I can say my erections have not been normal since peyronies, I have a case of erectile dysfunction....
I think you just totally misrepresented a doctor to thousands of people.
Rico,
Words have real meanings. We can not all speak with our own individual vocabulary or assign our own private definitions to words and expect to communicate on this forum. We do NOT all have ED by any proper, established, medical definition of the term. That is absolutely false information. ED has already been defined. You or I do not get to give it our own definition. ED is the inability to naturally entrap enough blood in the penis to make it sufficiently rigid to sustain satisfying intercourse. Many men on this forum have no problem in that area. Just because one's penis is not "normal" in some other regard or they have some dysfunction, does not mean they have ED if they get erections rigid enough for intercourse. In fact, by definition it means they do not have ED. There is NO ED called Peyronies Disease as you state. Peyronies Disease can cause ED but often does not. Many people have ED that never have Peyronies Disease.
If we are to have any hope of educating and increasing understanding (a main purpose for this forum) we have to stop convoluting the entire discussion with such improperly used phrases
Can I be more blunt? Many men with Peyronies Disease get rigid throbbing erections. They do so only because their blood delivery system is fully functional. They do so because their blood delivery system dilates to full capacity and pinches on the venous blood draining system. To suggest that
these individuals would get greater dilation, or better erections, more blood, or more oxygen with a PD5 inhibitor is nonsense. There is more chance that they would get priapism that would deprive them of oxygen than an increase of oxygen. A 17 yr old kid that has on and off erections 18 out of 24 hours will not get more oxygen with a pd5 inhibitor, nor will anyone else, with or without Peyronie's if they already get sufficient rigid daily erections.
You also attributed this to Levine "he doesn't see any one's erection as myself to be *NORMAL* ". I do not believe any doctor would say no one's erection is normal or that a man with Peyronies Disease cannot not have a rigid erection, which has been the topic our last several posts. We have no license to put a doctors name on our thoughts just to make a point.
Show me a quote from Levine that indicates he thinks everyone with Peyronies Disease has ED. if you cannot, then delete your statement which implies he has made such a statement since it is irresponsible to misrepresent a doctor on this or any forum, and a very serious issue.
Let me make a quick comment or two.
I have had severe Peyronies Disease for about 8 years. I've lost about 2" in length and 50 percent in girth and have between an 80 to 90 degree upward bend from a large area of dorsal plaque from the glans to the base of the shaft. I have several solid nocturnal erections every night as well as normal arousal erections. They are not pretty, but they are very solid. In short, I have no ED whatsoever, and blood flow is excellent, so my Peyronie's has nothing to do with lack of blood flow.
Larry
Larry H, While my percentages of loss of length, girth & curvature are different than your experience, we are alike as far as nocturnal & arousal erections are concerned. My rigidity is so good that I could not consider taking Viagra for fear of doing some harm such as developing priapism. I don't feel that I have what is commonly defined as ED. I am considering the possibility of asking my Dr. to prescribe Pentox but am waiting for a follow-up report from Dr. Lue. I would not be taking Pentox for it's blood thinning abilities but instead for its reported effects on TGF Beta-1.
Hawk here you go as requested....
http://www.peyroniesassoc.org/
March 2006
Questions: ask the Doctor
ll. General Question
B. Question is about have peyronies for 2.5 years and his erections aren't as hard and if peyronies can come again, his pain is gone now....
Answer my Dr. Levine: Erectile Dysfunction is commonly found with peyronies disease. In *FACT* in my own practice, 90% of the men with peyronies disease have reported diminished erection!
He goes on to say why they mirror each other....also he says 50% say they started to have some ED before and 50% after, but 90% of peyronies in HIS practice do!
Mark501.....I hate to break the news to you, but the blood thinner or effect of that from taking the pentox is the reason for the TGF B1. The thinning of the blood makes for more blood flow which in turn supply's more oxygen to the wound which reduces inflammation and scar tissue.
Rico
Rico,
If you equate 90% with "he does not see anyone's erection as being normal" then it is clear where our communication breakdow lies.
You just confirmed that the previos statement you attributed to Dr. levine was false, and made my point. I thank you.
I have made it clear that my questions applies only to the ones that have "no trouble getting daytime and nighttime erections". You still fail to address those. I have no interest in talking about anyone but the ones you now admit exist.
Rico,
If you equate 90% with "he does not see anyone's erection as being normal" then it is clear where our communication breakdow lies.
You just confirmed that the previos statement you attributed to Dr. Levine was false, and made my point. I thank you. We are making progress even if it is painful.
I have made it clear that my questions applies only to the ones that have
"no trouble getting daytime and nighttime erections". You still fail to address those. I have no interest in talking about anyone but the ones you now indicate that Dr. Levine confirms to have no loss of erectile function. As well as those posting here with no loss of erectile function. This is starting to remind me of our exchanges when you were warning every one
against Pentox.
Quote from: Hawk on November 10, 2006, 03:24:53 PM
Rico,
1. Based on what you are saying that; Pentox is just the vehicle that causes the blood to deliver the oxygen and that it is the oxygen that is the bottom line no matter what gets it there.
Would you then conclude that;
2. A person with Peyronies Disease that has no trouble getting daytime and nighttime erections does not need pentox/arginine/viagra since their own system is delivering regular oxygen rich erections?
3. Would you say these natural erections (that furnish much more blood than P/A/V) will satisfactorily treat their Peyronies Disease by naturally getting rid of the TGFb1?
4. If you answered yes to number #3, wouldn't this mean that 22 year old guys that get an erection 10 times every day and night would not ever develop Peyronies Disease?
Rico, Quote me a credible source for your statement that the thinning of blood by Pentox is the reason for the positive effect on TGF-Beta 1. Be specific or else do not bother answering this post. Many drugs & natural substances thin the blood & what good have they done for patients with peyronie's? Again quote a CREDIBLE source.
Hawk,
I have said and will say again, I was wrong on Pentox...and my comments on it before where brought on by other things such as potaba, I admit that I was against drugs and have change my mind on this from research...oxygen rich blood is good for the penis...plan and simple...good circulation through pent ox, arginine, or induce erections with pde5 inhibitors or other supplements such as ginkgo or OPC's it is all good....synergy of the pentox/arginine/pde5 inhibitors seems to make sense and give a good delivery, and as George says a engineer punch.....
I started this to help people without the resources, like steve said, to ring the bell for our brothers, so with ginkgo and opc's being available and also arginine and pde5 inhibitors available on the net from Canada like ComeBackid order, they too can benefit from the increase blood flow and oxygen rich blood to there unit to curtail scar tissue and better erection quality....
God Bless...
Rico
Hawk,
I have to hang my hat on the 90% vs the 10%, and I would have to warn the 10% that without precaution they to could be in the 90% if they didn't take a proactive vs reactive approach to peyronies...
I would ask Tim to jump in on pentox ect.... he is are Doctor in the house.... do you think Tim to answer Mark501 question on pentox and if the thinning of the blood or the process of the delivery of oxygen rich blood through this thinning is the key to the tgf b1 effects....
Over and out:)....
God Bless all my brothers on this bless day!
Rico
Rico,
Apparently we should not be referring to Tim as "our" doctor in the house as you call it, see hawks message. Since I was very clearly made aware of this I'm passing it along to you, I don't want to be held responsible for starting this domino effect.
"Finally I want to address something I think Tim will support me in. You referred to Tim as "our doctor on the forum". Tim is a patient and a member of the forum and does not function as our doctor. He does not use his true full name, title, or, his credentials. He does not treat or prescribe for us. He investigates his own disease and shares his view as an educated person who is logically trying to attack a personal medical problem. I am very much in favor of getting some doctors on the forum that function as such, but in the mean time, as our registration disclaimer states, "the posts on this forum are made by patients with no medical training expressing their opinions unless otherwise stated." That otherwise stated would have to include a verifiable name, title, and credentials."
Personally I see tim as a fellow peyronies brother, who also happens to be a doctor. Because of this Tim is a huge asset to this forum with all his experience, knowledge of drugs, and access to medical research, not to mention the ability to interpret confusing studies.
ComeBackid,
I look at Tim as someone who makes sense of this nonsense!!!!
Rico
A quick note before work:
Pentox acts in many ways - in this realm, I believe it acts to reduce the production of TGF. I will point out again that Pentox does this in cell culture ("petri" dishes, for ComeBackid!), and so the effect of pentox is not related to blood flow or blood thinning.
Similarly, the viagra is not being given to "improve erections" although that may be a nice side effect if erections are not good. Viagra is given for it's effects on PDE5, which directly affects inflammation.
It is really important that people get it about this, IMHO. I have read a lot of flat out dumb misrepresentation of the pharmacology involved in the control of TGF. If TGF makes one make too much inflammation, then reducing it is important.
Now, that is not to suggest that erections are unimportant - they are important. And it is increasingly clear that the VED plays a role in helping heal from, or to retard the progression of, Peyronies Disease. "Real erections" may also be equally important. But it is really important that we not confuse the role of delivering oxygenated blood flow to tissue (always important) with the role of drugs that modulate an inflammatory cascade. They are not the same thing. It may seem simpler to equate them, but they are not the same.
Tim
I took my third 10mg of cilias last night, I have been doing it every 48 hours, for the first time in months(I have had peyronies for six months), I woke up to go the bathroom and my buddy was standing up like I never seen in months, I mean full wood that you could hang a towel on, man it is the little things that put a smile on a man's face....before the ciliais I would wake up with medium wood...erections weren't as strong....but like I said that one eye shrimp in the turtle necksweater was starring me in the eye, full helmet.....now that is something you can hang your hat on, Or towel:)...........
Rico
I am getting queries as to where to obtain the best grade of Vitamin E to deal with Peyronies. So I am going to attempt some suggestions in the form of links (and please don't take the order of the links as a ranking, I am NOT recommending one of these products above another):
From GNC:
http://www.gnc.com/product/index.jsp?productId=2133477&
From Vitamin Shoppe:
http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=SO-1759
http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=KA-1756
From iHerb.com:
http://www.iherb.com/store/ProductDetails.aspx?c=Herbs&pid=NOW-00811
From Natural Supplement Center:
http://store.nationalsupplementcenter.com/mf20011.html
From Nutrition Surplus:
http://www.nutritionsurplus.com/index.cfm/FuseAction/Shopping.ProductDetails/productid/17745.html
All of these SEEM to be good products. Some of these vendors have retail outlets in addition to their web stores. This is by no means an exhaustive list. In the past I have used the NeoMedica product available from Nutrition Surplus. I am now using the NOW Foods product from iHerb.
- George
George,
I know you have talked a lot about the full spectrum vitamin E and other supplements, I'm actually a supporter of some supplements and good excercise. But on the other hand I'm a skeptic, in regards to the vitamin E or full spectrum vitamin E is there even one study showing a positive effect on peyronies patients? If so could you post it please. I've looked at the PDI site, and my skepticism kicks in after I learned they have a store and sell different vitamins and products. I do know one member here from the PDS that claims to know the owner of the PDI site, and claims to be in his book that was recently published, even this fellow didn't seem convinced full spectrum vitamin E will do the trick. I've talked to countless men who said they took vitamin E and it didn't do a thing, I myself was on it for almost a year, after awhile to much vitamin E is dangerous as it can cause coronary artery disease. I think it could help bolster PDI's sales and credibility if they sponsored a study by a reputable doctor with their full spectrum vitamin E.
If one accepts the idea that ischemia, that is oxygen starvation, promotes the production of TGF-beta-1, then one would have to conclude that ANY substance, including Pentox, would lower TGF-beta-1 simply by virtue of the fact that it improves circulation and oxygen utilization. However, I think that what Tim is trying to point out *Tim, please correct me if I am wrong on this* is that Pentox NOT ONLY lowers TGF-beta-1 indirectly via improving circulation, but also lowers TGF-beta-1 DIRECTLY via a different and more effective pathway. I think this is a really important distinction, since otherwise one could attribute TGF-beta-1 lowering qualities to any number of substances and perhaps in doing so, risk missing out on the very real additional benefits of a drug like Pentox which is not only 'more powerful', but simply more effective through the use of additional pathway(s) to achieve the desired effect.
On the subject of PDE-5 inhibitors (Viagra, etc.), I think it is also worthwhile to point out that serum nitric oxide levels are a whole different animal than the nitric oxide factor involved in erections. Tim touched on this also, but I think it is important to reiterate. What we need to achieve in order to attack the Peyronies is to increase nitric oxide levels in the blood stream when the penis is in its flaccid state which is when that nitric oxide will hopefully be able to deliver its punch to the capillaries of the compromised tissues themselves. As Tim pointed out, erections have their own value, but actually cut off the circulation that is therapeutic to the damaged tissues. This is an area where I suggest that exercise can indeed be helpful increasing nitric oxide levels in the bloodstream over a prolonged period. And I can only imagine that this effect would be multiplied by the addition of Pentox/Viagra/Arginine. So while erections are a good thing, what we really need to do is use those substances to increase the delivery of nitric oxide and oxygen to the damaged capillaries that are really only accessible in the flaccid state.
Just my thoughts on the subject.
- George
ComeBackid, as far as I know there are no studies to either prove or disprove the effectiveness of Vitamin E when it comes to treating Peyronies. In my case (as in most cases) the Uro 'prescribed' it. There are theoretical reasons why Vitamin E SHOULD BE effective, especially in the early stages of Peyronies. Vitamin E is a very powerful fat soluble anti-oxidant, and anti-oxidants are a key weapon against fibrosis in general. There are studies out there that indicate this to be true. As far as natural E as opposed to synthetic E is concerned, there are studies showing that natural E is significantly more effective than synthetic E. That is exactly why Vitamin E is measured in IU as opposed to mg. It take more synthetic E in mg to equal the same effective amount when compared to natural E. It has also been demonstrated through research studies that synthetic E tends to be VERY poorly assimilated. In fact there is research that indicates that some people taking synthetic E end up with absolutely zero E in their bloodstream. Natural E has been shown to be far more easily assimilated and more effective. My argument for broad spectrum E is more subjective. Before ever reading anything on the subject, I made a change from natural E to natural E plus mixed tocopherols. I immediately noted an improvement in effectiveness. After that, I began reading up on it, including the info on the PDI website and moved on to the broad spectrum product which I am not even buying from PDI anymore. In fact I am using a completely different brand now as I pointed out in my post below. But I later discovered that one of the early users of the pentox therapy noted in a post on this website that he was also using broad spectrum E. So, knowing what I know, I can only recommend that if one is going to use Vitamin E at all, they should not be using the cheap synthetic stuff, but rather the best stuff out there and that would be one of the premium "broad spectrum" products.
On the other hand, I can fully understand why you and others might not want to use Vitamin E at all and I have no problem with that. I don't own any stock in the vitamin E industry and in no way profit from its sales, nor am I in any way connected with the PDI website other than the fact that I have made some purchases from them. In fact, my most recent purchase from them was a huge bottle of Neprinol which is now collecting dust in my closet because I have come across some interesting research that calls into question the whole enzyme based anti-fibrotic approach to treating fibrosis. So Vitamin E is in no way sacred to me aside from the fact that I have personally found it more helpful than anything else in treating my condition (and I take a lot of stuff) and thus recommend it to others on that basis and on the points that I presented in the above paragraph.
As for the research questioning the safety of Vitamin E, I have read much of that also and personally find it very flawed. In the first place there has been absolutely no research comparing the relative effectiveness or relative safety of synthetic E compared to full spectrum natural E. There is actually some evidence suggesting that synthetic E upsets the balance of E in the body by causing a deficiency of the other tocos. It is also a known fact proven by research that Vitamin E depletes Vitamin K and will leave one with a pronounced Vitamin K deficiency unless Vitamin K is also supplemented concurrently. Yet NONE of the Vitamin E studies took this into account. They instead just blindly supplemented with synthetic E and in light of the above facts, a detrimental effect is not surprising. In fact, research has shown that Vitamin K deficiency can cause vascular calcification not to mention bleeding disorders, so duh! , the really surprising thing to me is that those studies didn't show Vitamin E to be far more dangerous than they did. Personally, I think anybody taking high levels of E without integrating K into that equation is asking for trouble. I take K with the E and have lately been taking 1600 IU of d-alpha-tocopherol a day plus the additional tocos and have yet to have any obvious side effects. I don't plan on pushing my luck by doing that over an extended period, but with the research knowledge I have accumulated, I am not particularly concerned about it either. And my observation thus far has been that my Peyronies has responding definitively and positively to that increased dosage. So I intend to pursue it further and am excited about the potential outcome.
- George
George999,
Very interesting post on the vit E. I am currently taking 400IU of natural full spectrum vit E 3 times daily(1200IU total) and did not know about the vit K connection. If I was to take this also, should it be the same qty as the E to offset that. I have not read about this anywhere else. crs
George:
I think you made some good points, I do wonder why Dr. Lue recommends one to maintain a erection in the evening for 10 minutes, what is the purpose of this?
I talk to my doctor(urologist) today, he read my reports and he and his staff found the information very interesting, he made copies for everyone, this help me in having a discussion with him with a open Mind.....He said, they all know of Dr. Lue and consider him the leader in Erectile Dysfunction....with his endorsement of pentox, he feels it is something to try.....
I order 270 tabs of pentox(trental) and 30 tabs of 20 mg of cilias.....it is waiting at the drug store for me, will pick up on way to work tomorrow.....anyone need some ginkgo:)...... I will stop my supplements other than 400mg of full spectrum E and a multi...... I doing 10mg of cialis every 48 hours, my arginine once aday before my run at lunch no-d2t it is 4000mg time release......
I have a iron gut so I don't see any problem with the pentox and have notice no side effects from the cilais..... I haven't checked how much my insurance is going to pick up on this, should cover most of the trental, it is off label use, Blue Cross Blue Shield in my policy doesn't cover ED....I will see, if one was going to pay out of pocket no insurance it is about 150 dollars a month program...including all three products..... my supplements run that much so it is a wash from a cash flow prespective....
I felt the respect my Urologist has for Lue was a good thing..
Rico
The studies:
QuoteEffect of vitamin E supplementation on vitamin K status in adults with normal coagulation status.
* Booth SL,
* Golly I,
* Sacheck JM,
* Roubenoff R,
* Dallal GE,
* Hamada K,
* Blumberg JB.
Jean Mayer US Department of Agriculture Human Nutrition Research Center on Aging, Tufts University, Boston, MA 02111, USA. sarah.booth@tufts.edu
BACKGROUND: Cases of enhanced anticoagulant effect in response to high-dose vitamin E supplementation have been reported among patients taking oral anticoagulants. Although a vitamin E-vitamin K interaction was proposed to underlie this effect, it has not been systematically investigated in adults with normal baseline coagulation status. OBJECTIVE: The objective was to study the effect of 12 wk of supplementation with 1000 IU RRR-alpha-tocopherol/d on biochemical measures of vitamin K status in men and women not taking oral anticoagulants. DESIGN: Vitamin K status, which was assessed with the use of plasma phylloquinone concentrations, the degree of under-gamma-carboxylation of prothrombin (proteins induced by vitamin K absence-factor II, PIVKA-II), and the percentage of undercarboxylated osteocalcin (ucOC), was determined in 38 men and women with rheumatoid arthritis (study A) and in 32 healthy men (study B) participating in 2 independent, 12-wk randomized clinical trials of vitamin E supplementation (1000 IU/d). RESULTS: Mean (+/- SD) PIVKA-II increased from 1.7 +/- 1.7 to 11.9 +/- 16.1 ng/mL (P < 0.001) in study A and from 1.8 +/- 0.6 to 5.3 +/- 3.9 ng/mL (P < 0.001) in study B in response to 12 wk of vitamin E supplementation. An increase in PIVKA-II is indicative of poor vitamin K status. In contrast, the other measures of vitamin K status (ie, plasma phylloquinone concentration and percentage of ucOC) did not change significantly in response to the supplementation. CONCLUSIONS: High-dose vitamin E supplementation increased PIVKA-II in adults not receiving oral anticoagulant therapy. The clinical significance of these changes warrants further investigation, but high doses of vitamin E may antagonize vitamin K. Whether such an interaction is potentially beneficial or harmful remains to be determined.
PMID: 15213041 [PubMed - indexed for MEDLINE]
QuoteExtrahepatic tissue concentrations of vitamin K are lower in rats fed a high vitamin E diet*.
* Tovar A,
* Ameho CK,
* Blumberg JB,
* Peterson JW,
* Smith D,
* Booth SL.
Vitamin K Laboratory, Jean Mayer USDA Human Nutrition Research Center on Aging at Tufts University, Boston, MA, 02111, USA. sarah.booth@tufts.edu.
ABSTRACT: BACKGROUND: An adverse hematological interaction between vitamins E and K has been reported, primarily in patients on anticoagulants. However, little is known regarding circulating levels or tissue concentrations of vitamin K in response to vitamin E supplementation. The purpose of this study was to examine the effect of different levels of dietary alpha-tocopherol on phylloquinone and menaquinone-4 concentrations, while maintaining a constant intake of phylloquinone, in rat tissues. METHODS: Male 4-wk old Fischer 344 rats (n = 33) were fed one of 3 diets for 12 wk: control (n = 13) with 30 mg all-rac-alpha-tocopherol acetate/kg diet; vitamin E-supplemented (n = 10) with 100 mg all-rac-alpha-tocopherol acetate/kg diet; and vitamin E-restricted (n = 10) with <10 mg total tocopherols/kg diet. All 3 diets contained 470 +/- 80 mug phylloquinone/kg diet. RESULTS: Phylloquinone concentrations were lower (P </= 0.05) in the vitamin E-supplemented compared to the vitamin E-restricted group (mean +/- SD spleen: 531 +/- 58 vs.735 +/- 77; kidney: 20 +/- 17 vs. 94 +/- 31, brain: 53 +/- 19 vs.136 +/- 97 pmol/g protein respectively); no statistically significant differences between groups were found in plasma, liver or testis. Similar results were noted with menaquinone-4 concentrations in response to vitamin E supplementation. CONCLUSION: There appears to be a tissue-specific interaction between vitamins E and K when vitamin E is supplemented in rat diets. Future research is required to elucidate the mechanism for this nutrient-nutrient interaction.
PMID: 16857056 [PubMed - in process]
Full abstract here:
http://www.nutritionandmetabolism.com/content/3/1/29 (http://www.nutritionandmetabolism.com/content/3/1/29)
Note this quote from the above:
QuoteHigh doses of vitamin E administered to vitamin K-deficient animals result in abnormal coagulation as a consequence of under y-carboxylation of prothrombin, whereas there is no effect of vitamin E supplementation in vitamin K-adequate animals
Also:
From: http://www.whfoods.com/genpage.php?tname=nutrient&dbid=111 (http://www.whfoods.com/genpage.php?tname=nutrient&dbid=111)
QuoteAn exception to the generally low risk of toxicity associated with vitamin E involves simultaneous vitamin K deficiency. For persons with vitamin K deficiency, high intake of vitamin E can prolong bleeding time and interfere with clotting. In 2000, the National Academy of Sciences set a Tolerable Upper Intake Level (UL) for vitamin E of 1,000mg (or 1,500 IU of vitamin E in the form of alpha-tocopherol). This daily limit applies to supplemental vitamin E only, and is intended to apply to all individuals age 19 and older.
Also note the effect of Vitamin K on calcium metabolism:
QuoteEffect of vitamin K2 on experimental calcinosis induced by vitamin D2 in rat soft tissue.
* Seyama Y,
* Horiuch M,
* Hayashi M,
* Kanke Y.
Dept. of Clinical Chemistry, Hoshi College of Pharmacy, Tokyo, Japan.
The effect of vitamin K2 on calcium (Ca) and inorganic phosphorus (P) levels in the aorta and kidney obtained from experimental calcinosis induced by vitamin D2(2.5 x 10(5) I.U./ kg b.w.) of male rats was investigated. A high dose of vitamin K2 (100 mg/kg b.w.) inhibited the increase in the aortic Ca and P or in the renal Ca and P induced by vitamin D2, and a low dose of vitamin K2 (10 mg/kg b.w.) showed the same tendency, but the degree of the efficacy was small. It may be suggested that a high dose of vitamin K2 suppressed experimental calcification of soft tissues induced by vitamin D2. Therefore, a pharmacological dose of vitamin K2 might have a usefulness for the prevention and treatment of arteriosclerosis with calcification.
PMID: 8698544 [PubMed - indexed for MEDLINE]
QuoteMatrix Gla protein accumulates at the border of regions of calcification and normal tissue in the media of the arterial vessel wall.
* Spronk HM,
* Soute BA,
* Schurgers LJ,
* Cleutjens JP,
* Thijssen HH,
* De Mey JG,
* Vermeer C.
Department of Biochemistry, Maastricht University, Maastricht, The Netherlands.
Vitamin K-dependent matrix Gla protein (MGP) has been suggested to play a role in the inhibition of soft-tissue calcification. Here we report the expression of recombinant prokaryotic MGP as part of a fusion protein and the preparation of two antibodies that specifically recognize MGP. Monoclonal antibodies were raised against synthetic peptides homologous to the sequences 3-15 and 63-75 of human MGP. Both antibodies recognize recombinant and synthetic human MGP. Immunohistochemical analysis showed that MGP was associated with the extracellular matrix of noncalcified bone and with chondrocytes in cartilage. In the healthy human arterial vessel wall, MGP antigen was demonstrated in association with smooth muscle cells and elastic laminae of the tunica media and with the extracellular matrix of the adventitia. Colocalization with the elastic laminae was lost at sites of medial calcification; in both human and rat arteries, high amounts of MGP were found in the extracellular matrix at borders of intimal and medial calcification. Our data demonstrate the close association between MGP and calcification. It is suggested that undercarboxylated MGP is biologically inactive and that poor vascular vitamin K status may form a risk factor for vascular calcification.
PMID: 11716499 [PubMed - indexed for MEDLINE]
http://www.lef.org/magazine/mag2000/feb00-report.html (http://www.lef.org/magazine/mag2000/feb00-report.html)
The preferred form of Vitamin K is Vitamin K2, but Vitamin K1 is also OK. Vitamin K3 is toxic. People who take Coumadin or who are on dialysis should not take Vitamin K supplements.
- George
PS - I tried to post more references to actual studies, but the urls apparently contained character strings that caused me to get a reject message when I attempted to include them in the post. I have since included the abstracts themselves in quotes.
Rico, I think that there is a general, though perhaps not universal, perception in the medical community that regular erections are beneficial to penile health. There has to be some reason that healthy males have regular nocturnal erections. But I would suggest that this benefit is separate and distinct from the vascular heath benefits provided by Pentox, Viagra and Arginine, which is what is really impacting the Peyronies.
- George
George,
I largely share your view but it leaves many unanswered questions. This discussion was my point for singling out those large number of Peyronies Disease patients that do get substantial, regular daytime and night time erections. I wanted to discuss that; with them, more frequent, erections, erections of longer duration, or more firm erections were not desired. For them, the pentox/arginine/viagra (p/a/v) was to impact the Peyronies Disease through channels quite separate from oxygen that results from erections if it were to have ANY effect. In fact we know that an erection for more than the optimal time, actually begins to deplete the tissue of oxygen probably as soon as one hour (my guess).
So the P/A/V would either work through a path unrelated to increased blood flow as expressed in erections or it would be of no use to this group.
I am still not sold on this because i do think there is ample evidence that a lack of erections can result in fibrosis. This in fact could be the common increased risk factor with all of the classic groups (diabetics, prostatectomy, over 50)
On the other hand, I also see evidence that an abundance of erections will not prevent fibrosis.
While It may be posted somewhere in the heap (at least in pieces), I would like to see this cooked down to the specific role erections play in penile health and the limitations of that role. As I mentioned, it needs to cover the role of p/a/v independent of erections and the role of erections.
Surely part of the answer lies here: https://www.peyroniesforum.net/index.php/topic,130.0.html
I think we all have uneducated ideas, pet theories, and little analogies that may or may not apply, but I suspect that information is not yet full understood by any group. If it is an unknown, we probably won't be the ones to discover it. Arguments of unproved theories help little IF THIS IS THE CASE.
This disease and much about the the basic physiology of the penis seems to remain a mystery. The fact that many men have physiological reasons they can get nocturnal erections but not daytime erections even with Viagra seems still to be unsolved. In fact it has only until recently, these cases were assumed to have a psychological basis.
This post should probably go under "Causes of Peyronies Disease"
QuoteI am still not sold on this because i do think there is ample evidence that a lack of erections can result in fibrosis.
One has to be careful here. Another possibility is that there is something going on in the vascular realm that is the ultimate cause of BOTH lack of erections AND fibrosis. So while we agree that erections are a healthy AND very normal phenomenon, I would say that what is most important (and I think we agree on this as well), whether one is able to have normal erections or not, is to work on the vascular side with the PAV combination. I would personally run by my doctor the possibility of adding to that Vitamins C, E, and K, concurrent aerobic exercise routine, and possibly something like Flavay, the quintessential OPC/pygnogenal combination, and the only such product with years of research behind it and some pretty remarkable capabilities, and my reasoning for that is that once you get oxygen and nitrogen going in a big way, you also want to be looking at quenching resulting increases in destructive free radicals and this is pretty much the formula for doing that.
- George
QuoteOne has to be careful here. Another possibility is that there is something going on in the vascular realm that is the ultimate cause of BOTH lack of erections AND fibrosis.
George,
I think we are still guessing because, with prostatectomy patients the nerve bundle that triggers the dilation of main penile arteries is impacted. Nerves dealing with sensation are untouched. There is no evidence that any other vascular issues are impacted.
But then again, it could be trauma from catheterization
Ah, but we are still guessing
Quote from: Rico on November 13, 2006, 03:41:51 PM
George:
I order 270 tabs of pentox(trental) and 30 tabs of 20 mg of cilias.....it is waiting at the drug store for me, will pick up on way to work tomorrow.....anyone need some ginkgo:)...... I will stop my supplements other than 400mg of full spectrum E and a multi...... I doing 10mg of cialis every 48 hours, my arginine once aday before my run at lunch no-d2t it is 4000mg time release......
Rico??
Are you giving up on the ginkgo? I thought this was working for you?
fighter,
I like the ginkgo and it has worked for me for blood flow and better circulation... I really like it... if I start the pentox, I don't want to do ginkgo with it and have read not to mix the two....
I have talk to some people tonight about mixing the VED with pentox and it being a blood thinner... I have to admit this now has given me some concern...
I will sleep on it tonight, I might just take the cialis and arginine and ginkgo and finish my VED.... I like the VED... I haven't read anything about doing pentox with the VED, one person told me it gave him red dots on his unit and another veteran of ved told me maybe I should just do the VED and finish with it....
I can't say anything but positive things about the ginkgo...I have been holding a steady course for the last several months and feel I have had positive results....to tell you the truth I'm taking two of the three right now and have seen studies on ginkgo and pentox being compared, but I don't know it it would make much of a difference, but I do know the top peyronies doctors are prescribing it....I get scared because I'm in the six month stage of peyronies and want to take advantage of everything I can and not leave anything on the table....I would only change one thing, replace my ginkgo with pentox...and once again this is just because it is what Lue and Levine are prescribing....I don't like drugs and it is a hard choice for me to make....
I haven't talked to anyone that has gotten better from pentox myself...I do know after taking ginkgo for several weeks I could feel more warmth in my hands and feet, better blow flow....Once again I like ginkgo, one article said a man went into a coma taking pentox and ginkgo, it was the only article I read to say not to mix the two once again.... to tell you the truth I think I have been reading too much on peyronies...six months for hours everyday....one can talk hisself into things, sometimes your gut or street sense is the best bet......
Right now I believe in everything I'm doing, ved, diet, exercise, agrinine, and a pde5 inhibitor.... I take opc'c and a full spectrum E... opc's are great..... I will stay this course.... trade of pentox for ginkgo??????? I don't know, maybe I will just pick up the cilias tomorrow... I have to sleep on it.... I know if I wasn't pumping and didn't believe so much in the VED then I would switch pentox for ginkgo for the fact once again there is more research I can follow on it with peyronies...... I have concerns now with the pressure from the VED and thinning my blood too much.... pentox is a engineer drug that reshapes your blood cells....state of the art blood thinner...
Anyone with any thoughts on this combo ved/pentox please speak up...
Rico
Rico,
I think you say it right here... "I think I have been reading too much on peyronies...six months for hours everyday....one can talk hisself into things, sometimes your gut or street sense is the best bet"
Sometimes we tend to change treatments too fast because we read something and the next thing you are ordering it. I have done this myself and I am sure that most of us have also. As a matter of fact I promised myself that I would not do that anymore. But you know what? It is hard to ignore the different things that you read and you just think that maybe just maybe that is the answer so you make a change. My Peyronies Disease has been in check for about 6 months and I just ordered Ginkgo because I have been reading a lot of good things about it. I have also noticed that someone will post good results on the forum about a certain drug or supplement and then a week later he is trying something different? I guess we just want this all to be over with and we are willing to do just about anything? Keep on fighting...
fighter,
You will be happy with ginkgo....I have stay the course with my decisions so far.....drug interaction, ginkgo and pentox.... they are tested against each other also, more for someone that wants to go a more natural route, ginkgo has actually out performed pentox in some areas.....
Personally I don't know if changing this one thing in my program will do anything.... I'm just piggy backing on some of my brothers who are going to more pro active peyronies doctors........I think this is a big problem with peyronies, urologist don't have a clue what is going on....My urologist yesterday kept me on the phone, I told him I knew he was busy, he said oh I'm not charging you for this and can I ask you a couple more questions....he has been the head doctor at a top firm for 15 years in a large city.... potaba and topical verapamil is the clinics choice or operation..... he says injections hurt and are hard to do..... this is a problem also they will have to over come with aa4500... administration of the drug....although if it works, people will find a way to get to someone who can stick you....
My real problem for me is buckling, at the hour glass site, it buckles forward, or hinges.....will these drugs help with this??? I think the VED can help, we will see.....I'm single but did have some sex the other night and it was a little awkward, but I think the gal just thinks your a little soft, you have to hold it by the hinge, when very hard erection with the cilias then it seems much better, firm, a towel holder:).... in the report by lue also there was no improvement in the hour glass with the pentox study, bend yes and dorsal plaque good, side plaque same.....I thought this is positive.... it would of been hard for me to imagine a strong erection at the base for a inch up and another four inch strong and in between for a inch narrow and hinge forward.....stronger erection, less hinge....too me one seems to me more apt to injury his self during sex also, I found this out....the buckling makes your unit dig once in a while, I was nervous that I might of injury myself, after she left I didn't have pain but took precaution and ice my unit and apply some dmso to prevent blood pooling and took some naid......my thoughts are during rehab with the VED.... taking the pentox/pde5 inhibitor of choice and arginine one might curtail any other scarring if you re-injured oneself, since this is what they feel this combo does....
fighter you feel your injury is in control, you will like the ginkgo, better circulation, it takes a while to start working, take 60mg twice a day......it is one of the few supplements doctors know about....all good.... just don't take with Pentox:).... I will go back to ginkgo when off of pentox....just for over all health....
Rico
I really think the problem here is that Pentox and Ginkgo have some similarity in that way that they work and if you take the two together it can result in a dangerous "overdose", if you will, in terms of a certain aspect of the treatment. These are just the kind of things that people die from. The warnings are not to mix the two. It is not that either one of them are bad. It is the mixing of the two that are the problem. Ginkgo is a supplement with pharmaceutical qualities and Pentox is a drug. Of the two, Pentox is stronger, more predictable, more targeted, etc. If one wants a Ginkgo 'effect' at its highest effectiveness, one should be looking at moving off of Ginkgo and onto Pentox. Hope that makes this discussion more clear.
- George
Just got back from Walgreen's $277.34
My Insurance would only give one month or 100 tablets of pentox at a time...My cost 10 dollars.... they don't cover cilias 20 tablets of 20mg where 261.89 dollars.... pill cutter 4.99
The pentox wasn't trental, it said replaced with ER tablets my quest generic pentoxifylline, it did say pentoxifylline on bottle, smaller white, easy to take 400 mg....just took one...
the cilias is 3.27 a day taking 10mg every 48 hrs and 30 cents a day for the pentox.... the expensive arginine I'm taking is 2.25 a day(this will change now).... I don't feel I need much more that a bulk arginine taken with pomegranate, so the replacement will off set the cost of cilias, ginkgo is cheap, but since I have insurance, I can't beat the price on pentox at 10 dollars for 100 tablets....
Now once was breaks the cilias down to 5mg every 48 hours then you are cutting cost again in half.....I know the dose is cut by misterb in the second month....he states his program from Dr Levine when he rang the bell for the brothers on the forum....I thank you again for this is the information that formulated my prescriptson....
Now if one wants to go on line and order and go generic like ComeBackid, then there can be more saving..... IN the second month one should be at a couple of dollars a day.....I know also pentoxifylline in generic is pretty cheap, so no insurance you would have to add in this less 10 dollars...
George you are right as in explaining the pentox and ginkgo....they warn about using with other blood thinners also, I think this is common sense..... too much over lapping..... I do know or should say have been told that pentox has a Special Secert Ingredient In It....no one knows what it is, and it has nothing to do with the velocity of blood cause by the changing of the cells which in turn creates better circulation and bring oxygen rich blood to the small vessels such in the tunica and surrounding plaque...It's Magic:):):)!!!!!!!!!
Rico
Hi all,
I'm trying to put together some supporting info on the p/a/v "cocktail" for my Uro, and apart from a little bit in Dr. Levine's q&a site, and a report by Dr. Kendirci to the 2005 AUA from the SMSNA site, don't have any hard data on dosages being used. Could not find anything from Dr. Lue on this. Can anyone steer me in the right direction? Thanks. crs
csup,
misterb put his program down, which you can read down a few post...... if you are taking viagra 400mg pentox x 3 per day arginine 500mg x two or three and 25mg of vaigra taken at night....
I'm taking the cilias 10mg every 48 hrs and the rest is the same..... now misterb reduce his cilias to 10mg every three days after a month and then to a lower does, I think twice a week, you can check his post....if you go to his name on member list you hit last post of his and can read them all....
I bought 20mg cialis and a pill cutter.... the reports you are brining are good, this is what change my doctors mind, and maybe my own also....let you know in three months:)...
Rico
There is a very nice review of the recent non-invasive medical literature in a recent issues of European Urology:
1. A Critical Analysis of Nonsurgical Treatment of Peyronie's Disease
European Urology, Volume 49, Issue 6, June 2006, Pages 987-997
Ekkehard W. Hauck, Thorsten Diemer, Hans U. Schmelz and Wolfgang Weidner
Among the findings they summarize (largely from double-blind placebo controlled randomized studies):
Potaba helps in keeping things from getting worse. Acetyl-L-carnitine helps, but only some. Tamoxifen and Colchicine don't help. Topical verapamil does not penetrate the skin. Iontophoresis seems like it sometimes works.
Personally, if you try potaba, make sure to go with the powder, not the pills. The pills made me nauseas 100% of the time, whereas the dissolved powder just tastes bad.
It may be useful to post this to the articles/resources portion of the forum, but I am not sure of copywrite issues.
JW
Thanks for this - it seems a good review
Percival
I went to see my GP for non Peyronies Disease issues today and we ended up discussing my condition. I got him to write me scripts for Pentox 400mg x 3/day, and Viagra @ 100 mg. I know about Dr. Lue's protocol on the pentox and arginine, but I am not sure about daily dosage on the viagra. My doc and I talked about cutting the pills into 1/4's, but then I saw that Rico is only taking 10 mg of cialis every other day. Does anyone have input on the dosage for the sildenafil portion of this trio. Thanks. crs
csup,
10 mg of cialis is like 50 mg of viagra....cialis is more time release so that is why one takes only every 48 hrs..... so if you take 25mg of viagra a night then you will be following the protocol......
Rico
Keep in mind the following. The maximum dose for :
Viagra is 100mg
Cialis is 20 mg
Levitra is 20 mg
in other words 10 mg of Levitra or Cialis is the equivalent of 50 mg of Viagra or 1/2 of a maximum tablet of either drug. Cialis has a much longer half-life and stays in your system longer.
PS: Rico must have posted when I was typing this but it may add something.
Dear Forum members and guest:
I just posted that my stomach was upset from pentox....it wasn't in the morning or night, just when I took it in the afternoon....I thought maybe the morning and afternoon dose now mixed was too much......I just tried my arginine by itself, now I had switched brands for xyience to No-D2t by biogenetix, it is time release, now reading the label it says, take six tablets(horse pills) 4000mg two hours before workout....xyience was half hour before and you mix it with water and drank it, I was working out to early and throwing these horse pills down on a empty stomach....I have to adjust this....so it wasn't the pentox I now believe it was the arginine(new brand) that I'm taking and not taking it properly.....
Rico
Of all of these meds, supps, etc. I have found Arginine to be just about the most cantakerous to deal with. Its one of those things, that when it works, its like magic, and when it doesn't, its a pain (*literally*).
George
Thanks to Rico and Hawk for the heads up on the sildenafil dosage comparisons. Picked up the viagra tonight. Used a very fine tooth saw and miter box for model building to cut these into 1/4's. What a pain in the fingers (and elsewhere). If they work though, it is all worth it.
Rico, I also found some time release arginine thru Life Fitness. They are 1000mg capsules that are supposed to last 12 hours. My local CVS pharmacy (Michigan chain) has them for $35.00 for a bottle of 120. (They are running a sale where you get the 2nd bottle at 50% off now thru 11-25-06). I'm sure you could find these online.
I will have to wait about a week to start the whole protocol, as I had to mail away for the pentox in order to get a price break. I am very fortunate to have good ins. Still undecided about addind VED to the regimen. That is not covered under ins. until I meet a healhy deductable amount. Best wishes to all. crs
To Hawk's list, I would add that Horny Goat Weed standardized for 10% Icariin is effective at about a 100:1 ratio to Viagra. In other words, it would take 10g of Horny Goat Weed to produce the same effect as 100mg (max dose) of Viagra. And there are in fact 1g HGW tablets on the market now. At this point I am taking between 1.5g and 3g a day, I plan on boosting that to 2g to 4g per day soon.
- George
George
Your comparison between Viagra and Horny Goat Weed is interesting. I have tried the latter and found it as much use as a chocolate fireguard. The dose stated on the label is:
"Epimedium brevicornum extract - equivalent to whole herb 1000 mg"
The recommended dose of this is 1 - 4 tablets. Even the max dose does nothing, whereas 100 mg Viagra does the trick. Maybe I need to try a different brand of HGW.
Percival
I take 500 mg of HGW 2X per day. It also contains 300 mg MacaPure (trademark maca) It does nothing for me that I can tell.
I also think I got no effect from "korean white gensing" I may try the red just for comparison.
Rico (and everyone else),
Pentox needs to be taken with food. Rico, if you took your afternoon dose on an empty stomach, it very well could have been the pentox that upset your stomach.
My pharmacy puts a label on the bottle indicating just that fact....
The main issue with Horny Goat Weed is that it needs to be "std 10% icariin" and should state so on the label. Icariin is the active ingredient, the effectiveness of icariin having been demonstrated to be 10:1 to Viagra. So,
Percival, if you are taking 4 tabs, assuming they are indeed 10% Icariin, you should be getting the equivalent of 40mg of Viagra which is actually less than half of the effectiveness of the 100mg of Viagra. So it might well be that the HGW is just not doing it for you or, on the other hand, it may have something to do with the dosage. Personally, I think that if one is not getting the needed effect from HGW, they should be moving up to the prescription solution whether that be Viagra or Ciallis if at all possible, so I think you are on the right track.
Hawk, you are at 1g of HGW which would equal 10mg of Viagra, less than half the minimum dose. I really don't think that would have any real effect.
ANOTHER IMPORTANT ISSUE WITH SUPPLEMENTS! ALWAYS check the "Serving Size" first. I actually have a HGW product that states its potency to be 500mg. However, it states the "Serving Size" to be 2 capsules. You then discover that the 500mg is the amount per serving. Thus you think you are getting 500mg and you are actually only getting 250mg. This is true with ALL supplements. Be VERY CAREFUL and check the label!
- George
While we are on the subject of things to watch out for in supplements, I would also mention Ginkgo. Ginkgo leaves (from which the ginkgo supplement is extracted) sometimes contain ginkgolic acid. Ginkgolic acid is toxic and dangerous. The more reputable Ginkgo manufacturers TEST the leaves for ginkolic acid before using them to make the extract or powder. Those leaves that don't meet the requirements are shunted to the secondary market where they are often purchased by 'less fussy' vendors who proceed to use them in their products. In Europe, particularly in Germany, Ginkgo is strictly regulated in terms of allowable ginkolic acid. This is not so in the US. So when you buy Ginkgo, CHECK THE LABEL FIRST. It should say something like "contains less than 5ppm ginkolic acid". If it doesn't disclose the ginkolic acid content, beware! So far I have discovered two widely available brands that do disclose ginkolic acid content to be at a safe level. They are Life Extension and Nature's Herbs. Others are perhaps Syntrax Radox, and perhaps a few other lesser known brands. Shockingly, many major brands do not disclose this important safety information. We should support the vendors that do.
- George
I'm in the middle of reading The Hardness Factor by Steven Lamm and thus far it's very good. One of his initial recommendations is to take Pycnogenol along with L-Arginine. I did a search on "Pycnogenol" hear on the forums and the results were very encouraging so I think I'm going to give this a shot. I was looking into Prelox which was one of his suggestions but I can't seem to find any info about the amount of L-Arginine vs. Pycnogenol in the product. I hate when companies do this...
So I'm thinking of just rolling my own. Is there a recommended dosage for Pycnogenol? Any other thoughts regarding this?
DannyOcean one can buy pycnogenol in the forum of maritime pine bark or a combination of grape seed and red wine extrac, OPC.... I have read the studies on grape seed and fine this to be as good as pine bark and cheaper, billberry is good also, If you google OPC you will find different products on the net that are good and take there recommend dose, I have posted on this before and the book on Hardness factor, which is related to heart health....I do know also he is connected with a company that sells OPC... they also promote his book....I believe in OPC's, great for circulation.... I have seen it change people's life... OPC is in essence pycnogenol, I think there is a trademark thing with the name and is used with the pine bark.....to tell you the truth, I was on OPC and gingko and felt great, been on the pentox for two weeks almost, went off the other supplements, and have felt like crap, but maybe I need to get use to it....I believe everyone should take opc's(pycnogenol), it was in Newsweek on Nov. 6th....when get off this pentox, I will go right back on them...
Rico
Rico... This is Hopeful.. can you check out Encore Tabs and let me know what you think- they are saying that it is all natural and safer than Cialis and Viagra- I am hoping there is nothing in itthat will impact my arrythmia-- please let me know.. you can do a google for their web site
Hopeful
[
Hopeful,
I looked at the product, I don't think I would buy this, there are many supplements like this on the market, you are buying small amounts of things like maca and horny goat weed, this one has 22 ingredients.... once again small amounts of a bunch of different herbs....most of the companies put a lot of the money into marketing, advertising and the packaging the product.... DannyOcean talks about the book Hardness Factor, if you read this it will talk about heart health, which is the pump that gives one good circulation...this over all health concept they believe has to do with ED.....
I take the pentox and cialis because I was told by people on the forum and by researching that the chemicals in these drugs curtail scar tissue, it is not JUST the blood flood, although in a way I believe they could be connected...Lue's report says they don't understand it completely....
If I had ED and couldn't use Viagra or Cialis, then I would take arginine and ginkgo and maybe something like horny goat weed....
I have a hard time with mixing so many herbs together and finding this synergy for ED...ED can also be a mental state, so taking something that says is going to give you a rod of steel can play a factor for some, in a positive way.....
hopeful if I had a medical condition like arrythmia I would talk to my doctor about herbs also.
I have to say that taking something like Horny Goat Weed ect...you have to take much more than I would want to to be the same as say Viagra, like George says, it is hard to match a engineer drug... and then when you start to try to match there potency, I think you playing with fire....
hopeful you should look into pycnogenol.... I would look up OPC....great for circulation, blood flow, and over all health....also ginkgo and red ginseng...before I started the pentox/cialis I was having good luck with this combo.... I started the pentox because like the comerical says....I don't know what that means, But I Want It!!...... I don't know how you are working out also with arrythmia, but a good walk also.... God Bless
Rico
Hopeful ,The only thing I would add to what Rico said is to be very careful with Horny Goat Weed (HGW) since it does precisely what Viagra does, only weaker If I could not take Viagra for health reasons, I would avoid HGW.
Rico and either Danny or George brought up an issue that I share as a pet peeve. It in proprietary nutritional formulas. This is when a company puts together a cocktail of several ingredients and at least imply it is targeted it at some condition. While they may have included all the right ingredients by name, they say nothing of the quantities involved. They hold that as a proprietary formula marketed under their slick promotional ads. Business being what it is, one could contend that this is to protect the "secret formula they put so much research into". Since they seldom have any decent clinical studies that support the claims positive claims for their product, I take a more skeptic view:
Business being what it is, I take the view that they may have the right ingredients but one has no way to guess if they skimp on the more expensive ingredients and load up on the cheap ones. Since you you end up taking several items in one pill with no amounts specified for the individual components, it is impossible to research and build a program around these proprietary cocktail supplements by adding more of a specific item. I boycott such products and believe that there should be full disclosure of the item and the quantity on nutritional products just as there is on a multi-vitamin. Excluding multi-vitamins, when you do find combination tablets or capsules that list quantities, you often find you can buy individual tablets to make the same combination at a far cheaper price. This is another reason I think manufactures of proprietary formulas hide their quantities for the consuming public. I resent this attempt to play on the consumers ignorance and to keep them ignorant of what is going in their bodies. How much further could a "nutritional supplement company" get from the concept of nutrition and holistic health?
The whole time they are doing this they rant about the pharmaceutical companies as a smoke screen to distract from their own practices that are just as bad.
Hopeful, I have to say that I agree completely with Hawk and Rico on this. In addition, I would add that many if not most of these ED products contain things like Yohimbe (which is actually an analog of a prescription drug made from the same substance, Yohimbine). Yohimbe and a number of other supplements can actually damage your heart. They can seriously affect things like heart rate and blood pressure and cause you all kinds of problems. There ARE supplements that can be helpful to your heart and in no way pose you a danger. I would recommend to you, for example, Coenzyme Q10, without hesitation. It has no known level of toxicity, can be used safely up to 300mg per day, research has demonstrated cases where it has cured heart failure, it is a very well known substance manufactured by Japanese pharmaceutical companies and sold in the US as a supplement. It is very expensive but it is a proven supplement, unlike things like Encore, and if I were you, I would be much more concerned about your cardiac issues than your ED. Also, because of your condition, you should discuss ANY supplement you take with your doctor. If your doctor is uncooperative in terms of supplements, you should look around for an MD who is comfortable working with people who take supplements. There is stuff being purveyed out there on the net and in the health food stores that can really be bad for you. And there is little regulation over what goes into these things. I had really severe PVCs (palpitations) a year ago, my doctor literally gave me few options other than surgery (ablation), I ended up taking aloe vera for 18mo. Now I am off the aloe for a month, and I now have no more palpitations. There is stuff out there that can probably help you. Like Rico, I also recommend things like OPCs, pycnogenol, and such. But this is all off topic (and Hawk, feel free to move this post to the appropriate off topic spot after hopeful reads it), if you want more thoughts on the heart issue, feel free to PM me.
-George
Thanks Rico _ I will check this out- as for working out- have good days and bad days= depends- never know when it is going to act up- as for a good Doc- none of them know nutrion or herbs..
Hopeful
Quote from: Rico on November 24, 2006, 11:47:09 AMDannyOcean talks about the book Hardness Factor, if you read this it will talk about heart health, which is the pump that gives one good circulation...this over all health concept they believe has to do with ED.....
As y'all know, I am a great fan of Vitamin E. Some weeks ago, I experimented with boosting my daily Vitamin E intake to 1600IU for a full week. I noted a distinct positive effect and no negative reactions. So at this point I am going to try to push it out to a month or beyond and see where it gets me. I will let y'all know how things turn out. Normally the upper limit on Vitamin E intake is around 1,000IU, but combining it with Vitamin K negates the blood clotting and vascular calcification issues. The next barrier is up around 2,500IU where other toxic effects begin to happen and I will be comfortably below that benchmark.
The other thing I am really finding fascinating is Hans Nieper's fixation on orotic acid. Seems that this substance, when combined with various minerals, produces some pretty astounding effects (according to Nieper who is to minerals what Linus Pauling was to vitamins). While he has long been considered a crackpot, there seems to be increasing evidence that magnesium orotate has remarkable ability to increase the elasticity of human capillaries and a growing suspicion that other of his discoveries have some pretty remarkable effects. Now isn't that a cool innovation? It sounds really relevant to me and I am doing some further investigation. Bodybuilding.com actually carries such a product, a combination of magnesium orotate, arginine orotate and potassium orotate. So I am very tempted. Perhaps my next project.
All this not to mention Ginkgo. Rico has me really interested in it. Seems like it has lots of the capabilities of Pentox without the TGF-beta-1 blocking effect. Still sounds useful. I was taking a prescription CCB which conflicted, but I'm no longer on that, so that clears the way to start taking some Ginkgo. And, of course, I will be careful to select a brand that is clear of ginkolic acid.
- George
George:
Interesting that you have tried increasing your E intage to 1600 I.U.s per day with positive results. That is the amount that I took when first starting my VED therapy. After a month, reduced it to 1200 per day. Then after another month reduced it to 800 until I finished my 6 months VED therapy sessions. I now take 400 perday at evening meals for best results according to my uro. Since I was using the old Osbon Esteem manual model, I had to develop my own set of exercises. My uro at the time and I worked out a regimen that is quite different from the Soma schedule.
Anyway, I firmly believe the high dosages of E along with the VED was the main reason for getting rid of my moderately severe curve of 45 degrees to the right and 45 downward.
Old Man
Still trying to dial in proper supplementation and have some more questions. As background I'm currently on the following:
L-Arginine (3g-5g/day), Acetyl-L-Carnitine (2.6 g/day), Pentox (400mg 3x/day), Viagra (25 mg @ night), Centrex Multi-vitamin (1x/day)
I'm contemplating starting Pycnogenol. It's expensive stuff but I'm going to look online to see what I can find.
I also bought a bottle of Horny Goat Weed today. I'm a bit confused about the talk of it being identical to Viagra in function. From my reading it seemed like Horny Goat Weed was more of a libido enhancer whereas Viagra doesn't seem to have anything to do with libido but rather produces erections. So I'm trying to get a sense of whether HGW is OK to take while I'm on Viagra.
Finally I'm contemplating adding some Omega-3 pills to the mix. I already try to do healthy oils (flax, olive oil) so I'm not sure if this is something I need to do but my recent reading talking about Omega-3s being good to improve vascular health and I don't think there's a problem with adding them.
I feel like I'm getting on supplement overload a bit...not that my body is reacting adversely but remembering to take all this stuff + the hit to my wallet is starting to take its toll. I know I'm doing the right stuff here but when you don't see the results (or even hear of positive results from others) it starts to get a bit discouraging.
Danny, what you are already taking sounds like a great combination. I think that one thing to remember is that you are already taking the most important things that can help your Peyronies. Effectively treating Peyronies is a LONG process and it is important to be patient and allow the Pentox/Viagra/Arginine combination plenty of time to work. Aside from that:
Pycnogenol is definately great stuff and, yes, it is also expensive. I am taking Flavay right now, the most expensive one of all, the original French made pycnogenol/OPC product. This is basically a stellar antioxidant and shouldn't conflict with what you are already taking, but ALWAYS discuss these things with your doctor before you start taking them.
Horny Goat Weed is marketed as a libido enhancer. I use HGW, lots of it, and perhaps it is a libido enhancer, but if it is, I haven't noticed it. A lot of what you read about supplements is pure marketing BS. What is known about HGW via research is that it contains Icariin and Icariin is a PROVEN PDE-5 inhibitor (just like Viagra). I think that anyone who takes HGW along with Viagra is asking for problems. I would strongly advise you to skip the HGW. If you are looking for a libido enhancer, I would recommend Maca. I take lots of Maca (tablet or capsule form) and find it to be a much more effective libido enhancer than HGW AND it is very unlikely that it would conflict with your current medication.
Fish (omega-3) Oil. Fish Oil is extremely healthy and is an effective anti-inflammatory. I would highly recommend it and I can't see where it would conflict with your current meds. Make sure it is certified free of heavy metals and that it is NOT cod liver oil. Some people don't know the difference.
Once again. You are ALREADY taking the most important meds for your Peyronies. You will not see fast results. Only the scam artists promise fast results. BE PATIENT and you will eventually see results. If you cannot afford to add more stuff to the mix, thats OK, don't allow yourself to be frustrated by thinking you are missing out on the one supplement that can produce a sudden cure because nothing like that exists. Just do what you can afford to do and be patient.
Also, go to this site and you will find a great place to check for potential interactions between drugs and supplements along with a lot of good information about both:
http://www.drugdigest.org/DD/Home
Wishing you the best,
George
Was there someone on here who sadi it was counter productive or even bad to take l arginine with a vitamin containing manganese? I just noticed my multi vitamin contains this and remember someway saying something to this effect, I believe it was George.
ComeBackid
Hey George. This was a great and helpful reply. People like you are what makes this community so special.
I am going to hold off on doing anymore HGW for now. Part of me is a little concerned about being on viagra long-term (both in terms of health and the cost) and I'm going to bring that up with the doc next time I see him (which is turning out to be a crazy complicated process by the way...I now have to go back to my GP to get another referral to the same uro I've already seen once...grrr...). The recommendation about maca is a great one. I'm going to look into that.
I did order some Pycnogenol as well as a supplements that combines ALC and Alpha-Lipoic Acid. I'm also going to look into adding fish oil in there as well.
Part of me is a bit concerned about using too many supplements but I live a pretty healthy lifestyle overall (good diet, lots of exercise, etc.) so I'm going to go with this until I start noticing any negative side effects.
Quote from: George999 on November 25, 2006, 12:54:17 PM
Danny, what you are already taking sounds like a great combination.
Hello... I got a question for all guys that take trental/pentox.
Have you experienced any (don't know what it's call in English but) small red veins appearing on the skin. Or perhaps making already veiny areas worse???
Thanks in advance
I experienced those while on pentox, but I was also pumping using the VED soma correct. I quit taking the pentox and the dots went away. The pentox essentially thins the blood and then when you pump it draws the blood through and breaks small vessels. If you experienced the small red dots without pumping and just being on the pentox I don't know what to tell you.
ComeBackid
Quote from: wiseguy on November 26, 2006, 08:43:31 PM
Hello... I got a question for all guys that take trental/pentox.
Have you experienced any (don't know what it's call in English but) small red veins appearing on the skin. Or perhaps making already veiny areas worse???
I've been on Pentox now for 8 weeks, and have not noticed any of these or any other side-effects. I've even taken it on empty stomach without any problems, though I try not to, since that's not recommended.
The only side-effect I've noticed has been occasionally a slight throbbing or pulsating sensation in the groin now and then. Not often.
And oh yeah, my dick has straightened too.
Just kidding about that last part. ;D No noticeable change in curve yet.
Thanks for your replys... :)
I also got red dots from the pentox on unit head, I had to quit pumping with the ved for a few days..... I can't anything good about the pentox at this point, my stomach hasn't been the same since taking it, I wasn't told to work up to three a day, I asked my doctore for it and just started on the three a day.....
Now that I'm on it I don't want to go off...taking the cilias gave me some very strong erections at night, my hour glass seem to get worse, was this from that???
I did let the horse out of the barn and had some buckling, this might of cause it also....
Has anyone on this forum seen anything positive about pentox yet? Other than that one guy who was on it for two years and had no improvement in his hour glass, but improvement in curve.... anyone that is on the forum??????? It seems like pentox has been around now for four or five years now..... why isn't anyone talking about it at the AUA conference?
Rico
ComeBackid, that was indeed me. Seems that manganese plays a role in fibrosis, but I was overreacting by advising you or anyone else not to take any of it. For that I apologize. Although manganese can do bad things, it is also essential for our bodies and you are probably gaining a lot more from the multi's than whatever you might be losing from the manganese intake if anything. I also take multi's now and then that contain manganese. So forget what I said at the time. A little knowledge can be dangerous, and my advice at the time was based on a little knowledge and was, as a result, poor advice.
- George
Pentox has the effect of making red blood cells more flexible so that they can fit through a smaller hole. This is good in that it allows red blood cells to pass through damaged capillaries which they would not otherwise be able to navigate. But it can also have the effect of allowing them to 'leak' through damaged tissue in ways they would otherwise not be able to. So anyone that is having this problem might want to look into something called Rutin which has the effect of strengthening capillary walls and also into taking a little additional Vitamin K2, which makes sure that your clotting factor is up to snuff.
- George
Other than red dots and a upset stomach, has anyone seen anything positive on pentox?.... also has anyone review Levine's book, is there anything new in it or just the same stuff.....
Just to make jargon more clear. Small dots are known as petechiae. They are the result of micro-damage to the capillaries in the skin, and can be a sign of a bleeding problem or of a pressure phenomenon. A pressure applied to the skin in the form of a suction cup or a VED can cause them (and does). In that case a vacuum pressure applied, if you will, to the "outside" of the capillary pulls bllod through the wall and into the skin we can see. Similarly, pressure on the inside of the capillary can force blood out - when we vomit and cough badly, we sometimes will see small petechiae around the eyes from driving up the pressure inside the capillaries - in that case the blood is forced out, not "sucked" out by a vacuum.
In any event, a tendency to bleed (poor clotting) can make this worse, or more apparent, OR poor capillary wall integrity. Thus. attending to and improving blood clotting capabilities, and improving capillary wall integrity are both important, as is not applying to great a force to the skin to cause damage!
But with all that said and done, the question that was raised was about the entire small vein or capillary becoming more visible and red, not about petechiae. I *think* that vascular integrity is part of that appearing, and if I saw that I would look at clotting, and vascular wall strength as two likely issues.
Tim
Tim what do you think on pentox or VED.... if the pentox combo pentox/ved is causing this, would you suggest to stop the pentox or VED..... my case is that I have only had peyronies for six months.... I remember you said to DannyOcean to stay with the pentox for he could always do the VED.... do you still think this?
Also I know Tim, Hawk, George999, and several others have said that Pentox seems to be the best thing out there.... but don't seem to be taking it? I know Tim being a doctor is like a mechanic, there car never gets fixed, because they are fixing everyone else....or is there other reason for you not being on it? George999 maybe because your condition is at bay now....
Also once again, is there anything out there on pentox that is new, not just the one report, or what has there doctor said about it, other than come back in three months.....
Is anyone having luck using VED and pentox, not getting the red dots?
Rico
Rico, I think that the decisions we make as to how we treat our Peyronies problems can be fairly complex. They involve everything from how debilitating our condition is (our uro may say that our condition is not sufficiently severe enough to merit expensive drugs like Viagra and therefore might be reluctant to prescribe them) to the peculiarities of our own personal situation (insurance issues, financial situation, personal preference in terms of treatment approach etc.). I have tried to be very upfront in stating that I am NOT taking the PAV 'cocktail' , but I do recommend it based on what I have read to those who feel it to be appropriate for them. I don't think that Tim or I or anyone else has tried (at least not intentionally) to coerce anyone into taking Pentox. But we have tried to point out that in our eyes it is a fairly promising alternative in an environment where there are not many promising alternatives. I also would recommend the VED, BUT I myself am not using it. Also as you know, I have also been a proponent of Vitamin E, and at this point I AM probably taking more vitamin E (1600-2000IU per day) than any of you. As far as hard information on Pentox and Peyronies, there is not that much out there right now other than Lue's preliminary studies which have been promising AND the fact that Pentox has proven effective against other forms of fibrosis. In any case, I would caution you against expecting instant results. Causing regression in Peyronies disease is not a simple thing. It requires extensive tissue remodeling in the face of a disease that is by nature degenerative (tending to go the wrong way). That takes a lot of time and perseverance. I think this article, though a bit dated, is still one of the best on Pentox http://www.medicalnewstoday.com/medicalnews.php?newsid=38297 (http://www.medicalnewstoday.com/medicalnews.php?newsid=38297).
- George
George999,
I don't think you or anyone on this forum is trying to coerce anyone in using anything, and I'm a big boy, I make my own decisions and then live with them....as far as being careful about asking questions, well I don't believe there is a bad question and this is what the forum is for.... I was just curious.....
I do find a problem with the medical community, putting out that report that you set up a link to, and the end of it says back in 2002 that 16 people would be going on pentox and a follow up report will follow, it has been four years?
Rico
Rico, my apologies, I will rephrase that, I should have just attempted to answer your question and left out the editorial. But I think your comment on the link just tends to reinforce my point. Even with Pentox, treatment takes a long time. There is no information on the new study yet because the final results aren't in. I'm assuming that it was to be a five year study, thus the results will be available five years after start of study plus whatever time it takes to process the data. Patience!
- George
Saw this article today:
http://www.pennlive.com/news/patriotnews/index.ssf?/base/news/1164686135163520.xml&coll=1
Does anyone know if walmart will be offering pentox at $4 per month? I just got a new health insurance plan under work, I've got a $100 deductible on prescription drugs, it costs $55 dollars per month supply of pentox where I"m getting it now, so after two months I will only have a copay of $10 every month. If I could get the pentox at $4 per month I could save $142 per year, I'd never even meet my deductible total either... It says older generic drugs, pentox is pretty old, has anyone tried out this program in their state, it is new here in Pennsylvania.
Excellent article- Has anyone contacted Lieu about the follow up report?
Hopeful!
Quote from: George999 on November 27, 2006, 04:50:59 PM
I think this article, though a bit dated, is still one of the best on Pentox http://www.medicalnewstoday.com/medicalnews.php?newsid=38297 (http://www.medicalnewstoday.com/medicalnews.php?newsid=38297).
- George
Hi everyone, Forest here. Newbie to the group. Sorry if not doing this post correctly. Still learning the board and format.
Dx with Peyronies about 8 months ago. Had sudden onset 45 degree lateral curvature. Condition has not worsened nor improved while following urologist recommendations of 800mg VE, 1000mg Calcium, 50mg Zinc, hold extra VC, and 15 minute manual massage of plaque per day. After 3 months on this regimine with no change, I opted to try the Potaba which I have been on now for a month with no change in condition as of yet. I am wondering if anyone has advice/feedback for me on any of this treatment. Also, is it true that the type and quality of the vitamin E makes that much difference? I have spent way to much money following this rumor for other health conditions without any positive differences and therefore, I am reluctant to do so with VE unless you know of actual positive results. Also, what do you think of the manual massage idea? Seems detrimental to me. And, lastly, what do you guys think of Potaba?
Appreciate the help and look forward to getting to know everyone.
Thanks,
Forest
The Walmart $4 drug list is here: http://i.walmart.com/i/if/hmp/fusion/genericdruglist.pdf (http://i.walmart.com/i/if/hmp/fusion/genericdruglist.pdf) and currently only trazadone is on it. Not Pentoxifylline and certainly not Viagra which has several more years to go before going off patent :'(.
Hi guys,
I'm new to the forum, was just recently diagnosed. Im a bit confused and overwhelmed by all these supplements and vitamins and this and that. Can someone please briefly summarize for me what supplements they're using/found helpful? I use Vitamin E (says it's as "dl-Alpha-Tocopheryl Acetate") and a multivitamin, but thats it. I don't have a problem getting an erection, but sometimes have trouble maintaining it, and have downward curvature. Any insight is appreciated, I know different people have different experiences but a summary consensus of what has been safely tried would be really helpful.
Thanks so much, this forum has been amazing so far,
Newly
Thanks George- I don't know where youlive- but here in South Florida- just getting doc to take the time to talk to you is almost impossible- as they are so busy. I do need to find another good cardiologist. I am on CQ10- was taking 300MG - now only taking 90..EXPENSIVE- as for Aloe- how much and what kind are you taking??
Hopeful
Quote from: George999 on November 24, 2006, 12:40:55 PM
There ARE supplements that can be helpful to your heart and in no way pose you a danger. I would recommend to you, for example, Coenzyme Q10, without hesitation. And there is little regulation over what goes into these things. I had really severe PVCs (palpitations) a year ago, my doctor literally gave me few options other than surgery (ablation), I ended up taking aloe vera for 18mo. Now I am off the aloe for a month, and I now have no more palpitations. There is stuff out there that can probably help you. -George
Hopeful, I took the common aloe softgels (dirt cheap) available at most of the major pharmacies. I took two a day, one at lunch and one before bed over a period of eighteen months. I stopped using them a little over a month ago and my palpitations have not returned so far. Before starting the aloe, my palpitations would start and continue non-stop for 20-30 minutes until I would actually be feeling physically sick. My doctor told me basically that all of the medical options were pretty draconian. I took the aloe for a stomach issue, and the palpitations were gone in around 24hrs, so if its going to work for you, it should work fairly quickly. It certainly gave me my life back. The important thing is to get the softgel form with 'wet' contents, NOT the capsules with 'dry' contents. The dry aloe in capsules is actually a very harsh laxitive that you don't want to risk. It is not recommended by the medical community and I really don't know why the even sell it. It is so harsh it can be dangerous. Even the softgels will likely give you some minor intestinal cramping until your body gets used to them. You might want to start with one a day and then work up to two. I would also advise discussing it with your doctor first if possible. And in case you haven't seen this before, you might want to take a look: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=2864002&query_hl=1&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=2864002&query_hl=1&itool=pubmed_docsum)
- George
Forest,
Welcome! Sorry that we are so busy with our ongoing discussions that we neglected to answer your post. I find your initial regimen 'interesting'. It is different from any recommendation I have ever seen before, particularly in the sense of the calcium and Vitamin C. As for potaba, some people have found it effective, but I wouldn't count on accomplishing much with it in three months time. I personally favor a research based approach to Peyronies and my favorite strategy would be Pentoxifylline, Viagra, Arginine and Vitamins E and K. I am not personally taking Pentox or Viagra because my current supplement based strategy is working. I am taking large amounts of broad spectrum E and Vitamin K along with a number of other supplements. I strongly suggest you browse your way through this forum as most of the questions you are asking have already been debated here ad nauseum. I think Hawk actually has some sort of subject oriented knowledge base in the works as well. You might check that out too and then come back and bring up for discussion any thing that isn't clear or that you are looking for more info about. I wish you the best!
- George
Hopeful, one additional note on the aloe. Avoid the liquid form also. Many of the therapeutic components of aloe are very foul tasting and they filter them out of the liquid formulations in order to make them palatable.
- George
Thanks George!- I tried aloe before- liquid and the taste almost killed me- will look into the soft gels!
Quote from: George999 on November 28, 2006, 12:22:46 PM
Hopeful, one additional note on the aloe. Avoid the liquid form also. Many of the therapeutic components of aloe are very foul tasting and they filter them out of the liquid formulations in order to make them palatable.
- George
Howdy George,
Thanks for the welcome and the reply. I too thought it odd about my urologists orders for the calcium and VC. I also think the manual massage is a strange idea in that it could cause increased trauma and calcification. Anyhow, thanks for the help. I will take your advice and spend some time reading posts.
Thanks,
Forest
Greetings
Went to urologist today and he said I may or may not have Peyronies Disease. He was not very helpfull. Will vitamen E and AZETYL-l-CARNITINE be effective in anyway?? This is what he has perscribed? It is so clear to me what has happened, tissue is hardening around penis and this is causing it to shrink..but urologist could not say and said he cant see symptoms of Peyronies Disease!? What else could it possibly be?? Any advice is welcomed. How am I meant to get a doctor to pescrible these methods that you guys have found to help? The urologist I saw just said theres nothing that can be done.I believe that is rubbish there must be some way to attack it early on to help minimse the effects.
Regards
D
Hello Gibson,
Two pieces of advice:
1) If he doesn't know what's going on, and believes that there 'is nothing that can be done', its probably time to see another urologist, the ones at the major medical centers are the best, especially those specializing in Peyronies. If you actually are noticing hardening of the tissues, you need to be seen by someone with more experience in these matters than your current uro, period. Step 1, POLITELY ask your current uro for a referral to your nearest major university medical center (by that I mean New York, Chicago, Seattle, San Francisco, Los Angeles, Atlanta, etc. ... you get the drift right?).
2) IN ANY CASE, Vitamin E and Acetyl-l-Carnitine won't hurt and might help. Especially Vitamin E. But be sure to use the broad spectrum natural form available from a number of suppliers. I suggest you carefully read through this thread from beginning to end on supplements. A lot of things you will be able to scan over, but you will find a lot of useful information right here on both supplements that might be useful AND on where you can get the prescription drugs. I also recommend that you read over the urologists and doctor thread. You might find some good tips there. It would also help if we knew what part of the country you live in.
- George
I live in London. Is there any in the uk that you know of?? Need to get something going fast as I believe it is very serious at moment!
London makes things more difficult for sure. But my advice would still be the same. Basically a lot of localized sleuthing. You know the geography and the medical system in the UK better than any of us here in the US. Do you have University Medical Centers in the UK? If so, have you contacted their urology department? If not, I would certainly give that a try. If that is not a possibility, I would simply request some consultations and see if you can find any urologist willing to prescribe Pentoxifylline and Viagra for your condition. Viagra should be a no brainer, since you appear to have a valid ED problem. Pentoxifylline might be a little trickier since it is not generally approved for Peyronies but is being used for Peyronies by some very cutting edge urologists here in the US. It would help if you could calm down and read this forum THOROUGHLY and use the links to pull some research documentation together so you can make a good presentation to your current urologist before you write him off. All it really takes is a doc who is flexible and willing to learn. The best prescription treatment out there right now is Pentox/Viagra/Arginine. Here in the US Arginine is a non-prescription supplement, I don't know about its status in the UK.
From your history that you have shared it sounds like you could have initiated a Peyronies type syndrome. It is important to know that the penis can take quite a bit of abuse in a usual situation. Peyronies is something that happens when for some reason your body is not able to properly respond to some minor trauma or incident.
The most important thing that I would advise you right now in the apparently acute stage is number one, while you are awaiting further help (which can take months >:() is to GET THE INFLAMMATION UNDER CONTROL. One of the best things I know of is Mangosteen juice. Also there is fish oil capsules (make sure they are free of heavy metal contamination). As I stated before, the Vitamin E is also good. You need to intensively attack inflammation and free radicals. You can do that with supplements. But read this forum carefully and you will be amazed at the number of ways you can attack this problem on your own with supplements. The sooner the better, don't waste any time. Another important thing to remember is that if you can attack this problem with plenty of ammo now, there is still a good chance that it will resolve on its own to a large degree. And don't fall for the scam artists again either. There are plenty of sites out there selling WORTHLESS Peyronies remedies. Peyronies is treatable, but it is difficult to treat and anyone promising an easy or quick solution is lying to you in order to steal your money. All the information you need is really right here on this forum and won't cost you anything.
Also, the one thing that didn't make sense to me about this is the fact that you are having pain with ejaculation. That doesn't sound like Peyronies to me. I hope the urologist checked your prostrate. If not, you should have that checked just to make sure there is nothing going on there. You should also make sure your diet is good (check www.dashdiet.org for excellent recommendations) and that you are getting lots of endurance type exercise (like walking, treadmill, elliptical, etc.). That generates nitric oxide which is healing to your whole body.
I hope this is helpful and wish you the very best,
- George
Does anyone use Puritan Pride products? If so, which supliments? They have an exceptional sale going on.
Pat,
I have used PP for years because their prices cannot be touched, and a spot check of some of their products with independent lab tests has checked out good. I take many supplements having little to do with Peyronies Disease
Here is my short list I take for Peyronies Disease:
Arginine 1000 mg pills
Acetyl L- Carnitine 1000 mg capsuls
Acetyl L- Carnitine (400mg) / Alpha Lipoic acid capsuls (200mg) combination capsuls
Horny Goat Weed w/ Maca
Co Q 10
I also take a few other things from GNC
Quote from: George999 on November 29, 2006, 02:18:32 PMAlso, the one thing that didn't make sense to me about this is the fact that you are having pain with ejaculation. That doesn't sound like Peyronies to me.
Painful ejaculation was one of my earliest symptoms of Peyronies. It began with a sore erection, a small pencil-eraser sized dent on the shaft (when erect), and upon ejaculation, "Yeeowch! What the...?" Kind of a burning pain, like I was shooting jalapeno juice out, or something.
Anyway my point is... even the painful ejacs indicate Peyronie's to me.
Myrddin,
I take it your pain upon ejaculation was localized to an area of your penis and not from within your body, and not associated with your testicles or the area behind your testicles.
Quote from: Hawk on November 30, 2006, 01:07:35 PMI take it your pain upon ejaculation was localized to an area of your penis and not from within your body, and not associated with your testicles or the area behind your testicles.
Yes, penis pain only. I didn't notice if his was described as being in the testicles, but if that's so, then I'm with George - doesn't sound like a Peyronie's symptom.
I just read in Wikipedia that PDE5 inhibitors (viagra, levitra, cialis) do nothing if there is no sexual stimulation present. Does that mean that the studies that include this drug in the PAV cocktail are relying on automatic nightly erections to let these drugs help w/ NO release, and or are they being used to help create nightly erections. I just started taking 25mg of viagra nightly about a week ago, and at first noticed semi hard erections if I woke to use the bathroom. Now I am not noticing anything besides the side effect of being extremely cold during the night. Wonder if you build up a tolerance to this drug in a short time period. Maybe Dr. Tim can offer some help in this area. crs
I have read several posts referring to increased NO release being beneficial for Peyronies. First of all, is everyone referring to Nitric Oxide? If so, I am baffled as to how that could be beneficial for Peyronies or anything else, unless a person has a disorder that limits NO levels already. Extra release of NO is not good for ones health. I am curious about this topic because I have a disease that causes excessive levels of NO, yet I have Peyronies. Could someone enlighten me on this issue?
Thanks,
Forest
Firstly, PDE-5 inhibitors -
Because of the common usage of PDE-5 inhibitors (which enhance nitric oxide production in the body) as a treatment for ED, everyone associates them with their efficacy in facilitating erections. But because Nitric Oxide also plays many other roles in the body, PDE-5 inhibitors can also play other roles. Nitric Oxide is a key factor in the proper dilation of blood vessels, including capillaries that supply blood to the whole of the body, including the penis. It is in this role that PDE-5 inhibitors are beneficial to Peyronies sufferers. If you look at the whole combination of Pentox, Viagra, and Arginine. It is all centered around improving circulation. Pentox and Viagra are both PDE-5 inhibitors. Arginine is a Nitric Oxide substrate. Pentox also makes red blood cells more flexible so as to fit through narrow damaged capillaries which have been dilated as much as possible with increased Nitric Oxide. And of course, Pentox carries a crucial additional benefit of inhibiting TGF-beta-1, a factor in fibrosis. But it is really necessary to increase vascular Nitric Oxide production in order to provide the circulatory benefit to make this strategy work.
Secondly, Nitric Oxide:
The big problem with Nitric Oxide is that it can be extremely toxic. In small amounts at the right moments in time at the right place in the body it is essential. So it is entirely possible to be suffering from excessive Nitric Oxide in certain tissues and be at the same time, deficient in Nitric Oxide in other tissues, since the production and destruction of Nitric Oxide in the body is often a very localized event. Unlike other substances, Nitric Oxide in the body is 'instantaneous' . In other words, one minute it is there and the next it has done its job and is gone. Its mere presence therefore usually requires continuous generation. One way in which nitric oxide is continuously generated in the vascular system is via exercise. But one of the known causes of fibrosis in general (and also one of its effects) is a deficiency in Nitric Oxide.
Indeed, everyone's case is unique to some degree, which is why I try to encourage everyone to discuss the use of possible supplements with their personal physician before starting to just take stuff. What is right for someone else might be very wrong for you. I also advise discussing these issues with your pharmacist. Pharmacists are often more knowledgeble about supplements and herbs than are physicians. And lastly, I always try to encourage people to read up on everything they are taking so that they know what potential side effects might be.
- George
Viagra works - for getting erections - with stimulation. The viagra is used to stimluate NO production to facilitate healing processes, not to boost erections, therefore, erections should not be part of the equation when we talk about using this drug for Peyronies Disease.
NO has a good and an evil face. Exhaled NO is a biomarker of inflammation in the lungs. Improved lung function in asthma is accompanied by less exhaled NO. Yet, we think that NO stimulating pathways can lead to less inflammation! How can this be?
Well, I will leave that for thought for now as I have to go back to clinic. But there are good reviews of NO (stiff on the science though) available, by doing OVID or MEDLINE reviews.
The key concept is that the Nitric Oxide Synthase isoforms make a difference in the LOCAL effect of NO (good or bad). Quoting from a review article:
"Accumulating data support a physiologic role for the nitric oxide (NO) signaling pathway in the regulation of cardiac inotropy and relaxation. A key finding regarding the constitutive production of NO within the cardiac myocyte is that NO synthase (NOS) isoforms are expressed in unique subcellular microdomains, which in turn provides support for the idea that NO signaling is compartmentalized. The concept that NO signals in microdomains in which NOS isoforms are associated with effector molecules has greatly aided in dissecting the manner in which NO modulates excitation–contraction coupling (EC coupling) and cardiac reserve mechanisms (specifically [beta]-adrenergic inotropy and the force–frequency response)."
IOW, the effect is due to the localized coupling of the presence of NO with other molecules that lead to good or bad things happening. And furthermore, the formation can be good or bad based on the local effects AND the triggers thus linked to creating NO. So, and infection can trigger NO production - but so can low or high blood pressure etc, So lots of things can lead to NO production in localized "microdomains" (meaning small places in the body, like the wall of a blood vessel or theinterior of an bronchial airway.
I often wonder if we are going cause more than we fix when we toy with NO production, but it is the single most exciting area of biological discovery on the planet today, IMHO.
Tim
George,
Remember that Gonzalez-Cadavid showed that TA has isoforms for both PDE4 and PDE5, and that viagra had good effects on their rat model of Peyronies Disease, and also worked in vitro where blood flow was irrelevant (ie it was not present).
So the effect of viagra on Peyronies Disease may not be related to blood flow at all. He also showed that pentox worked in that system, which is the work that promoted the notion of using it clinically in people.
I may start to rant about those who would stifle animal research so don't get me started!
At any rate, the viagra and pentox work via antiinflammatory mechanisms independent of blood flow. Blood flow may get better, and that may be a good thing, but it is not hypothesized by those doing the reaserch to be the reason it works.
Tim
George, Tim,
Thanks for "straightening" ::) me out about the viagra. I was wrongly assuming that it would not help release NO unless there was a full or partial erection. So much to learn about this disease. My wife was joking last night that I should go work for a gym with all the info I am learning about vitamins, supplements, the body's system, etc. It sometimes gets confusing trying to keep track of everything. Part of my problem is that one search leads me into many different areas to explore. I'm starting to get information overload and meltdown. LOL. crs
Tim, I was aware of the Viagra PDE-4 link (which implicates inflammation), and I am convinced that countering inflammation is certainly important, but I don't think that would explain an in vitro effect either??? Neither blood flow nor inflammation can occur in vitro, right? What happens in vitro is more likely to be some direct chemical effect like that of an enzyme or such. But this is indeed fascinating. So, in the case of Pentox, a non-Nitric Oxide effect can be explained by its TGF-beta-1 effect. In the case of Viagra there is some sort of mystery effect. But what about Arginine? What effect could Arginine be contributing other than its role as a Nitric Oxide substrate? And what about the research that indicates that Nitric Oxide is capable of breaking down scar tissue? I would argue that there are multiple pathways involved here and that circulation and Nitric Oxide are probably among those. But I most certainly would agree that the answer is not just in creating Nitric Oxide by brute force. But the Pentox/Viagra/Arginine combination would certainly imply the creation of additional Nitric Oxide in the process, since all three of them are Nitric Oxide facilitators in one way or another,. But you seem to be arguing that that may not in fact be behind its therapeutic effect in the case of Peyronies.
- George
NO and arginine may improve blood flow to tissues where they are being expressed (they do), but I am arguing that their effect on placque may be not secondary to the blood flow, but their effect on the placque cells themselves. This is a key concept to grasp IMO. I think that a vasodilator may cause erections or flushing (for example), and MAY even improve blood flow to the tunica albuginea. But the drug-like effect on the placque may be more related to the effects of PDE4/5 inhibition and NO activity on inflamed cells directly.
Tim
Tim, great answer and one that I can concur with completely. Thanks!
- George
Thanks everyone for the feedback on NO. You guys have a deeper understanding of this issue than I do. I was curious because with my condition, the last thing I want to do is increase NO production. Treatment for me will be a balancing act and finding ways to work with this catch 22. Thanks again.
Forest
Forest, Your case really illustrates the point that each of us have different pre-existing medical conditions. That is why it is important in the end to be sure to get PROFESSIONAL medical advice whenever we start any supplement or herb about which we have doubts. Remember that not only doctors, but also pharmacists can be helpful in this area since both have insights as to how various medications and various conditions interact. You might be able to take certain things which stimilulate NO without aggravating your current situation or you might not be able to touch any of it. ONLY a professional can tell you those things with any degree of certainty. The other advantage that doctors have is the fact that they can sometimes say "I don't know" and then have you try a little bit of it and follow up with a test to find out if it is causing you a problem or not. So, in spite of what some might think or say, your personal physician and your usual pharmacist are great resources within convenient reach. So be sure to make use of their expertise in these questionable situations. Also, if you start taking ANY supplement or herb and subsequently start having some strange symptom, back out of what ever you started last and see if the problem goes away. If it does, don't take the stuff again. A lot of this is just common sense, which most of us at times fail to exercise and that can get us into trouble with alternative treatments.
- George
Hi George, Yes, great advice to make sure and trust the professonals because I do get into not trusting them. I have some good reason for that, but it's just not safe to do it completely on my own, especially with the complex health problems that I am dealing with.
Thanks,
Forest
Since Rico has spoken so highly regarding Ginkgo and in fact has reported a very positive effect from it, I thought I would not only give it a try, but also look into it a bit deeper. Ginkgo, of course, is known for its role in preventing the 'clumping' of platelets. This is why it is able to be effective against claudation, a condition wherein the capillaries of the legs become 'clogged'. In fact, this, being an application similar to that of Pentox (which alleves the same condition by enhancing the flexibility of red blood cell membranes) has led some of us to believe ginkgo to be beneficial in the case of Peyronies. But it does not stop there. It seems that there is also a connection between Ginkgo and TGF-beta-1 that is almost hauntingly Pentox like http://www.blackwell-synergy.com/doi/abs/10.1111/j.1478-3231.2006.01378.x (http://www.blackwell-synergy.com/doi/abs/10.1111/j.1478-3231.2006.01378.x). Then you go on to discover that Ginkgo also has the capability of degrading extracellular matrix and it gets even more interesting. The more I am learning about Gingko, the more I am liking it! ::)
-George
PLEASE TAKE CARE TO NOTE: THERE ARE WARNINGS EVERYWHERE ABOUT TAKING GINKGO WITH PENTOX. THE BOTH ARE BLOOD THINNERS AND IF YOU ARE TAKING PENTOX, YOU SHOULDN'T TAKE GINKGO WITH IT EXCEPT WITH THE KNOWLEDGE AND APPROVAL OF YOUR PHYSICIAN.
George,
As always, great information.
The generic phrase blood thinning (which covers everything from reduced plateletts, to reduced platlet clumping, to smaller blood cells etc) increases blood flow to areas. It occurs to me that the same characteristic that causes increased blood flow would likely to also lead to more likely or prolonged bleeding in the event of trauma. This would mean that while using such substances, efforts must be taked to minimize trauma. Likely forms of trauma could be careless sex with an inadequate erection, overly aggressive VED therapy, any other rough incident involving the penis. The evidence seems to indicate that whole blood leads to scar tissue. Capillary damage while on such products would lead to greater amounts of whole blood in contact with the tunica tissue.
Such products may well be a double-edged sword
George:
There have many studies with pentox vs ginkgo and ginkgo has came out on top a couple of times.....a friend of mine on here just emailed me and said that now that he is on ginkgo that he had sex five times in two days and that has been a first for him in sometime....It is also the number one supplement sold in Europe.....after the atomic bomb hit in Japan, days later a ginkgo tree started to come up....I don't know what that means, but I want it:)....
I was reading about pentox and vitamin E taken together, with fibrosis with cancer patience it was shown to be more effective after radiation when taken together...I'm taking full spectrum E with my pentox.....
I can only take pentox with the arginine twice a day, it makes me have acid reflux, which is not good for over all health.... I'm into my third week with it now, I had been on ginkgo for several months with no side effects and I could also do the VED, with pentox I get red dots on my unit head, so I had to back off the VED....
Ginkgo like pentox takes time to take it effect.....the engineering of the pentox at 400mg ea. is probally more exact....I would buy a high quality ginkgo and I fell that 120mg to 180mg per day taken at 60mg doses work for me...once again I feel that ones body size and over all health is something to take in consideration, I have found studies on pentox that is adjusted for children and the vets also with animals, a horse takes more than say a dog or cat....they are using pentox and ginkgo at the vet....along with OPC's.....
Blood thinners like George says shouldn't be too over loaded with other blood thinners, although Vitamin E has been shown to work better with pentox once again, I have only read one case where there was a problem with someone taking both ginkgo and pentox together, and he was in ill health to Begin with....but more is not always better and can be redundant also....
At the end of the day there is more research on Pentox, so doctors feel more comfortable with it, plus it is engineer, but there has been to many studies by groups like Mayo Clinic where one cannot discount it and it's mirroring of pentox....I don't believe this can be done with cialis or Viagra, nothing even close.....
I will see if my body adapts to the pentox....my over all health I feel is the best way to combat any diesease and if I can't eat right or workout like I want to due to flu like symptoms, then I will have to adjust...plus the benefits from the VED will be back.....
So I would go back to 60 mg of ginkgo taken twice a day/10mg cialis every 48hrs/500mg arginine twice a day along with 400mg of full spectrum E twice a day and OPC's....lots of exercise and a anti inflammation diet.... a long with the VED exercises....
Personally I had to adjust my diet for the pentox....OPC's when talk about are describe also like pentox, make your blood slippery ect....newsweek talk about them last week, positive report...
Pentox is only ten dollars a month for me on my insurance, the cialis is the cost to me....but I don't feel like I said that I can match it's effect at a GNC product....
The one thing I did find interesting in a report Tim sent me and I believe George also read was that in the study they use pentox or cialis.....
Although this is still a mystery, I believe that through there trial and error approach or more pragmatic approach using anti fibroid drugs along with ED and NO supplements they are getting closer to are problem....
Everytime they look for a new ED drug they do test, these test tell them plenty....pentox or ginkgo are a forum of ED medication...the bringing of more blood flow to the area is a good thing, a healthy penis works better.....the heart also...it is the carburetor...you need a good pump...
When I use dmso cream or solution(thacker), I also get a blood flow effect to the area, and maybe this has been the key to thacker formula, but with it running through your body 24/7 and hitting it from several angles, such as the pav formula is much better.....the VED is also pumping blood to this area...
Tom Lue is a top urologist and he claims that many men with peyronies have ED...due to the scarring, which happens to ones unit if he doesn't use it....I have debated this before and really don't want to go down this road and haven't cut and pasted every article I read on here, but I believe this to be true....now some do have strong erections with peyronies....but the scarring is the key to the problem and looking for ways to prevent ED(scarring), is good for all of us....
Rico
Hawk,
I would also like to suggest that there are other steps that can be taken to prevent such problems. Like for example taking Rutin, which is known to strengthen capillary walls, and of course in the case of supplements like Vitamin E, taking plenty of Vitamin K which will maintain clotting factors at normal levels. So, I think you are right. These things need to be used with caution. But every treatment that is beneficial also carries risks. The real challenge is to achieve a synergy of effects and at the same time attempt to mitigate the risks of those effects with other effects and reach a point where a slow but persistant regression is achieved. And with all due respect, I just happen to believe that is possible. I don't claim to have attained it quite yet, but I really believe it is totally achievable. But I also totally agree with you in terms of knowing the risks and avoiding taking steps to avoid situations where physical trauma is likely. On the other hand, after months of being on multiple 'blood thinners', I tripped on a curb and fell flat on my face on the concrete some months ago and didn't even get a bruise. So I believe it is possible to mitigate a lot of the dangers. But when the experts say to never use Pentox and Ginkgo together, that gets my attention, I would never risk going against that kind of advice. But every opportunity carries risk, and unfortunately for me, I have an eye for spotting opportunities. Oh well ... I have rambled on enough for today I guess.
Sincerely,
George
PS - Rico, sorry you are having such a difficult time with the Pentox. You might try taking a bit of Mangosteen Juice with it for your stomach. That has helped my stomach a lot. Also, SNS never really came through with their Arginine E2 Matrix, so I am going to give SAN VasoFlow a try instead. There have been pretty good reviews on it on bb.com and I'm going to give it a shot at a very low level and see what happens.
Regards,
George
George:
Thanks, I have been trying different things for the stomach, what works best is to take it only twice a day.... someone pm me and got off it for the same reason, he stayed on it for awhile, but couldn't take the stomach problems with it....
They prescribe trental, but gave me a generic, don't know if that makes a difference, it taste like crap....I have the hour glass and just hope not to shrink anymore in that area.....it is my main concern....I feel if I can shut down the inflammation completely in the first year and shrink plaque, then I can deal with the remolding......I believe the hour glass is the hardest thing to deal with as far as remolding.....
Rico
Hawk:
I would have to disagree with you on that being on pav or supplements like ginkgo could lead to a more scarring if injure......I would think that what ever the delivery, if it is oxygen rich blood and some other mystery chemical that pentox or the pav combo delivers, which are blood thinners, they would curtail any scarring, this is why I believe it is a good preventive program if one is having sex ect....any trauma.....this is why doctors put you on it right away, and having thin blood isn't going to cause trauma, but if it does happen, well you have it working right now, and it is a great for anti inflammation, I probally wouldn't have peyronies if I was on it to start with....
Rico
That would be good if it were true, but what we KNOW is that whole blood causes scaring, adhesions, etc. Clearly blood thinners cannot cause trauma, but during trauma, a person on blood thinners is more likely to bleed and introduce blood to the tissue. We have no evidence to suggest that this blood would not do what blood always does, which is contribute to scar formation. Just because these products contribute to healing by reducing TGF and bringing oxygen through the capillaries when they are in the circulatory system, is absolutely NO reason to think this whole blood would not be harmful if spilled into the tissue.
Now if there is some logic, or evidence, or even statements by known experts, to the contrary, I will happily consider that.
Hawk:
My thoughts go along these lines because I read that if one gets Priapism(erection over four hours), that they put him on the PAV(pentox/arginine/viagra), to prevent scarring.....why would they send this blood mixture to a damage area if they felt it wasn't preventing damage to the tissue?
Rico
Rico,
I think you are missing what I am saying or possibly misunderstanding priapism. Prolonged erection starves the penis of oxygen. Initially the blood is depleted of oxygen because it lays there without circulating. Normally one of a couple procedures will correct the condition. A shot of Neosynephrine will constrict the arteries and reduce penile pressure allowing the veins to drain the penis. If not, they actually attempt to manually shunt the penis and drain it. The only thing that prevents this from working is if the blood has actually begun to coagulate. in such situations, pentox/arginine/viagra would begin to squeeze blood through these compromised (blocked) blood vessels and restore flow and oxygenation. It would also reduce the inflammation response. This would clearly be a very positive thing and has nothing to do with spilling blood out of the vessels into the surrounding tissue where blood does damage.
All kinds of good things are in the blood, and other good things can be put in the blood in the form of drugs. These are designed to work as the blood functions within the circulatory system. They are not made to be spilled out into a wound and pool there. Regardless of what blood may contain, no surgeon would consider whole blood laying at a trauma site to be a good thing. None of these drugs can perform their intended function in leaked or spilled blood, yet spilled whole blood does cause scaring. For documentation on this point I refer you to the papers on scaring in our resource library.
If there is trauma while taking these drugs, they would no doubt contribute to leaking blood. That is why extreme caution must be used with the VED with Pentox.
I have tried to do as much research as possible before taking any of the current meds, supplements, etc, I am on. I have just started taking pentox 2 days ago w/ no ill effect so far, and have been taking 1 dose of 120mg ginkgo daily for over a month. I have not seen any info on these two drugs having a negative interaction w/ each other. My Dr. also knows all the various pills I am taking, and did not say anything. Maybe he missed the ginkgo on my list. crs
Hawk:
Blood is a tissue, highly specialized and composed of many different kinds of componets....
I agree that using the VED along with pentox or extreme blood thinners that one has to be careful of not too much vacuum....
White cells are not limited to blood also....
Hawk I feel that the formula, being ginkgo or pentox and Viagra or cialis and the arginine is like you said to shut down the inflammation and prevent scarring....the studies seem to show that once this is accomplish that the additional oxygen rich blood which is full of nutrients helps heal and in some cases rejuvenate new tissue to the injure area....
From the first splitting of the first single cell animals millions of years ago this is what God gave us to survive, this blood clotting is are survival...peyronies is a example of it gone arye.....the pav formula might just reset your body to address this issue in a more normal way, and this once again is by shutting down the inflammation process and start the healing....
In my mind especially in the first 12 to 18 months of the condition if one can do this the better chance one would have of recovery or to lessen his condition....but I also believe in retracing a injury also, this is where the body when given the right nutrients will go back and heal a old scar....
The new tissue where the scar was, well this is the issue with the lost of elastics, and this is where the VED comes in.....
I wasn't sure if I got the cart before the horse, using the VED and not sure if my plaque was stable....then I went on the pentox and had some leakage so had to stop the VED, I feel that doing the pentox/cilias/arginine for several months to see what develops and then I can always restart the VED program with my old supplements, ginkgo and opc's ect....
Rico
csup,
You are correct, it IS OK to combine ginkgo and pentox under physician supervision AND the two may very well act synergystically in terms of TGF-beta-1, etc. So I will modify my previous post accordingly. And the problem is indeed related to 'blood thinning', however it seems that ginkgo and pentox thin the blood in different ways, thus, under physician supervision, should not present a problem. Thank you for setting me straight on this, I think we are all learning a great deal from each other, especially in terms of these little nuances.
And I really hope there are some urologists reading this forum because I think they could learn a great deal from it as well in terms of understanding what their own patients are using to deal with Peyronies, what seems to be helpful and what definitely isn't, and also in terms of being able to spot applicable current research.
Buy the way, how does this combination seem to be working for you so far? Are you making any detectable progress? Please share!
-George
PS - A study involving people taking both Coumadin (the mother of all 'blood thinners' ) and Ginkgo found 'minimal' 'interaction'. So the concern about Ginkgo and Pentox together is probably exaggerated. Nevertheless, as Hawk has pointed out, it is prudent to be aware of these factors and use appropriate caution.
George999,
I was getting worried when I read your post that I had missed some vital info on this combo during my research. The only thing I did note on the pentox was a concern when taking a standard blood thinner like coumadin or wafarin. As you stated, it is always good to have info coming from all sources ,as it can be easy to overlook things. I am on other meds for cholesterol and bph, and it can be hard keeping it all straight.
So far, I have not noticed any effects from the pav cocktail or the tv I started last week. Sometimes when I do an exam it feels smaller and softer, but then I will check it later, and it feels just like day 1. So I will continue to gulp pills and slather goop, and keep a journal of my progress(???). One thing I am happy about is that my stomach and system seem to be handling all the meds very well. Maybe it's the zantac. crs
csup,
The up and down back and forth thing with Peyronies is just typical. I have experienced nearly complete remission only to have it suddenly return again. But I can tell you, that after dealing with it for three years now, mine is in better shape than it was six months ago and definitely in better shape than it was a year ago, and thats what is important. So the ups and downs are to be expected, what is important is the long term results. I think that both Pentox and Ginkgo have great potential for positive long term results. At this point I have not noticed too much positive effect from the Ginkgo, but I am only a week into it and am only taking a small dose. My best results so far have come from Vitamin E and Arginine. The results from Vitamin E have been very consistent, but the results from Arginine, while impressive, have been spotty and hard to manage. At this point I am planning to start on a new Arginine product, SANs VasoFlow http://www.sann.net/vasoflow_sci_info.html (http://www.sann.net/vasoflow_sci_info.html) which looks very interesting in terms of its potential benefits for Peyronies. I will let you all know how that turns out.
- George
George:
I know you like to take small doses, but with ginkgo you really need to take 60mg twice a day for several weeks to see the results one is looking for....this not that much....
Rico
I have been taking 60mg once a day with no apparent problems ... as of today I am upping to twice a day ... -George
Quote from: George999 on November 28, 2006, 11:42:32 AMThe dry aloe in capsules is actually a very harsh laxitive that you don't want to risk. It is not recommended by the medical community and I really don't know why the even sell it. It is so harsh it can be dangerous.
- George
I would say that this bears repeating.... oops - gotta run!!
Tim
I, along with others on the forum have tried Korean red ginseng. A new source for this item is www.swansonvitamins.com They have quite a large number of different herbs, spices, roots, leaves, seeds, etc. in standardized & non-standardized form. Their printed catalog is very interesting.
Hi Forest,
The literature I've seen on Potaba is not so much that it's going to cure you, but it significantly reduces your odds of getting worse. In the year-long study published in European Urology, 2005, Weidner et al. found that there was a slight change in the number of people who got better in the Potaba group versus the placebo group (53% versus about 45%), but there was a big difference in the percentage of people who got worse (about 3% of the Potaba group versus about 32% on the placebo). Overall, plaque size decreased by more on average in the potaba group, but the big impact seems to be in keeping you from getting worse. The difference in the treatment versus placebo group seems to be noticeable after 3 months of treatment.
Personally, I think I stopped getting worse after being on it for a month or so, but one sample point does not provide a lot of information. And I also can only take the powder form as taking 24 pills/day makes me queasy.
JW
Quote from: forest on November 28, 2006, 10:41:00 AM
Hi everyone, Forest here. Newbie to the group. Sorry if not doing this post correctly. Still learning the board and format.
Dx with Peyronies about 8 months ago. Had sudden onset 45 degree lateral curvature. Condition has not worsened nor improved while following urologist recommendations of 800mg VE, 1000mg Calcium, 50mg Zinc, hold extra VC, and 15 minute manual massage of plaque per day. After 3 months on this regimine with no change, I opted to try the Potaba which I have been on now for a month with no change in condition as of yet. I am wondering if anyone has advice/feedback for me on any of this treatment. Also, is it true that the type and quality of the vitamin E makes that much difference? I have spent way to much money following this rumor for other health conditions without any positive differences and therefore, I am reluctant to do so with VE unless you know of actual positive results. Also, what do you think of the manual massage idea? Seems detrimental to me. And, lastly, what do you guys think of Potaba?
Appreciate the help and look forward to getting to know everyone.
Thanks,
Forest
Forest
At the onset of Peyronies Disease, I was prescribed 12g/day Potaba which I took for about 18 months. It did not cure the problem for me, However, there seems to be evidence from properly controlled trials that it does help some people.
Good luck
Percival
I am going to try the pentox/ L-Arginine/Cialis? routine soon. Does anyone know if cialis could take place of viagra since both do similar things. Also how much Pentoxifylline should (I) advise my urologist to prescribe me?
Hey Guy's,,,kimo here.....I have 3 brand new bottles of Potaba , 250 capsules ea 0.5Gm per capsule, and then realized could not take it because of another existing condition...If any one would like to pay the postage i will give them to you...My ins coverd most of it and i had paid 30.00 for the presc......If anyone is interested just write me on my e-mail address...
Thanks and blessings to all and Mele Kalikimaka,,,,,,,kimo
I believe it is 400mg 3 time a day (without going to look). But, a urologist will have this info. He will look it up.
The standard dosage according to Dr. Levine on the APDA's ask the doctor section is 400mg 3 times per day, to be taken with food... If you don't you will more than likely have an upset stomach.
ComeBackid
Quote from: pudder135 on December 10, 2006, 03:16:08 PM
The standard dosage according to Dr. Levine on the APDA's ask the doctor section is 400mg 3 times per day, to be taken with food...
According to the papers that came with my perscription, 3x/400mg/day is the standard dosage, but don't be surprised if your Uro starts you at 2x. Mine did. There is no "standard dosage" of Pentox for peyronie's (though most recent studies have used 3x/400mg) because this drug is still a relatively new, and mostly unknown, treatment for Peyronie's. It's still up to your Uro to make his best (or, safest) guess.
I want to try some natural supplements to have a shot at my fixing my Peyronies Disease. I was wondering what natural supplements work? Also what prescription meds are the best to ask for when I see my doctor? Also is L-Carnitine the same thing as ALC?
My doctor put me on the standard dosage, which is 400mg 3 times a day. My doctor doesn't seem to think that pentox ever hurt anyone, so you might want to check into getting that dosage increased, unless you have some other health condition that precludes it.
ALC is "acetyl L-Carnitine". There are other forms as well, including propionyl L-Carnitine and plain old carnitine.
Tim
So If I go to the shop and get somthing that has L-Carnitine on the label, this will be the right stuff? Does this stuff actually help the situation? Ive started taking arginine - 500mg twice daily and im taking Levitra every 48hrs in small dose, just to get it up.
Quote from: Tim468 on December 11, 2006, 01:55:33 PM
ALC is "acetyl L-Carnitine".
In response of does it really work. It is not a secret cure for Peyronies Disease. One
very small study indicated it had a significant impact. Myself, and some others have seen a direct correlation between starting and stopping ALC with turning pain off and on. I take it between 2000 and 3000 grams per day in divided dose.
I was confused as you in the beginning, I was buying L Carnitine, this is NOT Acetyl L Carnitine. They offer a Acetyl L Carnitine I now get mixed with alpha lipoic acid, you can look into that as well.
ComeBackid
>>So If I go to the shop and get somthing that has L-Carnitine on the label, this will be the right stuff?<<
No, that will not be the right stuff. If you want acetyl L-carnitine, then buy that. The acetyl group makes it a different supplement than plain old L-carnitine.
Tim
Is anyone else having trouble getting orders through to Bulk Nutrition? I've called the 800 order number numerous times over the past weeks and leave my number, as the recording requests; however, I get no return call.
Does someone know of a reputable alternative? I like Bulk Nutrition's rock-bottom pricing, but I also need the product!
I have been using iherb.com in southern california for the past few months.. They don't have quite as large a selection as bulk nutrition and their prices are just a tad higher, but they have given me great service. And orders of over $100 ship free. So you might want to check them out. Sorry you are having problems with bulk nutrition in north carolina. They have a great selection and indeed great prices, but if they don't deliver or communicate, thats a problem!
- George
I got an email flyer from BN on the 11th of Dec.
Thanks George and Liam for your input. After posting here this afternoon, it occurred to me to send Bulk Nutrition an e-mail, and I got a phone response almost immediately. Dennis apologized, saying they'd been having been having trouble with their phone service for weeks, and he gave me free shipping to make up for my pain and suffering. I told him I was in such misery that only a $50 gift certificate would make up for it, but he didn't go for it!
I want to just share a note of encouragement and an update. Over the past few days I have noticed an unusual level of burning pain in my plaques (I normally don't experience any pain). I was a bit concerned, but since I have been meticulous in taking my anti-inflammatories, I just decided to wait it out and see what happened. And then last night I noted a significant reduction in the size and effect (the characteristic bend straightened strikingly) of those plaques, especially the one in my septum which has been the most stubborn of the two. This seemed odd, as I had always sort of associated pain with progression rather than regression. I also want to include in this post my most recent supplement modifications (So far I have experimented with over 30 different supplements and have been attempting to weed out those that are ineffective or not cost effective). Supplements have been my primary tool in dealing with the Peyronies issue.
1) Some weeks ago I increased my Vitamin E intake to 1600IU per day and then to 2000IU per day, taking it as part of a 'stack' in order to ward off unwanted dangerous side effects.
2) Also a few weeks ago I began taking Ginkgo at 60mg per day and then upped that to 120mg per day. Rico swears by it and I can't help thinking that it is contributing to this apparent new level of success.
3) About a week ago I began taking SAN VasoFlow, an engineered Arginine formula in a soft gel. I am taking 1 soft gel before rising in the morning and one more before evening treadmill exercise. VasoFlow, by the way, has some very interesting ingredients. 1) Di-Arginine-Orotate which is an innovative Arginine compound designed to cross cell membranes easily and permeate tissue with Arginine NO substrate that would normally not be permeable.. 2) L-Arginine-Ethyl Ester DiHCl which is another innovative Arginine compound designed to survive stomach acids without breaking down and, again, to cross cell membranes easily and thus better permeate tissue. 3) L-Histidine HCl, a synergystic agent in NO production. 4) Ornithine-Alpha Ketoglutarate, another NO synergist. 5) Proanthocyanidins otherwise known as OPCs, powerful antioxidants intended to clean up any free radicals caused by increased NO generation. 6) Cnidium Monnier, a powerful PDE-5 inhibitor and cGMP up regulator, 7) L-Norvaline, an Arginase inhibitor. In addition, this is a soft gel enclosed liquid formulation designed such that some of the ingredients are more readily available than they would be in dry form, BUT they have also suspended some of the ingredients in time release particles in order to potentate their effects to the max. I am just really convinced that this is the ultimate Arginine formulation for Peyronies at this point and have great expectations as to its potential positive effects.
My next venture will be Magnesium Oratate, which is purported to have the unique ability to nourish elastin in the vascular tissues making them at once softer and stronger.
I have noticed that there have been people around here who are successfully combining Vitamin E with the PAV cocktail or Ginkgo with the PAV cocktail WITH their doctor's knowledge and approval. I can't help but wonder if these added supplements might have the potential for greatly adding to the effectiveness of the PAV cocktail. I am also wondering if the VasoFlow might not be an interesting substitute for the Arginine in the PAV cocktail? It would be interesting to know what someone like Dr. Lue might think about that. There are just so many interesting possibilities everywhere on the supplement front.
- George
Hey George,
Would you please post a link to the SAN VasoFlow product? I (and probably some others) would like to research it.
---PJ
Heres the link:
http://www.sann.net/vasoflow_sci_info.html (http://www.sann.net/vasoflow_sci_info.html)
George, I really appreciate your thoughtfulness and attention to detail. It is extremely encouraging that you are getting better, too!
Tim
Anyone know what the recommended dosage of Pycnogenol is? I'm planning to take this with L-Arginine and have 100 mg capsules but don't have a sense of how I should do dosage. Any suggestions?
Has anyone seen any encouraging results from taking pentox?
Quote from: pudder135 on December 16, 2006, 04:34:43 PM
Has anyone seen any encouraging results from taking pentox?
I've noticed a lot more "fullness" lately. Part of this is probably due to Pentox. I'd also attribute at least some of this to daily sessions of groin massage which help to increase the circulation in that region. I haven't noticed any improvements in my curve but it doesn't seem to be worsening either.
Danny:
For the benefit of this 77 year old mind, please elaborate more on what you term groin massage.
Thanks, Old Man
George I'm glad that you are seeing improvement....my research on ginkgo showed that you can do up to 240mg a day....I was taking 180mg per day, 60mg three times.....
I read that Lue doesn't have you do anything but the pav....my doctor asked me if I was doing any drugs when he prescribed the pentox, I told him about ginkgo and other supplements, and he said,"Any real Drugs":).....
Before adding something, maybe the increase in dose might be the ticket for you on the ginkgo...
I have been on the pav cocktail now for a month...for me it has been a step backwards....it threw me off my diet and exercise program, over all health, upset stomach ect.....I can take two a day, with milk and bland food.....
I can't also do the ved with it, cause red dots on head of my unit if use with pentox...this didn't happen with ginkgo?
I know one has to be consistent in anything they do to be successful, and with are program, and George you are good at that......I feel like I failed by switching over to the pav program....now I'm at the crossroads of switching back to what was working or wait and see with this and the nasty taste and effects of pentox....it is cheap....$10. per month on my insurance....but once again my over all well being has been effected by it....
Has anyone seen any results from it that are positive? The fullness is there from it, but once I went to 180mg of ginkgo I was also getting this effect.....
I was told that many people give up on the VED after two months, or hit a wall....I wonder if this is like supplements also, or pav cocktail.....it seems one has to stick with a program, the hard thing is not knowing what to do, my gut told me to stay on the ginkgo and ved and exercise program and diet...I was getting good results.....kept reading post on pentox...the best thing out there ect....I do believe it was a mistake for me...now I'm at a crossroads with it.....I miss eating really good food, spicy, curry ect....and the exercising, I also think maybe the other supplements might of given me a sense of general well being, OPC's are good for you.....the taste of pentox is such a chemical...nasty.....
Rico
Rico, dealing with Peyronies (or any other fibrotic disease) takes dedication and persistence. You really can't go by what you see. You have to pay attention to what you know. And you can only 'know' by reading the research. Right after I posted that very positive post, my own situation again regressed. But that is typical of Peyronies. And it does not discourage me, because each time it gets better, it gets better than it was before.
As for your own situation, 1) Pentox is known to work, that is the important thing. 2) There is at least one person out there posting on this forum who is taking Ginkgo concurrently with Pentox and apparently not having any overt problems. 3) I think there is probably no reason you could not take Vitamin E with Pentox as long as you buffer it with Vitamin K. 4) I am not sure why the Pentox is interfering with your exercise routine and former diet? 5) To prevent the 'red spots' you should be taking Rutin, proven to strengthen capillaries (other supps reputed to strengthen capillaries and prevent bleeding are OPCs, and magnesium orotate, and even Ginkgo itself). Another supp PROVEN to strengthen capillaries is horse chestnut, *BUT be very careful with horse chestnut as it has anti-platelet properties and can be dangerous when taken with Pentox - added 01-15-07 by George*. Some things to try for all you out there struggling with how to do Pentox and VED at the same time. 6) I really don't see how OPCs would conflict with Pentox.
But again, EVERTHING known to counteract fibrosis works SLOWLY, VERY SLOWLY, so conquering this disease is a matter of patient persistence. Don't give up, just keep pushing away at it and eventually you WILL see progress. And beware of high priced products that make extravagant claims. They are ALL rip offs, guaranteed.
Hope you all have a great Christmas!
- George
PS - I am already considering upping the Ginkgo. Its at the top of my list right now. I have started the magnesium orotate as well, will see how that works out. The VasoFlow is working splendidly at this point, much more action out of a lower dose of Arginine.
Quote from: George999 on December 18, 2006, 05:30:13 PM
The VasoFlow is working splendidly at this point, much more action out of a lower dose of Arginine.
George,
I am interested in having you expound on exactly what you mean by that statement.
Thanks
I am just finding it more more consistent in providing the kind of response one would expect from Arginine. I'm sorry I was so vague, I should clarify additionally that I have seen no specific sudden positive effects from it on my Peyronies condition. But the general Arginine effect of observable vascular dilation, lowered blood pressure, etc. is more profound and less erratic in my experience so far (on previous occasions with other products, the Arginine actually seemed to be raising my blood pressure - weird). It also tends to be more long lasting. I realize all this is very subjective, but I have tried nearly a half dozen different forms of Arginine so far and this is the first one that is giving me the results I have expected. I have fairly severe hypertension and know that I am very likely Arginine resistant and that this is not true of everyone. But from my subjective perspective I am very happy with it and to tell you the truth, due to my past experience, I was almost expecting to be disappointed once again. Hope this helps.
- George
Does anyone here know anything about Bromelain? Does it work and what is the dosage? Ive heard it can help Peyronies Disease but they also said to not take it for more than a week to 10 days? Does anyone know what that means? ???
Hey ComeBackid,
Its only been three weeks on Pentox and I had to taper up due to GI issues so its far too soon to tell. I will posts in a couple months.
---PJ
PJ,
I haven't had any problems keeping the pentox done, I always take it with food and the l arginine to be honest. I have noticed my legs feeling weird and getting restless, causing me to have to get up if I'm sitting down and walk around. I don't know if this is from the blood thinning effects and increasing circulation in the lower half of my body- anyway its a pretty weird feeling. I did have restless legs before this, but this seems to have made it worse. If i'm standing up and walking around it doesn't seem to bother me, only when I'm sitting down. The feeling is really more in my ankles and feet not really my legs. Other than this I've noticed better flaccid hang and more full erections- no other side effects here. Keep me posted on your progress and side effects and if you notice your curve improving at all.
ComeBackid
Bart, The following is from the Austin Texas Diagnostic Clinic (Urology): Take 750MG of bromelain 3 times daily on empty stomach. It helps prevent the deposition of fibrin which is believed to cause the conective tissue to thicken. It may take up to 6 weeks of using bromelain before results are noted. Their page on peyronie's is at http://www.adclinic.com/Doctors_Specialties_maps/Urology/peyroniesdisease.htm They do not say if the bromelain should be enteric coated or not. If it is not enteric coated this amount of bromelain could potentially cause a lot of stomach distress. There are many sources of the enteric version on the internet. There is also a topical version of bromelain but I would suggest a lot of research before trying it. It may be a prescription item; not sure. Mark501
George you asked me how pentox could effect my diet and exercise program, when one has GI issues it effects there well being and this will effect your exercising and diet, if you have acid reflux it is hard to work out....and of course GI issues will effect what you eat.....it also effected my sleep, waking up with acid reflux.....
After a month and cutting back things have gotten better, but still have to watch diet and can't work out for several hours after taking pentox....
I think pentox works for getting to your penis for blow flow....and it has been said or shown to have effect without the blow flow on rats.....I don't know if it is for me though....I have heart burn right now, somedays it just doesn't take well.....I never had stomach problems or acid reflux before starting the pentox....I feel for people who have this problem, a sour stomach can effect everything you do....
The good news with it is that some people don't have any bad effects, I see that PJ is having GI issues also....
Rico
Mostly I just had to taper up the Pentox dosage, starting with a nightly tablet. Then a few days later I added one in the morning and now I am up to the full three times daily dosage and tolerating it well. When I started off all at once, whew... not so pleasant. But now only ocassional heartburn controllable with maybe a single tums a day. I hope in a week or two, to tolerate the Pentox completely.
As far as restless legs, nothing like that. I have noticed a little bit of flushing for maybe an hour after I take it. No difference in erection to note at this time.
My main problems has been daily Cialis setting off my migraines. However i saw my migraine doctor today. He's the best doctor I have ever met and he is working with me so that I can continue with the Peyronies treatment, even though its messing with the migraine treatment. Since this means additional abortive painkillers and muscle relaxants, you understand what a professional he is. He did say he hasn't encountered Peyronies since med school, not that its his specialty, and was quite interested and empathatic.
---PJ
Actually, lately I've been wondering if my Pentox pills are dummy pills or something. I'm 12 weeks into taking them, and I never notice ANY effect from them anymore, and even the effects I used to feel (fuller hang & fast, full erections) have been gone for about the past couple weeks. Maybe it's the colder weather, but my unit seems back to its tightly constricted, turtling self of a few months ago.
About 10 weeks ago, 2-3 wks into my Pentox treatment, I ran out of ALC and didn't replenish my supply since I figured Pentox would carry the progress from there. But since then, I've noticed a progressive traveling of my bend toward the side, so that when erect the bend leans toward the left (only slightly). And slight bottleneck when partially erect. All this worsening, while consistently on Pentox. So I'm wondering, should I start back on ALC?
Anyhoo -- this all seems illogical, considering Pentox reputedly is more effective while in the active phase. So far I'm less than impressed. But I'm hanging in there for the long term. My checkup with my Uro isn't for another 6 weeks, so I'll keep doing what I'm doing. Which is: Pentox 2x/day, Vit. E 800IU/day, L-Arg 3g/day, plus a fish oil & a multi.
myrddin:
Is there a reason you are not taking the cialis or viagra? I know you said you are not getting fuller erections....the pentox should be at full effect now after three months...that does seem strange that you hang is gone now....could be stress....holidays and all......
Rico
I'm wondering if red wine would be just as good as some of these other pills. Look at this article: http://www.sciencedaily.com/releases/2004/12/041208082150.htm
Re Pentox: Sorry you all are having such a difficult time with the Pentox. While there is no question about the effectiveness of Pentox over the long term (It has been well demonstrated by research), it does have nasty side effects and the problem is to achieve an effective dose and not succumb to the side effects. This is why it is usually prescribed WITH other meds and supps and why it is important to have the support of a caring physician who is willing to improvise as necessary to counter the side effects and eventually achieve success. Thanks so much Rico for explaining the connection, I guess I was a little dense not to pick up on it. My apologies and I pray that you are able to get your side effects under control.
Re Bromelain: Anyone contemplating using Bromelain to control fibrinogen should also look into Nattokinase. I believe it is just as effective in the end and it has zero side effects. I have been using both Bromelain and Nattokinaise and I am planning to quit the Bromelain as soon as my current supply is finished because it is so harsh on the gastro tract when used at the recommended amount and Natto is to my knowledge a better and well proven approach. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8593442&dopt=Abstract (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8593442&dopt=Abstract)
Re Red Wine: I think you would have to drink a lot of Red Wine (way too much) to get the beneficial effects that are available from common OPC/Pycnogenol/Resveratrol supplements.
I started taking pentox a little over 2 weeks ago. I had been and still am taking zantac 150 twice a day for other stomach related problems. I started the pentox at the 3 dose/day (400mg ea) regimen and have not had any side effects. I do make certain to take it right after a meal or at least a good snack. I have not noticed any real change since I have been taking it. I did read that it might take up to 12 weeks to see any improvement, but this was for the claudication condition for which it is normally prescribed for. Sometimes it feels like my plaque is smaller, but that could be wishfull thinking on my part. I do still experience a low degree of pain during an erection. I am also still applying the TV, but am not at all convinced this is doing anything besides leaving a coating on me. Time will tell. crs
I've seen quite a few of you guys say you are having an upset stomach in regards to the pentox. I was on it like two months ago for about a month- I stopped so I could complete the VED protocol. I was getting an upset stomach then pretty bad. I've now restarted the pentox with under a month left on the 26 week protocol for the VED, no upset stomach this time- I always take it with food. I did this before however, and I still got an upset stomach. It was pretty bad, I would throw up my dinner. Try taking the pentox with the l arginine supplement, I do this as well and it seems to help some. I also drink a glass of water before I eat some food and take the pentox- I didn't do this before and it may have an effect on one getting an upset stomach or not.
ComeBackid
I can only find Bromelain in 500mg capsules so i cant cut them in half. How do you take 750mg if you cant cut it. Has anyone else heard of Bromelain in tablet form or different doses?
Lots of tablets here: http://www.iherb.com/store/ProductsList.aspx?c=Herbs&cid=bromelain (http://www.iherb.com/store/ProductsList.aspx?c=Herbs&cid=bromelain)
Quote from: Rico on December 19, 2006, 12:50:01 PM
Is there a reason you are not taking the cialis or viagra?
Yes. My Uro did not prescribe it. At the time of my appointment (end of Sept) this whole PAV "cocktail" concept was really new. I'd never heard much about it, and I'm sure my doc (Dr. Carson at UNC-Chapel Hill) had never heard of it. Most of the successful studies done on Pentox and Peyronies, don't involve all 3 ingredients, but just report on the effectiveness of Pentox.
But it's something I can discuss at my follow up in 6 weeks: Why do you prescribe only 2x/day? Why no Viagra, like Dr. Lue recommends?
For now, I have no choice but to, ahem... "stay the course."
I did pick up some more ALC since I associate my worsening symptoms with my discontinuing of it. Worth a try.
Hi Rico-Merry Christmas Brother.. It has been a while since I have been on the forum... How is your condition now- since you started the VED, and other treatments- please let me know..
Hopeful
I was told that many people give up on the VED after two months, or hit a wall....I wonder if this is like supplements also, or pav cocktail.....it seems one has to stick with a program, the hard thing is not knowing what to do, my gut told me to stay on the ginkgo and ved and exercise program and diet...I was getting good results.....kept reading post on pentox...the best thing out there ect....I do believe it was a mistake for me...now I'm at a crossroads with it.....I miss eating really good food, spicy, curry ect....and the exercising, I also think maybe the other supplements might of given me a sense of general well being, OPC's are good for you.....the taste of pentox is such a chemical...nasty.....
Rico
[/quote]
Excellent Post George- You have done a geat deal of research.. This sounds very encouraging!
Merry Christmas!
Hopeful
Quote from: George999 on December 15, 2006, 02:13:01 PM
I want to just share a note of encouragement and an update. Over the past few days I have noticed an unusual level of burning pain in my plaques (I normally don't experience any pain).
Hopeful:
Thank you for the holiday cheer and right back at you brother:)...
I stopped the VED treatment after several weeks on the pentox, this was due to the fact that I was getting red dots on the head of my unit....there is a name for it....it escapes me now....but I'm still on the pentox, twice a day along with some ciliais and arginine...... my thoughts where that I could always remold with the ved, but since I was in my early stages...now eight months, it was best to use the pentox..... at this point I feel it is all a crap shoot.....
Sometimes one has to learn how to live with a condition than try and change it....I thought about peyronies 24/7 for six months, this is not healthy.... I see this with many others, they go after it for months and then back off...one has to get on with there life...
In the early stages the forum is a great place for someone to go for support and knowledge.... what you do with it is your choice....
Rico
Rico,
The name is petachie, the pentox thins the blood and this is why your experiencing this, I have a couple of dots here and there, I noticed them as soon as I added pentox to my regiment. I just now pump more lightly.
Myrddin,
You are right the study I saw done by Dr. Lue was done with just pentox. I don't know why people keep insisting it included pentox, l arginine, and viagra, this is simply not true. The positive results seen in the lab dishes were with just pentox, and the man who got rid of his calcification was on just pentox from what I read. It does seem that adding l arginine and viagra can't hurt though. I know for myself and many others I've talked to, the affordability of viagra is a big problem for this treatment protocol.
ComeBackid
Does pentox aggravate working out or exercising? I know when I had tendinitis of my ankle, grape seed extract would inflame it. Do you get used to the meds and exercise like usual?
I've beeon on pentox now for a handfull of weeks, I"m taking 3 pills per day. I've been running about a mile most of those days. I've had virtually no side effects from pentox. The only thing I experienced was restlessness in the legs- mainly the ankles and feet, it felt funny. This could be due tot he blood thinning effects and the increased circulation in the lower half of the buddy. The positive effects I've noticed so far are better hang when flaccid and more solid full erections. I have less than three weeks left of my VED 6 month protocol so I"m doing that. When I started pentox I also started L Arginine, which I"m taking about 2grams daily.
After some searching I found this chart of side effects from trental, it was interesting to see the high percentage of people who experienced nausea.
http://www.rxlist.com/cgi/generic/pentox_ad.htm
ComeBackid
Quote from: pudder135 on December 25, 2006, 12:37:31 AM
After some searching I found this chart of side effects from trental, it was interesting to see the high percentage of people who experienced nausea.
http://www.rxlist.com/cgi/generic/pentox_ad.htm
ComeBackid,
Am I misreading your link? To me it shows only 2.2 patients with nausia. Even the placebo caused .8 on the time release. That would be only one out of every 60 men experienced more nausea from time release pentox than from the palcebo. This seems VERY low to me.
Also note-worthy is that there was only a 2% difference in the rate of patients that discontinued use between the placebo group and the pentox test group taking immediate release pentox.
Hawk,
I was viewing the data on the immediate release caps. But yeah looking over the data on the commercially available caps nothing really sticks out at me as being overwhelming. I've noticed for myself the second time around here on pentox that I don't get an upset stomach as long as I take my pills with food and a full glass of liquids. The chart concures with my observation of having virtually no side effects while on pentox- other than the weird feeling in the lower half of my legs I'm having.
ComeBackid
Sorry, been away from the forums for a while and just saw this...
So what I do is with either my thumbs or my index and middle fingers together I do fairly firm circular motions on pretty much my entire pelvic region. I'll do this for about 20 minutes once a day or so. What I have noticed is that during and after a session I'm almost always hanging very, very full. I also seem to be getting more daytime and nighttime erections. Some of this no doubt could be due to Pentox but I think the massage is helping as well. I skipped it for a couple of days last week and noticed that I wasn't as "full" during those days.
This seems like one of those things that almost certainly won't hurt and could be significantly helpful in terms of increasing circulation. Since that is also one of the main benefits of Pentox it seems like combining Pentox with massage might make a lot of sense.
Quote from: Old Man on December 17, 2006, 04:43:05 PM
Danny:
For the benefit of this 77 year old mind, please elaborate more on what you term groin massage.
Thanks, Old Man
Hello again everyone,
It has now been about 3 months since i started Pentox three times a day. When i started the pentox i stopped using Potaba amd Verapamil and i must say that i have seen more terrible things happen over the past three months than in the entirety of my disease. EVERYTHING is getting worse. I am not going to turn anyone away from trying pentox, but i would like to say that Potaba and TV kept my condition remotely stable for around 6 months. Now, after all those months, i have seen terrible results. IMHO potaba is a way stronger shot at your goals. I am still taking Pentox 3 times a day but i have begun to take TV again. Just thought i would check in and let everyone know whats what. Sorry for my negative news, i usually try to stay positive.
-Tyler
PS.. i was taking Minocycline for acne before i had Peyronies and i stopped when i got it because the guys at Peyronies Disease Labs said it was a bad idea. Has anyone read anything about the Tetracyclin family and Scar tissue/Fibrosis.?
Tyler,
Sorry to hear about your negative results w/ pentox. I have been taking it for about a month now along w/ the other 2 pav ingredients, and also applying TV. If I can trust my fingers, I am actually feeling a slightly smaller plaque nodule. This just shows how frustrating this disease is. What seems to work for one person completely backfires on another. That is why it is taking so long to find a good solution. Hope your old treatment plan gets you back on track. crs
Quote from: pudder135 on December 23, 2006, 12:56:27 AM
I know for myself and many others I've talked to, the affordability of viagra is a big problem for this treatment protocol.
ComeBackid
I've actually switched over to horny goat weed from viagra due to cost. my insurance won't cover it at all. I'm fighting with them on that, but for now I'm taking 1g Horny Goat Weed 3x daily in place of 25mg viagra 1x daily.
Tyler, are you still taking the Vitamin E with the Trental as Dr. Lue recommended? If so, what brand and type? - George
PS - I would really try to work with Dr. Lue on this. He is one of the best out there and Pentox is a proven product. Three months is nothing, this takes a long, long time to resolve and patience will benefit you mightily in the end. But it is VERY important that you are using the right type of Vitamin E. Vitamin E is known to be a powerful synergist with Pentox which means that it can significantly enhance its healing effects. I would also recommend you use Mangosteen juice, a powerful anti-inflammatory agent which should help halt any further progression.
George 999, what dosage of Vitamin E (natural mixed tocopherols) would you recommend for use with Pentox? Mark 501
How is it working??- Please advise
Hopeful
ComeBackid
[/quote]I've actually switched over to horny goat weed from viagra due to cost. my insurance won't cover it at all. I'm fighting with them on that, but for now I'm taking 1g Horny Goat Weed 3x daily in place of 25mg viagra 1x daily.
[/quote]
QuotePS.. i was taking Minocycline for acne before i had Peyronies and i stopped when i got it because the guys at Peyronies Disease Labs said it was a bad idea.
Someone reresh my memory about Peyronies Disease Labs.
Quote from: mark501 on December 27, 2006, 06:06:58 PM
George 999, what dosage of Vitamin E (natural mixed tocopherols) would you recommend for use with Pentox? Mark 501
I believe the most important factor is that you use a 'broad spectrum' E with all eight tocos. I use an relatively inexpensive one: http://www.iherb.com/store/ProductDetails.aspx?c=Herbs&pid=NOW-00811 (http://www.iherb.com/store/ProductDetails.aspx?c=Herbs&pid=NOW-00811). As far as dosage, you should discuss that with Dr. Lue. But these newer broad spectrum Vitamin E products are far more effective (at least in my experience) than the simple mixed tocopherol types. And the ratio of alpha-tocopherol to gamma-tocopherol is important. There are also other good similar products like, for example, GNC Isomer E. But the softgels themselves should be brown horse pills, not the typical pea sized tea colored products. Only the elongated softgels contain enough product to be effective. - George
Quote from: Liam on December 27, 2006, 11:32:33 PM
QuotePS.. i was taking Minocycline for acne before i had Peyronies and i stopped when i got it because the guys at Peyronies Disease Labs said it was a bad idea.
Someone reresh my memory about Peyronies Disease Labs.
Well, for starters, there is an interesting topic on this very forum entitled: Report on PDLabs and Topical Verapamil. You might start your refresher course there? But who knows, they might actually be right about Minocycline being bad for Peyronies. But for sure I can tell you that Dr. Lue is miles ahead of Peyronies Disease Labs when it comes to treating Peyronies Disease. I think that Tyler is in good hands with Dr. Lue and that he should not give up too quickly. I think he needs to communicate with Dr. Lue his frustrations and be receptive to Dr. Lue's responses. I think he also might ask Dr. Lue why he is not being prescribed Viagra and Arginine along with the Pentox. I am sure Dr. Lue must have a reason for not including these in Tyler's case, but I think it is important that he have an open channel of communication with his doctor that includes understanding why his treatment regimin is such as it is. From what I have heard about Dr. Lue, I think he would be very responsive to Tyler's concerns. I think Tyler should also read the above mentioned topic and get a better picture of the darker side of PDLabs and TV.
- George
:::DOH:::
I think I just had what my mom calls a senior moment.
PDLabs = Peyronies Disease labs The shortcut types out the full word instead of the two letters.
Any good treatments for brain function? :)
Quote from: hopeful on December 27, 2006, 07:31:29 PM
How is it working??- Please advise
Hopeful
ComeBackid
QuoteI've actually switched over to horny goat weed from viagra due to cost. my insurance won't cover it at all. I'm fighting with them on that, but for now I'm taking 1g Horny Goat Weed 3x daily in place of 25mg viagra 1x daily.
I've only just recently switched over, so I'll report on it later, but there are multiple posts concerning horny goat weed vs viagra. HGW contains icariin which is a cGMP-specific PDE5 inhibitor, which correlates to the why for viagra usage in the PVA (pentox/viagra/l-arginine) treatment regiment. But being as how it's not nearly as strong a cGMP-specific PDE5 inhibitor as viagra, a significantly larger does has to be taken.
For some dry reading:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14996430&dopt=Citation
So I've run out of my L-Arginine capsules and am planning to re-stock. I've had the Arginine E2 Matrix stuff on order for a month and a half and it still hasn't arrived so I'm thinking I might need to bail on that and go with something else. I know George999 mentioned VasoFlow and so I've been looking into that. I'm curious if anyone else is doing that, what dosage people are taking and where the cheapest place is to buy it?
Also, are there any other L-Arginine products that are worthy of consideration?
I too was waiting for a long time on the E2 Matrix product. But when I contacted the manufacturer (SAS), they gave me a date and then didn't (or couldn't) deliver. It was at that point that I went with VasoFlow. I always considered VasoFlow a better progress, but was avoiding it because of the price. But at this point, for me, its been well worth the price. They (SAN) recommend 6 in the morning and another 6 before daily workout = 12 per day, but that is a body builder's regimin and I am not taking it for that purpose. What is working well for me is 2 immediately when I wake up, 2 before midday exercise, and 2 more before bedtime exercise. As for the best place to get it, bodybuilding.com has a very good price (considerably less than MSRP) and very good service. That is where I am getting mine and I am still very happy with it. You get what I consider to be a tremendous punch out of a small amount of arginine and the additives that give it that punch are the very same substances that are anti-fibrotic in terms of Peyronies (ie Arginase inhibitor, PDE5 inhibitor, cGMP upregulator, etc).
- George
George 999, Thanks for the recommendation of www.iherb.com The NOW brand "GAMMA E COMPLEX" is on sale til end of Dec; 120 softgels at $ll.58.
I found an article on Vitamin E today at the LIFE EXTENSION website. It is the most informative that I have ever read on the components of Vitamin E & may be important for anyone with peyronie's. The author is Karin Granstrom Jordan MD. All statements give medical references with abstracts on page 3. I found three especially interesting pieces of information from the report. #1. Vitamin E in food more effective than alpha-tocopherol supplements. #2. High dose alpha-tocopherol decreases absorption of gamma-tocopherol & reduces effects of tocotrienols. #3. Studies of alpha-tocopherol alone without the mix of other tocopherols & tocotrienols has shown PRO-OXIDANT rather than ANTI-OXIDANT activity in people consuming high doses (over 1000mg). If #3 is true, no wonder Vitamin E has had such a bad rap among men with peyronie's. It appears from the article that it's not such a great idea to take vitamin E unless it has the proper ratio of tocopherols & tocotrienols. Did any of our urologists ever tell us this? http://www.lef.org/featured-articles/vitamin_e_01.html
Mark, I would absolutely agree with the info you posted. (In fact the Pauling institute questions whether the typical synthetic E on the market even gets absorbed by the body at all, from the testing they have done, they suspect that most if not all of it gets absorbed by the toilet bowel.) In addition I can tell you that even broad spectrum Vitamin E in high amounts also depletes Vitamin K. Therefore ones Vitamin E 'stack' should include a good quality Vitamin K, preferably in the K2 form. Also even full spectrum Vitamin E in high amounts may oxidate LDL contributing to cardiovascular disease, therefore, a Vitamin E stack should also include 24hr coverage with 8hr time-release Vitamin C which should prevent that from happening. In any case, I would be very cautious not to exceed 2,000IU of Alpha Tocopherol daily as above that level other more perverse side effects begin to set in. I am currently at that level with no problems, but don't plan to exceed it as I deem it too risky. I also suspect that there would not be much to gain by moving the dosage higher.
- George
I saw this on the other peyronie's board (posted in 2003) and thought I'd post it. It's interesting that neither one is stated as effective alone. Probably the people who take pentox are already taking vitamin E but this supports some basis of taking it.:
Randomized, placebo-controlled trial of combined pentoxifylline and tocopherol for regression of superficial radiation-induced fibrosis.
Delanian S, Porcher R, Balla-Mekias S, Lefaix JL.
Service d'Oncologie-Radiotherapie, Hopital Saint Louis 1, Paris, France. sylvie.delanian@sls.ap-hop-paris.fr
PURPOSE: Radiation-induced fibrosis (RIF) is a rare morbid complication of radiotherapy, without an established method of management. RIF treatment with a combination of pentoxifylline (PTX) and alpha-tocopherol (vitamin E; Vit E) was recently prompted by the good results of a clinical trial and an animal study.
The present double-blind, placebo-controlled, monocentric study was designed to assess the efficacy of this combination in treating RIF sequelae.
PATIENTS AND METHODS: Twenty-four eligible women with 29 RIF areas involving the skin and underlying tissues were enrolled from December 1998 to April 2000.
These patients, previously irradiated for breast cancer, were randomly assigned to four balanced treatment groups: (A) 800 mg/d of PTX and 1,000 U/d of Vit E; (B) PTX plus placebo; (C) placebo plus Vit E; and (D) placebo-placebo.
The main end point measure was the relative regression of measurable RIF surface after 6 months of treatment.
Assessment was completed by depth (with ultrasonography) and associated symptom measures. RESULTS: Twenty-two patients with 27 RIF areas were analyzed at 6 months.
Mean RIF surface regression was significant with combined PTX/Vit E versus double placebo (60% +/- 10% v 43% +/- 17%; P =.038). The median slope for the speed of RIF surface area and volume regression was significantly higher for group A than groups B, C, and D. All treatments were well tolerated.
CONCLUSION: Six months' treatment of combined PTX/Vit E can significantly reduce superficial RIF. Synergism between PTX and Vit E is likely, as treatment with each drug alone is ineffective, but these results require confirmation in larger series.
J Clin Oncol. 2003 Jul 1;21(13):2545-50.
Here is a follow-up post on the pentox, vitamin E: http://www-dsv.cea.fr/content/cea_eng/esp_info/recherche/cea_bio/bio33/biopartenaires33.htm
By the way, I was able to get a prescription for pentox by going to one of those walk-in medical clinics. I called on the phone to one of the clinics and asked if the doctor would be willing to prescribe trental for fibrosis- didn't mention peyronie's. She said they would. When I went there, I told her that I was seeing a urologist from a different city and that's what I was dosed on, but the urologist said I could try to get the prescription filled from an internest. So she wrote the prescription after taking a blood sample (didn't think it was necessary but consented anyway) and recommended that I see a urologist. Previous to this, I went to another clinic with the same name, brought in a paper about peyronie's and pentox possibly being beneficial and she said she wouldn't and I would have to see a urologist, so it's probably better to say that you were already taking the medication.
On George's suggestion of the San Vaso Flow, I've been looking into it and it looks like pretty good stuff since it has an esterfied form of arginine (lasts longer in the body), OPC (from grade seed), Cnidium Monnier (hopefully free of heavy metals), and L-norvaline for an arginase inhibitor. The one ingredient I'm not really sure on though is the Ornithine-Alpha Ketoglutarate. I remember George saying that Ornithine was not good back on post #1110 and Tim explained an interesting Ornithine cycle back in post #1108. What's the conclusion, is Ornithine good or bad for our purposes? Or does this different form act in a significantly different way?
Also, the Vaso Flow label doesn't says exactly how much L-norvaline is in the product. Does anyone think it might be a good idea to take some additionally in order to ensure that we're getting enough arginase inhibitor? I found that bulknutrition.com carries L-norvaline.
On an interesting note, the L-Histidine HCL it contains says it is a derivative of histamine. You all probably knew this, but histamine aids erections. That's a new one for me! http://cat.inist.fr/?aModele=afficheN&cpsidt=3388471 But I guess that makes sense considering that OTC anti-histamines can be used to bring down overly long lasting erections. www.sexualhealth.com/article.php?Action=read&article_id=287&channel=1&topic=17
Would one of you kind gentlemen who has done the research and has a clear understanding of this sort of thing care to post a link to a recommended Vitamin E product?
I would very much appreciate the assist.
---PJ
It is interesting to note in the link in post #1342, the picture at the bottom. There are improvements in color of the skin and inflammation, although they don't post pictures of those not taking the medication.
So I've been doing a lot of diet-related research these last couple of days and it got me thinking about the role of diet in Peyronies Disease. It's actually pretty interesting to me that we endlessly debate supplements here and at the same time almost never talk about nutrition (other than Rico's constant admonitions to eat lots of fruits, veggies, whole grains, etc. :)). I'm wondering if this might be a big mistake given that from my research it seems like certain foods can have very strong inflammatory or anti-inflammatory effects.
I'm definitely going to be diving into diet headlong in the next few weeks exploring everything from The Paleo Diet to macrobiotics to superfoods. I'll definitely share with you guys what I find and will be interested to hear your thoughts.
And I hope this is the right forum for this since we don't have an actual nutrition forum. Since the physiological effects of food on the body are very similar to vitamins, herbs, etc., I figured it be the right fit.
Danny, I don't know whether you realize this or not, but you are getting into an area that has been hashed over to the point that it has become ancient history. We ALL agree that it is important to have a healthy diet, get proper exercise, stop smoking, excessive drinking, engaging in prostitution, you name it. It is also very important to take steps to lower stress and improve circulation. HOWEVER, none of these issues have the kind of direct bearing on Peyronies that this forum is geared to. There is an off-topic thread open to posts on general health. That is probably the place where these types of discussions belong. So unless the post has a DIRECT bearing on Peyronies, it really doesn't belong here and Hawk is probably going to move it to the off-topic area.
So if you want to discuss diet in a relevant way, you need to point out a SPECIFIC food or diet plan that is DIRECTLY beneficial to someone with Peyronies and be able to defend that scientific basis for that assertion. Likewise with issues like 'improving circulation'. Peyronies plaques suffer from ischemia, meaning an insufficiency of blood flow. But you can do all kinds of very effective things to improve your GENERAL level of circulation and that is not going to necessarily help your LOCALIZED circulation problem that is aggravating your Peyronies. This is because no matter how much you improve your circulation, and doing so IS a healthy thing, the area affected by your Peyronies is going to remain just as ischemic as before because it is composed of certain biochemical factors that prevent any localized improvement in circulation. Unless you are directly targeting those specific factors, you are fighting the wind. So unless you can point out and successfully defend a DIRECT Peyronies link, your post does not belong here.
I am sorry to have to be so direct on this subject, but some of you out there really don't seem to be getting the connection. There are lots of other fine web sites dedicated to these extraneous topics that do a much finer job at them than the folks trying to hold this website together will ever have the manpower to harness. So only by focusing on issues that directly affect Peyronies can this site hope to continue to be successful. If you have interests in other larger issues, there is nothing wrong with that, and it can have great indirect benefits, but this is not the place for those discussions --- please take them to the off topic area if you must post them here.
Respectfully,
George
With all due respect George I disagree. We're spending a ton of time on here talking about vitamins, supplements, etc. and almost no time talking about diet. In reality the most bio-available nutrients, anti-oxidants, etc. come from the food that we eat. So to say that we can talk about pills ad naseum but that talking about diet is "off-topic" strikes me as very short-sighted. You state that we agree that we should all eat healthy diets but there is a lot of disagreement as to exactly what that means.
Look, I have no interest in debating the "perfect diet" here on this board. What interests me more is discussing the role that diet might play in recovery from Peyronies Disease. I was reading a book entitled The Paleo Diet today and it was talking about the anti-inflammatory effects of Omega-3 fatty acids. Since anti-inflammatory effects are good for Peyronies Disease sufferers (you say so as much here (https://www.peyroniesforum.net/index.php/topic,466.0.html)), I would think this is a very relevant topic.
The bottom line is that we all need to put our bodies in a condition where we can heal ourselves. If we're downing all sorts of supplements and drugs but at the same time eating lot of junk foods, saturated fats, processed crap, etc. we're probably not maximizing that condition. In fact, we're probably making all the money spent on supplements and drugs (not to mention the time spent debating them) largely counter-productive. Just my $0.02.
P.S. Just saw your "Improvement" thread that I linked to above for the first time and was incredibly inspired by it. I'm hunting down Full Spectrum Vitamin E at this very minute. :)
George,
Your post below was excellent and was summarized very well with this paragraph. I added the bold underline.
Quote from: George999 on January 01, 2007, 04:52:00 PM
There are lots of other fine web sites dedicated to these extraneous topics that do a much finer job at them than the folks trying to hold this website together will ever have the manpower to harness. So only by focusing on issues that directly affect Peyronies can this site hope to continue to be successful. If you have interests in other larger issues, there is nothing wrong with that, and it can have great indirect benefits, but this is not the place for those discussions --- please take them to the off topic area if you must post them here.
Respectfully,
George
Anything I would say would only repeat the points that you made. It is not a question of whether these things are good or not. They are unquestionably good for general health, and it can be extrapolated that they would probably be good for Peyronies Disease. However, until some establishes: a direct benefit to Peyronies Disease, expert opinion that it is likely to significantly impact Peyronies Disease, or clinical studies with Peyronies Disease patients, it does not qualify as being "Directly related to Peyronies Disease or the treatment of Peyronies Disease"
I guess I'm missing something here. Just a few days ago George posted a recommendation for Mangosteen juice (#1328) because of its anti-inflammatory effects (which contained no mention of a direct benefit to Peyronies Disease, no expert opinion that it is likely to significantly impact Peyronies Disease and no clinical studies with Peyronies Disease patients). I'm trying to see how that is different from what I posted.
My feeling is that the physiological and pharmicalogical effects of food are not really any different from those of supplements, herbs, etc. So to have different rules for one versus the other seems like a double standard. I personally want to know how everything I'm putting into my body affects me. I don't see why it matters if the Omega-3 comes from fish or from a capsule. And if there are specific foods or diets that can help Peyronies than this seems to be the most logical place to post them.
And no, we're not likely to see clinical studies anytime soon on the anti-inflammatory benefits of salmon for people with Peyronies Disease nor will see an expert opinion that says yoga is great for us. That's because there isn't much money to be made in the medical industry by pushing fish or workout routines. But I feel pretty strongly that if these things have been proven to have similar effects (e.g., decrease inflammation, increase circulation, etc.) to other things that have been proven to help Peyronies Disease then they are worth investigating.
Danny, I was not suggesting that you should not make posts regarding food. If you are aware of particular foods that are particularly anti-inflammatory, anti-oxidant, anti-PDE-5, anti-Arginase, anti-TGF-beta-1, etc., please post away. But I did intend to take a swift shot across the bow in terms of where I expected this topic might be headed. My point was that whatever you are discussing from food to Yoga, you need to point out clearly how it DIRECTLY impacts Peyronies. You might also want to mention SPECIFIC foods or issues that have a DIRECTLY negative impact on Peyronies. What I did want to head off is what has happened multiple times in the past where we quickly move from Peyronies issues to very generalized health and nutrition issues. So my response was not intended as an attack on your post, but rather a reminder to keep the focus on Peyronies issues. If I didn't communicate this intention well, my sincerest apologies. - George
I personally have mixed feelings about relegating the discussions regarding diet to "Off-topic", as opposed to, say, "alternative" therapies. The main reason is that the Off-topic area is geographically located further (farther?) down the page and out of sight, out of mind.
That said, one could argue that both mangosteen juice and a discussion of diets are "off-topic" as neither are shown to be of value in treating Peyronies Disease.
Where we let others down in this area, though, is in hiding discussions that might lead to improved health, and hence to reducing severity and/or risk of worsening Peyronies Disease (or certainly reducing the risks of getting Peyronies Disease). Thus, avoiding diabetes can significantly reduce the risk of getting Peyronies Disease - and diet has a HUGE impact in this realm. Anti-inflammatory therapy is almost certainly better is taken as food instead of supplements - just look at the difference in heart protection from Omega-3 supplementation versus eating fish and flax seed in the diet (the latter is far better for you).
So diet is hugely important in overall health and has a direct bearing on how one heals from Peyronies Disease, IMHO. However, getting better may require a knife and/or presecription medications also.
One other point - George has gotten better, and so I tend to lsten to what he says about self-treatment, as I tend to pay attention to "Old Man" about how to use a VED. I would argue that if there is one case report about diet fixing Peyronies Disease, we should be willing to discuss it here. I think that the sub-topic headings are good enough to help folks decide what to read more closely.
Tim
So I'm trying to make the decision between these two. Vasoflow sounds good but of price we're looking at about $0.90 a day (assuming 6 capsules a day). The L-Arginine I've been taking is only around $0.30 a day for the same 3g/day. I'm trying to decide if the price difference is worth it. I'm already on Pentox and Viagra which is about $2/day right there so I guess an extra $0.60/day isn't the worst thing in the world but at the same time if I'm paying triple for something I want to know that its worth it.
Any thoughts?
Tim, I agree with you that diet should not be a forbidden subject in and of itself. My concern was that we were at risk of drifting into a generalized discussion of healthy diet, rather than touching on diet and certain dietary items as they DIRECTLY relate to Peyronies. I think it is extremely important to maintain that focus and always try to center back on it because it is so easy to drift off into areas that have no real connection with Peyronies. As Danny points out, I myself have MENTIONED diet and exercise, but I have tried very hard NOT to make them the main topic of this discussion. As for anti-inflammatories, I certainly prefer Mangosteen over NSAIDs. I have found it to be extremely effective without any of the nasty side effects of most NSAIDs.
Danny, a few posts down you assert that healthy diet is 'better' than 'pills'. In general, I would agree with that statement. But there are times when one has to resort to pills. In cases where large quantities of a particular beneficial substance are needed, you certainly would not want to consume the amounts of food necessary to achieve those targets. In fact you mentioned specifically Omega-3s. You would have to eat a very fish heavy diet to get therapeutically beneficial amounts of Omega-3s. Such a diet would load you down with intolerable amounts of heavy metal contaminants. Fish oil supplements, on the other hand, are concentrated and processed in such a way that heavy metals and other contaminants are safely removed. In the case of VasoFlow, I am using it instead of L-Arginine because other forms of L-Arginine simply didn't work for me. That is probably because with my advanced hypertension, I am Arginine resistant in terms of BP. But I have to wonder if my Peyronies is also 'Arginine resistant' and I suspect that the VasoFlow formula is as much more effective on my Peyronies issue as it is on my BP issue. Remember, VasoFlow isn't just another Arginine alternative, rather it is an engineered formula designed to overcome Arginine resistance by attacking Arginase and promoting cGMP. It is also designed to allow far more Arginine to be assimilated AND it is designed to be sustained release so all that Arginine doesn't just explode through your body and then disappear 90 minutes after you take it. And if whatever you are taking simply ends up coming out in the toilet bowel (either unabsorbed or as overflow), that is not a bargain either. Having said that, I would suggest that you try it both ways and see what seems to work best for you.
- George
I've been doing a lot of reading on pentox- it looks promising, seems safe, and doesn't have many side effects at all. I've been on it now just about a month. The one thing I can't seem to find is an explanation of why one has to take pentox for so long( a year or longer) for it to be effective. I don't recall us discussing this, if so someone please enlighten me.
ComeBackid
On post 1341 and 1342, with pentox at 800 mg/day combined with vitamin E at 1000 IU a day, the fibrosis was significantly reduced at 6 months. It also states that on the combined medication the rate at which the fibrosis retreated was significantly greater. Peyronie's is a type of fibrosis, so the plaques and disease may retreat faster when using this.
ComeBackid- Here is another link: http://www.jco.org/cgi/content/abstract/23/34/8570
This may or may not have a correlation with peyronie's but for this group of radiation induced fibrosis, those treated for only 6 months to a year had a 40% increase in the fibrosis when stopping the medication (fibrosis measured at the end of treatment) and 8.4% increase in fibrosis upon stopping for those treated 2 years to 4 years, so this may require longer treatment. However, they say that for more severe radiation induced fibrosis, you need the longer treatment. Again, radiation fibrosis may be more severe than peyronie's so treatment of that length may not be necessary.
Here's a great article on Ginkgo Biloba Extract.
http://www.chinaphar.com/1671-4083/27/1222.htm
Some quotes from it:
- High glucose is presumed an initiating agent and increased transforming growth factor-b1 (TGF-b1)
- These results suggested that EGb could decrease the expressions of collagen IV and laminin in mesangial cells and captopril's capability of decreasing expressions of collagen IV and laminin was between that of EGb's moderate and high dose (P>0.05)...The results suggested that the high dose of EGb had a similar capability to captopril of decreasing the expression of TGF-b1 mRNA
- Various antioxidants inhibit mesangial cell activation by high glucose and ameliorate features of DN. It has been reported that the glucose-induced collagen IV expression can be partially reversed by the addition of two structurally unrelated antioxidants, trolox and a-lipoic acid, in porcine mesangial cells[3]. So antioxidant treatment is a potential antifibrotic therapy
- In conclusion, EGb can regulate the mesangial cell cycle, ameliorate oxidative stress state, suppress the accumulation of collagen IV and laminin, decrease TGF-b1 and Smad2/3, and increase Smad7 expressions in cultured cells.
What I take from this quick read is:
- For our supplements to work, for example Ginkgo as a reducer of TGF-b1, one must have a low-sugar, healthful diet (I know everyone says a 'healthful diet is important', but I find this interesting b/c it's direct evidence as to exactly how it can affect the efficacy and goal of our supplement regimens)
- Antioxidants are useful for even more than controlling free radicals and could potentially be useful in and of themselves for fighting fibrosis. (this supports what others here have found)
ComeBackid, Think of it this way. The pentox allows healing to gradually take place by promoting good stuff. The bad stuff has to gradually get cleared up.
For remodeling to occur, one simply has to promote "normal" (in the case, turn off TGF and other inflammatory pathways). Then the usual process of scar being replaced by more normal tissue can occur. Remember that not a single cell in your body is immortal - all of them are replaced by similar cells, using a cell-cell interaction and language that regulates what the replacement cell will look like (cancer is unregulated growth of a single cell line). Thus, even a hard bone is actually made up of cells that are in a constant state of turnover; that is why a bone can remodel itself and a jagged fracture line can "smooth out" over time.
Pentox promotes the normal pathways of wound healing - I do not think it "dissolves: scar or anything like that. Therefore, the dissolvement of the old scar (to be replaced now by healthy cells) therefore takes a normally longer amount of time. This is quite different than something like surgery where scar is removed suddenly, or enzyme therapy where it is "dissolved" more rapidly.
The shorter answer is that we plan to take it for 2 years because that is how long it takes.
Tim
ComeBackid, just to add to Tim's comment. Researchers were able to 'cure' Peyronies in rodents in a much shorter time frame than is possible with humans. The reason is that they used massive quantities of Pentox. This was possible because in the case of the rodents, they were 'sacrificed' at the end of the study in order to evaluate the results of the treatment, and so any future impact of such massive medication on the health of the rodents was not an issue. Since in the case of humans there is no expectation that we are going to be 'sacrificed (euthanized)' at the end of six months, there is concern about potential long term adverse effects of unnecessarily high doses. After all, Pentox is modifying a biological process that is there for a reason and normally serves a beneficial purpose. If you push that process around too hard you are going to get nasty short term side effects and possible long term physiological damage. That is why the plan is to GENTLY restore you to normality.
Thompson, Your post is extremely interesting to me since it implicates elevated serum glucose levels as an up regulator of TGF-beta-1 and thus a possible instigator of Peyronies. Then connect this with the fact that regulators in Europe are currently worried that beta blockers are causing diabetes AND quite a few of us have contracted Peyronies while on beta blockers. That is really fascinating along with the ability of Ginkgo to apparently counteract this process.
- George
I am thinking that the link between serum glucose and TGF-beta-1 should be ringing some alarm bells in connection with Peyronies. It would seem to indicate that we ALL should be concerned about getting our blood sugar levels down if they are elevated.
- George
This same theme seems to reoccur every place you look. I just refreshed my memory from a book my wife has by a dermatologist. He says foods high on the glycemic index (refined carbs, banannas etc) activate inflammatory responses that result in many poor health conditions including, aging of the skin form cross linking of collagen fibers. The result is a loss of elasticity of the collagen. He recommends antioxidants and complex carbs in the form of 5 or 6 light meals or snack per day. He also recommends that when eating items with higher sugar content like bananas, that their impact should be buffered by first ingesting a bit of good fat (omega 3,) and protein.
Don't forget that diabetes and hypetension are highly prevalent in Peyronie's Disease patients. That does not prove causation, but it is prtetty darn important to consider before scarfing down another donut.
Tim
http://www.urotoday.com/287/conference_reports/highlights/diabetes_and_hypertension_are_highly_prevalent_in_peyronies_disease.html
Down in the link in 1358, it mentions Pentox and Vitamin E are antioxidants. The fact that there is a rebound effect of 40% growth upon ceasing medication if stopped too soon means that healing with medication is different than natural healing. Natural healing in my mind would be a gradual decrease in the fibrosis, with no big spikes. So, it is necessary if you go the medication route to at least stick with it for awhile. In mentioning radiation fibrosis, they say that those patients who had their radiation done less than 6 years saw the faster decrease in fibrosis while on medication.
Hawk, You might want to recheck on the glycemic index of bananas:
http://www.carbs-information.com/glycemic-index-fruit/banana-gi-value.htm (http://www.carbs-information.com/glycemic-index-fruit/banana-gi-value.htm)
- George
PS - In fact that website has a convenient GI tool: http://www.carbs-information.com/glycemic-index.htm#gi (http://www.carbs-information.com/glycemic-index.htm#gi)
Quote from: tdsc on January 04, 2007, 03:30:50 PM
Down in the link in 1358, it mentions Pentox and Vitamin E are antioxidants. The fact that there is a rebound effect of 40% growth upon ceasing medication if stopped too soon means that healing with medication is different than natural healing. Natural healing in my mind would be a gradual decrease in the fibrosis, with no big spikes. So, it is necessary if you go the medication route to at least stick with it for awhile. In mentioning radiation fibrosis, they say that those patients who had their radiation done less than 6 years saw the faster decrease in fibrosis while on medication.
And the really bad news is that natural products can have the same effect. The problem is not so much related to anti-oxidants since they operate mainly be 'soaking up' free radicals. The problem is related to ANY substance, natural or pharmaceutical, that suppresses or up regulates certain biological factors like, for example, TGF-beta-1. If you have elevated TGF-beta-1 and you are suppressing it, you are only aggravating the factors that are causing the elevated TGF-beta-1 in the first place. Thus if you quit the substance ESPECIALLY in a 'cold turkey' fashion, your TGF-beta-1 levels will shoot skyward until the body can readjust. The same phenomenon happens with everything from prednisone to blood pressure medications and in some cases the effects can be deadly. So let me reassert. Herbs and supplements are NOT exempt from this phenomenon, so don't think that going the 'natural' route ensures safety. Many natural remedies can have rebound effects just like drugs. - George
Here is a link that says superoxide dismutase (an antioxidant) may be effective in fibrosis: http://www.forourpatients.info/pdf/3-1/FOPE186-B22.pdf
Here is another link that says what superoxide dismutase is: http://en.wikipedia.org/wiki/Superoxide_dismutase
It says superoxide dismutase is an antioxidant defense in nearly all cells exposed to oxygen. I assume that if one is taking pentox and vitamin e, there is increased oxygen in the cells, and thus increased superoxide, a pro-oxidant. Superoxide dismutase breaks up the superoxide.
tdsc,
Somehow you crossed up your first link. It is about pentox and vit. E, not superoxide dismutase. Is there another article on that site perhaps? crs
Quote from: George999 on January 04, 2007, 03:32:29 PM
Hawk, You might want to recheck on the glycemic index of bananas:
Interesting George! He clearly lists bananas under "bad carbohydrates (those high on the glycemic index)" They are on the list with potatoes, white rice, sugar, carrots corn, fruit juices, etc.
Guys, A reminder to edit your subject lines when you pos. Click on this quote link
Quote from: Hawk on November 22, 2005, 10:48:41 AM
Thanks
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=3068519&dopt=Abstract (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=3068519&dopt=Abstract)
George,
I'm really tired and slow tonight. Did that article in PubMed mean that topical application of SOD will help Peyronies Disease or not. Because if that's true, it sure is a lot cheaper than Verapamil. Thanks, crs
Here is a link to a spray that does not contain retinol-A, just SOD and ethyl alcohol:
http://www.youngagainproducts.com/OurProducts/tabid/4206/CategoryID/4/List/1/catpageindex/5/Level/1/ProductID/60/Default.aspx?SortField=ProductName%2cProductName
Under JD's link under the "developmental treatments" header on the main page, there is some promise for benefit. I've emailed the company asking what form of Superoxide Dismutase they use.
Update: This product is not liposomal SOD. If you look above you will see why you want liposomal, and possibly how to get it.
It's actually JW not JD who posted it. I'll repost what he said:
One drug that seems quite promising from the literature is Liposomal recombinant human superoxide dismutase (lrhSOD). There's an article describing the results from testing (double-blind,placebo controlled), the abstract can be found at:
http://cat.inist.fr/?aModele=afficheN&cpsidt=17107779
I actually emailed the company, Polymun Scientific (http://www.polymun.com/), in Vienna, Austria, about this drug which they call Lipoxysan. They said they're a small biotech company and they have not been able to find anyone to commercialize it.
Anyone out there have any connections with the major pharmaceuticals? Given their results, it seems like a no-brainer that this could help a large number of people out there. Do the pharmaceuticals not want to license it because there might be something better coming down the pike? Are the profits just not there?
Here's the abstract of their study:
Résumé / Abstract
Objective: To demonstrate the efficacy and safety of a topical gel containing liposomally encapsulated recombinant human Superoxide Dismutase (lrhSOD) in the treatment of painful Peyronie's Disease. The theoretical background is that lrhSOD, by scavenging of free oxygen radicals, might interrupt inflammatory cascades and thereby limit further disease progression. Methods: In a placebo-controlled randomized clinical trial, 39 patients with Peyronie's Disease and significant pain symptoms were treated with lrhSOD or placebo for a 4 week period. At this time, statistical evaluation of pain resolution was performed as primary study endpoint. Patients then were continued in a cross-over study design to ensure a total of 8 weeks of lrhSOD therapy for all study participants. Pain, plaque and curvature assessment was performed at study entry and every 4 weeks until week 12. Results: LrhSOD treatment resulted in a statistically significant reduction of pain (p = 0.017) compared to placebo already after 4 weeks. At week 12 pain was significantly reduced in 89% of patients who all had received 8 weeks of lrhSOD therapy at that time. Response to other disease parameters was assessed at week 12: plaque size was reduced in 47% of patients, as was plaque consistence in 38%. Penile curvature was improved at 5-30 degrees in 23% of patients. The expected spontaneous disease progression rate of up to 40%, as reported by several investigators, was significantly reduced to < 10% under lrhSOD therapy, and patients satisfaction was high, also consequent to the lack of therapy-related side effects observed in the present study. Conclusion: LrhSOD is an easily administrable, safe and effective local therapeutic for the painful phase of Peyronie's Disease.
Revue / Journal Title
European urology (Eur. urol.) ISSN 0302-2838 CODEN EUURAV
Here is a link: http://www.hairsite4.com/dc/dcboard.php?az=show_mesg&forum=8&topic_id=36809&mesg_id=36842&page=
And another: http://www.lipoxidil.com/
The first link mentions that the company in the second link makes a liposomal form of SOD. They mention stability of SOD in the spray, that it may only be stable for a month. The company in the second link, if you scroll down to "various regrowth agents" mentions SOD- "coming soon"---- a liposomal SOD.
By the way, I've researched an impotence board and there is a discussion among many members, and several of them use an online indian viagra supplier:
www.alldaychemist.com Many of them use the "manly" version, which is less potent, and penegra they say has potency similar to viagra. These are sildenafil citrate products. Thought I'd mention it for people who find viagra to be too expensive. One thing they mention on the site is that some people don't get their orders past customs, but others have had no problems, depending on where in the u.s. you are.
Here is another link about SOD, a patent-
http://www.freepatentsonline.com/6312720.html
On the website, www.lipoxidil.com, they say they take custom orders. I know from reading the link below that they used to sell a liposomal SOD, and they have SOD on their webpage, but no product yet. The patent above describes the quantity of liposomal SOD in a peyronie's treatment.
Perhaps somebody could call them or get a group of people to purchase a custom order of liposomal SOD. In fact, it implies that all of their orders are custom orders, even though they have product existing for sale. This would be a good adjunct therapy for Peyronie's. The difference between liposomal SOD and like the product aways down with the spray on SOD but not liposomal, is that the liposomal SOD penetrates deeper. The patent above states that there is a danger that SOD would be consumed in the upper layers of skin because SOD by itself is very reactive, whereas the liposomal SOD would be more stable and penetrate deeper.
Also, the seller at lipoxidil fulfills orders in Europe so that medications like this would not be subject to normal pharmaceutical regulations. God forbid that Will from Talon Pharmaceuticals gets involved in this lol.
Here is another link showing dosage of SOD: http://www.jcmm.ro/download/jcmm008.001.11.pdf
One thing that we have to look at it the stability of the SOD. It may degenerate as shown in the immediately preceding link, depending on the preparation. I think I also read that you would need to keep it refrigerated. So if the stuff degenerates, it's not going to be effective.
Quote from: tdsc on January 04, 2007, 09:42:51 PM
Apologies, the second link is http://www.lipoxidil.com/
That's where a liposomal form of SOD is coming soon.
TDSC, can you just modify your second link on your post and then you can delete the "correction post" It will keep the topic a bit less cluttered.
Thanks
Alright, you've got to see this post about this woman on Pentox and Vitamin E, she had an 8 cm by 11 cm fibrosis that regressed to nothing over 18 months:
http://bjr.birjournals.org/cgi/reprint/71/848/892.pdf
It also mentions first seeing a clinical regression medically of fibrosis with Cu/Zn superoxide dismutase. The decision to use Pentox/Vitamin E, the authors state, is that liposomal SOD was not available medically.
i`ve got a doctors appointment next week and i`m going to enquire about this pav cocktail,i shall let you know how i get on,i`m not sure if my doctor can prescribe these or my urologist,but having decided to actively do something about my condition,i`m going to try,i dont even know if the p and a parts of the cocktail are available in britain,but i`m sure they will be,it may be a few months before i see a urologist,such is the british nhs,i`ve tried gingko before,but that was an experiment,in britain you can buy this stuff without a prescription,in shops that sell sexual paraphernalia,its called "the blue pill" and is sold to supply the viagra demand,it has no effect like viagra,i took it for 2 wks out of curiosity and noticed no affects in particular(if i grow extra toes or breasts i`ll let you know!) i`ll be trying vit e as well,i can get this in health food shops,someone posted a link for an "online" pharmacy,indian viagra,i`ve heard a few cautionary tales about these regarding counterfeit drugs which could contain anything from silica and maize to actively nasty things like ground glass,personally i would be too wary of buying online as i wouldnt disclose my bank/credit card details online,here i have to buy ed drugs on the black market,bodybuilder types who use steroids and such nonsense are a good source of supply,but the most consistent is the homosexual community,whilst i`m not remotely homophobic,this can be a bit embarassing,you ask them about them and they go "ooh,hello sailor" and i`m like "uh oh",they cost £20 for 4 and you cant guarantee dosage ie 25mg or 100 mg,in non peyronies cases docs will only prescribe 4 a month,as britain to an extent is a traditionally sexually repressed country,believe it or not you guys in the us are more open about the whole sexual spectrum in general,you lot are way ahead of the game in terms of knowledge of treatments and surgery etc, it will be a releif to get a legit prescription,as trying to street source ed drugs is a bit hazardous for various reasons,one of my girlfriends friend is at uni studing medicine,in year 4 of a 7 yr course,and she can prescribe i`ve always refused her offers in case i get her into any sort of trouble,but i will talk to her and pick her brains
the various mentions of antioxidants have got me thinking,i have all my life been a great drinker of cups of tea which is naturally abundant in antioxidants,i rarely drink alchohol,but i can drink up to 15 cups of tea a day,i drink the decaffeinated brands, i love the stuff always have,ever since a young child,i wonder if this could explain the fact my peyronies is pain free and the curvature has never worsened,with a very slight improvement since the time it first happened,i used to think free radicals were guys with long hair and beards who carried placards saying "down with govt"!
i got this info from a site about antioxidants Few people would argue the fact that tea is good for you, and green tea is the best form of it for your health. One of the components of tea that make it so healthy, are the antioxidants.
Alright, so tea is packed with antioxidants. What exactly are they, and what have they done for me lately?
Oxidation is a normal process that takes place in the body. It causes damage to our cells, and it's believed that this cumulative damage is what causes aging and eventually death. It happens as a result of regular metabolism, but is accelerated by pollution, excessive exposure to sunlight, alcohol and smoking.
A free radical is a charged atom or a piece of a molecule. In order to re-establish its own stability, a free radical looks to steal an electron from its surroundings. This usually means from one of your own healthy cells. You end up with a little bit of DNA damage, or a protein becomes dysfunctional. It may not seem like much, but all these little damages add up. Antioxidants are chemicals that generously offer up their own electrons to the free radicals, thus sparing you the cellular damage.
Every time they neutralize a free radical, the antioxidant loses an electron and stops being able to function as an antioxidant. This is why you must continually resupply your body with the vitamins and other chemicals that act as antioxidants.
There are many chemicals that perform as antioxidants, such as vitamins C and E, beta-carotine, and selenium. You can get these from all kinds of nuts, fruits, vegetables and meats. The specific kind of antioxidants found in tea are called phenols, and they can also be found in a variety of berries and grapes.
I too would be wary of buying 'Viagra' without a prescription over the Internet. Remember, these people are engaging in illegal activity by selling this stuff to you. That tells you something about their integrity (or lack of). Who knows what else they might be capable of. And if they poison you, you are going to obtain justice? Yeah right. Not me, no way. I prefer to take my chances with things like Horny Goat Weed from a company based right here in my own back yard. At least if they poison me, I would have potential recourse.
- George
smokers were mistakenly prescribed anti-impotence drug Viagra by doctors.
NHS Greater Glasgow and Clyde said the error was due to a computer glitch at two city GP practices.
When GPs selected anti-smoking pill Zyban, computers selected sildenafil, the generic name for Viagra.
A health board spokeswoman said: "At no time was patient care affected by this as all prescriptions are subject to stringent double checking."
The e-Formulary computer system used by GPs automatically selects a list of the most popular drugs when doctors fill out prescriptions.
Some patients went to the pharmacy with a prescription for the anti-impotence drug instead of tablets to help them stop smoking.
The health board was made aware of the problem on Tuesday and alerted all its GPs to the problem.
It is not thought anyone left a chemist with the wrong medication.
A health board spokeswoman said: "A computer glitch was discovered by two Glasgow GP practices that use the Glasgow e-Formulary, following a recent update of the online GPass system used throughout Scotland.
"As a precaution an advisory e-mail and memo was issued to all practices which use GPass and have installed the e-Formulary to alert staff."
got the story below from a news site,hence why guys like me and bassman in the uk have little faith in our nhs system,i bet there was some baffled glaswegians that day!
Yeah be careful guys, I spent nearly 300 dollars on my generic viagra and still have not really tried it more than a couple of times out of fear that it could be dangerous. There was just a report last night on nbc nightly news on phony weight loss pills that the FDA discovered. There is a lot of junk out there, use some common sense when shopping. I'm getting my generic viagra taken to a lab to get tested I think, want to see if they are blowing smoke up my ass or not. George makes a good point, when people do criminal acts overseas or offshore from the United States there is little that can be done to prosecute the bastards, kind of like with the offshore gambling sites that americans can use. People are protected in other countries, and thats if they can even be found or tracked down... ha.
Hello gents
I am in need of some assistance please. I am battling to get docters to diagnose my condition.. i.e. hardening, shortening of penis as it is very unusaul. Docs do not seem to think it is pyronies. I would really like some assistance and guidance in getting this diagnosed + getting on the pentox medication ASAP. I would like some suggestions please on what you think is best i.e. info, documentation to take to doc to get him to perscribe the pentox treatment. Has anyone here had success in getting a doc who has not heard of the pentox treatment to perscribe it???As i am young and had unusaul injury docs cannot see how it is pyronies. I have left it for a while now in hope it is temporary and will improve on its own + not much success at all.
Your help would be A HUUUUUGGGGEEEEE help to me and possibly a life saver!! Please could someone respond ASAP
Thank you very much
hello gibson,if by docs you mean a medical practitioner,i would asked to be referred to a urologist,or seek out other doctors,medical practitioners etc which is your right to do,this peyronies lark is definitely an uphill struggle,but hopefully we`ll all get there in the end
I have been to 2urologists so far...2 of the top in the UK to be exact. Both said no its not pyronies...the first doc though gave me CIALIS so I was on that when i went to second urologist and the CIALIS softens my penis so it was not in its bad state when i went for second referal. It has developed since then but hoping its healing. But I wish to get on pentox ASAP to help. Im not in the UK currently buy have found a nice GP here with some urology experience and he takes time to listen to me...so Im hoping to get him behind me now with this pentox thing...just need to give him some info on it
Gibson, If you go back over this thread carefully, you will find links to Pentox info and Pentox studies. Be sure to inform your doctor that Pentox is actually the generic form of Trental since some doctors KNOW Trental, but they will give you a blank stare when you mention Pentox. Tim also has some very good papers on Pentox and you might be able to get him to email them to you if you ask email him with your email address and ask him for them. In addition to Peyronies, there are a number of other fibrotic diseases where Pentox has demonstrated effectiveness in research projects. The information is out there on the web. So I also suggest you go to Google and search for "Pentox site:.gov" and Pentox site:edu". You might do the same substituting Trental for Pentox and see what you come up with. You might also narrow that by adding "peyronies" to the search string. The more personal research you do, the more clues you will find and your doctor does not have the time to do this sleuthing. Anytime you find something interesting, print it out, and then take the best of the evidence to discuss with your doc.
- George
Thx George
Already have pulled off quite a bit of information. Keep reading about this study by Dr.Lue and pentox though that I cannot seem to find on the net! Can someone here maybe forward me the link or post it here?? Would be a great help
Thanks all
Anybody tried copper peptides, like super cp serum from the PDI website, with success?
I also read that if you consume large amounts of Vitamin C, you could get a copper defeciency.
Hi Gibson,
It sounds like a sort of diffuse fibrosis that you are having, which can occur after, say, a period of priapism. In fact, it is a well described potential outcome of prolonged erections lasting greater than four hours.
The first review of Pentix I read was on two patients treated with Viagra, Pentox and (I think) arginine after having priapism episodes, given prophylactically to prevent penile fibrosis. I don't know if that is close to the injury that you suffered, but it can be a sort of unregulated overblown inflammatory response to a minor injury too (IMO). Priapism is nowhere near a "minor" injury though.
Persist mightily in getting their attention. DEMAND they take your problem seriously. One way to gracefully do that is to first say, "I need to tell you a couple of things, and I am requesting your very close attention to what I want to say. It is difficult for me to talk freely at the doctor, so please be aware that I may stumble or stammer, but that I feel this is important, and I have not been heard yet" Then say that you are concerned that a diffuse process of fibrosis is happening to your penis, and you need something to be done about it. Describe your injury, and ask what tests might help them understand what is actually happening. Hopefully that will lead to a color duplex ultrasound study done during an induced erection. Asking them to gather data will help them to understand that you are willing to see if it is psychological (many docs assume any erectile difficulties are emotional and do not think any further), and hopefully stimulate the desire to figure out the puzzle.
Finally, find a doc who is willing to engage in the process of solving puzzles. He or she has to be willing to CARE about what is causing your problem, and find it interesting enough to try to solve it. Even if what you determine is that your erectile function is gone forever (IOW, one of the worst things that could happen), wouldn't you rather KNOW, than to wonder? I doubt that will be the outcome, though.
Good luck.
Tim
ps also, tell them that the idea for an induced erection and the color duplex ultrasound came from a doctor friend of yours - that may (unfortunately) get their attention more than saying you read about it on the net.
Thx Tim
I have been for a dopler ultrasound already. The injection had no effect on me and caused a hell of a lot of pain. They said though all they could see was a slight thickiening on the left side and that my blood flow was a bit slower than usual which confused doc. Would they have been able to pick up the problem on the flaccid penis?? Im am worried that because It was not done on the erect penis that they did not pick up the problem. I am going to Doc again soon and cannot leave there until he has decided to work with me.
Thank you
Hey all. Had an appt. w/Dr. Rajfer @ UCLA today. It's been six months or so since I started the Viagra/Pentox/Arginine trifecta. I haven't noticed any improvement, perhaps a slight worsening although it's tough to tell. Certainly no significant worsening. Anyway, the Doc said today that his advice would be to stop the meds ("any healing that is going to occur has already occurred"). I'm actually OK with this as I've been trending towards a more "natural" lifestyle lately and the thought on being on medications long-term (especially Viagra) isn't very appealing. So here are my thoughts:
1. Drop pentox and replace it with gingko
2. Drop viagra and replace it with horny goat weed
3. Continue taking L-arginine
In addition, I'm going to spend a ton of time looking at medicinal properties of foods and other supplements. Lately I've been looking a lot into anti-inflammatory stuff and will continue to do that. I have a gut feel that the Peyronies Disease was initially caused by a level of unhealthiness (both physical and mental due to anxiety). So I'm using this as a wake-up call to do everything I can to become more physically and mentally healthy.
I'm also going to look closely at George999's routine (posted in the Improvement forum) as it's a case of someone not on any prescription drugs nor using the VED (I think) who has seen signfiicant progress. So I'm planning to pattern my routine more after that and will likely add some more supplements to my regimen (which I can also do financially now that the $4/day pentox/viagra tax is gone :)).
Would love to hear any thoughts on this. Certainly part of all of this stems with a general frustration as of late with Western medicine (won't get into that any further here...) but I do think it's a sensible plan and one that could likely lead to significant healing in the future.
Here is the case study article. Note the time (2 years). Re-eval was 6 mo.
I as always am skeptical of diagnoses. These are respected doctors and should havethe diagnosis right, though.
I don't believe in spontaneous recovery for correctly diagnosed. cases of Peyronies Disease. Something had to facilitate, if not cause, the improvement.
Lord only knows. And he ain't tellin'.
QuoteOral Pentoxifylline May Have Efficacy In The Treatment Of Peyronie?s Disease
Written by Michael J. Metro, MD
Thursday, 23 February 2006
BERKELEY, CA (UroToday.com) - Peyronie's disease is characterized by the development of fibrotic plaques within the tunica albuginea. BERKELEY, CA (UroToday.com) - Peyronie's disease is characterized by the development of fibrotic plaques within the tunica albuginea. The prevalence of the condition has been estimated to be between 3% and 9%. The natural history of Peyronie's disease is controversial with some studies suggesting that 50% of patients showing some degree of resolution or improvement while others claim that only 13% of patients report improvement. The etiology of the condition is equally controversial. The most widely accepted theory is that an injury to the penis, causing a buckling or tearing of the tunica albuginea, results in the disruption of blood vessels, leading to an inflammatory response with subsequent remodeling of the connective tissue into fibrosis.
The great number and variety of purported treatments for Peyronie's disease is in proportion to the difficulty of its management. A recent case report by W. O. Brant and Tom Lue from the University of California, San Francisco, examines the use of a novel oral agent, pentoxifylline, for the treatment of the pain and curvature associated with Peyronie's disease. The report is published in the February 2006 issue of Nature Clinical Practice Urology.
Pentoxifylline, or Trental, has been used in humans (in divided doses of 800-1600 mg per day) in a variety of inflammatory and fibrotic conditions, including radiation fibrosis, radiation proctitis, cystic fibrosis, radiation pneumonitis and steatohepatitis. The mechanism is not fully understood; pentoxifylline blocks the transforming growth factor (TGF) B1- mediated pathway of inflammation, prevents deposition of collagen type 1, and acts as a nonspecific phosphodiesterase (PDE) inhibitor.
In the case report, a 51-year-old male presented with the chief complaint of a penile mass, which had been present for 8 months. The mass appeared rapidly over a 3 month period and then stabilized. The patient denied pain but had a 30 degree dorsolateral curvature which inhibited sexual intercourse. The patient also had an hourglass deformity of his penis on exam. Erections were less firm than previously but did respond to sildenafil. Ultrasonography was performed, revealing two calcified areas in the tunica albuginea of the left corpus cavernosum, one dorsal and one ventral. The patient was prescribed pentoxifylline 400 mg three times a day and took the medication for 6 months. Upon re-evaluation at 6 months, his penis had straightened to 10 degrees of curvature, but still demonstrated an hourglass deformity. After two years of pentoxifylline therapy, improved erectile function was reported without the use of erectogenic agents. Ultrasonography and physical exam showed resolution of the dorsal plaque although the ventral plaque was still present.
The authors, encouraged by pentoxifylline's observed suppression of collagen production in Peyronie's cells in tissue culture, as well as its efficacy in other fibrotic disorders, have been offering patients' treatment with pentoxifylline for Peyronie's disease since 2002. A series of 16 patients with extended follow-up will soon be part of a new report to further describe the efficacy of this drug in the treatment of Peyronie's disease.
Nat Clin Pract Urol. 2006 Feb; 3(2):111-115
Source: http://www.urotoday.com/42/browse_categories/erectile_dysfunction/oral_pentoxifylline_may_have_efficacy_in_the_treatment_of_peyronies_disease.html
DannyOcean:
I think the arginine and ginkgo is a good idea, along with maybe a full spectrum e and opc's and a good diet along with VED......
I agree with your doctor also..... it seems they give the pentox in the first months, maybe to curtail any further progress of the scarring.... I been on it for two months, no help, went backwards..... what I don't like about the pentox other than side effects is that I can't use the VED with it, so I will probally discontinue it also soon.... esspecially now that no one seems to have had any success with it...
I don't think you would get anything from horny goat weed, better off with the arginine for that...
Rico
Thanks Rico. I need to give the VED some thought. Dr. Rajfer didn't write me a scrip for it but I didn't get the sense that he wouldn't. He basically said that it wouldn't help me although it was stretch the penis (which would seem like it would help but oh well...).
In terms of HGW, my take from reading the forums here was that it was a PDE-5 inhibitor that worked in a similar way to Viagra. I could be wrong about that... Also, from my other reading it suggests that HGW could play a role in elevating testosterone. I think I might be suffering from low levels of test (something I'm going to get checked soon). If that's the case then I might get two benefits from HGW.
Also, in addition to looking into anti-inflammatory foods, I'm also going to look into things that improve circulatory conditions. Massage is one non-drug way to improve circ. I'm sure there are others. As always, I'll share findings with the group.
Quote from: Rico on January 12, 2007, 03:17:02 PM
DannyOcean:
I think the arginine and ginkgo is a good idea, along with maybe a full spectrum e and opc's and a good diet along with VED......
I agree with your doctor also..... it seems they give the pentox in the first months, maybe to curtail any further progress of the scarring.... I been on it for two months, no help, went backwards..... what I don't like about the pentox other than side effects is that I can't use the VED with it, so I will probally discontinue it also soon.... esspecially now that no one seems to have had any success with it...
I don't think you would get anything from horny goat weed, better off with the arginine for that...
Rico
Rico,
You may well want to stop Pentox because it is not working, but all the data I read suggested that it's effect would occur over a long peroid of time - like 6-24 months. That is a long time! I would also challenge the notion that you cannot do the VED because of it - you can do the VED with less negative pressure, and still benefit from it. Just don't pump it so negative that petechiae appear (yes, those are the "red dots").
Tim
I would have to agree with Tim on the Pentox. This (or any other) medication or supplement is going to take a LONG time to do its work. Reversing fibrosis in ANY area of the body is really a matter of trying to make water flow up hill. Its not easy to do. I have seen a lot of progress from the supplements I am taking, but if I were to have judged their value within a mere six months, I would not be taking most of them. I take them because of the research behind them that indicates that they SHOULD be beneficial. The one exception where I did see more dramatic results was with the broad spectrum E. But I believe a person should be able to safely take this with Pentox AFTER discussing it with there doctor. Ditto with the VED (I think that Rutin and Horse Chestnut *Horse Chestnut struck because of dangerous anti-platelet issues - modified 01-15-07 by George* Pycnogenol can help with the petechiae, in addition of course to Tim's common sense advice). So, Danny, while I wish you the best in attempting the non drug approach (actually most of these supplements are drugs, we just don't call them that), I am not sure you are making the right decision in giving up on the Pentox. But ONLY you and your doctor can make that decision. In any case, I think a larger part of finding success in any form of treatment is dealing successfully with the larger picture which I have just referenced in the "Causes" thread.
- George
Rico I have to agree with Tim here. The research that I have read (much of it referred to here) is extremely heartening. It suggests that it can actually make fibroids shrink and even vanish. Even if it meant putting off the VED for a couple years, that still seems like a better deal to me. Reduced fibroids suggests reduced/delayed progression of the disease. Its never too late to stretch things out again, but evidence suggests that its better to attack the fibroids early. It makes sense to me too.
Anyway, I have been on the Pentox for a little better than a month now. I have adapted to the stomach effects and only get upset if I take it on an upset stomach. (As an aside I find yoghurt to be very helpful in setlling things down but I imagine that would be a pretty individual preference)
It is too early to tell since I cannot perform any accurate measurements, but I imagine there to have been slight improvement in the size of the plaques. Notice i chose my words carefully. But I am hopeful.
They checked at 6 mo. But, the study continued 2 years (24 mo.)
Improvement continued.
The study posted on http://repositories.cdlib.org/cgi/viewcontent.cgi?article=3908&context=postprints continued one year.
it has been mentioned here before but I will put my 2 cents in. Pentox is not a 3 month cure for Peyronies Disease. Peyronies Disease has no cure. That is why we are all here. I can not imagine expecting improvement in a few months from Pentox. It simply stops fibrosis and gives the natural turn over in tissue a chance to build normal collagen a bit faster than it build plaque or scar tissue. So if effective it means every month your body would naturally would gain imperceptibly on the disease. Over 12 to 24 moths it would become perceptible.
Did you ever watch a surgery incision normalize? It takes years. Would anyone expect to take a pill and watch it disappear in a few months?
The problem with these medications in my opinion is the blood flow and the legs. I think it inflames the knees if you do any sort of exercise. Also, it just feels weird. Your normal leg endurance is not the same. In the studies of radiation, it shrunk fibrosis, but only led to a 30% increase in mobility, so the original tissue did not magically reappear. And in the study about palpable fibrosis of the penis, that is in the corporal bodies, which is not the same as in the tunica. Apparantly in the other study, it had no effect on the hourglass deformity which consists of changes in the tunica, as is my understanding, so what we're looking at here is possibly lumps. The study is talking about preventing fibrous tissues in the corporal bodies. Lumps on the penis come on very quickly, as my experience after injury, and although I was actually on Potaba at the time when injury happened which caused the subsequent lump, the minute I stopped it (after a month), that lump blew up. So if you wanted to prevent some sort of fibrosis, you'd have to be on it right at the time the injury happened or near abouts, and you'd have to continue that therapy for a long time. And even then, is that going to be really any better than a natural course of healing? All these things going on in the penis, like the hourglass deformity (what is that by the way?)- apparantly it is a change in the tunica to support some area further down from buckling or bending, are there for functional reasons to an injured dick. If the lump goes away after some time (maybe), is that worse than taking some medication that prevents the lump, but what improvement is that going to have? Let's say you do prevent something from occuring and you take it for two years. Who is to say that after this two years (you of course abstained from sex and masturbating so as not to aggravate the injury during this time) the penis is now weak because natural healing couldn't take place? By the way, if there is any sort of inflammation in the penis, I would advise against masturbating or having sex, as that will aggravate the inflammation.
Part of me definitely agrees with this. And I guess that's the problem with Western medicine (or one of many problems). A doc comes in, we talk for what was probably ten minutes and he hands the decision from on high to stop meds. Now if I called and put up a fight I could probably get the scrip for pentox extended. And maybe I will do that, I'm not sure. But the whole notion of being at the mercy of a doc (and I'm speaking generally here, not about my uro specifically) who doesn't spend more than a few minutes looking at the condition, asking questions, etc. is appealing less and less to me. I realize that the non-prescription supplements that are available are drugs too (as is food if you really break it down to the basic level). However, at least with them I can control when/if I take them.
As far as viagra is concerned I'm actually glad he told me to stop that. First off, it's really expensive. Second, I have a little bit of difficulty being on something for an extended period of time that is as powerful as viagra. Just an intuition there.
And I'm going to keep up l-arginine. No question there.
So it's just the pentox I need to make the decision on. Hmmm...
Quote from: Hawk on January 12, 2007, 10:41:34 PM
it has been mentioned here before but I will put my 2 cents in. Pentox is not a 3 month cure for Peyronies Disease. Peyronies Disease has no cure. That is why we are all here. I can not imagine expecting improvement in a few months from Pentox. It simply stops fibrosis and gives the natural turn over in tissue a chance to build normal collagen a bit faster than it build plaque or scar tissue. So if effective it means every month your body would naturally would gain imperceptibly on the disease. Over 12 to 24 moths it would become perceptible.
Did you ever watch a surgery incision normalize? It takes years. Would anyone expect to take a pill and watch it disappear in a few months?
So I was checking out the label on my hemp protein powder yesterday and noticed that it has 1.5 grams of L-arginine. Which got me thinking about what foods have significant forms of l-arginine. In particular I'm wondering if there are any whey protein powders that have a lot of l-arginine. I'm doing a lot of smoothies lately and this might be a great way to get more l-arg into my diet. I'm going to be taking a lot of pills already on "George999" plan and so this will make it all a bit more manageable. :)
I just subscribed to Consumer Labs http://www.consumerlabs.com (http://www.consumerlabs.com) and checked out my supps. Although I found mostly good news. There was some bad news related to the Ginkgo I am taking (won't get it again), and especially the Horny Goat Weed. The Ginkgo was inexpensive and Consumer Labs found it to be safe but highly deficient. The Horny Goat Weed is another story. They reported significant lead contamination. Not good for my hypertension! They also reported lead contamination with other brands. Fortunately, I have already reordered and chose a brand that though untested, has a good track record (other products by them were tested and found to be consistently OK). I think that some manufacturers are simply more careful than others. Since I do not want to create any potential legal issues for this website, I suggest that if you are taking or are going to start taking horny goat weed, you PM me and I will advise you as to the offending manufacturer. I will also say that Consumer Labs charges $27 per year for their research and that was a good investment for me. And that certain manufacturers and distributors had consistant clean reports on their products. That list includes Puritan's Pride (no surprise there), Vitamin World, Nature's Way and Now Foods among others. I am going to try to stay with those vendors as much as possible from here on. The vendor I was purchasing the HGW from (not the manufacturer of the product, they don't accept sponsorship by manufacturers or rebranders Oops! Actually not true, apparently Puritan's Pride is a sponsor.) is also a commercial sponsor of Consumer Labs and they, at this point have pulled the product in question, so perhaps they are monitoring Consumer Labs test results which would be a good thing.
- George
In the past I have mentioned Horse Chestnut as something that strenghthens capillaries, and indeed it does. But it also has another effect that I just discovered. It has an anti-platelet activity similar to both Ginkgo and Pentox. That means that these three taken together could be a dangerous combination. In fact the recommendation from the medical community seems to be that any of these taken in combination should be under the direct supervision of a doctor and should be followed up by blood tests measuring platelet activity to make sure you are not puting yourself in danger. Another substance that strengthens capillaries and blood vessels is Pycnogenol, which along with Rutin, carries non of the risks of Horse Chestnut and in fact, has been shown through recent research to be more effective than Horse Chestnut.
- George
Based on the George999's post on his improvement (https://www.peyroniesforum.net/index.php/topic,466.msg6334.html#msg6334) and the fact that it matches my general knowledge of human nutrition (e.g., anti-inflammatory supplements, etc.) and doesn't require any "doctor's intervention" I'm strongly contemplating following his supplement routine. I'm already taking a fair amount of the stuff already but thought it might be helpful to set up a post that helps people who might want to do likewise. I'm big into ordering supplements online because of the convenience and price savings. So what I'm thinking is perhaps to list of the supplements and identify the best brands and the best places online to buy them. Here's the list for starters. Anyone want to take a crack at starting to identify some of the best brands and places to buy them.
Aloe Softgels (2 per day) (Anti Inflamatory)
Full Spectrum 400IU E from PDI (2 per day) (Anti Oxidant)
Neprinol (1 per day) (antifibrotic)
Fish Oil (1 per day) (anti-inflammatory)
Vitamin K2/D combo (1/2 per day) (to counter Vit E blood thinning effect)
Quercetin/Rutin (1 per day) (to strengthen vascular system)
Vitamin B6 (1/2 per day)
CoQ10 (1 per day) (to benefit vascular system)
Natokinaise (1 per day) (anti-fibrotic)
Time Release Vitamin C (6g per day) (Anti-Oxidant/Vascular support)
Horny Goat Weed (2 per day) (PDE-5 inhibitor/NOSe support)
Korean Red Ginsing (1 per day) (PDE-5 inhibition/NOSe support)
Baikal Skullcap (1 per day) (NOSi inhibitor/antifibrotic)
Pygnoginol (1 per day)
Arginine/Lycine/Proline
Maca (2 per day)
Garlic (2 per day)
Danny,
Please be aware that that info is a bit dated and some of those I am no longer taking:
Aloe Vera (No longer taking because of possible interaction with new blood pressure med - thiazyde)
Vitamin E - Still taking, but taking the much less expensive NOW Foods brand broad spectrum instead - their products are highly rated in quality by independent lab. Vitamin E IS the mainstay of my supplement treatment.
Neprinol (No longer taking this supplement, I consider it to be not cost effective at best, and at worst, useless)
Fish Oil - Still taking, very important part of my supplement regimen. Using Costco brand currently.
Vitamin K2/D Combo - Still taking twice a week. The rest of the week I am using straight K2 out of concern for Vitamin D overload. Also taking K1. These are REALLY hard to find. The K2 I am using is Jarrow Formulas, the others Source Naturals. I am personally not happy with either brand in terms of quality control, but it is difficult to find alternatives.
Quercetin/Rutin - Still taking. Currently using Douglass labs, shifting to NOW Foods w/o Rutin since my current Vitamin C contains Rutin.
Vitamin B6 - I have replaced this with one high potency broad spectrum B complex tablet per week, currently Walgreens, but will probably shift to NOW Foods B100 after my current supply is exhausted.
CoQ10 - Still taking, using Costco "TruNature".
Natokinaise - Still taking, using Wobenzym, after that to Source Naturals, but next order will be NOW Foods who now produce this product.
Time Release C - Still taking, now taking Natural Factors Time Release brand with Bioflavinoids, Hesperidin, Rutin, Rose Hips .
Horny Goat Weed - Still taking, now taking Nature's Way - watch out some of these brands are lead contaminated.
Korean Red Ginseng - Taking only occasionally, plan to quit this one out of concern of blood pressure implications.
Baikal Skullcap - No longer taking out of contamination concerns.
Pygnogenol - I have replaced this with a Resveratrol/Pygnogenol/OPC combination at 2 per day, Country Life brand.
Arginine/Lycine/Proline - I have replaced this with SAN VasoFlow
Maca - Oh yeah ... good stuff! Still taking. Will be shifting to NOW Foods brand with next order.
Garlic - Now and then.
I have also added the following:
Ginkgo - Taking Nature's Herbs brand at this point.
Plan to add:
Acetyl L-Carnitine - Heard so many good things about this, plan to order NOW Foods brand.
Tribulus - Not sure how this fits in with Peyronies, but I suspect it does somehow. Its an interesting supplement, plan to try NOW Foods Brand.
In addition, I am finding the information in the book "YOU: On a Diet" extremely helpful in terms of how to radically and permanently lower persistant, low level, systemic inflammation, which I believe will have a major positive impact on the healing process, which in the case of Peyronies, has gone out in left field. My regimen maintains some key core components but on the periphery I am constantly making minor tweaks and dropping stuff that I can live without and moving on to new things, always trying to learn and follow the mainstream research on fibrosis and healing.
- George
Well guys, I am currently experiencing a significant setback on the Peyronies front over the last few days which is rare for me. A fine band of plaque between two plaque nodules has thickened and tightened causing a bend that wasn't there before. At the same time, the nodules themselves have remained more or less unchanged. I have been wracking my brain to try to figure out what I have changed in my routine that may have contributed to it. Then it occurred to me that I recently discovered that the HGW I was using was lead contaminated. These were big old 1200mg tablets and I was taking two or three per day. At that time I dumped the remaining ones out and immediately switched to the more common 500mg capsules at two per day. So I am suspicious that the resulting drop in daily Icariin intake has affected me adversely. However, at the same time, my blood pressure has dropped noticeably, and I am hopeful that this is indicative of getting rid of the lead issue. Apparently the lead content of the former tablets was nearly six times the legal limit for supplements in the state of California and here I was taking up to three of them a day. So at this point, I am doubling up on the new capsules, hoping that that will drive back the Peyronies again.
PS - More interesting stuff on inflammation in the news today - researchers have discovered that men with periodontal disease have a 64% increased chance of contracting Pancreatic Cancer and they are attributing that to the effects of systemic inflammation being a major suspect.
Sorry to hear that, George.
My doctors are now arguing amongst themselves as to treatment. I looked for Gamma vitimin E and in england found none! They import from the U.S. What is it again that sets apart Gamma and Alpha?
I have book marked the Now health site.
In England I can order a Gamma complex 50 ml ? made by Sargol? for $21.50 See I have already forgotten I should write it down.
I could have had Peyronies for a year or 6 months and I cannot feel any consistant shape of the plaque. I had better self examine more thoroughly and on a daily basis as I do not know how it is progressing.
George - sorry to hear about the new lesion. It may also be unrelated to anything that you have done - cause and effect is so darn hard to figure out.
Your comments about periodontal disease are also appropos. By finally dealing with a chronic tooth problem, I noted that my progression of Peyronies Disease stopped. Again, cause and effect is hard to prove, but I will stick with self-care if it seems to help!
Tim
George:
You said a bend is there that wasn't before, is this a extreme bend? And did you get any hour glass effect...
I know inflammation can go in spurts, and become inflammed and be affected by other health issues or stress....
My condition hasn't change much lately, my only thing is that I don't dwell on it really either.... I'm not happy with it, but I have come to terms that it is going to do what it wants to.... one can only try and live with it and be as happy as one can with this terrible illness(diesease) and hope that someday someone like auxl will perfect the aa4500 or the VED or something works for them.... done of us have the same condition exactly and we will all have to go down a different path with are condition.....all the vitamins in the world won't bring one back to normal, but a healthy life style can make one more apt to heal better, and this is also from a mental stand point, which for me is the hardest part of peyronies to deal with..
Rico
You might want to check out iherb http://www.iherb.com (http://www.iherb.com). For UK customers specifically: http://www.iherb.com/store/Info/Shipping/uk.aspx (http://www.iherb.com/store/Info/Shipping/uk.aspx). I have been ordering from this US based company for some weeks now and they have executed my orders flawlessly. So I can highly recommend them. They also have a wide range of products. Also, if you are ordering HERBAL products. Note that MANY herbal products are either less potent than they claim on the label or are contaminated with lead. So I would suggest that it would be worth while if you are using herbals to join Consumer Labs http://www.consumerlabs.com (http://www.consumerlabs.com). They do independent testing on a wide range of supplements and herbs. The cost is only $27 US per year and it can save your health. And while they do not test every product category, by reviewing their tests results, you can get a good idea of which manufacturers and distributors are 'clean' and which are 'shady'. I am to the point where WHENEVER I see a product contaminated with lead or any other toxic substance, for example, I will NEVER, EVER, buy ANY product from that company. In my mind it is just too easy for these outfits to do routine lead tests on their bulk purchases and so their should absolutely no excuse for shipping a product contaminated with lead.
- George
Thanks all for your kind words. After a day or so of doubling the HGW, the situation is already much improved and I feel like I am back on track again. I really had no idea how important the HGW-Icariin was in keeping this thing under control. It really seems at this point that abruptly cutting the Icariin in half had a major effect on me, at least that is my hope.
Tim - I can certainly believe that the problem with your tooth was exacerbating your Peyronies. I have every suspicion that systemic inflammation from ANY source has a huge impact on this disease that is not yet fully appreciated in the medical community or in our community at large. I am so glad to hear that you are on the mend again.
Rico - Good to hear from you again. The bend was never significant but it was obvious, and it was new, and that was what was disturbing to me. At this point as I have stated above, increasing the HGW seems to be taking effect. And I agree as to the healthy lifestyle issue. The book I have repeatedly mentioned - "You: On a Diet" has been a real eye opener for me in that it makes all the connections and is written by medical pros whose credentials are above reproach. They drive a stake into more popular myths about healthy living than you can imagine and gore plenty of sacred cows in encouraging people to eat certain foods that have traditionally been considered unhealthy. They also address exercise in a way that you would, more than anyone, appreciate and they vindicate much of what you have been saying about it. At about $15, it has been one of the best investments I have ever made. Now, my big job ahead is to try to empty the fridge of all those toxic foods they point out in the book :).
- George
George:
I'm glad you are feeling better or your condition is.... I do find it hard to believe horny goat weed has anything to do with it, just my opinion.... and for most people with peyronies I don't think a vitiamin or supplement is going to make a large bend or hour glass get much better.... it seems that you never had a really strong case of peyronies, which is good for you. Over all health with minor peyronies is a good choice to keep it at bay....
I feel that the mental aspect of this diesease plays a bigger role than we might think also.... the stress of it all is terrible and probally for most the hardest thing to cope with and plays on your condition and over all health... for me at least it has... it can take the joy out ones heart and this will make ones self esteem and over all health go down hill....
I think one might want to look at this more than anything, one has to find joy again to get well... easier said than done...
Rico
I've now been on pentox over a month, haven't missed a dose thus far. Initially it seemed to give me really good flaccid hang and solid full erections. Lately that has lessed somewhat, but its still better than before. Bloodflow seems to be increased to my penis, I don't know if this is solely from the blood thinner or not ??? Overall I've had virtually no side effects other than the weird feeling in my legs and ankles in the beginning, this has no went away. I do believe that someone mentioned pentox can weaken ones immune system, did anyone hear about this? I found that interested since I've had a middle ear infection and minor cold since starting the pentox, but who knows could just be a coincidence. Besides this I"m still taking L Arginine at 500mg twice per day, and pumping with the VED B Cylinder every other and every third day. It seems as if I have found a good balance and for now I'm at least holding my peyronies in check.
I just got my order of Puritan's Pride HGW. I had been buying a brand from the local grovery store (Giant Eagle) and it was often discounted to 4 bucks for a bottle. When I got the new stuff yesterday it looked exactly the same. The manufacturer of HGW for Giant Eagle is "Nature's Bounty". Since they looked so similar, I googled the two names and found out that Puritan's Pride and Vitamin World are wholly owned subsidiaries of Nature's Bounty!
Oh well - if they pass muster for contaminants that is what counts. When I scan for "bad hits" on Consumerlab.com, all three brands pass muster as reaching the criteria for safety. Then I got to thinking about consumerlab.com. A review of a google search for consumerlab.com and "fraud" got me to a ltter from the FTC to a consumer watchdog group called the "Council for Responsible Nutrition" that said:
"Thank you for your January 12,2005, letter and subsequent materials regarding ConsumerLab.com, LLC ("ConsumerLab) and its Product Review and Voluntary Certification programs for testing dietary supplements and similar consumer products ("Test Programs"). Council for Responsible Nutrition alleges that ConsumerLab's "entire business model represents an egregious form of consumer fraud and deception," and asserts, among other things, that
* Companies are pressured . . . into paying a fee" for testing under the Voluntary Certification program to avoid potential negative consequences of having their products tested under the Product Review program; and that
* ConsumerLab's Test Programs and its reporting of test results "are likely to mislead consumers into believing that ConsumerLab is operating in the public interest and cannot be influenced by any outside party."
The Commission has been directed by Congress to act in the interest of all consumers to prevent deceptive or unfair acts or practices, pursuant to Section 5 of the Federal Trade Commission Act, 15 U.S.C. 3 45. A representation, omission, or practice is deceptive if (1) it is likely to mislead consumers acting reasonably under the circumstances; and (2) it is "material," that is, likely to affect consumers' conduct or decisions with regard to a product or service. An act or practice is unfair if it causes or is likely to cause injury to consumers that (1) is substantial; (2) is not outweighed by countervailing benefits to consumers or to competition; and (3) is not reasonably avoidable by consumers themselves.
In determining whether to take enforcement or other action in any particular situation, the Commission rnay consider a number of factors, including the type of violation alleged, the nature and amount of consumer injury at issue, the number of consumers affected, and the likelihood of preventing future unlawful conduct and securing redress or other relief. After reviewing the complaint and related materials, staff is not recommending agency action at this time. The Commission reserves the right, however, to take such further action as the public interest rnay require.
Thank you for bringing Council for Responsible Nutrition's concerns regarding ConsumerLab.com, LLC to our attention."
Bummer, I thought.
So then I looked at who this Council for respon.. well you know.. so I googled them and the word fraud. Interesting result!
"The Council for Responsible Nutrition (CRN) is a trade association that represents the interests of about 70 large dietary supplement ingredient suppliers, manufacturers, and other companies that service the industry. On May 15, in the wake of a "Good Morning America" exposé, CRN issued a letter urging federal agencies to crack down on coral calcium advertising. The third paragraph states that CRN is concerned that "permitting continuation of such highly visible and fraudulent claims" will undermine consumer confidence in . . . . those responsible companies who provide quality products based on sound science." The timing of CRN's letter is interesting. Although outrageous claims for coral calcium have been flooding cable television and the Internet for at least two years, CRN did not act until the major media began debunking them and it became obvious that regulatory action will be taken. "
So, a group of supplement suppliers turns out to be this "consumer group" - and they report the consumerlab.com to the FTC!!!
Ah - what a man can learn on his break. Time to go back to clinic.
Finding out the truth about what supplements are worthwhile might continue to be somewhat difficult, it appears.
Tim
Tim:
I'm curious that you feel pentox and the pav is the best oral treatment available, and then you aren;t taking pentox but will take hgw, which too me is a waste of time to take.... and who knows what you are taking also.....
It just makes me curious, since pentox gives you blood flow to that area which also helps with erections.... why you mess with hgw.... have you went to a urologist lately?
Rico
Rico, HGW contains Icariin which has similar effects to Viagra. Viagra just does a better job at it. I don't know about Tim, but in my case I am taking HGW instead of Viagra because my Peyronies is simply not severe enough at this point to warrant paying a lot of money for Viagra. Tim just might be in a similar situation. That doesn't mean that either one of us consider Viagra to be a bad medication. It is just very expensive, but if you need maximum action, you get it with stuff like Viagra, Cialis and Levitra, OK?
Tim, I am convinced that Consumer Labs is on the up and up and CRN, the industry watchdog is furious at them because they are outing the scowflaws in the supplement industry and CRN doesn't like that. Their complaint to the FTC which you referenced, was investigated and got nowhere. It is very interesting that Nature's Bounty owns both Puritans Pride and Vitamin World, but that is irrelevant to the issue. So is the fact that Consumer Labs solicits products for testing, its part of how they pay for their overhead. If you check out their list, there are plenty of products that they tested that were from companies not cooperating with their testing program that also passed their tests. The problem is there are a lot of supplements out there that are misrepresented and/or contaminated and CRN is trying to cover that up. You can make your own choices, but when I consider the alternatives, I prefer to listen to an independent testing organization. The fact that they are attacked by an industry lap dog is to me just that much more evidence of their credibility. Just face the facts. These supplement companies have plenty of money to sue them for defamation if they really were skewing the test results, but CRN hasn't even alleged that they are. Isn't that interesting? Probably its because they're not!
- George
Great discussion guys. A few follow-up questions and suggestions:
1. George, you've mentioned Icariin a bunch but I don't see it in your list of supplements. Can you share the type of Icariin you are using?
2. Also, would you mind sharing dosage for each of your supplements with us? Sorry to be a pest. :)
3. I'll second the recommendation of You on a Diet. Got it this week and paged through it and it looks good. Two other books that I would recommend are The Hardness Factor and Fantastic Voyage.
This is great stuff. I feel like maybe we're pioneers when it comes to Peyronies Disease and someday a bunch of people are going to look back and be extremely grateful to us in terms of figuring out what helps to diminish or eliminate the condition. :)
Danny, the Icariin is a component of Horny Goat Weed. I am currently using Nature's Way Horny Goat Weed, since in general they seem to have a pretty good record of getting their formulations right and keeping the lead and other contaminants out although they did get caught selling Nettle with lead contamination, but, to their credit, they immediately did a recall and apparently resolved the problem by changing suppliers. The only company that I know of that has actually passed independent testing on Horny Goat Weed with a clean bill of health is Nature's Bounty mentioned by Tim. According to Tim they also produce the Vitamin World and Puritan's Pride brands.
As for the dosages, that is difficult since I adjust them often, but usually I simply try to follow the labels. The major exception would be Vitamin E which I am taking 2000IU and Vitamin C which I am taking 6-8 grams per day. But I don't plan on keeping that up forever. A few more weeks and I will probably give my body a break around the time I start taking Acetyl L-Carnitine. But if you take that much Vitamin E, be very careful and be sure to take plenty of Vitamin K and Vitamin C with it, as not doing so can be deadly. I would not recommend to anyone that they take that much, but it is working out for me, but their are also plenty of risks that go along with it, and hopefully I am mitigating them, but it is kind of uncharted territory so PLEASE don't take this as a recommendation. Other wise I pretty much go by the label. The VasoFlow would be the other thing - I am taking less of that since I really don't qualify as a body builder - at least not yet.
You: On a Diet is just great. The more you read it, the more you'll get out of it. These docs are really onto something.
- George
Misc replies:
I take HGW because it is easier on my system than Viagra of cialis is. No hangover, or headaches! Based on erection quality, it definitely has an effect that is a step down from Viagra but leaves me feeling pretty normal in my erectile function.
I am holding off on Pentox, but plan to start it soon. My main holdup is being sure that I do not have any reasons not to take it, so I am looking into that with my doctor. My urology appt is coming up. Also, I am looking into why I have a slight arthritic inflammation in several finger joints - I would like to see if I have rheumatod factor, and if I do (and need to treat that) if it will be affected by Pentox.
Tim
Does anyone know anything about N-acetyl cysteine (NAC) and whether it might be helpful for Peyronie's? From my research, it seems to be helpful for some other forms of fibrosis, but haven't uncovered anything specific to Peyronie's.
Any input would be appreciated.
I have taken NAC since prior to Peyronies Disease because it is a pre-cursor to glutathione which exhibits anti-tumor properties (prostate cancer). I cannot say if it has a place in treating Peyronies Disease since I developed Peyronies Disease while taking it. My Peyronies Disease could be worse since I have lost size and have a dent but no longer have any real curve. Who knows what might have been without supplements???
I do not know of any action against fibrosis but our partners over at the Dupuytren's Society have mentioned it on their forum. By the way, they have also achieved the BTS Dupuytren's site since all forums at the BTS are pretty much defunct. http://www.dupuytren-online.info.
Hello. I am new to this forum. I am interested to know if anyone has had success using sski and dmso or the herbs that are advertised on the web for Peyronies Disease. One herb formula offers a 60 day money back guarantee, though I am skeptical. Dr. Jonathan Wright who seem generally reliable and intelligent recommends dmso and sski. Any useful info would be appreciated.
QuoteDr. Jonathan Wright who seem generally reliable and intelligent recommends dmso and sski
.
I have my doubts having read this: http://www.quackwatch.org/04ConsumerEducation/Nonrecorg/aqa.html
Sorry,
Liam
Dear forum members,
I read a article by a Veterinary group who where using Penotoxiflylline for some skin diseases on there dogs, they like what they have seen and mention that they don't have case studies on the generic brands, but the anecdotal comments are that the brand Trental works better....I myself was prescribed trental but my order was filled generic....
I then was reading article by a western doctor who is using western medicine along with herbs, he is prescribing for better eye sight for some of his people a combination of ginkgo biloba/pentox/fish oil.... he says the pentox makes the blood cells smaller and the gingko pushes them better and the fish oil(omega3&6) softens the membranes.....
I don't know if my insurance states they have to go with generic, but I'm going to try a get a refill of trental, although I never hear before that generic isn't as good?
I have only read one article that a person had a problem with ginkgo and pentox mixed before, and he was in ill health anyway..... I think I'm going to go back using some ginkgo along with my pentox, I have been doing fish oil for sometime now and feel it is good for over all health anyway...
Rico
Rico, I THINK you should talk to your pharmacist about the Trental. My guess is that IF you INSIST on Trental, your insurance company should still reimburse you based on the cost of the generic and you will need to make up the difference. That is sort of what you would be faced with. And no, this is not the first time I have heard of generics not being as good as the original. It is not common, but it does happen. I can also tell you that strange things happen when comparing competing drugs. For example, for YEARS I took Septra without incident. And then for some reason my doc switched me to Bactrim (which is the identical product made by a competing company). Instantly with the first dose I got an allergic reaction. That has always made me suspicious. And then I find this website years later which is basically a forum for people reporting allergic reactions to this drug. More than 7 out of 10 are reporting reactions to Bactrim with only 1 out 10 complaining about Septra. These are the two leading brands that both claim to be the same drug formula. Whats wrong with this picture?
As for Ginkgo and Pentox, you can protect yourself by requesting your doctor to periodically check your platlet coagulation factors to make sure you are not getting into dangerous territory. I think this is a simple blood test, your doc should be able to tell you more. The fish oil is good stuff but can thin the blood as well, but the platlet factor is what I would want to keep an eye on.
- George
PS - Over on causes we have somehow gotten off on a fascinating discussion on pirfenidone which, hopefully, Hawk will discover and export over to this thread where it probably belongs.
Quote from: George999 on January 24, 2007, 06:12:39 PM
Over on causes we have somehow gotten off on a fascinating discussion on pirfenidone which, hopefully, Hawk will discover and export over to this thread where it probably belongs.
George, I moved that discussion to "Developmental Treatments"
So I'm heads-down on the process of triangulating in on a "perfect" supplement regimen. I'm currently using three sources:
#1 - George999's supplement program ("G999")
#2 - The book Fantastic Voyage ("FV", Ray Kurzweil's supplement routine is listed on pages 144-145, it is quite extensive :))
#3 - The book The Hardness Factor ("THF")
I'm basing my supplement rountine primarily off of George999's while looking at Fantastic Voyage and Hardness Factor for confirmation as well as other possible supplements to consider.
So here's what I've come up with that I'm going to use for sure (along with where I'm planning to purchase them from):
L-Arginine - Vasoflow ends up being $0.27 per 1.5 g while NOW's L-Arginine powder clocks in at $0.06. I'm going to go with the latter until I can find a compelling reason to do the former, planning to do 1.5g 2x/day in smoothies + about L-arginine that I get in hemp and whey protein powders
Fish Oil - Whole Foods 1g 3x/day (it's 18%/180mg EPA and 12%/120mg DHA), might switch to this one as it looks good, has signficantly more EPA/DHA and seems affordable: http://www.t-nation.com/readTopic.do?id=910074
Horny Goat Weed - Finishing up some from TwinLabs, Going to switch to Nature's Way once I finish the bottle
Maca - a rounded teapsoon which is approx 6g 2x/day in smoothies
Aloe Vera - 2 oz. of aloe vera gel 2x/day in smoothies
Multi-Vitamin - Taking Centrum
Alpha Lipoic Acid/Acetyl-L-Carnitine - 525 mg/Carnitine + 225 mg/ALA 2x/day, have some from Nutritech-Nutritionals that I'm going to finish and then look for a more reputable brand
Pycnogenol Extract - Taking some from some crappy brand I got on eBay (definitely am going to look for a more reputable brand when I finish what I have)
Ginkgo Biloba - Planning to start now that my Pentox is gone...any suggestions for brands?
Curcumin - Mentioned in FV as an anti-inflammatory, planning to start...any suggestions for brands?
CoQ10 - Planning to star...any suggestions for brands?
Quercetin - Planning to start...any suggestions for brands?
Vitamin E - Planning to start...see below...
That's it for supplements. I know it sounds like a lot but after looking through the FV book and seeing what those guys do and the impact on health I think it's fine (as long as I'm getting the supplements from good sources.
Now I do have a couple of questions:
#1 - The various vitamins (C, K1, K2, D, B6, etc.) that G999 takes...is the rationale here to simply get a higher dose than you would get in a multi? Centrum contains all of those (although it just lists "K" not K1 or K2). Since I'm already going to be popping a lot of pills I'd love to not have to do all of these individually if I could avoid it.
#2 - I have a lot of "Vitamin E with Mixed Tocopherols" sitting around from back when I first developed Peyronies Disease. I'm wondering if I should take those until they're gone or move to the NOW Foods Broad Spectrum. I know there has been a fair amount of debate on this but I can't recall what the verdict was.
OK, as if this post wasn't long enough I wanted to mention the supplements that were listed in more than one of the three books I read. I'm planning to take all of these expect Grape Seed Extract although I may start on that down the road.
Supplements mentioned by all three sources:
L-Arginine
Fish Oil/EFAs
Supplements mentioned by two sources:
Alpha Lipoic Acid (G999 & FV)
Acetyl-L-Carnitine (G999 & FV)
Horny Goat Weed (G999 & THF)
CoQ10 (G999 & FV)
Grape Seed Extract (FV & THF)
Quercetin (G999 & FV)
OK, the fingers are tired. Please feel free to critique what I'm up to.
With all the recent discussion about NAC, I have looked it over and find it somewhat interesting and am planning to give it a shot. As for the Vitamin E, my take on all the discussion that has taken place on this forum is that it should at least be a "High Gamma" form of mixed tocopherols, but I prefer the full "High Gamma" + "All 8 toco Broad Spectrum" approach. Also the liquid aloe vera is not the same as the softgels I was taking (and will start taking again if I can get my doc to get me off the Thiazide), the softgels contain bitter medicinals which are filtered from the liquid products, so suit yourself, just an FYI. Costco definitely has the best prices on CoQ10 if you can get access to them, USP verified ingredients too. I am now adding ALC and simultaneously dropping my Vitamin E from 2000IU to 1200IU per day. I am currently strategically using Fibercon regularly and finding it useful for weight loss. I am expecting to receive my Z-Trim tomorrow and to use it instead of the Fibercon right away. I am currently at 166lbs headed down to as close as I can get to 140 from 185. I am already seeing results from that in terms of my BP and general feeling of well being. The Peyronies is pretty much in a holding pattern right now with no real visible progression or regression, so I continue to tweak, have patience, and observe the results. Life is good and its getting better!
- George
I have been taking l000 IU of full spectrum Vitamin E (w/all 8 components) for about 3 weeks along with varying amount of Vitamin K. This past week I developed a subconjunctival hemorrage of the eye (into the white part of the eye). While this type of thing looks a little scary I understand it is not something to be too concerned about unless it is recurring. The blood is gradually reabsorbed by the body, usually in a 2 week period. In an unrelated event, I had a small cut on 1 finger this week and found it difficult to stop the bleeding. This is very unusual for me. I have discontined all Vitamin E for an indefinate period while continuing to take Vitamin K & eating foods high in Vitamin K. This experience has made me much less interested in trying Pentox or a Pentox/Vitamin E combination.
Mark, sorry to hear that. For the record, I have been taking 500mcg of Vitamin K1 plus 100mcg of Vitamin K2 (MK7) daily. It is a really good thing that you stopped the Vitamin E right away under the circumstances. But the fact that you still are having a problem with your finger cut AFTER stopping the Vitamin E seems troubling to me. You might also want to do an inventory of any other supplements or drugs you might be taking that might have an effect on clotting (other than the Trental) and you also might want to get a blood test to evaluate your clotting factors INCLUDING platelet activity (which is affected by Trental and supplements other than Vitamin E). It is important to note that some people do have problems assimilating Vitamin K AND that some Vitamin K supplements (and they are really hard to find) might be deficient. So the only way to SAFELY resume Vitamin E would be to have your clotting factors monitored at regular intervals, which should be justified medically after an incident like this, since the level of Vitamin E you were taking is actually an amount that has been administered safely in the past with Trental without Vitamin K according to some of the research I have read, BUT they were most likely monitoring clotting factors.
- George
Just about ready to place my order. Here's what I've got:
NOW Quercetin with Bromelain 120 vcaps (Amazon)
NOW Curcumin (High Potency) 60 vcaps (Amazon)
Swanson Ginkgo Biloba Extract 60 Mg 240 Caps (Amazon)
Nature's Way Horny Goat Weed - Standardized Extract 60 caps (Amazon)
NOW L-Arginine Powder 1 lbs (Amazon)
Nature Made® CoQ10 200 mg 60 Softgels (Costco)
Nature Made® Omega-3 Fish Oil 1200 mg 300 Softgels (Costco)
I'll be continuing on with these that I mentioned previously
Maca
Aloe Vera
Multi-Vitamin
Alpha Lipoic Acid/Acetyl-L-Carnitine
Pycnogenol Extract
It's a lot of stuff but given George999's improvement and what I've read in a few books lately (specifically Fantastic Voyage) I can make a pretty strong case for just about everything on this list. Not cheap but since I'm no longer spending $4 or so a day on Viagra and Pentox I guess I can splurge.
Planning to place the order tomorrow. Let me know if you see any room for improvement. :)
George999- I can't be certain but a few months back I may have had a pre-brain hemmorhage if that is possible from using vitamin e, alpha lipoic acid, acetyl-l carnitine and adding borage oil. On the bottle after the fact, the borage oil bottle said don't mix with other blood thinners and it may cause headaches in some people. What happened was after taking the borage oil and vitamin E that morning I had a sudden increase in pressure on the left side of my head while concentrating on a book. As the pressure built up I immediately stopped concentrating on what I was doing and the pressure went down (the build-up in pressure and the release was probably in the span of 3 seconds). Later on in the day, I felt hungover and I'm not sure if it was the supplements, but at times I had popping sounds in the back of my head when I would talk, but that sudden increase in pressure was startling. I found it difficult to concentrate for the next week like a hangover, but it could have simply been the supplements exerted some sort of an effect on me. I'm not sure if it was a small bleed or if the pressure of the veins or arteries increased dramatically and put pressure on my head briefly I don't know. It may not have been anything but simply was a drug effect, but I'm not too sure if drugs would cause a feeling of a sudden dramatic increase in pressure. This was not painful at the time like a bad headache so that probably rules out a brain hemmorhage, just a very sudden increase in pressure is what it felt like. I don't think it was anything dramatic though because there have been no after-effects as far as I can tell.
Also, as I'm sure it's been mentioned before, you want to ramp up the vitamin E slowly. I've heard from coumadin users that the risk of hemmorhage is greatest in the beginning when your body gets used to it. Now I'm speculating, but the reason the clotting factors are still thin a week after stopping vitamin E is that the vitamin E stays around in the system longer than coumadin. I have had a sensitive tongue and that may be from the supplements that I was taking as it thinned my blood. After stopping the supplements, I've noticed that my tongue is not as sensitive as before.
Many supplements and herbs (as well as drugs) do increase risks from bleeding. But there are numerous blood factors that can contribute to abnormal bleeding and only a specific blood test can determine which of those factors are causing the problem. A major danger is that one can assume that a certain herb or supplement is causing the problem while continuing to take the one(s) that is the actual cause. Supplements, herbs, and drugs interact in complex ways. Certain oils, fish oil for example, actually deplete the body of Vitamin E. So while fish oil contributes to bleeding by affecting platelets, it can actually protect against bleeding while taking Vitamin E due to the fact that it causes it to be more rapidly depleted. Vitamin E, on the other hand, depletes Vitamin K which is actually one of, if not the major factor which links it to bleeding. Knowing this, I would never take Vitamin E without taking Vitamin K concurrently. Like fish oil, borage oil also causes platelet issues. As for Acetyl L-Carnitine, I have never heard of it being associated with bleeding. And high doses of Vitamin E can, along with there anti Vitamin K effect, also cause platelet issues. But 1000IU seems too low to be causing platelet issues UNLESS a person is taking other platelet affecting supplements concurrently. In Mark's case (due to the Pentox) that might imply that this might well be a platelet issue, but he also might be having an underlying platelet issue that needs to be addressed since the combination he was taking really shouldn't be causing him this much of a problem. Thus one does have to be careful with these combinations. I think it is also important to make sure to get plenty of Rutin to strengthen the vascular system when taking any blood thinning substances. As for Coumadin, it is almost exclusively an anti-Vitamin K, anti coagulation drug (like Vitamin E only far stronger) and has little to do with platelets. The major anti-platelet drug on the market today would be Plavix, which I would assume would be much stronger in that regard than Pentox. And thats why I find Mark's experience puzzling. But certainly these sorts of experiences should be reported to ones primary care physician for evaluation. And, in the mean time, all suspect supplements should be stopped.
- George
One could diagnose a brain bleed with a CT or an MRI of the head. One cannot diagnose that from symptoms like those described (which sounds like atypical migraine to me).
It sounds like a vascular event of spasm of a vessel, but who knows? I have learned as I get older that my body does inexplicable things and pains come and go sharply at times, and if I ride them out, they go away.
To tell (if possible) one has to go to the doctor.
Tim
I have read some doctors have recommended with the verapamil shots to take also propionyl-l-carnitine... I have read that this plc helps with thinning blood... what is the difference in alc? Has anyone taken this supplement?
Rico
Here is the reference:
http://cat.inist.fr/?aModele=afficheN&cpsidt=13910563
It is one study, and not that good IMHO. The mechanism of action for PLC is unclear. I took it, along with ALC for some time. I stopped it when I got worse (perhaps because of arginine without pentox), and did not restart it. It can be obtained in bulk from bulknutrition.com (I packed my own capsules).
Tim
To be clear, I have never used Pentox. I have used up to l000 IU of Vitamin E daily & also up to 2100 MG of borage oil daily. Until I read the recent post about borage oil I did not know of any platelet issues with it. I took it for its anti-inflammatory properties. Will now try to research any blood thinning properties it may have. The bottle of NOW brand borage oil has no blood thinning warning on the label.
Article "BLOOD THINNERS & NUTRITIONAL SUPPLEMENTS": http://www.drlam.com/opinion/blood_thinners_and_nutritional_supplement.cfm
Thanks Mark for the excellent link. Lots of good advice on that page! Certainly there is research that indicates that Borage Oil has an effect on platelets. But it should not be significant enough to cause a problem like you experienced. In fact this study http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=9107561&query_hl=9&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=9107561&query_hl=9&itool=pubmed_docsum) would seem to indicate that you where well within safe territory in terms of Borage Oil. So that takes us back to the Vitamin E, the effects of which are complex and vary from one individual to another. One issue with Vitamin E is that the body breaks it down into something referred to as Vitamin E Quinone which is an extremely potent anti-coagulant. So potent, in fact, that it has been suggested for use in place of Coumadin. And apparently, different people at different points in their lives produce different amounts of Vitamin E Quinone from ingested Vitamin E http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=41118 (http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=41118). But another possibility is that there might be some unknown interaction between Vitamin E and Borage Oil. Who knows? But there are no known interactions. Also for those of us taking broad spectrum E, here is an excellent read on gamma-tocopherol http://www.pdrhealth.com/drug_info/nmdrugprofiles/nutsupdrugs/gam_0115.shtml (http://www.pdrhealth.com/drug_info/nmdrugprofiles/nutsupdrugs/gam_0115.shtml). So in effect, gamma-tocopherol is also known to affect both platelets and Vitamin K related clotting factors. As I have previously posted, I have been taking 2000IU of broad spectrum E with no issues, but different people react differently, thats why we have physicians to try to help us figure these mysteries out.
I have ordered the following supplements to try and reverse my peyronie. Can anyone give advice if it is recommendable to take the following together, especially regarding Acetyl-L-Carnitine & L-Arginine together I have my doubts.
I would put my hopes on L-Carnitine for now based on the following article: http://cat.inist.fr/?aModele=afficheN&cpsidt=1142809 (http://cat.inist.fr/?aModele=afficheN&cpsidt=1142809)
Here's what I'm going to try:
* Natural Vitamin E (2x 250 IU per day, one of my urologists said it was "toxic" if I took 8OO IU per day or more, although he didn't leave a very credible experience in the first place ;)
(combined with Vitamin C)
* Acetyl-L-Carnitine 2g each day (2x 1gram)
* L-Arginine 500mg 2x each day
Anything else I should add, I'm not a big fan of taking drugs (since I probably got Peyronie from taking Finasteride/Propecia in the first place) so I hope this will suffice for me. :)
Those sound like good doses. You might want to add propionyl L-carnitine - you can buy it from bulknutrition.com in powder form fairly cheaply. They also sell ALC at a good price.
You might want to go up on your L-arginine dose if tolerated (probably well tolerated). I took about 2 grams a day total.
Some of us have tried a mixture of L-arginine with L-norvaline to block the collagen forming pathway that arginase mediates (norvaline blocks arginase). That should free up the arginine to work in an antiinflammatory way via nitric oxide pathways instead. Those NO pathways can be enhanced by viagra or horny goat weed.
Tim
ps - arginine and norvaline can be found premixed in "Vasoflow"
VasoFlow sounds like a good supplement, I'm going to give it a try. I would appreciate some info from those of you currently using it. How many are you taking? What time of day? With food or empty stomach? Thanks.
I have yesterday tried trazodone, which didn´t have the desired effects; although the penis was filled with more blood, it was still far away from an erection. and, the weird thing is, i got a curve, which I don`t usually have and which doesn´t occur when taking viagra or cialis. the curve was immense, like 45 degrees. as some guys have told me that trazodone got them good erections, i wonder why the effect is so different from me, and why it differs so much from the effect of viagra and cialis.
as this is my first post i´ll tell a little about the background of my penis-trouble: i am 23 years old, i had an accident five years ago, where my erected penis was bended. that did it, from that on i had trouble getting and maintaining an erection, and it got worse with time. i started taking cialis and viagra, which allow me to have sex, though the erections are far away from perfection. in time plaque evolved, had a iontoforesis, which improved conditions, but not too much.
so much about that, i´m grateful for having found this forum
one more thing: does anyone know a good europe-based mailorder for drugs?
Strange stuff Mr Mustard. I'm reminded of the old joke "it only hurts when I do this". Of course, we know the doctor's answer. I'd get off of it (trazadone) and fast. What is good for some is not good for all. Can't imagine why it would cause a 45 degree bend.
Good Luck
As one who introduced the trazodone recommendation to this forum, I have closely followed the results of those that post about its effects.
For startes, trazodone DOES NOT typically give good daytime erections. If it gave you a daytime erection that is a rarity. It should be taken with food prior to going to bed for solid night time erections for those that have no other way to get solid erections from oxygen rich blood. In this regard it is much better than ED drugs. However, I do not know that it has the treatment effect of reducing TGF-1 as ED drugs can. While it may enhance a borderline daytime erection, that is not the intention and ED drugs work better, even if they are a thousand times more expensive.
It is a fact that all three chambers of the penis are connected by many passage ways. This means that any blood flow directed to even one chamber will fill all three to equal pressure unless there is a blockage of chambers. Significant blockage would be rare. Even if it existed the source of your erection would not vary blood distribution. There could be a couple explanations for your newly identified bend. One reason is the degree of erection. It is common for Peyronies Disease patients to either see more of a curve on the way to an erection or to see a greater curve with a more rigid erection. If your erection varied then it would not be unusual to see a different degree of curve. The second and less happy possibility is that between the time that you got your last comprable erection and getting an erection with the trazodone, you have developed a greater Peyronie's based curve.
To reinforce what I have said, a physician can erect a penis with a shunt inserted anywhere on the penis shaft, meaning in any of the cavernosal chambers. In my humble opinion, there is NO way trazadone could be responsible for a curved erection. It cannot limit the distribution of blood to some of the porous cavernoa chambers. It also cannot prevent the tunica from expanding on part of the penis. These are the only two things that could cause a curve.
Finally there has never been even the suggestion of such an affect in any study, medical literature, or even any recorded anecdotal reports.
I can't find this information very precisely, on the forum, so I'll ask here, can anyone tell me what timing (morning, evening; before, during or after meals?) is the most recommended for taking L-Arginine and L-Carnitine.
Again thanks for the help.
As a new member (who feels like he needs one ;D), I thought I'd chip in...
I've been on warfarin (coumadin) for about four years following a valve job. The best site I've found for advice on interactions with warfarin is http://www.warfarinfo.com/ (http://www.warfarinfo.com/) - maintained by a guy with many years of experience at the sharp end (no pun intended) of this capricious drug. Al's site has great lists of interactions with medications, natural products and foods.
Having just started looking around at alternative therapies, I've realised that caution is needed with some of them in this area. Having said that, providing that you get your INR checked regularly - I self test - it's probably possible to cope with most things by "dosing the diet".
Oh, and of course, warfarin doesn't "thin" the blood - just extends the time it takes for blood to clot.
Ron
Quote from: Hawk on February 02, 2007, 10:32:57 AMThe second and less happy possibility is that between the time that you got your last comprable erection and getting an erection with the trazodone, you have developed a greater Peyronie's based curve.
i'm not sure if i have understood everything you've said, however, i can definetly rule out the "second and less happy possibility", as i have had stuffable and non curved erections using ED-drugs after the trazodone-incident. so traz is definetly not responsible for the curve, it just brought it to the light.
as to the curve that i got, it was immense and felt really weird - i touched one part of my penis and from within my penis it felt as if I'd be touching some other part, that's to say, the sensation didn't correspond to the part that i touched. but i have never had these curve before or after, and it does never ocur halfway on the way to an erection. that would take me back to the blockage of chambers ... (?)
Clearly your chambers cannot block and unblock with your choice of drugs. I you now observe no lasting changes in your curve, then it is not a structural change. That only leaves the degree of erection from one drug vs another.
I have read claims that grape seed extract's anti-oxidant powers combined with full spectrum Vitamin E can provide temporary enlargement to compensate for lost length and girth. Anyone? Also, what is the best price + quality full spectrum Vitamin E, and must it be purchased on the Internet or can it be obtained for not much more at your local yocal natural food store.
Robert
Vitamin E and Grape Seed Extract both operate primarily thru anti-oxidant mechanisms. Oxidative stress is known to be major factor in fibrotic diseases as a class. Grape Seed Extract (often referred to as OPCs) and Pine Bark Extract (referred to as Pycnogenol) are broad spectrum anti-oxidants that quench both nitrogen and oxygen free radicals. It is these free radicals that interfere with normal Nitric Oxide Synthesis and thus promote fibrosis. Broad Spectrum Vitamin E is important mainly because its major components work together towards the same end. d-Alpha-Tocopherol is effective against Oxygen Free Radicals but NOT nitrogen free radicals. d-Gamma-Tocopherol, on the other hand, is effective against Nitrogen Free Radicals, but not Oxygen Free Radicals. So the two work together as a team. The best place I have found as a supplier is iherb.com. I prefer the NOW brand for Vitamin E since it seems to be of fairly good quality and is very affordable as long as you don't move up to their super premium product (which I haven't done). As for OPC/Pycnogenol, the best on the market is Flavay which costs a kings ransom, but is produced by the original vendor and is no doubt first class in quality. I am currently using something that I can afford long term which is Resveratrol + from Country Life via iherb.com. It is affordable and combines the anti-oxidant power of diverse OPCs, Pycnogenol and Resveratrol all in one package.
- George
I have tried so many different forms of Arginine, I've got a shoe box full of nearly full bottles. Vitamin E has been the supplement most useful to me, but Arginine has been something of an enigma. Supposedly it should be a good thing, but my results have be extremely mixed. Sometimes it seems to make things better and other times it really seems to make things worse. I see it especially with my BP. Initially it seems to take my BP down, but then when I cut back on it, my BP goes down again as if the Arginine was actually making it higher instead of lower. It is just such a fickle substance. I know it has been shown to work well with Pentox (seemingly), but for those of us who are not on Pentox, or at least in my case, it is really turning out to be a mixed bag. I know I am getting milage out of the HGW and Maca, but for now I am radically cutting back on the Arginine and only using a very limited amount of VasoFlow Arginine Complex. I am hoping that that will help me move forward from here. Anyone else noticed weird stuff with Arginine?
- George
I would echo what George says. Arginine has had a mixed bag of results for me. I could swear that it was paking me worse at one point. I therefore went off of it and a few other things that I was unsure of.
Now, I have started back up on Vasoflow, since I believe that the L-Norvaline is important to prevent the formation of proline and collagen that is the fate of arginine when you have too much arginase (arginase is the enzyme that catalyzes arginine to proline, and norvaline blocks it). Thus, I THINK that the presence of norvaline is going to promote NO-synthase pathways (good!) and not arginase pathways (bad!). So far, I have not seen "bad", but I have not yet seen "good" either... so I am keeping tabs. After settling in on the Vasoflow, I have inched up on my HGW (and it comes packaged with MACA), and have restarted my ALC and PLC. Again, so far so good. My erection quality is good enough to not really want to use or need viagra or cialis, so using that metric, this regimen seems to be stimulating my NO pathways - which should be good for my Peyronies...
So when the hell do I have time left over to exercise!? For that is going to be clearly a component of my improvement. But again - this is not science. I developed Peyronies Disease when IW was about 21 and extremely fit, and years of fitness did not prevent it from progressing, albeit slowly. Interestingly, in the last 5 years my fitness has declined more than ever and that is when it has progressed faster than ever. So I am going to work on it, since that is a good and natural way to enhance NO pathways.
Tim
ps - to rcrj - I have not heard anything about length and girth - only about theories regarding recovery from Peyronies Disease based on anti-oxidant stress reduction.
Is there anywhere where one can buy just l norvaline by itself? Is there any special brand one should look for? I've been sticking with the pentox, my peyronies seems to have not gotten worse at least. I'm definately going to stick with the pentox religiously, but i'm up in the air on what to do with continuing to take the l arginine, or take l norvaline instead or maybe a vasoflow mix, I still can't afford real viagra. Since the original study done by Dr. Lue was done using just pentox, I wonder why l arginine got all this hype from Dr. Levine anyway? Perhaps we are over analyzing this and outthinking ourselves with the l arginine, or maybe not.
Tim, I echo your being in shape and watching your peyronies worsen, I used to be a cross country runner and in top notch shape, my disease however didn't seem to get as worse back than. Now that I've put on some stomach fat and was drinking in college my disease got worse, mainly with the shrinking and hardening of the plaque. I have now quit drinking alcohol totally, but it is way to cold out to run so I try to do situps. Interestingly enough, reducing stomach fat can raise testosterone by reducing androgen levels.
ComeBackid
I have been picking my pentox up at walgreens...it is only 10 dollars with my insurance and a bottle last about six weeks, this is my last bottle and after four months I will go back to the VED..... I was taking the more expensive sports arginine complexs before, but when started pentox just took the pentox with the ciliais and vit E..... I bought full spectrum e at walgreens also and they had L-arginine from nature bounty in a male enhancement bottle..... I had saw this before and stayed away from it, just embrassed to buy it in this label I guess:)... it has a man's chest/stomach on the bottle, I thought this was strange marketing....anyway I bought a bottle, it says L-arginine as arginine hydrochloride and comes in 1000mg and isn't too expensive.... I use it, took 2000 mg and got good blow flow, as good a response as the more expensive sports complexs I was using...... it can be taken on a empty stomach also.... I like arginine but do like to cycle off of it every six weeks for two weeks..... this hydrochloride, is this a delivery system? It really seems to work, and like I said, it is cheap and easy to take...
It is very important to understand the huge complexity of fibrosis and the environments that foster it. Recently, I have been exploring research into bacteria and their effect on the human body. The normal human gut is home to upwards of 400 different species of bacteria. Each have their own preference as to food sources and each has their own unique array of healthy and not so healthy substances that they secrete. Many are essential for human life since they break down foods that the body itself would not be able to process. Others are potentially pathogenic and can subject the body to some pretty nasty toxins. This bacterial population is arranged in a pyramid with a few species at the top in the stomach (and even the mouth) and a growing number of species as one heads south toward the outlet. One problem can occur with the ingestion of too much of the wrong kinds of food (particularly sugars), the wrong supplements or even poorly formulated prescription medications. Normally, as food moves down the digestive tract, the sugars are processed and absorbed by the body. But if something goes wrong with this process, these sugars pass through to the colon where they feed an already teeming population of diverse microbes that then grow out of control from the excess available food (Splenda is suspected of creating a problem in this regard, since the body can't process it, but certain bacteria can). This toxic population then damages the colon, secretes toxins into the body, AND moves up into the small intestine, causing more damage and further reducing the body's ability to process sugar, adding to the endless loop, and also drives out the beneficial flora that normally inhabits the small intestine. And there are suspicions that this process can drive fibrosis as well. So the whole complexity of what we are dealing with becomes pretty mind boggling. Unless we can get a handle on ALL of these issues, at least to some degree, the battle becomes futile. Incidentally, beer is famous for initiating this process. It is a process where the colon becomes taken over by either fermentation (too much sugars) or purification (too much protein).
As for L-Norvaline, it is really difficult to come by. Unlike many of the other amino acids which are naturally occuring, L-Norvaline is an 'engineered' amino acid. It is derived from L-Valine, a natural form. There are a pretty large number of amino acids, I am not sure of the exact number, but whatever it is, it is constantly growing as new derivatives are produced. L-Norvaline is only available in bulk powder as far as I am aware and is pretty much exclusively used in proprietary formulas.
As for whether one gets a 'response' from Arginine in any of its available forms, I am not even sure that that tells the whole story. One may get a vascular response, but not a local response in the vicinity of the plaque. Thus, while the vascular system itself may be infused with Nitric Oxide (which is a good thing), the area of the plaque(s) in question might remain Nitric Oxide starved, or even worse, the Arginine that gets to that area may simply become that much more raw material for the plaque(s), due to the intervention of Arginase. I am really suspicious of that happening in my case, as there are times when I reduce my Arginine input and my plaque(s) actually seem to retreat and other times when I increase it and they seem to go in the reverse direction. So at this time, I am really trying to moderate my Arginine input. It really takes a lot of time and intuitive introspection to try to figure some of these things out and, once again, the underlying processes are so complex that it is easy to take something that, in theory, should work, and end up getting wacked by it instead.
Well, all the best to all of you, I so much enjoy reading and learning from all of your posts. Each of you contributes valuable insights and as we are able to pool these together, we will draw ever closer to a solution.
- George
I am wondering whether side effects with Pentox have been an issue with anyone, I have read about insomnia and becoming jittery. I am susceptible to insomnia when taking foreign substances, even Potaba caused this when it was "prescribed" after my injury in 2003, but I didn't stick with it long. Also, does it take a nationally-renowed specialist to get the Pentox Rx? The local uro with the Potaba didn't seem to know much and gave me the brush-off at the time, and I've understood this to be a common occurrence with the local yocals, if not touting Potaba than Vitamin E and no interest in a follow-up appt., just sort of walk away from you after the exam. I hate seeing doctors and don't know how up for the trial and error process of finding a knowledgable/co-operative one I am, or the insomnia.
RCRJ,
I've had absolutely no side effects other than some jitteryness in my legs and feet in the beginning when I first started taking the medication. This lasted for a handfull of weeks and then went away. I had no insomnia that I noticed or any other side effects, thats why I don't mind continuing on the pentox. I haven't even had any upset stomachs yet, but always make sure to take my pentox after a meal or light snack. I'd say go for it man, the scientific research that points to some efficacy outweights any side effect, and if you do get a side effect you don't like, you can quit it anyway. The drug is cheap, and my doctor told me its very safe. Make sure to get the generic brand.
ComeBackid
rcrj, where do you live? The Pentox guru these days is Dr. Lue at UCSF Medical Center in San Francisco. I think if you look over the Urologists thread on this forum you will find links that will lead you to him and to his research data. When you talk to your local doc you need to be prepared with some solid research data and probably a telephone number for Dr. Lue's office so he can get up to speed. You shouldn't need a nationally known specialist, just a doc who is cooperative in these matters, but you are going to have to show him or her some convincing data in the form of abstracts.
- George
I'm moving to Colorado next month, and may wait until I get there and see Dr. Brant, the associate of Dr. Lue. This will give me a chance to test out L-arginine with the full spectrum Vitamin E I've been taking, plus I recently got a VED. I'm not up for the battle with an ordinary local uro, I haven't had good experiences with doctors. I'm just concerned with the Pentox that I'll have jitters or insomnia, I'm susceptible since caffeine gives me jitters and most drugs give me insomnia.
Robert
Quote from: Hawk on February 05, 2007, 04:46:13 PM
Clearly your chambers cannot block and unblock with your choice of drugs. I you now observe no lasting changes in your curve, then it is not a structural change. That only leaves the degree of erection from one drug vs another.
really i feel that is not a question of degree, the swelling that trazodone gave me was just way different to the swellings i have on the way to erections using ED-drugs.
MMM,
All I can tell you is that if your chambers are filled with liquid, whether arterial blood or saline solution - whether the solution gets to your chambers by infusion through a needle or through arteries - whether the arteries are dilated by oral drugs, injectable ED drugs, whether it is pulled in through VED vacuum, or a naturally induced erection - the chambers are either filled or not filled. You CANNOT fill one chamber regardless of the source of the erection. The pressure equalizes in all chambers because they are actually only connected compartments of a single chamber. The source of the fluid or the type of fluid has nothing to do with it, and is not a variable in degree of curve.
Only the amount of fluid can exist as a variable.
You have to be careful with pentox if you are doing weights or a lot of standing or walking. With pentox your legs are always burning and its difficult to distinguish an inflamed knee versus just the medication side effects. I almost got tendonitis in a knee because I assumed the burning was from the medication although I should have progressed slower with the weights. But the point is that taking medication disturbs the natural feeling in your body that you are accustomed to, so you have to mentally think about things like exercise, whereas before, it just came naturally.
Supplements and meds are not supposed to make you feel bad or hurt. If something is making you hurt, check it out.
In weight training (body building) you learn to "live for the burn". I remember going to the beach after going to the gym and working the legs. Sometimes I couldn't walk in the sand. Those were the days :).
Okay time for a quick progress report since I have been taking the Pentox combo for roughly three months. First of all I switched to a superior brand of Vitamin E and picked up the San Vasoflow, L Arginine brand. Just so its clear what exactly I have been taking.
The initial results are heartening.
I had three areas of plaque. The smallest one initially the size of a pea, has shrunk to the size of a pin head. The other two mauch larger plaques are unchanged at this time. Furthermore something I thought was scar tissue at the initial point of injury about the size of a couple of pin heads but flat. I now know to have been a small plaque and it has vanished entirely.
I am very pleased and will be continuing the course of treatment. I know that these results may be unusually good, but my anecdotal evidence is that the Pentox combo is helpful. If only this had been available three years ago when it all started, would it have prevented the terrible progression and shrinkage I wonder?
----PJ
PJ,
So you started this regimen 3 months ago, and you started after three years of Peyronies Disease? Do you have any ED along with your Peyronies Disease? If so, has this improved? When did your disease stabilize? From the time of stabilization, did you experience any positive changes?
ED is not a significant problem for me. Things aren't quite as rock solid as they were before the Peyronies, but I don't suffer from any real ED problems. I don't believe my disease ever stabilized. Since the appearance of the first plaque about an inch and a half from the tip of the penis, the plaques have steadily moved down the shaft towards the base leaving what I understand to be scar tissue in its wake. At the current moment the plaques are about an inch from the base of the penis having 'traveled' from the starting point of the injury. The space between that is deformed and shrunken with the typical hourglass complaint.
I have no reason to doubt that if left untreated the disease would have progressed the rest of the way.
There are no positive changes if by that we mean an improvement in deformity or a regain in lost size. Frankly I don't expect any such thing. I would extremely pleased if this treatment just stopped the progression of the plaques. There is about 2 1/2 to 3 inches left unshrunken and I really can't afford to lose any more length. Plus I worry that further progression might mean bending and twisting which I have so far (mostly) escaped. So my great hope is a cessation of progression not any improvement of damage done.
I'm in the same boat...predominantly have a septal scar that reaches start to finish with a slight bend left at the base and then even further underneath another bend right that cancels the other. There is always slight pain for the past 1.5 years but I have to say it has improved somewhat, very slowly. Very minimal ED which is as far as I can tell psychological anticipating pain. I agree with you completely...if I knew it would just halt now and not progress I couldn't complain. But the uncertainty is distressing. I've been using Pentox, arginine and acetyl-l-carnitine as well as ginko with many variations inbetween. I also supplement Vitamin D. The Pentox has been for the past 7 months. Guess I'll just keep on keepin' on!
Just had my follow up with my Uro (Culley Carson, UNC Chapel Hill) today, after 4.5 months on Pentox (400mg 2x/day). After checking my unit out thoroughly he seemed optimistic that the little ball or marble of plaque (the source of the original "dent" where it all began) is gone or at least thinned out, plus my pain is gone. My curve also has not worsened for 1.5 months or so. He said just to continue with what I've been doing and see him in a few more months.
I asked him about the dosage of 2 pills/day vs. 3/day, and he said it was to avoid the "flushing" side effect, which turns some people, in his words, "red as a beet." Plus, he said, he's seen good results with many other of his patients with only 2 pills/day, so he sees no need for a greater dosage and risk of side effects. Sounded good to me, so I didn't press the issue further. But in retrospect... define "good"?
I didn't totally understand his optimism, I guess cuz I'm the one with the bent dick that hasn't shown any improvement yet. But he was very positive about my progress, and he's the one that examined me, so he should know, right?
Anyway, I walked back to my car with a renewed prescription for Pentox.
Myrddin,
If he seems to think you have improvement that is good, I would stick with pentox since it is pretty cheap. I was thinking the other night about why I'm not seeing any positive results from pentox, it still is early for me at 8 weeks, however I wonder if the generic pentox is effective? My pentox has a purple color with MYLAN on one side and 357 on the other side (imprinted on the pill). Does anyone else have pentox that appears this way? Perhaps the generic pentox will not be effective? What do you guys think?
ComeBackid
ComeBackid Myrddin said he hasn't shown any improvement. His doctor said that the plaque seem to be gone or better, but his curve ect. is the same....
Once ones plaque is gone, the damage is still done to the tunica and the lost of size or elasticity won't come back, other that maybe with a mechanical approach like traction or VED...
I have been on pentox for almost four months and have one more month or so of the bottle left, when this is gone I will stop taking the pentox..... I haven't notice any benefit from it myself, side effects have not been good for me either, headaches upset stomach, I can only do two a day and if taken far apart with plenty of food the side effects aren't very bad..... I haven't miss a dose in almost four months along with Vit E(full spectrum) and cilias and some arginine.....
I will do ginkgo after this with arginine and some opc..... my peyronies is now 10 months old, so I wanted to do the pentox for four to five months in the early stages... my plaque hasn't change really either.... I just can't see staying on this for a year or more, not for me.... Danny Ocean's doctor who works with Lue had him get off it after six months, said it was going to do what it could do in that time.... and once again, it can't repair a damaged tunica....I wonder if aa4500 can either?
Rico
Rico,
How do we know that one can not recover size or elasticity once the plaque is gone from a treatment? If you eliminate the plaque your tissue will have to be more flexible than before, I don't buy this argument that the damage is irreversible. Our cells in our body are constantly replacing themselves and its very possible to eliminate hte plaque and have cells that are more flexible again.
As for the pentox, 4 months is not long enough to see any improvement, I think it has been repeated many times that one should give the protocol at LEAST 6 months, if not a year, in order to see any improvement.
ComeBackid
ComeBackid,
I do believe if one removes the plaque they can reduce the bend, but won't gain lost size back, this is what I have read.... I have read that some have gain some size back from injections and ved or traction.... I know when I have inflammation a area can become stiffer, so maybe if pentox helps with inflammation it will help somewhat with like I said the bend also, but will it replace your tunica with new cells that resemble the normal ones, wishful thinking at best I would think..... if someone feels that they should stay on pentox for more than six months, so be it.... it probally can't hurt them, I just don't see the point of it for me, and like I said, I don't like the side effects.... I also would like to see one report where the pentox has done anything to help regain size or hour glass(hinging).... reduce some plaque and slight bending from decreasing inflammation is good, and maybe for some it made a difference..... once again, no one on this board has posted his deformity has improved....I know my hasn't....
Realistically. Lost size regained? I do not have any such expectation. (Excepting what has been posted here about VED and so forth) But if the plaques reduce? I have seen evidence in my own case that this is possible. If there is a reduction in plaque that makes me hope for a cessation of progression. At my youthful age of 41, a lack of progression seems like a great hope. I have seen on this site that Peyronies tends to come in a series of progressive periods, my theory is that even if Pentox is not doing much else a reduction in some plaque size means that further progression is unlikely.
That to me is a great hope. It means that I have less fear of becoming non-functional. Its worth the occassionally upset stomach. Even if I am on Pentox for the next 20 years. Its listed side effects are pretty minimal long-term.
---PJ
I'm sort of perplexed about some of the things I'm reading in posts about pentox. I think a lot of this has been covered earlier, so if I repeat, please forgive me.
Myrddin's urologist prescribed 2 (as opposed to 3) 400mg tablets per day to avoid flushing, yet I cannot find flushing as a side effect of pentox. Flushing did appear in a clinical study comparing the commercially available tablet (what we all take) versus a capsule which is not commercially available; the flushing side effect appeared in 2.3 percent of patients taking the capsule, which again, is not even commercially available.
http://www.rxlist.com/cgi/generic/pentox_ad.htm
Rico's headaches and upset stomach are listed as side effects. I have had no side effects whatsoever, beyond a burning in my stomach on two occasions when I did not take pentox with food (which is clearly labelled as what you're supposed to do.)
ComeBackid, there is no evidence that generic pentox is any different from Trental. The tablet I take is exactly the same as the one you describe. There was an earlier post covering Trental vs. generic, but I'm too lazy to go look for it.
Also, it could take years to know whether pentox is helpful for Peyronie's. I think Tim had said two years in an earlier post. It seems to me that actual side effects from pentox would be a good reason to discontinue the medication; otherwise, I plan to stay the course for the duration.
Quote from: Rico on February 12, 2007, 05:16:01 PM
ComeBackid,
I do believe if one removes the plaque they can reduce the bend, but won't gain lost size back, this is what I have read.... I have read that some have gain some size back from injections and ved or traction.... I know when I have inflammation a area can become stiffer, so maybe if pentox helps with inflammation it will help somewhat with like I said the bend also, but will it replace your tunica with new cells that resemble the normal ones, wishful thinking at best I would think..... if someone feels that they should stay on pentox for more than six months, so be it.... it probally can't hurt them, I just don't see the point of it for me, and like I said, I don't like the side effects.... I also would like to see one report where the pentox has done anything to help regain size or hour glass(hinging).... reduce some plaque and slight bending from decreasing inflammation is good, and maybe for some it made a difference..... once again, no one on this board has posted his deformity has improved....I know my hasn't....
Rico,
I agree with ComeBackid, you can regain lost size. I have been using the ved, thacker formula and pav cocktail(few months) and I have regained almost all of my length, but I still am waiting to regain my lost width.
I feel that some kind of external stetching is necessary and benficial and the things that I am using work well in combination. Do not give up!!
Cheers.
I do believe that dmso will soften plaque and ved can remold it.... I don't think the pentox had anything to do with it..... maybe the pav cocktail has help with inflammation? I was using the thacker before and ved and was getting some results.... I went on the pav cocktail and got side effects and also some red spots on my unit so I stop the ved and continue with the pav cocktail.... I have one month supply left with the pentox and then will go back to ved and some thacker also with ginkgo... like I said, I had my best results when I was using that combo.... I'm not saying that pentox is bad, I just don't think it does that much, I also think we are all in a different boat also somewhat, hour glass vs bend ect.... I wish I would of taken pentox the first week I notice my peyronies also, but waited six months, it is like Tim says, after the barn door is open.... if you go to Levine he is going to suggest shots(verapamil) and traction or VED.... I believe that dmso works along this way Soxfan, softening the plaque to be molded by the VED and this is how you got your size back.... now having good blow flow during this isn't a bad thing and if you don't get too thin of blood and the VED is working with it and you don't have side effects, then more power to you... for some reason pentox and me haven't been a good match and in one month I will be glad to be off of it and back to a better diet:)... I can only eat very bland foods on this...
Rico
Quote from: Rico on February 13, 2007, 11:46:33 AM... for some reason pentox and me haven't been a good match and in one month I will be glad to be off of it and back to a better diet:)... I can only eat very bland foods on this...
Rico
Rico, sorry to hear you're giving up on Pentox after only 4 months. I've been discouraged with lack of progress with Pentox too, but kept reminding myself that most of the medical studies on its effectiveness (with Peyronies, as well as other fibrotic conditions) showed progress somewhere between 6 months to 2 years. I'd hate to give up on it just before it really started showing progress, just for the sake of being able to eat spicy buffalo wings again!
Like you, I thought pentox wasn't working at all (no visible improvment) until a couple days ago when my Uro "felt me up" and remarked positively on the reduction of plaque. You never know what's really going on inside even when nothing visible is happening
Anyway I don't want to seem like I'm selling you on Pentox. I just would hate for you to give up so soon on what may -- in the long term -- produce the best improvement for you.
My suggestion is at the very least, get your suspicions confirmed by your Uro. If he agrees its been a long enough time to see progress and says, "yeah, it looks like pentox has no positive effect on you." Then at least you have a more objective, professional opinion to support your conclusions. (and to blame if things get worse, heh)
Quote from: Rico on February 12, 2007, 04:04:21 PM
Once ones plaque is gone, the damage is still done to the tunica and the lost of size or elasticity won't come back, other that maybe with a mechanical approach like traction or VED...
I question whether this statement is true but I have no evidence either way. Does accumulation of plaque damage the tunica? In what I picture in my head, once the plaque is gone, the tunica should be free to expand normally again (like removing the piece of tape from the balloon).
Isn't this what happens during a Peyronie's surgery? The doc removes the plaque, allowing the penis to straighten. I'm not sure they do anything to stretch out or repair damaged tunica. But my understanding here is very simplistic -- and I don't have the stomach to watch those videos of Peyronie's surgery. Must be the pentox :)
Can someone more familiar with surgery or plaque removal comment on this? I post this in "Oral treatments" because it's really a fundamental question regarding effectiveness of Oral medications. Can the most perfect medicine in the world result in penis straightening, if the theory of Tunica Damage is true?
Several thoughts...
First off, it is important to think of the placque as transformed tissue, instead of thinking of it as a scab or piece of tape on a balloon. So the placque is not something that can be scraped off and reveal normal tissue underneath. Rather, the Tunica albuginea (TA) is transformed from a fascinating layered sheath into a matted piece of scar tissue. Thus, in some surgeries, the the placque is removed and the vacancy is filled with a graft. So far the best grafts have come from the saphenous vein and using the porcine gut tissue that can be sued for so many grafting purposes. The so-so results of grafting surgeries comes from several problems. First, the grafts can scar down, resulting in another dent or bend (IOW, the problem may be different in a microscopic way, but what your dick does looks the same). Second, the graft does not function like normal TA, and thus erections may suffer in quality.
My reading of the literature suggests that a surgery that removes such scar and replaces it with a graft (of any sort) is likely to be better in outcome is the recovery includes use of the VED and anti-niflammatory drugs of supplements (to reduce scarring). The best hope lies in the use of the tissue that places a scaffolding down that can then allow the TA to sort of "regenerate" into normal TA over the graft (this is the exciting work of Anthony Ayala (sp?)).
If the scar/placque is small enough to allow a small graft, it is less likely to result in a bad outcome, but then again, such a lesion is also ideal for the Nesbit, because the tuck used to treat such a smaller lesion is less likely lead to much shortening. So those of us with dents, hourglass deformities or more severe lesions don't really have great surgical options - yet.
As for remodeling, it is important to remember that anything can theoretically return to normal, but in reality is is hard. Calcifications can resorb and disappear and so on. Rico is NOT correct is assuming that the TA can never recover it's elasticity - but we are really dealing with new areas of medicine and science now.
Rather than saying it is impossible, I think more in terms of reducing progression and maximizing chances of healing. We know that "permanent" problems can return to a more normal anatomy, but to do so, we need to change the conditions that led to the problem in the first place. Since we still do not fundamentally understand WHY any of us do this, to come up with a prevention or healing strategy is speculative at best.
I think that Rico and ComeBackid are considering bailing out too fast on Pentox out of frustration with slow progress. BUt if it were me, I would also consider options like surgery if such options were more likely to lead to the outcome I want (a straight functioning penis). My main problem with any surgery is that I am not "stable", so it is likely that a newly straightened penis would, for me, develop new lesions. So I am focusing on strategies that stop any more progression. If I can do that well enough, and even reverse things - I will be OK with where I am. If the erectile function goes, then I will consider an implant. But if I do that, I will consider going to the some whacked out foriegn surgeon willing to put in an oversized implant and make me ready for porn films! I figurethat if I then shrink a bit, I will return to more normal proportions, and I'll still be ahead of the game :-\
Tim
Tim you say you are not stable, pentox is suppose to be for people who are not stable, why don't you use pentox?
I don't feel I'm bailing out on pentox after four months plus on it..... I just don't feel that staying on it for years is going to change my hour glass.... I was just hoping to stop the inflammation in the first year of peyronies, which I'm coming up to.....
I agree with Hawk, just because the plaque is reduced this means nothing and over time this is the course anyway in most cases but the damaged done to the tunica is the same,which is the real problem.... does pentox change the tunica back to normal? Tim your the first person that has said this is possible.. I thought the only change can be in remolding with a ved or traction at this point... I would like to see a report that the tunica can go back to normal from supplements or pentox....
Rico
Rico,
I am not sure we know for sure that Pentox works. If it does, it does not remold the tunica. It sets up conditions in which remolding can occur by stopping the replacement of our natural tunica cells with fibroid cells. In over simplified terms, we all get a new dick every several years. Cells do not live forever. If the process is stopped, as cell replacement takes its natural course the problem tunica cells die and are replaced by real tunica cells. That is the ONLY WAY I know of that an oral drug could straighten a bent penis and that is a long-term process. A drug cannot transform one kind of cell into another. It can only stop the process and the body has to do the transforming as I understand the process.
One could say that if your Peyronies Disease was cured today, (meaning the Peyronies Disease process was stopped dead in its tracks and normal cell replacement resumed), it would take many many months for you to experience recovery.
Hawk I have a scar on my hand, been there for twenty years, it hasn't changed.... I don't believe scar tissue is replaced with normal tissue..this is the problem with scar tissue, it is forever.... I don't think my unit is like a snakes skin and is replaced, I think one can stop the scar tissue or inflammation, which usually takes place in most scars within 12 to 24 months and if peyronies is caught early, things like pentox or the pav formula might help in slowing it down.....
Are you saying peyronies scar tissue is different than saying a scar like when you get a cut? That once this scar tissue of peyronies stops it course it is replace with natural cells... never heard this or read this, every doctor I have read other than ones who use traction or VED say that the size or bend will never go back to normal...
I know some people(which is a small number) heal normal, maybe these are the ones you are talking about.... has anyone here ever had a scar disappear over time?
Rico
Rico,
I am saying you are simple incorrect in your understanding of cell death and replacement. Your skin (or scar) cells do not live for 80 years, nor do any other cells. You do not have one cell in your entire skeleton that was there 20 years ago. Normally cells are replaced by like kind unless something alters the process. Cancer can change the dna of a cell. Those new cancer cells will live much longer than normal and over-run normal cells that perform vital functions for our body to live.
Conditions (not fully understood) can cause normal tunica cells to be replaced by fibroid collagen that does not have elastic characteristics. The challenge is to stop that process and allow the normal cell replacement that goes on to rebuild normal tunica. As we all know, this is much more difficult than typing a few lines in a post.
Concerning the scar tissue in your hand, those cells are being replaced and close observation will show that most scars very slowly fade in time. If not, it is because the old scar cells are replaced with new ones. The scar cells do not live as long as you do.
The penis you have now, if not used for a few years is a brand new virgin penis. Now there is a line to entice the next lady friend to be the very first. ;)
I would suggest that the huge overall risk to those of us with Peyronies is the seductive impulse to oversimplify the problem at hand. Thankfully, we now live in a time like no other in history when the secrets of the human body of becoming known like no time before in human history. In the case of Peyronies, we now know that SOMETHING caused the process to begin in the first place. Every part of the human anatomy, including the penis, is subject to trauma at one time or another and usually, if not in every case, repeatedly. The normal process is that those wounds heal and we end up just like new again. So why doesn't Peyronies heal? I would suggest that if we can know why the process started in the first place, we will be well on our way to knowing why it is not healing now. In other words there is something subtle going on with our physiology that caused it to happen and that something subtle is STILL going on and causing it to persist. Until we come to that point, we will make little progress in our struggle to achieve healing.
One thing that is being revealed by recent research is the tremendous effect the over huge number of microbes that inhabit our body have on our health. A very subtle toxic mix of bacteria in your intestinal tract can cause you to be malnourished. A slightly different culture down there can cause you to be totally obese no matter how hard or in what manner you try to diet and exercise. Which leads me to suggest that a subtlety toxic bacterial culture in the gastro tract could be contributing to a subtle change in blood chemistry that makes one prone to scarring and resistant to healing. That said, I would further suggest that it will take a combined symphony of diet, exercise, supplements, drugs, etc. PLUS a lot of trial and error and patience to achieve results. Specifically, discovering what foods are feeding the offending bacteria and slotting out those foods is the potential challenge to making significant progress aided by everything else from supplements to VEDs.
My one big point here is that this problem is much greater than we imagine BUT the body is indeed capable of achieving remolding, in fact it does it all the time. It is only a matter of discovering the keyhole, and we are closer to that than ever before and I don't intend to give up. In any case the answers will come through legitimate research, not through our random speculations, and we need to stay closely tuned to that ongoing research. So far I have gotten victory over a number of things my doctor had given up on, and I am now seeing my BP go down nicely and naturally. I don't see Peyronies any differently. With persistence and determination it can be beaten.
My apologies to Hawk for this off topic rant. Feel free to move it to a more appropriate place once its had a few days of exposure.
Rico,
I do feel like your bailing out, four months is not adquate time to see if pentox will work. However, if you have side effects you can't stand then I'd get off the medication, but don't necessarily conclude it does not work. Hawk is right, it takes time for the cells to replace the old ones, its a very slow process. It reminds me of one of my favorite WWII films- Force 10 from Navarone. In the end they blow the dam but nothing happens, its supposed to cave in. Slowlyl but surely it caves in, if pentox is to work I think of it like that, its a process and will take time on pentox, even up to a year or longer.
ComeBackid
An important point. If Pentox is taken only with the concept of simply preventing progression, one only has to read the forum to get the message loud and clear that progression is not a 12 - 18 month issue. Tim, Barry, Larry, and literally scores more testify to that.
Hawk,
It is hard to say about peyronies and progression, most doctors say that in 12 to 18 months the plaque becomes stable, like most scar tissue, and most scar tissue might even shrink a little after this initial inflammation phase... now maybe if someone shuts down the inflammation then the out put of scar tissue will be more limited. I know Danny Ocean's doctor who works with Lue said that after six months on pentox, the pentox has done as much as it was going to do... right or wrong, it is something to ponder.... the jury is still out...I just don't get excited about plaque getting smaller....it is the deformity that bothers me and I find it hard to believe at this time that staying on pentox for years is going to cure this..... for those who stay on it for years, I hope I'm wrong...
Quote from: Rico on February 14, 2007, 07:41:07 PM
Hawk,
It is hard to say about peyronies and progression, most doctors say that in 12 to 18 months the plaque becomes stable,
Rico, most doctors have not one clue about Peyronies Disease so it does not matter what they say. Ask Tim how long it has taken his Peyronies Disease to become stable. Ask Barry or Larry (15 years and still active). Ask 100 other men on here. I am not saying someone cannot become stable in twelve months and never be active again but there is just about as much chance that they will be active for 12 years.
Rico,
Define stable? My peyronies has been slowly worsening over the past 8 years now. These doctors don't know, even Dr. Mulhall had no answers for me. We the sufferers know best. Just about all the people on here that I've talked to have stated to me they continue to lose size and have an increase in the curve. To me this means peyronies never really stabilizies permanently, although it could, it seems like in most cases it does not. Now it may stabilize for a period of time and then get worse, but this is not stabilization to me, stable to me means it gets so bad, and then will not get any worse.
Hawk and ComeBackid,
I'm not sure how long it takes to become stable, I do believe we are all different and some peoples immune system is more out of whack than others...
I know on the other forums and on here I have read where after a year or two the peyonies pain and discomfort went away and the curve hadn't change one way or another...
Each of us cope with stress and illness different also... and sometimes life gets in the way and it can play a toll on ones over all health and effect healing to conditions they have.
We got on this topic because we are talking about how long one should stay on pentox... some mention that four months is not long enough to be on it... I have to keep coming back to Danny Ocean doctor who works with Lue who said after he was on it for six months that it has done all it can do. I took my pentox last night and this morning.... I wake up with good erections, blood flow is there... my urologist only prescribe four months worth... I will talk to him or go in again since it will be four months and see what he thinks, I talked him into giving me it... I also am looking more into pentox and trying to get a better feel for it for long term use... when I first started the pav cocktail I got such strong erections they woke me up at night and the head of my unit was huge... I have had some redness on the head, looks like a light rash and some slight discomfort near the head also during erections, but this part of my unit looks normal... I think it is from the strong erections from the cilias, I don't get them as strong, and they don't wake me up.... this also kept me from using the VED.... so I'm trying to weigh out stopping the cialis and pentox and doing ginkgo and ved instead... still would get blood flow and I can work on the remolding..... I wish I could do them all together, but that doesn't seem to work for me....
Rico
i've been on pentox for 7 days, 2 pills daily, apart from pentox i'm taking vitE 400 also twice a day, plus cialis when i'm with my girl, which is about twice a week. i can not say it 100% sure if its the pentox, but in combination with the cialis i have yesterday had the fullest erection in months. plus, i'm experiencing a weird but good feeling tickling in the bump between my testicles and my anus in the past days. i have to add thatED is not a result of Peyronies Disease, but ED is the result of an accident and trauma, Peyronies Disease came addionally after a few years.
ok so this post doesn't contain a lot of useful information, but i will keep you updated
Meanmrmustard
You post is important, we all need to report the details of what we notice on these treatment protocols, thanks for your post! I like you noticed really super full erections after starting pentox, that made my penis bigger in size, cause it filled up so well. Interesting you report that as well. Do you also notice an increase in flaccid size as well?
ComeBackid
I think you are getting the fuller erections from the cialis... pentox take several weeks to work in ones system....plus the cialis will stay in your system for several days, this is why they call it the weekend drug.... I found that when I first did cialis also that I got increase erections, or just harder in the beginning....
The most immediate effect of Pentox for me too was super full erections like meanmrmustard and ComeBackid described. I noticed the effect soon after taking it. My wife noticed too. Definitely a pentox thing, since I was never on cialis or viagra.
Enjoy it.
I noticed the super full erections the day after starting it, I also was on nothing else. My flaccid penis was also super full and hung bigger as well, it was def the pentox thing. I think it was the blood thinning effect of the pentox, not sure though.
ComeBackid
I don't doubt your observations or that it was likely the pentox, but I don't see how it could possibly affect your blood chemistry that fast.
For those of you receiving Viagra or Cialis specifically as part of the pentox, l-arginine and viagra regimen, how much viagra or cialis do you take a day? Do you take it once or twice a day? Has anyone experienced any side effects while on the daily dose?
I don't have an answer for your specific question since I am not yet on the protocol. But i have some thoughts about it based on my reading.
In measuring erectile function (for which there is a great deal more data than in Peyronies), the axiom is to use the lowest dose that works. Therefore, if you get a good erection with 25 mg of Viagra, then use that dose; if not the go up until you do. Moreover, when making choices about which drug to use, then go to drug B is drug A either does not work or causes unacceptable side effects for you.
Based on that paradigm, I find that low doses of Viagra work, and higher doses work better, but at a costs of headaches later. I prefer Cialis because it seems to work for a much longer peroid of time well enough, but without the side effects. I have no experience with Levitra.
For this program, things are a bit different. Here we do not have an obvious dose-response issue we can get ahold of as we can with erections (ahem). So how do I know what dose if "enough" if the result is to be realized down the road?
I would go in this model to a highest dose tolerated that does not cause side effects. While I would like perfect erections, "good enough" is OK, and I can then say that 10 mg of cialis will do that (and be cheaper). But if I can tolerate 20 mg of cialis quite well, why not go with the higher dose?
If I had to use viagra, I would go to 50 mg a day, and maybe divide it up (25 mg twice daly). With Cialis, I would go with 20 every other day. I would lower the dose or change meds if the side effects were intolerable. If I could handle 100 mg a day of viagra, I'd use that.
Tim
I have always read that one shouldn't take viagra more than once a day... even if you are breaking up the dose.... it says this in the instructions also on on web sites..... the protocol for the PAV cocktail is 400mg of pentox three times a day with food, one should start with twice a day, and if you can handle the dose go to three, 25mg of viagra a day or cilias 10mg every other day for the first month and then go to every three days.... arginine 1,000mg two to three times a day....
Rico,
I satred with the pentox at 400mg 3x per day but I got terrible headache. now I take it 2x per day and I am good. I also replace viagra with cialis and I tak 25mg every other day, with 2000mg of l-arginine.
Cheers.
Soxfan,
That seems like a good combination your taking, pretty much what I do, pentox 400 twice a day and cilias now twice a week at 10mg and about 2000mg of arginine... I was taking vit e but have stop for awhile and I didn't take the arginine for two months to give my body a rest on it, just started again on it, I haven't missed the pentox for almost four months now and cilias....
Rico
Soxfan I reread your post, they don't make cilias in 25mg and that would seem too much anyway, did you mean the opposite, which would make more sense, did you replace cilias with viagra?
Quote from: Rico on February 21, 2007, 03:09:08 PM
Soxfan I reread your post, they don't make cilias in 25mg and that would seem too much anyway, did you mean the opposite, which would make more sense, did you replace cilias with viagra?
Rico,
Sorry for the confusion, I now take cialis instead of viagra. I buy my cialis in capsule form from an undergorund source. I get 50 capsules at 25mg each for $45, so it's cheap and every other day is working well. :)
cheers.
Soxfan,
For starters you must mean they are 25mg Tadalafil not Cialis since Lilly does not make capsules or 25 mg Cialis in any other form. Cialis is a brand name.
What prevents a company from calling them 25mg and putting in 10mg along with yohimbe and or other substances, especially since they sell them at 93% less than the real product?
What if they are contaminated with other harmful substances?
Does it concern you that if they are actually putting what they claim in this pill that it represents an unsafe, unapproved, dosing level?
What would your recourse be if they were fraudulent or harmful?
Is this just total trust of a black market drug supplier to look after your health or have you had these pills checked by a competent lab?
Rico, Viagra is routinely given in divided doses for pulmonary hypertension.
Cialis does not come in capsule form or in 25 mg doses, so I would be pretty suspicious of that.
Tim
Hawk,
I know my source from my steroid using days and he simply caps the tadalafil powder.He runs a clean operation and all of his product is lab tested. :)
Cheers.
Gents
Just would like to post on my development. I experienced a hardening penis and shortening after attempting something called jelqing 3months ago. I finally only got a pentox perscription about 3 weeks ago. I have seen improvments since then...i.e better/softer flaccid hang + fuller erection. Before the pentox I had been taking 1/4 10mg cialis daily which did not have the same effect as its had since ive started the pentox. I will be gettin the arginine soon to add that to the mix. I know there had been some doubts to pudders reports on this matter but I am experiencing the same and keeping my faith up!!! :) I have developed a bizaar lump on my lower back though since taking pentox that I think is some kind of blood clot which I will be getting checked out. But that is the only side effect so far.
Hope you are all improving :)
Gibson
Hey Gibson,
Glad to hear of your improvements on pentox, yes you should get the lump on your back checked out. As I told you and others have stated, I noticed the increased flaccid hang, and fuller erections. I believe these effects are from the blood thinning effects that allow the blood to fill up in the penis better. Anyway just stick with the pentox for now, I'm approaching the 3 month mark now.
ComeBackid
It is hard to imagine Pentox causing a lump on your back. By all means, get it checked out.
Remember, there isn't an indication of cause and effect, just because two things happen in the same time frame.
I drank bloody marys and the Gators won. If I drink bloody marys during a game, the Gators can't lose. Sounds like a plan.
Liam
There is a new form of of L-Carnitine. I believe it is an ester of Propionyl L-carnitine bound to Glycine, an amino acid. The one source I have found so far is quite a bit more costly per gram than the propionyl L-carntine (PLCAR powder). The new product is called GPLG. In a PubMed report of 1992 from Kaohsiung Medical College in Taiwan, they note a decreased percentage of glycine (and alanine) in Peyronie's Disease (in tunica albuginea) which implies abnormal composition of collagen or presence of noncollagen protein. Has anyone on the forum been taking the PLCAR powder? Any side effects? Has anyone been taking L-Glycine supplements to treat peyronie's? Mark501
Quote from: mark501 on February 27, 2007, 11:18:32 AM
Has anyone on the forum been taking the PLCAR powder? Any side effects? Has anyone been taking L-Glycine supplements to treat peyronie's? Mark501
Back in December/January I took a bottle of GPLC capsules (500mg 2x/day) just to try it in place of ALC for a while. I only took it for about a month then ran out. Nothing dramatic happened, nothing worse or better, during that time. I decided to go back to ALC because I saw nothing to justify the premium price I'd pay if I took it long term. If I saw further studies showing the effectiveness of Glycine in Peyronie's, I'd try it again. The price isn't
that much more than ALC, and if it proves to be seriously effective, it would be worth it.
I first saw the effects of Peyronies about three years ago. I went to a urologist and he said the usual: no cure and try vitamin E. After much stress and frustration I sam no inprovement, only things getting worse. I decided to try some things on my own and did some research. I decided to try a combination of VariCare (contains Butcher's Broom, Horse Chestnut, and Gotu Kola) and Bromelain. I guess the thinking is that the VariCare helps circulation and the Brmelain helps to reduce the plaque. The dosing of the Bromelain is pretty high - I tried this for 30 to 45 days, took a break for a month or so and then tried another round of the same dosage. I started to notice immediate improvement, and the pain, indentations, and curvature continued to improve. I went about a year with no worsening or symptoms, until recently when I noticed some indications. I'm going to try the same round of VariCare and Bromelain and see what happens.
Is there anything new out there? Is there any truth to Pyrotabs? Does the pump help with strengthening or restoring lost length?
The best thing you can do is to scout around and review the past posts on this forum. But I will tell you straight up, in my experience full spectrum vitamin E helps, bromelain and horse chestnut should be helpful (but horse chestnut carries some risks, ginkgo is probably a bit safer), I don't know about butcher's broom or gotu kola off the top of my head. Pyrotabs are a rip off, don't go there. The pump (VED) is very legitimate and many are finding it helpful, you can learn more about it on this forum.
- George
:( Wonderful to find this group. I have heard a lot about a Dr. Lu in San Francisco. Does anyone have his contact information?
Thanks.
Ted
Has anyone had any experience with Pentoxifylline (or Trental)? See article attached.
I contacted Dr Lue recently and he said:
"We have 20 out of 85 that showed a reduction of calcium deposit and scar tissue after taking the medication for 6-12 months."
I also recently found this site, which looks encouraging: http://www.auxilium.com/pipeline_peyronies.html.
They seem to think our condition is related to Dupuytren's contracture - a condition that prevents you from opening your hand completely - a condition that my wife has!?!
Any comments?
Othello,
Thanks for posting. You will find whole sections here discussing both meds dating back over one year. There are some great insights here. Visit the website and see the read only section of the forum. Don't ever worry about posting old info,though. It is a good reminder for us and maybe someone new will see it and get help.
Liam
Othello,
Welcome!
I wanted to add to what Liam said and encourage you to go to the SEARCH button near the top left side of the screen. Type in the word you are interested in and put a check mark in front of Show results as Messages.
Our read only highlights of the topics are here: https://www.peyroniesforum.net/index.php/board,18.0.html
When you go there, it looks a bit like you are here on our main board but it is not for posting and has a condensed highlights that will bring you up to speed faster than reading all the posts here on the main board.
Our web site is at www.PeyroniesSociety.org
Since L-Norvaline seems to play a role in preventing an intake of L-Arginine from being converted to arginase,
I am interested in trying L-Norvaline in conjunction with my L-Arginine intake. I seem to recall it is somewhere between difficult and impossible to get L-Norvaline alone and that there is a product or two out their than include it with L-Arginine in a packaged formula. I thought that product was Vasoflow but the site I checked did not mention L-Norvaline in connection with Vasflow. Could anyone clear this up and give me a vendor with a good price?
Also this site on Vasoflow warns
QuoteConsult your healthcare professional before use if you are being treated for high blood pressure or erectile dysfunction.
We know how these warnings go, but can anyone deduce why the ED warning since arginine is a precursor nitric oxide and it helps ED?
http://customnutritionwarehouse.com/vasoflow-p-1224.html?osCsid=df52a71a54566d9d621b090fc1082e9e
Thanks
This excellent article link brought up in the "Causes" thread,
Quote from: roadblock on March 15, 2007, 09:20:55 PM
http://www.nature.com/ijir/journal/v14/n5/full/3900873a.html
recommends some routes of treatment, one of which seems easy to try since it uses supplements:
QuoteS-adenosyl-L-methionine (SAMe) to increase glutathione levels, and polyenolphosphatidyl-choline (PPC), to reduce lipid peroxydation, are in clinical trials for liver cirrhosis (Wu J, Zern MA. Hepatic stellate cells: a target for the treatment of liver fibrosis. J Gastroent 2000; 35: 665-672). Our work on the antifibrotic effects of NO suggest that this strategy may be complemented with the stimulation of NO synthesis to destroy ROS (iNOS induction or gene transfer, long-acting NO donors, L-arginine).
I've never heard of combining SAM-e and PPC as a treatment before, but but they are widely-available supplements, and according to this article, it may be helpful to add them to some of our NO-increasing treatments. Has anyone else here heard of using these supplements before, or tried them?
I include the entire "suggested therapy for Peyronies Disease" section below for easy reference. The numbers you see are references to supporting medical articles, and can be found in the original articled linked to at the top of this message.
QuoteBased on the information discussed, we believe that a therapy for Peyronies Disease based on the biochemical pathways responsible for fibrosis and contracture will be focused on some of the targets listed below. The basic principle is that although the intensification of plaque degradation by manipulation of collagenolysis is the most obvious goal, results to date suggest that collagen synthesis and tissue remodeling appear to be continue throughout the plaque life. This implies that the blockade of new collagen deposition through removal of pro-fibrotic factors can be an effective therapeutic strategy, since the endogenous collagenolytic and tissue repair mechanisms may then eliminate the existing excessive and/or abnormal fibers. The list of promising therapeutic targets to be investigated may include the following groups (see Figures 4 and 5, for potential targets):
NO/ROS (nitrosative/oxidative) ratio: the existing studies on antioxidant compounds (vitamin E, superoxide dismutase) to reduce ROS levels should be pursued and expanded with novel antioxidant agents. As an example, S-adenosyl-L-methionine (SAMe) to increase glutathione levels, and polyenolphosphatidyl-choline (PPC), to reduce lipid peroxydation, are in clinical trials for liver cirrhosis.142 Our work on the antifibrotic effects of NO suggest that this strategy may be complemented with the stimulation of NO synthesis to destroy ROS (iNOS induction or gene transfer,148,149 long-acting NO donors, L-arginine).
TGF1 action: since this gene appears to be one of the primary effectors of fibrosis and contracture, the use of antisense gene transfer to reduce its synthesis,143 antagonists to block interaction with its receptors (relaxin, synthetic peptides), neutralizing antibodies, or inhibitors of TGF1 activation (latency-associated peptide (LAP), inhibitors of tissue transglutaminase), should be explored in Peyronies Disease as in other fibrotic conditions.54,143 One interesting anti-TGF1 strategy is based on the use of decorin, already reported as having beneficial effects in the animal model.144
Endothelin/AT2 system: endothelin receptor blockers, angiotensin-converting enzyme (ACE) inhibitors and angiotensin (AT) receptor antagonists,54 may have effects similar to those reported for kidney and cardiac fibrosis, discussed above.
Myofibroblast apoptosis and differentiation: the NO-based therapy may induce myofibroblast apoptosis and the disappearance of the cell widely believed to intensify fibrosis and lead to the contracture. For this reason, inhibitors of fibroblast cell growth, such as colchicine,145 should be tested in conjunction with potential inhibitors of their differentiation, such as INF, effective for the treatment of keloid scars and inhibiting myofibroblast function, which has been recently applied for Peyronies Disease treatment.146
Collagen catabolism: an obvious target, though collagenase has not been successful.147,148 New avenues should include promotion of endogenous collagenase expression and blockers of endogenous metalloproteinase inhibitors,147 as well as more effective ways to deliver the enzyme (tissue uptake facilitators, electroporation.148
Inhibitors of post-translational processing of collagen: this strategy is being actively pursued for other fibrotic conditions, Therapies would include blocking proline hydroxylation, the cleavage of C- and N-terminal extension peptides by specific proteinases, and the inhibition of lysyl oxidase catalyzed inter- and intra-chain crosslinking, all steps operating in the deposition of collagenase-resistant fibers in fibrosis.54 A number of agents are currently in animal and clinical trials.
Inhibitors of elastin degradation: not yet explored, but possibly elastase inhibitors may be useful, particularly considering that elastin peptides resulting from its degradation may be strong ROS inducers.150 The integrity of elastic fibers is very important for the function of the TA.
Calcification and ossification: Calcium channel blockers other than verapamil151 may be effective, albeit by a mechanism more complex than simply preventing calcification. The considerable elevation of OSF-1 in the ossified Peyronies Disease plaque suggests that the blockade of this or related genes, or of the differentiation of stem cells in the plaque34 may avoid its irreversible hardening at late stages.
Ancillary pathways: the promotion of fibrin degradation by conventional fibrinolytic intervention may remove a persistent pro-fibrotic factor; the considerable MCP-1 expression in PD137,152 suggests that current anti-inflammatory approaches (corticosteroids, antihistamine) should be expanded to include novel non-corticosteroid anti-inflammatory agents. However, this may be counteractive if it blocks iNOS expression and NO synthesis. Thymosin , currently used for promoting wound healing,153,154 may have prospects in Peyronies Disease, based on the natural up-regulation of this gene observed in the Dupuytren's nodules.
Myrddin,
Good post. This needed to be referenced under this topic. Thanks
I have not had time to study this but I venture to make one comment that may be applicable.
If one of the objectives is to raise gutathione levels with SAM-e, I think maybe it can be done as efficiently and MUCH cheaper with N-Acetyl Cysteine (NAC). Our friends over at our sister site - Dupuytrens Society, frequently address NAC. http://www.dupuytren-online.info/other_therapies.html
I have taken it because it also shows clinical benefits for combating prostate cancer.
Here is an information page with a company I consider a bit pricey. I post only as a quick find on some useful information about NAC and glutathione. http://www.lef.org/abstracts/codex/n-acetyl-cysteine_index.htm
Puritan Pride sells NAC at a fraction of the cost they sell SAMe
Thanks Hawk.
Upon further research it appears there is also some evidence that "antifibrogenic action" may be gained from PPC.
Source:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=abstract&list_uids=12024107&query_hl=13&itool=pubmed_docsum (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=abstract&list_uids=12024107&query_hl=13&itool=pubmed_docsum)
It analyzes DLPC, "the main phosphatidylcholine species of PPC", and finds that it "fully blocked TGF-beta1-induced increase in alpha1(I) procollagen mRNA expression and decreased collagen accumulation in media."
BTW, I'd never heard of PPC before, so here's a definition - "PPC is Polyenylphosphatidylcholine (PPC) is a soy extract that helps maintain the fluidity and integrity of cell membranes. PPC also promotes the break down of collagen in the liver; excess collagen can interfere in the detoxification process. PPC's health benefits may not only be to the liver but may also support the stomach, pancrea, and cardiovascular system."
Vasoflow is described by the manufacturer at http://www.sann.net/vasoflow.html
It can be purchased more cheaply at by using Froogle or a similar search engine.
PPC should be useful, but as the authors point out, many therapies that "should" work do not seem to.
I believe that it might be that sometimes we are doing the right things to get better, but not enough to combat (successfully) the combination of factors that affect us. That is why I endorse the methods that some here epouse to take a more holistic approach to health and to increase the anti-oxidant therapy in general.
Tim
Just to answer Hawk's question regarding VasoFlow and ED. I think that the interactions that they are concerned about here have to do with the potential effect of VasoFlow on blood pressure. Anyone with hypertension is likely to be taking BP meds and if they were to stuff themselves with VasoFlow (which is really a very optimized Arginine formula), they could conceivably drive their BP down dangerously. And in the same manner, anyone with ED is likely to be taking Viagra or something akin to it. Viagra, as I have mentioned before here, was initially developed as a BP drug and is known to lower BP. The combination of BP and VF, if pursued over-aggressively could cause the same problem. Also, I would like to point out that after trying MANY different forms of Arginine and having all kinds of problems and little benefit, I finally discovered VasoFlow. It is really formulated for body builders, but since I am not really into body building, but am primarily taking it for Peyronies, I now take only one in the morning and one in the evening. I find that to be quite sufficient and I find it much more effective and far less 'harsh' than the usual Arginine products. And the way I take it, it is probably quite cost effective even though it would be expensive for a body builder who is going to be taking four to six of the capsules twice a day. I also have hypertension and have found that as long as I watch my BP and make sure it doesn't go down to far, I can do OK. In fact, I just encountered that issue (my systolic readings were sitting right on 50) and I quit some of my medication and that brought the systolics up to a more reasonable level of around 60. So I would think that if you have ED you would need to watch out for excessive drops in BP when you take the Viagra and perhaps also be aware of increased risk of Priapism perhaps. Other than that, I don't know what they might be concerned about. Also, VF DOES contain L-Norvaline. If you go back to the manufacturer website and punch 'Scientific Facts' on the side menu, it will take you to a review of the ingredients.
Hello everybody,
I had read the posts from now to October 2006.
I don't really mind to read them all, but I am a bit curious.
Some people over there, take some supplement for years to treat their Peyronies Disease? Any improvement? Stabilization?
My Peyronies Disease has start after an surgery in my belly. (2 years ago) I was taking MSM/Glucosamine/Choncroitide (spelling) for some carpal tunnel prevention. (I am a analyst developer) And some VIT E, here and there (usually after a hot and warm week-end).
The Uro diagnose a Peyronies Disease but cannot find scar tissues. I have a little bend to the left and it could be painfull here and then, but I cannot stand to not having sex less then 10 hours a week. ( i really love it with my lover and my spirit cannot live without it)
Actually, I take since 1 year and a half:
Vit E 400 UI (more of it is really hard to the liver and can alter his health in our old times)
Vit C 500mg X2 a day (PDI described the effect of it. Over there I read that it could cause Peyronies Disease... but on the web, I didn'T find any evidence of that)
Fish Oil ( here and there - I usually eat organic flax seed powder )
What had disturb me the most around the forum, is the warning around Vit C and MSM. The PDI website claim they help and prove with some studies their claims. The web give good mention about MSM and Peyronies Disease.
I cannot find anywhere the warning about it, but a lot of post of Rico about it.
Can you give me some source, some web page to verify the claim?
Last summer, I had tried the Fibrozym and Nattokinase enzyme system. Took it for 4 month. I add MSM and bromelain, for the last two month of that enzyme treatment. I didn't find any progression on my curve. A bit more firm and last longer erection, but that's it.
I stop the enzyme and continue with Vit E, Vit C and MSM.
My Peyronies Disease is not worse than before taking supplement and is not better.
So for now on, I will try the quercetin/bromelain (on PDI website), L-Arginine, Nattokinaze, Vit C, Vit E, MSM, Grape seed extract (that thing really have some good effect on the circulation system and it is nice for overall health - that will replace fish oil since I used flax powder seed) .
I got a nice MSM cream that really give some freshness of my unit. I put it on the Peyronies Disease side of it and i got some good feeling about that. Since, I do that, my flaccid state seem to have improved. A lot of time, my flacid unit looks like normal again. But not when I am in erection. I used that since the last month.
From 2 weeks, I got a severe irration, swelling and the like around the top of the skin of my unit. I read a lot on the internet to look for something that can reduce scar tissues or prevent them. I found that Emu Oil seems to have a lot of thing to help me when I abuse sex. That Emu Oil act like Copper Peptides but with no irritation at all. Emu Oil act like DMSO in bringing anything deeper in the skin. So, combining ViT E and Emu Oil around my scars is the real thing for me. Perhaps I will add something to break the scar tissues in that oil to bring it deeper and safer than the DMSO/Copper combo.
But perhaps I should stop the Vit C and MSM...
I should add Gingko/HGW has well. ( I don't want to take chemical pharma patent to heal myself, so those herbs could give me same benefit ) But at least, I don't have erection problems, so perhaps I will add them after 2 month of my new cocktail :D.
I have seen a naturopath (don't know how to write it in english, but the people that do study on the natural supplement and their relations with the body) and she claims that to be really effective, any cure from supplement should have a "purification body" phase. Which means like a 1 week vegetable/fruit diet and after that a formulation of herbs to help clean liver and kidney. So perhaps, to raise the effectiveness of every think we take, we should clean our body with that thing then restart our Peyronies Disease cure.
I take Doctor's Best product (cheapest of all on iherbs.com) but I am not sure about the Consummer Report... Perhaps, I should switch to NOW FOODs like George I had done.
To resume my post :
Something new that can help :
- MSM cream
- Emu Oil
- Grape Seed extract (will try it)
- Quercetin (will try it - I got a lof of uncle/aunt that died from cancer and that thing seems to prevent the formation of it)
Perhaps those are old solution that have not work for anybody...
It is recommand by naturopath to take a "cleaning cure" of the body before taking a new regime of supplement to help their effectiveness.
Does MSM and VIT C really worsen the state? ( i have in the same condition for 2 years ) Please, give me fact and studies.
Please give me all the feedback you can,
Jourdelune
I read on this forum where using Neprinol can be counterproductive. I couldn't find the posts again, but several people said that after improvement when using Neprinol, and then stopping, their conditions were worse than before. I bought a bottle and began using it, however, I am afraid to continue after reading that disturbing information.
Help me, please!!!!
The forum has a powerful search function at the top right of the page. Type in Neprinol and the posts with "Neprinol" in them will appear. There will be many to read... I'm sure you'll get your answer there... and welcome to the forum!
Your post covered a lot of ground, so it will be harder to address it en toto.
Some thoughts:
A Naturopath may claim to have a way to help fix Peyronie's disease, but I do not believe her. For me, "data talks and bs walks". Have her show you one study that demonstrates efficacy to her methods - she will not be able to do so. However, there is merit to making some changes one step at a time to see if they are helpful.
Vitamin C is not of proven benefit, and may promote collagen formation (helps make scars). However, it is part of a good anti-oxidant diet, IMHO, and will be neutral or mildly helpful to your health, but not helpful for your Peyronies. I take 1000 mg a day using a timed release capsule that allows the Vit C to be given to me gradually, instead of dumped into my system all at once and hence urinated out an hour later.
I do not have an opinion about nattokinase etc. They seem like they should help but are of unproven benefit.
Although I cannot recommend Emu Oil or MSM, I personally use both alternate nights at bedtime to rub in. I have seen no benefit from either, but no harm. I might add that in the last thre emonths, my Peyronie's has stabilized after getting worse (clearly worse) off and on for the past two years. It is not superstition, but caution that makes me make changes to what I am doing now only very slowly!
Finally, although you may feel that your well-being depends on having sex 10 hours a week, you might want to rethink that. Nothing wrong with that at all, but it is also true that you can love somebody without acting sexually constantly.
Tim
Quote from: Angus on April 03, 2007, 07:03:38 PM
The forum has a powerful search function at the top right of the page. Type in Neprinol and the posts with "Neprinol" in them will appear. There will be many to read... I'm sure you'll get your answer there... and welcome to the forum!
Thank you, Angus.
bodoo2u, I would suggest that any substance that is capable of in any way restraining or reversing Peyronies is also capable of creating a backlash or rebound effect when you stop it. This would be especially true if one were taking the substance in large amounts. I took Neprinol for a number of months, but not in the large amounts they advise. My primary concern about Neprinol is the fact that it has never be subjected to independent testing and it is extremely expensive. That is why I never consumed it in the quantities promoted for it. For the same expenditure I can buy a whole range of potentially helpful supplements and make pretty extensive potentially helpful lifestyle changes as well. And for me, as I have expressed many times before, there is some underlying condition that allows Peyronies to develop in the first place and as long as that is not addressed, no amount of efficacious drugs and/or supplements are going to cure the problem. First you remove the causative factors, then you attack the specific issue of Peyronies.
Thanks George.
According to Wikipedia cAMP (Cyclic Adenosine MonoPhosphate) is a molecule that is important in many biological processes. One of those process relates to Collagen, an important factor in Peyronies Disease. Ironically, some of the same raw materials are used by the body for the production of both Collagen AND Nitric Oxide. And one of the roles of Nitric Oxide is to break down Collagen. Thus this biological 'switch' determines whether our bodies are accumulating or dissolving collagen at any given point in time. Since Peyronies plaques are composed largely of Collagen, achieving a reduction in Collagen would probably be 'a good thing'.
A number of substances in our body play a role in managing this switch. They include such factors as: PDE-5, TGF-beta-1, Arginase, and cAMP. Of these, all except cAMP have been discussed at length on this forum. There are available supplements which modify the activity of each of these and in this post I would like to discuss issues surrounding cAMP which I suspect has been somewhat neglected.
The link between cAMP and Collagen is pointed out in this study:
"An increase in cAMP from 40 to 73 pmol/mg protein was effective in suppressing collagen production ..."
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=370713 (http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=370713)
So the question becomes "What supplements might I be taking that would increase cAMP levels in my body?
1) According to this study (and several others) Osthole contributes to an increase in tissue cAMP levels:
"Osthole (50 mumol/l) enhanced the increase in tissue cAMP and cGMP levels induced by forskolin and sodium nitroprusside, respectively, and in higher concentrations (100 and 250 mumol/l), itself increased markedly tissue cAMP and cGMP contents. Osthole (10-250 mol/l) inhibited the activity of cAMP and cGMP phosphodiesterases in a concentration-dependent manner. It is concluded that osthole exerts a non-specific relaxant effect on the trachealis by inhibiting the cAMP and cGMP phosphodiesterases."
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8170504&dopt=Abstract (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8170504&dopt=Abstract)
Note that the term "phosphodiesterases" refers to the breakdown of cAMP and cGMP, which when inhibited by Osthole results in the accumulation of cAMP and cGMP. Osthole is a component of the herb Cnidium Monnieri which is an ingredient in SAN VasoFlow. Note that one of its other effects is the relaxation of smooth muscle tissue. Very interesting, no? Note also the mention of Forskolin and how Forskolin and Osthole together create an enhanced effect. Another study pointing out the relationship between Forskolin and cAMP follows.
2) According to this study Forskolin is a powerful upregulator of cAMP:
"But under the same conditions, the melanocortin 1 receptors of fair-skinned mice do not generate a strong signal. To bypass this "block" in the tanning pathway, the researchers gave the mice forskolin, one of several drugs that activates cAMP."
http://www.nci.nih.gov/ncicancerbulletin/NCI_Cancer_Bulletin_092606/allpages/print (http://www.nci.nih.gov/ncicancerbulletin/NCI_Cancer_Bulletin_092606/allpages/print)
Forskolin is a component of the Indian herb Coleus Forskohlii which is available as a stand alone supplement or as a component of several weight loss supplements (Forskolin also ramps up the metabolism of fat). Forskolin should be used with care by those with hypertension or certain cardiac disorders caused by weakened heart muscle because it can, over time radically improve those conditions. If you suffer from ANY serious medical condition other than Peyronies you should coordinate the use of Forskolin with your physician.
These are just two additional possible vectors that can be applied to Peyronies issues. At this point I have been taking SAN VasoFlow for some time and just upped the dosage from two per day to three per day. I credit it to some degree with the fact that I have been able to successfully get off of my blood pressure medication after 18 years of hypertension. But diet and exercise were crucial in that achievement as well and I would suggest that they are crucial in successfully dealing with Peyronies as well. I am convinced, for example, that aerobic exercise is a powerful up regulator of Nitric Oxide which is very beneficial over the long term in reigning in Peyronies. Right now I am seriously looking at Forskolin and will probably be employing it as well. I think it is pretty cool since it addresses not only cAMP, but it also has been shown to promote weight loss, lower blood pressure, contribute to cardiac health AND prevent urinary tract infections. Thats a pretty impressive list!
- George
Hello This is Hopeful.... where did you get the MSN Creme?- DO you reccomend it?- How old are you and how bad is your Peyronies Disease?
Quote from: Jourdelune on April 03, 2007, 11:03:23 AM
I got a nice MSM cream that really give some freshness of my unit. I put it on the Peyronies Disease side of it and i got some good feeling about that.
Been a while since I've seen much discussion about efficacy or treatment with Pentox. Has anyone experienced or heard of any success with this supplement?
The good doctor posted his new batch of answers to his Q&A .... he feels that viagra and cialis will only do one good if they take it at the onset of peyronies, but once the scar is there, well Like Tim always says, it is like closing the barn doors after the cows are out..... he only prescribes it if you are having problems with erections....
pentox and arginine he feels is cheap vs the high price cost of say viagra....he thinks the sceince might make sense for these products and low side effects.... but the jury is still out if they will really help much.... kind of you got nothing to lose deal:)...
Pentox is cheap and this is why maybe it is first choice by Lue.... I got off it after three months and feel better, stomach that is and went back to ginkgo and get the same hang.... I do like cialis if I'm going to let the horse out of the barn.... seems to work best for me.....
Anyway his Q & A might be of some interest to you all, take care and God Bless.....
Rico
Hi Rico,
Just wanted to point that out if others thought they were biologically equivalent.
Do you have a link to the Doctor opinion you are talking about?
Tim
I would just like to point out here that it is really fortunate that Pentox is as inexpensive as it is. As for Viagra/Ciallis, Horney Goat Weed (Icariin) is almost certainly a closer analog to Viagra/Ciallis than is Ginkgo to Pentox. Viagra/Ciallis is given at a rather low dosage level for Peyronies anyway. And, of course, Arginine is basically a commodity item and can be had in some really advanced formulations like SAN VasoFlow. So, once one has the prescription for Pentox, the heavy lifting on the part of the physician is done. The patient can then round that out with HGW, VasoFlow and Broad Spectrum E and have what is probably one of the best, if not the best, treatment for Peyronies currently available. So, regardless of Lue's rational behind prescribing ONLY Pentox, it does make sense. Viagra/Ciallis are probably among the most over priced medications on the market. Go figure. But fortunately they are probably not essential for the effective treatment of Peyronies.
- George
George,
Where do you get that pentox cures peyronies or is the best treatment out there..... Levine seems to think different..... pentox is cheap and easy to prescribe... helps with blood flow.... and go say ginkgo is no way like pentox like goat weed is like Viagra is absurd.... they are not even close.... Horny goat crap compared to cialis or Viagra..... Levine just said that pentox isn't going to do much after the fact(scar is there already), if you have a injury to your penis and start on it right away it will slow down the scarring.... I took pentox for over four and half months...and I have taken ginkgo.... I get a better hang from the ginkgo and no side effects.. nothing gets me more erect than cialis or Viagra..... arginine works for blood flow...... I would have concur with the Old Man and doctor Levine.... Levine goes with the fast size and the Old Man of course the VED, the use of these devises is your best chance to some improvement as of now..... Levine says you can improve up to 30 degrees but that is about it.... so if you are 90 then you will be 60, you can do the math....he like the needle also, maybe it is the perforation that is working and not the verapamil???? Once again if you scar is there already you can take pentox to the cows come home and all of the pav and it isn't going to reverse your condition, it will help with blood flow and maybe stop it from getting worse.... time also seems to do the same....become somewhat stable in some cases.... I have had this crap for a year.... what works for me because of the hinge effect is..... cilias for sex..... gingko and arginine for good blood flow and VED to stretch the plaque...... Levine said that 90% of his patience have ED because of peyronies..... or I should say some sort of disfunction, maybe it is in the head or physiological..... and he only prescribes the cialis or Viagra if you have this problem..... he also said the pav cocktail can't do you harm, the science seems good behind it, but no evidence that it works, and it has been around for a long time.... If Pentox wasn't so cheap I wonder if that would be the first choice?
Rico
Rico,
First off lets be clear that, because Dr. Levine says he thinks something, it does not make it so. I am sure he would be the first to agree with that statement. I am very sure that he deliberately says "I think' and "I don't think". Dr. Levine is a rational thinker and chooses his words carefully. He does not claim to know since he would have no way of knowing without large, controlled, blinded, randomized, studies. It is important for us to understand his opinion but it is also important that you not overstate his opinion. Other doctors have seen resolution in mature plaque. Like Levine, they do not know that it is effective in such situations but there is some evidence.
So what we have is some evidence that pentox can resolve mature plaque, some opinion that it cannot, and no proof of anything, including no proof that it even prevents advancement of new scar tissue. The fact that it did nothing for you after just 4 months contributes nothing to the body of incomplete evidence. First you cannot expect the gradual tissue normalization to occur in that time frame. Next, you can never know if you would have gotten worse during that period without pentox
HGW and Viagra are similar in type but not strength as far as how they act as a PDE5 inhibitor. Ginko and Pentox in fact effect the blood in ways that are less similar to each other. That does not slur Ginko. it does not even say Ginko is not as good as Pentox. Those issues were not addressed in Georges statements. George's point is:
There is better evidence for Pentox than most other oral treatments.
Pentox is cheap
There is evidence for Aginine.
Arginine is readily available.
There is evidence for small doses of Viagra
Viagra is very expensive
HGW is cheap and is a weak PDE 5 inhibitor similar to that of a 1/4 tablet of Viagra
Conclusion: As I understand it, George thinks that if you must substitute, that it makes sense to go with the 2 cheap standards of pentox and arginine, and if you must substitute, then substitute HGW for the costly Viagra. You may disagree, but no one could say that George's opinion is unreasonable.
Hawk,
I respect George's opinion, but I don't agree with horny goat weed being closer to Viagra than pentox is to ginkgo.... Mayo Clinic has a report which they study the two.... so they look at them as being in the same arena....
George said the the pav is the best treatment out there for peyronies today.... I disagree... and wouldn't want members of the forum to be mislead..... I think that for some maybe VED might be the best forum... or the fastsize and verapamil shots...... Maybe VED alone, maybe the knife is best for them..... I think that the pav is good for blood flow and keeping the tissue healthy.... if one can have a chance of correcting his curve by 30 degrees with VED wouldn't they want to give that a chance also?
I have said my self that I thought that the pav was the best it seem to be out there for oral supplements..... I don't agree with that anymore.... no evidence on that.... or very little.... we are all different, so there is no best treatment for anyone.....
I have also read post for the pentox lovers on the forum and guess what, they don't take pentox..... go on it for awhile and then post..... I went on it, and I have a VED... and use arginine, I have found that ginkgo works better for me, this is real life..... I believe if you don't have a ved then you don't have a peryonies treatment going on also..... it is hard to do and follow up on.... I haven't done it like I should, pentox made me get red dots of blood when I used it... they are just starting to go away now.... so I will resume with it......
The best treatment is the one that you find works for you....
Rico
Quote from: Rico on April 18, 2007, 01:39:19 PM
Hawk,
I don't agree with horny goat weed being closer to Viagra than pentox is to ginkgo....
W H Y ?
I think the facts disagree with what you think on this issue.
Pentox is prescribe for claudication.... this is what it was made for.... Mayo Clinic gave Ginkgo a "A" rating for Ginkgo and Claudication...
http://www.mayoclinic.com/health/ginkgo-biloba/NS_patient-ginkgo
Rico
Rico,
I think you missed my point and my question. We all know that Ginko thins blood and can increase circulation (as well as increase bleed time), but it does so in a different manner than pentox which actually changes the shape and size of blood cells.
HGW acts in a manner very similar to Viagra (both are pde5 inhibitors)
In light of these facts how can you not agree that HGW is closer in method of action to Viagra than ginko is to Pentox?
Just to clarify my position. When I indicated that I thought that the PAV approach was the number one best treatment for Peyronies, I was referring to available oral treatments and not attempting to compare PAV with VED or other approaches. And I stand by that statement. And for the record, like Rico, I take Ginkgo and not Pentox. I have never indicated otherwise. Rico can read anything he wants into that situation, but the reality is that even though I am taking Ginkgo myself, I honestly consider it second best by far to Pentox, but Pentox requires a prescription and at this point I haven't pursued that track. That does NOT mean that I won't pursue it in the future. I do think that Ginkgo is likely equally effective to Pentox in terms of blood flow which it achieves by an entirely different mechanism. And, when it comes to Peyronies, blood flow is important. Where I suspect that Ginkgo falls short is in terms of TGF-beta-1 activity. I have seen nothing in the research indicating that Ginkgo is anywhere near as active against TGF-beta-1 as Pentox is, and with Ginkgo (unlike with HGW), you can't just take more of it because you would be killing your platelets and risk bleeding to death. I also stand by my claims regarding Horny Goat Weed. If you get a good, uncontaminated brand of Horny Goat Weed, it will work just about as well as Viagra at a fraction of the cost IF you take enough of it. But if you are taking a lot of it, you need to be sure that it is not full of lead. Some products out there are, I can assure you of that, so be careful. Puritan's Pride and Vitamin World products are pretty much guaranteed to be clean. I use Nature's Way and I think they are fairly careful. Rico had a bad reaction to Pentox. That can happen with any drug and even with supplements. I fully understand why he has chosen NOT to take Pentox. But that doesn't make Pentox a bad drug, and it doesn't mean that it is universally ineffective against Peyronies. I think he is giving it a bad rap due only to his negative personal experience with it. I had a lot of problems with Arginine, but I kept trying different things till I finally found a formulation of Arginine that I could tolerate. A lot of stuff is like that. It is easy to just throw the baby out with the bathwater due to one or more bad experiences, but I am convinced that Peyronies can be beaten with the stuff available today if one has sufficient tenacity and determination. And that includes those of us with old tough plaque. I am not impressed with defeatist rhetoric. I think it is a waste of time and energy and prefer instead to spend my time pursuing a solution.
Rico,
I cannot understand why you persist in making comparisons between drugs/supplements that are not supported by pharmacology.
"Blood thinner" is a vague term and can (and does) refer to different mechanisms.
Pentox and Ginkgo do not work the "same" when it comes to TGF Beta1 inhibition. Ginkgo does not affect TGF, so to compare them is simply erroneous.
Icariin and Sildenafil (the active ingredients in Horny Goat Weed and Viagra) work through EXACTLY the same mechanism.
SO, yes, HGW and viagra ARE "the same", and Gingko and Pentox are NOT "the same", aprticularly when it ocmes to TGF. Their role in changing coagulation is through different mechanisms, as far as I know, to boot.
The facts in the matter are easily found. Therefore, I cannot understand you preiodically repeating this error on the boards. Is it forgetfullness or do you disagree with this?
Tim
George I have been pro active in my peyronies and just stated what has worked for me and what hasn't..... I find it hard to believe that anyone that is sold on pentox wouldn't go to the doctor and get some.... I took it for almost five months.... along with the full pav... didn't miss a day.... now I'm on ginkgo and arginine and cialias along with VED and the Dash diet plan along with working out, and I do think this is a positive approach..... If you think that pentox would reverse your plaque, then you should take it... like I said, I'm surprise your not if you feel so positive about it.... I got sold on it and try it and have study it also and have come to my conclusion on it.... they say the science makes sense, but the evidence isn't there.... I went to the doctor, got the prescriptson, five months.....I took it:)....
Some of the first articles on pentox are over five years old..... I haven't seen anything from Lue or anyone else on it since.... why isn't this forum saying I love pentox.... the only ones I hear promote don't take it..... I rather hear from someone who is actually using it and what it did for him.... that is evidence.....
I don't even want to compare horny goat weed to cialis.... in my book looking at them in application and function there is no comparison.... you say if you eat enough and it doesn't have lead in it and eat alot of it you can get the same effect..... that is enough to make me choose Cialis..... I really like cialis, don't care much for Viagra..... I bought a couple hundred dollars worth six months ago, still have a good month supply left or more.... I found now that I can cut up a 20 into half for when I'm tried and if I feel good with a shot of arginine I can get some good wood with 5mg.....
The biggest problem I had with the pentox was the stomach problems and over all health(feeling) of my body, heavy legs.... I stay on it though for over four months(almost five).... and kept reading about it and trying to stay positive, people on the forum said the doctor told them that after several months it was going to do what it was going to do..... DannyOcean and others where on it..... I talk to my doctor and he didn't want me to stay on it any longer either.....
Once I got off of it, I started to feel much better, eating right, able to work out harder ect.... legs felt great.... but I stayed on the blood flow formula, just switch out pentox for ginkgo.... tgf beta1 blocker, maybe not the same..... once again there is no proof(evidence) on this....
I would put up with stomach problems, heavy legs, ill feeling like I did for almost five months for another five years if I thought for one minute it would help and there was any support to this....
I will find the article I posted before on here on ginkgo and the tgf beta1 blocker... don't you remember George.. you told me this was a good find and you now believe in Ginkgo....and it was like pentox...
Rico
Rico, I don't think I ever said that Ginkgo was not active against TGF-beta-1. There are studies out there that conclude that it is. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_uids=16923344 (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_uids=16923344) My concern is that Pentox has been around for ages and has been demonstrated to be active against a broad spectrum of fibrotic diseases. In fact the evidence for Pentox in relation to Peyronies is probably weaker than for any other major form of fibrotic disease that it has been tested against. This, alone, is an indication to me that, if anything, the effectiveness of Pentox against Peyronies may actually be underestimated. And I would maintain that even five months is not much of a test for Pentox. I think five years would maybe be a more realistic time frame. But I also would tend to agree with you that there are indeed other factors which are equally important. Especially diet and exercise which I believe are hugely important. Reduction of Omental fat and inflammatory factors simply can't be emphasized enough. But having done that, I still feel that Pentox can be an incredibly effective tool. I know that I am not taking Pentox myself. I also know that I have been a very strong advocate of the VED and I am not using a VED. I don't think you have to use something yourself in order to see the benefit of it. I, like everyone else on this forum, have my own set of health problems. And to be quite honest, Peyronies has taken a back seat to hypertension which I have been far more concerned about. At this point I am thankful to be off of all my prescription hypertension medication and I would like to keep it that way. Pentox is not really high on my list of effective treatments for hypertension and HGW is. Therefore, at this point, I haven't pursued Pentox. But that option is definitely open in the future. I am glad to hear that what you are taking is working for you and that you are doing well. If you haven't yet done so, go and visit http://www.realage.com (http://www.realage.com), you'll find a lot of fascinating stuff there. - George
Quote from: Rico on April 18, 2007, 06:14:30 PM
I don't even want to compare horny goat weed to cialis.... in my book looking at them in application and function there is no comparison.... you say if you eat enough and it doesn't have lead in it and eat alot of it you can get the same effect..... that is enough to make me choose Cialis..... I really like cialis, don't care much for Viagra.....
;D what a classic Rico response to Tim's post. I see a familiar pattern we have learned to love ;D Tim uses absolute fact to make a point. You ignore it and other facts as though you hope they will go away. Then you make a baseless statement offering no more than "
in my book" as a reason. I think we would all love to read that book sometime Rico. Whats in it ??? ;D
We are all glad you like Ginko. It is a good product. We are glad "your book" says it works just like Pentox. We are also glad you like your hundrends of dollars of Cialis and that "your book" say it works through totally different channels than HGW. Since we have never been offered "your book" we are stuck reading boring facts.
Peace and happy reading ;)
I purchased a bottle of aloe vera softgels the other day and noticed that soy lecithin was the foremost ingredient. I am allergic to soy. Is there a brand out there without soy in the ingredients? Also I would like to know from the med experts on the forum if soy lecithin is all right for someone who is allergic to soy? I know that is sometimes possible because nattokinase is made from soy, but Neprinol has a significant amount of soy in it and is said to be soy free.
I do understand the discussion and agree that the two work through the same mechanism. However, so do a Moped and a Ferrari. No matter how much you soup it up, its still just a Moped. But, a Ferrari...............S W E E T!
Liam
Quote from: Liam on April 19, 2007, 06:41:41 AM
I do understand the discussion and agree that the two work through the same mechanism. However, so do a Moped and a Ferrari. No matter how much you soup it up, its still just a Moped. But, a Ferrari...............S W E E T!
Liam
Liam,
I like such an analogy. If someone were to say that a Yugo and a Ferrari (HGW and Viagra) worked on the same principle they would be absolutely correct - internal combustion engine transferring torque to a drive train in a 4 wheeled vehicle.
If they were to say that a hang glider and a Moped were much like each other (Ginko and Pentox) they would be very wrong. While they can both transport you, what they do and their method of doing it are very different.
I will read up on that report George and Rico. The anstract underwhelmed me - and remember that cell lines are not the same as human (or even lab animals) - it looks like the effect on TGF is "a little".
Tim
Hey guys:
If you guys want only just the aloe vera, go out to the nursery and buy you an aloe vera plant. We have used the plants for years to treat burns. Rubbed on immediately after a burn and the sting goes away at once. It also heals much faster after using it.
It should work just as well for use with Peyronies Disease, only you have the natural juice of the stem rather all the other added stuff when you buy the gels, etc.
IOW, try it, you might like it!
Regards, Old Man
Thanks OM. You're always a big help to me.
QuoteI will read up on that report George and Rico. The anstract underwhelmed me - and remember that cell lines are not the same as human (or even lab animals) - it looks like the effect on TGF is "a little".
Tim, certainly all indications are that the effect was 'measurable'. But I am very convinced, that unlike in the case of Icariin v Viagra where the ratio of the effect is known, with Ginkgo we are dealing with an UNKNOWN quantity as to the effectiveness ratio. And while I have great respect for Rico and have found a great number of his points extremely useful (to the point that I myself am taking Ginkgo), I simply can't attribute the same weight to anyone's testimonial ("my book") as I do to objective medical research. The research I am seeing says that, yes, Ginkgo does suppress TGF-beta-1. By how much? Who knows? But the very wording in the available documentation is simply screaming "not by much". On the other hand, Pentox has to be one of the most effective and proven TGF-beta-1 blockers out there. So if you want to really seriously attack TGF-beta-1, I think that Pentox is THE way to do it. Now of course there ARE other potential targets in the same pathway. By directly attacking Extracellular matrix synthesis for example, and there are supplements that can do that. But only Pentox really SERIOUSLY goes after TGF-beta-1 itself. Thats the reality, and thats what Rico seems to be resisting.
Old Man, with all due respect, fresh aloe from the plant does not have the same pharmaceutical effect as what is included in the soft gel formulation. The aloe in the soft gels is processed with heat and in other ways in order to give it qualities that are not found in natural aloe. It is also highly refined to make sure the toxic latex is removed. Actually eating fresh aloe from the plant is highly risky. If you happen to get enough latex in the dose, it can make you very sick. Using it for burns is fine (we have the plants and use them for external stuff all the time), but I would definitely NOT consume it orally. The allergy to soy is problematic in this case, since the composition of aloe in the soft gel form is highly standardized in the industry. Most of the formulations I have seen make use of soy as a fat base to greatly enhance the assimilation of the active ingredients in aloe. But iherb.com carries the NOW brand of Aloe softgels which I currently have on order which replaces the soy with rice bran oil and is designed to be soy free. I have used both iherb and NOW products for some time and have found them to be reliable. Here is the link: http://www.iherb.com/store/ProductDetails.aspx?c=Herbs&pid=NOW-03036 (http://www.iherb.com/store/ProductDetails.aspx?c=Herbs&pid=NOW-03036). I only use two softgels per day, not the significantly larger number that the NOW label suggests. These would perhaps be an option. Puritan's Pride also has what amounts to the same formulation in tablet form, but I have never used the tablet form and am not sure as to its effects http://www.puritan.com/pages/file.asp?xs=BEDC8031873248948487461D4109057E&PID=&CID=&CPID=994 (http://www.puritan.com/pages/file.asp?xs=BEDC8031873248948487461D4109057E&PID=&CID=&CPID=994). They also have the soft gel form WITH soy and a capsule form that probably contains a significant amount of latex that I would avoid.
- George
George:
Sorry I did not clarify my comments about the aloe vera for Peyronies Disease. I did not mean that it should be taken orally. It is to be applied directly to the penis in the affected area.
I know that the bought stuff has all the other things in it, but sometimes, one does not need the risk of side effects, etc.
Old Man
Old Man, I take it you meant to say "I did not mean that it should be taken orally." I would agree that home grown aloe is fine for topical use. But when it comes to internal use, one should choose a formulation designed for that purpose. And different oral formulations have different effects depending on which components of the plant are included, which are filtered out, and what sort of base is used. The traditional forms have been bulk gel, bulk liquid, capsules and soft gels. Now we have other forms, including freeze dried in capsules and tablets. Some of these are targeted toward digestive tract inflammation, others toward relief of constipation and still others toward addressing general health issues. I have taken aloe for some time now and have experienced a number of benefits. However, I can't say that I have seen any positive effect in terms of the Peyronies. I THINK it might be helpful for Peyronies, but their is no basis in research for that, it is just my speculation. And I have to say very honestly for the benefit of folks like bodoo2u, if I was ONLY concerned about Peyronies, I probably would not be taking aloe vera. There are just so many other things that are proven to be helpful or potentially helpful for Peyronies and I would be concentrating on those things. The one thing it is extremely important to know about aloe formulated for internal use is that some of these products are extremely abrasive laxatives that are NOT designed to be taken for any extended period. In fact the FDA has expressed major concern that some of these products can be quite dangerous. So it is very important that if you are taking an aloe product and you get a major laxative effect with heavy cramping, stop it immediately and get rid of it. It is NOT the type of aloe that you want.
Just pondering a very interesting factoid about TGF-beta-1. One of TGF-beta-1's upstream precursors is Angiotensin II. Angiotensin II is what makes blood pressure rise. That means that people with elevated blood pressure due to low level Renin-Angiotensin activation, EVEN if it is not at a level considered hypertensive, are also going to have elevated levels of TGF-beta-1 on a systemic level. Interesting?
George, I agree with you that the connections are interesting. PAF (platelet activating factor) is also one of the mediators that is of interest to me.
Tim
George:
Yep, I did mean NOT taken orally, have corrected my post accordingly.
Your post is well taken about taking aloe vera internally. One of the men in my family had taken the liquid form for several years before he realized that it did not work for his problem. He was taking it for a stomach disorder as prescribed by his internalist. After years of taking it, he finally had an operation for a constriction/entanglement of his small intestines.
Anyway, very good post. You have a very vast knowledge of the alternative solutions as stated in your posts. Keep up the good work.
Old Man
George,
Can you tell me what those other things are that are helpful or potentially helpful to Peyronies, and please don't direct me to other posts if you can help it. Maybe you could give me a list of those things.
First tier:
1) Full spectrum vitamin E (key anti-oxidant)
2) Horny Goat Weed with Icariin (PDE-5 inhibitor)
3) SAN VasoFlow with L-Arginine (NOS precursor)/L-Norvaline (Arginase inhibitor)/Osthole (cAMP upregulator)
4) Forskolin (cAMP/cGMP upregulator) - Use caution with this one, it is potent
5) Major lifestyle adjustments - key books: DASH Diet http://www.dashdiet.org (http://www.dashdiet.org) and YOU: ON a Diet! http://www.realage.com (http://www.realage.com) (these cover issues so expansive it would take a book to explain them all).
6) Pentox
7) VED
Second tier:
1) Ginkgo Biloba
2) OPC/Pygnogenol/Resveratrol
3) Time Release Vitamin C
4) Vitamin K2
5) Nattokinase
Please don't attach any significance to the ordering within the tiers, I am not attempting to rank stuff according to my perception of its effectiveness. But I do consider the stuff on the top list to be more effective than the stuff on the bottom list at this point.
- George
Hello all,
I had post a while ago (on the first page actually).
I just start my new Cure (ACL, Grape Seed Extract, Quercetin, Vit E, Nattokinaze -btw i don't got ED so, my protocols could be different than others), so I can't comment on it now.
But the Emu Oil is wonderfull. That oil is better than vit E cream 28000 unit I got when I used my unit too much.
So, i am really satisfied by the Emu Oil to help on recovering skin problems.
The scars (tissues stretching... something like bumpy... hmm i don't know the terms) are less visible, less fragile (they seems to open less frequently ) and the annoying feeling they bring me in sexual intercourse has fade to 20% of what it was before...
I think I will use it when need (I give some break time to it, but when I want to enjoy a lot of... I will help curing it with that).
iherbs.com have some with nice price.
Jourdelune
anyone ever tried this? it's available in combination with salmon-oil (omega 3), for example in this product http://www.newstarget.com/008334.html
I'm more and more convinced that what I'm suffering is a cronic inflammation inside my penis. omega 3 capsules, that I've only just started taking two days ago, seem to help a lot
meanmrmustard,
I wish you well, but in all due respect fish oil capsules are only a food, a nutrient. It is the equivalent of eating a piece of salmon. I will never believe these could impact any condition in two days.
There is no doubt whatsoever that you have inflammation if you have Peyronies Disease. An anti inflammatory diet over a long term may have some positive impact on this but it will not impact you on the day you take it., or even the week. I was eating 7 servings of fruits and vegetables per day, taking vitamin E, NAC, flax seed, Alpha lipoic Acid, CoQ10, and eating wild caught Alaska Salmon 2 times per week when I developed Peyronies Disease. I was also doing many other nutritionally sound things for my body during this period.
I have to agree with Hawk on this one. Anti-inflammatory strategies are extremely important, but anything you take orally is going to take a long time to have an obvious impact. Pentox itself, with a very powerful anti-inflammatory effect, takes a long time to turn Peyronies around. But then there might be better ways to deliver anti-inflammatory elements to those stubborn plaques. That would be extremely cool. - George
When we discuss inflamation of the penis, are we talking red, swelling, painful inflamation? Or is it a nebulous kind of inflamation. The latter seems best to describe my own symptoms. I'm never quite sure. ???
Is it me or is it inflamation?
Liam
Quote from: Hawk on May 15, 2007, 05:04:50 PMThere is no doubt whatsoever that you have inflammation if you have Peyronies Disease.,,,,,,fish oil capsules are only a food, a nutrient. It is the equivalent of eating a piece of salmon. I will never believe these could impact any condition in two days.
I understand your doubts, but as I don't have Peyronies Disease, I'm experiencing different reactions. what I (think I) have is some kind of weird, indiagnosable inflammation, causing severe ED. that means that as soon as the inflammation stops, my dick and my erections should go back to normal (*). I immediately noticed effects taking pentox (I stopped cause it messed my stomach up), as I did with L-Arginine. and above all, if I don't take Vit E, my dick will be smaller and less sensitive the following day.
* I actually had an experience that backs this theory a few months ago: for some other reason, I had to take antibiotics. the first night after I took them, I woke up with an almost 'perfect' erection, something I haven't had in years. However, even though I kept taking the antibiotics for 5 days, the improved erection didn't ocurr again. can anyone offer a plausible explanation?
MeanMrMustard,
Antibiotics do not cause one to have firm erections - not to my knowledge.
Since you are capable of having a normal erection at all, then it is more likely than not that your problem is psychological and not due to inflammatory changes in your penis or tunica albuginea.
I recommend that you try a larger than average dose of viagra (ie 100 mg) and see if you do not get a good looking erection. If you do, then you are on your way to recovery. If you get a very hard erection, but it maintains an abnormal shape, then there is no way that an antibiotic made it normal for one day. In either event, it suggests to me that you might benefit from going to a sex therapist to explore how you are feeling and if you have any underlying issues that are complicating your sexual health right now.
Tim
Thanks for your advice Tim. however, I apparently gave false impressions - once again let me point out that English is not my mother tounge. first, I know that antibiotics don't cause erections. what I was trying to say is that the antibiotic obviously blocked something out that usually prevents me from getting good erections. second, the physic nature of my dysfunction is out of question. I mean there's probably anxiety and preocupation adding to it. but all the problems started after bending my erected penis sharply inside my pants. erections became weaker and weaker, in flaccid stat I had the hourglass, loss of sensibility and so on.
as to the inflammation, there's times when I think I can even feel it - strange hot/cold feelings in my penis that reach down to the thigh of my left leg.
I am aware that the conclusions I draw are amateurish and maybe improbable, but as the doctor's toolsets failed in finding the cause for the ED it is now up to myself to find the solution.
Meanmrmustard, What is the name of the antibiotic that you took? How many MG?
Is full-spectrum Vitamin E also referred to as Gamma Vitamin E?
The key with Vitamin E is to look at the ingredients.
Absolutely essential:
400 IU NATURAL alpha-tocopherol
295mg NATURAL gamma-tocopherol
Even better:
The above plus the other two tocopherols and the eight tocotrienols
I started Pentox yesterday and I've been a little jittery, didn't sleep well last night. I'm hoping these are transitory side effects. Has anyone had a similar experience?
Chad
Other people have mentioned side effects. I noticed absolutely nothing.
Hey Chad, I did not experience the jitteryness side effect, or have any trouble sleeping. During the first weeks, I had some strange sensations of more bloodflow (more tingly) in my legs, especially after running or exercise. This went away after a few weeks, and now I can't tell feel any side effects from taking it. Goodluck with the pentox, and keep everyone updated on your progress. Definitely fight through any side effects for the first couple weeks!
It's been about a week on 400mg of Pentox 3 times a day. I guess I'm one of the unlucky ones that has trouble tolerating this stuff. :P I'm going to try taking it twice a day. Hopefully along with the l-arginine, acytel-l-carnitine & vitamin E it will have some effect.
Chad
Or What the L You Doin' to My Digestive System?
I have a hard time, borborythmically (its kinda musical), with l-arginine. Also, different combinations of supplements produce, sticking with my melodic metaphors, different chords of upset. Try varying dosage, time taken, amount and type of food ingested with (if any), and other supplements.
These are some things I have tried. I'm sure you have some ideas on this yourself. I just had to find an excuse to use borborythm (or a form thereof).
Liam
I had a lot of digestive trouble with pentox at first. Now no problem. I seem to have gotten used to it, so my experience is that one learns to tolerate it. Initially I found that yoghurt helped control the digestive issues if I took the pills with yoghut.
---PJ
Cutting back on the Pentox to twice a day has really helped. I will probably try going back to 3 times a day in a few weeks.
Chad
Things like yogurt and aloe vera do magical things for the digestive tract! ;)
hi all!
i wondered what the experience on here was with pyrotab. i just ordered some for my boyfriend. thanks.
Reports on Pyrotab run about the same as vitamin e, colchcine, PABA, Epsom Salt and hydrogen oxide. Order him a VED instead. Try Pentox, L-arginine, and Viagra. These are some of the most promising treatments. Traction is the newest with some reported success.
GOOD LUCK
thanks liam. what is ved? are the other things you mention supplements?
laurie
Lars,
I would recommend you take a minute and read the thread regarding the VED, or even better, read the thread from the Highlights page where there are several threads that really highlight valuable information regarding this device.
This will give you a good overall explaination of several areas regarding this condition.
Blessings to you and your partner.
Christine
VED = Vacuum Erection Device
Pentoxifylline (brand name Trental) is a prescription drug for improving blood flow in the extremities (hands and feet). Lately it has been used for Peyronies Disease (in another extremity)
L-arginine is a supplement and a precursor to nitric oxide (needed for erections)
Viagra is the blue party pill ;) .
As you can deduce, the goal of these is to improve blood flow to the penis. The VED and traction (in different ways) work to reshape the plaque causing the curve. Oh yeah, traction is like a midevil torture device some sadist designed to increase the length of the penis. It is worn all day. Who knows if that works or if its worth it? It may, however, help Peyronies Disease.
As Chistine said, read the "HIGHLIGHTS'" page. Select HOME then scroll down under General Category, Child Board -Newly Diagnosed Highlights
Good Luck
Liam
Has anyone on the forum started using GPLC (GLYCINE PROPIONYL-L-CARNITINE) ? What effect if any are you having? And at what dosage. Thanks.
If anyone is using DMSO they may want to check this out.
http://health.yahoo.com/asthma-allergies-2007/asthma/1010/alternative-therapy-for-allergies-risks-vs-benefits
Quote from: meanmrmustard on May 16, 2007, 07:00:48 AMI actually had an experience that backs this theory a few months ago: for some other reason, I had to take antibiotics. the first night after I took them, I woke up with an almost 'perfect' erection, something I haven't had in years. However, even though I kept taking the antibiotics for 5 days, the improved erection didn't ocurr again. can anyone offer a plausible explanation?
most of you will remember my post, cited above, and the reactions it provoced. anyway, I never stopped thinking about that incident and possible reasons why it only happened one night and not in the subsecuent nights, until it struck me: in order to suffer less digestive-problems while taking the antibiotics, I stopped taking the other supplements after the first day of the antibiotics treatment. that realized, I took two pills of the antibiotic zithromax after a few days, and I took my usual dose of L-arginie, which is 3x 500 mg. the result was what I had been hoping for: a strong and naturally feeling erection, increased sex drive etc. - the result was better than what i had been achieving with cialis.
I couldn't continue with the antiobiotics cause it messed up stomach and intestines so bad that my digestive system stopped working. however, I'm still amazed by what happened and feel my suspicion, that theres some kind of inflammation or infect that prevents me from getting normal erections, confirmed.
will soon continue taking zithromax, as soon as I have figured out a way to protect my digestive system meanwhile.
Quotethe result was what I had been hoping for: a strong and naturally feeling erection, increased sex drive etc. - the result was better than what i had been achieving with cialis
Glad it works for you. Don't know how it could. Remember R I C E
Rest
Ice
Compression
Elevation :o 8) ;D
If anibiotics work, why not?
JUST KIDDING!
I participated in a long term study of azithromycin (zithromax) and erections was not a side effect listed - maybe we asked the wrong questions.
Azithromycin has strong anti-inflammatory qualities, but I doubt it could affect an erection quickly.
Previously, we have posited that you do not have Peyronies Disease or that the change in erectile quality proves the psychogenic nature of your problem. Have you done anything to check that out more?
Tim
Anybody has a few decent websites from where they order their supplements for Peyronie's Disease? Especially for Acetyl-L-Carnitine, L-Arginine and Vitamin E. Preferably from a European seller, but not necessary.
Thanks.
Quote from: wasa on June 17, 2007, 09:50:30 AM
Anybody has a few decent websites from where they order their supplements for Peyronie's Disease? Especially for Acetyl-L-Carnitine, L-Arginine and Vitamin E. Preferably from a European seller, but not necessary.
I know of no European sources but no one touches these prices in the United States plus Puritan tests out with good potency and purity. I have no connection with this outfit other than as a long time customer.
www.puritan.com
I agree with Hawk that Puritan's Pride is tops on both price and quality. But I would also recommend iherb.com. They are base in Los Angeles, but do ship to Europe. But Puritan's Pride would be your first choice since they have locations in both Switzerland and Austria.
http://www.iherb.com (http://www.iherb.com)
Quote from: myrddin on June 18, 2007, 09:03:17 AM
I had my latest checkup recently with my Urologist (Dr. Culley Carson, UNC Chapel Hill) and was able to report some improvement, so I thought I'd share the same info with my friends here too.
I've been on Pentox almost 9 months now, maybe it takes that long for it to kick in or something. (?)
Background:
At 2-3 months of Pentox, my condition (upward curve) continued to worsen slightly, and had developed a slight left-sideward deviation as well.
At 4.5 months of Pentox, my condition had stablilized but not improved.
Now at 8.5 months, I can definitively say that all sideward deviation is gone. My unit's perfectly centered when erect. The plaque on the side (where it used to curve left) cannot be felt anymore. Also, the upward curve is, in my subjective opinion, not as bad. Visually it does not seem as sharp an angle as I remember it was a few months ago. Intercourse has been easier lately and my unit does not seem to be as easily bendable, at the point of the curve, while erect.
All of this improvment has just occurred in the past 2-3 months. It may be just due to the Pentox, but I had also made a few changes in my Oral Supplements at that point in time. I replaced Arginine with Sann Vasoflow and tried a month on a PPC (Polyenylphosphatidylcholine)/SAMe regimen.
Now, FWIW, my current oral intake list looks like this:
On empty stomach:
Sann Vasoflow (2 pills per day)
ALC (500 mg 2x/day)
After meal:
Pentox (2 per day)
Now Foods Gamma-E Complex (2 per day)
Jarrow PolyPC (1000mg 2x/day)
RxOmega-3 Factors (1x/day)
Myrddin, Thank you so much for posting this! This is really encouraging. It has been really frustrating to me to see so many people get on Pentox only to quit it after a few weeks with "no improvement". I just have to wonder how many Pentox 'failures' are simply a result of people giving up far too soon. I am really convinced that Peyronies happens as a result of issues at the cellular level and that expecting Pentox or any other drug or supplement to bring about meaningful progress in a few weeks or even a few months is highly unrealistic. And by the way, thank you so much for detailing your supplement regimen. So thank you for sticking it out and making it to the light at the end of the tunnel. Please continue to keep us informed. We pray that this progress will continue to the point that things are completely normal. - George
FYI,
For those who are avoiding all supplements that could lead to increased collagen production (such as Lysine), I want to bring your attention to the fact that Whey protein powder (which many people use for muscle building) contains about 2grams of lysine per 25-30 grams of protein powder (about one scoop). This is quite a lot of lysine (I believe) and I think I will have to drop it from my supplements and look for a protein with an amino acid profile not so heavy on the Lysine.
Quote from: George999 on October 09, 2006, 12:22:31 AM
Also Hawk and I have been discussing Lysine a bit via private message. It seems that for reasons not completely understood. Lysine + Arginine has a different effect on the body than either one taken separately. The major point being that taking Lysine at the same point in time as Arginine blunts the effect of the Arginine and results in a different unwanted effect being potentiated. Hawk initially brought this concern up in a generalized way, referencing a very good link (see below), after I suggested that Lysine should be taken along with Arginine in order to suppress Arginase. Additional information seems to suggest that it also suppresses the desired NOS stimulant effect of Arginine as well. So now I'm not so sure about taking these two together, in fact I am suspending it at this point and am taking them separately instead. Hawk is apparently looking into this further. It will be interesting to see what he finds.
- George
You know, I think the key here is to not take them both at the same time together. Almost all body builders successfully combine Whey and Arginine without losing Arginines NO boosting effect. Arginine should always be taken on an empty stomach and be allowed to be assimilated before taking Whey or anything else as I understand the process. And, by the way, the absolute best form of Arginine I have found is SAN VasoFlow, which contains co-factors that significantly boost its NO effect by stopping Arginase dead in its tracks and perhaps even suppressing TGF-beta-1. For months I tried one Arginine supplement after another only to be disappointed (they actually made my blood pressure higher). Then I finally found the VasoFlow product, the effect of which I could immediately confirm with my lowered blood pressure readings. Recently, I tried to switch back to the conventional Arginine products (I had six nearly full bottles of different brands). Immediately my blood pressure went up. They are now all in the trash and I am reordering the VasoFlow product. I highly recommend it, but I would think twice about dropping the whey on the basis of the Lysine issue.
first I have to correct the name of the antibiotics. it's Ciprofloxacin NOT Zithromax. names are a little different here in spain, where I'm currently residing as an exchange student.
second, i have to say that everyone's sceptisism here was quite appropriate. I have taken the cipro/l-arginine combo again for 2 days, with reduced effect on the first day, and on the second day the only thing left was a fuller hang. so what happened is what always happens to me when taking supplements or drugs: good result at the beginning, with the effects wearing of within short time. BTW not even cialis is working for me anymore. it's like i was developing resistance for everything within amazingly short time.
no, i haven't had a possible psychological side to this checked out. I will, though i'm so sure it's physical. i mean i've had injections which were said to produce erections 99%. then i've had pain after sex for years, occasional pain also when doing nothing. hourglass, strange feeling testicles. in fact, the only time in recent years that I felt my package to be normal was the first 2 times after taking the antibiotic. my scrotum took a different shape, even when penis was flaccid, making that strange feeling go away, reminding me again how it used to be and is supposed to be. another strange observation: i applied an ice pack to my balls a few days ago, just to see what would happen - the penis filled with blood. will try that again soon.
have also been suffering swollen lymph nodes for years, particularly the ones in the groins, as well as cronic fatigue, which made me go for the infect/inflammation theory
i don't know what the next step could be, i'm growing desperate here. nothing left to check out
I am currently a co-investigator of Ciprofloaxacin in treating lung disease. It too has no known effect on erectile quality or erection. Never been reported.
Arginine may increase blood flow to the penis.
Placing ice on the testicles is not my preferred way to induce blood flow to the penis. I highly recommend having a woman place her hand there instead - not that works for me (usually).
The absolutely over-the-top oddity of what you report here makes it beyond absurd. My advice is to haul your ass into a therapist and get started finding out what it is that has you making strange observations and non-physiologic connections between events and your penis health. What next? That you stood on a street corner and a diesel bus drove by, and your penis got hard? And yet, strangely, that has bever happened with a gasoline powered vehicle!?
If you keep on trying out new things in your desire to get an erection without addressing the bizarre and irrational connections that you are making here, you are likely to do harm to yourself.
Tim
The supplement PolyPC is ddescribed as follows:
"PolyPC™ (Polyenylphosphatidylcholine), a specialized phospholipid, exerts powerful antioxidant activity on liver cells and protects against glutathione loss. Specifically, PolyPC™ contains polyunsaturated phosphatidylcholines which are more unsaturated than endogenous phosphatidylcholines. PolyPC™ is highly absorbed via the lymph and circulation and concentrates in hepatocyte (liver cell) membranes. High concentrations of unsaturated phospholipids, such as PolyPC™, have been shown to increase the activity of enzymes involved in lipid metabolism, i.e. lipoprotein lipase and hepatic triglyceride lipase.*
For optimum liver support, use in conjunction with Jarrow Formulas® Liver PF™, Alpha Lipoic Sustain™, or nutrients such as SAM-e (S-adenosylmethionine).
Take 1–3 softgels per day, preferably one with each meal."
Did you take this supplement to increase glutathione activity (Which I think of as a useful anti-oxidant)?
We have not discussed this supp much here - how did you come to chose to take it, if I may ask?
Tim
Quote from: George999 on June 19, 2007, 08:00:26 PM
You know, I think the key here is to not take them both at the same time together. Almost all body builders successfully combine Whey and Arginine without losing Arginines NO boosting effect. Arginine should always be taken on an empty stomach and be allowed to be assimilated before taking Whey or anything else as I understand the process. And, by the way, the absolute best form of Arginine I have found is SAN VasoFlow, which contains co-factors that significantly boost its NO effect by stopping Arginase dead in its tracks and perhaps even suppressing TGF-beta-1. For months I tried one Arginine supplement after another only to be disappointed (they actually made my blood pressure higher). Then I finally found the VasoFlow product, the effect of which I could immediately confirm with my lowered blood pressure readings. Recently, I tried to switch back to the conventional Arginine products (I had six nearly full bottles of different brands). Immediately my blood pressure went up. They are now all in the trash and I am reordering the VasoFlow product. I highly recommend it, but I would think twice about dropping the whey on the basis of the Lysine issue.
Hi George,
My concern was not really with rendering Arginine ineffective (although thank you for bringing that to my attention), it was more with the potential for boosting collagen production. I know there is some debate about this, but I can't see any way that having extra collagen co-factors could possibly help peyronie's whereas it most certainly could hurt.
Arginine works pretty well for me, but I have found that I have needed to increase my daily dosage from 3 grams to 4.5
I will check out VasoFlow.
I completely understand your concerns regarding collagen. I was actually taking Lysine for a while and stopped for this very reason. However, it is important to realize that the major factor with Peyronies is NOT how much collagen is being produced, rather, it is how that collagen production is being managed by the body. So while I think you have a valid point, I also think that we can get carried away with reducing the intake of things that *might* be supporting the Peyronies. I wouldn't be really so concerned about Lysine, since I would suspect that a whole range of foods you are probably consuming on a daily basis have significant Lysine content since it is a rather common nutrient. I would have to see a study indicating that Lysine is in fact a bad thing for people with Peyronies before I would be very worried about it. I still have the Lysine around and actually still take it on occasion. At first I was worried about it, but I have learned no to be too religious about it now. So if you stop taking the whey and after six months your Peyronies hasn't gotten noticeably improved, you can probably not worried about any negative effect from it. - George
MMM, 1) Taking Cipro like you are taking it, for ANY reason, is VERY unwise. Cipro is a very powerful front line anti-biotic and taking it recklessly can result in it not be effective for you in the future when you might really need it. EVEN if it IS helping you with your problem, it IS NOT a long term solution because continuing to use it will cause you problems that will be far worse than your stomach upset. So, for your own well being, STOP the Cipro. 2) Arginine is fine and VERY safe as long as it is not taken with certain other drugs prescribed for heart issues. SAN VasoFlow if you can get it is absolutely the best Arginine formulation hands down. Arginine may well help you with your perceived problem. 3) The way that men 'feel' about their erections tends to change as we get older. Thus, if we compare the way we feel now with the way we felt twenty years ago, it can seem mighty strange, but these changes are normal. 4) If your nighttime erections are normal, you likely do not have ED and really need to seek help on the psychological side of things as Tim has suggested. If your nighttime erections are NOT normal, you need to get that checked/rechecked by a urologist. 5) If you really do have swollen lymph nodes, you need to get that issue specifically checked by a doctor as well, BUT evaluating lymph nodes is very subjective and while they might seem swollen by your perception, they may actually be quite normal. 6) All of your anxiety over the shape of your scrotum and your flacid penis is really a huge waste of time on your part. These are just not the kind of things that typically indicate a disease state, unless they have a tire print on them or something like that. Pain is also not the best indicator of disease. As we grow older we all experience weird pains and, yes, these pains can sometimes occur in the penis or scrotum. As long as it is just a passing thing it usually means nothing. But your fixation on these things is what is disturbing and is an indication that you may need to look at the psychological side of the equation. There is a really strong / mind body connection and our mental state can easily suppress an erection with amazing success.
Quote from: George999 on June 20, 2007, 06:42:59 PM
MMM, ...4) If your nighttime erections are normal, you likely do not have ED and really need to seek help on the psychological side of things as Tim has suggested. If your nighttime erections are NOT normal, you need to get that checked/rechecked by a urologist.
I don´t have nighttime erections. have had only a handful of nighttime erections in the past years, one of them after taking antibiotic and l-arginine. but i see that posting symptoms in this forum isn´t the best way to get a diagnosis. will keep consulting professionals.
as to the connections that I draw, i know their hypothetical. but I don´t see the awkwardness of a possible connection between fatigue and ed - both came on about the same time, plus blood tests show how affected my immune system is with reduced white blood cells and a few other indications to a auto-immune reaction. general doctors haven't found the possible source of this immune reaction, at the same time my dick refuses to work, instead it does strange things, gives me pain and obtains strange looks and forms plus the swelling of the lymph nodes is present in various places, but far more extreme in the groins. whatever, will keep consulting professionals.
MMM - I would certainly hope that you have had an HIV test. I don't think HIV is likely, but if you haven't had it ruled out, you should. Your problem really doesn't sound like classic ED. Rather it sounds more like ED as a result of a deeper underlying condition. At this point, I wouldn't worry so much about the ED or dealing with the ED. You really need, instead, to do whatever is in your power to get the underlying systemic condition treated appropriately and once it is solved the ED will probably resolve on its own. Cipro is not the answer either. If your immune system is depressed, that could explain why the Cipro might help things. But you just can't take it long term except under STRICT medical supervision, and even then it would not be desirable. If you have actually got a measurable abnormality in your white cell count, you need the cause of that diagnosed and diagnosed as quickly as possible, so FORGET about the ED and deal with the obvious identifiable quantifiable problem. Having said that, there ARE nutritional things that CAN depress the immune system and white cell count. Zinc is one of them. Too much Zinc in your diet, more than 30mg per day on a sustained basis can wreak havoc on your immune system. There are probably other potential culprits out there. On the other hand there are nutritional items that can SUPPORT your immune system. One of them is Vitamin D, AT LEAST 1000mg per day. Also, simple things like Vitamin C, Garlic (sustained low level antibiotic effect). But in any case, you need to see an immunologist if necessary to deal with the cause of the white cell problem. That is the red herring that really needs to be investigated, along with the lymph gland thing. - George
thanks for your advice George. I'm seeing a general practitioner tomorrow.
don't understand why zinc is so bad though - I actually bought a zinc supplement yesterday because I read that zinc defiency is often associated with ED as well as with fatigue.
not sure whether and how the fact that my ED is the result of an accident, in which my penis was bent sharply in my pants, fits in. it started off as the penis not getting as hard as before and the almost immediate loss of nighttime erections and got worse and worse over the years. could be that the accident triggered it and an underlying immune problem prevented the healing of a lesion. the fact that there was no blood or swelling involved in the 'accident' always startled physicians and lead them to claim that it didn't sound like a penis trauma.
hopefully I'll soon know more.
MMM - I STRONGLY suspect that in your case the link between your 'penis incident' and the symptoms you are experiencing is purely coincidental. A lot of times we can have diverse physical issues that seem to converge at the same time and we tend to want to make sense of that. Part of the job of the doctor is to sort out the facts from the coincidences which can be a quite a project. But you need to start with what you KNOW is wrong and see what falls together AFTER that issue is resolved. At this point you apparently KNOW there is a problem with your white cell count. You need to hit on that and hit on it hard until it is diagnosed and treated. THEN see what happens with the other issues. Don't automatically conclude just because certain things occurred at around the same time that there has to be a cause and effect relationship. Doing so is one of the major pitfalls of attempts at self diagnoses. I KNOW from PERSONAL experience, I have made this mistake many times. - George
MMM - THE RIGHT AMOUNT OF ZINC (and also copper) reinforces the immune system. But getting too much Zinc can actually be bad for the immune system. If you have not been taking supplemental Zinc, your problem is not being caused by Zinc. I just brought it up because too much Zinc CAN cause immune problems. I personally was getting oral thrush which is indicative of depressed immunity and lowering the amount of Zinc I was taking solved the problem. In your case Zinc might even be helpful since you might be deficient in Zinc which can also cause this type of problem. Just don't take excessive amounts of it. But you really need your doctor to try to find out what is going on because it is just not a good thing to be walking around with white cell issues. They can be an indication of an underlying problem that needs to be identified and dealt with before it becomes too serious. - George
As per Doctor's recommendation ( https://www.peyroniesforum.net/index.php/topic,35.msg10250.html#msg10250 ) I will be looking to buy some 400UI Vitamin E. Having already read a majority of the posts here on Vitamin E, I have a few remaining questions before I go decide which Vitamin E to get.
1) When you guys use terms like "full spectrum" or "broad spectrum," you mean a Vitamin E mix that has all 8 types of Vitamin E (the 4 tocopherols and 4 tocotrienols), correct?
2) I've also seen the words "high gamma" and "full gamma" used in the forum. What does that mean and how is it different from gamma?
3) What is the ideal ratio of tocopherols to tocotrienols?
4) I've seen George999's post ( https://www.peyroniesforum.net/index.php/topic,22.msg7415.html#msg7415 ) recommending a variety of good Vitamin E options. I wanted to ask more specifically, what are the very very best Vitamin E options out there. Or if there is one particular brand/formulation that is easily the best choice.
Thank you for any info!
best,
Daniel
Quote from: George999 on June 21, 2007, 10:04:26 PMBut you really need your doctor to try to find out what is going on because it is just not a good thing to be walking around with white cell issues. They can be an indication of an underlying problem that needs to be identified and dealt with before it becomes too serious. - George
thanks again. will have another blood test this monday, doc said if the results are more or less the same she'll send me to an internist
BTW, 9 times out of 10, white blood cell issues go away on retesting. There is often a fluctuation in WBC counts.
Tim
Hey Daniel,
Thats pretty awesome news from the Doctor. I'd agree it seems strange that you are spontaneously healing after 5 years, but who cares if its strange, its a good thing! From the research I have done, MegaFood Full Spectrum Vitamin E containing the 8 types of Vitamin E (the 4 tocopherols and 4 tocotrienols), seems to be one of the best out there.
Here is a link so you can see the exact amounts of each tocopherol and tocotrienol.
A lot of full spectrum vitamin E's out there don't tell you how much of each you are getting besides the d-alpha. The other thing is this product is expensive. Its around $60.00 a bottle, so if you don't mind the spending a lot of money, its probably worth it. You should be able to find it at any health food/vitamin store.
http://www.megafood.com/products/nutritionaltherapeutix/vitamin_e_complete_8_400_facts.php
Daniel, The term "High Gamma" is really just a marketing term. All of the major vendors of "Full Spectrum" E products tend to follow the same ingredient spectrum. The major component is the traditional Alpha Tocopherol, followed by a similar amount of Gamma Tocopherol, with trace amounts of the other six components. This is generally for two reasons: 1) I follows the formula by which these nutrients typically occur in a natural setting, and 2) The major two ingredients are the ones known to be the active components. Alpha Tocopherol is a major anti-oxidant protecting against Oxygen Species Radicals and Gamma Tocopherol is a major anti-oxidant protecting against Nitrogen Species Radicals. So these two play well together and form a more complete anti-oxidant shield. There are a number of brands many with slightly different approaches in terms of formulation. I am not sure it is that easy to quantify which might be better than another. The pricing runs all the way from bargain basement to fifth avenue. So choose your poison. It is usually worth it to pay for a quality product, but then once you get out to the very high end, you are usually wasting your money, in spite of the marketing hype. I am generally reluctant to pay premium prices UNLESS there are reputable peer reviewed studies backing up the claims. Myself, being somewhat of a cheapskate, I use the NOW brand High Gamma E. Both NOW Foods and Puritan's Pride generally produce high quality and affordable at the same time products. But there are other good vendors out there.
Tim,
I started by noticing how PPC and SAMe were mentioned here (http://www.nature.com/ijir/journal/v14/n5/full/3900873a.html) as a potential treatment for Peyronie's. Then I found here (http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&dopt=abstract&list_uids=12024107&query_hl=13&itool=pubmed_docsum) that DLPC was "the main phosphatidylcholine species of PPC." This led to more studies showing positive results (here (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=16448461&ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum) and here (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=16996477&ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum)). But these studies were only about treatment of liver cirrhosis, which the American Heritage Science Dictionary defines as "A chronic disease of the liver characterized by the replacement of normal tissue with scar tissue and the loss of functional liver cells."
To me, that sounds a lot like a liver with Peyronie's. So I first experimented for a month with Source Naturals PPC and NOW SAMe. My condition did improve about that same time, but who can really say why? It could just be the Pentox. Currently I'm using PolyPC with no SAMe (too darned expensive) and will probably try a couple more variations of this recipe until I'm convinced it does no good.
PainIsGrowth,
Thank you for the recommendation. That MegaFood Vitamin E certainly looks very good, highest mixture of tocopherols and tocotrienols I've seen. But it certainly is quite expensive. I'll have to pass on it.
George,
That's some really exceptional info. Thank you for your great answers as usual!
I've decided I'll get GNC's Isomer E ( http://www.gnc.com/product/index.jsp?productId=2133477&cp&sr=1&origkw=isomer+e&kw=isomer+e&parentPage=search ) from their website. With the GNC name recognition and George's mention in another post of his about Isomer E, I think it'll be a good choice. While I was googling it, I came across this post on a forum ( http://supplementcentral.com/forums/printthread.php?t=3423&page=1&pp=20 ): "...IsoMer E GNC brand is cheaper than Pinnacles. Pinnacle and GNC together deveolped IsoMer E and are currently the only companies that sell IsoMer E (a truly superior version of Vitamin E)." Course it's just one user's post--could be fact or opinion. Would anyone happen to know anymore about GNC Isomer vs. Pinnacle Isomer? Thank you again!
Quote from: myrddin on June 22, 2007, 03:20:00 PM
Tim,
I started by noticing how PPC and SAMe were mentioned here (http://www.nature.com/ijir/journal/v14/n5/full/3900873a.html) as a potential treatment for Peyronie's. Then I found here (http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&dopt=abstract&list_uids=12024107&query_hl=13&itool=pubmed_docsum) that DLPC was "the main phosphatidylcholine species of PPC." This led to more studies showing positive results (here (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=16448461&ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum) and here (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=16996477&ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum)). But these studies were only about treatment of liver cirrhosis, which the American Heritage Science Dictionary defines as "A chronic disease of the liver characterized by the replacement of normal tissue with scar tissue and the loss of functional liver cells."
To me, that sounds a lot like a liver with Peyronie's. So I first experimented for a month with Source Naturals PPC and NOW SAMe. My condition did improve about that same time, but who can really say why? It could just be the Pentox. Currently I'm using PolyPC with no SAMe (too darned expensive) and will probably try a couple more variations of this recipe until I'm convinced it does no good.
myrddin, Thanks for the additional info. In my book anything that has been demonstrated to be effective against ANY kind of fibrosis is of interest and has potential for Peyronies. The improvement you are seeing could be from the Pentox, or it could be from the supplements, or more likely, it could be from some combination of the above. Pentox is KNOWN to be effective against Peyronies. The larger question is what supplements can be added to be mix to enhance its benefits? I am convinced that Full Spectrum E is one. But you are certainly making a good case for PPC and SAMe with the connection to Cirrhosis. NOW has to be one of the most reasonably priced vendors of SAMe. - George
PS - Great Links!!! :o
Get a capsule and not a dry vitamin E. And think about taking it with some fat, to enhance absorbtion.
Tim
QuoteAnd think about taking it with some fat
Bluebell Praline Ice Cream
I knew it was good for me ;) :)
I FELT ONE PLAQUE BEFORE 12 MONTHS FROM NOW. FIRST I TOOK 12GRM POTABA POWDER A DAY FOR 35 DAYS. AFTER I CHANGE MY URO., HE CANCEL THE POTABA AND PRESCRIBED ME TRENTAL ,COLCHICUM, E VIT, CIALIS. I WAS ON THIS FOR 7 MONTHS. DURING THIS TIME WHEN I GO TO MY DOCTOR FOR CHECK HE DID INJECT FOR SEE THE DAMAGE BUT AFTER INJECTION I FELT ANOTHER PLAQUE. SO NOW I HAVE TWO PLAQUES
, NO CURVATURE BUT TO COME DOWN AROUND THE RING OF PLAQUES.
LAST MY URO. TOLD ME THAT FROM NOW IT IS VERY DIFFICULT TO RESOLVE THEPLAQUES AND YOU ACCEPT THIS SITITATION. I ASK FOR MANY OPTIONS TO DO BUT TOLD ME THAT NOTHING HAVE TO DO JUST TAKE E VITAMIN.
NOW I HAVE ALREADY POTABA THAT I BOUGHT BEFORE , CAN I TAKE IT??IF YES THE DOSAGE MUST BE 12GRM A DAY?? CAN I ADD TRENTAL OR L-ARGININE ON IT ??
MASSAGE TO THE PLAQUES DIRECTLY BY FINGERS IS GOOD ???
TO SEAT IN A HOT WATER IS GOOD ???
ANYTHING CAN BE HELP TO ME BECAUSE PASSED ONE YEAR
THANK YOU FROM NOW BYE BYE
Quote from: George999 on June 22, 2007, 06:30:46 PM
But you are certainly making a good case for PPC and SAMe with the connection to Cirrhosis.
George,
A noteworthy read on the similarities between Peyronies and Cirrhosis can be found here (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=10728799&ordinalpos=9&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum). It details many treatments for cirrhosis (including more info on PPC and SAMe) and makes this interesting statement:
QuoteIn addition to antioxidants (such as PPC, silymarin, alpha-tocopherol and selenium), anti-inflammatory medications (corticosteroids, colchicine, anticytokines) are also being tested as antifibrotics.
Anyone who's been on this forum for a while can easily recognize that most of those treatments have been recommended or tried as Peyronie's treatments. Also noteworthy in the article was this bold claim regarding PPC:
Quote... its dilinoleoyl species (DLPC) increases collagenase activity
I'm not sure how they came to that conclusion but it sounds like a good thing.
So I guess my point is just that there seems to be enough similarities with Peyronie's to warrant paying attention to any research currently being done on treating alcoholic liver disease/cirrhosis.
Nectar,
1 ) Please don't use all caps, its not considered polite to do that.
2 ) The medications you have been prescribed make sense. The Potaba did not seem to be working, so your Uro moved you to Trental (Pentox is the generic form of Trental) plus some others.
3 ) DO NOT combine the Potaba with the Trental combination without your doctors express consent.
4 ) Trental is absolutely the best drug for Peyronies, but seven months is not nearly enough time for it to work. It is NOT too late to resolve the plaques, you need more time on the Pentox.
5 ) You should continue with the Trental/Colchicum (Colchicine)/Vitamin E/Cialis under your Uro's supervision. Do NOT take Potaba UNLESS your doc says its OK.
6 ) The best form of Vitamin E is the full spectrum kind that contains all eight sub-forms. The Vitamin E should at least contain both Alpha-Tocopherol AND Gamma-Tocopherol.
7 ) L-Arginine would be a good addition to this regimen, but check with your Uro first. SAN VasoFlow is the absolute best L-Arginine formula on the market.
8 ) Gently massaging the plaques will not hurt and may help. Very warm water (especially with epsom salts) may help. I would NOT use uncomfortably hot water.
9 ) It would be helpful to know were you are located and who your doctor is. The fact that your doctor knows about the Trental indicates that he is familiar with Peyronies, but to cut it off at seven months seems a bit soon. In most of the world, generic Pentox is available at a lower price than Trental and it should work just as well. From what I have heard, two or three years on the Trental/Pentox would be more realistic.
Sincerely,
George
George999, which Vit. E do you recommend from Puritan if I may ask, since you seem to have good knowledge about it :)
quote removed (repeated an entire post)
Hawk
wasa, My recommendation of Puritan was as a vendor in general, not necessarily as a vendor of Vitamin E. At this point they do not appear to have a Vitamin E product which meets my expectations of at least 400IU of Alpha Tocopherol + 300mg of Gamma Tocopherol. Other vendors like GNC, VitaminShoppe, and iherb do carry such products. - George
They do have this product that has 400 IU or 1000 IU of vitamin E as Alpha Tocopherol plus d-Beta, d-Gamma, d-Delta Tocopherols) but it does not breakdown the amounts of these individual Tocopherols.
http://www.puritan.com/pages/file.asp?xs=5461C2B000304511BD43F5014C78E1A5&CID=103&CPID=88&PID=852
DEAR GEORGE,
I AM FROM TURKEY , AND HEARD ABOUT DETAILS OF Vitamin E is the full spectrum kind that contains all eight sub-forms AND TRY BEFORE BUT CAN NOT FIND IN MY COUNTRY(SOLGAR 400 NO OTHER FORM). BUT AFTER I HEARD FROM YOU THAT THIS POINT FOR E VIT. IS IMPORTANT SO I WILL CHECK AGAIN MAYBE BUY FROM ANOTHER COUNTRY.
ALSO I WILL START TO TAKE TRENTAL 3X400 A DAY. ANYWAY TRENTAL WITH VIT E IS ENOGHE OR I MUST ADD COLCHICUM ALSO??????? IN WHAT DOSAGE ???
FOR CIALIS , I WAS TAKING 2 TABLET IN A WEEK , AFTER DAY I TOOK HAD A STRONG HEADACHE SO CAN NOT GO ON MORE THAN 3 MONTHS. SO NOW WHAT AM I DOING FOR CIALIS , IS IT IMPORTANT FOR ADD IT ???
I WANT TO KNOW THAT ANTIBIOTICS CAN HELP FOR PEYRONIE ???
THANK YOU FOR YOUR REPLY AND BYE WITH MY BEST REGARDS ,
Try taking 25 mg Viagra a night instead of Cialis. I get very very very bad headaches, too. This should help stop the headaches.
Please MAKE YOUR LETters small, my friend. It will help us read your posts. :)
Thanks,
Liam
Nectar, of all of the medications you have mentioned, the one that is really KNOWN to be effective against Peyronies is the Trental also known as Pentoxifylline. That is the most important drug for you to be taking.
The best place for you to look for the Vitamin E would be locally in Turkey. GNC's Isomer E http://www.gnc.com/product/index.jsp?productId=2133477&cp=2626023.2108437&parentPage=family (http://www.gnc.com/product/index.jsp?productId=2133477&cp=2626023.2108437&parentPage=family) is a good product and if your GNC stores in Turkey don't carry it they may be able to special order it for you. GNC has a number of stores in Turkey: http://www.gnc.com/corp/index.jsp?page=storeLocator&countryName=Turkey&country=TR (http://www.gnc.com/corp/index.jsp?page=storeLocator&countryName=Turkey&country=TR)
The second option would be to order internationally from iherb.com http://www.iherb.com/info/shipping/ShipOtherCount.aspx (http://www.iherb.com/info/shipping/ShipOtherCount.aspx) in Los Angeles CA USA. NOW FOOD's Gamma E http://www.iherb.com/ProductDetails.aspx?c=1&pid=299&at=0 (http://www.iherb.com/ProductDetails.aspx?c=1&pid=299&at=0) is also a good product and is available from iherb.com.
Wishing you the best,
George
Hi
I was reading about pycnogenol and came across this " Some evidence suggests that OPCs protect and strengthen collagen and elastin. Theoretically, this could mean that OPCs are helpful for aging skin , and they are widely sold for this purpose, but there is as yet no direct evidence that they work". Do you think this means I should take or stay away from this?? Alan
Pycnogenol and OPCs are very good for you. They are expensive. I have been taking them for some time now with no evidence whatsoever that they have made my Pyronies either better or worse. Theoretically they should be helpful. - George
Thanks George. I was just concerned that they may increase collagen. I thought this is part of the problem with peyronie's. Also confused esp that it may increase elastin- something I thought helpful. Alan
George , I bought the vitamin e " 200 iu as d-alpha tocopherol plus d-beta tocopherol , d-delta tocopherol and d-gamma tocopherol " which came to my country from solgar just a week ago.
I am still on vitamin e " 268 mg. ( 400 iu ) as d-alpha tocopherol plus mixed tocopherols " form solgar 2x a day.
Now I want to know that , I must take them together ??? and in what dosage I must take ???
Anyway I orderred isomer e vitamin from gnc/usa by one of my friend who live there , also in what dosage I have to take isomer e after stop the solgar e vtamins ???
thank you from now bye.
Nectar, When you ask about dosage, these are really questions that should be asked of a doctor. I am currently taking 800IU of Alpha Tocopherol plus the other Tocos included in the complex, BUT I am NOT taking Trental along with it. That can make a difference because both Trental and Vitamin E have an effect on blood clotting and if you get it wrong you can have a bleeding problem which can be dangerous. ONLY your doctor can advise you on what are safe levels for you based on what else you might be taking. You really need to talk to your doctor about this question. - George
Alan, The problem with Collagen is not really with the amount of Collagen produced, but with how the body is processing Collagen at the local level. You have HEALTHY Collagen processes going on all over your body. You shouldn't be focusing on the localized problem to the degree that you risk starving out those healthy processes. It is the localized dysfunction that needs to be addressed, not the raw materials that happen to be involved in the process. - George
I haven't seen many postings on problems with Pentox, but I am having a tough time with tolerating it. The main problem is the tremendous acid reflux it causes me, so much so that I'm gagging & coughing all day while taking it. I'm susceptible to Bronchitis. I stopped taking L-Arginine, Acetyl-L-Carnitine & Pentox together for a couple of weeks and experimented taking each separately. Pentox sets it off after a couple of doses.
My general practitioner gave me Protonix for the reflux which helps, but not enough to stay on the Pentox. I've scheduled an appointment with a GI Doctor. :( I feel like I may be missing a window of opportunity as I am going through the Verapamil injections. I'll be finished with them in October.
I don't want to discourage anyone from trying Pentox, everyone's body reacts differently. I'm just curious if anyone's had a similar experience and if they were able to work through it.
Chad, Sorry to hear you are having the acid reflux problem. I sincerely hope that the Protonix is helpful to you. It is good that you are getting your GI tract checked out. The one thing I can tell you is that weight loss is often one of the most effective strategies in preventing acid reflux or GERD. However, if you are skinny as a rail, there may be something else going on that would make you susceptible to this problem and you definitely should have it investigated. But I suspect that things like acid reflux are common problems that people have with a wide scope of medication. Another thing that I have found helpful with medication induced stomach upset in general is aloe vera gel. Since the lower GI tract can also cause this problem, probiotic bacteria such as that found in yogurt might also prove helpful. In any case, I wish you the best! - George
What oral drugs/OTC supplements increase blood flow/circulation without thinning the blood? I believe L-Arginine would be one. Thanks for your help.
Quote from: Joshua on September 17, 2005, 10:34:37 AM
What new topics do you want added? Please post new topic requests here.
First, I am a newbie here. I am a bit confused by the organization of the board - seems like everything is being crowded into a handful of threads, which get extremely long and hard to follow as they flow backwards (ah, well!). I also do not have the board permissions to start a new thread. So I will add my comments here.
I had a recent painful experience and thought it might be peyronies disease. After getting one diagnosis from my MD and another from a urologist, it now seems it is some kind of muscular/vascular issue, and not peyronies. But I had a few sleepless nights and did some research, will toss these ideas out.
1) Vitamin E should be tried topically. Verapamil is used topically for this disease, as this method results in higher levels at the affected site with a lower total body exposure, fewer side effects. I once was exposed to a lot of sun and knew I was going to burn. I took a vitamin E capsule orally, and then punctured a few capsules and rubbed the (very sticky) oil on one side of my body. The shoulders, back, neck and ear on the side that got vitamin E were fine the next morning. The other side was bright red and painful. The oral dose of E might have helped some, but the topical dose was dramatic.
2) In a paper on the genes that are over-expressed in peyronies, endothelin/angiotensin were mentioned as a possible area where intervention might help. I know from my high blood pressure days that the red/blue/purple pigments in Hibiscus tea are fairly good angiotensin inhibitors. A tea made with 10 grams of the flowers in 500 ml water has been shown to normalize blood pressure when an up-regulated angiotensin system is the cause. Other angiotensin inhibitors can be found in some hydrolyzed fish and dairy products (dipeptides and tripeptides). And of course, there are prescription ACE inhibitors. Any one try those?
3) TGF - Was just researching Cordyceps and found a study that shows that a cordyceps/astragalus combination lowers TGF production under some circumstances. http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17565873&ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum PubMed Citation (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17565873&ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum%20PubMed%20Citation)
4) For the DIY crowd, I have been cross indexing the scientific research for a thousand or so herbs against a few thousand diseases, conditions, and metabolic pathways. I just ran peyronies as one of the diseases, unfortunately, no hits there. But if you are interested in collagen synthesis and some of the other genes known to be up regulated, it may be of interest. The site is www.shrubmed.com (http://www.shrubmed.com) - still in flux, far from finished, but might have some useful information.
5) There are more than a few studies on proteolytic enzymes reducing TGF - bromelain (from pineapple) is a good example. Worth a look at PubMed.
Post moved to appropriate topic.
This will help you!
Go to :
Profile/ Modify profile (left column)/ Look and Layout preferencesCheck these two:
Show most recent posts at the top.
Show most recent personal messages at top. Also, I enjoyed your post and links (ShrubMed- love it :) ). I believe it would have been a tidy fit in the
Oral Treatments - Vitamins, Prescriptions , Herbs, Supplements topic. The topics are "pre-chosen" to direct areas of discussion related to Peyronies Disease. You will find a great deal of freedom to say what you want, though.
When all else fails, go to
" Open Questions" or
General Comments. Our search function is also a good tool.
I will move these to the above mentioned topic later.
Welcome,
Liam
Post moved to appropriate topic.
Welcome aphro!
Most comments will indeed fit under a preexisting thread. The number of threads/topics is somewhat limited due to the maintenance overhead required from an administration point of view. But comments submitted do not have to fit the thread in which they are posted 100%. General compliance is acceptable. A really diverse post could go under the
General Comments topic. The post you have just submitted here would probably fit nicely under the
Oral Treatments section since that is the core of your content.
As for your suggestions, here is my take:
1) Topical application of Vitamin E. In my experience it can be helpful, but not helpful enough to justify the effort. For things like sunburn topical Vitamin E is very useful. So is Aloe Vera. But I tried using it for Peyronies with no significant improvement. 8)
2) The angiotensin connection. I was actually hypertensive and taking a potent angiotensin drug when I contracted Peyronies and have since stopped taking it, so I doubt that angiotensin drugs would be significantly helpful. :-\
3) TGF-beta-1. This is certainly interesting. I didn't know this about Astragalus. (Gingko Biloba inhibits TGF-beta-1, I am taking it now and not finding it significantly effective ... also the angiotensin drug I was taking was a TGF-beta-1 inhibitor, but was not noticably helpful) But Astragalus is something that I have been considering for reasons other than Peyronies. I will definitely keep this in mind. :)
4) shrubmed.com - Thanks - nice cross reference which plenty of potential. :D
5) Bromelain. I've taken it and found it to be not significantly helpful. :P
The most helpful thing for me has been oral full spectrum Vitamin E. At this point, I have found that increased sugar intake makes the Peyronies worse. Based on that I am pursuing a course of attacking serum glucose and insulin levels.
But thanks again for posting and for taking the time to share your thoughts.
- George
Post moved to appropriate topic.
Quote from: George999 on August 02, 2007, 06:15:53 PM
Welcome aphro!
...
The most helpful thing for me has been oral full spectrum Vitamin E. At this point, I have found that increased sugar intake makes the Peyronies worse. Based on that I am pursuing a course of attacking serum glucose and insulin levels.
...
- George
Post moved to appropriate topic.
RE: blood sugar.
Just came across this while tidying up Shrubmed. I have found that my panic disorder can usually be shut off by a few days of very low carb diet, followed by a Mediterranean style diet with moderate amounts of carbs from fruits and vegetables, little or no grains and sugar.
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17664181 (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17664181)
That is a great find aphro. Excessive serum glucose levels stimulation TGF-beta-1. Why am I not surprised. Also interesting comment about panic disorder. I overcame panic disorder by using Aloe Vera soft gels. And Aloe Vera is known to target precisely those processes. The root of this problem and many others is known as Metabolic Syndrome. You are doing the right stuff to kill Metabolic Syndrome. The term used most commonly is not "low carb" diet, but rather "low glycemic" diet. There are also other interesting supplements that have significant potential in this regard, such as forskolin, sesamin, cla, and fish oil. Metabolic Syndrome happens when the liver can no longer keep up with the flow of triglycerides and begins to do some strange things. Some people are genetically more susceptible to this than others because their livers have a reduced capacity to supply the necessary enzymes to break down fats. It is all very fascinating how this simple dysfunction can have a destructive effect in so many ways on our bodies from hypertension to diabetes and beyond. And there is definitely a link to fibrosis and this link you have provided highlights that fact. - George
Interesting links, Aphro - and welcome to the boards.
"1) Vitamin E should be tried topically."
I think the problem is penetration into the tissue. The verapamil study that looked at penetration with iontophoresis demonstrated that it did enter, but that it was quite variable. OTOH, I know of no data that demonstrates that verapamil enters the tunica. If one could link vitamin E to something that crossed cell layers (like DMSO) then it might get in. You experience with sunburn relates more to the surface of the skin itslef - not deeper structures.
2) Re: angiotensin inhibitors - I have not tried any, nor do I know of any data on them. That makes some sense, but the furstrating thing about this field is how many things that make sense that do not turn out to help.
3) TGF - I have not tried that fungus preparation yet, but it sure sounds intriguing. I have used other "tonics" from China unsuccessfully,specifically Maitake mushroom extract.
4) The site is www.shrubmed.com - is a great find, Thanks!
5) My concern for all of the orally taken agents is to what degree they are inactivated in the stomach such that they are no longer active. I have tried bromolein, but it's lack of efficacy for me does not mean it may not work for others.
Tim, and welcome again.
Toona sinensis Roem (Meliaceae) leaf extract alleviates liver fibrosis via reducing TGFbeta1 and collagen.Fan S, Chen HN, Wang CJ, Tseng WC, Hsu HK, Weng CF.
Institute of Biotechnology, National Dong Hwa University, Hualien 974, Taiwan.
Toona sinensis Roem (TS) leaf tea as a health food for the improvement of blood sugar and hypertension has been demonstrated. Thioacetamide (TAA), a hepatotoxin, causes the progression of liver fibrosis. In this study, we tested the effects of TS leaf on TAA-induced liver injury. TAA (200mg/kg Bwt/3 days, i.p.) treated rats were orally administrated with TS leaf extract (1g/kg Bwt/10 days) three times. After 30 days treatment, the morphological data showed that TS leaf extract given to TAA-treated rats had less liver fibrosis. The GOT/GPT, collagen 1 and collagen 3 mRNAs of livers in TAA-treated rats were elevated when compared to normal rats. The improvements of GOT/GPT, collagen 1 and collagen 3 mRNAs were shown in the TS leaf extract given to TAA-treated rats. TS leaf extract given to TAA-treated rats showed higher levels of cytochrome P450 (1A1, 2A and reductase) than those of TAA-treated rats. Compared to the TAA-treated group, TGFbeta1 mRNA (RT-PCR) was decreased with an increase of TGFbetaR1 protein (western blot) in the TS leaf extract given to TAA-treated rats. The decreased tendency of FGFR2 was found in the TS leaf extract given to TAA-treated rats. The result implies that TS leaf possesses beneficial effects on liver injury through increments of detoxification and the metabolic pathway.
PMID: 17629604 [PubMed - as supplied by publisher]
Source: http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17629604&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
Can anyone give me some feedback as to wether Gamma Linoleic Acid (GLA) is good or bad for Peyronie's? GLA supplements come in the form of Evening Primrose Oil, Black Currant Oil and Borage Oil.
I have read GLA increases production of Prostaglandins -- is that a good or bad thing? Do Prostaglandins increase fibrosis or decrease it?
Just curious if one should take GLA in addition to Omega 3s (fish oil).
Cheers.
You might want to read the latest posts in the "Open Questions" thread which cite research noting that PGE1 is perhaps beneficial in its effect on Collagen synthesis. I think it very likely that ALL of these beneficial oils are being neglected in our societies mad rush to eliminate fat from the diet. I believe that good balanced EFA supplements are, on balance, beneficial when it comes to dealing with Peyronies, but I wouldn't take excessively large amounts of them and I wouldn't take just GLA in isolation. Fish oil, flax oil, CLA, ALA, GLA, these all have benefits for health in reasonable amounts. - George
After a year on the following supplements, I regret to report that there has been no improvement in my Peyronies Disease - in fact I think it has worsened slightly:
Acetyl carnitine/alpha lipoic acid
L-arginine
Gingko Biloba
Ginseng
Maca
Sunflower seeds
Cod liver oil
They seem to have caused me to put weight on, so I am discontinuing most of them.
Sorry to report a negative, but I'm afraid that's how it is.
Regards,
Percival
Has anyone ever heard of Vitamin E making peyronie's worse? My Urologist is going to make me wait a month before I can see him, and I figure maybe one of y'all will know. Every time I take 400 IU of VitE, within the next day or two the plaques causing the major bend get harder and more noticeable, and when I stop taking the E they seem to return to normal (though there are flareups and gradual worsening).
Also, what about topical VitE carried through the skin via DMSO? Would that get deep enough to soak into the fibrotic tissue?
Percival,
I am so sorry to hear of your Peyronie's getting worse. Despite the feverish activity on this board, the reality is that most of us do not get much better or get worse. It is a depressing thought.
I am (or have been) on many of the same things. I do note one thing - coming off of some of them seems to be associated with getting worse - so it is possible that the supplements were keeping you better than you would have been. So keep an open mind to that possibility and pay close attention when you stop.
For me, the only thing that has really worked is the VED - it has reduced the curvature a bit and I am certain slowed the shortening and bending process. However, the progression for me has meant getting dents instead of curves. I'll take a dent over a bend any day, but it is pretty hard to take. I may need to start testosterone replacement, and will also start Pentox - so hope springs eternal.
Tim
Percival, Sorry to hear that you are not doing so well. I really do not see anything on your supplement list that could be making matters worse OR causing you to gain weight. I am taking everything you are taking except the Ginseng, Sunflower Seeds, and Cod Liver Oil, and I have had little problem losing weight in the process. Some of these supplements you are taking such as Ginseng, ALC, and ALA are actually taken by people to induce weight loss. So it is very likely that other dietary items are driving the weight gain you are experiencing. The only supplement I would advise caution with is Cod Liver Oil. It can contain fairly large quantities of Vitamin A and too much Vitamin A can be seriously toxic, as in you can die from it. So do be very careful with that. Fish Oil and Flax Oil are much healthier options for the long term. - George
Ocelot, Vitamin E has a longstanding reputation for making Peyronies better. While I have heard reports of it being ineffective, yours is the first that would imply that it might be detrimental. But my gut feeling is that that might be possible to happen if you are taking only the Alpha Tocopherol form of Vitamin E. The reason is that it is suspected that taking only the Alpha Tocopherol form can actually deplete the other seven forms of Vitamin E. That is why it is really better to take a natural, full spectrum form of Vitamin E for Peyronies. - George
Tim, Great to hear of your progress with the VED. I would trade in a curve on a dent any day! Of course neither one is desirable, but dents are much more practical in day to day life. ;)
I need a little input please. My general MD gave me a prescription of Potaba. I asked for Pentox but he said lets try some Potaba first. Since I do not have insurance I checked the cost of the Potaba before I had it
filled. ( I almost fell over at the cost for a 30 day supply ) Too much for me. Can someone give me a idea of the cost of the Pentox for a 30 day supply and the best place to get it without insurance?
I think that you are much better off with Pentox (in combo with arginine and a Peyronies Disease E5 inhibitor) but if you go with Potaba go with the generic form Aminobenzoate Potassium. I have no clue on the cost but is bound to be cheaper. Hope Pharmaceutical sells it on line. Remember this is an old drug for Peyronies Disease without impressive results other than gastric upset.
Thanks Hawk: I wanted to go with the Pentox but my doctor wanted
to try the Potaba first. I'm going to advise him it is too costly for me.
Is the Pentox sold on line? Is there a generic? Any idea of cost?
Thanks
Musicman:
In the FWIW department to you, I took over 13,000, yes thousands of potaba with the only results being gastric problems. My uro at the time wanted me to go with the long term schedule of potaba, but we finally gave up. 24 tablets a day for oh so many days! Ouch!!!!
So, if you can get your doc to go with Pentox, you would be better served.
Old Man
Musicman, Pentox IS generic. The patent form is Trental which is now just a more expensive version of Pentox (Pentoxifylline). - George
I'm been actively trying to fight back this horrible condition for the last 6 months of my life. I cannot thank this forum enough for providing me support and valuable information about types of peyronie's, fibrosis, and e.d. I thought I would give back everyone, and maybe help out some new people, by sharing with everyone what has worked for me and what hasn't. The doses are daily, and were taken for a least 1 month straight.
Supplements Over Counter
Regular L-Arginine (Doses between 1gram - 3grams) = No benefit and lots of upset stomach
Acetyl L-Carnintine(Doses between 500mg - 2grams) = No perceived benefit
Propyl L-Carnintine(Doses between 500mg - 2grams) = No perceived benefit
VASOFLOW (1-3 pills) = definite increase in erectile function, some nasaue
Muira Puama (500 mg) = No help for libido
Gotu Kola (1 gram) = No perceived benefit
Pine Bark OPCs (50 mg) = No percieved benefit
Ashwagandha (50mg ) = No percieved benefit
Zinc(30mg - 50mg) = No percieved benefit
Horny Goat Weed(500mg -2g's standardized 10% icarrin) = the only thing so far that has helped my nonexistant libido, and has helped the decreased sensitivity of genetelia.
Borage Oil(300mg) = No percieved benefit
Vitamine E full spec(400mg - 800mg) = No percieved benefit
Korean Red Ginsing(1000mg - 3000mg) = Initial increase in erectile function...some insomnia with high doses
RX's
Pentoxifylline(800mg -1200mg) = 4 months so far, no noticeable improvements.
Cialis(5mg -20mg) = Temporary improvement in erectile function, initially only needed 5 mg to help, now up to 20mg. (no sides)
Levitra(20mg) = Stronger effect than Cialis, but works only for 4-6 hours, and gives me a stuffy nose.
Trazadone(25mg) = Helped NTE's initially, but then caused retrograde ejaculation.
Depression specific
Overall the hardest thing about this disease or condition is the mental toll. If I could only take one supplement to help me get through this the rest of my life, it would be SAM-E. Wow, I've taken the following RX antidepressant drugs in the past and nothing has come close to what this has done for my depression. These drugs include Prozac, Lexapro, Remeron, and Wellbutrin. If you have to take a RX, go for the Wellbutrin or Remeron. But neither have done anything to help my depression like SAM-E. Also, I read on the forum that SAM-E may have some type of anti-fibrotic effects when combined with PPC's. I haven't seen any physical improvements since I started taking it, but the mental makes it worth it for me.
SAM-E(400mg - 800mg) = Amazing supplement. Try an expensive reputable company like Solgar or Jarrow. Its very unstable and needs to be enteric coated.
Things I still want to try to help increase nonexistant libido and lack of penile sensation. Maca, Mucuna Pruriens, Tribulus Terrestris, Tongkat Ali. I'm too scared to try Yohimbe, becuase of the tons of negative reports I've read about it. Also, my testosterone levels, Total and Free, and very high but I still have zero libido. Do you think taking products that naturally increase these levels like Tribulus or Tongkat are dangerous? I wouldn't be taking them for the testosterone effects, only the libido effects. I don't know what else to try. Thanks for everyone's support.
PG,
Thank you so much for the feedback as to what has been helpful to you! It is always good to see what is working and just might work for others as well.
Just a few comments on your libido issue. First of all, as you have discovered, it takes more than Testosterone to generate libido. And if your Testosterone is already on the high side, generating more of it is not likely to increase your libido. In fact, you note that HGW is just about the only supplement that HAS helped your libido. And HGW DOES NOT raise Testosterone levels. My initial observation is that it may in fact be your depression issue that is knocking out your libido. Depression is REALLY hard on libido. The bottom line is that if you are not in the mood above the waist, you just won't be in the mood below the waist either. Its a pretty easy equation and it has proven itself in my own experience.
Definitely use prescription medication if you must and if the doc thinks you need it. But prescription meds do have side effects and I would avoid them if at all possible. There are some good supps out there for depression and I will touch on that later. But the really important thing to know about depression is that depression is many times more related to physiology than to psychology. If you eat the wrong things and don't get an appropriate level of healthy exercise, you will be prone to depression. Its not about Peyronies, its more about how you perceive and process the Peyronies issue and other issues in your life.
My recommendation in this regard would be the book YOU: On a Diet by Roizen and Oz. If tells you what effect each type of food has on your body. Once you load up on this knowledge, when you walk the grocery store aisle, you see foods differently. And your diet changes naturally and you start to feel better and your whole outlook on life changes. This book also discusses exercise. You will find lots more info on the authors site: http://www.realage.com (http://www.realage.com). I also would recommend http:www.bodybuilding.com (//http://http:www.bodybuilding.com) as a place to learn a lot about guy type health issues and to get tips on simple exercise techniques that can change your life. They also have lots of info on supplements.
Then of course there are also those supplements. One supplement I REALLY like in this regard is Peruvian Maca. I have taken it for some time and greatly value it. It is one of those supplements that is really hard to pin down as to just how it works. But it has something to do with its seeming ability to normalize, not the levels, but the functioning of our hormones. And there is some tantalizing research behind it.
Quote from: WikipediaSmall-scale clinical trials performed in men have shown that maca extracts can heighten libido and improve semen quality, though no studies have been performed on men with sexual dysfunction or infertility. Maca has not been shown to affect sex hormone levels in humans In addition, maca has been shown to increase mating behavior in male mice and rats.
I would use caution with Mucuna Pruriens. Mucuna Pruriens is an Ayurvedic herb.
Quote from: WikipediaIn history, Mucuna has been used as an aphrodisiac. It is still used to increase libido in both men and women due to its dopamine inducing properties. Dopamine has a profound influence on sexual function.
Quote from: WebMDIn laboratory tests with mice, researchers found prolonged exposure to dopamine through this pathway inactivated a regulatory protein in the brain known as Akt and caused the mice to behave like they were depressed in response to stress.
So while Mucuna Pruriens might help your libido, it might also make your depression worse.
Tribulus Terrestris is another Ayurvedic herb. I am currently taking this. I am not noticing any significant effect. From the info that is on Wikipedia, it doesn't sound too interesting.
Quote from: WikipediaThe active chemical in T. terrestris is proven to be protodioscin (PTN), a cousin to DHEA. ... one recent study found that T. terrestris caused no increase in testosterone or LH in young men, and another found that a commercial supplement containing androstenedione and herbal extracts, including T. terrestris, was no more effective at raising testosterone levels than androstenedione alone. SupplementWatch does not consider that there is any scientific evidence for effectiveness in muscle building. It suggests that it may be beneficial for those whose testosterone is below normal, such as dieters and overtrained athletes.
Tongkat Ali is from Maylasia. Tongkat Ali
does increase Testosterone levels. It does this by acting directly on the Testes, thus making it potentially safer than Testosterone augmentation/replacement therapy which can actually result in further atrophication of the Testes. But you already have plenty of Testosterone. Increasing levels further could just add other problems.
One supplement you didn't mention, which I would recommend you try would be Aloe Vera softgels. Aloe Vera, like Maca, is hard to pin down, but it tends to have a normalizing effect on the body. You might find it helpful.
Another supplement I would recommend you try would be Bacopa, yet another Ayurvedic herb. This is a supplement that I am taking for its potential to combat Metabolic Syndrome. It seems to have zero noticeable side effects and has some research behind it. It is believed to be a neurological tonic.
Quote from: PubMedAntidepressant activity of standardized extract of Bacopa monniera in experimental models of depression in rats.
Sairam K, Dorababu M, Goel RK, Bhattacharya SK.
Department of Pharmacology, Institute of Medical Sciences, Banaras Hindu University, Varanasi, India.
Bacopa monniera Wettst. (syn. Herpestis monniera L.; Scrophulariaceae) is a commonly used Ayurvedic drug for mental disorders. The standardized extract was reported earlier to have significant anti-oxidant effect, anxiolytic activity and improve memory retention in Alzheimer's disease. Presently, the standardized methanolic extract of Bacopa monniera (bacoside A - 38.0+/-0.9) was investigated for potential antidepressant activity in rodent models of depression. The effect was compared with the standard antidepressant drug imipramine (15 mg/kg, ip). The extract when given in the dose of 20 and 40 mg/kg, orally once daily for 5 days was found to have significant antidepressant activity in forced swim and learned helplessness models of depression and was comparable to that of imipramine.
PMID: 12046860 [PubMed - indexed for MEDLINE]
You are definitely doing the right thing by avoiding Yohimbe. Yohimbe selectively blocks certain receptors in the body artificially elevating levels of adrenaline, noradrenaline, serotonin, dopamine, etc. I wouldn't dare take this supplement. It can have nasty side effects which could be worse for anyone dealing with depression issues. Bad news. There are better choices.
So I wish you the best on this. There is LOTS of good stuff out there. Life is an adventure! - George
Musicman,
I too have a lot of experience in taking Potaba, and I regret to say that it did not give me any noticeable improvement after 2 years on 12 g/day (yes that is 12 grams per day).
However, there have been proper tests carried out which do show some benefit in some cases (I think you will find them on this forum)
My own feeling is that it will probably not reverse the damage done by Peyronies Disease, but it might, in some cases, slow or stop its progress.
With the wisdom of hindsight, and my own experience (echoed by many on this forum) Peyronies Disease worsens during times of great stress - eg. major family, job or financial problems -so this would be the time to take Potaba.
As such a high dose is needed, it is not the sort of medication that anyone would want to be on permanently anyway.
It is still a conservative treatment offered by some GP's and it might be one step better than doing nothing and hoping for it to get better on its own.
There is however the cost element. My supplies were 'free' on the National Health Service in the UK. If I had to purchase it privately, I would really question its benefit.
Why it should be so expensive I do not know, since the average undergraduate chemistry student could make it.
It is a very water-soluble substance which probably accounts for the need for a high dose - most of it must get excreted quickly (very quickly if it makes you throw up!). You would think that if Potaba showed some benefit then more active forms of it would have been developed by now.
Just my thoughts on the subject!
Good luck
Percival
Hey Guys,
What is the usual amount of L-Arginine those of you who are taking it use? I've got a couple bottles of GNC brand in 500mg capsules, but I'm not sure what the recomended dosage is for Peyronie's. Can anyone help?
Thanks,
Nemo
Come on guys, I know someone out there is taking L-Arginine ... how much you taking?
Nemo
Nemo,
I've used to take 3 grams of regular L-arginine per day, since that is the recommended dose from Dr. Levine. Some guys take more, some less. Right now I'm taking 1 gram of VASO FLOW l-arginine a day, and its helping some.
Hi Nemo,
l-arginine 1000 mg three times a day
I am not taking it now due to some stomach issues thanks to other meds. I used to double up at night (2000 mg). It was too much on my stomach, though. Reflux big time!
I have taken as high as 6000 per day with no problems. I helps erections noticeably.
Thanks, gents!
Any benifit to splitting them up (like 1000mg, 3 times a day) versus one lump dosage at night, for instance? Either option perceived to be better?
Nemo
Three times a day is recommended unless you have a time released brand. There are many many good discussions on this subject of which I don't remember all the details. Look at the highlights section. Also, try searching this topic. Sometimes we used PAV to refer to pentoxifylline, l-arginine and viagra.
Hey guys,
I'm new to this forum but have been interested in all the positive response about Vasoflow. I was wondering how much and how frequently people were using the product and at what times? (with meals, before sleeping, etc). Also, for those with ED issues, do you find taking it a certain length of time before activity is beneficial?
Thanks for any input in advance. I've learned a lot from this forum and been able to resonate with a lot written here.
Hey all
I need some help
Can someone who lives in california or LA please recommened a place to go to get full spectrum vitamin E!!Ive been to a couple of places but dont find it there..unless its called something else???Also been looking for VASO FLOW but have been unsuccesful in a couple of places!!Is there a certain store that may sell all these things??
thanks.
For the full spectrum vitamin e, buy it online at www.vitacost.com. they have everything, very good prices, and have been reliable.
for the Vaso Flow, get it at www.bodybuilding.com. Cheapest place to find it online, and very fast delivery. Best of luck.
California, How often you take VasoFlow will depend on the effect you get from it. VasoFlow is very unique in its design. It is one of the few Arginine supplements that is in liquid form. It is also formulated to be timed release and gives a very smooth effect. IF you are Arginine resistant, which many of us seem to be, you will have a much greater effect from a much smaller dose of VasoFlow as compared to a generic Arginine supplement due to it containing other substances which facilitate its enhanced effectiveness. Personally, I take one VasoFlow Softgel three times a day. Once about an hour before breakfast, once between lunch and supper, and again before bed. It works better on an empty stomach. I usually take it with Horny Goat Weed and Maca and that seems to work well. It has good directions on the bottle that will probably answer your other questions as well. Like PainIsGrowth, I get it from bodybuilding.com. They have both great prices and great service. - George
Thanks George. I had bought it off Vitamin Shoppe but bodybuilding.com defintiely seemed to have better prices.
thanks painisgrowth
one more question :)...does the full spectrum vitamin e go by a different name cause I cant find one that says "full spectrum e" maybe im just missing it???
Heres a couple examples.
http://www.vitacost.com/MegaFoodNutritionalTherapeutixVitaminEComplete8
http://www.vitacost.com/Carlson-E-Gems-Elite-Natural-Vitamin-E
http://www.vitacost.com/Twinlab-Super-E-Complex-1000-IU-250-Softgels
http://www.vitacost.com/NSI-Gamma-E-Tocopherol-Complex
http://smallplanethealth.com/solaray-bio-e-gamma-plex
Soalray makes a good one (I don't normally order it from this site - but it is a good example of full spectrum)..
Ingredients Amount %Daily Value
Natural Tocopherol Mixture: ~
d-Delta-Tocopherol 120 mg ~
Rice Tocotrienols (providing 5 mg Tocotrienol) 30 mg ~
d-Gamma-Tocopherol 300 mg ~
d-Beta-Tocopherol 5 mg ~
d-Alpha-Tocopherol 70 mg ~
Vitamin E (as d-Alpha Tocopherol) 400 IU 1333%
Selenium (as Yeast-Free l-Selenomethionine) 200 mcg 286%
AOR ortho-core has a good breakdown of full spectrum Vitamin E.
"In summary, our current study demonstrates that gamma T and its major metabolite, but not alpha T, inhibit COX activity and thus possess anti-inflammatory activity. Our data combined with the cited human and animal studies suggest that gamma T may be important in public health. It may be that the inclusion of both alpha T and gamma T in vitamin E supplements is more effective in human disease prevention, especially considering that alpha T supplementation depresses gamma T in human plasma and adipose tissue"
http://www.pnas.org/cgi/content/full/97/21/11494.
Good find Hitman! I really suspect that some of the negative effects of Vitamin E that have been reported in recent studies are due to a depression of Gamma-T levels rather than an elevation of Alpha-T levels. Vitamin E is really a whole family of interactive components and the fact that most of the health sector has ignored everything but Alpha-T for years has actually inflicted subliminal damage on people who are only getting Alpha-T in their multis and thus are pushing their Gamma-T levels down to a point that is detrimental to their health. - George
yes indeed George. Too much of the alpha form is very common in multis these days even though Vitamin E has 8 different forms. also synthetic versions of Vitamin E used in research articles to make such vitamins appear to be of little benefit. The synthetic form is d-l I believe so and its 8 different stereo-isomers of the d-alpha form of Vitamin E.
I found this study on pentox and some interesting points out of it that caught my attention, since I have gotten sick many times while taking this medication.
http://www.med.ucla.edu/modules/wfsection/article.php?articleid=207
"Pentoxifylline has immunosuppressive actions by interfering with neutrophil adherence and inhibition of lymphocyte activation.5,6 Trental (pentoxifylline) 400 mg three times per day for one month was effective in reducing the number of recurrent aphthous stomatitis episodes for up to 9 months post therapy. No side effects were reported"
I was wondering what the heck neutrophil adherence and lymphocytes are so I looked them up!
Neutrophils (http://en.wikipedia.org/wiki/Neutrophils)
Lymphocytes (http://en.wikipedia.org/wiki/Lymphocytes)
Both of these things seem to be a key player in the immune system. I don't want to discourage usage of pentox, but anyone considering the drug should take this into consideration, especially if they are older, or more prone to getting sick, or already have some kind of virus or disease!
Comeback
CBK,
I find this very interesting, new (to me) and worthy of discussion. I think there is much more to be said on the topic. First, I may be tired but that study was one of the most challenging I ever tried to read and I can stay with most of them if I take it slow.
I found it interesting that the pentox for 1 month reduced aphthous stomatitis which is some type of ulcer outbreak in the mouth. I don't know if that is common herpes canker sores or not but how does supressing the immune system help that ???
Anyway, I notice they also mention colchicine. I have long known and warned that colchicine can supress white blood cell count. That is monitored with a complete Blood Count (CBC) test. That is usually not a reason not to take it but with colchicine (much more nasty than pentox). The responsible protocol is to take a complete blood count (CBC) to get a typical reading prior to starting colchicine and then do a check after the drug has been taken for about 6 weeks to compare to make sure it is not suppressing production. One concern is this statement
QuotePentoxifylline has immunosuppressive actions by interfering with neutrophil adherence and inhibition of lymphocyte activation.
I wonder if a CBC would determine neutrophil adherence and inhibition of lymphocyte activation? It would clearly reveal supression of neutrophil production because they use a CBC with use of colchicine.
Nice find CBK! This certainly would be a factor to discuss with one's physician. It would also make one wonder whether long term treatment with Pentox would be worth the risks, if those risks included such things as greater susceptibility to cancers and such. That is where it would be a good thing to know more about the affected body chemistry. Perhaps Tim can provide some insights here? The immune system is so very complex and parts of it can be impaired to some degree without huge risk and other parts are better not to fiddle with. And of course, a lot depends on the individual as well. Some people even have somewhat overactive immune systems and that is why they actually treat certain afflictions with immune suppressants. In any case, this connection needs to be thoroughly investigated with as many people around here taking or considering taking Pentox. - George
"In the past, radiation therapy was used to decrease the strength of the immune system, but now immunosuppressant drugs are used to inhibit the reaction of the immune system. The downside is that with such a deactivated immune system, the body is very vulnerable to opportunistic infections, even those usually considered harmless. Also, prolonged use of immunosuppressants increases the risk of cancer."
http://en.wikipedia.org/wiki/Immunosuppressive
If pentox is an immunosupression drug, it appears it could increase the risk of cancer, however i see little scientific data here. Probably wouldn't be good to be on pentox longer than a year or so.
Comeback
Hawk,
I thank you for challenging me somewhat, cause instead of going to bed I did some more research. You asked...
"I found it interesting that the pentox for 1 month reduced aphthous stomatitis which is some type of ulcer outbreak in the mouth. I don't know if that is common herpes canker sores or not but how does supressing the immune system help that "
At first I thought yeah your right this doesn't make sense. If pentox supresses the immune system in some direct or in-direct way, how could it help rid one of a herpes canker sore, essentially why would it boost the immune system in that situation but not in another situation right?
So I got to thinking, in order to solve this problem, one needs to know what causes a herpes canker sore?
"Although the exact cause is not known, aphthous ulcers are thought to form when the body becomes aware of and attacks molecules which it does not recognize.[9] The presence of the unrecognized molecules garners a reaction by the T-cells, which trigger a reaction that causes the damage of a mouth ulcer. People who get these ulcers have lower numbers of regulatory T-cells.[9]"
So as it appears to me, the herpes canker sore is caused by ones immune system attacking molecules.
When someone would take the pentox, which occording to my theory weakens the immune system, ones "body," or immune system would not attack the unrecognizable molecules, hence perhaps that is how the pentox helps one who gets canker sores chronically? This would make sense for this scenario and still retain my theory that pentox supresses the immune system in either a direct or in-direct way which is not totally understood(and may never be.) I dunno this is just how I'm seeing it now that I think about it more, what do you guys think?
Comeback
Quote from: ComeBacKid on September 03, 2007, 02:37:25 AM
When someone would take the pentox, which occording to my theory weakens the immune system, ones "body," or immune system would not attack the unrecognizable molecules, hence perhaps that is how the pentox helps one who gets canker sores chronically? This would make sense for this scenario and still retain my theory that pentox supresses the immune system in either a direct or in-direct way which is not totally understood(and may never be.) I dunno this is just how I'm seeing it now that I think about it more, what do you guys think?
Comeback
I guess on occasion we should step back and ask ourselves what damage we might be doing to our bodies in our pursuit to deal with peyronies. The answer could be 'very little', but do we actually know an awful lot about drugs such as pentox, and how safe they are in the longterm?
Quote from: newguy on September 03, 2007, 08:06:15 PM
I guess on occasion we should step back and ask ourselves what damage we might be doing to our bodies in our pursuit to deal with Peyronies. The answer could be 'very little', but do we actually know an awful lot about drugs such as pentox, and how safe they are in the longterm?
New Guy,
The question you brought up should be asked every time we take
any prescription medication for
any reason. This also applies to with many over the counter remedies like Aleve, as well as many supplements.
As drugs go, Pentox is probably go a longer more observed and better documented track record than most prescription drugs that the majority of people on this forum are taking for colestorol, high blood pressure, arthritis, ED, and numerous conditions.
But... you are right.
Every drug has potential side effects. In fact every treatment has potential side effects including VED, traction, surgery, hyperthermia, and ESWT
the side effects are very individualistic in nature. everybody has a different chemistry and some people's bodies respond very well to certain drugs.
Newguy,
Your right, we should take a closer look at all these therapies, unfortunately the medical community still isn't doing much for peyronies disease!!!! They don't recognize that there are more people out there who have it then they think, and the $$$ really is there to be made. The reason I made my post, really is because I thought I discovered something new about pentox. I recgonized that I got three colds in three months, and may now have picked up a virus, that ones immune system can fight off in about 6 months. I seem to have the virus slightly more severe than the average mate. I put these things together and questioned pentox having an impact on ones immune system. I also recalled from the past some of tim's, hawk's, and george's comments on it, vaguely. I did a little homework and seem to uncovered new information about it. I wanted to pass it on to you guys to make you aware, some people may not be able to afford to take a hit in their immune system. If I find any more information out I'll pass it along so everyone can stay informed on this medication. As I watch TV and see more and more drugs and medicines being prescribed, than afterwards they list 20-30 possible side effects, one has to wonder, is this really good for the body? Will any medication such as birth control for women, or something like accutane, which i was on in the past, disrupt the body in any negative way? I know for me that being on accutane at age 17, made my joins so stiff i had to quit running cross country, and missed an entire season, this can't be healthy at all. I just think theres a lot of things about all these drugs we don't know, may never know until its to late, and things the drug companies know but don't want to tell us!
Comeback
Comeback
Neutrophil adherance does not affect viral infection, as those white cells do not lead the battle against viruses.
Lymphocytes can be involved in viral disease fighting.
Getting three colds is much more likely to be due to bad luck than immunodeficiency - this is a common problem we all face which is to figure out cause and effect. I tend to believe now in taking the slow release vitamin C because I have not had a significant cold since I started it over 1.5 years ago. But I am not really sure, any more than CBK can be sure that Pentox affected his vulnerability to colds.
Personally, I am more interested in getting my penis straight and functional and it seems that follwoing up on the testosterone connections might be more fruitful than the pentox pathway. Like many of us, I yearn for a thoughtful urologist and an algorithm to guide our hand. I yearn for the day when urologist will gather data in a thoughtful manner, and then make decisions based on our biochemical individuality such that our odds of getting better are best.
Otherwise, we are all, like CBK, in the dark.
Tim
Tim,
Can you give a lay description what role neutrophils have in our immunity and the possible impact of pentox?
As NewGuy indicates this can be crucial info for some. I think due to the age of many Peyronies Disease patients that we do have to exercise caution. On one hand, prostate cancer is a testosterone fed cancer. Prostate cancer in a slow-growing form is present in many older men. Compromised immunity may add to this or a host of other problems. I am puzzled why pentox unlike colchicine does not seem to list impact on white cells as a side effect.
I do know neutrophil count (as opposed to adherence) is a major concern in chemo patients. If reduced adherence renders them unable to perform their task, I would think this is significant. I also wonder if this is typical. The suppression of white blood cell count by colchicine is not a typical side-effect but a possible side-effect.
While we don't need to cause a phobia of testosterone when it is clearly needed, or of pentox, we need to know that these substances are not targeted "smart drugs". Everything from food to meds, to herbs and supplements impact a dynamic system.
ON THE OTHER HAND ... Haven't I heard somewhere speculation that Peyronies may involve an autoimmune factor? If so, perhaps this is actually a means by which Pentox is beneficial to Peyronies patients. (I know that this is off the wall ... but I just decided to throw it in as a thought provoker). - George
QuoteHaven't I heard somewhere speculation that Peyronies may involve an autoimmune factor? If so, perhaps this is actually a means by which Pentox is beneficial to Peyronies patients. (I know that this is off the wall ... but I just decided to throw it in as a thought provoker). - George
That is almost a verbatim quote that I made to Comebackid in a pm conversation. Regardless, it does not negate the other concerns.
Are you implying via your comment, that you agree that pentox weakens ones immune system in a direct or in-direct way? What do you think of the UCLA study?
Comeback
I don't have time for a long (or even short) answer to your question right now, Hawk. I will try to get to it in a bit.
Pentox does not "weaken" the immune system. That is a poor description of its' effects. Rather, it "modulates" the immune system. If you have inflammation, "modulation" (or suppression) may be a good thing. If you are normal, then you shouldn't be taking anything.
The entire point of taking Pentox is to downregulate the TGF generating system (which is part of a "normal" immune response) when that system is out of control. Pentox has many other effects, such as effects on platelet aggregation and adherance, TNF production, etc. These are effects on the immune system.
Whether the overall effects are good for you or bad for you depend on why you have Peyronie's, what caused it, what systems are upregulated, and what else you are taking or doing to your body. Unfortunately, we do not have (and when it is possible, we do not get) a method of diagnosis that is thorough and complete and thoughtful that looks at immune function, TGF, overall autoimmune function etc. All that is still in the realm of experimental medicine, except almost no one is doing the experiments.
Tim
Tim
Tim's post points out a simple fact of life that most patients are quite unaware of. The very characteristics that make a drug/herb/supplement (even food) effective in treating a given condition can also cause it to have risks. Human physiology is very dynamic. Its processes and subprocesses are legion. And they are all interconnected. A cynical perspective concludes that "you fix one thing and break another". But the reality is that every individual and every case is different. That is why we have physicians who are trained to recognize those subtle differences and prescribe accordingly as much as possible in order to avoid the pitfalls. But it is also a major pitfall to have a simplistic view that no risks are acceptable. That would preclude one from ever using any medication, most supplements, and even some food products. And I have to tell you, what really cracks me up is people who complain about the imagined side effects of their medications while they puff away on their cigarette. ::) Most certainly we should be aware of possible side affects and know as much about them and their implications as possible, but we have to retain a balance and recognize that everything in life that offers benefits also holds risks. They need to be assessed and managed but not allowed to terrify us into inaction. - George
Here is a typical example of how just about everything you ingest can have a downside:
http://www.healthday.com/Article.asp?AID=607889 (http://www.healthday.com/Article.asp?AID=607889)
- George
Extarnal apply to skin cooper or/with oil vitamin E by DMSO is safe ??? is it good and work also for plaques ???
thank you from now / Nectar
Nectar,
There are no studies, surveys, or even random reports that Vitamin E applied to the skin with or without DMSO would penetrate to Peyronies Disease plaque. DMSO only carries substances that have a certain molecular weight. I have no idea what the molecular weight of Vitamin E is our the weight of the base it is dissolved in. Even if the vitamin E was carried by the DMSO, it would be questionable whether it carries it the entire way to the plaque, beyond the plaque, or to the network of blood vessels. In fact we know it carries it into the blood stream or the DMSO would not be detected on the patients breath.
I will move these posts to the DMSO topic.
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17764527&ordinalpos=23&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
Apparently taurine has some activity against TGF beta...kinda what we are all looking for I guess. Upside is it's cheap and readily available...goes into the "can't hurt" category most likely. Also, looks like we have documentation that it has reversed fibrosis of at least two different kinds...in the lung and pancreas.
Stay positive!
Taurine is in Red Bull. Interesting.
Interestingly, taurine did not lead to reversal of fibrotic pathways when use alone, but did do better than control when combined with N-acetyl cysteine (NAC).
http://diabetes.diabetesjournals.org/cgi/content/full/52/2/499
The other chemical that helped in this model of diabetes related fibrosis (collagen deposition was measured by skin levels of pentosidine) was Oxerutin (which is another flavanoid like Rutin).
I don't know if they checked all three together. They said in the conclusion: "Treatment with oxerutin and combined treatment with NAC plus taurine gave the most encouraging results, whereas the results of taurine-only treatment were either negligible or negative and therefore suggest caution in the use of this molecule in single-drug treatment courses."
In a rat model of renal fribrosis, they found that taurine: "treatment with taurine reduced the TGF-beta 1 mRNA levels in 24- and 30-mo-old rats by 40%. Taurine also completely blocked increases in type I and type IV collagen expression in mesangial cells in response to TGF-beta 1."
http://ajprenal.physiology.org/cgi/content/abstract/278/1/F122
The jury still appears to be out on taurine, but anything that reduces collagen production and TGF pathways is worthy of further evaluation.
Tim
I stumbled across this....im not very knowledgable at all with this stuff but is the statement below a load of balogne??......one more question..is there a difference between peyronies and scar tissue??i didnt spontaneously develope peyronies...i injured myself and then about after a month my little guy turned hard....i know it is scar tissue....i dont have any pain though...im jst flying a little blind though as i dont know what will help or make it worse...ive been on pentox and cialis and sum other things for +/- 7months now and have not seen any significant worsening so that is good i guess..i was told by doc to wait a year cause that is how long it usually takes to do its business......bt i was told by one doctor overseas that some medicine can wash out the scar tissue bt i havnt been able to go to him again bt from my reseach and stuff it doesnt seem there is
"there is product on Jon Barron's website www.baselinenutritionals.com called PHi-zymes that will dissolve the scar tissue. Go to his website and click on catalogue/shop and you will see the PHi-zymes listed there. Category C has the best price. These were originally called Proteolytic enzymes but has reformulated them and renamed them.
This is taken from his website....
If you take a healthy dose of a wide ranging proteolytic (protein digesting) enzyme formula between meals, the enzymes can make their way into the blood stream with a broad array of potential health benefits. This formula can help reduce inflammation and swelling in the body, clean out and repair the cardiovascular system, dissolve blood clots and scar tissue, digest fibroid cysts, and digest Circulating Immune Complexes, which helps eliminate autoimmune disorders and allergies. For athletes, it can also improve performance and reduce recovery time. Note: this formula is so powerful, so unique, so remarkable that Jon Barron has filed a patent on it. pHi-Zymes are an absolute revolution in systemic proteolytic enzymes.* "
sorry if this is a waste of time :)
A small informal study on NAC for Dupuytren's has been going on in Germany for some time:
http://www.dupuytren-online.info/dupuytren_NAC.html
Here's an abstract on the possible effect of NAC on TGF-beta:
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&dopt=AbstractPlus&list_uids=16563228
I've seen posts from a couple of people with Dupuyten's who've tried NAC, but no positive results yet.
For those interested in Taurine treatment,
I suggest taking the Red bull (good advice Liam) along with a couple of JD on the rocks, since whisky helps the taurine to be assimilated in the blood faster...
Add some crisps, crackers, sausages, foie gras...
...and you got yourself a nice aperitif! ;D
I'll remove this silly comment on demand, I know it's not the right place (but I could not resist Liam's half serious comment).
More seriously, does taurin goes in the "can't hurt" box as roadblock said? there are 2 versions on the Web I just found:
http://en.wikipedia.org/wiki/Taurine : very positive, Taurine will solve many of your life problems...
http://fr.wikipedia.org/wiki/Taurine : hmm, the french site has a more contradictory POV. I can translate on demand (10$ per line ;)) but apparently, it has some side effects (again, it's hard to tell since they say "no research could precisely determine whether Taurine could be safely used or not as a supplement ???"), but they say that GI's who were given Taurine during the Vietnam and Korean War as an antidepressant and in order to increase their mental vigilance has resulted in headaches and some brain haemorrhage...
I wonder how the mouse tells the research guy that she's got headaches...
If you try it, check how much you can take per day, cause too much of a good thing could be a bad thing.
I think it could be used in a combination maybe for anti-fibrotic purposes, but I don't want to be hyper-focused all day long.
The PHI-zymes mentioned by Gibson101, I don't know, but I'm very cautious with revolutionary treatments with no scientific backup. There are so much stuff supposed to improve overall health, naturally, no side effects, blablabla, buy 3 for the price of 2... When you look at the description, this is a miraculous enzyme.
A few days ago, I looked for some natural supplements against fatigue, many of them were miraculous as well, especially the "Avena Sativa" supplement, supposed to naturally increase testosterone in human beings, reduce fatigue and so on...
When you look at Avena Sativa, its common name is "oats".
Take a bowl of Quakers' oats every morning and you'll be strong as a horse!
When they say it's a new, miraculous complex of "blablabla", ask them what the "blablabla" is composed of, then check in books or on the web. Most stuff sold at high prices is bull...t. And as George999 means, it's hard to tell the side-effects of everything we swallow, so many complex reactions and interactions... and so many contradictions on the web ;).
I would rather take a topical treatment than something that goes all over the place in my body and will cause god-knows-what minor or major reactions.
But I'm just paranoid I guess.
Hey guys. It's been a while since I've been on here but have a couple of questions. My Peyronies Disease basically seems unchanged over the last six months. I'd love to say that I've improved but I don't think that's the case. On the other hand, things don't seem to have gotten worse, I can have intercourse and don't have any pain so I consider myself fortunate. :)
Anyway, here are my questions:
#1 - I've been taking Horny Goat Weed a couple of times a day. However, I also take a 25 mg dose of Viagra before sex, as much for protection (I feel less likely to re-injure myself if I have a harder erection) as for any medicinal properties. I'm wondering two things. One, is there any danger of taking both HGW and Viagra at the same time? I seem to recall someone saying something about this back in the day but couldn't find the post. Second, I'm wondering if I could just up the HGW consumption and do away with the Viagra (which is expensive, gives me a stuffy nose, etc.). I saw Tim post that he does 5 grams(?) of HGW daily and that was the equivalent to about 50 mg of Viagra. Seems like a lot so made me wonder...
#2 - Many people here seem to rave about Full Spectrum Vitamin E so I thought I'd start that. Any recommendations for brands, etc. I searched Amazon and didn't come up with much.
Thanks guys for all the help!!!
Hi all,
Just a quick question, I have missed one dose of my 2 x 400mg daily. I have been on it for 5 months. Is this such a big deal or not really ?
I know this seems to be a trivial question but I kind of feel bad about having to miss a dose.
Thanks in advance,
Pal
Pal,
I am not a medical professional but I cannot imagine any patient taking pentox for any condition that has not missed a single dose in 5 months. Stressing over it for an hour will cause more harm than the missed dose. Forget about it and continue on your course.
Pal
Us docs live for patients like you... don't worry - no big deal.
Tim
As some of you may know, over the past month I have been experimenting with Tongkat Ali LJ100 Extract from Herbal Powers (reputed to be the TA expert). What led me to this is the fact that Tongkat Ali is believed to boost Testosterone levels which is believed to be beneficial in terms of Peyronies. At this point I feel it appropriate to share what I have learned through that process.
The label on the bottle basically advises 2 to 4 caps per day, no more than 8. The label also advises frequent short breaks and intermittent long breaks. I decided to do 4 per day, 5 days on, 2 days off.
The first week by day 4 I was experiencing increased energy and significantly enhanced libido, slept well at night and just feeling great. By the 5th day, my energy level was climbing, but my libido was slipping and I was experiencing some insomnia on the 5th night.
The second week my libido was so-so, my energy levels where rising through the roof and the nights were becoming hell as I shortened the regimen from 5 days to 4.
The third week, libido continued so-so, my energy levels continued high, sleeplessness continued, and my blood pressure was noticeably on the rise. and I was getting very cranky and irritable. I was also noticing some weight gain going on. Mainly due to the rising blood pressure, I cut the TA off completely on the third day.
My plan at this point is to take a 6 to 8 week break. Now at the end of the fourth week (with no TA), my energy levels are still high, my libido hasn't taken a dive (really no better or no worse than before starting the TA), my weight is moderating, I am no longer irritable, and my ability to sleep at night has returned. I am also convinced that this stuff does work, although I don't have a great deal of confidence in being able to get it to do what I want it to do without driving me insane.
At the point I take another shot at it, I will try it at 2 per day instead of 4, and hope it works out better that way.
I will keep you all posted.
- George
George,
I have had trouble fidning articles that document increases in testosterone with Tongkat Ali. Do you have any good references? The socalled world's expert listed on the sites doesn't seem to have any peer reviewed publications. That does not mean it is bunk - I am just wondering.
In terms of your findings. When you say "getting it to do what you want it to do", do you mean reduce curvature of fibrosis? If so, are there any indicators that you plaque or curve are better?
Wonderingly, Tim
Tim, that is the reason I worded my post carefully using the term "believed". I don't think there are any solid studies out there one way or the other on TA. I have found nothing either proving or disproving the claim of increased T levels, only lots of suggestions that it does without any real science behind them. So I really don't know. I can tell you it does do something, I have no doubt of that. It is not something that you just take like you would a sugar pill, it does pack a punch and people should be careful with it. As for my Peyronies status, that has not changed perceivably over the four weeks, but I would not expect any thing to change on that front that quickly. What I am expecting with the TA is simply a beneficial effect. I find it interesting that its effects do seem to parallel the effects of anabolic steroids to some degree, which of course proves nothing, but does lend some degree of credibility that it might be in some way affecting T levels. As for what I want it to do. What I would really like to see is some moderate and sustained boost in libido that would be indicative of general improvement in sexual health. I also like the effect on energy level. But the other effects, I am definitely wanting to avoid. It is claimed by TA advocates that it is possible to get the benefits without the nasty side effects. I am hoping that is the case. If I can achieve this over a sustained period, I would suspect that possible Peyronies benefits might come very slowly over an extended period of time. - George
George,
I noticed you did not recap your pretty amazing post of a "wet dream". I would call that very increased libido by any definition. If was psychosomatic you are a very suggestive subject.
Weight gain from increasing testosterone should only be lean muscle gain and fat loss. If this was not the case then something else is going on. BE CAREFUL.
Also, increase in testosterone (if it really does that) also has dangers for lurking prostate cancer.
Hawk
Hawk,
I would be the first to admit that I really don't know the totality of what is going on here. I am really just trying to report what I have experienced without trying to hard to make sense of it. The "wet dream" was indeed part of it all, a one time occurance and it came on the heels of the increased libido, but then the whole thing seemed to crash with the insomnia and irritability stuff. The weight gain was so transient, that I suspect it was neither lean gain or fat, but rather water that was behind it, and that could be related to the eventual rise in blood pressure, who knows. And although testosterone rise is associated with prostrate cancer, I believe there is research that tends to indicate that TA actually has anti-cancer properties. In any case, I am planning to radically scale down my next experiment with TA.
George
Has anybody ever tried this product, and if so, what was the result?
htttp://www.peyrotin.com/about.htm
Oddly, none of us have tried this "100% cure" for Peyronie's Disease.
I find it so much more than offensive that anyone might try to prey on the vulnerability of those with illness by making unfounded claims such as this site does. It is miserable, and they will (of course) say they are here to help.
Yet none of the individual ingredients have been studied for their effects on inflamation (well, maybe some of them have, but none of them look real familiar to me at a glance).
Tim
This homeopathic stuff I would guess consists of 2 x 250 mg tablets per day which would give you a selenium supplement of about 50 micrograms/day at the mysterious 4DH dilution - which seems to mean one part in 10,000, from what I have read on the web. So the level of selenium supplement would appear ok according to what I read in MedilinePlus.
I have no idea what the other ingredients are but if we base them on 2 x 250 mg tablets/day, then 2DH would give 5 mg/day, 4DH would give 50 micrograms/day and 8DH would give 0.005 micrograms/day.
At these levels, there would have to be some really strong synergy between these components to cause an effect.
As you might expect, I am not a believer in homeopathy and tend to agree with Tim's comments on companies preying on desperate Peyronies Disease sufferers.
However, having said that it is unlikely to work, the cost is not outrageous and it just might be as effective as Potaba!
Regards
Percival
OK. I wasnt going to try it, I was just curious. After purchasing the pump and the traction device I'm through for a while. I stopped the supplements because 30 years from now when my penis will naturally fail, my stomach needs to continue to work.
LOL KNow where you're coming from. I have adjusted dosages so many times for that reason. I am now just using the VED and Traction myself. I will start back on PAV once I get off some other Rxs.
Boodoo2u,
I disabled the link you posted so it does not help boost the sites ranking in search engines.
I never understood the science behind homeopathy, and maybe there isn't one in the first place.
This is oh so interesting. Here is a "company" based in Germany that is selling a Peyronies "cure" in the US and a couple of Spanish speaking countries ... but apparently NOT in Germany. Hello ... Red Flag ... Red Flag! They market their "product" as a "guaranteed cure". But their website was created in January of this year. Quite a track record, no? Hello ... Red Flag ... Red Flag! The office is a "Suite" in some building in Berlin. Hello ... Red Flag ... Red Flag! That "Suite" is actually a ... Private Mailbox (no live person inside, guaranteed!). Hello ... Red Flag ... Red Flag! Oh, and you too can get your very own address in that very same building to discreetly market your goodies out of and sign up for it right on the Internet (https://www.mailnetwork.com/cgi-bin/orderone.cgi?action=gola&goodcitykey=134&bilkey=&formlogin= (https://www.mailnetwork.com/cgi-bin/orderone.cgi?action=gola&goodcitykey=134&bilkey=&formlogin=)). So you can make money selling a worthless Peyronies (or even Cancer) cure as well ... what are you waiting for?
Well, sorry for the heavy cynicism here. I really do think there is a cure for this junk our there. And I think we may very well find it. But not in places like this. So listen to those wise voices out there who are already questioning this scam.
Wish you the best bodoo2u! You did the right thing by inquiring here. We all are on your side and will always do our collective best to give you the straight scoop. But there are a lot of unscrupulous operators out there who only have their eyes on our wallets. We need to hang tight together to prevent them from victimizing us. - George
This got buried I think so I thought I'd bump it. Thanks in advance for any help on this front! :)
Quote from: DannyOcean on September 24, 2007, 02:53:09 PM
Hey guys. It's been a while since I've been on here but have a couple of questions. My Peyronies Disease basically seems unchanged over the last six months. I'd love to say that I've improved but I don't think that's the case. On the other hand, things don't seem to have gotten worse, I can have intercourse and don't have any pain so I consider myself fortunate. :)
Anyway, here are my questions:
#1 - I've been taking Horny Goat Weed a couple of times a day. However, I also take a 25 mg dose of Viagra before sex, as much for protection (I feel less likely to re-injure myself if I have a harder erection) as for any medicinal properties. I'm wondering two things. One, is there any danger of taking both HGW and Viagra at the same time? I seem to recall someone saying something about this back in the day but couldn't find the post. Second, I'm wondering if I could just up the HGW consumption and do away with the Viagra (which is expensive, gives me a stuffy nose, etc.). I saw Tim post that he does 5 grams(?) of HGW daily and that was the equivalent to about 50 mg of Viagra. Seems like a lot so made me wonder...
#2 - Many people here seem to rave about Full Spectrum Vitamin E so I thought I'd start that. Any recommendations for brands, etc. I searched Amazon and didn't come up with much.
Thanks guys for all the help!!!
Danny, Icariin (the active ingredient in Horny Goat Weed) and Viagra belong to the same class of drugs. They both are basically PDE-5 inhibitors. They differ in the details mostly in terms of other effects and benefits they might have that are not necessarily equivalent. So, conceivably, if you were taking a LOT of HGW along with Viagra, you could increase your risk of Priapism. However, the Icariin in HGW is much less concentrated than the Viagra, meaning you would probably have to take quite a bit of it for an interaction to happen. But, honestly, I don't see the use of taking HGW if you are on Viagra. It would be like taking Viagra and Cialis together, or Viagra and Levitra. It wouldn't make a lot of sense. And of the two, Viagra is probably the better, although much more expensive, choice.
As for full spectrum E, there is a lot of it out there. GNC has it. iherb.com has it. Others can name their favorite sources, but it is widely available. Just look for 400IU Alpha Tocopherol + around 300mg Gamma Tocopherol. Those are the magic numbers since Alpha attacks oxygen radicals and Gamma nitrogen radicals. If you take Alpha alone you will deplete your body of Gamma with bad results. - George
Great. Thanks George! I like taking HGW on a regular basis but find that Viagra helps more when I know I'm going to have sexual intercourse. When I have a strong erection I feel less likely to reinjure myself. I'm only taking 25mg doses of Viagra and taking 1,000mg of HGW 2x/day so based on the calculations I've seen that would be like taking a 10 mg dose of Viagra in the morning and a 35 mg dose of Viagra in the evening. Doesn't seem too bad...
Thanks for the info on full spectrum Vitamin E. Will definitely look into that!
Quote from: George999 on October 02, 2007, 10:34:09 PM
Danny, Icariin (the active ingredient in Horny Goat Weed) and Viagra belong to the same class of drugs. They both are basically PDE-5 inhibitors. They differ in the details mostly in terms of other effects and benefits they might have that are not necessarily equivalent. So, conceivably, if you were taking a LOT of HGW along with Viagra, you could increase your risk of Priapism. However, the Icariin in HGW is much less concentrated than the Viagra, meaning you would probably have to take quite a bit of it for an interaction to happen. But, honestly, I don't see the use of taking HGW if you are on Viagra. It would be like taking Viagra and Cialis together, or Viagra and Levitra. It wouldn't make a lot of sense. And of the two, Viagra is probably the better, although much more expensive, choice.
As for full spectrum E, there is a lot of it out there. GNC has it. iherb.com has it. Others can name their favorite sources, but it is widely available. Just look for 400IU Alpha Tocopherol + around 300mg Gamma Tocopherol. Those are the magic numbers since Alpha attacks oxygen radicals and Gamma nitrogen radicals. If you take Alpha alone you will deplete your body of Gamma with bad results. - George
I have taken to taking about a third of a 20 mg Cialis (I break off the narrow tip and then bite the remaining two thirds in half) about every two to three days. Additionally, on "off" days, I take several HGW - though less than before. I have taken alrge doses of HGW without getting either the effect or the side effects I get with Viagra or Cialis.
I note that a lower dose of Cialis still allows for very hard erections but far less of the headache or flushing I can get with it. Almost any dose of Viagra does that to me. I also note that when I am taking HGW, I get side effects with Cialis at a lower dose than when I am not taking HGW. I take that as a sign of additive effects.
Tim
What's up.
While this isn't exactly an herb or supplement, I thought a solid diet would be a good contribution in the oral treatments section.
Breakfast:
1 Whole egg, 3 egg whites Scrambled
Bowl of cereal w/ 1% milk
Glass of Orange Juice
Mid-Morning Snack:
Granola Bar
Water
Lunch:
Glass of Orange Juice (Or other natural juice)
Soup
Sandwich OR Sub (No mayo, light on cheese)
Mid-Afternoon Snack:
Granola Bar
Water
Dinner:
Chicken Breast OR Fish OR Steak (Once in a while)
Broccolli
Rice
Night-Time Snack:
De-caf Green Tea
Fruit Bowl OR Protein Shake (Find which works best for you)
Keep in mind this isn't set in stone, it's more of a guideline. Most of the people seem to be on a vasodilator of some sort, so I left out anything with caffeine in it. While eating a proper diet might not have a DIRECT effect on peyronie's disease, I'm sure overall being a healthier person in general will go a long way to helping your body fight the disease.
Hi guys,
I'm almost 20 yrs old and I don't know for sure if I have peyronie's because I can't feel any hard tissue, but the curvature in my penis seems abnormal. I first spotted the curvature of my penis some years ago (about 4-5), it was a small curve and I've read on the net that it's a normal thing so I didn't give it any attention. In the last couple of years though, the curvature seems to have increased and sometimes(rarely) felt some amount of pain during erection.
I've read about the "standard" doctor's recommendation of Vitamin E (200 international units / 3 times a day).
How long should this treatment be? Is it like 10 days treatment, 10 days pause and then repeat kind of treatment or just for a long period of time - maybe months without interruption ?
You sound normal to me. Everybody has some curve. As far as pain, thats called a "raging hard on". You should have many more if you're lucky.
Don't worry about Peyronies Disease until you are about 50.
I'm new here, but have been lurking for quite awhile and have followed research into this topic for the better part of a decade. I believe that vitamin E is a very conservative protocol for Peyronies disease and its benefit is not very well supported from what I've seen. It shouldn't hurt and may possibly help, but I think that long term use would be called for. I don't think ten days of treatment would accomplish much of anything.
In the way of a presentation, I'm 34 and have been struggling with this for about a decade, hourglass was initially bad, but then got noticeably better for a number of years. This summer I've noticed a significant hardening of the plaque and a corresponding increase of curvature to the right as well as increased pain.
Liam, I have found your responses to be generally thoughtful, but I do take issue with your advice to this young man not to worry about peyronie's until age 50. As someone who got nailed with it in his twenties, I can only envy any of you who spent the best years of your sexual lives without having to worry about it, but there are a significant number of us who are hit early and hit hard. I know we don't fit the typical profile, but it doesn't negate our existence.
I'd personally advise the new young member to go to a Urologist and seek a professional opinion. I didn't have a real noticeable plaque at the beginning either, but did have hourglassing. I think everyone is different. I also think that anything you can do earlier rather than later is for the best. I'm finding that calcification is a real bitch and wish I would have attempted more treatment options earlier on. For now I'm turning back to VED and adding traction as well as taking Pycnogenol and Ginkgo for better erections (I was also taking arginine, but started to have cold sore breakouts - so I dropped it for now). Good luck to everyone. You can count on me to post more often now that I'm having to address this head-on again. Thanks for everyone's input in advance.
Amigo,
Welcome! I always glad to see a posts from someone that has been lurking even though I am sorry for the circumstances that prompted it.
Hawk
hey amigo
good to have you here, whats the reason for using Pycnogenol.
thanks hitman and Hawk... Hitman, there was a small study in 2003 indicating success at treating erectile dysfunction with pycnogenol and arginine. Here's a link to the abstract... I'm pretty sure it has been posted on here before, but just in case:
http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&list_uids=12851125&cmd=Retrieve&indexed=google
It isn't clear from the study whether the arginine is necessary or not. It is pretty clear that the pycnogenol IS. It's moderately expensive (about $25 a month) but still less than a copay for my insurance covered prescriptions. If anyone else has found a study that contradicts this one, i'd love to know. The quoted 80- 92% improvement is pretty impressive. Any extra bloodflow down there seems to be a good thing.
Pycnogenol is indeed good stuff, but it is definitely expensive. I have been taking it for several years now, along with a number of other supps. During that period, my Peyronies has not progressed, but has in fact been on the retreat. Arginine is also definitely good. I take it in the form of SAN VasoFlow, since they add other components that enhance the Nitric Oxide effect. This makes it possible to get the same effect from a much smaller amount of Arginine and greatly reduces the likelihood of side effects from the Arginine. I have also discovered that elevated blood sugar/insulin levels really pours gasoline on the Peyronies and making sure I keep those way down helps immensely. I used to experience unexplained flare ups, but since I have cracked down on the high glycemic carbs, that problem has disappeared completely and the Peyronies has become very stable and much under control.
Are Pycnogenol and Arganinin widely available supplements? I'm guessing I won't be able to pick them up at GNC, but would my local well-stocked herbal supplement shop have them? Or, like DMSO, am I going to have to pick it up from an online vendor?
Arginine and Pycnogenol are available at GNC if you want their brand.
DMSO should be researched and only then purchased (from an online vendor)
George -what dosage of VasoFLow do you take? I see it is a little pricey as well if you take their recommended 6 capsules a day. Ocelot - you can find pycnogenol and arginine in any health food store or vitamin shop. I get almost everthing I buy at our local Vitamin Cottage. Although, if I was ever going to try VasoFlow, I'd have to order that online - haven't seen it here locally.
Amigo, I only take three per day, one before breakfast, one between lunch and supper, and another before bed. The six capsule recommendation is for bodybuilding purposes. Also, I buy them from bodybuilding.com. They have just about the best price of anyone and their service is excellent although their focus is the bodybuilding community. But they are an Arginine product so you should probably go easy with them until you get your cold sores under control. Usually cold sores resulting from too much Arginine will go away with a little Lysine, you might give that a try. - George
Thank you George. Funny you should mention Lysine, I picked up a giant bottle on Tuesday hoping to ameliorate the cold sore symptoms next time I try Arginine. I appreciate you sharing your source for the VasoFlow, I'll probably at least try it once with Lysine and see how things go.
Gents, I have a question I need your counsel on. I'm 36 and have had a "stabilized" case of Peyronies Disease about 5 or 6 years now. My only lasting symptom is a head that doesn't get as full or hard as it did before my run-in with the dreaded Peyronies Disease. Consequently, while I get good, usable erections, they are kind of high maintenance, as the head is not fully hard most of the time, requiring constant "attention" to keep my erection nice and hard. Because of this, my doc gave me Viagra samples and finally a prescription. I use 25mg and it's outstanding - I get a nice hard erection that I don't have to worry about going down if it goes a few minutes without attention - I love it. The side effects of the V (headache, flushing) have even decreased for me, while the efficacy has not.
However, here's my concern. I'm with a girl currently who loves to have sex every day. She doesn't know I sneak a V-bomb before most encounters, as I'm emberrassed about being so young (relatively) and taking V. On a couple occasions I didn't get a chance to drop a V, and everything worked, but I was a little worried about maintaining throughout. Because of her insatiable sex drive (which I love, of course), it got me to wondering about long-term affects of taking Viagra. I'm looking at taking 25mg a day for the foreseeable future. Specifically, I'm worried about developing a dependency, or even worse, suffering diminishing returns after a year or two or three at 25mg - will I have to start upping the dosage? And what if I get to the point where no dosage works?
Has anyone been on V for a long enough time to determine the long term affects? It's got me a little concerned given my relatively young age for this drug. It absolutely works like a magic bullet for me, but I can't help wonder about the future. Any perspective would be appreciated.
Thanks,
Nemo
Nemo,
I never heard of a dependency on Viagra however, if a person is on a downhill course when introduced to Viagra, the decline could continue (age etc) and the dose have to be increased. That is a result of the progression of the original problem, not a dependency issue IMO.
If a 25 mg Viagra does wonders, I am willing to bet that 2000 mg of L-Arginine (maybe less) would work as well.
Hawk
Hawk, thanks. I am experiementing with L-Argenine ... I try to take 3,000mg a day, but it seems like I can never remember to take all three sets of pills. I'm also trying horny goat weed to see if that will do anything, but it's just so convenient to pop a Viagra half an hour before I need it, it's really like a magic bullet for me. I guess I have the same concerns about Argenine and HGW as I do the Viagra - I just hate the thought of getting my body dependant on something for good erections. But in the face of the tremendous confidence the Viagra instills in me, I'd really like to keep using it, worry free.
Thanks for the reply.
Nemo
Try Korean Red Ginseng for more confident erections. It must be the Korean Red (not Panama, thats a different tune).
BTW, what you describe sounds more like a psychological dependency than a physical dependency.
http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&uid=8750052&cmd=showdetailview&indexed=google
Try a Google search. Its a liquid and is fast acting. It is also good for energy.
Thought I'd contribute a couple links to other Korean Red Ginseng abstracts:
http://findarticles.com/p/articles/mi_m0689/is_1_52/ai_96891646
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1745-7262.2007.00210.x?journalCode=ajan
I've never tried the stuff myself, but after reading the abstracts, I might. I'm still impressed with the pycnogenol/arginine study, but am always looking for new alternatives.
Sounds interesting ... anyone have a reliable online supplier of Korean Red?
Nemo,
GNC sells 30 viles of Korean Red. They usually only have a few boxes and the clerk I asked was unfamiliar. I had to find it on the shelf. It is a fairly large green box with 30 separate viles in liquid form. The brand is Prince of Peace and is labled "Red Panax Ginseng Extractum". The company refers to it as "Chinese Red Ginseng" but the Panax Ginseng is the only variety you want and it must say "red" which denotes the method of extraction.
Thanks, as always, Hawk.
Nemo
By the way, have any of you who take Horny Goatweed had any side effects to speak of? I quit taking HGW AND yohimbe quite awhile ago when I found myself unable to sleep at night and feeling like my heart was constantly racing. Hindsight being 20/40 (mine at least) I'm thinking it was probably just the Yohimbe. Any happy Horny Goatweeders out there?
It was almost certainly not the HGW, and almost certainly WAS the yohimbine (or yohimbe), which has some alpha adrenergic positive effect, I believe. I would avoid Yohimbine personally for issues of quality of preparation.
Yohimbine is an alkaloid extract of Yohimbe bark. The Yohimbine may act like aphedra or caffeine and add to an overloaded system as a stimulant.
Interestingly, I have been able to correlate activity of my Peyronie's with stress and caffeine intake. For that reason I have mostly quit it. I continue to have a Latte on Saturday morning and to enjoy green tea.
Here is a Safety comment on a weightlifting website:
http://www.ironmagazine.com/review10.html
Safety:
As the number of yohimbe products on the retail market increases, concerns about their safety are raised because of the reported toxicity of yohimbine (the major alkaloid of the plant). Reported side effects from yohimbe use include minor complaints such as headaches, anxiety and tension to more serious adverse events including high blood pressure, elevated heart rate, heart palpitations, and hallucinations. People with high blood pressure and kidney disease should avoid supplements containing yohimbe as should women who are (or who could become) pregnant (due to abortion risk). Also, caution should be used with yohimbe taken in combination with certain foods containing tyramine (red wine, liver, and cheese) as well as with nasal decongestants or diet aids with ephedrine or phenylpropanolamine (which could lead to blood pressure fluctuations). Occasionally, yohimbe is combined with serotonergic supplements (such as St. John's wort or 5-HTP) to increase their effectiveness. It is not recommended to combine yohimbe with other anti-depressant supplements or medications except under the advice and supervision of a nutritionally-oriented physician.
Yohimbine was actually an old prescription drug used to treat ED. These days it has been virtually abandoned by the medical profession due mostly to a distaste for its nasty side effects and doubts about its safety. I find it amazing that its herbal analog (the refined product itself cannot be legally sold) is still pedaled by the supplement industry. There are lots of good and effective supplements out there, but in my opinion, Yohimbe is not one of them. On the other hand, HGW/Icariin is quite well understood and has a pretty good track record in terms of safety. Its effects parallel that of Viagra, Ciallis, and Levitra, with similar benefits and risks. Yohimbe is a totally different animal with all kinds of risks and unknowns. I advise people to stay away from it. - George
Has anyone whos been on pentox for a significant time seen any results from it? How many people here are currently on the drug?
Comeback
I have been on Pentox for 6 months 2 x 400 mg daily along with the other supplements recommended here (vit E, aginine) I have not seen any imporvements yet. I want to probably try it for a year before I make a decision on wheather to continue taking it or not.
Comebackid, are you on Pentox ? how long ? and have you seen any improvement ?
Regards,
Pal
Levine has me on Meloxicam 7.5mg twice daily to controle the excruciating pain from the inflamation. I've been on it five days now and no relief from the inflamation pain.
Anybody had any experience with this drug? Anybody know how to stop the inflamation???
Fish oil (hi Omega-3), flax oil (hi Omega-3), Mangosteen Juice and low glycemic diet. These are some things that will help to knock out inflammation. Fats and oils that are high in Omega-6 will aggravate inflammation and so will high glycemic, sugary foods. Aloe Vera Gel also has systemic anti inflammatory properties. And the faster you get the inflammation under control, the less problems you will encounter later. - George
Jxyz:
I have been on meloxicam 15 mgs now for quite a while for arthritis. Have had no specific side effects from it other the usual gastro problems associated with most anti inflam meds. I take an OTC heart burn tablet before breakfast to counteract the gastro problems and it works great.
I took 7.5 mgs of the Brand name Mobic (meloxicam is its generic) for several years and had to up the dose to 15 mgs and then it went generic. My drug insurance only pays for generics when they are available.
Old Man
I think his problem with Meloxicam is NOT the issue of side effects. I think his complaint rather is that it is not working for him.
George999:
Mobic/meloxicam was developed mainly for arthritis, but it is also used for most any inflammatory problem. As you said, I do not see where it would do any harm for Peyronies Disease, but I have doubts as to whether or not it will help with the cuve/bend and nodules, etc.
It should provide good relief from the inflammatory symptoms though.
Old Man
Has anyone tried Mederma or some other scar tissue med? I know it is for scars on the surface but maybe it could leach under the skin?
I've used Mederma for a scar on my face, but I don't see any way it would penetrate that deep ... at least that's not what it's designed for. It's purely topical, as I understand it. They couldn't even prove Verapamil could penetrate, and it supposedly had "carrying agents" designed to do so ... Mederma doesn't have those to my knowledge.
Did you guys see this news??
- Revision of PDE5 Inhibitors to Include Risk of Hearing Loss
- New hearing loss warnings set for Viagra, Levitra, Cialis
http://news.google.ca/news?oe=UTF-8&hl=en&tab=wn&ie=UTF-8&ncl=1122331022
What does this mean for users of Horny Goat Weed... since it is also a PDE5 inhibitor? Shouldn't one be concerned if they use HGW since it acts in a similar manner as Viagra etc, about hearing loss?
I was on the pentox, but had to stop as i picked up a virus and I was fearful that pentox was weakening my overall immune system. I have temporarily stopped it, but saw positive improvments from it. Now that I'm off it I'm trying to determine if those improvments are permanent or not. I will go back on it soon for a long time and stick to it no matter what. I was on it for about 9 months straight, didn't have any side effects or anything so that was good!
Comeback
Comebackid,
how soon did you see improvement while on Pentox ?
You said you were worried about imune system effect, do you feel better about that now ? I got a little worried when I saw your previous post about this. My family doc says he has people on it for years. I am going to try to stick with it for a year and then decide based on improvement.
Thanks
what it means is that according to the report I saw, literally millions have taken prescription strenght PDE5 inhibitors and so far, about 29 have reported a hearing problem. It was probably just their defense because they had an erection and the girl kept saying "NO!" ;)
In all seriousness. There is more chance you will be distracted by your erection and fall down the stairs and break your neck. When you move away from prescription strength pde5 inhibitors to HGW weed, the likelihood is beyond ridiculous. This is a case of the FDA covering their butt and throwing it on the list. By their own admission the FDA said:
Quote'We do not have the necessary information to ascertain that the loss of hearing is indeed linked to the use of these drugs,' said Robert Boucher, the FDA's otolaryngologist. 'But there is enough to make us be wary of the phenomenon.
You mean some older men who have ED also have a hearing loss? How weird is that? What ARE the odds? ::)
Does anyone know where I can buy Full Spectrum Vitamin E that does not contain soybean oil? I'm having the hardest time finding it.
It may be that certain Vitamin E 'tocos' are typically derived from soybean oil. NOW brand Advanced Gamma E Complex available from iherb does not contain soybean oil, but does contain "soy derivatives". But its base is made up of rice bran oil and red palm fruit oil. - George
Why avoid soybean oil ???
Hawk,
I am allergic to it. I already knew that when I purchased a bottle of full spectrum E from the healthfood store and took it without reading the lable. My mouth swelled in about one-half hour. I don't know why I developed an allergy to soy. My sister eats a lot of Kashi products, which are soy based, but she broke out when she drank the brand of soy milk called "Silk". I guess I could take benadryl to counter the swelling.
My wife has an intolerance to soy products, even products with trace amounts. Things containing soy products cause nausea among other things for her. What is frustrating is trying to find soy-free products at a main line grocery store. You will not, without extreme luck, find a package of cookies without soy products in them. So, instead of driving all over creation looking for soy free cookies in our small town, we make lots of cookies ourselves lol. Soy is added to so many food and supplement items now that it is challenging to find soy free products. Just a soy FYI.
HI, I'M VERY NEW TO TALKING ON THE COMPUTER,BUT I HAD TO TALK TO SOMEONE ABOUT PEYRONIES . I TOLD MY DOCTOR [DO.]THAT I HAD A BENT PENIS AND SO ON?HE TOLD ME I HAD PEYRONIES . TOLD ME TO FIND A URLROLOGIST BUT IT WOULD BE A WASTE OF MY TIME AND MONEY THAT THERE WAS PRESENTLY NO CURE OR HELP .I'M A 58 YR. OLD AND BELONG TO A GYM.I WANTED TO GET STRONGER AND MORE MUSCLUAR SO I BOUGHT A TESTOSTERONE STIMULATOR .LET ME TELL YOU ,MY PENIS WAS QUITE BENT BUT NOW IT'S STRAIGHTER THAN EVER !!!!!!!!!!! MAYBE I GOT LUCKY OR MAYBE I FOUND A CURE !!!!!!!!SOMEONE PLEASE REPLY.
MOVED BY MODERATOR
John
Peyronies is a disfiguring decease. 12 years ago my curve went away after Uro treated with Vitamin E & Potaba. Next came ED and not vent V, C,or L helped much tried trimix shots with little to no success. Penis shrunk by bout 25%.
Failed attempt at implant 2 weeks ago (See Peyronies Surgery).
Find a GOOD UROLIGIST and if shrinkage starts get an implant as soon as possible.
My $.02
Jack
MOVED BY MODERATOR
It truly is in MANY products, plus I live off of soy; (soymilk, tofu, soybeans, soy meat substitutes)
John,
Welcome to the forum.
I can assure you you did not find a cure for Peyronies Disease. I am interested in what you mean by a testosterone stimulator. Do you mean a supplement that is supposed to increase testosterone production?
Also, as a friendly tip, do not type in all caps. On forums or chat rooms, it means you are screaming.
John S.
Can you please tell us a little more about your history and how you got totaly cured by the testosterone simulator ? things like how long did you have the disease before you used the simulator ? what symptoms did you have? have you taken any meds ? Also, how long did you use the simulator etc ?
JackP,
I agree with you about getting to a urologist asap, however I disagree about the surgery. Surgery should be the last resort in my very humble opionion.
Best of luck
MOVED BY MODERATOR
John,
How did your curve start? Did you have an injury? Did you feel plaque (hard nodules)? How long did the curve last from the time you first noticed it until the time it went away? Could you have had an injury that resolved itself?
BTW, IMO, You got lucky! :) ;) ;D
Though I find this hard to believe, somehow I don't find it surprising either. It is an open secret that large numbers of men these days are walking around with low testosterone levels. And low testosterone is linked to metabolic syndrome which is being observed even in preteens these days. I, myself, spent a short time taking a "testosterone stimulator" with what I observed to be hugely beneficial effects. I am still enjoying a markedly increased energy level as a result. But I had to give it up after a few days because I started out taking too much of it (half of what the label suggested) and it seemed to cause my blood pressure to shoot up. But what I really want to know is John's secret here. That is, what product he was using precisely in order to push up his testosterone levels? And I think that is what we are all really curious about at this point. I am wondering why he did not include that information in his initial post???? - George
Gents, I've searched this forum, and find things referencing the usage of viagra and L-Arginine simultaneously, but can't find a definitive answer. Here's my question.
I am taking 6 500mg capsules of L-Arginine a day (3 2-cap sets). I also use 25mg or 50 mg of Viagra for sex, as the Viagra gives me a better erection (my lasting symptom of Peyronie's is an inter-septal lesion that keeps the head from getting as hard as it should.) The Viagra helps this.
I see references to a Pentox/Arginine/Viagra usage, but I've also seen things on the internet contending viagra and arginine shouldn't be taken together. So is it the consensus on this forum that the two are safe to take together? I find the Arginine gives me night time erections (which I haven't had much since my Peyronie's) and it seems to make my penis enjoy greater blood flow during the day. It seems fuller a lot of the time.
Since viagra allows you to better use NO and arginine helps you produce NO, I'm thinking they make a good pair. Is this notion correct? Is Dr. Levine or anyone in the medical community endorsing this?
Thanks guys,
Nemo
QuoteSince viagra allows you to better use NO and arginine helps you produce NO, I'm thinking they make a good pair. Is this notion correct?
You nailed it. This is the thought. The only problems I've heard (outside of the Viagra headache) are with the stomach and that is the l-arginine.
If you search the internet long enough, you will find someone claiming anything you can think of is bad for you and causes 50 bazillion symptoms which is a syndrome no doctor has ever heard of and can only be cured by taking some herb or potion or rinsing your colon with somthing (I always thought Dr. Pepper would make for a great colonic). Sometimes the FCC makes idiotic warnings for idiots who like to sue and the idiot courts and juries who award them mass quantities of moolah for being idiots.
This has been your happy thought for the day. ;D
Nemo,
I understand that Dr. Lue, Dr Levine, and a smattering of other innovative Uros recommend this combination.
I have absolutely no medical training but i will share my lay understanding. The standard precautions provided by a pharmacist for Viagra and other PDE5 inhibitors clearly state that they should not be taken with nitrates such as taken by heart patients and that they should not be taken with nitric oxide donor which I am sure arginine is. The risk is a serious drop in blood pressure however I think this risk is very minimal with 25 and 50 mg doses of Viagra. I have taken 3000 mg of arginine at the same time as a 100 mg Viagra with no negative effect. It definitely enhanced the Viagra effect. I do not recommend this however due to the warning. I may have been lucky and it was a risk I was willing to take at the time in the period after recovering from prostate surgery.
The Viagra portion of the PAV coctail recommended and prescribed by doctors is 25mg daily.
I guess you could check your BP with a cuff to see if it drops significantly.
Thanks guys - that's what I needed to know. I appreciate it.
nemo
The urologist from UCLA had prescribed pentox (400mg x 3) and L'arginine 1000x2 (like many are taking), along with cialis (10mg) to be taken on a daily basis (although I do not have a partner).
The BIG problem was the cialis, which caused constant problems with sleeping accompanied with major sinus stuffiness. Levitra was then prescribed resulting with the same unfortunate side-effects - will try Viagra next, but not encouraged. A friend had suggested an herbal alternative, but that one has Yohimbe, which again is energizing. If working a fulltime job was not an issue, perhaps I could take ED meds nightly and eventually my system would adapt. Presently considering taking cialis with either ambien, klonapin, or even trazodone (although I unfortunately don't respond to the erection side-effect, it does sedate).
Surprised I find so little about these side-effects of cialis, etc. on the net concerning sleep problems and sinus disturbances. Any possible solution one's discovered for some combination to tolerate such side-effects? Thanks - could really use the input (the doctor is not overly responsive).
MOVED BY MODERATOR
I moved about 7 or 8 posts from this thread to the "Erectile Dysfunction" topic since they dealt exclusively with ED drugs and supplements and side effects.
Pretty much what we all collectively thought...
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17706714&ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
Studies are interesting and even informative, however, it is important not to read too much into them. For example, the study referenced by roadblock doesn't seem to indicate whether full spectrum E including Gamma was used or just the usual synthetic Alpha. In all likelyhood it was the latter, which I have long considered as useless as a placebo. There is at least one study that indicates that some people do not even assimilate the synthetic stuff, let alone respond to it in any meaningful way. The conclusions found in abstracts can be interesting as well, but often the interpretations of the research team end up being myopic to the point that the raise more questions than they answer. Right now, for example, there are dueling studies going on regarding whether obesity causes cancer. Some of the studies demonstrate that it flat out does, while others "prove" that it doesn't. The devil is in the details. One has to carefully go over how these studies were done in order to discover why the researchers involved end up with opposite conclusions. So don't assume that one study has all the answers. Vitamin E is certainly no silver bullet, but I wouldn't write it off completely just yet. - George
Click on the link posted by roadblock. Then look at the "Related Links" on the right side of the page. Click on the first link and you'll see another, completely contradictory study concluding that propionyl-L-carnitine (and verapamil) actually are effective.
These studies are mostly junk - I've been reading them for years. The one consistent pattern I've noted is that lots of things - Hyperthermia, propionyl-L-carnitine, verapamil, ALC - work if you're in Italy. Oh, and transdermal Verapamil works really well in San Antonio.
Well ok I shouldn't say "junk". Some group of MDs has an idea, rounds up a few patients, and gives it a try. No doubt they have the best of intentions. But the number of patients is too small, there are no controls, and there's a lot of self-reporting and self-evaluation by the patients. In the end, nothing is proven; at best a treatment possibility is raised. The researchers get a paper published and the idea is forgotten. Nobody really benefiits.
Any reliable research linking the two? I've read that there might be some linkage but I can't find anything reliable. I've been on beta blockers for 20 years. I asked my cardiologist about an alternative. He said "no, beta blockers work too well for you!"
I've been on Glucosamine and Condroitin along with MSM for 6 years. I stopped it all during the 14 months I wasted time with Verapamil and PDLabs. Started it again because for me it was helping with joint pain. Any verifiable relationship among these supplements and Peyronies?
Google on "glucosamine chondroiten dupyutren's".
Quote from: j on November 08, 2007, 03:36:31 PM
Google on "glucosamine chondroiten dupyutren's".
Thanks. I checked a number of them out. I've concluded for me there's enough anecdotal evidence to stop these supplement. I know stopping won't guarantee a cure for my Peyronies but if there's a trade to be had I'll take a little more arthritis pain for a little more straight erection gain.
Quote from: Univesity of Washington School of MedicineA number of variables have been associated with a higher likelihood of Peyronie's Disease amongst population of men. These include a history of Dupuytren's Contractions of the tendons of the palms of the hand, use of beta-blocker drug therapy, and hypertension.
http://depts.washington.edu/uroweb/ptcare/diseases/peyronies.html (http://depts.washington.edu/uroweb/ptcare/diseases/peyronies.html)
Quote from: Medicine NetA number of drugs list Peyronie's disease as a possible side effect. Most of these drugs belong to a class of blood pressure and heart medications called beta blockers.
http://www.medicinenet.com/script/main/art.asp?articlekey=21756 (http://www.medicinenet.com/script/main/art.asp?articlekey=21756)
Quote from: Arthur Smith Institute for UrologyThe cause of Peyronie's Disease is unclear. In the past, it has been associated with vitamin E deficiency, use of beta-blocker drugs such as metoprolol, and elevated serotonin levels.
http://www.smithinstituteforurology.org/patient_men_peyronies.html (http://www.smithinstituteforurology.org/patient_men_peyronies.html)
Most Beta Blockers actually list Peyronies as a possible, though "rare", side effect. - George
Gents, I've just ordered some Vasoflow. I've been taking 3-5mg of L-Arginine a day with what I consider some pretty good results. Better "fullness" during the day, which has to be good. Some nocturnal action, which also is good. I've read Vasoflow is the best arginine available and want to give it a try.
Can you tell me what dosage of Vasoflow would be equivalent to the 3-5mg of L-Arginine I'm currently taking?
Thanks,
Nemo
Each Vasoflow softgel has 500mg of Arginine. The recommendation on the box is for bodybuilders. A few people on this board use 1 softgel 2 or 3 times a day on an empty stomach.
My experience with Vasoflow is that I could not sometimes even take 2. It has a terrible smell ( hard for me to explain.) I still use it though, and hope that it is helping in a way. I think a few folks here have good results with it.
Any one else noticed the strong smell of Vasoflow ?
Thanks,
Pal
Sorry, I meant to say I take 3-5 grams of arginine a day, not 3-5mg. And my arginine comes in 500mg capsules, so it sounds like Vasoflow is in the same format.
Nemo
The deal on VasoFlow is really twofold. First of all, it contains added ingredients that block Arginine resistance. That means that if a person is Arginine resistant due to the presence of Arginase, VasoFlow will counteract that effect and the result will be that one would need a far smaller amount of VasoFlow as compared to plain old Arginine. The difference will be determined by the degree of Arginine resistance one has. In my case I simply can't get enough Arginine to be of any use, but three VasoFlow softgels do it for me. You simply have to experiment with it. The effect will be obvious. IF VasoFlow is not working significantly better for you than standard Arginine, you may be better off with standard Arginine and saving yourself the extra money. But there is a second benefit to using VasoFlow. That is the fact that it is a time-release Arginine formulation. This means that if you take it three times per day, unlike standard Arginine which releases all at once in a flood, VasoFlow releases over an extended period of time for a prolonged effect. So both of these issues need to be considered when deciding between VasoFlow and Standard Arginine. In my case, I also find the softgels easier to swallow than the traditional tablets. In my case I never noticed the smell until pal brought the issue up. But now that I carefully smelled it, it does have a rather pungent oder, almost like mothballs. It must be from one of the added ingredients. - George
I take 2 Vasoflow capsules 3 times a day. I usually do this after eating because I sometimes get some stomach upset if I take it on an empty stomach. My first experience with arginine was with GNC 500mg capsules. It gave me very noticeable fullness within an hour of taking it but that decreased slowly after about a month. No switch in products has brought that back, at least to the degree it was. The one thing that remains is that it does enhance the effects of Viagra although it may not be advised to take full doses of them together.
The smell of Vasoflow (if you stick your nose in the jar) is almost a chemical smell. I am not sure if it is the Vasoflow or the softgel capsule.
Sorry to bring up the smell issue guys. I think what got me was that when I recieved my order of vasoflow, I opened the jar, got close, and smelled it and I guess since it was closed the smell was just too strong. I will continue to take it for now though.
what about just using bulk AAKG?
Arg. I went to the only natural vitamin store I know of in my area, and was shocked to see the prices listed on the vitamins! Between the full spectrum Vitamin E, L-Arganine and Paba (hey, I figured why not?) I was charged 40 dollars. And I wanted to pick up a bottle of L-Cartinine, but that bottle alone was 60 dollars!
Do any of you know of an online shop that sells the necessary supplements to combat peyronie's at a cheaper price? I just graduated college and can't really afford these astronomical supplements. The E was reasonably priced at 13 dollars, but only for a bottle of 30 pills. I'm searching the interwebs for prices, but maybe you guys can point me to your suppliers...
Quote from: Hitman on November 10, 2007, 03:36:10 AM
what about just using bulk AAKG?
The generic Arginine formulations are fine for people who are not Arginine resistant. The bottom line is, if it works well for you, there is no reason to change. But some of us have problems metabolizing the generic formulations due to an Arginase factor. And it is probably not a good idea to be taking massive amounts of Arginine in order to try to overcome that. In those cases, VasoFlow shines. - George
Quote from: ocelot556 on November 10, 2007, 12:38:28 PMDo any of you know of an online shop that sells the necessary supplements to combat peyronie's at a cheaper price?
I use iHerb in the Los Angeles area. They provide a wide selection of products and brands, great service, and great prices. (http://www.iherb.com (http://www.iherb.com)). - George
Thought you guys might find some interest in this article.
http://www.msnbc.msn.com/id/21758130/wid/11915773?GT1=10613
Comeback
Hi guys!
Been away for a while, trying to overlook my curve problem, but after a while I guess I'm looking for solutions again... :-\
I try to exercice physically again to feel better mentally.
I know I'm a "brain man" (I just mean my brain never stops, can't help thinking...) and I've started working on that, I'll see a psychologist to see what I can do to relax a little more and to take life as it comes.
But there's a but... for the past months (let's say 1 year roughly) I can feel it does take a lot more time to get an erection when I'm with my girlfriend.
Maybe it's all in my mind, the fact I've almost no sexual need. I even tried watching "adult movies" to see if it was a problem of lack of desire for my girlfriend, and I can see the sexy babes don't help much either... It just takes more time...Don't know if it's in my head?? Also, the top part of the penis is a lot harder to get hard (no pun intended :D), it feels like my penis is split in 2 parts in the middle, if you know what I mean... ???
It's either some ED problem, or it's all mental and I've lost my much of my sex drive... I'll see that with a doctor I guess.
Since I feel pain most time when having sex (since I was 19), maybe this decrease in sex drive has been conditionned by the pain I get from having sex.
Sorry for the long stoty, just needed to give you the background.
My question is: by taking supplements like Ginseng, ginger and what are called in French "adaptogene" herbs, I wonder what would happen if I stop using the supplements. Can the "natural" supplements be taken on a 365 days a year routine?? If yes, does the effect decrease as time goes by?
What are the risks of these supplements, and can they be taken everyday for years??
ComebacKid, nice article, but now I wonder where I'm gonna buy these supplements :D You can't trust what's written on the package :-\ Damn money-makers.
Ninja,,,
When you go to the doctor have him check your Testosterone level's, many times if it's low it will affect your sex drive. And you may not have a sex drive...I've been through all of this before..When i have the money for my testosterone patch i will have a good sex drive and good feeling in my groin area, without it i have none....
I have found that the Androderm patch works really good and it's easy to use,,once a day....
Good Luck man,,,,,,,,,,,,,,,,,,,,kimo
Ninja, I'm in roughly the same boat. Distal rigidity (firmness of the penis head) is the problem a bout with Peyronie's left me with a few years ago. The head just doesn't get fully hard anymore. This makes the erection a little more "high maintenance," in that it requires fairly steady physical stimulation to stay hard ... if I don't get any stimulation for a minute or so, it will start to wane, but come back with some stimulation. I am also taking longer to get hard than I used to.
I think you'll find the ED drugs like viagra, cialis or levitra to help with this. They get more blood into my penis, and make it less high maintenance. I also take L-Arginine, which seems to help blood flow to the penis, as well.
Finally, like you, I worry about long term usage of any and all of these aids. I'm 36 and am scared about becoming dependant on anything, but it's kind of a Catch 22, if you need the help, are you going to deprive yourself of it just because of anxiety over the future? Trust me, I wrestle with this to the point that I think I've developed some performance anxiety. Like you, I think too much.
Good luck though, brother. There are options out there to explore - at least we're lucky in that sense.
-Nemo
Thanks Kimo for the testosterone check. I did it once, not for Peyronies, and it showed that it was "just" normal, right on the lower average.
I remember my brother looking at the paper saying "man, I thought you would pack up testosterone like Mike Tyson!!" and he laughed.
That's only months after that, by coming on this forum, that low testosterone could mean low sex drive, less erections and just more trouble >:( I've always been a careful, sensitive guy, so I guess that also accounts for low testosterone (but I may be wrong). I'm never angry and so on, contrary to guys who pack up lots of testosterone.
Well, I'll check these levels again. I hope that crap Propecia stuff I took years ago didn't start this mess. Anyway, doesn't matter, I've got to deal with this.
Kimo, I heard testosterone patches could make you sterile, or at least would prevent your body to produce your "natural" testosterone.
Is it true? Cause I'd like to have kids, and I don't want something also that would "freeze", or destroy my natural testosterone levels... :-[
I'll look for natural supplements in the first place... and I'll cross my fingers.
Nemo, the performance anxiety (I know what it is :-\) can destroy your mind and ruin your self-confidence. You should see a psychologist or a sexologist to work on that (I'm planning to do that too). You can send me a PM if you want, we can share a few words on your problem, which seems to be one my symptoms as well :D
I suggest you take some supplements to increase blood flow (there must be some people on this forum who have experienceon in that field, maybe George999).
Nemo, I try to take life as it comes now (it's hard due to my psychological nature), but now it seems that crap can fall on my head like the Niagara Falls, I'm just waiting, I've lost some of my illusions of a bright love life with my girlfriend. I may have many partners because of this problem, and I sure don't like that, cause I'm a romantic guy, but... I'll take the blows if they come.
I know I'll be rocked like hell, and I know other things will happen, but I'm trying to get prepared for that. Maybe this condition helps us understand that nothing lasts forever anyway ::) I guess we should not be scared, and work on taking life as it comes.
If you're really an anxious person, please do me a favour and work on that (supplements, relaxation,...) cause all I know is that worrying is pointless. Things that shall happen will happen, don't worry, you'll find a solution, mate.
Hey, thanks Ninja. I think if I could convince myself that it's "OK" to take Viagra because it makes my erections better, and because damnit, I do have Peyronie's, I'd have less anxiety. For some reason, I feel like I'm cheating using a pill to "be a man."
For the first few times I was with my current girflriend, I used the Viagra and was in heaven - it was like having my old penis back. But then, when we started getting serious and sex was more and more frequent, I started worrying about long term use, will it diminish over time, will I develop a tollerance, etc. That's when the probs started in my head. She's totally supportive, but now when I know we're going to be having sex, I immediately start thinking, God, I hope the V works again this time. That is a sad thing to think when you know you're getting sex!
I think once we're living together, I'll likely try to wean myeself off the Viagra. As it is, when we only get to see each other once or twice a week, I can't bring myself to risk failure, as failing once (while not on Viagra) really freaked me out, and I keep living trying to avoid that pain again. It's frightening and frustrating what the mind can do to you. Erection-world is the one area in life where simply worrying can actually make the event you fear happen.
Ninja,,,,my first URO told me that my testgosterone was just normal for my age,,,that answer was not sastisfactory for me...So thats when i changed Uro's....My next uro said it was low and we could fix it. I did start out using the Androgel for the first year, and it took it up to high..First as numbers go;;;i was told that 800 was normal for 20 yr old and 200 was considered zero,,mine was around 250...I had no sex drive and no tingling in my groin.
After being on the gel for about 8 months my numbers went up to 830 and i was climbing the walls, sure it felt good but my sesx drive was driving me nuts,,,no pun intended....Thats when he put me on the patch and it brought me down to around 700 and i felt more normal and the numbers stayed at that level....
Nemo,,,,you should not be worrying about performance, worry will make it worse, trust me i've been there..I had to end up going to a sexologist because of that very reason,[ worry ]....He told to learn to relax and things would come back,,and it did.......And,,i've been taking viagra and levitra now for 10yrs, it is NOT addicting. I take the amount i feel i need according to how i am feeling,whether its 100mg, or 50mg or25,,you get to know what your body needs and just follow that and you'll be ok...Sometimes i don't even need it....
kimo
Thanks Kimo!
I'll be unemployed at the end of the month, so I'll take some time to see a psychologist and probably a sexoligist if nexessary. But the priority for me if to check these hormone levels.
Thanks again for your info. If its bad news for me, I'll try to find some natural stuff before asking for hormone replacement therapy (in last resort).
Nemo, as Kimo said, worrying kills! :D Trust me I'm a specialist about worrying since I'm a kid. At 25 I'm working on that cause I know I'm fueling a vicious circle. And you're doing that too. If you can, take some time with your girlfriend away from home and from your work, take a break, and you'll see how relieved you can get mentally.
You have to shut down you brain when worries happen in your everyday life, and take life as it comes. I know it's hard, especially if you worry all the time, but with a psychologist you can do a lot of work. If you can do that, at least you'll walk the path out of that vicious circle. Please get some counseling, I'm sure it'll improve your life in general.
And one last advice, run away from people or things that have a negative effect on you.
Stick with the cheering, positive people, forget about the others. You have enough things to take care of, don't stick with joy-stealers.
Stay positive! (even though hard to do, that's the best advice I got from many members of this forum. Being negative makes things worse, and what shall happen will happen anyway)
By the way, your girlfriend is supportive, that's a great asset on your side. I wish my girlfriend was supportive, but I think she just makes things even worse ;D ;D ;D
Guys, any ideas on natural supplements to increase testosterone level or sex drive??
has anyone here tried enzymes serrapeptase or nattokinase? theres supposed to improve blood flow and eat away at fibrin tissues to my understanding.
when i type in peyronies disease at google it brings up a pill called Neprinol that has both enzymes. does anyone know anything about Neprinol or enzymes that could give me some insight/recommendation?
thanks
There has been a great deal of discussion on these supplements. Tryusing the search function. I searched Neprinol and got 2 pages of results.
WGW,,,
About vita-E.....Yes, the natural is the best but you should becareful how much you take and for how long...It's my understanding that Vita-E is a blood thinner...I took 400 to 800 iu's for about 6yrs and was really getting light headed and didn't understand why until i found this out...I stopped taking it and it went away,,,i was dizzy all the time and it's not a good feeling....I think that the E helped some, but be careful how much you take.
This is just my opinion,,,,,,,,,kimo
WGW:
Kimo is right about the vitamin E dosage. It is a blood thinner and over extended periods of time toxic buildup can occur and lead to further medical complications.
In my case, I took huge dosages of E when first trying to get rid of my Peyronies Disease around the age of 50 or so. I had no problem then. Now that I am much older and take 81 mgs of aspirin a day for heart problems, I have to limit my daily intake of E to one 400 I.U. gel per day. In addition, I have to get liver function blood tests at least every 6 months.
So, bottom line, as Kimo says, be extremely careful to check out all the parameters of any med before embarking on taking them, etc. In other words, like the old axium, look before you leap.
Old Man
Guys, I decided to try the Acetyl L-Carnitine - just ordered a bunch. I'm already taking L-Arginine, and of course, Vit-E.
Can anyone tell me what the usual dosage ALC people are taking? I'm taking 3-3.5 grams of Arginine a day.
Thanks,
Nemo
Some of us mixed propionyl L-carnitine with ALC in an about 50/50 mix at about a total of 3-4 grams a day in divided doses.
In some folks, notably Italians, it seems to lead to improvement. ???
For those of us here it does not seem to confer the same benefits. I would definitely try it though.
Tim
I am taking 2 x 500mg Acytel-L-Carinitine daily. I have noticed the pain lessened while I am on this supplement. I am also taking Pentox, Vasoflow, and VitE with no notice of improvements yet.
I am slowlely loosing faith in this treatment but will stick with it for another 3-4 months to complete the 9-12 months window.
Best Wishes,
Pal
I tried Neprinol for 1 year. I also was taking Vit-e. Vit-c - ALC. I bought only the best and purest I could find. After I took all my pills and supplements I had no appetite for a couple of hours. I saw no noticeable results. So I found a URO who treats with topical Verapamil & ionto and am into my third treatment so far. I swear the placque seems to be getting smaller but I have had no opportunity for an erection >:( to check it out. I have added two more appts giving me a total of 7 so I will advise every couple of treatments. Don't know what I would do without all of the input I get from you guys. :) Holla back later - HASCAL
When I joined this forum a few months back, most folks here recommended I try to the PAV cocktail with traction or VED. Now, 8 months, two urologists and $700 since I was initially diagnosed with Peyronies Disease, I can't get a doctor to prescribe the P and the V. (I've already started taking the arginine and am back on Vitamin E.)
Both of the urologists I saw said they'd never heard of the PAV cocktail. The second one, billed as the region's expert on Peyronies Disease, said he and his colleagues had never heard of Pentox. He claimed they had done all kinds of research looking for it. A 10 second Google search later, I left him a voicemail politely explaining that Pentox was short for Pentoxifylline, the generic form of Trental. He never called me back. A week later his secretary advised me to try faxing information. I sent a dozen pages. He never called me back. I left an angry voicemail another week later and, surprise, he never called me back. (Gotta love this healthcare system and some of the dedicated, caring professionals who profit from it. And I'm only 28... I can just imagine how much I have to look forward to!)
What makes this all the more frustrating is that I think my condition may be worsening. I have noticed what may be a new nodule and am having a harder time achieving distal erection (that's the term for your head getting hard, right?)
So, my question is, does anyone know of a urologist in Ohio, western Pennsylvania, West Virginia, Kentucky, or eastern Indiana who is aware of the PAV cocktail and likely to prescribe it? Any help would be greatly appreciated.
OK, I don't really have a sensitivity to Vitamin E, I just can't tolerate the soybean oil in it, which all of the full-spectrum brands seem to have. In light of that fact, is it allright for me to take another form of E for treatement of Peyronies Disease. Also, If I've had the disease for two years has my plaque already calcified. What are the best treatment options for me at this point. Presently, I use traction a lot more than I use the VED. I know I've been on the board a long time to be asking these questions, but here I am.
boodoo2u:
Concerning which vitamin E to take, there are several varieties on the scene. Since you can not tolerate the soy bean variety, try other regular brands. I had stomach problems with the high potency varieties. I take the regular E OTC from Sam's Wholesale Club with no problem. The gamma versions are the best, but if you cannot tolerate them, try the others, etc.
Now, about the VED versus Traction therapy you mentioned - based on my experience along with others on this forum, I strongly urge you to use the VED therapy each and every day. Consistency in VED therapy is the key to success with it. Traction has its place in Peyronies Disease therapy, but you should endeavor to use the VED on a regular daily basis along with the traction.
Constant stretching the penis with a VED on a daily basis affords a better atmosphere for helping with Peyronies Disease symptoms. So, again, I urge you to try the daily routine for a while (several weeks at least) before reverting back to the traction and spasmodic use of the VED.
Regards, Old Man
Hi all,
After moving sideways for a while with some subtle improvement which I personally attribute more to diet than anything else, I am planning to take my next big plunge. I am really stoked right now regarding that whole AGE scene. The diet I am on should be severely limiting AGE formation and so now I am looking at starting to take multiple supplements that are known AGE-breakers in an attempt to break up existing plaque. I find the whole AGE-breaking approach fascinating. They tried AGE-breakers in the test tube and they worked spectacularly. They tried them on animals with equally spectacular success. Then the human studies were a huge disappointment with a conclusion that they wouldn't work in "longer living" species. That is a conclusion that I find hard to swallow since it would be just too convenient a way to terminate what had previously been a promising study. There is really no evidence that they ever considered any other possible cause of the observed outcomes. Like, for example, whether the AGE-breakers might actually be working, but that the plaque creation process might be outrunning it. In any event, I want to try these substances in the presence of a rigorous diet targeted toward stabilizing insulin levels. One other thing that really troubles me about the AGE-breaker failure is that there was, in fact, at least one study that indicated that Acetyl-L-Carnitine, an AGE-breaker, actually worked. I also find it fascinating that the one product that has shown a glimmer of promise lately, Pentoxifylene, is also an AGE-breaker. There is something out there in this realm that deserves a second look and now that I have all of my other significant health issues resolved, I plan to look into this thing. - George
George,
You use the term "AGE-Breaker" and "AGE formation" like it is a term discussed a length here before or perhaps a common term that most people are familiar with. I am not familiar with the term and questioned if you were using it as the word age (meaning old) or if the letters "A" "G" "E" form an acronym since you use them in upper case.
I appreciate any clarification.
Hawk
Hawk, Its an acronym for Advanced Glycation Endproduct. http://en.wikipedia.org/wiki/Advanced_glycation_endproduct (http://en.wikipedia.org/wiki/Advanced_glycation_endproduct) It is a process that is generally associated with Diabetes, but it is also at the heart of both fibrosis and aging. Another interesting commentary is: http://longevitymeme.org/news/view_news_item.cfm?news_id=3315 (http://longevitymeme.org/news/view_news_item.cfm?news_id=3315). What is becoming more apparent is that any amount of elevated blood sugar, elevated insulin, and elevated animal protein levels accelerate the AGEing process. This whole thing seems to be really key in the case of Peyronies and we really need to get up to speed on it. - George
Here is another very good article explaining AGE: http://www.nyas.org/annals/annalsExtra.asp?annalID=28 (http://www.nyas.org/annals/annalsExtra.asp?annalID=28)
Does anyone here still take colchicine? How long have you (or had you) taken it and can you attribute ANY improvement to it? I have been taking it as well as pentox and although the science behind pentox makes more sense to me, I dare say either has done much.
California,
I took it for 60 days way back in the beginning but it was suspected that by white blood cells took a significant drop so they took me off of it. In retrospect my family doctor says my white count is usually borderline low and he thinks it was in a high spike when Dr. Mulhall took the initial blood count.
In any regard, i cannot say that I could tell colchicine did anything but I had ED issues from prostate surgery and it may have stopped the progression of Peyronies Disease for a time but it is hard to say. Colchicine can have some nasty side effects so stay on top of blood count etc. It can also cause hair loss. It is almost like chemo.
I think 60 days or even 120 days is way to soon to evaluate pentox.
Hello,
Concerning pentox, as anyone had any good returns or personal improvement from that?
I've taken it for 2 months (with vit E) -so by the way i listen Tim's advice- , and my doctor knew that concerning fibrosis in general, she told me she had already healed some cases of real fibrosis , but she had no clue about penile fibrosis, she only knew for fibrosis in the shoulder or back. I have for the moment no positive effect at all.
Concerning viagra daily , i'm scared too by side effects at long term (the generalist doctors told me to really avoid it). But i replace it by cialis , that we can take less often coz the effect stays more longer. Do you know if both cialis and viagra have the same suposed effects to help VS penile fibrosis, combined with pentox and vit E ? Or if its ONLY viagra which is suposed to help?
Also do you know if it's possible that the WHOLE "structure' of penis has changed? i mean i have big loss of size, girdth, etc, but even the form at flaccid and elasticity have changed so much, i mean is it possible not to have a 'plaque' or even 'several plaques', but a total change of the tunica and corpus, that would have gone from a 'spongie tissue' to a hard tissue (but not only at one or 2 areas but everywhere -don't know if it's clear?)
thanks
Hi Antony and everybody ,
About using Cialis or Viagra on a regular basis(cialis every 2 days or so) ,I have heard this recommendations some times and considered it. it has some similarity to the Pentox (pentox is PDE4 inhibitor and Viagra/cialis/lavitra are PDE5 inhibitors). however ,those PDE5 inhibitors caused me weird side effects like flush on the face ,headaches ,weakness of muscles or fatigue of muscles and red eyes.so I used them only occasionly ,rather than daily. Another thing that really prevented me from using it on a daily basis was the phenomena called "NION", which has been reported by patient who used it too often (it is a stroke of the eyes -- causing blindness).whereas I am aware of the rarity of those occasions ,it is still bothering when you consider using it daily.
About the whole structure of the penis - I have exactly the same phenomena of Defused plaque which is anywhere ,rather than hardened specific areas.
Following George's advices I try to lower the sugar in my diet. it supposes to help preventing maybe farher progress of the plaque.
As far as I heard ,there may be two kind of plaques/fibrosis in the penis. a focal (a plaque in a specific area but not in most of the penile tissue) and a diffused one (meaning it may be found in wide areas of the penile tissue). I can logically assume that the impotence in the latter cases should be more severe (as in my case) ,since a wider area of the penile sponge tissues become inelastic and thus unable to push back and shut the vains which drain he blood out of the organ.
All the best,
Ron
It is pretty much proven that Pentox attacks fibrosis in general. My observation is that if ones body is creating plaque faster than Pentox can resolve it, Pentox won't help an awful lot. There is a whole lot of positive research out there concerning plaque busting. I am convinced that the problem comes when the process of plaque creation is outrunning the efforts to dissolve it. ALL plaque has one thing in common. It is created when glucose attaches itself to protein and forms abnormal tissue. In the case of Peyronies the protein involved is collagen and the process is referred to as Glucose-Mediated Crosslinking of Collagen. It is basically modulated by the amount of glucose available in the tissues, which in turn is modulated by a person's total caloric intake. *This means more than just sugar - REMEMBER - the liver manufactures glucose out of fat and even protein if necessary and if your diet is high in ANY kind of calories, your body will turn that into glucose which will fuel the problem.* The process itself generates inflammation which is why people with higher caloric diets have a greater level of systemic inflammation than those on restricted calorie diets. Unless one knows how food "works" and applies that knowledge, one cannot lower caloric intake because hunger will drive them to consume excessive calories. The bottom line is that foods that rank high on the glycemic index are calorie dense and will cause your glucose to increase. Additionally all sweets, even zero calorie sweets, stimulate hunger whereas certain other foods satiate hunger. So what you have in your refrigerator will predetermine whether you end up with an unhealthy calorie dense diet that fuels fibrosis (among other things) or a nutrient dense diet that stifles it. Trust me, there is plenty of science out there to back this up. The problem is that people want an easy solution that comes in the form of a pill and doesn't require a lifestyle change. So the answer becomes, you can wait for the magic pill, which isn't here yet and may not be here for a long time, or you can take advantage of current scientific knowledge and stand a good chance of making headway against this extremely difficult to treat disease. The choice is yours. - George
Note to Ron and everyone else. Just to clarify, it is not only sugar that is the problem, it is ALL foods that rank high on the glycemic index. Sugar and even artificial sweeteners are especially an issue because they drive hunger. But ALL high glycemic foods are calorie dense, tend to dump glucose into the body at a high rate, and problematic. Low glycemic food are OK even though they may contain sugars, because they release those sugars into the body slowly and in a way that doesn't stimulate hunger. Excessive intake of fats is also a concern and trans-fats should NEVER be consumed while saturated fats should be consumed in careful moderation. Unsaturated fats have numerous health benefits and can satiate hunger and cause one to eat less, thus lowering total caloric intake. - George
Several random notes:
NO data yet but reasonable to assume that any PDE5 inhibitor will work. Using common sense, it seems a dose that "works" for you for Viagra and for Cialis would be reasonable to transpose to this realm. Therefore, if 50 mg of Viagra works for ED, and 10 mg of Cialis works for ED, then the rule for you would be: 25 mg Viagra daily would be equivalent to 5 mg of Cialis daily or every other day. The ratios , though, may not really hold up. Rather, since we are trying to make changes over time, I would start low and titrate to side effects. I am becoming aware that Cialis (which does not cause head aches for me like Viagra) may be causing me back aches. I may try the third one - see how it works.
I bought a bunch of Cialis and it was expensive - I have been using HGW instead, and I add Cialis if things seem more active.
For George, I think that glycosolation is really important, and perhaps centrally important, but I do not think it underlies every case of Peyronies Disease. I thin there will turn out to be those who make to much TGF-B1, those who have an immune modulated cause, those who have abnormalities in glucose metabolism, and those with other inflammatory conditions.
The important things is this: what can we DO??
Dietary changes are hard, but they are something that are under our control - we can be in charge of them. And they have the added benefit that if we fail to make Peyronie's better we will make virtually everything else about our lives better while we are trying.
So George, tell me this - would you be willing to write down a typical two or three days diet for you for us to read? I am interested in what you actually eat - where you buy it, what attention do you pay to organic vs non-organic, etc. IOW - details! I know this is asking a lot of you, ut I am determined to make diet the next major change I make. I have taken this tack - I am making very small gradual changes on a weekly basis. This week, I started eating better lunches and I have been eating better breakfasts too. My exercise still suffers due to lifestyle issues (ie I work too damn much). I am sleeping better too, which has an enormous effect on my metabolism and well-being. Sleep deprivation increases one's secretion of ghrelin, which stimulates appetite (it also leads to less leptin production, as well as desensitation to leptin, leading to problems in eating too much.
So my sleep is better, and my diet is starting to improve. I would really like some ideas for what to eat to make it even better.
Thanks, Tim
Since I also have Dupuytren's (and Lederhose, frozen shoulder, Garrod's knuckles, the whole constellation) I've been interested in the insulin theory since it first appeared. Unfortunately as yet there hasn't been any clinical interest in this idea; but there's certainly a lot of research into diabetes that might apply, someday.
I'm thin and in pretty good shape; but I have to admit, I've always been the King of Carbohydrates. I don't eat sugary treats but do consume a lot of bread, baked goods, trail mix and so on. As you all know it's really hard to avoid sugars unless you stay completely away from processed/packaged foods.
Hello,
To Tim: what do you call the HGW ?
Do you mean that cialis is causing your back aches (not sure about the sense of your sentence)?
As for me, the doc wants me to take 5mg every 2 nights, coz there are new boxes of 5 mg available now. But i'm quite scared about regulare use on long term. Moreover, even higher dose helps me so few for erection that i dont know if it will really help.
What do you call the 'thrid one'?
To Georges: but what do you think about fibrosis due to bad scar after a trauma? do you think its linked to glucose or food too?
To Ron : yes i think (im sure) we have difuse fibrosis everywhere in the penis, not only isolated plaques. In fact the spongy tissue is no more a spongie tissue, its a hard tissue. And at the moment pentox does not help.
I'd like to know, has someone have an idea, if its better to try to have sex with cialis to make the blood circulate, or not to have sex for avoiding creating new scars?
Antony :
Regarding your question about blood circulation .I think you should be like a "rope-walker" here . your penis needs to get some blood circulation, however in some stages ,rushing too much blood there may cause further damage like micro injuries or so.so I do not think it would be good to stimulate some blood into the organ,but one should be very cautious with it.
Antony:
HGW is horny goat weed.
The "third one" is Levitra. Google the terms cialis and viagra and the title "Cialis, Viagra and Levitra to Treat Erectile Dysfunction" is the first hit.
Multiple prior posts about back aches for cialis:
https://www.peyroniesforum.net/index.php/topic,23.msg12002.html#msg12002
Multiple prior posts about why we take Viagra - it is not for erections:
https://www.peyroniesforum.net/index.php/topic,22.msg6934.html#msg6934
https://www.peyroniesforum.net/index.php/topic,48.msg11921.html#msg11921
https://www.peyroniesforum.net/index.php/topic,84.msg11442.html#msg11442
I don't know what to say to your concern about taking Cialis longterm. It has seemed to me that you are more afraid about never getting back your penis function.
You said "Moreover, even higher dose (of viagra) helps me so few for erection that i dont know if it will really help."
Many times we have stated that this is for anti-inflammatory effect and not for erections. In your second ever post to the forum you said,m in response to me:
"I tried to take cialis during last month two times a week. In my case, the problem is that the penis has changed of anatomy. I would say the cialis 'works', but the induced erection is now small, with curvature (not a big one, that's not the problem), paintful, with no sensation, and totally hard, with no elasticity in the penis. In fact my penis becomes very very hard and 'sticks itself' to the belly and navel (if you see the image), it doesnt go in 'normal direction' like before, i mean pointing right. There is definitely a big organic problem. It's for that reason i would like treating the fibrous tissue if it's possible, and not only take medicine like cialis or viagra, coz they are not very useful in my case."
I believed that you needed help and so I took the time to post back:
"The Viagra or Cialis is not intended to promote erection for fibrosis, but to promote healing. Getting harder erections is simply a good side effect! Rather, the viagra, and arginine promote what are called "nitric oxide" (also known as 'NO') biochemical pathways in the body. This will promote an anit-inflammatory healing, and allow recovery better than when such drugs are not given."
Since then I have said the same thing again and again.
Do you sense some frustration here in me?
All the above helpful information was easily accessible to you with doing the small amount of work I just did - for you.
I wrote the above post to you in August of this year. I have repeated it at least twice more in posts directed to you personally.
I took the time then to even add for your benefit the literature that you needed to read to learn more about this:
Valente EG et al. (2003) L-arginine and phosphodiesterase (PDE) inhibitors counteract fibrosis in the Peyronie's fibrotic plaque and related fibroblast cultures. Nitric Oxide 9: 229–244
Schwartz EJ et al. (2004) Sildenafil preserves intracorporeal smooth muscle after radical retropubic prostatectomy. J Urol 171: 771–774
Rajfer J. Gore JL. Kaufman J. Gonzalez-Cadavid N. Case report: Avoidance of palpable corporal fibrosis due to priapism with upregulators of nitric oxide. [Case Reports. Journal Article] Journal of Sexual Medicine. 3(1):173-6, 2006 Jan.
Aslan A. Karaguzel G. Melikoglu M. Severe ischemia of the glans penis following circumcision: a successful treatment via pentoxifylline. [Case Reports. Journal Article. Research Support, Non-U.S. Gov't] International Journal of Urology. 12(7):705-7, 2005 Jul.
Evliyaolu Y. Kayrin L. Kaya B. Effect of pentoxifylline on veno-occlusive priapism-induced corporeal tissue lipid peroxidation in a rat model. [Journal Article] Urological Research. 25(2):143-7, 1997
So I am frustrated because it DOES seem that you are going in circles, but not really hearing what I say. Moreover, it feels like you are essentially asking others to do your work for you. Curiosity is good, but dialog is more helpful.
This is where my frustration comes from or a sense that you need to DO something. Yes you are doing some things, but when I am asked the same questions again and again, I am not going to do all the work for you any more.
This stuff is not easy. If you do not know what an abbreviation means, do a search for the term. If you think you heard something before here, do a word search in the box in the upper right corner of the page you are looking at right now.
Read the archives. Search out confusing terms - but I am tired of repeating myself, and this is not just about the topic of attitudes and hope. I find myself repeating myself on a lot of topics.
And, perhaps, you should read this post carefully, perhaps print it out. Perhaps consider why it is that information given to you does not seem to "stick" well. That is your work. I have my own work to do now.
Tim
Antony,
I can only hope you appreciate the huge amount of work that Tim just did to help you. He gets noting in return. THAT is the meaning of compassion.
I also want to to say that I notice that you seem to want reassurance that a treatment will cure or very greatly improve you before you commit to trying it. While that is understandable, you must understand that you will not get that for your condition. We know what items MAY work. We can tell you what treatments seem to have reasonable theory behind them. We can not give more assurance than that. We are careful to recommend those things which are VERY UNLIKELY to do harm but that have some likelihood of helping to some degree. Some of theses treatments have reduced beds by way more than half in some people. Some of these treatments have helped some men to regain almost all of their size.
You cannot know the end result before you begin. If I were you, I would have started PAV and VED / traction 2 months ago.
for a definition of PAV go to http://www.peyroniessociety.org/glossary.htm
PS: I am concerned that you said the quality of your ejaculate or the actual look of the fluid has changed. I do NOT think this can be associated with Peyronies Disease since semen is produced in the prostate and sperm is produced in the testicles neither of which are affected by Peyronies Disease.
Cheers
Hawk:
But i do appreciate!! Sincerly! but I just don't understand why there is such a agressive tone. I had started to explain that just before you posted your post, so i post it, even if you will say that i complain or whatever, its not the case, i just tell what i think.
I of course not ask for to be sure that a treatment will work, when even the doctors dont help and dont know, but i ask for if people had already tried them long time, did they get a benefit?
I dont know if its because its in english and by writting, but dont 'interpret' (not sure of the word) wrongly what i say, i am really pleased for help, but of course i'm very chocked, down, weak by what happened and can't hide it, yes.
Thanks for definition of PAV.
I just maintain the response i had started to type for Tim, coz i REALLY apreciate what all you do, but i dont know why being 'frustrated' and each time speak 'cynically or agressively' , and judge what i do or think or feel.
I also know you care of us and of everybody, i have never told the contrary, on psycholigical part we were just explaning that acording to people situation and gravity of the problem, we dont live the things in the same way, and it does not have same consequences on life.
Cheers
Tim:
Thanks youfor answers, but i dont know why you use 'agressive' tone.
You say i don't listen to what you say, it's wrong, i do it (or what is the use to ask for help?)
Yes you are right that my first fear is to never recover penis function, and that is normal, so yes i asked questions in this sense. But It's also normal that i ask myself question about long term uses of cialis, if one day i recover penis function ( and i bet no), but if it's to have after heart problem or being blind at 35, it's no use too. So, i just check , if people experimented it.
You speak agressive when you just answer to some totally despaired and lost young people. Despaired does not mean i do not listen to you, or does nothing, or me to wait for others do things for me. I ask you some advice, because i bet you know it, so what is the problem to answer nicely, even if you have repeated it 2times?
As for me, all what i know, what i did, exams i passed, symptoms, or even help about pudendal nerve or other problems i am well informed on them, i would share with no problem to everybody who would need them, even if i repeat one or 2 times the same thing.
I totally remember when you told me that cialis or viagra , in this case, were not to have erection, but to fight VS fibrosis condition, yes. But waiting for that i was also asking myself how i could try to have intercourse with gf, if the doses of viagra or cialis were working less and less.
Moreover, if i've repeated some questions, it's because, sadly, there is a bad EVOLUTION in this problem. What i wrote in august is no more available, coz things go worse and worse, DESPITE the fact i followed some of your advice, i'm under several treatments, i'm treated psychologically too, but at the moment nothing helped, and worse than that, things go worse and worse. So i re ask me some questions again, seeing the evolution.
Also , you had told me that combination of pentox, viagra/cialis , and l-arginine would help to heal fibrosis -it has worked on animals you told me-, so i was just asking if anybody had healed with this combination? It's long time , expensive and side effects treatments, so of course i try to take information about people who did it, in the same way i would answer to people who ask it to me, if it made good or bad effects on me, to share my experience...
With 'heavy' treatments, we sometimes need to be sure, and sometimes ask several times the things, moreover when it's not in your original language and when you have your head 'empty', because of a so big change in your life so sudden, it's still recent.
And i take lots of time to do my own searches too, ok, i've spent hours of discussions with doctors, on the net, on the french sites , etc, sorry if it's not so complete and precise here than in the USA ... We only discover now that pentox can work on fibrosis in france...
Then, to re-read hundreds of sites or explanations in english is a big effort for me, maybe you think it's easy coz i can write english about clearly, but it asks me great efforts and veyr high concentration (which i lose sleeping so few and being depressed) each time. So yes, i thank you to give precise answers to some questions, even if you did the work before, the goal is to share it isn't it?
I have read some of the links you had given me, and i had thanked you for that. One again, big litterature in english, moreover medical one with specific terms, is not so easy for me to understand. I do my best anyway.
Maybe you seem to be frustrated, but you would be very frustrated too if, like me, you would have lost all your money in really bad doctors who took your problem like 'dont mind, its nothing' (coz they know they can do nothing). I'm not isolated case, other french guys had the same crap 'road'. Here doctors are like this, and the truth is that they are not competent in this type of problems, exept 'take viagra, take viagra, take viagra'. (they mention it for erection, not for a 'anti fibrosis action). And then , you discover that there is really few chances for you, and the only positive things you can learn come from forum not in your own language. It's frustrating too.
What i don't like is that you just seem to think wrong things about me (or us like Ron ie) , and have bad jugdements (like 'i be you dont have any emphaty for others' (!!!) ) with no reason, i sincerly thank you for information you give to me, but it's ok if you don't want to do, ok , i dont know , you speak about 'frustration', so what could i say in my situation?
Concerning the things i've done, ok:
i saw doctors, sexologists, urologists, surgeon, acupuncturist, physiotherapist, tried medical herbs, cialis regularly, viagra sometimes, pentox, vit E, made MRI, doppler, injection, tried to continue intimate relations with gf despite this horible situation, saw psychologist, psychiatrist to help,did relaxation, spent hours on sites to get information, shared 'medical trip' with other guys in same condition, do my best to take information on forums , even not in my own language; i mentioned several times that one doctor said one thing (take cialis regularly, use VED), the other one said the oposite (it will damage more the tissues) -and both are 'famous ones', i was said (like lots of us) that my symptoms were 'in my head' (i know that at least 7 persons were told the same) when there is impotence , huge shrinkage, twisting, torsion, no more elasticity, sometimes total hardness of tunica, sometimes totaly soft as if penis skin was 'empty', change of sperm structure (probably no more fertile sperm, cool), no sensation at all, small curvature, perineal problem. I gave up my projects coz i can't do them anymore, it broke my intimate life, i have passed from totally independant to ask for social help, etc etc etc, so i have real reasons to be frustrated too,yes.
Sorry to have bothered you, thanks for your answers anyway, but it's ok i will not ask you anymore. I am, myself, answering questions on another forum, and each time there are new cases, and when a guy just starts his 'infernal trip', is scared of what happens, and asks me questions, even several times the same, i quietly answer, coz i know what he feels, and understand his fears when you enter in such a hell.
Regards
Antony
Antony,
I read 3 sentences of your post and then saw how long it was, jumped to the bottom and read 2 sentences and stopped. Most members will not even read posts that long. I often do and at times I write long posts but you need to break your posts into short comments or questions on one single topic if you expect responses.
I wish you COULD understand Tim's frustration (not aggression because he showed NO aggression) because he explained the reason for his frustration very well in his post. I am afraid if you cannot understand it you will just have to accept it since it was explained as clearly as it can be explained.
I also recommend that you not keep telling us how very bad your penis is over and over in every post. You made it very clear in almost every post and we understood it the first time. You would also get less frustration if you did not try to tell us how we would react if we had it as bad as you have it. You clearly have no idea how we would react.
Hawk,
i take note of that,it's ok. i fell it like agressive tone and there is no way to speak roughly i think. and i just told speaking about frustration, i can feel what frustration is. He tells frustration because we do not listen to him, when we do. Frustration because i speak and do nothing, but i did all what i can!
I understand what he explains, but understand me that i can't understand someone telling 'you don't listen what i say', when i do it.
I'm now looking on PAV, thanks.
I was aggressive - I am frustrated.
When I go to the effort to make a point, I do not usually want to make it again. It is one thing to post something I have written before to a newcomer. It is another to post the same thing to the very same person again and again.
Antony, I do not want to beat up on you. I want to get your attention and respect. I believe it is disrespectful to ask someone for something that they have already given to you and which is sitting in your own pocket, so to speak. It seems lazy.
It is not only seeming lazy or like you are not paying attention - it makes me feel like I am being treated like a library book getting checked out whenever you need to look something up. So I do not agree with you when you say: "I ask you some advice, because i bet you know it, so what is the problem to answer nicely, even if you have repeated it 2times? " See above.
Mostly, when I sense despair (and you show lots of despair) I am used to seeing the "paralysis of analysis". You can talk yourself to death and never do anything. It is time to make a choice of what is the best choice for you and to then do it. Leave no stone unturned to find a doctor willing to prescribe PAV, and get a VED and go to work.
I know that you do not get some of what we write because of the language barrier. You may have missed the post on the effect of "stretch" on the production of TGF Beta-1 (production goes down - giving a potential mechanism for the VED to help heal). So, OK, maybe that is out of your comfort zone for English of science.
But at some point you have to make some choices and live with uncertainty. You cannot be sure that you are going to keep your vision, I guess, if you took Viagra. Or you can say "that almost never happens, and no one ever posted about it, so maybe I should drop THAT fear and move ahead." Instead, months later, you are asking me the same questions again. So at some point my sense of "poor kid - he has it bad" starts to change to "poor kid - he is unable to move ahead for fear".
I suggest that you start to treat this like a problem to be tackled. Make a notebook and start to organize your thoughts and what people have said. Print out some of the better review articles to go back to when you are not sure about something. Get some perspective and make choices and MOVE.
Tim
Tim, Here is just a rough outline of my diet:
Breakfast: Always fruit. I keep a gallon container in the fridge stocked with chopped fruit. In it goes whatever fresh fruit might be in season, apples, pears, strawberries, you name it. It gets chopped and thrown in. Add to that some frozen fruit, mainly it add berries (black berries, raspberries, blueberries, etc.). Then I fill it all off with some canned fruit cocktail, the kind packaged in pear juice with no sugar added. And always grapefruit, some people might not be able to have this, but its healthy if you can. The more color the better! To this I add some fiber, typically either apple fiber or grapefruit fiber, and cinnamon always cinnamon. And I shake it all up and thoroughly mix it. Every morning when I serve myself about one cupful of this mix, I add some walnuts or pecans, some whey protein, some truly low glycemic cereal. This adds crunch! The best cereal I have found is made by Food For Life (http://www.foodforlife.com (http://www.foodforlife.com)). This company makes really great products. It is one of a handful of companies that you can run down the label and not find one junk food type ingredient in virtually any of their products. This morning I also began adding chia seed (http://www.chiaforhealth.com (http://www.chiaforhealth.com)). I typically eat this with a couple of slices of flourless toast (Food For Life again).
Lunch: Veggies, always veggies. I keep yet another gallon container in the fridge stocked with chopped veggies. In it goes whatever fresh veggies might be in season. I try to include a lot of cruciferous types, broccoli, cauliflower, etc. Lately I have been making sure that I also include raw cruciferous veggies as well since these have properties that cooked stuff loses. Also stuff like avocados are great to include. Sometimes I even chop up things like chard, cole, or spinich and put that in. Once again, the more color and variety the better. To this I add frozen mixed vegetables to fill up the container, either with or without lima beans. To this I add flax meal and corn fiber (http://www.ztrim.com (http://www.ztrim.com)), along with canola oil, olive oil and a bit of balsamic vinegar. Then shake, shake, shake until thoroughly mixed. I work during the day, so in the morning I just put a cupful in my little seal able container (I like Lock & Lock containers and use them for the fridge bins as well). To the mixed veggies I at this point add a handful of cashews, some whey protein, some of the same cereal I use for the fruit, and now I am also trying the chia seed with this. I also like to add a little fresh salsa to this since it is extremely healthy, but lately have been to lazy to make the salsa (basically just some chopped tomato, chopped jalepenio's or serrano's, chopped onion, chopped cilantro, and a bit of lime juice). Then I just close it up, shake it, throw it in my bag, and I'm off to catch the bus.
Supper: Supper is more varied. I will eat something like a meat sandwich, typically turkey, chicken, or tuna (And yup, Food for Life makes healthy hamburger buns! They also make healthy hot dog buns, but stay away from those because what you put in them might not be good for you). In terms of condiments, watch out for sugar and corn syrup. Or I will have soup, green salad with olive oil/balsamic vinegar topped with cereal crumbs, or some other dish that avoids refined and high glycemic carbs like the plague.
And in between meals I ALWAYS carry around one of those sealed Lock & Lock containers filled with RAW nuts. Peanuts, Walnuts, Almonds, these are all healthy if you are not allergic to them. Nuts are a great healthy snack. They fill you up without adding a lot of calories. Occasionally I will eat a slice or two of swiss or cheddar cheese. Now and then other things, but the above are my staple diet. But I try not to eat ANYTHING after 8pm and to get to bed in time to get at least seven hours sleep. Recent studies indicate that as you cut sleep time below seven hours, you increasingly put yourself at risk for cardiovascular disease, and as you increase it over eight hours, you put yourself at increasing risk for cancer. So seven to eight hours seems ideal. Too bad that the world we live in and the requirements it puts on us are far from ideal, but we just have to do the best we can. Recent research seems to show that those who try to implement these diet and exercise steps in their lives, even though they can't really get it right due to the constraints of life still have far better health outcomes than those who simply refuse to even try. For example they are finding out that actually ten minutes plus ten minutes later on plus another ten minutes later is pretty much equal in benefit to a continuous 30 minute exercise routine. Same with food. Sure there are those times when we just can't refuse that choice piece of junk food being offered by someone of special significance. So enjoy it! Just don't pig out on it and don't keep 'em in your fridge and KNOW that when you do eat it it has a cost, so eat that stuff in careful moderation. It doesn't have to be religious, just common sense stuff. Anyway, this is what works for me. - George
Thank yo so much for that! I am printing it out and going to start to make some of your recommended changes tomorrow morning.
Was that organic chocolate bar I just ate gonna have to go away? ;)
Tim
Quote from: j on December 12, 2007, 09:02:45 PMI'm thin and in pretty good shape; but I have to admit, I've always been the King of Carbohydrates. I don't eat sugary treats but do consume a lot of bread, baked goods, trail mix and so on. As you all know it's really hard to avoid sugars unless you stay completely away from processed/packaged foods.
j, a couple of comments. First of all, the problem is not carbs, but rather the type of carbs. Our bodies NEED carbs and the nutrients that high quality carb foods contain. But most bread and baked goods are loaded with the wrong kinds of carbs and often the wrong kinds of fats. Trail mix is ho hum. It usually contains nuts (good), and dried fruit (good), but the dried fruit is often soaked in corn syrup (bad) and sometimes candy is included (bad). Secondly, the more you avoid processed/packaged foods, the better. They are indeed the root of the problem because they are usually loaded with mass market universally unhealthy ingredients and tend to be calorie dense rather than nutrient dense. That is why nutritional experts STRONGLY advise shopping the "outside aisles". The sad fact is that most of the healthy ingredients in processed foods have been stripped out and thats what ends up getting sold as 'vitamins' and 'supplements'. Lastly, being thin does not necessarily indicate a good diet. It just means that you have 'good' genes in this regard. Unhealthy diets result in all kinds of maladies. Which one(s) you end up with are determined by your genetic vulnerabilities. Just because someone is consuming to much high glycemic carbs does not mean they will necessarily end up fat, or diabetic. But they may end up with Peyronies, hypertension, arteriosclerosis, or any of a number of other mysterious and unfortunate diseases that spring forth from that lifestyle. Its not about being fat, its about a process, a process that begins with eating too much high glycemic, calorie dense food and ends with something giving up somewhere from all of that excessive glucose and insulin being shuttled around your body. And since glucose and insulin are very dynamic, it doesn't even require that you be diabetic. Fasting glucose measurements do not give a clue as to where your glucose and insulin levels are going when you have just eaten that piece of cake or pie or even that sandwich made with mass market bread loaded with refined flour and flavor enhancers like corn syrup. And those spiking glucose and insulin levels are tearing up your body and its the weakest genetic link that fails first. - George
Quote from: antony on December 12, 2007, 10:33:15 PMTo Georges: but what do you think about fibrosis due to bad scar after a trauma? do you think its linked to glucose or food too?
Antony, A scar IS a type of fibrosis. You ask if I think trauma induced scaring/fibrosis is due to food? Yes, I think it is linked to one's diet. Of course it is also linked to ones genetic make up. Some people just have good genes in this regard. They have lousy diets and they will NEVER have problems with fibrosis no matter what kinds of injury they sustain. But when bad diet and bad genes cross, watch out! And guess what? You CAN'T change your genes, but you sure can change your diet.
By the way, I think that everyone here CARES about you and is trying to help you. You are getting a huge amount of great advice. But only you can act on that advice and reap the benefits. But you have to stop focusing on YOURSELF and on YOUR problems and start being thankful for what you have and for so many people right here who care about you and are trying their best to help you. - George
Research has shown that rats on calorie restricted diets have very few health problems and tend to live far longer than rats on conventional diets. What does this tell you? Almost all the health problems that rats ordinarily have are do to excessive calorie intake. And all the evidence indicates that in the case of humans, its no different. The answer of the experts, of course, is that the healthy rat diet is simply impractical for humans. I'm not sure about that. I rather believe that if one gets rid of the known bad stuff, the rest will tend to take care of itself and we will find ourselves consuming far fewer calories, and the less, the better. But too many popular diet plans try to cut calories without boosting nutrients. That is a prescription for disaster and the reason that many dieters suffer from maladies associated with malnutrition. The point is NOT to starve ourselves and if you are hungry all the time, that is a danger sign. The point is to get rid of the empty calories which ONLY serve to put us at risk of disease. Nutrient dense calories, on the other hand, are essential for good health. - George
George,
I am not sure I have the time to engage in this conversation but first, I wonder if this should not all be moved to "A New Theory" topic.
I have been on a somewhat self-made diet on low glycemic index food, very minimal transfats, high omega 3 fats and minimal saturated fats. I offer an opinion or two on your diet and a suggestion or two on other items.
First, as you no doubt know, MANY fruits have a high glycemic index, bananas, and raisins are just two. Syrp like that in many canned fruits and fruit cocktail is as bad as anything we can consume from the point of glycemic index. When we do include a higher glycemic index food, it can be buffered (its effects diluted) by consuming some protein & good fat just prior or with the higher glycemic index food.
My diet offered with no professional insight is like follows.
Breakfast: Old Fashioned Quaker Oats with 2 tablespoons of ground flax seed, and 10 grams of whey protein added. I throw in about a 1/2 cup of blue berries and half of a banana and use good tasting vanilla soy milk. The soy milk is my preference. It is actually worse on the glycemic index scale but lower in fat and better for prostate cancer issues. The flax seed and the whey help buffer the sugar present in the banana and soymilk by upping the protein and good omega3 fats.
Other meals amd snaks always include a mix of fat, protein and good carbs. Nuts are good (easy to over do), omega 3 hard boiled eggs, wild Alaska salmon, frozen vegetables, (califlour/broccoli) easy on carrots, corn, and potatoes. Lots of greens like Kale, etc. (iceburg lettuce does not count, it is poor in nutrients). I eat lots of fish and chicken very little red meat (once a month)
GREAT Snack/treat - Requires a powerful hand blender to help reduce clean-up.
1 cup of triple-berry (frozen rasberry, black berry, blue berry mix)
1/2 banana
one small organic red delicious apple with only the seeds removed
a 1" cube of extra firm tofu
24 grams of whey protein
one small orange or tangerine
enough soy milk to make a thick or thin shake to your liking.
Ground flax or yogurt is optional. This is as good as ice cream (and I love ice cream)
Chop apple, orange and banana into thumb sized chunks. Chop the tofu smaller and blend all this in a LARGE diameter glass. This will almost replace a meal if you want it to. It is great after workouts and good before a meal to help you avoid stuffing bad foods. It is also great to cool off in the summer.
TIPS: It is easy to eat right even in a rush once you learn how. In a pinch, there are decent easy items like SpaCusine frozen diners by (LeanCusine). These are usually no transfat which means not only none on the nutritional chart (a loose standard) but also no partially hydrogenated fats in the ingredients list (a strict standard). They have Alaska salmon dinners, also many others There are the "Birdseye Steamfresh" veggies you can steam right in the bag in 60 seconds. Great to add to the frozen dinner or with any home cooked meal.
A big pot of vegetarian chili packed with veggies, can be frozen and fixed in minutes. Keep Packs of tuna, low sugar (read label) whole wheat bread, boiled (omega 3 eggs) available for hunger moments.
I think most of us could restrict calories resulting in a benefit to us. I am leery however of the restricted calorie diets that result in longevity of worms, small animals and other species. A lot of serious minded nutritional experts feel they do not have the same application to humans.
I think this is a very different topic than that of low glycemic index foods and insulin resistance.
Tim : i understand what you say .
The fact was when you tell me 'you don't listen or re ask the same', no, i do listenn, as i told you, i am already taking pentox, vit E, and i just replaced viagra by cialis. I had not asked about fear concerning vision before, so i just wanted to check, it's normal that it's scary, but your're right i should put this idea away from my head, but you can understand that i ask me some interrogations, it's not a small thing that taking daily viagra during 1 year ... The only thing i haven't taken yet is l-arginine, and it's not because i don't listen to you but doctor had told me it was useless, but i will try it. I had also bought a VED ,one doctor adviced, a cheaper one (i have few money) in a sex shop , and sadly i lost my money coz it does not work at all (i bet there is not enough pressure in it).
So i do understand all what you say, but don't say i'm not listening, but because i have some fears and there is EVOLUTION (in the bad way) in my problem, i had to re-ask (to check) one question, that i thanked you to answer.
I don't consider you like a library book (??!!) but sometimes check general information coz i supose you have already passed by this trials and it's efectively easier for me you give me a clear response (if of course you know it), than checking it in hundreds pages of information in english (in the contrary, if you were on french forum, you would feel the same). It's as simple as that in my mind, sorry if after there are misunderstandings acording to language.
And i admit there is often dispair in what i say...i understand what you mean in 'paralysis of analysis' but i do the work however. And i just bet you can understand this despair -even if you do believe that its not a good choice to stay in it, that i agree of course (but its stronger than me).
And i've always thanked you for each precision, i do apreciate this help, of course less being agressive.
Antony
Georges, i understand that combination of genes (that we can't change yes) and bad diet can lead to scar/fibrosis , but once it is done and it has already bad scared, after a trauma, do you think diet is able to help to dissolve the scar done? I was seeing an acupuncturist who dealt also with herbs and food, he was telling me that good diet was something to know at the younger age when you are child, and it was very important in 'preventive' of illness, for avoiding it to appear. But once done, that it would not permit you to heal.
Quote from: Hawk on December 14, 2007, 12:54:24 PMI am not sure I have the time to engage in this conversation but first, I wonder if this should not all be moved to "A New Theory" topic.
Hawk, I totally agree that this is off topic for this thread. However, I think it is much more relevant to Peyronies than many of you would like to admit. I also think it is off topic for the "New Theory" thread because there is just so much scientific data to back up the relevance of diet that to label it as "New Theory" borders on the ridiculous. For example, it is a known fact that Peyronies cross-linking is based on the glucose-protein interaction that causes the very same problems suffered at a high level by people with diabetes. The link is there and it is only being reinforced by new studies left and right on a daily bases that demonstrate the huge impact that diet has on health and the what are now obvious links between diet, fibrosis, cancer and all the rest. So move it all if you like or you can be proactive and start a new link on the whole glucose/protein link and AGE topics.
Quote from: Hawk on December 14, 2007, 12:54:24 PMFirst, as you no doubt know, MANY fruits have a high glycemic index, bananas, and raisins are just two.
I am not sure about "many", I would consider bananas one of a few exceptions and not extremely high either. At 51 on a scale of 0-100, that sounds more like moderate. They are often referred to as "high" since they are on the high end for fruit. Pineapple is another example at 66. As for raisins, they are only dried grapes and grapes are not high glycemic food. They are a little higher at 64, but the real problem with dried raisins and MOST other dried fruit is that they usually soak them with corn syrup as part of the processing. READ THE LABELS! I steer completely clear of dried fruit for this very reason. Most of the bad stuff comes in supposedly healthy, even organic type stuff that is really just more unhealthy processed food that is marketed with a stealth "healthy food" sales pitch. But if you mix your fruit up you will come up with a good balance and a real decent overall GI number.
Quote from: Hawk on December 14, 2007, 12:54:24 PMSyrp like that in many canned fruits and fruit cocktail is as bad as anything we can consume from the point of glycemic index.
Canned food IS processed food by definition and therefore reading the label is absolutely mandatory. The ONLY canned fruit I will touch is the stuff packed in fruit juice (usually pear juice). I even avoid canned fruit with artificial sweetener, since that can increase hunger (unlike pear juice) AND research is showing that diet soft drinks promote diabetes just like conventional ones.
Quote from: Hawk on December 14, 2007, 12:54:24 PMWhen we do include a higher glycemic index food, it can be buffered (its effects diluted) by consuming some protein & good fat just prior or with the higher glycemic index food.
So why not try to stay with lower GI food and buffer that? The whole idea is to get glucose and insulin down as low as possible.
Quote from: Hawk on December 14, 2007, 12:54:24 PMBreakfast: Old Fashioned Quaker Oats with 2 tablespoons of ground flax seed, and 10 grams of whey protein added. I throw in about a 1/2 cup of blue berries and half of a banana and use good tasting vanilla soy milk. The soy milk is my preference. It is actually worse on the glycemic index scale but lower in fat and better for prostate cancer issues. The flax seed and the whey help buffer the sugar present in the banana and soymilk by upping the protein and good omega3 fats.
Sounds reasonable to me.
Quote from: Hawk on December 14, 2007, 12:54:24 PMOther meals amd snaks always include a mix of fat, protein and good carbs. Nuts are good (easy to over do), omega 3 hard boiled eggs, wild Alaska salmon, frozen vegetables, (califlour/broccoli) easy on carrots, corn, and potatoes. Lots of greens like Kale, etc. (iceburg lettuce does not count, it is poor in nutrients). I eat lots of fish and chicken very little red meat (once a month)
I would disagree on nuts. I find it VERY hard to over do on nuts. The reason is that I simply don't buy processed nuts. It is the nuts that are salted and/or roasted that I can't get enough of, but they are unhealthy anyway so why have them around. I always carry around raw peanuts or almonds. No problem with over consuming those, my gut tells me when I've had enough and that doesn't take long. But a lot of nuts on the market are even laced with corn syrup (its everywhere). You eat those till your gut bursts and not be satisfied. Nuts are hugely maligned by nutritionists for just this reason but some really top nutritional experts are really advising nuts right now, RAW NUTS. As for potatoes, I avoid them entirely except for an occasional treat. Although they are not terribly high on the glycemic index, they are loaded with starch which presents other problems. Starches are actually as bad as sugars and transfats and in some ways worse than sugars. They should be consumed very sparingly. Sweet potatoes and yams are much healthier.
Quote from: Hawk on December 14, 2007, 12:54:24 PMGREAT Snack/treat - Requires a powerful hand blender to help reduce clean-up.
1 cup of triple-berry (frozen rasberry, black berry, blue berry mix)
1/2 banana
one small organic red delicious apple with only the seeds removed
a 1" cube of extra firm tofu
24 grams of whey protein
one small orange or tangerine
enough soy milk to make a thick or thin shake to your liking.
Ground flax or yogurt is optional. This is as good as ice cream (and I love ice cream)
I like ice cream and frozen yogurt as much as anyone, but frozen yogurt is far worse for the health than ice cream in spite of its healthy reputation. That is simply because yogurt is incredibly sour and in order to make it palatable, it is loaded down with sweetener. VERY BAD. We have had people comment to us that their diabetes is out of control and they can't figure out what the problem is. It doesn't take very long to find the problem. Their doctor has told them that all manner of yogurt is fine for them to consume. So they are sucking in the sugar without even being aware of it. Lots of people have no clue as to how much sweetener goes into yogurt products. And all forms of sweeteners are bad. I love it, but I avoid it as much as possible except for an occasional treat and then I make sure I am aware of the cost.
- George
Quote from: Hawk on December 14, 2007, 01:21:05 PM
I think most of us could restrict calories resulting in a benefit to us. I am leery however of the restricted calorie diets that result in longevity of worms, small animals and other species. A lot of serious minded nutritional experts feel they do not have the same application to humans.
I think this is a very different topic than that of low glycemic index foods and insulin resistance.
Hawk, the whole effort to lower consumption of high glycemic foods is a strategy to lower calorie intake. The problem is NOT just the carb content or carb quantity, but it is also the overall caloric intake. They are all linked together because if you could cut your carb intake to zero, you could still have a blood glucose problem because our bodies are very good at converting foods from one type to another. Fat to glucose, protein to glucose, etc. That is precisely why people abstain from fats and can't understand why their cholesterol levels are so high. The docs answer is that its "your genes". They say that its your body that is "creating" the fat. Well thats all very convenient for the drug companies. The answer of course is an expensive pill every day. In reality the problem is that these people are consuming too many calories, sugar, starch, protein, whatever, and their liver is merrily converting all of that to fat. So in spite of their rigid diet, their cholesterol remains out of control. The same with diabetes. You can restrict sugar all you like, but if your calories are out of control you will get nowhere. The doc will likely just chalk it up to bad genes and stuff you with insulin till your kidneys give up. If you carefully study the whole process of AGE creation, you discover that this whole dietary nest is interlinked and the root key IS calorie restriction. And a major key to ACHIEVING calorie restriction is avoiding high glycemic foods. But this is still not the whole story. When you sufficiently restrict calories, you activate the SIRT1 gene releasing sirtuins that have the effect of protecting the bodies cells. This whole area is huge and offers huge benefits to people with Peyronies. - George
You guys might want to check out pomegranates, seems to be a very powerful fruit in terms of anti-oxidation and so on http://en.wikipedia.org/wiki/Pomegranate
kind of time-consuming to prepare though. a plus is, that it tastes really good, especially the juice! (if you like sour, that is)
Quote from: antony on December 14, 2007, 01:58:48 PM
Georges, i understand that combination of genes (that we can't change yes) and bad diet can lead to scar/fibrosis , but once it is done and it has already bad scared, after a trauma, do you think diet is able to help to dissolve the scar done? I was seeing an acupuncturist who dealt also with herbs and food, he was telling me that good diet was something to know at the younger age when you are child, and it was very important in 'preventive' of illness, for avoiding it to appear. But once done, that it would not permit you to heal.
The problem is that the problem is ongoing. And the question is: Do you want it to potentially get worse from here? Good diet may not fix the problem, but I may very well prevent more damage. And if you can stop the continuing damage, there is then greater possibility that you can use Pentox or whatever to repair the existing damage. But you are not going to be able to fix the damage already done if you don't stop the process from continuing. - George
Georges, yes i see what you mean. But in order to stop continuing damage (for pentox or others have greater chances to heal then), so do you think it's better to stop intercourse too? I have no response from doctors too, they tell me contrary advice on it (one says to continue, the other to stop). I feel as if i continue intercourse (even in very crap condition and with cialis, can't do without medicine), i damage more the tissues, coz penis is weak, and so i will never stop the process continuing, so maybe after medicine like pentox can't be used to heal. But if i do not practice sex at all, then the penis is ALWAYS dead and NEVER moves, so it's not good too, coz everybody, with not activity at all, will have some fibrosis after a moment. So i don't really know how to act, and it's not the doctors who know it...
Quote from: antony on December 14, 2007, 02:37:26 PM
Georges, yes i see what you mean. But in order to stop continuing damage (for pentox or others have greater chances to heal then), so do you think it's better to stop intercourse too? I have no response from doctors too, they tell me contrary advice on it (one says to continue, the other to stop). I feel as if i continue intercourse (even in very crap condition and with cialis, can't do without medicine), i damage more the tissues, coz penis is weak, and so i will never stop the process continuing, so maybe after medicine like pentox can't be used to heal. But if i do not practice sex at all, then the penis is ALWAYS dead and NEVER moves, so it's not good too, coz everybody, with not activity at all, will have some fibrosis after a moment. So i don't really know how to act, and it's not the doctors who know it...
Antony, I think the point is not whether to participate in sex or not to participate in sex. The point is to be prudent and do it in a way that does NOT cause further damage. Just try to be cautious. In this sense masturbation is probably safer because you are in complete control while having sexual relations with another person puts you at risk that no matter how careful you are, they may not be careful since it is your problem, not theirs. Additionally, even in a sexual setting, one of the warning signs can be pain, and it is probably easier to respond appropriately to pain in a masturbation setting than in an intercourse setting. And in terms of penis health, masturbation can provide just as much beneficial stimulation as intercourse without the associated risk. Sorry to be so blunt here, but I am just trying to express this as clearly as possible. I would also hasten to add that a VED might be an even better solution since it offers far more benefits than either intercourse or masturbation in terms of penis health and it is very likely to relieve your symptoms to a large degree. - George
Ok thanks George, i see what you mean. In other words it would be better to stop all intercourse, exept very very careful ones (that is not really possible to ask to the girl)....
I was feeling the same, even if living without that is a ****, and will definitely break my couple, but if i have no choice...
I would add that when i tried with cialis, i had no pain during intercourse (but no sensation), but real pain the days following...
Anyway, i will see for buying a VED soon. Antony
Hi End_t,
I just wanted to say that you could try Acytel-l-carnitine. It is a supplement that seems to help with the pain. I take 1 x 500 mg of this supplement twice a day before a meal and it has eliminated 98% of the pain.
Good luck and let us know how things go
Pal
Wow = I like it when I learn new things.
Several comments. Thanks to Antony for your comments - it helps to hear. Please learn that you will do better when yo listen and act. There is a limited value to misery - it IS a choice.
George and Hawk, thanks for your thoughtful comments on diet. I am making gradual changes i intake, but it is clear that I still let too much concentrated starches and fats into my diet.
The VED allowed me to take care of my daily needs for an erection without going crazy. I was torturing myself emotionally by trying to have sex (with myself or with others) and the VED allowed me to finally get my penis filled with blood and stretched out on a daily basis without it being linked to the complicated fact of impaired sexuality for me. That is, trying to have intercourse whe nI felt sad or miserable about my Peyronie's Disease was hurtful to me. Looking at porn to get hard when I was alone was hurtful to me. Now I have a healthy way to take care of that need without it driving me crazy.
And very careful sex can be extremely erotic with the right partner.
Tim
Quote from: George999 on December 14, 2007, 02:19:35 PM
Hawk, the whole effort to lower consumption of high glycemic foods is a strategy to lower calorie intake. The problem is NOT just the carb content or carb quantity, but it is also the overall caloric intake.
George, I have a significantly different understanding. The effort to lower consumption of high glycemic foods is to prevent glucose/insulin SPIKES. It is of course true that we can overdo anything which was my point that calorie dense unprocessed nuts can be overdone. Even olive oil is fat, and fat is calorie dense. Andrew Weil M.D.warns about this is several of his books (not my favorite author). The problem is not glucose alone since glucose is the ONLY thing our muscles can burn. Our legs, heart, and brain need glucose to live and work. The problem is the rapid release of glucose that in turn spikes insulin. This rapid release comes from foods with relatively high glycemic characteristics not from the slow steady conversion of fat to glucose. The biochemical/ physiological results of glycemic foods are complicated but include many things such as; locking out fat conversion to glucose, insulin resistance (making weight loss more difficult).
QuoteThey are all linked together because if you could cut your carb intake to zero, you could still have a blood glucose problem because our bodies are very good at converting foods from one type to another.
I do not think a person is LIKELY to have a high glucose problem if they could cut to zero carbs or very restricted carbs) as you suggest. Their levels would be very steady and maybe low in the beginning until the body regulated itself. Everything I read indicates the problem is the qlucose rush that is followed by the insulin spike. These are is the result of refined carbs and other high glycemic index foods, especially when they are dumped in a digestive system containing no fats and protein to slow absorption.
Nicholas Perricone M.D. is one author/lecturer that discusses his process in detail, along with the collagen problems that result. He also recommends diets to prevent this process.
PS: for claity to other readers. I was not advocating ice cream. I was stating that even as an ice cream lover, I am pretty satisfied by the very healthy fruit smoothy in my previous post. :D
Hawk, You are actually half way there with your understanding on this. Consuming high glycemic foods does indeed create glucose/insulin spikes in the bloodstream and this is indeed bad in its own way. But it is precisely these spikes that stimulate cellular insulin resistance which in turn raises basal insulin levels which in turn causes us to gain weight which in turn causes us to experience more hunger which in turn causes us to consume more overall calories which in turn causes us to enter a continuous weight gain cycle/syndrome which in turn fuels all of these health problems including Peyronies. Having said that, I would add that some people, due to their genetic makeup, tend to skip some of those steps. Some might not have a lot of obvious weight gain, for example, or even pronounced rise in their insulin levels, but they still end up consuming ever more total calories and the result is health issues. That is why some very thin and athletic people, who are "able to eat everything", end up having cholesterol problems AND cardiac issues.
I also disagree with you on the idea that cutting carbs to zero would eliminate the glucose problem. I would suggest that an insulin dependent type II diabetes sufferer could have high glucose levels even without consuming carbs in the absence of their insulin injections, since the body could easily produce glucose faster than it could eliminate it. But I admit that that is all a theoretical abstraction and of no great use to our discussion other than to point out that ALL serum glucose comes from our diet and not from "our genes" as the drug company PR likes to suggest. The whole "genetic" argument is just one big excuse for people not to address issues with their diets. Everybody just wants a pill or a shot so that they will not have to accept responsibility for their lifestyles in terms of diet and exercise and I suspect that that is all about to come crashing down with the health care crisis and the reality that social security and medicare are quickly running out of money with no real relief in sight. And I am not intending this to be pessimistic, but I do think that in the absence of people being willing to take charge of their own health, we will see some not so good things coming in the near future.
I say all of this as one of those same people, who finally got tired of the dependence on drugs and, through diet, have been able to eliminate two major problems from my life. First of all, long standing hypertension, and second, a problem with a bladder that, two years ago had lost enough of its elasticity that I was not able to empty my urine and was constantly fighting urinary tract infections and now it, after a recent ultrasound test, it is looking completely normal. Thats what can happen when you decide you don't want to live the rest of your life with a catheter and take positive action to do something about it. And a huge part of that positive action was diet. - George
Quote from: George999 on December 14, 2007, 02:01:33 PM
As for raisins, they are only dried grapes and grapes are not high glycemic food. They are a little higher at 64, but the real problem with dried raisins and MOST other dried fruit is that they usually soak them with corn syrup as part of the processing.
George, I actually put few foods in my mouth without reading the label in detail. We buy 2 major brands of raisins and neither of them are sweetened with corn syrup. Both common grocery store brands have only one ingredient ->
Raisins. In fact I do not recall ever seeing any actual packaged raisins that were sweetened. Raisins themselves are often used to sweeten other foods. They are naturally sweeter than grapes because they are dehydrated and thus the sucrose is concentrated. This raises the topic of one reason fruit juices are not usually a wise choice. I would also argue that a glycemic index food of 64 is pretty high to be throwing in on an empty stomach. Combining it with some good fat and protein is likely to be healthier even though it may be an increase in calories.
George, we clearly draw some different conclusion from our study. These are far from simple clear cut issues. Many argue that cholesterol of any kind is not the culprit by itself. My mother had cholesterol of of 320 - 340 (HDL/LDL ratio were not good). It was known to be at that level for almost 2 decades. She had an angiogram when she was near 80 and the cardiologist told her she literally had the arteries of a 16 year old girl with no beginning signs of arterial or heart disease. He explained that it is not really rare that he finds similar cases where high cholesterol does not translate into an enemy. This cardiologist mentioned that he had a heart attack at 48 years old with very good cholesterol readings. Many suggest that poor arterial health from lack of nutrients like vitamin c is the real factor. Clearly genetics do play a huge role.
PS: it is getting time to move these posts because they are far off the topic of whatever topic this is supposed to be. :D
Hawk,,I know this is off topic, but just to back you up on this cholesterol issue...High numbers run in my family. My grandmother had a number well over 400 for many years, didn't watch what she ate and died at 96 yrs of age with alzhiemers,,,i used to watch her eat a lot of sweets....My mother's numbers have always been arond 350 and she's 84, she has been able to get her's lowered...Where as for me, i have always watched my diet very close and my numbers would run around 275,,,low sugar, low to no fat in my diet....I just had my cholesterol checked yesterday and i finally got it down to 239 and i really watch what i eat closely,,so it has paid off for me....My doc said i was fine and not to worry, just keep doing what i have been....
I do read labels a lot,,but thats because of my wifes diabetes too,,,but it's good for both of us...
kimo
Would natural anti-inflammatory supplements such as Turmeric (Circumin),fish oil,etc. be as effective as Pentox the drug,cheaper, and safer? I just recently read that India has one of the lowest rates of Alzheimer's possibly because of their substantial use of curry (Turmeric/Circumin)which is a potent natural anti-inflammatory. It is also in yellow mustard I believe. Capsules are available with standardized extracts. Maybe using Turmeric, fish oil, and L-Arginine together would be a good combo? The recent article by Dr. Julian Whitaker (Health & Healing newsletter) on Alzheimer's prevention also said that Vitamin C and E significantly reduced the risk of Alzheimer's which they believe is mainly caused by inflammation and free radical oxidation.
Quote from: stogie_53 on December 19, 2007, 09:47:14 PM
Would natural anti-inflammatory supplements such as Turmeric (Circumin),fish oil,etc. be as effective as Pentox the drug,cheaper, and safer?
Stogie,, Good question. These items may well be of benefit for Peyronies Disease patients for their anti-inflammatory properties but the benefit of pentox is not as an anti-inflammatory but because of two other actions.
1. It increases circulation by actually changing the the shape and character of red blood cells allowing them to "squeeze into capillaries they may not have been able to enter before.
2. Pentox mediates (reduces) Transforming Growth Factor B1 (TGF-B1) which seems to be a major component of Peyronies Disease progression.
ginkgo is probably the closest natural product for trying to accomplish some of the pentox action but there is far too little information available to conclude just how useful pentox is much less whether ginkgo is of benefit.
PS: Pentox is relatively inexpensive.
Don't forget that Pentox actually has a other capabilities that range even beyond those added by hawk. It is not just a matter of stopping inflammation, although that is most certainly helpful and there are a number of supplements that promote just that, including Circumin/Turmeric. The root issue with Peyronies is the AGEing process. This is, in fact, the source of the inflammation. AGE components ARE irritants and they cause inflammation. They are, in turn, produced by glycation wherein stray glucose aberrantly binds itself to protein such as collagen. Here is an example of a reference that notes Pentox's ability to block the process of glycation:
Quote from: PubMed1: Clin Chim Acta. 2000 Nov;301(1-2):65-77.Click here to read Links
Evidence that pioglitazone, metformin and pentoxifylline are inhibitors of glycation.
Rahbar S, Natarajan R, Yerneni K, Scott S, Gonzales N, Nadler JL.
Department of Diabetes, Endocrinology and Metabolism, The Leslie and Susan Gonda (Goldschmied) Diabetes and Genetic Research Building, City of Hope National Medical Center, Duarte, CA 91010, USA. srahbar@coh.org
Enhanced formation and accumulation of advanced glycation end products (AGEs) have been proposed to play a major role in the pathogenesis of diabetic complications, and atherosclerosis, leading to the development of a range of diabetic complications including nephropathy, retinopathy and neuropathy. Several potential drug candidates as AGE inhibitors have been reported recently. Aminoguanidine is the first drug extensively studied. However, there are no currently available medications known to block AGE formation. We have previously reported a number of novel and structurally diverse compounds as potent inhibitors of glycation and AGE formation. We have now studied several of the existing drugs, which are in therapeutic practice for lowering blood sugar or the treatment of peripheral vascular disease in diabetic patients, for possible inhibitory effects on glycation. We show that that three compounds; pioglitazone, metformin and pentoxifylline are also inhibitors of glycation.
PMID: 11020463 [PubMed - indexed for MEDLINE]
There has been a lot of discussion here regarding TGF-beta-1. In the case of Peyronies, we know it is beneficial to inhibit it. But the real challenge is to move upstream. TGF-beta-1 appears to be a product of the AGEing process:
Quote from: PubMed1: Am J Pathol. 2004 Dec;165(6):2033-43.Click here to read Click here to read Links
Advanced glycation end-products induce connective tissue growth factor-mediated renal fibrosis predominantly through transforming growth factor beta-independent pathway.
Zhou G, Li C, Cai L.
Department of Pathology, Jilin University, Changchun, People's Republic of China.
Advanced glycation end-products (AGEs) play a critical role in diabetic nephropathy by stimulating extracellular matrix (ECM) synthesis. Connective tissue growth factor (CTGF) is a potent inducer of ECM synthesis and increases in the diabetic kidneys. To determine the critical role of CTGF in AGE-induced ECM accumulation leading to diabetic nephropathy, rats were given AGEs by intravenous injection for 6 weeks. AGE treatment induced a significant renal ECM accumulation, as shown by increases in periodic acid-Schiff-positive materials, fibronectin, and type IV collagen (Col IV) accumulation in glomeruli, and a mild renal dysfunction, as shown by increases in urinary volume and protein content. AGE treatment also caused significant increases in renal CTGF and transforming growth factor (TGF)-beta 1 mRNA and protein expression. Direct exposure of rat mesangial cells to AGEs in vitro significantly induced increases in fibronectin and Col IV production, which could be completely prevented by pretreatment with anti-CTGF antibody. AGE treatment also significantly increased both TGF-beta 1 and CTGF mRNA expression; however, inhibition of TGF-beta 1 mRNA expression by shRNA or neutralization of TGF-beta 1 protein by anti-TGF-beta 1 antibody did not significantly prevent AGE-increased expression of CTGF mRNA and protein. These results suggest that AGE-induced CTGF expression, predominantly through a TGF-beta 1-independent pathway, plays a critical role in renal ECM accumulation leading to diabetic nephropathy.
PMID: 15579446 [PubMed - indexed for MEDLINE]
Therefore it would seem to make sense to target the underlying AGEing process (with things like Pentoxifylline) and try to break existing AGEs (there are also substances known to do that) rather than wasting too much time focusing on downstream effects like TGF-beta-1 and inflammation. We need to take in a larger section of the puzzle here or we are going to likely end up just tilting at windmills with marginal results. If anyone here can point out where this logic is flawed, please speak up. - George
There is much I do not know about this topic, so I am glad you are teaching me. As diabetes is exploding in prevalence and incidence in this country (30-50 percent of all children born in the year 200 will develop diabetes!!!)(yes - think about that!), we would expect that Peyronie's Disease will also explode in numbers.
Clearly, Peyronies is also a disease related to aging (much more common in the 6th decade and beyond), and this suggests that apoptosis (programmed cell death) may also be going awry in this disease. Also, I noted that inhibition of TGF did not stop the AGE-related processes from happening, suggesting that other mechanisms underlie the fibrosis of that condition. Since we have scant evidence that blocking TGF will make Peyronies better (remember that we have SOME data - a few case reports, and some animal data), then it seems possible that AGE is unrelated to Peyronies and that only unless the AGE products are the only reason for the increased TGF activity, then blcking AGE products will not help.
But, I doubt if decreasing AGE products would hurt!
Tim
Here are some references which link Peyronies to AGE:
Quote from: Peyronie's Disease: A Guide to Clinical Management by Laurence A. LevineIn conditions such as aging and diabetes, excessive amounts of advanced glycation end products (AGEs) are formed and react with proteins, particularly collagen, and in diabetes their formation is greatly enhanced with rising hyperglycemia (16, 78, 79). This leads to tighter collagen fibers because of age crosslinks that render collagen much more resistant to proteolysis by MMPs, and clinically this presents as tissue fibrosis and rigidity.
Here, Dr. Levine makes the connection between AGEs and Peyronies. Note that AGEs occur in both Diabetics AND non-Diabetics, but the greater the serum glucose levels, the greater the rate of AGE creation.
This connection is also noted in "Peyronie's Disease: Advances in Basic Science and Pathophysiology" by Trinity J. Bivalacqua, BS, Sunil K. Purohit, MD, and Wayne J. G. Hellstrom, MD, FACS.
Another interesting study by the above authors discusses AGEs and NO:
Quote from: Endothelial Dysfunction in Erectile Dysfunction: Role of the Endothelium in Erectile Physiology and Disease by
TRINITY J. BIVALACQUA, MUSTAFA F. USTA, HUNTER C. CHAMPION, PHILIP J. KADOWITZ AND WAYNE J. G. HELLSTROMHyperglycemia is the defining characteristic of type 1 and 2 diabetes. Glucose is known to bind nonenzymatically to free amino acids on proteins or lipids. Through a series of oxidative and nonoxidative reactions, advanced glycation end products (AGEs) are formed irreversibly and accumulate in tissues over time, in particular endothelial and vascular smooth muscle cells (Singh et al, 2001). Although AGE formation occurs during the natural aging process, it is markedly increased in diabetes as a consequence of an increase in glucose (Jiaan et al, 1995). A common consequence of AGE formation is the pathologic cross-linking of collagen, which leads to vascular thickening with loss of elasticity, endothelial dysfunction, and ultimately atherosclerosis of the vascular tree.
AGEs are known to quench NO in vitro, and AGE formation is associated with accelerated superoxide anion formation (Vlassara, 2001). AGEs accumulate in endothelial and smooth muscle cells and cause sustained cellular activation of various proteins and generation of oxygen-derived free radicals. AGEs have been shown to affect eNOS by intracellular glycation of the enzyme at base pairs 599 to 602 and alteration of eNOS activity (Seftel et al, 1997). AGEs are increased in human diabetic cavernosal tissue when compared with controls, suggesting that AGE formation may be involved in the pathogenesis of diabetic endothelial and ED (Seftel et al, 1997). In animal models of diabetes, aminoguanidine (an inhibitor of AGEs) can improve in vitro endothelium-dependent cavernosal smooth muscle relaxation and in vivo erectile responses to cavernosal nerve stimulation by direct inhibition of AGE formation, down-regulation of its receptor galectin-3, and decreased collagen glycation in the STZ-diabetic penile vasculature (Cartledge et al, 2001a; Usta et al, in press). Moreover, aminoguanidine prevented the time-dependent progression of impaired erectile responses in STZ rats with diabetes (Usta et al, unpublished data). The effects of aminoguanidine on erectile physiology are difficult to interpret because this pharmacological compound is also an inhibitor of iNOS. Additionally, aminoguanidine may prevent diabetes-induced changes in the connective tissue composition of the microvascular wall of the arterioles supplying the penis, thus improving arterial inflow to the penis. Taken together, the deleterious of AGEs seem to be involved in the pathogenesis of endothelial dysfunction as it relates to diabetes.
There are also studies which demonstrate that AGEs occur and become more pronounced in non-diabetics as they grow older, thus, once again demonstrating that AGEs, while accelerated by diabetes, are not limited to being a problem only for diabetics. It is known that Peyronies as occurs in diabetics is a direct result of AGEs. I think it highly unlikely that Peyronies in non-diabetics is a result of a totally different process. It is also known that AGEs are directly responsible for ED amongst diabetics which is another interesting link.
As a result of this information, I plan on including a number of supplements that are known to actually disassemble AGEs. One, of course is ALC, which I have just tripled the dosage on. I am also continuing to take NAC, but am not increasing the dose due to concerns about potential side effects. Soon I will be adding the following: L-Carnosine and Benfotiamine-V. There are just to many things linking AGEs and Peyronies to ignore the potential for exploiting that connection. - George
Beta-Alanine can help in that regards as well.
Thanks Hitman, Good find! I was completely unaware of beta-alanine and how it fits into the picture. I discovered this blog that elucidates on the role of beta-alanine a bit. I found it quite interesting:
http://ezinearticles.com/?Beta-Alanine-Boosts-Performance-and-Prevents-Aging&id=782758 (http://ezinearticles.com/?Beta-Alanine-Boosts-Performance-and-Prevents-Aging&id=782758)
Followup note: Unfortunately Beta-Alanine does NOT work like L-Carnosine. Do not attempt to substitute. See post #1897. - George
If AGEing is largely dependent on diet and blood sugar control what about:
Apple Cider Vinegar: I have read (an article from Dr. Julian Whitaker---sorry I don't have it anymore) that taking some apple cider vinegar with a meal significantly helped lower blood sugar. Using a salad dressing of 50/50 ACV and Extra Virgin Olive Oil for example or mixed in water, etc..
QUICK AND EASY 5 BEAN SALAD:
1 can black beans
1 can kidney beans
1 can pinto beans
1 can garbanzo beans
1 pkg. frozen lima beans
1 medium size yellow or white onion
1 red bell pepper
1/2 cup extra virgin olive oil
1/2 cup organic apple cider vinegar (Bragg's brand is good)
1 handful rinsed, chopped cilantro
3 packets of Stevia powdered sweetener
Rinse, drain, and combine all of the beans in a large Tupperware container. In a food processor, add the peeled, quartered onion and seeded, quartered red pepper and cilantro. Pulse until the onion, pepper, and cilantro are chopped to desired size. Remove the ingredients from the food processor and combine with the beans. In a measuring cup, add 1/2 cup oil, 1/2 cup vinegar, and 3 packs of Stevia and stir. Pour this mixture over the beans and stir well. It is now ready to serve or cover, refrigerate, and serve chilled. It is the best if eaten within a few days. A variety of beans may be substituted. This bean salad is excellent on a bed of greens, or in a pita with cherry tomatoes. It is easy and quick to make, very colorful, and tastes great. Using the Stevia as the sweetener it should be safe for diabetics. (This salad has anti-depressive tryptophan (beans), high potassium (blood pressure/cardiovascular health),quercetin in onions (see benefits by searching at www.lef.org),cilantro (detoxifier)hhtp://www.teeccino.com/ArticleDetails.aspx?ArticleID=5 , ACV, and healthy fat (olive oil which lowers blood pressure,etc.),fiber, and complex carbs.)
Juiced Barley Powders If one does a search for the top products on the market there are some reports of people with diabetes who claim impressive results. I realize these are pretty expensive but by shopping and comparing prices this may be worth a try. (I don't sell this but it looks like this type of product may be good for Peyronies?)
Diet Check out the book Eat to Live by Dr. Fuhrman (hhtp://www.drfuhrman.com) and The China Study by Dr. Campbell I believe. Going more vegetarian as explained in these books can eliminate diabetes? (I don't sell any of these books but it looks like it would help for Peyronies and general health with blood sugar and AGEing in particular?) Also in the book Eat to Live Dr. Fuhrman explains that the different types of fats are either inflammatory or anti-inflammatory. Omega 3's (fish,walnuts,flax,etc.) are "anti-" but corn,soy (Omega 6's) promote inflammation. Therefore it is important to get more Omega 3's relative to the 6's. Also the best oil for high temp cooking is coconut oil (medium chain triglycerides) and use unheated olive oil (Omega 9's ?) for salads and pastas (Greek Mediterranean diet---Dr. Sinatra). Dr. Sinatra has a chef who writes for his newsletter that has studied foods to see which ones promote inflammation and which ones do not and she wrote a book about it. I have read that wild caught deep sea salmon eats algae which gives it the Omega 3's (anti-inflammatory) and turns the flesh pink but farm-raised salmon is grain fed, the flesh is artificially colored pink with chemicals or carbon monoxide ("tailpipe salmon") and does not contain the Omega 3's causing inflammation in our bodies. 90% of salmon on the market is farm raised they claimed. Look for the words "wild caught" when buying salmon. Also the website hhtp://www.nutritiondata.com lists inflammation ratings for foods.
Vitamin K hhtp://www.lef.org has a lot of info on vitamin k which is responsible for where calcium is deposited in your body and has a tie with blood sugar. I have heard low fat Gouda cheese is a good dietary source. Check out: hhtp://search.lef.org/cgi-src-bin/MsmGo.exe?grab_id=0&page_id=585&query=vitamin%20k&hiword=VITAM%20VITAMER%20VITAMERS%20VITAMI%20VITAMINA%20VITAMINAS%20VITAMINC%20VITAMIND%20VITAMINE%20VITAMINEN%20VITAMINES%20VITAMINIC%20VITAMINK%20VITAMINS%20k%20vitamin%20
More:
hhtp://drwhitaker.com/MainSite/HealthCenter.aspx?HealthCenter=JWHH_HC%20Blood%20Sugar%20Health
hhtp://alphaomegafood.com/testimonies.htm#diabetes
hhtp://www.hacres.com
Diabetes millitus response to 10 grams ascorbic acid by mouth.
Over the past 17 years we have studied the effect of 10 grams by mouth, in patients with diabetes mellitus. We found that every diabetic not taking supplemental vitamin C could be classified as having sub-clinical scurvey. For this reason they find it difficult to heal wounds. The diabetic patient will use the supplemental vitamin C for better utilization of his insulin. It will assist the liver in the metabolism of carbohydrates and to re-instate his body to heal wounds like normal individuals. We found that 60% of all diabetics could be controlled with diet and 10 grams ascorbic acid daily. The other 40% will need much less needle insulin and less oral medication. Contrary to what Medical News Letter, (Vol. 12 # 26, Dec. 25 1970) carried to the physicians the Tes-Tape is accurate in testing urine samples.
hhtp://www.nutri.com/wn/klenner.html
hhtp://fatresistancediet.com/chapters/fat-resistance/breakthrough-science.htm"
hhtp://www.cforyourself.com
hhtp://www.doctoryourself.com
hhtp://www.doctoryourself.com/depression.html
hhtp://www.drsinatra.com
hhtp://www.drwhitaker.com
hhtp://www.drday.com
hhtp://www.teeccino.com/articles.aspx
hhtp://www.dr-rath.com
(Dr. Rath worked with the late Linus Pauling on artery health and supporting supplements)
hhtp://www.dr-rath.com/us/products/arteriforte.html
(Note where he mentions about the amino acids L-Lysine and L-Proline preventing plaque from sticking to arteries...I have read in Dr. Julian Whitaker's newsletter (in the year 1992?) an article about vitamin C (and lipo-protein A the sticky cholesterol) where the vitamin C also prevents plaque from sticking to arteries.
Commercial links disabled by Administrator for link spamming - Hawk
George I find this to be an interesting topic although I have to admit to guarding my enthusiasm. I am wondering if you have done any reading on the impact of chromium picolinate in this process. I is commonly connected with the metabolism of sugars and insulin sensitivity.
I recently read that it was connected with some negative impact on the body as well (chromosome damage in animal models).
Quote from: Hawk on December 20, 2007, 08:54:14 PMI am wondering if you have done any reading on the impact of chromium picolinate in this process. I is commonly connected with the metabolism of sugars and insulin sensitivity.
I take it. But the problem with chromium picolinate, in my opinion, is similar to the problem with zinc. It does have toxicity in excessive amounts (which a lot of people are not aware of), and because it is so good for the problem, a lot of combination products, including daily multis, pack in the full dose. This means that if you are taking it as a supplement and taking combo products, you need to be cautious. I ran into problems with this issue with zinc. I got a bad reaction and then realized I was getting my zinc in two different places and OD'ing. So I prefer to take conservative doses of different products to achieve the same goal. But chromium picolinate is definitely a staple in glucose management. There are really quite a few good products in this regard. Banaba is an interesting approach that I plan on trying soon.
Quote from: stogie_53 on December 20, 2007, 07:26:38 PMIf AGEing is largely dependent on diet and blood sugar control what about:
Also stogie has mentioned some interesting ones below that are actually more on the order of functional foods. Apple cider vinegar for example. I use balsamic vinegar all the time, but I am really thinking that I should change that to apple cider vinegar and get the added benefit. And I don't know about Juiced Barley Powders, but I know there is research out there that indicates that MBE (Malted Barley Extract) like they use for beer does seem to lower blood sugar. And for sure fruits and vegetables are healthy, healthy, healthy. Incidentally, fruit does not run blood sugar levels up like stuff with refined sweeteners do, but as Hawk warned before, it is always important to read the labels because a lot of refined sweeteners get added to supposedly "healthy" fruit products. Vitamin K is good also and probably most people don't get enough. Multis NEVER include it for some strange reason. I take some K2. Yet another interesting functional food in this regard is cinnamon. It is also available in supplement form. Aloe Vera has also been shown to lower blood sugar.
This whole glucose cycle is just so pernicious. Its a classic biological loop. The more fat one carries on the inside, the higher their blood sugar will be, and the higher ones blood sugar, the more prone one is to add to this fat store. But there are key foods and supplements that can enable one to break that cycle. And that has to be the point, to break the cycle and, in most cases, regain a healthy fat ratio. I am 6 ft tall with an average body shape and my weight a couple of years ago was 195 lbs. My doc thought that was just fine. But actually when you do the calculations, its downright obese. Now, having come to grips with that I've got my weight down to 155. That is still too much. I don't have a whole lot of muscle at this point and should probably be down around 135 to 140 range. I am sure that this would reduce my blood sugar levels even more. I realize that this does not apply to everyone reading this forum, but I would imagine that it does apply to many. http://en.wikipedia.org/wiki/Image:Body_mass_index_chart.svg (http://en.wikipedia.org/wiki/Image:Body_mass_index_chart.svg) - George
Can anyone tell me if the arginine I plan to take for Peyronies Disease has to be the "L" variety, or is all of it the "L" variety?
On another note, George, the weight loss you are trying to achieve is way to low for a man your height. I personally think the BMI calculator is a bunch of bunk. It's a ploy by the insurance industry to make it easier for them to label us "obese" and charge us a bunch of money for insurance.
Here is an interesting article discussing biological oxidation and glycation, how they interact, and how to slow them down:
Quote from: Life Extension MagazineAntioxidants protect proteins against oxidative damage caused by free radicals, but not against equally damaging sugars. ... While antioxidants close the front door to oxidation, they leave open the back door to glycation, and the side door to metal toxicity. Antioxidants are simply not cut out to block the many biochemical pathways that damage proteins.
http://www.lef.org/magazine/mag2002/feb2002_awsi_01.html (http://www.lef.org/magazine/mag2002/feb2002_awsi_01.html)
And here is more:
http://www.lef.org/magazine/mag2005/feb2005_report_mitochon_02.htm (http://www.lef.org/magazine/mag2005/feb2005_report_mitochon_02.htm)
These give a broader picture of oxidation/nitration and glycation and the issues surrounding those processes.
Here is another fascinating overview of the underlying process and the challenges it presents:
http://www.liebertonline.com/doi/abs/10.1089/rej.2006.9.274 (http://www.liebertonline.com/doi/abs/10.1089/rej.2006.9.274)
I am frankly disturbed by the recent disregard for our PEYRONIES DISEASE forum.
The nicest way I know how to say this is that I don't give a rat's rear-end if vitamin C does or does not save people from snake bite, if it prevents hoof rot in race horses, or if it causes or cures cataracts, or grows a third eye. THIS IS A PEYRONIES DISEASE forum. We have provided an "Off Topic" area for things not DIRECTLY related to Peyronies Disease. USE IT!
To Stogie: I have tried the subtle approach to no avail. I recommend that you read the forum rules under "Read This First", and that you specifically read the warning (#9) about spamming this forum. You have plastered and spammed this forum with about 100 links in just 10 posts over a 3 day period. If I see another link for "doctor yourself " your posting rights will be temporarily suspended. After twelve thousand posts and fourteen hundred members over three years, you have become part of an exclusive group of about 4 members that have received an official warning.
I will decide how to deal with all of these links, and where to place all of these posts tomorrow. My gut response is that any post that does not directly address a study or strong evidence of relevance in treating Peyronies Disease will be moved to the "Off Topic" area. Since search engines cannot crawl or index that area, that will render any links in those posts non-existent as far as search engines are concerned.
If the posts remain in the main forum, the links will be disabled with an edit note appended to the end of the post.
These posts may just be deleted with a note that the poster can do the work of reposting them where they belong rather than pushing the added work of moving them off on me or the moderators.
Now that I am able to discontinue some of the supplements I was previously taking to prevent urinary tract infections, I am able to explore some new supplements to attempt to go after Peyronies. One of those is Benfotiamine. Since I believe that the pathways that are implicated in Peyronies are similar to those that affect diabetes sufferers, I would like to have a way to simply block those pathways. The answer, I believe, might be Benfotiamine. Note these studies:
Quote from: PubMedVitamin B1 blocks damage caused by hyperglycemia.
Obrenovich ME, Monnier VM.
Department of Pathology at Case Western Reserve University, Cleveland, OH 44106, USA. vmm3@po.cwru.edu
Diabetes accelerates the aging process and leads to complications that include blindness, renal failure, nerve damage, stroke, and cardiovascular disease. It has been hypothesized that high plasma glucose concentrations are responsible for increased mitochondrial free radical production and subsequent inactivation of glyceraldehyde phosphate dehydrogenase (GAPDH) in vascular endothelial cells and other cells implicated in these complications. As a result of the decreased ability of GAPDH to process upstream metabolites, three pathways of metabolic damage are activated, which include the advanced glycation end-product formation pathway, the protein kinase C pathway, and the hexosamine pathway. All three pathways have been implicated in abnormal cell signaling in diabetes. A group of German and U.S. scientists has now found that treating diabetic rats with high doses of benfotiamine, a lipid-soluble form of vitamin B1, can prevent diabetic retinopathy and all three forms of metabolic damage by stimulating transketolase activity and thus diverting excess metabolites toward the pentose pathway. Although vitamin B1 is available over the counter, the researchers at this time do not advocate self-treatment without further clinical data.
PMID: 12844520 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=12844520&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=12844520&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus)
Quote from: PubMedBenfotiamine blocks three major pathways of hyperglycemic damage and prevents experimental diabetic retinopathy.
Hammes HP, Du X, Edelstein D, Taguchi T, Matsumura T, Ju Q, Lin J, Bierhaus A, Nawroth P, Hannak D, Neumaier M, Bergfeld R, Giardino I, Brownlee M.
Medical Clinic V, School of Clinical Medicine, Mannheim, Germany.
Three of the major biochemical pathways implicated in the pathogenesis of hyperglycemia induced vascular damage (the hexosamine pathway, the advanced glycation end product (AGE) formation pathway and the diacylglycerol (DAG)-protein kinase C (PKC) pathway) are activated by increased availability of the glycolytic metabolites glyceraldehyde-3-phosphate and fructose-6-phosphate. We have discovered that the lipid-soluble thiamine derivative benfotiamine can inhibit these three pathways, as well as hyperglycemia-associated NF-kappaB activation, by activating the pentose phosphate pathway enzyme transketolase, which converts glyceraldehyde-3-phosphate and fructose-6-phosphate into pentose-5-phosphates and other sugars. In retinas of diabetic animals, benfotiamine treatment inhibited these three pathways and NF-kappaB activation by activating transketolase, and also prevented experimental diabetic retinopathy. The ability of benfotiamine to inhibit three major pathways simultaneously might be clinically useful in preventing the development and progression of diabetic complications.
PMID: 12592403 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=retrieve&db=pubmed&list_uids=12592403&dopt=AbstractPlus (http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=retrieve&db=pubmed&list_uids=12592403&dopt=AbstractPlus)
Quote from: PubMedPrevention of incipient diabetic nephropathy by high-dose thiamine and benfotiamine.
Babaei-Jadidi R, Karachalias N, Ahmed N, Battah S, Thornalley PJ.
Department of Biological Sciences, University of Essex, Central Campus, Wivenhoe Park, Colchester, Essex, UK.
Accumulation of triosephosphates arising from high cytosolic glucose concentrations in hyperglycemia is the trigger for biochemical dysfunction leading to the development of diabetic nephropathy-a common complication of diabetes associated with a high risk of cardiovascular disease and mortality. Here we report that stimulation of the reductive pentosephosphate pathway by high-dose therapy with thiamine and the thiamine monophosphate derivative benfotiamine countered the accumulation of triosephosphates in experimental diabetes and inhibited the development of incipient nephropathy. High-dose thiamine and benfotiamine therapy increased transketolase expression in renal glomeruli, increased the conversion of triosephosphates to ribose-5-phosphate, and strongly inhibited the development of microalbuminuria. This was associated with decreased activation of protein kinase C and decreased protein glycation and oxidative stress-three major pathways of biochemical dysfunction in hyperglycemia. Benfotiamine also inhibited diabetes-induced hyperfiltration. This was achieved without change in elevated plasma glucose concentration and glycated hemoglobin in the diabetic state. High-dose thiamine and benfotiamine therapy is a potential novel strategy for the prevention of clinical diabetic nephropathy.
PMID: 12882930 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=12882930&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=12882930&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus)
I could go on. Research seems to show that Benfotiamine is a powerful drug that halts glycation and other damaging processes that precipitate a number of fibrotic diseases. IF this is indeed true, taking Benfotiamine could very well allow normal collagen and elastin turnover to gradually repair the damage caused by detrimental glucose mediated processes. I would submit that this is just one additional oral supplement that holds promise in the battle against Peyronies. And, I for one, plan to find out what it can do for me. - George
QuoteIf you think that AGE/ALE formation is not a concern because your blood sugar levels are normal, you are mistaken. It is well know that circulating levels of Hb AIc - the product of the non-enzymatic glycation of hemoglobin with glucose - is normally roughly 4% of total hemoglobin. This level is 3-5 times higher in diabetics, but 4% is clearly a concern. If 4% of our weight is constituted of damaged tissue, it means that the average man carries 7lbs of dead weight, in this case comprised of harmful compounds that impede tissue function, stimulate inflammation, promote cellular dysfunction and lead to genetic mayhem. ... It has been said that life is the prevalence of the biological over the chemical. Glycation is the perfect example; it is a spontaneous, chemical and detrimental reaction occurring in our body without the control of enzymes. Our body's response to it is to trap reactive sugar molecules and prevent the permanent glycation of proteins. Pyridoxamine and Benfotiamine feed those reactions and offer protection against tissue damage associated with AGE/ALE formation in the body. They are a useful ally in the treatment and prevention of a wide range of conditions including diabetes, atherosclerosis, renal failure, inflammation and neurodegeneration. Finally and perhaps above all, they lead the way as new anti-aging therapies.
http://www.aor.ca/int/magazines/pdf/Vol3%20Issue1%20Pyridoxamine%20&%20Benfotiamine.pdf (http://www.aor.ca/int/magazines/pdf/Vol3%20Issue1%20Pyridoxamine%20&%20Benfotiamine.pdf)
You make some good posts dealing with controlling AGE and good posts explaining the AGE process. What is still missing is any convincing information that it matters. Perfectly controlling or eliminating AGE may have NO impact Peyronies Disease.
That it would seem, is square one.
I can spend a life time (assuming I had funding and the training) on researching how to control any physiological process only to find out it had no impact whatsoever on the disease I was attempting to combat.
Hawk, As I understand Peyronies, it is all about the tight crosslinking of collagen that causes the tissue in question to lose its elasticity. AGE are what cause tight crosslinking of collagen. Are you suggesting that their may be some other "unknown" process by which this may occur? I note that Dr. Levine refers to exactly this process in his book about Peyronies and other papers also attribute Peyronies to AGE. What research are you aware of that would attribute the crosslinking involved in Peyronies to another process? Also, Peyronies in diabetics has been linked to AGE. Are you suggesting that Peyronies in diabetics results from a different process than Peyronies in non-diabetics? Also, AGE has been extensively linked to other types of fibrosis and identified as its direct cause. I would suggest that there is abundant evidence to implicate AGE in Peyronies. - George
Here is an excerpt from a paper linking AGE and ED in diabetics and the description it contains certainly sounds like it could easily encompass Peyronies:
Quote from: American Journal of Managed CareAbnormalities in the vascular, neural, endocrine, muscular, or psychiatric systems can result in ED.2,3 EDDM is due to multisystemic disease. Atrophy or apoptosis of cavernosal smooth muscle can occur due to loss of Bcl-2 expression in cavernosal smooth muscle and lead to ED. Abnormal amounts of advanced glycation end products is a common occurrence. These chemicals may have an effect on potassium channels that facilitate intracellular calcium release and subsequent cavernosal smooth muscle relaxation. Connective tissue synthesis is increased due to transforming growth factor-beta. The decrease in smooth muscle and the increase in collagen decreases the compliance of the erectile tissue. Neuropathic damage to both the somatic and autonomic nerves has been clearly defined in DM. Partial occlusion of the pelvic or intracavernosal arteries, hypogonadotropic hypogonadism, and depression associated with a chronic illness (DM) can all play a primary or secondary role in the development of EDDM. On a molecular level, studies have demonstrated decreased levels of endothelial and neuronal nitric acid synthase (NS) and decreased cavernosal artery and sinusoidal response to nitric oxide. Abnormalities in nitric oxide rapidly render the functional syncytium of the corpora cavernosa unable to synchronously relax. As the patient with diabetes ages, the concentration of constrictors, including endothelin, prostanoids, and possibly angiotensin, increases as the production of the relaxants, including nitric oxide, vasointestinal peptide, and prostacyclin, decreases.
http://www.ajmc.com/Article.cfm?Menu=1&ID=2526 (http://www.ajmc.com/Article.cfm?Menu=1&ID=2526)
Also note that Synvista has a product in the pipeline that is an "AGE-breaker" (http://www.alteon.com/cross1.htm (http://www.alteon.com/cross1.htm)). Note that the patent on THAT drug states:
Quote from: Patent StormFibrotic diseases further include diseases that have as a manifestation fibrotic disease of the penis, including Peyronie's disease (fibrosis of the cavernous sheaths leading to contracture of the investing fascia of the corpora, resulting in a deviated and painful erection). Treatment using the invention is expected to treat, prevent, reduce or ameliorate such diseases, or hypertrophy, fibrotic hypertrophy or fibrosis in such diseases.
http://www.patentstorm.us/patents/6596745-description.html (http://www.patentstorm.us/patents/6596745-description.html)
Here is a company that has invested significant R+D money on a product that addresses Peyronies via the AGE process. I am not making this up out of my head. There is a connection between AGE and Peyronies.
Hi all,
Have a quick question. I have been feeling dizzy or light headed sometimes during the day. Not too bad, but enough to make me stop and think.
I am taking Pentox 400 x 2 daily, Vit E 400 x 2 daily, 2 x capsules of VasoFlow, 1 gram of ALC twice daily.
I read here somewhere that Vitamin could make you dizzy. Is this correct? or may be some thing else in these supplements. I have stopped Vit E today just to see if it makes a difference.
Otherwise, I will check with my dr.
Thanks in advance
Pal
I hope you are checking your blood pressure. Light headed dizzy feelings can happen with low blood pressure. If that were the case, the most likely culprit would be the VasoFlow since it can lower blood pressure in cases were blood pressure tends to be low in the first place. - George
George,
I am not checking blood pressure at home but whenever I go to Dr. they tell me it is perfect. Could the vasoflow I take before breakfast and before dinner be the culprit ?
I could stop that for a while too
Thanks,
Pal
My thought on the VasoFlow was that it could be lowering your blood pressure enough to cause the dizziness, but if your bp is perfect, then I don't know??? I guess see if stopping the E for a while helps, then try stopping each one. But on the other hand, it might not be a supplement that is causing this at all. It could even be a virus, they definitely CAN cause these kinds of problems. It might be a good idea to let your doctor know what is going on. You might try using Google with each one of these supplements to see if you get any hits on "dizziness". None of these supps sound like they should cause this kind of problem to me, but who knows? - George
Update ... I just found this with a quick Google search:
Quote from: Drugs.comPentoxifylline may cause dizziness or blurred vision. These effects may be worse if you take it with alcohol or certain medicines. Use Pentoxifylline with caution. Do not drive or perform other possibly unsafe tasks until you know how you react to it.
http://www.drugs.com/cdi/pentoxifylline.html (http://www.drugs.com/cdi/pentoxifylline.html)
George,
Thanks for the info. It could be the just the combination of Pentox with the other supplements. Who knows. I will try and check it out with my Dr. to be on the safe side and may also stop one suplement at a time to see.
Thanks again,
Pal
I have Peyronies Disease my urologist confirmed it. >:( Looks like I had it for 3 months or so. Like most urologist he told me to take vitamin E and wait for 6 months to see if it well go away on it own. I am 44 years old.
I still can have hard-on but sometimes they are not as hard as they use to be. The penis is curved upward around 20 degrees. Have some pain. Understand there is no cure.
Been reading this forum for the last 2 night's lots of info.
Want to start taking more than just vitamin E. looks like everybody has their own remedy
If anybody can give me guidance on what to take and how much, and were I can buy it online. I know lots a people will say just search the forum, but like I said read the forum for 6 hours; I am more confused then ever. Thanks in advance.
Skip
Vitamin E:
I took it for years following my diagnosis with Peyronies. I took 400 IU 3 times a day. Store brand worked just as well as name brands. This was the advise of my Dr. at the time.
I took it for about 12 years until I had to have stints put in my heart and went on Plavix. Heart Dr said to quit the Vitamin E while on Plavix and I will be on it for life.
My initial treatment for Peyronies was Vitamin E 400 IU three times a day an potaba. Curve self corrected in about a year.
Jackp
Hang in there Skip. it's easier to keep up than it is to catch up.
I tend to think that a "broad spectrum" vitamin E is worth getting. The best way to search the forum for links might be to key in multiple terms in the search engine. You can put an entire phrase in quotes (ie "vitamin E") and other terms and only posts with all of the terms will pop up. Doing that with the word "Source" I found this post by George (remember that when you follow a link, you can then search the opened webpage using "Control-F" for key words too):
***************
I am getting queries as to where to obtain the best grade of Vitamin E to deal with Peyronies. So I am going to attempt some suggestions in the form of links (and please don't take the order of the links as a ranking, I am NOT recommending one of these products above another):
From GNC:
http://www.gnc.com/product/index.jsp?productId=2133477&
From Vitamin Shoppe:
http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=SO-1759
http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=KA-1756
From iHerb.com:
http://www.iherb.com/store/ProductDetails.aspx?c=Herbs&pid=NOW-00811
From Natural Supplement Center:
http://store.nationalsupplementcenter.com/mf20011.html
From Nutrition Surplus:
http://www.nutritionsurplus.com/index.cfm/FuseAction/Shopping.ProductDetails/productid/17745.html
All of these SEEM to be good products. Some of these vendors have retail outlets in addition to their web stores. This is by no means an exhaustive list. In the past I have used the NeoMedica product available from Nutrition Surplus. I am now using the NOW Foods product from iHerb.
- George
******************************
Not too hard once you try it out. It's figuring out what to look for that takes more time!
Tim
I was on the vita-E for a few years, 400iu twice a day,,,i started having the dizzy spells a lot and didn't know why until i read about it being a blood thinner,so i stopped taking it and my dizzy spells went away....
This is just my 2 cents worth,,,,,,kimo
Kimo,
Thanks for the info. How long after you stopped the Vit E did the dizzy spells stop ?
Pal
Pal,
Clearly any of these, or a combination of these, or none of these supplements that is causing the problem. Only the systematic process of elimination will tell you. Eliminate them one at a time. If it continues then resume that one and eliminate another. If these are serious near fainting or falling type of dizziness, go to a doctor. I would also buy a BP cuff to check your BP when you are dizzy to see if it is BP related at all as opposed to inner ear issues.
I am in fairly good shape and I had a bout of dizziness or balance issues for about a 2 week period when I was on no supplements and it just went away so there is no way to just guess.
If it is a supplement, it is a crap shoot but I bet on L-Arginine
Thanks you guys for replying so fast to my question. I am taking vitamin E 2 time a day 1 in the morning 1000iu and in the evening 400iu.
Jackp you mentioned that you were taking 3 times a day of 400 IU, I think I will do the same from now on.
Tim thanks on the info were to buy the vitamins.
Should I be taking anything else?
Thanks again to everybody for the help.
Peyronies is a disease that effects collagen and elastin in the penis. Collagen and elastin are proteins that are part of the extra-cellular matrix that forms the scaffolding for the living tissue. There are three distinct processes that damage this scaffolding by modifying these proteins in a detrimental way, either taking something away from their structure or adding something to it. These are 1) Oxidation, 2) Nitration, and 3) Glycation. Standard Vitamin E blocks oxidation by becoming oxidized itself, thus scavenging the free radical before it can damage tissue. Full spectrum Vitamin E not only blocks oxidation, but the gamma-tocopherol it contains also blocks nitration by scavenging nitrogen free radicals. But if one cannot tolerate Vitamin E, this is not a problem since other supplements offer the same capabilities. My approach is to take small amounts of multiple supplements that limit the above three processes. This is one facet of attacking Peyronies: Attempting to limit oxidation, nitration and glycation. There are, of course, other strategies which are unrelated to these particular vectors. - George
Pal,,,,If i remember right it was about 4 to 5 weeks before all my dizzy spells went away....I haven't had any since, been about a yr...I'm sure thats what it was for me as i wasn't taking anything else...I was on the Vita-E for about 8 yrs total.
This is just my opinion,,,,,,kimo
Kimo, your sharing this about Vitamin E is just one more little indicator as to the huge value of this forum. I never, ever would have guessed that Vitamin E could do this even in my most wild imagination. But your sharing your experience may well save pal a lot of trouble and confusion. And this thing about Vitamin E and dizziness is good for all of us to be aware of for future reference. Thanks so much for sharing! - George
Kimo and George,
Thanks for all the help !
I am now thinking that I would need to stop the Vitamin E for a while. I have been on it for years. However, I would not want the Peyronies Disease situation to get worse. Eventhough it has not gotten better all this time on the E.
May be I can substitute something else for it.
Thanks again,
Pal
Thanks Hawk,
I think the process of elemenation is the way to go.
Pal
For a long time now I have been beating the drums for fish oil, flax oil, and other omega-3 rich products because of their potential impact on lowering systemic inflammation. But it gets even better. Turns out that omega-3's can potentially bust Alzheimers plaques. Could it be that they might work similarly against Peyronies plaques?
Quote from: Health DayPublishing in the Dec. 26 issue of the Journal of Neuroscience, the scientists demonstrated that the omega-3 fatty acid docosahexaenoic acid (DHA) increases the production of LR11, a protein that is found at reduced levels in Alzheimer's patients. LR11 is known to destroy the protein that forms the plaques associated with the disease, the researchers explained.
http://www.healthday.com/Article.asp?AID=611297 (http://www.healthday.com/Article.asp?AID=611297)
With each new research report more and more of the pieces of the puzzle fall together in terms of how what we eat and drink (or neglect to eat or drink) can radically affect our health.
Pal,
One more thing. If the dizziness stops after discontinuing a substance, you have to restart the substance to KNOW if that was the problem. For instance, in Kimo's case, it could be like my case where something just cleared up and it happened to take place 5 weeks after stopping vitamin E. My actual testing on the blood thinning results of vitamin indicate that for me, all blood thinning results of vitamin E are out of the body much sooner than that.
We know that just because an action precedes a result does not mean that it caused the result.
Hawk,
Are you saying that I might be doing myself harm by using L-Arginine instead of a different variety. I'm not sure which section contained the info I'm referring to, but I'm almost sure you said plain L-Arginine would cause collagen. Correct me if I'm wrong, please.
Back in post #1864 in this thread, I commented on how L-Carnosine has been shown to block glycation, and in doing so, block the process of fibrosis. It is believed that L-Carnosine is broken down in the gut into Beta-Alanine and L-Histadine. Therefore, some have theorized that a better approach would be to supplement with Beta-Alanine instead of L-Carnosine. Hitman brought this up in post #1865 and I saw no flaws in that logic and in fact discovered a blog presenting exactly that concept in relation to glycation and posted the link in post #1866. However, I now discover that some enterprising Russian researchers have actually done a research project looking at this very issue and their conclusions are mind boggling:
Quote from: BioProt NetworkMoreover, A. Hipkiss describes in this volume how carnosine, being a potent antiglycating agent, may suppress the deleterious effects of protein carbonyls by reacting with them to form adducts, which may either prevent their interaction with scavenging AGE (Advanced Glycated End Products) "receptors" (RAGES), or alter the cellular response by modulating signal transduction and subsequent generation of ROS.
It is known that carnosine is metabolized into beta-alanine and L-histidine and as they are both biologically active molecules, they could have played some role in the anti-senescence effect of carnosine in SAM. However, according to data obtained in our experiments we observed no effect of these compounds on the mean lifespan when animals were treated with the mixture of beta-alanine and L-histidine, taken in the same molar proportion as they are in carnosine (figure). This treatment also had no influence on the exterior of the animals, unlike the effect carnosine produced. Analysis of these data shows that carnosine acts as a true antioxidant protector rather than as an anabolic drug; the weight of the animals treated with carnosine was not significantly different from that of the control animals (table).
Anyway, the question "How could such a small molecule have such profound effects?" remains unanswered, though we hope through increased global scientific collaboration that we shall have the answers sooner rather than later.
The authors are particularly grateful to Professor A. Boldyrev who has supervised this entire anti-senescence project and devoted much time and energy to it. We are also grateful to all the staff of Moscow State University and the Institute of Neurology (Russian Academy Medical Sciences, Moscow) who worked on this project. Steven Gallant wishes to personally thank Paul Michaels for his help and encouragement at the beginning of the project. We are further grateful to all those who took part in this project but are too numerous to name.
The study was supported by the Russian Foundation for Basic Research (grant No. 00-04-48767).
http://protein.bio.msu.ru/biokhimiya/contents/v65/full/65071018.html (http://protein.bio.msu.ru/biokhimiya/contents/v65/full/65071018.html)
So DON'T attempt to substitute Beta Alanine for L-Carnosine. I not only won't be more effective, it won't be effective at all. Of the two, only L-Carnosine has true anti-glycation capabilities. - George
has anybody looked into Pyridoxamine. I do believe it can help with AGE
http://www.nature.com/ki/journal/v70/n3/abs/5001578a.html
Pyridoxamine is a modified form of one of the B Vitamins and it has shown promise in treating some forms of fibrosis. I am planning to order it with my next supplement order in January and put it to the test. - George
This may be simplistic, but to anyone that does strive for a diet with a low glycemic index, there is only one added sweetener I recommend - Stevia Plus. It not only does a great job sweetening (4X the sweetening of cane sugar), but it is zero on the glycemic index. On top of that the "plus" part is that it has a prebiotic additive that promotes healthy intestinal bacteria.
This stuff makes it easy to buy stuff like plain unsweetened yogart, juices, etc and sweeten them yourself. This makes it easier to avoid sugars and artificial sweeteners. There is no need to ever add sugar or artificial sweeteners to your food. There may be other good products. I have seen sweeteners for diabetics on the shelf that I know little about but Stevia (a natural plant substance) is great even if a little pricey. Remember it is both healthy and 4 times sweeter than sugar when you consider the price.
PS: You can find this is most any health food store
Hawk,,,,you say [ prebiotic ],,,,do you mean probiotic ? I take a probiotic and fish oil twice a day for my intestinal problems caused from the parasite damage i got 2 yrs ago,,,,the probiotic helps me to be able to live without pain....The probiotic brand that i use comes from a company called
Garden of Life and the name on the bottle is called Primal Defense....It's not cheap,,but much cheaper to get it off the internet....It's been a life saver for me, i was in so much pain for 2 yrs until i started using this stuff..
Also, i have been using the stevia product for quite sometime and you are right on about it,,it's great stuff....
This is just my opinion, and i hope it helps someone .....Happy New Year everyone and blelssings to all who make this forum so great....
Kimo
I'm not a fan of stevia because of its horrible taste. I use a small amount of honey from time to time or splenda.
Horrible Taste ???
That statement shocked me. I guess it just illustrates difference in taste unless all stevia is not created equally. I tend toward being nit picky about sweeteners (old sugar junky). Even dipping my finger into the Stevia Plus product I use and placing it directly on my tongue it tastes great. Stevia's main attraction next to the health benefits is that it has NO aftertaste. It is also stable when heated or frozen.
Even though I used to maintain a couple bee hives and liked to taste different types of honey I consider them just sugar for blood sugar purposes. Most commercially available honey is about as high in the Glycemic Index (GI) as cane sugar and all honey is high. Stevia is zero in the GI.
Spenda is an artificial chemical sweetener and not a natural substance. I am not one that maintains anything natural is good for the body but I am one that has seen too many man-made chemical substitutes that seemed like a great idea, end up as bad news.
Quote from: Kimo on January 01, 2008, 12:03:15 AM
Hawk,,,,you say [ prebiotic ],,,,do you mean probiotic ? Kimo
Kimo,
Prebiotic is actually a nutritional base that selectively feeds probiotic or healthy bacteria in the intestinal tract.
PS: I should add that "Stevia Plus"
claims to do this. I have
not investigated that part of the claim.
I have just a word of warning about ALL zero calorie sweeteners. Not long ago, it was discovered that zero calorie soft drinks are implicated in diabetes to nearly the same degree as conventional soft drinks. Why? That is the million dollar question. Personally, I believe it is because there are more things at work here than either calories OR glycemic index. There is also the fact that "sweetness" itself has an effect of body chemistry. It is known for example that "sweetness" alone tends to drive hunger, and if it can drive hunger, it can also drive other more subtle body chemistry issues. Hawk is correct in rebutting this assertion, there is not factual evidence to back it up and, in fact, there is some to refute it. However, no sweeteners contribute to satisfying hunger, but added fruit products contain nutrients that do. For this reason, I have pretty much abandoned all sweeteners and try to use fruit products whenever possible to sweeten. Occasionally, of course, sweeteners are unavoidable, but I do try to avoid them whenever possible. But, Hawk, I have to admit that my point is a petty one, so enjoy your Stevia! And incidentally, if you search the web you will find some warnings on Stevia. At one point the FDA even tried to ban it due to certain health concerns. But at this point the WHO has pointed out extreme deficiencies in the studies that knocked it and have given it a clean bill of health and their "seal of approval". - George
Quote from: George999 on January 01, 2008, 01:09:23 PM
For this reason, I have pretty much abandoned all sweeteners and try to use fruit products whenever possible to sweeten.
George,
The correlation to that would be me saying, "I try to avoid cane sugar, sucrose and fructose which elevate blood sugar. Instead I go with the natural sweetening effects of the stevia leaf that studes show have no impact on blood sugar.
Keep in mind, no artificially flavored soft drinks use stevia. People that drink soft drinks are not health and nutrition conscious people. The guess that the taste of sweet somehow causes diabetes seems to stretch a mile beyond any research. The people I know that guzzle diet softdrinks, literally eat pies and cakes in one sitting. I think it is much more likely that people sucking in nutrisweet and splenda have associated diet choices that others do not have. These associated diet choices are much more likely to be the culprit rather than the these sweeteners.
In any case, none of this has anything to do with stevia since it is not used in softdrinks.
I am pretty sure that artificial sweeteners stimulate the appetite, and thus may indirectly lead to increased caloric intake. Additionally, the belief that one gets some"free" calories because of not having had them in the drink, may lead to overeating as well.
Unlike drinking a glass of water, though, a sweetened glass of anything may leave one still feeling hungy.
Tim
Here are some interesting studies listed on a web site that may or may not sell products. I do know that stevia has been the subject of studies at levels 1000 times greater than human consumption with no NEGATIVE results. At least at one time, the FDA would not allow it to be called a sweetener but rather a supplement ??? Go figure ???
http://www.stevia.net/safety.htm
I am also not advocating zero calorie drinks. My mind set does not even grasp the concept. I use stevia to sweeten plain yogart, smoothies, etc to replace sucrose, corn syrups etc. These drinks have high protein, fibre, and omega 3 content and no NOT leave you hungry.
Hawk, you are making some very valid points here and as you have perhaps already noted, I have modified my original post. I still do think that fruit is a healthier alternative, but I realize that in some situations, fruit alone won't do the job. I have long believed that sweeteners stimulate hunger, but, in fact, the studies available indicate exactly the opposite, but they also indicate that sweeteners contribute nothing to satiating hunger, and perhaps that is the message that needs to be sent. But thanks for setting me straight on this, and don't hesitate to remind me again if I backslide ;D. - George
"Artificial Sweeteners May Trick the Brain
"In the study, published in the July issue of the International Journal of Obesity, two groups of rats were fed either a mix of high-calorie, sugar-sweetened, and low-calorie, artificially sweetened liquids; or sugar-sweetened liquids alone. This was fed to the rats in addition their regular diet. After 10 days, they were offered a high-calorie, chocolate-flavored snack.
"The study showed that rats fed the mixed liquids ate more of their regular chow after the sweet snack than those who had been fed sugar-sweetened liquids alone.
"Researchers say the results show that the experience of drinking artificially sweetened, low-calorie liquids had damaged the rats' natural ability to compensate for the calories in the snack. "
I guess the moral to that study would be: If you have no more accountability over the quantity of food you eat than a rat (albeit rather sophisticated rats), then you should eat sugar rather than artificial sweeteners.
Are there any studies on natural sweeteners such as stevia with a little higher life form, say like maybe urologists? ;D
I'll take splenda and manuka honey any time over stevia ;D
the only reason I bought it is because I heard that it can lower blood glucose levels. However I'm not sure about this.
What I do know is that in my own case, eliminating the sweeteners has certainly seemed to diminish my hunger pangs over the long term. I know that is highly subjective. And I DO like sweeteners, but the perceived benefit of passing on them has just been too great for me to pass up. And by the way, when it comes to hunger, the word is that a product called Simmondsin works quite well. I haven't tried it yet, but I was seriously looking at it. And it pays to seriously look at these things, because they have to potential of biting back.
QuoteImpact Statements
Simmondsin is presently being marketed on the Internet in weight loss products. As it is being
sold as a natural food product,it bypasses the strict regulations imposed on weight loss drugs. It
is still important to evaluate the safety of this compound since it is being sold as a supplement
to humans and being considered as an ingredient in several animal diets.This study set out to
confirm the ability of this compound to decrease food intake – producing a decrease in weight
gain – and to look for any toxic effects.The following goals were accomplished:
♦ The compound, simmondsin, produced a very effective, consistent decrease in food
intake in growing rats, resulting in a decrease in weight gain.
♦ It was also observed to produce a toxic effects in the rats, demonstrated by a decrease
in the level of blood components (red blood cells and hemoglobin), increased levels of
serum alkaline phosphatase, and an increase in organ weights.
♦ These results suggest this compound in not safe for human or animal consumption in
the doses fed in this study over the three-month period of time.
♦ Simmondsin is very effective in suppressing food intake.
♦ Simmondsin produces a toxic effect when fed in high doses over a three-month period.
♦ The mechanism of how simmondsin produces a decrease in food intake could be a
very useful model to study regulation of food intake.
♦ Products currently on the market containing simmondsin should be recalled due the
toxic effect of this compound until further studies understanding the mechanism are
conducted.
ari.calpoly.edu/images/46680%20Pedersen%20simmondsin.pdf (http://ari.calpoly.edu/images/46680%20Pedersen%20simmondsin.pdf)
Yuch! Have a great New Year everyone! - George
Hi,
may I know what is Pentox and where can I get it?
Hi Jacqueslee,
Pentox is short for pentoxifylline which is the generic form of a prescription drug called Trental.
You can get this by a prescription from your dr.
Some of us here take other supplements like L-arginine as well as Vitamin E etc. Please look through the Oral treatment section for more info.
Actually the site is full of other usefull information. Please take the time to go through the posts and you will find a wealth of information. I know I benefited so much from the advice of the good people here.
Pal
The rat data was used by me to help understand the recent study that showed that those who drink diet pop are more likely to be obese than those who do not. This may be an epiphenomena (meaning related but not cause and effect), but the correlation was tight - the more diet soda the more overweight you are. Clearly something was altered in the "thermostat" for appetite (regulated by leptin and ghrelin, among others). I am lucky in that I cannot stand almost any artificial sweeteners (none so far taste acceptable to me).
The issue of adding sweets to it's effect on appetite is tough. Sweets generally add calories, hence the weight gain. But it may be more complicated than that, and it may have a positive effect on appetite.
Tim
OK, I know about Arginine's effect on NO, but what if I don't have an erection problem? Can L-Arginine do anything to correct my curve? I'm going online soon to order supplements and need to know before I put a lot of money into this stuff.
I think Arginine is still good to take for peyronie regardless. I think Tim posted a few studies on the effect of the PAV (Pentox, Arginine, Viagra) in reversing fibrosis. I could be wrong but someone else may chime in with their thoughts too.
Good Luck
Pal
I too have found Arginine to be somewhat helpful. But right now, I am almost two weeks into a shift to an anti-glycation supplement stack. At this point, I am pretty much convinced I am getting more traction out of that, than out of the previous approach. I am currently taking as part of that stack:
L Carnosine - 500mg - 2XDaily
Acetyl L Carnitine - 500mg - 2XDaily
N Acetyl Cysteine - 600mg - 1XDaily
Benfotiamine - 150mg - 4XDaily
So am now in the process of scaling back things like Arginine, HGW, and OPCs and even Vitamin E. When my current supply is finished, I will not be likely to reorder them. What I am planning to do is add more anti-glycants and really pound on that vector:
Propionyl-L-Carnitine
Pyridoxamine
Pyruvate
Mangosteen
Also:
Banaba (drives down blood sugar - not for anyone who already has low blood sugar)
If this comes anywhere to doubling the effects of what I am already taking, I will be delighted. - George
PS - The success of an anti-glycant supplement stack would in no way invalidate Pentox, since Pentox is a powerful anti-glycant.
I never knew Banaba and Mangosteen had anti-glycation effects. interesting :o
Quote from: George999 on January 05, 2008, 01:32:06 PM
I too have found Arginine to be somewhat helpful. But right now, I am almost two weeks into a shift to an anti-glycation supplement stack. At this point, I am pretty much convinced I am getting more traction out of that, than out of the previous approach. I am currently taking as part of that stack:
George,
What do you mean by this statement: "I am getting more traction out of that" with regards to your anti-glacantion pack? Are you saying that you already have experienced improvement in the short time you have been taking it. If so, what is the nature of the improvement?
Also, are you going to take both forms of L-Carnitine, and how many of the items in your list requires a prescription?
Hitman, Mangosteen contains garcinol which is a fairly potent anti-glycation factor. Banaba is actually not directly associated with anti-glycation, but rather is a potent supplement in terms of driving down blood sugar to the point that there are warnings on it that it can induce acute hypoglycemia. But lowering blood sugar levels (since mine have been quite high in recent years) should help me knock down glycation. I would NOT recommend banaba to someone who already has blood sugar levels who are low, so thank you for bringing this up.
bodoo2u, What I mean is, it has noticeably and consistantly decreased the palpability of my plaques almost to the point that they are no longer perceptible. I really like this effect since it indicates to me that it is actively killing the localized inflammation that is being generated by the Peyronies and is part of what fuels its advance. I got a similar effect with the topical Camphor when I tried that, but was unable to continue with that because of the side effects I was getting with the camphor, but actually the effect of these supplements is probably at least doubly more potent than what I was getting from the camphor. And I also believe I am seeing some "relaxation" of the bend. (Over the past year I have developed a slight upward bend just shy of the glans right where one of the palpable plaques is located). So while my Peyronies has been largely dormant since I had the nasty experience with the time where I increased my sugar intake and it really became aggressive, this new approach has seemingly resulted in actually causing it to regress some. I know that everything is subjective when it comes to evaluating ones own Peyronies, but I am really convinced none the less that something is actually working here, and so I am determined to investigate it further by stacking as many of these things together as I can. I have used several of them in the past, but I have never actually tried to leverage them by stacking them. I am currently using ONLY the ALC form of Carnitine, but I am going to move to a "full spectrum" form that includes the other variants. None of these products requires a prescription. There are a handful of other anti-glycants such as Pentox itself that do require prescriptions. The ONLY two substances that have generated any positive results so far against Peyronies in terms of research are Pentox and ALC, and just about the only thing that these two have in common IS that they are both anti-glycants. The discovery of that fact is one of the things that has reinforced my determination to explore this approach. - George
George,
Where are you buying all of these supplements and how did you determine dosages?
Thanks.
Guys, I'm seeing an Endocrinologist Wednesday because I found out I have low testosterone (235), which is probably behind my lack of nocturnal/spontaneous/morning erections, and the reason why I find Viagra to be a boost (I'd always attributed it to the distal softness as a result of Peyronies a few years ago, but now I think my problems with ED center around my testosterone.) Ironically though, I think the low testosterone level is why I find Viagra to sometimes work better than others.
My question is, since I took that initial testosterone test a few months ago, I've been using L-Arginine (3g per day). Does anyone know if the arginine is going to throw off my testosterone test results that the Endo will undoubtedly give me? I don't want a higher reading than is actually the case if I were on my own. Anyone know if the arginine will muck with a testosterone test?
Thanks,
Nemo
Nemo
Testestorone Replacement is seldom a cure for ED. It can cause lack of libido and other problems but take it from me it did not help ED. For good health get your T into the upper ranges of your labs. Mine fell to 120 and I now do 300 mg every 10 days. That helps libido, mental and physical health but not ED.
Go to a good urologist and be tested for venous leakage, peronies and BPH. Endos do not do these test.
Good luck, my peyronies lead to fibrosis in the corpora. My $.02 do not do penile injections if you have a history of peronies. Penile injections make the fibrous worse and lead to 100% ED.
Good luck let us know how you come out.
Jackp
I realize T replacement isn't a first line treatment for ED, but I'm talking about nocturnal/spontaneous/morning erections, which are heavily influenced by Testosterone. My Uro has known about my Peyronie's for years and is the one who prescribes me the Viagra. At any rate, a 36yr old with a 235 T score is not right. My question, again, was whether L-Arginine affect my T score on a blood test?
california, All of these supplements are commonly available in the health food/nutritional outlets, both online and on the street. In most cases I am currently going with the dosages on the containers, except for NAC where I am being a bit conservative. I will probably be adjusting some of those dosages down a bit as I go along in order to try to avoid any potential side effects. - George
Arginine will not affect your testosterone levels.
I disagree that testosterone will not help ED. For some men, it does. IT has been shown that for non-responders to Viagra, Testosterone can help. Conversely, adding Viagra to someone on testosterone can also help ED. So the combination has been shown to be of help in lots of men - and each alone has been found to be helpful to some.
Tim,,,i totally agree with you. When i was on testoserone replacement it helped me a great deal,,my energy level went way up,,,,My nocturnal erections came back to a degree and i felt really good over all..It didn't solve all my ED problems, but it sure helped and when i started taking viagra along with it, it was a lot better for me. The combination worked very good for me and i would highly recommend it to anyone....
Just my 2 cents worth.........Kimo
Thanks, gents. I have mixed feelings about getting on Testosterone replacement - I am excited by the prospect that it can boost my energy and sense of wellbeing, not to mention libido and erectile function, but I'm scared of what it can do to the prostate (speeding the growth of any cancer cells that may exist) not to mention the risk of gynecomastia (man boobs). Messing with hormones is scary stuff, but I'm ready to turn it over to an Endo and see what they think. My Uro was totally dismissive saying, "You don't want to get on testosterone, you'll be on it the rest of your life." But I know not getting nocturnals, etc. ain't right, and to me, this means my body needs to be put back in balance.
My other concern is in the course of my life, dating back to high school, I've had a couple run ins with low grade prostate infection, causing the sensation that I have to pee. It's not BPH, it's a non-bacterial infection they call it. I'm dealing with one right now triggered by holding my pee too long on a road trip. I hadn't had one in about 6 years, but the timing sucks as Testosterone replacement is known to increase the size of the prostate a little, and I hope the mild prostatitis I'm "enjoying" right now doesn't prevent me from getting on the treatment. We'll see what the Endo says. I'm sure she'll want to thoroughly investigate why my T is so low to begin with though before doing anything else.
Nemo,,,,When i was on Testosterone replacement, i didn't get any boobs,,but it did give me a hairy chest which my wife had prayed for for many years,,,HA!
I kinda worried about the prostrate cancer thing since i had preveiously had a bad infection before going on the Testosterone, so what i did was go on SawPalmetto for a long time to help avoid getting another infection,,,NOW, i don't know if that helped,,but i never had another one and the doc said my prostrate gland was smaller than usual after taking the sawpalmetto for a couple of years....I feel that it really helped me, but thats just my opinion.
Another thing,,,i have never heard of being hooked on testosterone. I was on it for a few years but had to quit because i don't have ins anymore...I have been off of it now for about 3 yrs or so and i have been doing ok, YES,,my testosterone is low but i'm doing ok and when i can afford it i will go back on it again.
One thing that i did was that when on the testosterone i always had my PSA checked every 6 months and i kept track of each report in my records...
Hope this helps you in some way,,,,,,,,,,,,,kimo
Men are correct to have second thoughts about the use of testosterone because it can speed the growth of most prostrate cancer which is testosterone dependent. If I had significantly low testosterone levels however and I was symptomatic of low testosterone, I would consider it. Before I did so I would have the more expensive PSA test that measure free PSA and I would have a digital exam by a good urologist. As Kimo says, I would repeat the PSA test every 6 months an keep close check not just on the reading but on the movement of the reading.
There are some pretty well accepted things one can do with diet and supplements to reduce the likelihood of prostate cancer. Many of these preventative measures have been put under the scrutiny of clinical trials. If any are interested just PM me since it is pretty off topic for this area. If there is enough interest, I will post it under the "Off Topic" area.
Current standards of care mandate that an older man have his PSA checked prior to starting Testosterone replacement therapy. If the PSA exceeds a certain level, then it is contraindicated (I don't recall the excat level). Below that level, no matter how low the PSA was, it is prudent to measure it regularly.
Testosterone does NOT cause prostate cancer. However, if you have a very small prostate carcinoma already, it will accelerate growth f that cancer usually. That is why the PSA levels are so important. The myth that Testosterone triggers cancer is now fairly well disproved.
Tim
I'm willing to give the anti-glycants a try and I would like to know, from anyone of you who knows, if they will have a positive affect on my blood sugar and possibly ( ;D) my love handles.
Tim:
You are partially right about testosterone not causing prostate cancer. There have been some studies that show it does to a degree. However, once prostate cancer cells appear in one's body, they feed very rapidly on the testosterone.
Frequent PSA level tests are the main way of keeping tabs on the advancement of the cancer. It has now been recognized that men around the age of 60 or so should not have a PSA level above 4.0. The frequent checks of PSA will help monitor the increase or decrease of the numbers. Any radical upward spiral of PSA levels indicate serious problems with the cancer. I know first hand, have been through an aggressive form of prostate cancer, resulting in a serious radical retropubic prostatectomy in 1995.
Regards, Old Man
bodoo2u, I know of no possible effect on blood sugar levels from anti-glycants, except for Pyruvate. In error, I included Banaba on the list. It is NOT an anti-glycant. But it might very well also have the effect of lowering blood sugar, and retracting the love handles. Others on the list may actually be helpful to some small degree with the love handles, as they tend to re-partition energy from fat to energy. - George
I don't think anyone suggested testosterone
causes prostate cancer.
Quote from: Nemo on January 07, 2008, 10:45:55 PM
I have mixed feelings about getting on Testosterone replacement - I am excited by the prospect that it can boost my energy and sense of wellbeing, not to mention libido and erectile function, but I'm scared of what it can do to the prostate (speeding the growth of any cancer cells that may exist)...
Random postmortem studies do indicate that over 50% of males over 60 years old have pc cells upon microscopic examination. This means that anything that is known to speed this growth up is potentially a major concern. Generally acceptable PSA levels are
less than 4. If you jump from 1.5 to 3 however in a 12 month period, the PSA velocity alone dictates a much closer exam and follow-up. PSA doubling rate is everything regardless of the reading.
It is also now known that body weight affects PSA readings. Generally, people who are heavier will have lower PSA readings than people who are slender. Thus a PSA reading that would not be a concern for a slender person might well be a concern for a heavier person. And, as Hawk has noted, any unexpected CHANGES in PSA levels are a concern as well. AND PSA readings should always be double checked with a traditional exam. - George
I agree guys, if the Endo puts me on Testosterone Replacement, trust me, I'll be getting voluntarilly fingered and PSA'd every quarter (forget twice a year). I'll be watching it like a hawk, believe me.
Nemo
All,
I was reviewing forum remarks about forskolin when I came upon these two by George999:
From "Tim's charts", July 30, 2007
4) cGMP up regulators to (like Forskolin) to down regulate Collagen Synthesis
From "Elastin", August 12, 2007
5) Forskolin increases cAMP levels which means that forskolin with all of its potential benefits may not be good for elastin production.
George999, if you're out there (or anyone else with insight on this supplement), what is your current thinking about forskolin? Did you mean to say that forskolin increases cGMP or did you mean cAMP? I am a bit confused about this and about its benefits for Peyronie's. (While I'm at it, permit me to say, George999, that your posts are simply excellent, really instructive; thank you.)
-soiDisant
All - Sorry; it would appear that I have forgotten how to post a NEW topic. Perhaps one of the admins could move this to a new topic. Again, apologies.
Post moved from the traction topic. Hawk
Quote from: soiDisant on January 09, 2008, 04:11:06 PM
All,
I was reviewing forum remarks about forskolin when I came upon these two by George999:
From "Tim's charts", July 30, 2007
4) cGMP up regulators to (like Forskolin) to down regulate Collagen Synthesis
From "Elastin", August 12, 2007
5) Forskolin increases cAMP levels which means that forskolin with all of its potential benefits may not be good for elastin production.
George999, if you're out there (or anyone else with insight on this supplement), what is your current thinking about forskolin? Did you mean to say that forskolin increases cGMP or did you mean cAMP?
Quote from: National Institute of Child Health and Human DevelopmentOn the other hand, forskolin, an activator of adenylyl cyclase, and IBMX, a nonselective inhibitor of phosphodiesterase, increased cAMP and cGMP production as well as PRL release in a time- and concentration-dependent manner.
http://eclipse.nichd.nih.gov/nichd/annualreport/2004/errb/scs.htm (http://eclipse.nichd.nih.gov/nichd/annualreport/2004/errb/scs.htm)
Forskolin
appears to increase
both cGMP and cAMP, although different studies often come to different conclusions as to
why these levels get upregulated.
Quote from: soiDisant on January 09, 2008, 04:11:06 PMI am a bit confused about this and about its benefits for Peyronie's.
And you are not alone! I often find myself somewhat confused as I try to follow the research as it pours forth. Many studies actually provide more questions than they do answers, but that is not necessarily a bad thing. Trying to follow these studies and make use of their findings is something like driving a car. You can't just aim in a straight direction and go to sleep until you arrive. There are always unexpected things happening in the roadway ahead and one is always having to make little corrections as a result. At this point I really don't know the deal one way or another about Forskolin. By the way, I, myself, am still taking it, but I may discontinue it as I finish my current supply, since I think I am on to things that may work better. I am convinced that Forskolin has been very useful to me in terms of my general health, but it is probably time to take a break and move on.
I am also not so sure that the subtle effects of Forskolin on either Collagen OR Elastin are beneficial. The need that I see is to knock out glycation which corrupts Collagen AND Elastin. Once that is accomplished, one would actually want to accelerate BOTH Collagen AND Elastin production in order to promote turnover, and, hopefully, the replacement of "bad" glycated (AGEed) Collagen with "good" non-glycated (normal) Collagen. This would point toward the potential of benefits from supplements such as Aloe Vera.
Quote from: soiDisant on January 09, 2008, 04:11:06 PM(While I'm at it, permit me to say, George999, that your posts are simply excellent, really instructive; thank you.)
Thanks for the encouragement! Its appreciated. - George
Quote from: soiDisant on January 09, 2008, 04:11:06 PM-soiDisant
All - Sorry; it would appear that I have forgotten how to post a NEW topic. Perhaps one of the admins could move this to a new topic. Again, apologies.
Post moved from the traction topic. Hawk
Hey guys,
My peyronie's is still a hot mess. I decided to fast today, trying something new. All the talk about glycation has me wondering about my diet of lots of fresh fruits. Should I back off the apples and cantelope because of the sugar? I know high glycemic will aggravate inflammation. Fruit is not exactly low glycemic. Maybe I should back off it to stop the inflammation.
Also I remember the first time I had peyronies I was in my late 20's. A very knowledgeable man at the healthfood store told me to supplement with "Cystine" because it is not destroyed in the gastrointestinal tract. It probably goes without saying I will be taking it soon to promote glutathione production. But back in my 20's my peyronies went away completely six months or so after it started.
Some things about the glycemic index might be surprising. Sweetness doesn't necessarily tell you a lot when it comes to whole food. For example:
Apple: Glycemic Index=28 Glycemic Load=4.1
Baked Potato: Glycemic Index=94 Glycemic Load=27.3
The Apple therefore ranks LOW on the Glycemic Index whereas the baked potato ranks HIGH. Also note that the spread in terms of Glycemic Load is even greater. Glycemic Load takes into account the amount of a particular food required to satisfy. Also compare:
Cantelope: Glycemic Index=65 Glycemic Load=4
French Bread: Glycemic Index=95 Glycemic Load=48
So one should be careful in reducing fruit intake in the diet. Another huge issue is that fruit tends to be nutrient dense, and that is a good thing when it comes to food. This causes it to be very satisfying and satiating. And there is at least one fruit, mangosteen, that ACTIVELY fights glycation.
So the big thing for me with fruit has been to take steps to reduce the effective Glycemic Load. This can be done by adding certain healthy "condiments" to your fresh fruit. A little bit of whey protein mixed in will make it more filling as will some added fruit fiber. Cinnamon will buffer the effects of the fructose content as will chia seed. And adding a bit of healthy cerreal and nuts such as walnuts or pecans will make it more filling as well. But a number of studies have demonstrated that fruit is not the major culprit in elevating serum glucose and insulin levels, it is refined and processed foods that are the major problem in that regard. Even vegetables are worse offenders. For example:
Rice: Glycemic Index=99
Bread: Glycemic Index=97
Parsnip: Glycemic Index=97
Scones: Glycemic Index=92
Corn Flakes: Glycemic Index=92
On the other hand:
Cherries: Glycemic Index=22
Plum: Glycemic Index=24
Grapefuit: Glycemic Index=25
Canned Pear: Glycemic Index=25
Peach: Glycemic Index=28
Apricot: Glycemic Index=30
So in terms of fruit, the problem is more about what they add to it than the sugars it naturally contains. Raw fruit is usually not a problem in terms of Glycemic Index.
- George
Hi Everyone,
I am a new member to the forum; I hope this post is in the correct area, if not maybe someone could advise where it should be posted.
I am a UK resident and as I understand it, drugs that are available in the US or other parts of the world are not necessarily available here in the UK. Therefore my question is can anyone from the UK please make a recommendation of an oral treatment for the disease freely available over here.
Pleased to be amongst friends
Regards
ukk9
Hi UKK9,
I am also a sufferer from the U.K. I tried to get pentox from the NHS, however the doctors refused as they said that their guidlines state peyronies is incurable, they are unable to prescribe anything for it, even though I showed them many studies stating its positive benefits. To be honest, you need to take responsibilty for your own treatment; this is possible. I have been able to aquire pentox on the net. Try a Spanish company called Goldpharma, I found them to be cheap and quick with delivery, you can purchase a generic version of pentox from them, it will be called something else but it will state that it is a generic form of pentox. I am almost a month into this treatment, no positive signs yet, but from reading the forum it looks as if nine months to a year is the minimum time to see an effect. Also , there are myriad supplements that people take on this forum. I have been trying to follow Georges approach of supplementing anty-glycants (bentofamine, Acetyl - Lcarnitine, L-carnosine) as well as a full spectrum vit E and L-arginine. Search for supplements on the web, I have found that American companies generally provide supplements for the same price in dollars as we pay in pounds, and even with the cost of shpping the strength of the pound means they are pretty cheap. I wish you the best of luck with your treatment regime.
I thought that under NHS guidelines, that a doctor could prescribe something, but it would not be covered financially. That way, couldn't he prescribe Pentox (if he knew that it worked and agreed) and then the patient could get it paying out of pocket?
Tim
Hi Duben
Thanks for your prompt reply. I have taken a look at the company you suggested but I must admit that I am completely baffled by the variety of products shown when the word Pentox is searched for on their web site. Have you any suggestions concerning particuar products/quantities?
As an aside, has anyone heard of a product called vasolator, by coincidence a leaflet for this product came tucked inside a windows advisory update I subscribe to - its to much to hope that its fate and going to be something worth trying I suppose.
regards
ukk9
Tim, that's just what they told me. I don'tif you'd get a different answer from a different doc, to be honest I just wanted to stress the point that it may be faster to aquire what you8 want yourself, rather tahn wait for an appointment when you are unsure they'll do anything. By all means, pursue both courses of action concurrently, cover your bases, but you're not going to get better doing nothing.
UKK9,
the dose for pentox is 1.2 g a day, I take two of the 600mg HEMOVAS from goldpharma a day, but I have no idea what the difference between all the generic version they sell is, if there is any. Pot luck I guess! All the best, Duben
Quote from: Duben on January 13, 2008, 09:01:18 AM
I have been able to aquire pentox on the net. Try a Spanish company called Goldpharma, I found them to be cheap and quick with delivery, you can purchase a generic version of pentox from them, it will be called something else but it will state that it is a generic form of pentox.
Gentlemen,
Pentoxifylline is the generic form of a prescription drug called Trental. You have mentioned you are getting a generic form of pentoxifylline. I'm wondering how is it possible to get a generic of a generic? It's possible you are not getting any form of Trental.
In light of the previous post, can anyone advise as to exactly what medication is worth purchasing? As someone who reallu doesn't understand anything about how treatments are named etc and with there being generic versions, real names and it appears generic versions of generic versions the whole thing is becoming even more confusing.
Any advice would be most welcome (sorry if I appear a bit of a dim wit - its my age !!!)
ukk9
Let me help the self-labeled "dimwits"... ;)
When a drug is developed, it has a name. That name may be based on it's chemical structure, or it may be based on something else. An example would be a drug called "SQ2948". IT was developed by Squibb (hence the "SQ") and it was the 2,948th drug developed (perhaps that year?... that decade? - I don't know), that was developed for the purposes of fighting heart attacks. It never made it to production because it was not suitable (though I used it in the laboratory to test another hypothesis on pigs).
Another drug I have used is called "FK506" (called Fujimicin in Japan) and it is used to prevent rejection in lung transplant victims, er, I mean patients. It moved out of the experimental stage, when it was used only experimentally, and it was given a different name of "Tacrolimus".
FK506, or Tacrolimus is now called by the "Brand Name" of "Pro-Graf".
A brand name is given to a drug when it becomes marketable, by the company that holds the patent. When the drug goes off patent, other companies can market the drug, but they have to either make up their own name, or use the original drug/chemical name.
For instance, the drug Diphenhydramine is not well known. But it is still known (even though it is no longer covered by patent law) as Benedryl in the US (and as Dimedrol outside the US).
So, for a drug to be available as a "generic", it must be done with it's patent protetion, so that other companies can manufacture their own versions.
The key thing to look for is the "active ingredient(s)" of a drug. The active indregient in Trental is Pentoxifylline. It may also be marketed as Pentoxifylline; it may also be marketed as someting else, as long as the active ingredient is Pentoxifylline.
A "Generic" drug is simply a drug made by someone other than the original patent holder. It might be named something completely different, though many use catchy names that allow the generic to cash in on the name brand recognition of the original patented drug (ie a version of diphenhydramine is marketed as Benylin, which sounds a lot like Benadryl).
Hope that clears it up a bit.
Tim
Wikipedia has more on it: http://en.wikipedia.org/wiki/Generic_drug
Hi George again.
OK - progress here. I have made the change to more fruit, and am really glad I have done that. The fruit salad idea was great and it gives me a way to eat fruit without thinking "But I don't feel like eating an apple right now". I am adding some crunchy cereal - thanks for the tip about Food for Life - great products.
The problem I have is I tried introducing some powdered fiber to it and it became a glutinous mess, that was unpalatable in texture and immediately lost the flavor of the fruits, now being dominated by the powder that I added (which is the store brand for fiber from Whole Foods).
Any tips on what kind of fiber to add to the fruit in the morning? I am now starting to work on lunch time as well ::)
Tim
Tim, as with everything and especially diet which covers many subtle likes and dislikes, each person has to find what works for them by applying the known principles.
I find that eating 5-7 servings of fruit and vegetables a day along with all whole grains gives all the fiber needed. Oatmeal is high in fiber, berries are quite high in fiber. Sprinkling ground flax gives added fiber and omega 3.
My fruit shake or smoothie that I have posted, will give most people more fiber than they can comfortably adjust to on the initial 2 or 3 days. It has 4 servings of fruit in just that smoothie alone. I feel that the need to add fiber supplements is a sign that our base diet may be flawed.
Tim, as with everything and especially diet which covers many subtle likes and dislikes, each person has to find what works for them by applying the known principles.
I find that eating 5-7 servings of fruit and vegetables a day along with all whole grains gives all the fiber needed. Oatmeal is high in fiber, berries are quite high in fiber. Sprinkling ground flax gives added fiber and omega 3.
My fruit shake or smoothie that I have posted, will give most people more fiber than they can comfortably adjust to on the initial 2 or 3 days. It has 4 servings of fruit in just that smoothie alone. I feel that the need to add fiber supplements is a sign that our base diet may be flawed.
Tim, I keep a number of different types of fiber on hand. I prefer soluble fiber. For fruits I use fruit fiber. The trick is to use just enough to thicken it nicely without having it turn into an unpalatable gruel. I use both Apple Fiber and Grapefruit fiber. These are a really fine fiber that mixes thoroughly with the juice from the fruit mix and helps to bind the sugars as well as adding extra fiber to my diet. For the vegetables, I use Corn fiber and Flax meal. These add an appropriate texture and flavoring to my veggies. - George
Thanks Hawk and George,
I agree that adding fiber may indicate that my base diet is not right - but I have trouble adding as much fruit and veggies as I should to my daily diet. I am working on it.
But I think that for me, increasing my fiber intake may yield some specific benefits in terms of my HDL/LDL ratios and I am therefore trying to push the fiber to higher than usual - and I am already below "usual".
George, I will start googling - but if you have any preferred brands of fiber please let me know. I promise I won't accuse you of being a shill for some fiber dealer.
Tim
Personally, I use ZTrim for the corn fiber and the NOW brands for the Apple and Grapefruit at this point. I also use Chia for both fruit and veggies. I use about a tablespoon of each of these. If I revealed exactly how much total fiber I am consuming, many on this forum would quickly conclude that I am ODing to the extreme. But soluble fruit and vegetable fiber has a fairly low level of toxicity and it achieves what I want it to do in spades. Seriously.
1) The right fiber in the right amount actually can enhance the palatability of the food.
2) It lowers blood sugar directly by slowing absorption of dietary sugars.
3) It lowers serum cholesterol levels directly.
4) It actually enhances uptake of many nutrients by releasing them slowly as the food passes through the digestive tract.
5) It enhances bowel regularity and thus enhances the health of the gastrointestinal tract.
6) By directly inhibiting glucose spikes, it results in weight loss, which further lowers blood sugar and cholesterol levels AND blood pressure levels.
I experience totally no side effects from lots of fiber other than the cost of paying for it. But it certainly reduces the amount of food I eat, since it is very filling, and so those costs really get canceled out.
I would never recommend this amount of fiber for my children because they don't need it. A healthy diet in and of itself would supply them with sufficient fiber. But when a person has an unhealthy diet for a long time that has insufficient fiber among other things, it takes an excessive amount of fiber to reverse the damage caused by an unhealthy diet in the first place. The whole pathway that leads up to Metabolic Syndrome is chock full of feed back loops. It takes MAJOR intervention to break those loops and restore a normal metabolism. I'm not there yet, but I am on the way and I am reaping the benefits of taking that course of action. Anyone who starts life with a healthy diet and continues through life with a healthy diet will reach an adult weight at around 18-20 years of age AND maintain that weight for the rest of their life. When anyone has a tendency to progressively gain weight as they advance in age, that is a sign that something is wrong with their diet, and simply fixing the diet will not stop the weight gain because their metabolism has already been damaged. And it takes prolonged and determined action to deal with that imbalance. - George
FLASH! -- Another Study Links Western Diet to Heart, Health Risks http://www.healthday.com/Article.asp?AID=611897 (http://www.healthday.com/Article.asp?AID=611897)
Quote from: Tim468 on January 22, 2008, 02:21:00 PM
...I think that for me, increasing my fiber intake may yield some specific benefits in terms of my HDL/LDL ratios.
You probably know this but for the specific benefit you mention, you need to specifically monitor
soluble fiber.
Hawk, my diet is so American that I need to increase fiber period. Soluble too.
Tim
with all the talk of anti-glycants and low glycemic foods, insulin and insulin resistance, I took a second look at my diabetes. In addition to having peyronie's, I 've also got dupuytren's, and type 1 diabetes. anyways, I started taking 1000mg of cinnamon in the mornings with the rest of handfuls of pills and noticed it had a drastic effect on my sugar levels. that is, it drove them thru the floor. Curious of the mechanism behind it, I did a little googling and came across this passage:
http://www.deeperwants.com/cul1/homeworlds/journal/archives/003004.html
"The active ingredient in cinnamon turned out to be a water-soluble polyphenol compound called MHCP. In test tube experiments, MHCP mimics insulin, activates its receptor, and works synergistically with insulin in cells. To see if it would work in people, Alam Khan, who was a postdoctoral fellow in Anderson's lab, organized a study in Pakistan. Volunteers with Type 2 diabetes were given one, three or six grams of cinnamon powder a day, in capsules after meals. All responded within weeks, with blood sugar levels that were on average 20 per cent lower than a control group. Some even achieved normal blood sugar levels. Tellingly, blood sugar started creeping up again after the diabetics stopped taking cinnamon. The cinnamon has additional benefits. In the volunteers, it lowered blood levels of fats and "bad" cholesterol, which are also partly controlled by insulin. And in test tube experiments it neutralized free radicals, damaging chemicals which are elevated in diabetics.
Now I recall talk of free radicals and their effects on peyronie's but don't really recall the specifics, but this seemed like it might have some pertinence.
For any who might be interested, I have just a few days ago updated my anti-glycation supplement stack. I am now taking:
Carlson Aloe Vera Soft Gels - Protein Turnover Agonist
Benfotiamine Inc. Benfotiamine-V - AGE-Breaker (Vascular)
Jarrow Formulas Pyridoxall with Pyridoxamine - AGE-Breaker (Non-Vascular) *New Addition*
Jarrow Formulas CarnitAll 600 - Anti-Glycant *Instead of ALC*
Now Foods NAC - Anti-Glycant
Now Foods L-Carnisone - Anti-Glycant
Natural Factors Mangosteen Super Strength Extract - Anti-Glycant *New Addition*
Jarrow Formulas Ashwagandha - Possible Anti-Glycant
It is really too early to tell where this is going to take me, but I will try to keep you all up to date. In a couple of weeks or so, I also plan to add:
Now Foods Pyruvate Extra Strength - Anti-Glycant
All of this is in addition to healthy diet and regular exercise and should be seen in that context. I am also taking other supplements that target my blood sugar levels and appetite, thus indirectly attacking Glycation PLUS assorted Anti-Oxidants to inhibit the negative effects of Glycation.
- George
PS - I just have to note that Jon's post on Cinnamon below is REALLY insightful in many ways. It is really valuable to have it documented on this site. My only concern about it in Jon's case is the Type 1 Diabetes issue. People with Type 2 Diabetes have some "auto" control over their blood sugar levels which gives more allowance for safe use of substances like Cinnamon. But people with Type 1 Diabetes have nearly zero auto control over their sugar levels and thus have to be VERY careful with ANYTHING that affects blood sugar levels in EITHER direction. I am sure that Jon knows all of this, but I think it should be pointed out since not all readers might be aware of it. Also interesting about Type 1 Diabetes is the fact that, contrary to long held belief, it is now known that at least most Type 1 Diabetics DO produce SOME insulin. Also now known, is the fact that Type 1 Diabetics are known to exhibit symptoms of Type 2 Diabetes (Insulin Resistance) in addition to the classic Pancreatic issues.
Further reading on spices:
Herb and spice extracts inhibit protein glycation: http://www.fasebj.org/cgi/content/meeting_abstract/21/6/A1088 (http://www.fasebj.org/cgi/content/meeting_abstract/21/6/A1088)
Note that the above is an "in vitro" study and does not prove the effect carries over to real life. Also note that it also relates specifically to albumin and that specific anti-glycants tend to vary widely in effectiveness depending on what type of protein is involved and what part of the body is affected.
In reply to george999 I think that too much zinc can reduce copper levels and copper is important to connective tissue. I have heard that even 25 mg of zinc can be too much. I take 15mg of zinc and 1 mg copper both chelated. I had initially a high pulse and bp 88 heart rate and 140/90 bp when I experienced impotency with peyronnies and stopped saw palmetto with some relief and much more relief when I lowered the zinc. see saw palmetto side effects on a search engine.
Post moved from the "Newly Diagnosed" read-only board - Hawk
jjcall, You are exactly right about the Zinc. Zinc can be a very good supplement to take, BUT too much of it can zonk your immune system pretty badly as well. I had a nasty experience with it. At this point I am taking it only once a week (plus a little more in a once a week Multi). Additionally, the Zinc supplement I am currently uses is balanced with Copper. Interesting aside on the Saw Palmetto, but I suspect the Zinc was what was really messing you up. Another factor with Zinc is that as with all supplements, some formulations may be better absorbed than others. At the same time there is a competitive psychology that drives each vendor to try to one up the others in terms of potency. Sometimes that may NOT be a good thing. - George
Solgar sells (gPLC) Is the glycine bad for peyronies patients?
Should I try and find PLC by itself?
I would appreciate any suggestions on what is a good brand of PLC and where to
purchase it.
Thanks guys, the supplements seem to be helping.
jj
I have been taking Saw Palmetto(SP) for over 10 years. After my second TURP about 10 years ago I started searching for something other than the meds that the Dr. put me on.
Prostate meds effected my ED, made me sluggish and interfeered with blood pressure meds.
Before I started SP my wife made me talk to my Uro before taking it. I asked the Uro and he said "Jack I take it. It works great just get a good brand like GNC."
I went to GNC and bought a bottle of 160mg pills. Stopped the prescription meds and within 6 weeks I had no more BPH.
I get a DRE every six months because I am on Testesterone and a PSA. PSA steady at 1.2 and Dr. remarks how well my prostate feels, and normal size.
The only side effect I have from SP is that I no longer have BPH and have a healthy prostate.
Jackp
Look it up on Wikipedia. Personally I see nothing wrong with it in terms of Peyronies. Glycine is a fairly benign non-essential amino acid that is ubiquitous in the body. And when you take GPLC (no other form of PLC seems to be commercially available), your body splits it into Glycine and PLC. At that point the Glycine is only so much more Glycine and the PLC goes on to do its job. And actually, Glycine is a major component of Collagen. In the case of Peyronies, I believe we want more Collagen turnover. It all seems beneficial to me. That is why I am taking it. But I am not a doctor or a pharmacist, so please don't take my word as authoritative. - George
My eye doctor today gave me a script for doxycycline for cronic eye lid inflamation. I want to know how doxycycline will effect my peyronies so I googled it and found this article. It says docycline
can inhibit MMP activity which good for treating peyronies. What I'm not sure about is the action of suppressing collagenase activity. Is that harmful or helpful for treating peyronies?
Here is the content of the paper and the link is at the bottom.
Thanks guys.
-jxyz
Nonantimicrobial Properties of Tetracyclines
Much of the early research investigating the nonantimicrobial potential of the tetracyclines was done in the treatment of adult periodontitis.[53] The tissue and bone degrading characteristics of periodontitis involve a prolonged and excessive host inflammatory response to the presence of bacteria, which promotes the activity of matrix-degrading metalloproteinases (MMPs), as well as alterations in the metabolism of bone. MMPs are proteolytic enzymes produced by infiltrating inflammatory cells and resident connective tissue cells. These enzymes induce the excessive degradation of collagen, the primary structural component of the periodontal matrix. In combination with alterations in the relative capability of the tissues to form new bone, particularly in patients with certain specific risk factors and underlying systemic dis-ease processes, this ultimately leads to the net loss of connective tissue attachment and supporting alveolar bone, the latter being the signature event of periodontitis.[54] In vivo and in vitro studies in humans and animals found that tetracyclines can independently inhibit MMP activity and stimulate new bone formation, thereby preventing connective tissue breakdown and contributing to the prevention of net alveolar bone loss.[53]
Tetracyclines inhibit connective tissue breakdown by several mechanisms, directly and indirectly, depending on the particular status of the tissues involved and the stage of disease progression. They directly inhibit active MMPs, such as MMP-8, MMP-9, and MMP-13, as well as the oxidative activation of pro-MMPs. They disrupt MMP activation by promoting excessive proteolysis of pro-MMPs into enzymatically inactive fragments. This inhibition of MMPs protects -1 proteinase inhibitor (-1-PI), the major endogenous inhibitor of serine proteinases, and another class of tissue destructive enzymes. Protection of -1-PI indirectly decreases the tissue activity of serine proteinases, and protects the endogenous levels of the naturally occurring MMP inhibitors known as the Tissue Inhibitors of Matrix MetalloProteinases. Tetracyclines also down-regulate the expression of proinflammatory mediators, including cytokines such as interleukin-1 and TNF- , thereby inhibiting extracellular matrix breakdown.[53]
Use of Subantimicrobial Doses
Long-term therapy using standard antimicrobial doses of tetracyclines for chronic disorders such as periodontitis was not widely accepted due to the potential development of microbial resistance in the bacterial flora of the exposed population and other risks of side effects associated with long-term administration of tetracyclines. Studies suggested that these issues could be overcome by using tetracycline regimens that maintained blood levels below those purported to result in antimicrobial activity at the site of infection.[53,55]
Doxycycline was chosen over other tetracyclines for these studies because it was found to be the most potent inhibitor of MMP activity amongst the commercially available tetracyclines, and the best tolerated from the perspective of long-term administration.[56] Extensive preclinical and early-stage clinical work established a dosing regimen (20 mg twice daily) which was effective at down-regulating MMP activity and a variety of proinflammatory cytokines induced by infecting bacteria without producing a detectable effect on the microflora (e.g., decreased microbial counts).[53,57,58] The success of these initial investigations led to longer-term, randomized, placebo-controlled, multicenter, double-blind clinical trials in adult periodontitis (AP). One early study in a population with AP suggested that SD doxycycline 20 mg twice daily suppresses collagenase activity in the periodontal pocket.[58] The dose was low enough to avoid any impact on the oral microflora yet sufficient to inhibit host collagenase activity in gingival crevicular fluid by 40%-50%.[58]
Lack of Antimicrobial Effect of SD Doxycycline
Microbiological testing was an important part of the study designs for the pivotal trials to establish the safety and efficacy of SD doxycycline (20 mg twice daily) for AP. This dosing regimen provided the maximum dose that achieved plasma concentrations consistently well below those required for an antimicrobial effect and resulted in maximum steady state plasma concentrations of 0.79 µg/mL after approximately 1.5 hours.[36]
One 9-month study compared SD doxycycline to placebo, evaluating the antimicrobial effect on subgingival microflora. There were no differences between or within the 2 treatment groups detected in any of the microbiologic parameters, with the exception of a decrease in the proportion of spirochetes (p <0.05).[59] Clinical trials for SD doxycycline in periodontitis demonstrated no effect on total anaerobic or facultative bacteria in plaque samples from patients given SD doxycycline for 9-18 months.[36] In long-term studies of SD doxycycline (open-label, blinded, controlled studies), MIC levels for organisms remained constant among all treatment groups compared with baseline at 18 and 24 months. There were no statistically significant differences in the proportion of doxycycline-resistant isolates among treatment groups and no evidence of multi-antimicrobial resistance or cross-resistance at any time point.[60]
Long-term clinical studies in patients receiving SD doxycycline for up to 18 months confirmed the clinical efficacy in treating AP with no evidence of effects on the microflora of the oral cavity or GI tracts.[
link for above:http://www.medscape.com/viewarticle/458343_8 (http://www.medscape.com/viewarticle/458343_8)
JXYZ, My former eye Dr. prescribed Doxycycline in 07 for chronic eyelid inflammation. Since taking it, I have read more than 1 research paper saying that it inhibits collagenase. I am hesitant to take Doxycycline again especially long term use.
Collagenase is, in fact, currently being studied as a promising treatment for Peyronies. Certainly suppressing the body's own Collagenase would be bad for Peyronies in the long run. We would rather want to take things that would promote Collagenase. But when it comes to an antibiotic treatment, those usually are taken for a few weeks at the most. Taking it for that brief a period would likely have little or no effect on Peyronies. But it would certainly not benefit you. So I would go ahead and take the antibiotic. Just know that it is not going to cure your Peyronies. - George
Question on Pentox.
I'm meeting with my Uro next week as, after 7 years of "stability" I've noticed what may be a new small indentation. I don't want to mess around, and I've been reading a lot about Pentox, so I'm going to ask my Uro for a prescription (he said he was open to it once before.)
My question is this though, from what I read, Pentox is essentially a blood thinner ... is it reasonable to think that the reason Argenine/Viaga/Pentox are used in combination is because a) Arginine boosts Nitric Oxide production; b) Viagra kills the enzyme that blocks NO from the penis; and c) Pentox thins the blood, thus improving the NO rich blood's flow into the penis?
I just want to make sure I'm on the right track with this.
Thanks,
Nemo
Nemo, You are pretty close as to Arginine and Viagra. But when it comes to Pentox, not so fast. It could probably be said that no one really understands fully where Pentox's therapeutic effect on Peyronies originates. That is, in part, due to the complex pharmacology of Pentox.
Pentox is known to 1) "thin" the blood by making red corpuscles more flexable, thus allowing them to deliver oxygen to damaged capillaries, 2) have a powerful anti-inflammatory effect, 3) inhibit TGF-beta-1 which has been identified as a bad guy when it comes to Peyronies, 4) inhibit Glycation which is also known to be a bad guy in terms of Peyronies. And the list could go on. But basically, Pentox is known as a drug that seems to be effective against multiple types of fibrosis. But don't get your hopes up too high. It takes a long time to work and it is NOT a silver bullet. But it is one of only two substances that I know of that have any amount of actual research data supporting their use. - George
Well, that all sounds good. I'm definitely going to give it a try ... thanks, George.
Nemo
Has anyone tried "Roaring Tiger" that comes with the Fastsize device? Each serving (2 pills) has a gram of L-Arginine and a blend that includes Horny Goat Weed. Two servings per day would be double the daily L-Arginine recommended by some.
I've been on the Roaring Tiger too along with the Fastsize. I haven't been as consistent with it, but I take it in place of the Arginine that I have been taking. So far no side effects. How about you?
jjm
I'm a little conservative on meds. I started today on 1/2 the dose. I'm taking one pill twice a day. If I notice nothing, positive or negative, I'll up it to 2 pills twice a day.
Definition of collagenase in Wikipedia: Collagenases are enzymes that break the peptide bonds in collagen.
They assist in destroying extracellular structures in pathogenesis of bacteria such as Clostridium. They are an exotoxin (a virulence factor) and help to facilitate the spread of gas gangrene. They normally target the connective tissue in muscle cells and other body organs.[1]
Collagenase production can be induced during an immune response, by cytokines which stimulate cells such as fibroblasts and osteoblasts, and cause indirect tissue damage.
Says it can stimulate fibroblasts. That does not make collagenase sound like a good thing to me. Collagenase sounds very negative and destructive to me.
http://en.wikipedia.org/wiki/Collagenase (http://en.wikipedia.org/wiki/Collagenase)
Quote from: George999 on January 29, 2008, 12:08:28 PM
Collagenase is, in fact, currently being studied as a promising treatment for Peyronies. Certainly suppressing the body's own Collagenase would be bad for Peyronies in the long run. We would rather want to take things that would promote Collagenase. But when it comes to an antibiotic treatment, those usually are taken for a few weeks at the most. Taking it for that brief a period would likely have little or no effect on Peyronies. But it would certainly not benefit you. So I would go ahead and take the antibiotic. Just know that it is not going to cure your Peyronies. - George
jxyz, The Wikipedia entry does NOT say that Collagenase "simulate fibroblasts". It says that Cytokines (bad guys) stimulate fibroblasts and osteoblasts AND that this, in turn, induces Collagenase production. In fact, in the case of Peyronies Cytokines ARE stimulating fibroblasts and, unfortunately, not enough Collagenase is being produced to counter them. The purpose of Collagenase is to get rid of defective Glycated Collagen and cause it to be "turned over", that is replaced by new normal Collagen. Collagen turnover is a normal and necessary part of body metabolism. The main feature of Peyronies is the accumulation of abnormal Collagen which is stiff and inflexible. - George
NOTE: Studies of Collagenase as a treatment for Peyronies are ongoing - http://www.biospecifics.com/collagenase_uses.html (http://www.biospecifics.com/collagenase_uses.html)
Quote from: jxyz on January 30, 2008, 12:56:10 AM
Definition of collagenase in Wikipedia: Collagenases are enzymes that break the peptide bonds in collagen.
They assist in destroying extracellular structures in pathogenesis of bacteria such as Clostridium. They are an exotoxin (a virulence factor) and help to facilitate the spread of gas gangrene. They normally target the connective tissue in muscle cells and other body organs.[1]
Collagenase production can be induced during an immune response, by cytokines which stimulate cells such as fibroblasts and osteoblasts, and cause indirect tissue damage.
Says it can stimulate fibroblasts. That does not make collagenase sound like a good thing to me. Collagenase sounds very negative and destructive to me.
http://en.wikipedia.org/wiki/Collagenase (http://en.wikipedia.org/wiki/Collagenase)
Quote from: George999 on January 29, 2008, 12:08:28 PM
Collagenase is, in fact, currently being studied as a promising treatment for Peyronies. Certainly suppressing the body's own Collagenase would be bad for Peyronies in the long run. We would rather want to take things that would promote Collagenase. But when it comes to an antibiotic treatment, those usually are taken for a few weeks at the most. Taking it for that brief a period would likely have little or no effect on Peyronies. But it would certainly not benefit you. So I would go ahead and take the antibiotic. Just know that it is not going to cure your Peyronies. - George
OK guys, I'm worried I'm in an inflamatory stage. Been "stable" for 7 years, but recently noticed what might be a small dent on the underside, and for the last couple days have had a vague, faint sort of soreness on the rear top right side. Of course, checking it every five minutes for any sign of plaque, etc, is keeping me obsessed, but the light soreness feeling is there. Could be from lots of usage over the weekend, I don't know, but I'm not taking any chances.
I'm seeing my Uro Monday and am requesting Pentox. Right now, I'm taking 800mg Advil 3 times a day, 400IU Vit E 3 times a day. Should I be taking the Arginine too right now?
Any other advice? Please keep your fingers crossed for me. I'll report back if things progress, or hopefully resolve.
Nemo
Nemo,
I would throw in ALC 2000 - 3000 mg. It is a good supplement for general health and certainly has no known downside. It has some small questionable studies showing benefit. I have anecdotal evidence that I could turn the minimal pain I experienced with Peyronies Disease on and off by using ALC.
Good luck and keep us posted.
Thanks, Hawk - how about the Arginine? I read some posts way back in one of the threads where some worried that Arginine during the active stage might cause inflamation ... however, if people are recomending the PAV cocktail, I'm guessing that's not a widely held belief. What do you think?
Nemo,
I don't have any real basis to make a sound recommendation one way or the other.
My logic sees a fork in road in regard to your question about arginine and inflammation and I am just not sure which road is best.
I always respect a person's opinion more when I sometimes hear them admit they don't know something! Hey, I appreciate the counsel.
During states of active inflammation, arginine may shunt towards the production of collagen, whereas when one is not inflamed, it is shunted towards the production of nitric oxide (NO). One could theoretically deal with that by taking something to prevent the functioning of "arginase" (which is what shunts arinine towards proline and collagen) by taking "Norvaline". The only source of that (other than pure USP grade) is in VasoFlow, which has Norvaline mixed in already.
If I was going to add arginine, I would do it that way.
Tim
My concern about possible inflammation would be in taking action to stop it. Certainly I would second Tim's advice about Arginine. But the reality is this, taking Arginine or not taking Arginine is not likely to affect the inflammation a lot in either direction. Hawk's advice about ALC is right on the mark. My experience tells me that anti-Glycants like ALC DO lessen inflammation and prevent the whole Peyronies cascade that follows. In this case, I would also recommend Mangosteen. You can get it either as juice or in supplement form. I have used both forms and found them dynamic in their ability to control inflammation. AND certainly Pentox fits in this category as well. If your doc is willing to give you a prescription, I would certainly take advantage of that. I have to admit that I am not too impressed with Advil in this case since I don't see it really striking at the root of the problem. - George
My Arginine is San Vasoflow, so I guess I'll continue to use that ... and the ACL ... and the Pentox, starting Monday, hopefully.
Thanks, guys.
Nemo
Advil is likely to be of use in acute injuries, which can happen during sexual escapades. If we have an acute injury (ie a sharp painful bend) the advil can reduce the white cell mediated inflammatory steps that can set off a more complicated cascade. Chronic inflammatory states are more dependent on our "redox" state and what we eat and do. For that, George is on the right track. The problem with all of this is that we do not have easily measurable endpoints to measure to see if we are doing a good job. How do we tell if our overall level of inflammation is better? If we have hypertension, we have the BP. If we have arthritis, we have how it feels. If we have CF, we have how we breathe and lung function tests.
With Peyronie's, we have stability (ie going nowhere) or instability (ie getting worse). Pretty hard to measure "better" when the most many of us are getting is "not worse".
In that vein, PLC and ALC did not help me (I got worse while doing both in high doses). In fact, the only thing that has helped me at all is iontophoresis of Verapamil after an acute injury and my penis took a bend to the left within two days. I treated it every day and within a week, it has resolved (and restraightened). Of course, what I do not know is what would have happened if I had not done that, but had simply relaxed and done nothing.
Of course, the VED has helped, e as I have found that ignoring it for a period of time leads to rapid worsening, which is unfortunately not easily regained.
Tim
Tim, would you recomend VED usage while I think I may be in the inflamatory stage to keep things stretching and filling with blood, or should I completely shut of all "activity" in hopes of reducing inflamation?
Tim, I think you are right on the mark with this aspect. A lot of this IS really flying blind because, while we see the end effects, we have no way to accurately measure what is going on beneath the surface. I take something and I get better. But would I have gotten better anyway? Was it just a coincidence? On the other hand, I take something and I get worse. But would have it have happened that way anyway? On the other hand, perhaps there are things that "make it better", yet actually make it worse in the long run, or perhaps the mirror image of that could be true as well. Without long term double blind studies there is simply no way to know. So at this point I have abandoned the whole sensory method and am pursuing instead a theoretical approach. But the risk there, of course, is that this theory could be wrong or it could be just slightly flawed and still fail me. In any case, at this point I do continue to perceive gradual improvement. Or, more likely I suppose, I am just gradually adjusting to my "disability". - George
Nemo,
This is just my opinion, but I absolutely would stretch with the VED while in an acute phase. I would go easy, but I now always go easy with it. By that I mean not too high or too prolonged of pressures. Like many trying the VED, I have created small petechiae (small tiny pinpoint blood blisters), and acute swelling of areas of the penis (particularly the soft surface skin nearer to the head). The edema or petechiae are from too high or long I have found. I back off if it hurts, but I persist and I always work with wet heat (ie in the tub).
Just my two cents worth.
Tim
Tim and other VED users:
Tim, you are 100% right about the amount of vacuum pressure exerted when using the VED for therapy. I have learned from trial and error over the past 13 plus years that overpumping only leads to serious problems. Slower and lower pressure pumping over a longer period of time produces much better results. If one uses wet or dry heat before the VED exercise session, more caution should be exercised since the heat causes the tissue to be more pliable and can stretch further and cause more trauma.
It has been stated by me and others many times that extreme caution should be exercised when using the VED for Peyronies Disease or even for ED when going for full sex erections. Thus, be careful in how you use the VED or traction devices for that matter.
So, bottom line, one must use real common sense in VED therapy and if pain or discomfort is felt, back off and use less pressure, etc.
Old Man
Hi all, new here. I've been dealing with Peyronies for about a year and a half. I suspect mine was brought on by 6 weeks of radiation aimed at my groin for rectal cancer.
I did some digging into past posts but haven't found much on the subject of Neprinol. Has anyone had particularly good or bad experiences with this? I can't believe there isn't some sort of worthwhile treatment for this.
Thanks,
Mark
I used Neprinol for a short time before I had to give it up because of my soy allergy. Using it can get expensive if you follow their recommended dosage.
Personally, I really like Neprinol. I have been using it for probably over a year now. But I have seen no convincing independent research that shows it to be effective against Peyronies. Additionally, I simply refuse to pay the amount that it would cost for the "recommended" dose WITHOUT such a study. ADDITIONALLY, I have not noted ANY effect, positive or negative, in regard to my Peyronies. So I am taking one a day until the supply runs out. Since I have found other supps that provide more bang for the buck in my opinion (with a tiny amount of independent research to back them up), I will not be ordering more Neprinol. One thing you DO need to watch out for with Neprinol is to NOT get it in your lungs. This can happen by taking it and then having acid reflux. The Neprinol components in the reflux can then get down into the lungs. This can be very serious and can result in severe pneumonia. This is, of course, extremely rare. But everyone using Neprinol, especially in large dosages, should be aware of it. - George
George,
My personal view of this product is somewhere between disregard and contempt. They market it with at least the implication if not the bold statement that is treats Peyronies Disease. This is greed and preying on patients in my view. Not only is there no clinical data to support such a claim but there is not even a logical theory of how it would help Peyronies Disease. Add to this the price they charge, and then add my contempt for proprietary formulas, and you have my view. I agree that money is better spent (on almost anything including a vacation).
While I have never taken Neprinol I have taken Wobenzyme and Fibrozyme at "therapeutic doses". Not only did they have no impact on my Peyronies Disease but they had no impact on any of the other wondrous health benefits they claim to provide.
George, while I greatly respect your views in general. I think a "therapeutic dose" of a substance is often required to gain ANY benefit. While more is not better, enough is often a must. Taking a fraction of the therapeutic dose often results in absolutely no benefit. This is true even when the substance is very effective at therapeutic levels.
PS: Markinalexva, welcome to the forum. We wish you luck.
Hawk, thanks for making me realize that I left out an important point on the Neprinol issue. I went back and modified my post to make it clear that I would IN NO way endorse the use of Neprinol to treat Peyronies. I DO think it is an interesting supplement. But I don't think it will do anything for Peyronies AND I don't have a very high regard for its purveyor, Arthur Andrew. By the way, for those of you who don't know, I believe that Neprinol is actually made in India and distributed in the US by Arthur Andrew under their Neprinol label. Additionally, other "enzyme" type supplements that are available at a much more affordable price contain much the same ingredients as Neprinol. The manufacturer of Wobenzyme and Fibrozyme in fact "wrote the book" on these enzymes, but they aren't very well known because they aren't given to brash and irresponsible claims like Arthur Andrew. - George
Hawk & George,
Thanks so much for your feedback. I will definitely stay away from Neprinol. I suffer from acid reflux so I could see a real problem there in addition to the fact that it sounds like it's not effective in treating Peryonies.
So, is there anything that seems to be universally recommended for treating Peyronies?
Mark
As mentioned elsewhere, I'm seeing my Uro tomorrow as I think I may be in the early stages of an inflammation (no bend yet). I'm taking ALC, VitE, L-Arg, Advil.
I'm going to ask the Uro for a prescrip for Pentox but I'm also considering asking for Potaba. Anyone taken both?
Nemo
Nemo,
I have taken Potaba a long time ago (a few years ago.) I took it for about 8-9 months. 24 pills a day divided in 6 pills every 6 hours. I had to dillute them with water and take them after food or it would give me bad stomach pain. It may have slowed down the disease at that time.
Right now I am taking Pentox and been on it for 9 months with no apparent benefits yet. It is much easier to take 2 pills twice a day with no upset stomach.
I dont know if you can take them together that would be something your Dr. can advice you on although I suspect most Dr's will tell you no you should not take them together.
Nemo, i have been reading your posts too and it seem to me like you have a mild case of Peyronie. From your posts, you say can function well so I would echo Tim and others on just taking it easy and relaxing.
Good luck,
Pal
All,
I need to make a correction here. I take Pentox 1 pill twice a day NOT 2 pills twice a day.
Sorry,
Pal
Pal-31, thanks.
The Peyronie's I had 7 years ago left me with a little distal flacidity that doesn't really impair me. What I'm scared of right now is that I've got something going on near the base that, if it develops into full blown scarring, etc., could shut me down. Sadly, all you can do is wait to see what happens - that's the really hard part, I guess.
Nemo
OK guys, I went to the Uro this morning and told him of the weird feeling I've got on the side, that I'm worried is a Peyronie's storm brewing. He couldn't detect anything by feel (nor can I) and said it could be other things causing a sensation other than Peyronie's. Of course, I realize that, but that doesn't stop me from worrying. Maybe I strained it ... I can only pray that's all it is.
As to the Pentox ... I pretty much had to talk him into it. He'd heard of it but seemed to think it was unorthodox and not going to help. When I mentioned Dr. Leu and Levine and the PAV cocktail, he was a little more receptive because he knew of them, but still pessimistic. I asked him to please let me try and he said, "Sure, we can try, but I want to use a low dose until we see if you have any problems - it is a blood thinnner." He prescribed 1 400mg extended release per day (as opposed to 400mg x 3). It's not exactly what I was hoping for, but I told him I appreciated his willingness to work with me on this.
He also suggested continued VED usage (he is a believer in the VED for Peyronie's) and mentioned Colchicine, Potaba, and TV cream in passing, but I told him I'd used TV back in '02 and didn't really think it did much. Basically, he's familiar with many of the traditional things but a little suspicious of the new stuff like Pentox. But, I appreciate that he's got a fairly open mind to try it. When I told him I was also using ALC and L-Arg, he said, "well, it's not going to hurt you, but I just don't think it's going to affect Peyronie's."
So, for now, it's Vit E (400iu x 3); ALC (1G x 3); L-Arg (1G x 3); Pentox (400mg x 1). I'm keeping my fingers crossed and hoping this damn sensation will go away so I can stop obsessing about it. I'll keep you posted.
Nemo
Nemo, While taking Vitamin E along with Pentox is not a problem, you need to be aware that they are both considered "blood thinners", that is both tend to exacerbate bleeding, although via different mechanisms. For this reason your doctor needs to BE AWARE that you are taking 1200 IU of Vitamin E along with the Pentox. Also, at least some of the blood thinning effect of Vitamin E can be countered by taking some Vitamin K or at least getting a lot of the kinds of food that are loaded with Vitamin K like green leafy veggies. Having said that, there are some indications that Vitamin E and Pentox do work synergisticallly and that Vitamin E thus enhances the beneficial effects of the Pentox. - George
Thanks, George - I have no problem dropping back down to 400iu of Vit E ... in fact, the Uro did say not to overdo it with the E. Thanks for the heads up.
Nemo
OK, I know you guys (mainly Tim) get tired of hearing about my erectile fortunes ... but I have a question - has anyone ever experienced a blood pressure problem with Pentox and Viagra?
Today I had relations with my girl at lunch (yes, a nooner). I had a 50mg Viagra an hour before (took it at 10:00AM). Earlier, around 8:00, I had my 1G Arginine, 1G ACL and took my 400mg pentox (only the second one I've taken, I just got the prescription yesterday). At lunch, I got a great erection all through foreplay but lost it after a few minutes of intercourse. I seemed winded and just wasn't getting the feeling down there I normally have. I did notice my hands were pretty cold on the way to lunch, which leads me to believe my BP was low.
The only other time this happened to me was when I'd gone all day with little food and took a whopper dose of Arginine before the V - I subsequently passed out in the wee hours, which I attributed to a blood pressure drop. But the sexual details were identical - just couldn't keep her hard for more than a few minutes at a time.
I realize most guys are taking the PAV at night, with only 25mg V. Does it sound plausible that Pentox, Arginine and 50mg V (plus a cup of coffee!) would have caused me some BP problems? I read where Pentox can amplify drugs that lower your BP (like V and Arg).
Sorry Tim, not obsessing, just trying to be safe and scientific about this.
Nemo:
Have read your last posts. Somewhere along the line you have overlooked the advice a lot of us have given you. You stated that you were going to cut back on your sexual activity and relax for a while. Sounds like that you have not done that.
My experience has taught me that trying too hard to have sex on a daily basis and totally satisfy my partner led to failure most every time I tried. So, I guess that what we are trying to tell you is that you are placing too much emphasis on being the stud all the time. You should reduce your times per week drastically, relax and try to keep your mind on other things. Then, when "the time is right" per the ads on TV you can perform with no problems.
The above is just my observations from years of sexual activity.
Old Man
Old Man, you're right, and I don't disagree. I do keep saying I'll take a few days off, but then I have a hard time not having sex with a girlfriend who I love very much. Sex with her is the best either one of us have ever had and when it works right, it's a beautiful thing! If it were a matter of abstaining from my own hand, I'd be fine ... but not having sex with her is much harder (no pun intended). No sex the rest of the week, I promise!
Nemo, given that you have a lot of sex, and every time that you do, you get anxious and worried, I find it harder and harder to respond empathically.
You don't need a rest. You need to stop. IMHO, you need professional help in defining who you are as a man. Tell your girlfriend how worried you are and if she obsessively demands sex, then ask her to stop.
You are wasting a precious resource - us. We may not be the smartest guys in the world, but we're smart enough to give you advice.
So instead of ignoring this advice, try taking it. Instead of apologizing for not taking advice, try listening. I do not need an apology - what you do is your business, and none of our lives or health will go up or down if you do badly. I have no investment in giving you advice and having you take it - it is not personal. Instead, I just think that you are passing on a chance to grow, and you're blowing it totally.
Just my two cents worth. However, I have a three strikes rule here I invoke now and then. If what I say has not gotten through after three tries, then I stop trying. Life is too short. Take care.
Tim
Guys, I'm not ruling out the mental health aspect, I'm simply trying to deal with the physical aspects first and rule out physical issues before I start working on the head. Thus, my trip to Mayo, testosterone tests, etc. I realize you guys think I need to work on the head first, but honestly, I think it's important to do both.
Sorry if it seems i'm dismissing your advice, but respectfully, I come to this board for advice/counsel/discourse on Peyronies Disease symptoms, treatments, etc., not for psychoanalysis. That's simply too complex an issue to be handled on the internet by people who have never met. I'm sorry if this seems stubborn or foolish, but I'm trying to solve some physical mysteries before working on the head. In fact, that's the same tack Uros take when diagnosing ED issues, so I hope you'll cut me some slack and understand if I wish to Sherlock Holmes my problems in a way other than you recomend.
I'd still appreciate your counsel on Peyronie's, etc.
Nemo, I am just unsure of what you are looking for. You say that you want advice on a physical problem but then state that it may be not such a problem after all - maybe in your head. Now you imply that you are going to get your advice from medical professionals (actually, looking back you didn't say that exactly). If that is true, great - I heartily recommend it. But you also said:
"OK guys, I went to the Uro this morning and told him of the weird feeling I've got on the side, that I'm worried is a Peyronie's storm brewing. He couldn't detect anything by feel (nor can I) and said it could be other things causing a sensation other than Peyronie's. Of course, I realize that, but that doesn't stop me from worrying."
So, first off, I hear a doctor who examined you trying to reassure you but that does not "stop you from worrying". Is anyone's advice going to be enough help to you?
Tim
I understand your point, Tim, the doctor couldn't feel anything, but I've read on the boards here guys talking about having a weird sensation or uneasiness in the penis before an onset of Peyronie's scarring, bending etc. As it has been evident at a time when I'm also noticing some small indentions, this is what has me worried about more Peyronie's. I realize the Uro can only go on what he feels or if I tell him there's a bend but I still think it's wise to take every measure I can to load up with stuff that might minimize whatever is going on (like ALC, VitE, Arg, Pentox, etc). That's all.
Nemo, If you REALLY want to prevent Peyronies along with a host of other maladies that could make Peyronies seem like a cake walk, you will need to start to practice a healthy lifestyle featuring 1) healthy eating, 2) healthy exercise, and 3) a healthy sex life. No amount of supplements can make up for a lack of prudence in those areas. You are getting really good advice here already so I wont try to give any specific advice of my own. This forum is full of excellent advice in each of these areas from multiple participants. Believe me, the kinds of things you are experiencing are COMMON. Believe me, satisfying sex depends just as much on what goes on in your head, as on what goes on in your penis AND what goes on in your head AFFECTS what goes on in your penis. Yes, some of these things can mean you are getting Peyronies. But 99% of the time they mean absolutely nothing other than some abnormal nerve stimulation somewhere or some perceptual aberation. Who knows what they mean in your case. But if the Uro says he finds NO indication of Peyronies, put it out of your mind and get on with your life. And don't start worrying about some other dread affliction. Instead, worry about getting your life together and start paying attention to all of the good advice you have gotten here. And, just imagine, you didn't even have to have Peyronies to profit from the Peyronies forum. Thats a pretty good deal. So be thankful and move on to a better life. - George
George, that's good advice, and spoken eloquently. I'll try my friend, I'll try. Thank you for your support.
Nemo
I think you are in need of good guide who can help you different ways, why don't you try for this bodybuilding supplement guide which can help you a lot as you are expecting.
link disabled by Hawk
There is lots of good information at this site, but it is all easily available elsewhere on the web.
This message seems like spam and therefore seem to have no place here. If you have some comments to suggest or add to a discussion, I wam all ears. Otherwise, I have to say it makes me want to avoid that web site.
Tim
Could someone that is using Propionyl L Carnitine tell me an online source? I'm having a hard time finding any. Acetyl L Carnitine is no problem, but PLC is eluding me. I looked on GNC's website as well as Bodybuilding.com (where I get San Vasolflow). Thanks.
Nemo
Nemo, NOBODY sells PLC. I really don't know why. Its just not available anywhere as a stand alone supplement. My solution is to buy Jarrow's CarnitALL 600. With it you get L-Carnitine, Acetyl-L-Carnitine, Arginine, Propionyl-L-Carnitine, and Taurine in a proprietary formulation. I believe there are a few others of these around, but this is the one that works for me. I simply switched from the generic ALC type supplement to this and it supplies the whole 9 yards.
Jarrow also produces PLC in the form of GPLC. With this product you could continue taking your ALC separately. - George
Jarrow Formulas CarnitALL (http://www.jarrow.com/product/190/CarnitALL)
Jarrow Formulas GPLC (http://www.jarrow.com/product/408/GPLC)
George,
Your first link does not work
Hawk
Thanks Hawk! Fixed!
Thanks, George. I'd found that GPLC, but didn't know anything about the Glycine it has in it, but I think that's the way I'll go as it's got more PLC per capsule, thus reducing the number of capsules I'd have to take to get my 2g per day (as opposed to trying to do it via the CarnitALL). I'll also continue to take 2g of ALC and 2g of L-Arginine.
Thanks for the links and info - I appreciate it.
Nemo
Fellas,
I bought PLC in powder form and took it by the spoonful two years ago from a site called Bulk Nutrition. The stuff taste horrible, but I finished the entire container. It didn't help my peyronies, and I didn't order another container, because at that time I was new to the disease and was looking for a quick fix. If and when you buy it, just don't drink it in water alone, because it taste horrible. I used to put it in my orange juice and that made it bearable.
It comes in three sizes; the one here in the link is the middle size. There is a 75-gram container and one for 1,000 grams, I think. Here is the link. Hope this helps.
http://www.bulknutrition.com/?products_id=1962
Boodoo
I am trying not to laugh, not God almighty - that is a testament to the determination of a man to get better if you drank that stuff in any form!
I hesitate to tell you this, but the website also offers the means to make capsules in order to simply swallow it down without the taste. The smell could gag a maggot.
http://www.bulknutrition.com/?cPath=90
You might find a gelatin capsule a lot easier to stomach than the raw stuff. It didn't help me either. Apparently you need to be Italian to improve on it; like many studies done in Italy, it does not seem to be reproducible elsewhere. Come to think of it, that is a recurrent problem in all of this work.
Tim
More reading:
http://www.clinicalanswers.nhs.uk/index.cfm?question=519
More about carnitine:
http://www.swedish.org/111803.cfm
Why double blind studies are useful:
http://www.swedish.org/111803.cfm
Tim,
You're so right. Every time I drank the stuff I had to shout "GOOD LAWD!!!!!" It was horrible, but I downed every bit of it, many times looking down to see if I was fuller after swallowing a few gulps. I figured that anything that horrible would be powerful enough to work right away. LOL
Thanks for the additional reading.
Actually I just happened to run out of ALC and need to order some more. I get the Country Life brand from iherb.com and they have good prices on this stuff. I take 1 gram twice daily. It seems to eliminate most of the pain in my case, but with no apparent other benefits.
Just my $0.02
Pal,
After extensive research, comparison, and averaging over $100.00 a month on supplements to fight Peyronies Disease and prostate cancer I am always puzzled why people pay more for vitamins. I am never sure if they are aware of this source and reject it for some reason that they hesitate to share, or if they remain unaware even though I along with others have referred to it often.
Check out http://www.puritan.com/pages/file.asp?xs=B1BFE1C28E404E2D9E66FC57AEF66EDE&PID=4515&CID=&CPID=31
Scroll down the page for different potency and bottle sizes.
By my calculation you get 2 times the ALC at half the cost (in other words, 1/4th the cost I see for Country Life)
I hope it is needless to say that I am in no way affiliated with this humongous company other than as a steady customer that spends more than I want to but far less than I would elsewhere. Puritan Pride cannot be touched on products they carry. No one ever beats them on price comparison of any product comparing apples to apples. No one even comes close. My only complaint is that they do not sell every formulation I want, so I buy arginine, and a few other things elsewhere.
If anyone finds ANY reason not to buy from Puritan Pride, please share it with me so I can buy elsewhere as well. My entire extended family use them and I am of the impression that their reputation for potency and contaminant free vitamins is stellar.
Hawk
Hawk,
Thanks for the info. I think that is a good deal. I buy the Country Life kind because of the Veggie Caps. For the 500 mg ACL it is not badly priced. However, I will keep the puritan link for other purchases as it seems like they have good prices.
here is the link for the ALC i get from iherb which I am not associated with, btw. I use them based on George's recommendation.
http://www.iherb.com/ProductDetails.aspx?c=1&pid=6394
Thanks Again,
Pal
Hmmm ...
Country Life from iherb = 1 X 120 X 500mg for $14.99
Puritans Pride = 2 X 120 X 250mg for $17.99
Unless I am missing something, I would have to buy five bottles of this to save money at Puritans Pride. AND a lot depends on where you are located. I live much closer to iherb, and I discovered that the shipping is significantly cheaper with me when I order from iherb. That, coupled with the fact that iherb has, at this point, virtually everything I need makes it a slam dunk for me. But I do, on occasion, order from Puritans Pride. They are indeed a good company with an outstanding reputation. - George
Well..actually the difference in price is not that much and like i said for me it was the veggie caps that sealed the deal. But I agree Puritan has some good prices.
For sure both would beat the store prices. I wanted to buy some for the store the other day and the prices were double what you see from iherb or Puritan for half the quantity ( and that was the sale price, btw)
Hey guys,
I've been on Pentox now 400mg 2x/day for about 17 months. I just went in for my checkup a couple weeks ago with Dr. Carson @ UNC Chapel Hill, and thought I'd provide an update on my progress. At my previous visit, he had commented that it seemed like the plaque was softening. That was the first sign of improvement on Pentox. This visit, he said it felt like the plaque size was shrinking, and was very optimistic. So that's good news, eh?
I personally haven't noticed any change in angle, but my erections past the point of the bend seem more solid than they used to be (I had experienced some weakness and narrowing toward the head in addition to the classic curve). In fact I haven't been paying too much attention to my "progress" at all lately since erections/sex lately have been so trouble-free.
Anyway just thought I'd let you all know to be patient if you're on Pentox (or considering it). It took at least a year for my Uro to even detect any improvment.
My current Med/Supplement intake, FWIW:
Pentox, 2x/day
NOW Gamma-E, 2x/day
Natural Factors RxOmega-3 EPA/DHA, 2x/day
Doctor's Best Curcumin w/ Bioperine, 2x/day
myrddin, Thank you so much for the update! I am so happy to hear that you are doing well. I think that what you are experiencing is very typical for Pentox. My understanding of the pharmacology of Pentox is that it can not undo damage that has already occurred. It can only prevent further damage. The only way that pre-existing damage can be resolved is through collagen turnover which is a very slow process. But with Pentox one can stem the tide of ongoing damage AND make way for gradual healing. This does not make for positive research studies since most of them would not allow the necessary time frame to showcase the potential benefits. For most people (even in the research community), if things aren't dramatically better in three to six months, they are moving on to something else. And in a practical sense, it really doesn't matter how much a physician believes in Pentox, most patients will not follow through because of the extended time frame. In my case, I feel that I am doing very well without the Pentox, although, I have to admit that Pentox might be a less expensive way to go in the long run. As I have stated numerous times, I believe that other anti-glycant substances can achieve the same end. And to that mix I have added AGE-breakers which CAN undo damage to a limited degree and Aloe Vera in hopes of accelerating Collagen turnover. Unfortunately, until today, I have been also taking Forskolin which reduces Collagen turnover for other issues which are now resolved. Now that I have stopped taking the Forskolin, I am hoping to see some additional benefit on the Peyronies front from the Aloe. Additionally, I believe that the PolyPC might contribute to the process. But I notice that you are no longer taking PolyPC (or ALC for that matter). Any comment on that? I'm curious since you were quite upbeat about it back in June. I also note that you are NOT taking either Arginine or Viagra. Although I am still taking VasoFlow and HGW, I do not plan to continue them at this point when my current supply runs out, since I believe that most of my improvement is deriving from the anti-Glycation strategy. I do plan to continue with the Gamma-E as an anti-oxidant/anti-nitrant adjuct to the anti-glycants. - George
Myrddin,
Thanks for the update. I am on Pentox also and it has been 10 months, with no apparent improvement yet. It seemed like I had better flacid feel and look about 4 months ago, but that went away. Now it is back to the same way it was. So it is good to know you are seeing improvements. I will stick with it for now also.
Thanks,
Pal
I am about to check with my cardiologist to see if he has a problem with me starting Pentox. Obviously I want to take every positive step out there. My question though is if the limited progress has taken 17 months, how can we be sure that Pentox had anything to do with it? And if Pentox prevents plaque from galloping on, how can we be sure of that?
Which of these can we be sure of:
A penile injury will cause Peyronies Disease
Peyronies Disease is preceded by an injury either micro or macro
Surgery will improve our condition
Verapamil will improve our condition
There will be a cure for Peyronies Disease within the next 20 years
Tomorrow will not bring a catastrophe that will make me forget about Peyronies Disease
We will not stumble across a productive treatment approach right here on the forum.
You are absolutely right. It is difficult to say anything with certainty with Peyronies Disease. In fact, I am finding more every day that it is difficult to say anything of certainty about life in general.
I guess that is why I am not bored. ;)
George,
You're correct in that many supplements have dropped off my list. That doesn't mean I think they are unimportant though, it just means I'm experimenting further and have not noticed any negative side-effects of discontinuing their use (for now).
I ran out of Vasoflow a couple months ago, and will probably re-order it again in the future. I do think it has value and the research is solid. I also continue to think PolyPC and SAMe, in theory, should be effective too, based on the research I've read. It's just that I'm not independently wealthy enough to continue that experiment long-term, especially when any improvement I may get cannot be verified to be due to anything but the Pentox. That's the problem with mixing treatments: if improvment occurs slowly, how do I know which medication caused it? With my PolyPC trial, my reasoning was -- if I noticed any dramatic improvment, then I'd know it was the PolyPC (+ SamE combo). But since nothing dramatic occurred, I knew there would be no way to tell if it was more/less effective than the Pentox I'm taking, so why continue? If at some point in the future, I get off Pentox and still want more improvement, I'll probably go back to it.
So I guess you could say that while I'm on Pentox, any experimenting I do with supplements is really just a search for the magic bullet that will cause more dramatic improvement than I currently notice with Pentox, i.e. a fast cure.
Aside from that, I'm just taking some cardio-healthy supplements like the fish oil, which I'm convinced I should take regardless of whether my penis is bent. And the curcumin (http://en.wikipedia.org/wiki/Curcumin) is kind of combo treatment in that it seems really good (http://www.ncbi.nlm.nih.gov/pubmed/11606625?ordinalpos=10&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum)for you, but there is also some hope for it helping resolve plaque (http://www.ncbi.nlm.nih.gov/pubmed/15590663).
While Hawk IS correct in pointing out that there really are few things we can be certain of in life, the evidence supporting the use of Pentox goes beyond our own experiences and beyond even the meager evidence provided by research. It involves understanding the processes that are at the heart of Peyronies and the predictable effects of Pentox on those processes. That understanding predicts that Pentox would have a mildly inhibiting effect on fibrosis, and that is just about the best we can hope for right now. And it is an effect that I will welcome any day. I think the bigger question is one that is touched on by myrddin in his post: "Can we afford it?" and also "Is it cost effective?". In other words would I rather take the money and put up with the Peyronies, because many of the more likely effective treatment approaches are NOT inexpensive. But the fact is, at this point there are NO silver bullets and not even any potential silver bullets. There are only POTENTIAL long term strategies. Personally, I will prefer to engage in a long term strategy at this point. - George
myrddin, Thanks for the reply! I totally agree regarding the cost issue. I am continually reviewing my supplement list looking for things I can drop. And then there are some things, like the SAMe, that I have to admit that even if it is more effective than most, I really just can bring myself to pay $60 for a months supply. It makes me feel like I would be back to the old Neprinol game. For that money, I can buy three second tier drop ins. But I do intend to give the PolyPC a shot. I also like NAC and have been taking it for some time now. However, I have been reading that while NAC should be effective against fibrosis, in the body, it behaves much like Vitamin C. In other words most of it is gone in less than an hour and most of it simply gets wasted. So that is driving me to try substituting a new time release version from Jarrow called NAC Sustain. Thanks for the tip on Circumin. What I find really fascinating in the link you supplied was the assertion that it works in "very low amounts". Although I stopped taking Circumin in pill form, I continue to take it in the form of Turmeric, as a spice. And at least it looks like it will lower my risks for Alzheimers (there are times that I wonder whether I am already suffering from that as well :) ), even if it does not cure my Peyronies. And its very affordable (not to mention tasty!). - George
George,
If you stop the curcumin, maybe you will forget you have Peyronies Disease ;)
Fellas,
I have been meaning to try this diet for quite some time, and I will; as soon as I can get the cook of the house to stop making tasty meals. LOL
It is called the Master Cleanse, and the idea is to cleanse the total body during a fast that lasts at least 10 days. I'm not sure I would do it for that long, even though I have done a three-day fast on nothing but water.
The "Grade B" or "Grade C" maple syrup nourishes you with vitamins and minerals while your body feeds off itself after several days. The reason I think it might have implications for Peyronies Disease is that when the body feeds off itself it forces faster cell renewal, and with VED and especially traction use, can possibly help remove the plaque a lot faster.
I'm going to give it a try after I finish the leftovers in a day or two.
Here are a couple of links. I was too tired to find the part about the body feeding off itself, but maybe someone can locate it and highlight it for the forum. It may not be in the two links I have posted, and if not, I can look it up later.
http://www.geocities.co.jp/Beautycare-Venus/2032/english/master_cleanser.html
http://www.geocities.com/HotSprings/Spa/7244/master_cleanse.html?20075
bodoo2u,
I am not one that opposes supplements, adjunct treatments, or even such things as fasting. I once fasted on nothing but water for 5 days, mostly as an experiment and a challenge.
I do however look for evidence, hard facts, and documentation to back-up catchy phrases. There is no doubt that if you stop eating that the body feeds off of itself. It is forced to get its energy by breaking down fat ant a large percent of muscle tissue. Clearly this classifies as "feeding off of itself" and is nothing novel.
I would be very interested in the contention that this leads to "cell renewal". Cell renewal could be defined as "when you start eating you make more fat to replace what you just fed off of."
I applaud trial of sound alternative and complimentary practices to attack the problem of Peyronies Disease which the medical community has failed to conquer for centuries. This has to have basis in fact however and not vague phrases and claims. Clearly at best, Peyronies Disease needs a l o n g term solution. Whatever a fast does, it is over when you return to old eating habits. Some of these cleansing diets and claims rank right in there with the likes of ear candling which is laughable. Junk science and fraud result when we stop demanding evidence , documentation, and facts. It reminds me of the "40 lbs of colon debris some say we are walking around with unless we buy their book or miracle cleanse. I have talked to doctors that can see every crevice of the bowel with a colonoscopy that can tell you such claims are non-sense.
PS: Someone would have to show me that maple syrup on an empty stomach did anything other than provide sugar calories that likely increase insulin, which likely leads to putting an insulin lock on fat metabolism. The result is more muscle breakdown during a fast. That in-turn, results in an even lower metabolism. Maple syrup cannot have more than TRACE amounts of vitamins. This would be far overshadowed when compared to the sugar content which is anything but positive.
boboo2u and Hawk,
Food deprivation effects the body in the following way. It actually SLOWS down the process of cell replication. And that is a GOOD thing, since human cells can only divide X number of times due to the fact that DNA replications degrades the DNA in the process by shortening the telemores. This IS the scientific fact of the matter. This whole issue has absolutely NO bearing on Peyronies, although it does have a bearing on general health. In that sense, responsible calorie restriction can result in a longer and healthier life span. There is some evidence that fasting MIGHT be beneficial in this respect. Resveratrol, now becoming a common supplement has the same effect as calorie restriction.
But, as I have pointed out on numerous occasions, all types of sweeteners, INCLUDING things like honey, ARE bad for Peyronies in a number of ways. Hawk has pointed out several, including insulin increases which result in systemic inflammation which is NOT beneficial for Peyronies in any way whatsoever.
The bottom line is very much as Hawk has pointed out. THERE ARE NO QUICK EASY SOLUTIONS. The fact that we all tend to gravitate toward those approaches creates a fertile ground for people lacking in integrity to exploit. Don't fall for these scams. They are only seeking to part you from your money and make a fool of you. All of the reputable scientific evidence points to a common sense healthy diet, along with common sense healthy exercise as your most promising ticket to good health. There are NO silver bullets. - George
Gnosis:
You asked ,
Quote from: gnosis on February 22, 2008, 11:56:04 PM
I heard Mulhall say that Pentoxiphylline works in the research dishes with plaque but not as clearly in the body. wonder if anyone has tried iontophoresis with Pentox??? ...
I have been using Pentox for 10 months now with no apparent benefit. My Dr. thinks it is softening the plaque. Some members here have reported some benefits from using it for a year or longer. Please check the "improvement" section. It may depend on the time you had peyronie.
Best Regards,
Pal
A lot of people simply have a wrong understanding of how Pentox works. They seem to think that somehow it "dissolves" plaque, like Collagenase. The reality is very different. Pentox works by short circuiting the process that creates the plaque. That means that the plaque that remains will have to be resolved naturally by the body itself. And that is a LONG process. So I don't think that simply applying more Pentox via iontophoresis or any other trans-dermal approach would result in any real benefit. I DO think that for reasons not clearly understood, Pentox seems to work better and faster for some than others. This may be a result of genetics, diet, lifestyle (smoking, etc.), age, or any number of other reasons, or a combination of all of the above. What is clear, at least to me, is that Pentox DOES work. It works in vitro. It has been known to work in vivo in some situations. And quite a bit is now known about HOW it works. It has also been shown to be effective in treating other forms of fibrosis. BUT, it is not a cake walk. It IS a long process that takes patience and a willingness to work on a solution over an extended period of time. If a doctor "thinks" that the plaque in question is "softening", that is a good sign, since doctors often have a better grasp on these things than the patient does. When we live with something continually, it is often hard to assess where it is going. The transitions are just too subtle and it can be very deceptive to try to rate our progress or lack of. - George
Hi Guys,
As I'm waiting to get my VED and start some vacuum therapy I've been taking oral vitamin E and applying a topical E oil directly. Is anyone still doing this? I'm considering the supplement ALC, and then the literature mentioned the enzymes, bromelain, papain, serra peptase, rutin,and nattokinase...? Anyone swear by any of these, or have any warnings? "Supplements"-"enzymes", seem innocuous (?) but I know some of these things can be serious. Any feedback will be greatly appreciated.
AR
As one who has been down the enzyme route before, I can tell you not to expect too much from them. I certainly didn't experience any success with them. There are no INDEPENDENT studies indicating that they are effective and there is no real reason to believe that they would work on a pharmacological level in my opinion. They may (or may not) be able to break down plaque in a petri dish, but translating that to working in a living human body is a whole other story. In the case of ALC, it HAS INDEPENDENT research indicating that it may be helpful in dealing with Peyronies AND there is an in vitro pharmacological rationale for that effectiveness. But as I have stated over and over on this forum, IT TAKES A LONG TIME. I believe that ALC and other anti-glycants are over the counter analogues of Pentox. They knock out the glycation process and in doing so knock out the flow of TGF-beta-1, oxidation and inflammation that fuel Peyronies and other fibrotic diseases. I also believe that Vitamin E, both orally and topically, can be useful. Vitamin E is a potent anti-oxidant and if it also contains that Gamma varient, a potent anti-nitrant. But the key is in attacking the glycation process that is driving the oxidation in the first place. The VED is also useful and many have benefited immensely from using it. BUT, don't waste your money on enzymes. Thats my advice. - George
I'm confused. I've read below the pro's, con's, logic behind the use of "pentoxifylline." Is it sold under the name of "Pentox" or "Trental" or other names? What is the recommended daily take? I see myrddin takes 400 mg x 2 daily. Is that high, low, average?
What about "Neprinol" for peyronies? Has anyone used it with any success of lack thereof?
Thanks George,
I've taken enzymes off my list!
I'll continue with the vitamin E, but can't find 'Gamma variant' mentioned on any of my products at home, nor did my two local health food stores know what that is? Found the ALC (60 caps for 35 bucks.) and I'm hoping it's just a one-a-day thing! Also, of importance, is it dangerous in any way?
Much appreciated.
AR
AR, most studies that focussed on Acetyl L Carnitine used 2 grams per day, in divided doses. That's 2 capsules in the morning and two at night, for instance. Personally, I'm taking 3 grams a day.
Yes, it's pricey, but as you know, if there's even a hope of a chance for it being helpful (which studies seem to indicate it is), it's probably worth the capital outlay.
Good luck,
Nemo
What is the advantage of Acetyl L-Carnitine over plain old L-Carnitine as it relates to Peyronies?
Ptolemy, Don't waste your money on Neprinol. Its just another enzyme formulation, but it has a fancy name, a proprietary formulation, and a lot of promotion behind it. As for Pentox, it is a prescription drug and, as such, dosages are usually calculated by a medical doctor. Your best course of action would be to try to find a doctor willing to prescribe it for you.
AR, Vitamin E comes in the form of Alpha-Tocopherol, Gamma-Tocopherol and two other Tocopherols and four Tocotrienols. I simply can't believe that your local health food people are not aware of this.
Puritans Pride High Gamma E (http://www.puritansale.com/pages/file.asp?xs=D2900B385E624870B41D06E4083B18DC&PID=4414&CID=40&CPID=6898&rlid=)
Puritans Pride ALC (http://www.puritan.com/pages/file.asp?xs=0C4A9B997A964D5CAC1B719DC86F8B41&PID=4515&CID=&CPID=31)
Now Foods Gamma E from iHerb.com (http://www.iherb.com/ProductDetails.aspx?c=1&pid=299)
Now Foods ALC from iHerb.com (http://www.iherb.com/ProductDetails.aspx?c=1&pid=316&at=0)
GNC Isomer E (http://www.gnc.com/product/index.jsp?productId=2133477&cp=2108437&sr=1&origkw=vitamin+e&parentPage=family)
GNC ALC (http://www.gnc.com/product/index.jsp?productId=2133330&cp&sr=1&origkw=acetyl&kw=acetyl&parentPage=search)
Ptolemy, The short answer is that there is at least one INDEPENDENT study indicating ALC to be effective against Peyronies. There are NO studies indicating L-Carnitine to be effective in this regard. For a long answer, we could get into a pharmacology discussion as to how each of these amino compounds work and how they are assimilated. ALC delivers the L-Carnitine to where it is needed in the body, plain old L-Carnitine doesn't do the job in this regard. The two Carnitines likely to be most helpful are ALC and gPLC. Thats the reality here. - George
A lot of the frustration with Pentox and ALC are that they don't work fast enough and they are both expensive. In general, I think what is never considered in this regard is the question: "What is the value of simply bringing Peyronies to a halt and preventing further damage?" I would like to see studies done on this point alone because I suspect that it would make both of these substances shine. Personally, I would take them just to hold the line, that would be more than enough value to me. Something to think about. - George
Thanks for your info George999. I agree with you - bringing it to a halt would be a gigantic step. It is difficult to assess my past two years of treatment because it it unclear what would have happened with no treatment. Bringing peyronies to a halt would help me better assess the impact of Traction, VED and all the other options.
Thanks George, for the skinny on E, and the list of brands.
Thanks Nemo, for the dosage info on ALC.
AR
Gents, is an anti-inflamatory drug ever prescribed for Peyronie's in the early stage? I take Advil for the mild tenderness or sore feeling that seems to migrate about my shaft, but I'm leery of overdoing the Advil, and honestly can't tell it does anything for this issue. Is there something more powerful docs prescribe when you're in an inflamatory stage?
Nemo,
I know of no solid information that any one thing works better than another with inflammation associated with Peyronies Disease. Inflammation is however a component associated with most cancers and many other diseases. Controlling inflammation MAY hold the key to many heath issues. An anti-inflammatory diet is a basic starting point. (Google anti-inflammatory diet). (avoid bad fats, sugar, eat fruits and veggies) It can well be said that a generally healthy diet may be generally healthy because of the very fact that it controls inflammation.
There are lots of anti-inflammatory products both nutritional, Over-the-counter (OTC), and prescription. Most are Cox2 inhibitors.
Nutritional: Garlic, Turmeric, Zyflamend (a product that is a mix of several herbs and has been studied at major universities)
OTC: Advil, Aleve (naproxen sodium), asprin
Prescription: Celebrex - This drug has a pretty impressive safety record in spite of a similar drug (Vioxx) being pulled by the FDA. Also interestingly, it has recently been found through clinical studies that it actually knocks prostate cancer (PCa), back through not only its cox2 impact, but also by speeding the death of PCa cells that refuse to die at a normal cell death rate. Trials have now shown Celebrex to even have a significant impact with recurrent PCa in humans. (""Celebrex treatment appears to exert a antiproliferative, antiangiogenic, and pro-apoptotic effects")
It makes me curious whether Celebrex could have a similar impact on cells making up Peyronies Disease plaque cells that resist normal cell death in the lab and that have an association with inflammation. (This last question is only a passing though of mine. There is know evidence, studies, or professional theories that I know of that even raise this question much less answer it.)
I a interested in hearing from men here who take Celebrex for arthritis and whether they have comments on any benefits for Peyronies Disease inflammation. Judging from the age distribution of our members, it would even be very interesting to find that there is not a good number that take Celebrex.
I know I mentioned earlier that I'm taking Curcumin (the helpful ingredient in Turmeric and Curry) in hopes of some benefit with Peyronies. But I've noticed lately on PubMed a lot of newer 2008 studies done on Curcumin that also seem to support its potential usefulness against fibrosis and inflammation. Sample (from this (http://www.ncbi.nlm.nih.gov/pubmed/18292803?ordinalpos=10&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum) study):
QuoteCurcumin also blocked AB-induced inflammation and fibrosis through disrupting p300-HAT-dependent signaling pathways. Our results indicate that curcumin has the potential to protect against cardiac hypertrophy, inflammation, and fibrosis through suppression of p300-HAT activity and downstream GATA4, NF-kappaB, and TGF-beta-Smad signaling pathways.
There are many other good studies (this (http://www.ncbi.nlm.nih.gov/pubmed/17900536?ordinalpos=4&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum) one is a good summary), so I won't link to them all, but I just offer this in the hopes that it may be helpful to someone here. Go to PubMed, search on Curcumin, and read a few.
Here is yet another link on circumin:
Curry Ingredient May Cut Cardiovascular Risks - HealthDay February 28, 2008 (http://www.healthday.com/Article.asp?AID=612975)
I took Circumin for a while and then just started buying Turmeric and using it in my food. It was all kind of based on hope like myrrdin writes. But now, I see using Turmeric as a spice as just a no brainer for anyone who is not downright allergic to it. Some foods are just so nourishing that everyone should include them in their diet. Other foods are so toxic that no one should be eating them. - George
I started the Pentox last night but I don't think I can handle it. The Uro set me up with pills of 400 mg x 2 each day. I checked with my Cardio and he gave me the OK. Unfortunately it gives me arrhythmia and light headedness. On both occasions, the same reaction. Darn, I am anxious to try something more than the VED and Traction. The Acetyl L-Carnitine I began a few days back has no negative side effects.
I saw something here a while back, about a drug for depression (?) that had the side effect of causing erection and/or sleepiness...and the guys were talking about taking it in smaller doses than prescribed, etc. I can't find it in my notes or in any of our threads.
Please direct me to that chat.
Thanks.
AR
AR, that's Trazodone. A seach should pull it up.
Nemo
Quote from: George999 on February 25, 2008, 09:30:36 PM
A lot of the frustration with Pentox and ALC are that they don't work fast enough and they are both expensive.
http://www.vitacost.com/NSI-Acetyl-L-Carnitine-HCI-500-mg-300-Capsules
for $30.
That's not really all that expensive.
Guys, the prescription I have for Pentox is extended release, 400mg. Is that standard or is there a non-extended release version of Pentox?
I'm asking my doc to let me up dosage from 1 a day to the preferred 3 (he's very cautious), but I dont' know if I need a new prescription, or if the pills I already have are the kind people are taking 3 times a day per Lue and Levine's protocol.
Thanks,
Nemo
The pills you have are the ones that I've been taking 3 times a day for close to a year now
Jon, thanks for the link on Vitacost ALC. What a *great* price!!! AR, I hope you caught this link. Vitacost has great prices on ALC and other great products. - George
Caught it George. Thanks Jon. I'm ordering right now! AR
On a retail price can anyone tell me what the cost
might be for the 400mg. Pentox? With no insurance
some Rx is out of the question.
Quote from: MUSICMAN on March 04, 2008, 01:20:47 PM
On a retail price can anyone tell me what the cost
might be for the 400mg. Pentox? With no insurance
some Rx is out of the question.
I don't recall it being too awfully expensive, because it's available in generic. That is pentox is the generic of Trental. IIRC it was ~$30 for a month's supply, which for me was 90#
George, I was reading your reply to my earlier post and want to know if my daily spoonful of Unsulphered Blackstrap molasses has the same effect on Peyronies Disease as sugar, honey and the like. Also, and anyone can answer this, how much Resveratrol do I need, what's the best form for Peyronies Disease (powder, liquid, tablets) and what is the best brand?
Bodoo2u,
I will let George answer the specifics of your post but I want to point out something that I know he will agree with. There is no best form of resveratol for Peyronies Disease, in the sense it is even a "Peyronies Disease treatment". It is important to understand that a nutritional, antioxidant approach is not a targeted Peyronies Disease treatment like Verapamil.
I do not minimize the importance of good nutrition which includes supplements. It is just important that someone not pop a supplement and call it a Peyronies Disease treatment because VERY VERY few supplements would meet that concept of the definition.
bodoo2u,
First of all, all forms of molasses qualify as refined sugars. Therefore they would tend to raise blood glucose levels which is bad in terms of Peyronies. The sad fact of the matter is that the ONLY safe sweets are fruits in their natural form. This is because they contain sugars that are bound in fiber. This causes those sugars to be released very slowly and gently in the body allowing the body's insulin system to perform optimally. ALL other forms of sweeteners, including 'natural' forms such as honey, tend to release more rapidly into the bloodstream, stressing the body's insulin system. Starchy foods are also major offenders, since they are rapidly converted to glucose by the liver and release large amounts of glucose into the bloodstream quickly. Our typical Western diet is cursed by too much protein, too little fiber, and all the wrong kinds of carbs and fats. This is the backdrop of metabolic syndrome and all of its associated symptoms.
Second, Peyronies is a disease of the extra-cellular matrix, not of the body's cells themselves. Resveratrol's function is to increase levels of Sirtuin which, in effect, cause cells to age more slowly. This means that Resveratrol with all of its health benefits has exactly ZERO impact on Peyronies. What is implicated in Peyronies is a process known variously as the Maillard Reaction, non-enzymatic Glycosylation, or simply Glycation. This occurs when Glucose attaches abnormally to intercellular protein and robs it of its normal supple character. The result of this process is that the cells become "poisoned" by the resulting TGF-beta-1, free radicals, cytokines and the like and eventually sprout excessive amounts of protein on their walls thereby worsening the problem. All of these poisons also cause adjacent cells to have their protein become glycated and so the process continues. Promoting this process are elevated (not necessarily fasting) blood sugar levels, and/or Carnisone deficiency. SO, if you want to stop that process, you need to look to antiglycants. (Of course, antioxidants such as Vitamin E can also be helpful in dealing with the poisoned environment.) Topping the list of antiglycants are Pentox and ALC. These are the ONLY two substances with research evidence behind them indicating that they MIGHT be helpful in dealing with Peyronies. Other possibilities are Aloe Vera, PolyPC, Benfotiamine, Pyridoxamine, Pyridoxal-5-phosphate, GPLC, L-Carnosine, Pyruvate, Mangosteen, Quercetin, Rutin, ALA, etc. since they all have research behind them indicating that they inhibit glycation or otherwise affect the glycation process. Once you stop glycation, the half life of collagen is ten years. That means that ten years from now you can expect roughly 50% improvement. BUT even more important in this regard, you want to clean up your diet and get sufficient exercise. - George
Below is a rudimentary sketch of the effect of glycation:
thanks for your reply nemo - I have been on Trental 400 for about a week now and will keep you posted on my progress - is there any other prescription drug that you have heard of or can recommend at this stage - I am travelling to the USA next Friday ( from Sydney) and will be meeting with a Urologist at the Uni of San Francisco so it would be great if I was armed with a bit more information.
One other thing, why does the pain hurt somedays and on other days I can hardly feel it??
Cheers
Pentox (Trental) is the only prescription drug that anyone has any hope for at the moment. In the past, common prescriptions were Potaba and Colchesine, but most feel these are of no use. If it's Dr. Leu you're seeing in San Fran, he might prescribe you the "cocktail" of Pentox/Viagra/L-Arginine. This is the most popular oral treatment at the moment.
Nemo
thx for your reply nemo - if I take this cocktail mix including viagra does this mean I will be walking around with a hard on?? and yes it is the Dr Leu in SF ( all the way from Oz to see him) now thats dedication!
No, not at all. That's not how V works. Besides, most take it before they go to sleep to encourage nocturnals.
Nemo
1) has anyone had success or have you had success with trental 400?
2) why does the pain come and go - I can be sitting at my desk at work on the computer and be fine, get up go make a tea/coffee and the next minute Im in pain - why does it vary so much, especially when i am in the car driving?
3) why does the nodule feel hard one part of the day and softer at other parts of the day?
Thx
Iceman, Please take a moment to review my post below in response to bodoo2u. In it, I outline my understanding of the underlying physiology of Peyronies and point out some substances that may be useful. The pain and hardness of the nodules reflect varying levels of inflammation rather than the state of the fibrosis itself. That is why they tend to be so dynamic. - George
thx george - how long does the pain (inflammation) tend to last - i reckon Ive had this pain for 2-3 months now (but noticed the bump last Oct 07) - am I in the early phases of the disease which means that treatment now maight be more beneficial than say in another 6 months time - ??
Iceman, I believe that the pain itself is due to inflammation. My pain was really intense and lasted for weeks. The intensity each one experiences probably depends on the degree of inflammation. You lower the inflammation and the pain goes away, you lower the inflammation more and the nodules melt away. The Pentox (Trental) should really help a whole lot with the pain AND the nodules. Aside from that, my favorites would be Full Spectrum Vitamin E (to quench the free radicals resulting from the glycation), Mangosteen and ALC. All of these together should really womp the inflammation and resulting pain. Personally, I wish I had known what I know now back when this all started around three years ago for me. But hopefully you are able to profit by the experiences of everyone here on this forum. I would really urge you to take the time and read through these threads as you are able. There is lots of valuable information here on what works and what doesn't. Its a lot of info to sort through, but there is a lot of good stuff here and you never know what you might discover that might be helpful. One thing I can tell you about Peyronies is that the first six months or so are crucial. If you can successfully knock out the underlying inflammation within the first six months, you have a good chance of avoiding a lot of the potential tissue damage that can really be debilitating. The doc you are seeing in SF is one of the top uro's out there. He will provide you with a treatment that is state of the art and will give you the best shot at a full recovery. It is just really good that you are on top of this at such an early stage. But my advice would be to throw everything you can muster at the glycation process and the inflammation it is fomenting. Its like a fire, the sooner you can knock it down, the less damage it will do, and the easier it will be to put it out. That's the way I understand the disease. I wish you the very best and hope you have a great time in San Francisco. Its a beautiful city! I know it well since I lived there for nearly 25 years. - George
thx george - thats the most encouraging email I have read so far ( sorry hawk)....Ill keep you posted about the resulting visit to Dr Leu...
I guess I have been lucky in that I never experienced pain in the more than 2 years that I have had Peyronies Disease. Does the length of time that mean that I have stabalized or calcified, and some of the treatments that can help people in the early stages won't work for me?
hey hawk - what do you know of mangosteen - is it worth it???
cheers
iceman
I went to a urologist y'day and he said I have this perronie's disease. 6 weeks back, while having sexual intercourse i snapped my penis or i broke it,
since then i have a hardening on the outer wall of the penis and am having lot of pain in the glans penis in a erection. The urologist has asked me to take claritin (antihistamine)..this is puzzling.
Should he be giving me something just for the penis for the hardening to reduce. Do you think I will be ok soon if i continue to take claritin. Please let me know what else should I take especially since we are in the process of planning for the second child.
Thanks
I know nothing of value about mangosteen.
I have absolutely NO reason to suspect it has anything to do with Peyronies Disease.
Rather than chasing the tens of thousands of foods, supplement hype, etc. It makes more sense to understand the disease and institute an entire plan of diet and supplements known to impact the possible underlying causes. A healthy plan includes: diet, life style, VED or Traction, Oral Medications, and psychological / social health.
There will be no single supplement or food cure for Peyronies Disease.
Hawk, Since you know "nothing" about Mangosteen, perhaps I can fill you in on some things. When I recommend something for Peyronies, I don't just pull it out of the air. I have some underlying theories based on available information and research that lead me to those conclusions. Granted, not every possible link is covered, but there are some pretty clear patterns that would indicate some pretty clear probabilities.
Mangosteen1) Mangosteen contains Xanthones. One of those Xanthones is Garcinol.
Quote from: FoodFacts.comMangosteen - The mangosteen (Garcinia mangostana) is a tropical evergreen tree, believed to have originated in the Sunda Islands and the Moluccas. The tree grows from 7 to 25 meters tall. The rind (pericarp) of the edible fruit is deep reddish purple when ripe. The fragrant flesh is sweet and creamy, citrusy with a touch of peach flavor. In Asia, the mangosteen fruit is known as the "Queen of Fruits." It is closely related to other edible tropical fruits such as button mangosteen and lemondrop mangosteen. It has a flavor similar to but different from its cousin the button mangosteen with an interesting taste but unlike its cousin its skin is a hard rind instead of being tissue-thin. The outer shell of the fruit, its exocarp, is firm (softens during ripening), typically 4-6 cm in diameter, and contains astringent phytochemicals which discourage infestation by insects, fungi, plant viruses and bacteria. The same phytochemicals are pigments giving the exocarp its characteristic purple color, including phenolic acids, also called phenols. These pigments have antioxidant properties which afford the fruit further protection from ultraviolet radiation and free radicals generated during photosynthesis. Isolation of exocarp pigments has permitted their identity to be revealed as xanthones, mainly garcinol and mangostin[1], which, as phenolics, make the exocarp highly astringent and inedible. Cutting through the shell, one finds edible flesh, botanically defined as an aril, shaped like a peeled tangerine but bright white, about 3-5 cm in diameter, nested in a deep red outer pod. Depending on the fruit size and ripeness, there might be seeds in the aril segments. The seeds, however, are not palatable unless roasted. The number of aril pods is directly related to the number of petals on the bottom of the pericarp. On average, a mangosteen has 5 aril segments (round up figure). The plant does not start producing fruit until around 15 years old, which is somewhat an impediment to cultivation. Several commercial mangosteen juices are on the public market, primarily in the United States and Canada. The multi-level marketing company XanGo markets a mangosteen juice blend in the US.
FoodFacts.com (http://www.foodfacts.com/public/glossary.cfm?c=m)
2) These Xanthones are harvested and included in popular Mangosteen juices and supplements (Check the labels).
3) Mangosteen Xanthones are powerful anti-inflammatory agents.
Quote from: PubMedThe tropical trees and shrubs of the genus Garcinia (Guttiferae) are widely known for their pigments and use in folk medicines (1, 2). Phytochemically, they are recognized as a rich source of xanthone and xanthonoid natural products with high pharmaceutical potential (3). For example, gamboge, the commercially available exudate of Garcinia hanburyii, has been used in traditional Asian medicine for the treatment of indigestion, inflammation, and ulcers (4). Efforts to identify the bioactive components of these extracts have yielded an ever growing family of natural products, the chemical structures of which feature a unique 4-oxa-tricyclo[4.3.1.03,7]dec-8-en-2-one scaffold built into a common xanthone backbone (5).
PubMed - Xanthones (http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=514429)
Quote from: PubMedRESULTS: The preliminary investigation of the anti-inflammatory activity of the novel xanthone derivatives showed uneven anti-inflammatory and analgesic activity. The highest anti-inflammatory and analgesic activity was provided by compound MH-44. The compounds MH-41, MH-43 and MH-48 potentiated the carrageenan edema and lowered the threshold pain in comparison with control. Side effects of the active compound were examined on gastric mucosa and stomach and none of the active compounds showed significant side effects compared with nonsteroidal anti-inflammatory drugs.
New xanthone derivatives as potent anti-inflammatory agents. (http://www.ncbi.nlm.nih.gov/pubmed/15687751?ordinalpos=4&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum)
4) Garcinol is a known antiglycant compound.
Quote from: The Journal of NutritionNatural products with anti-glycation activity. Recent studies have highlighted the benefits of using medicinal plants with combined antiglycation and antioxidant properties in diabetic patients. Green tea from the leaves of Camellia sinensis is a popular drink worldwide. It contains large amounts of tannins (flavonoids), which are known for their antioxidant properties. Recently a study has shown that green tea has antiglycation activity in addition to antioxidant activity (19). Both of these properties are believed to reside in the tannin component in green tea. In this study green tea extract and tannin inhibited AGEP formation in a dose-dependent manner, with tannin being the more potent inhibitor. Other substances such as caffeine and theanine had no effect on AGEPs. Both green-tea extract and tannin had antioxidant activity, but tannin had the greater effect. Again, related substances such as caffeine and theanine had little antioxidant activity (19).
Garcinol, isolated from Garcinia indica fruit rind, has been shown to possess antioxidant, metal-chelating, and antiglycation properties in an in vitro system (20). In the same study, garcinol proved to be a more effective inhibitor than aminoguanidine. Recently, a water-soluble fraction obtained from tomato paste inhibited formation of AGEPs and proved to be more effective than aminoguanidine (21). This tomato fraction contained rutin, a potent antioxidant also responsible for the antiglycation activity.
Antiglycation Properties of Aged Garlic Extract: Possible Role in Prevention of Diabetic Complications (http://jn.nutrition.org/cgi/content/full/136/3/796S)
Quite honestly, I would challenge anybody to match up a good quality Mangosteen product against any of the over the counter pharmaceutical products available for inflammation. My personal experience is that it beats them all hands down. And I think there is plenty of research out there that supports that. - George
Quote from: George999 on March 13, 2008, 12:31:31 PM
Quite honestly, I would challenge anybody to match up a good quality Mangosteen product against any of the over the counter pharmaceutical products available for inflammation. My personal experience is that it beats them all hands down. And I think there is plenty of research out there that supports that. - George
How would a person accept such a challenge ???
Besides, can we trust researchers' conclusions ;)
I don't think that claritin will help. NO data supports that. The good news is that you may have an acute injury that will completely heal with some good luck and effort - the bd nes is that the doctor did not give you advice to support that direction of movement. So I would advise that you A) see a new doc, B) read up here on therapies so that you can ask some informed questions, and C) Keep coming back here for support!
Tim
Quote from: Hawk on March 13, 2008, 12:57:43 PMHow would a person accept such a challenge ???
Exactly the way one tries different pain killers to see which one seems to work best.
Quote from: Hawk on March 13, 2008, 12:57:43 PMBesides, can we trust researchers' conclusions ;)
Only if those conclusions match up with the conclusions of other studies. The problem comes when one tries to rely on the conclusion of one study in isolation. When you have multiple studies involving different research teams all reaching a similar conclusion, you have pretty reliable guidance. In the case of a single, never replicated study, you can toss a coin on it.
- George
Please understand that I am not claiming miraculous properties for Mangosteen. There are vendors out there who are. And they are charging exorbitant prices for their Mangosteen products. The reality is that there are reasonably priced quality Mangosteen products available. Just check the labels to make sure they include the active ingredients. And you don't have to take gobs of it at a time to reap the benefits. I have a family member who was experiencing severe spinal pain after a nasty auto accident which sent her to the emergency room. The typical prescription drugs were not doing the job effectively. Just a very small amount of Mangosteen, less than a half a cup, worked for her. The vendors want you to drink this stuff like water in order to achieve miracles. Don't fall for it.
A Friendly Skeptic Looks at Mangosteen (http://chetday.com/mangosteen.htm)
Quote from: George999 on March 13, 2008, 01:17:13 PM
The problem comes when one tries to rely on the conclusion of one study in isolation. When you have multiple studies involving different research teams all reaching a similar conclusion, you have pretty reliable guidance. In the case of a single, never replicated study, you can toss a coin on it.
- George
George,
I don't think that is where the problem lies.
Your attempts to understand and unravel things you are untrained or uneducated to unravel is heroic. In so doing you come up with a lot of interesting data. I think at times individuals invest enough in an endeavor that they put on blinders and loose all objectivity. The result is, that they can only apply rational thought if it supports THEIR opinions. They then embrace the irrational if necessary to reject opinions outside of their effort.
The facts are sad but these are the facts. THERE ARE NO REPRODUCIBLE STUDIES of any of the supplements you recommend either alone or in combination in correcting Peyronies Disease. Most of the supplements you recommend have never even been associated with Peyronies Disease by anyone but you. You base your endorsement soley on deductive reasoning of a mind untrained in medical research, physiology or any associated field. No one here has reported even anecdotal improvement from them. You then turn around and in an instant postulate
theories wild guesses about types of heat and physiology that no one in medicine, or physics have ever postulated. You then promote such guesses to dismiss a study outside of your efforts. You do so even though the mechanisms of temperature on tissue, injuries, and blood flow are well documented. You do so even though the effects of blood flow on Peyronies Disease are a central theme.
I have no doubt it is honest and unintentional, but therein lies the problem.
A debate on hyperthermia continues from this point in the discussion. Continuing discussion on Temperature Vs Type of heat can be found at the following clickable link
Quote from: Hawk on March 13, 2008, 03:02:05 PMHawk
Quote from: Hawk on March 13, 2008, 02:05:56 PMTHERE ARE NO REPRODUCIBLE STUDIES of any of the supplements you recommend either alone or in combination in correcting Peyronies Disease.
One could argue, I suppose, that there are no reproducible studies regarding Pentoxifylline. Certainly one of the supplements that I "recommend", Acetyl-L-Carnitine, has just as much research behind it as Pentoxifylline. Another is Vitamin E which has absolutely no research to back its effectiveness against Peyronies and yet even doctors recommend it.
I don't claim to be an expert on these things. But I do claim to spend an awful lot of time pouring through medical research and meticulously following the latest medical discoveries. I claim neither infallibility or miracles, but I do think I have gained an understanding of the underlying molecular physiology involved in Peyronies disease and a reasonable long term strategy for countering that process. The result in my own case has been slow but steady quantifiable improvement without a single flareup during the period since starting this regimen. My own projections are that this approach will take years to produce truly significant results, but that is a better prognosis than most other approaches offer. In addition, I acknowledge that other techniques such as the VED can also most certainly be beneficial, but I choose not to use them. In short, I am really quite satisfied with where my approach is getting me and I choose to share what I have learned on this forum. If you want to play the role of the skeptic, that is not only your privilege, it is also my pleasure, since that tends to keep me honest in terms of guarding myself against making extravagant and unsubstantiatable claims. So know that I am not taking anything you say personally and I hope that you would return that favor. You only challenge me to either back up what I say or acknowledge that I can't back them up and that is a good thing.
As for the hyperthermia study, the tables are indeed turned. Now I am the skeptic and you are the advocate. And I would submit that all of this simply adds up to a healthy discourse. But I would point out that the best opportunity for a breakthrough will be a treatment that targets the underlying process in a deliberate kind of way rather than the shot in the dark kind of stuff that I, myself, have tried in the past. - George
A debate on hyperthermia continues from this point in the discussion. Continuing discussion on Temperature Vs Type of heat can be found at the following clickable link
Quote from: Hawk on March 13, 2008, 03:02:05 PMHawk
Hawk, Regarding glycation, please note that in a post back in December of last year I asserted that traditional fasting glucose level measurements are not sufficient to detect dangerous levels of dynamic serum glucose capable of causing damage typical of diabetes.
Quote from: George999 on December 29, 2007, 01:37:29 PM
Quote from: Tim468 on December 28, 2007, 09:50:56 PMHard to know where obesity fits in. I got Peyronies Disease when my body fat was measured (using caliper estimates from four spots) at 9%. My aerobic capacity was at the 99.5th percentile for my age (30, I think I was). Yet I got Peyronies during that time of my life.
Tim, I think there IS an answer to this conundrum. And that answer has to do with the concept that Peyronies at its root is glucose driven. And what one has to realize is that a person can be VERY fit and STILL have high DYNAMIC glucose levels. Traditional blood sugar tests measure only fasting serum glucose, NOT dynamic serum glucose OR insulin levels. Some people, genetically, just have very robust insulin producing capacity, which means that 1) they are subject to damage inflicted by humongous spikes in insulin, 2) they are capable of withstanding wide swings in blood sugar levels which 3) will be pretty much guaranteed to have returned to grossly normal levels at the point of a traditional fasting test. I would further suggest that this untested dynamic factor is just one reason that traditional tests of everything from serum glucose to cholesterol are not the be all and end all in terms of predicting the future. Additionally, I find it interesting that there are some pretty arbitrary guidelines for establishing the presence of metabolic syndrome. Yet it is also clear to me that metabolic syndrome doesn't start the second, minute, hour, day, week that some test reveals some number going over an arbitrary threshold. Certainly, by that point in time, the process is long established and loaded with forward momentum, which makes it even more difficult to deal with. But we are saddled with a medical system that is basically attuned to treating symptoms rather than promoting prevention, and that is why we are stuck with the mess we are all stuck with today. And, as you very eloquently point out, our whole system as a society, and increasingly as a world, is geared to sending us hogtied down that road. Our food supply is tailored to it, our job constraints are tailored to it, our medical system is tailored to it. It takes a powerful lot of determination to try to buck that trend. But I am convinced that even little steps in that direction will bring huge rewards. They already have for me, I've tasted of it, and thats why I'm not stopping here. - George
Please also note that finally the research community is sounding warnings about this problem.
Quote from: HealthDay on March 13, 2008The finding suggests that eye damage happens much earlier and at lower blood sugar levels than what is currently used to pinpoint the presence of diabetes, Wong said. "This suggests that diagnostic threshold may have to be revised, so that we can pick up more people who are at risk of eye and other complications," he noted.
In addition to retinopathy, signs of cardiovascular disease also appear to develop at glucose levels below those defined as diabetes, Wong said.
One expert agrees that fasting blood sugar levels may not be the best way of diagnosing diabetes and those at risk for diabetes.
"It is becoming more common that studies are showing that a fasting blood sugar value is not necessarily the best way to judge diabetes or diabetes control," said Dr. Stuart Weiss, an endocrinologist at New York University Medical Center.
Weiss noted that right now there is no other marker for diabetes. However, many new studies point to the use of blood sugar levels after eating as being better markers for risk, he said.
"Fasting blood sugar is not all that helpful," Weiss said. "The problem is that a lot of our thinking is based on fasting. That's an issue we need to focus in on," he said.
Marker for Diabetes Might Miss Early Vision Complication - Eye damage begins at blood sugar levels below current threshold for diagnosis, study finds (http://www.healthday.com/Article.asp?AID=613110)
So you can point out my lack of credentials as much as you like and I will acknowledge that, but I do spend a lot of time looking at these studies and at times I am seeing things that SHOULD be obvious. - George
Kmurali 70, I read with great interest that your doctor asked you to take an antihistamine. There is a release of histamine when peyronie's is active. I have taken the antihistamine fexofenadine several times for brief periods over the last 4 years. I have read that some (very few I bet) doctors have prescribed this drug in the very early stages of peyronie's. I believe both Claritin & Allegra block Histamine-1 receptor on tissues. Claritin is the weaker of the two in that regard. I have taken it particularly when I thought my peyronie's was becoming more active. Recently I noticed that my curvature seemed to be getting worse. My doctor prescribed generic fexofenadine 60mg daily. Within a few days the worsening stopped. After 2-3 weeks the curvature actually improved. I estimate a 20% improvement. The improvement has lasted about 9 weeks now. This is the best that this drug has performed for me. I am not taking this every day now; just playing it by ear as to when to take. With this improvement I feel ready to socialize again! For the past 4 years I have used on a daily basis topical magnesium sulfate cream. I intend to use the MS cream indefinately.
Quote from: mark501 on March 13, 2008, 09:46:20 PM
Kmurali 70, I read with great interest that your doctor asked you to take an antihistamine. There is a release of histamine when peyronie's is active. I have taken the antihistamine fexofenadine several times for brief periods over the last 4 years. I have read that some (very few I bet) doctors have prescribed this drug in the very early stages of peyronie's. I believe both Claritin & Allegra block Histamine-1 receptor on tissues. Claritin is the weaker of the two in that regard. I have taken it particularly when I thought my peyronie's was becoming more active. Recently I noticed that my curvature seemed to be getting worse. My doctor prescribed generic fexofenadine 60mg daily. Within a few days the worsening stopped. After 2-3 weeks the curvature actually improved. I estimate a 20% improvement. The improvement has lasted about 9 weeks now. This is the best that this drug has performed for me. I am not taking this every day now; just playing it by ear as to when to take. With this improvement I feel ready to socialize again! For the past 4 years I have used on a daily basis topical magnesium sulfate cream. I intend to use the MS cream indefinately.
Thanks for your support that at least someone has been taking a antihistamine to correct this disease.
My issue is that I am not even concerned about the curvature, i have wondered about the curvature before i got Peyronie's but i had carried on my sexual life with no issues.
After I got Peyronie's, the pain when I get erection in the glans penis is unbearable, forget even about having intercourse.
I just want to get back to my normal life and hope this freak accident is gone forever without any further complications.
I will let you know about the progress soon.
I am always interested in seeing oral treatments with some sort of backing from the research community. So far I have seen only Pentoxifylline and ALC in that category. But I believe that there are other beneficial supplements, many of which I am making use of. And now I find a research link referencing one of those.
Quote from: PubMedRed cell aspartate aminotransferase saturation with oral pyridoxine intake.
Oshiro M, Nonoyama K, Oliveira RA, Barretto OC.
Hematology Division, Instituto Adolfo Lutz, Av. Dr. Arnaldo 355, São Paulo, Brazil CEP 01246-000. maoshiro@ial.sp.gov.br
CONTEXT AND OBJECTIVE: The coenzyme of aspartate aminotransferase is pyridoxal phosphate, generated from fresh vegetables containing pyridoxine. Vitamin B6-responsive sideroblastic anemia, myelofibrosis and Peyronies syndrome respond to high pyridoxine doses. The objective was to investigate the oral pyridoxine oral dose that would lead to maximized pyridoxal phosphate saturation of red cell aspartate aminotransferase. DESIGN AND SETTING: Controlled trial, in Hematology Division of Instituto Adolfo Lutz. METHODS: Red cell aspartate aminotransferase activity was assayed (before and after) in normal volunteers who were given oral pyridoxine for 15-18 days (30 mg, 100 mg and 200 mg daily). In vitro study of blood from seven normal volunteers was also performed, with before and after assaying of aspartate aminotransferase activity. RESULTS: The in vivo study showed increasing aspartate aminotransferase saturation with increasing pyridoxine doses. 83% saturation was reached with 30 mg daily, 88% with 100 mg, and 93% with 200 mg after 20 days of oral supplementation. The in vitro study did not reach 100% saturation. CONCLUSIONS: Neither in vivo nor in vitro study demonstrated thorough aspartate aminotransferase saturation with its coenzyme pyridoxal phosphate in red cells, from increasing pyridoxine supplementation. However, the 200-mg dose could be employed safely in vitamin B6-responsive sideroblastic anemia, myelofibrosis and Peyronies syndrome treatment. Although maximum saturation in circulating red cells is not achieved, erythroblasts and other nucleated and cytoplasmic organelles containing cells certainly will reach thorough saturation, which possibly explains the results obtained in these diseases.
PMID: 15947830 [PubMed - indexed for MEDLINE]
One of the supplements I am currently taking is Jarrow Pyridoxall which is custom designed to attack glycation. Ingredients are Pyridoxamine diHCI 50mg, Pyridoxine HCI 5mg, and Pyridoxal-5-phosphate HCI 5mg. I am taking one of these per day and I find the above research note very interesting and encouraging. - George
George (or anyone who wants to answer this),
Does the Jarrows formula have have soy in it? I'm interested in trying some of it. It's too bad that I discovered the forum after I stabilized. I assume that after more than two years I have stabilized, however, I have never experienced pain as a result of Peyronies Disease. Does that mean that I may still be active? How many guys do not experience pain at all?
About Mangosteen, I purchased a bottle of capsules from a company whose label claims it has five times the potency of the juice concentrate. What do you think about that claim; are capsules effective against glycation?
With all the talk on the forum about fibrosis and inflammation I have begun to pay more attention to my unit. Sometimes, I notice that it appears to be shrunken and rigid in the flaccid state, although my erections are still full and hard. Is that a sign of things to come? It also appears that I can see signs of the dreaded hourglass figure, but only when I am flaccid.
Can anyone explain any of this to me?
Quote from: bodoo2u on March 15, 2008, 02:31:25 PMDoes the Jarrows formula have have soy in it?
This product does not appear to contain soy. From the Jarrow site:
Pyridoxall (http://www.jarrow.com/product/255/Pyridoxall)
Here is some further reading on Pyridoxall components:
Quote from: PubMedInhibition of glycosylation processes: the reaction between pyridoxamine and glucose.
Adrover M, Vilanova B, Muñoz F, Donoso J.
Institut Universitari d'Investigació en Ciències de la Salut, Departament de Química, Universitat de les Illes Balears, E-07122 Palma de Mallorca.
Glycosylation of proteins by glucose produces toxic and immunogenic compounds called 'advanced glycosylation end products' (AGEs), which are the origin of pathological symptoms in various chronic diseases. In this work, a kinetic study of the reaction between glucose (2) and pyridoxamine (1)--a potent inhibitor of AGEs formation both in vivo and in vitro--was conducted. The NH2 group of pyridoxamine was found to react with the C=O group of glucose to form the Schiff base 9 (Scheme 2). Subsequently, the Schiff base gives rise to other products, including compound 3, pyridoxal, pyridoxine, and 4-pyridoxic acid. Compound 3 inhibits the Amadori rearrangement, and prevents the formation of other C=O groups capable of triggering glycosylation processes. Pyridoxal and pyridoxine can also inhibit protein glycosylation via other previously reported mechanisms.
PMID: 17193188 [PubMed - indexed for MEDLINE]
Quote from: bodoo2u on March 15, 2008, 02:31:25 PMI'm interested in trying some of it. It's too bad that I discovered the forum after I stabilized. I assume that after more than two years I have stabilized, however, I have never experienced pain as a result of Peyronies Disease. Does that mean that I may still be active? How many guys do not experience pain at all?
In your case the damage obviously was advancing without pain. I would take that to mean that damage can and does occur painlessly although for some people it may be accompanied by pain. Pain may indicate that more damage is occurring more rapidly than in the case of damage without pain. I also see palpable plaques as a sign of activity. Some people have Peyronies devoid of palpable plaques. Some have never had palpable plaques that they can remember. Thus destructive activity may occur even in the absence of any outward signs except the end result of deformity. I don't think that the passage of two years is any guarantee that continuing damage has ceased. I think the only indicator of a cessation of activity is a long term stabilization in the nature of the deformity itself. Thus Peyronies is very difficult to analyze based on short term outward manifestations. Thats why I prefer to deal with it based on a more theoretical approach based on glycation and antiglycants such as Pyridoxall.
Quote from: bodoo2u on March 15, 2008, 02:31:25 PMAbout Mangosteen, I purchased a bottle of capsules from a company whose label claims it has five times the potency of the juice concentrate. What do you think about that claim; are capsules effective against glycation?
The active ingredients in Mangosteen are the Xanthones based on their antiglycant and antioxidant activity. It really doesn't matter whether it is in juice for or capsule form, as long as it contains a high amount of Xanthones from the rind of the fruit, that is what matters.
Quote from: bodoo2u on March 15, 2008, 02:31:25 PMWith all the talk on the forum about fibrosis and inflammation I have begun to pay more attention to my unit. Sometimes, I notice that it appears to be shrunken and rigid in the flaccid state, although my erections are still full and hard. Is that a sign of things to come? It also appears that I can see signs of the dreaded hourglass figure, but only when I am flaccid.
I consider these things to be absolutely meaningless. A healthy flacid penis assumes all sorts of weird shapes and forms based on observable and non-observable stimulus. Don't waste your time worrying over this stuff. What matters is abnormal pain, abnormal palpable plaque, and deformity when erect. These are the things the uros are concerned about and they know their stuff. These are the ONLY issues you should be concerned about and the ONLY things you should gage your progress by. And while I think eliminating pain and palpable plaque are important and a good sign of progress, the real gold standard is reducing the deformity itself. If you can bring on an ongoing and consistant reduction of the deformity, no matter how gradual, you are on the right track. - George
For anyone interested in knowing more about Mangosteen, there are a number of published research articles out there:
Quote from: PubMedInhibitory effects of xanthone on paraquat- and NaNO(2)-induced genotoxicity in cultured cells.
Tanaka R.
The inhibitory effects of xanthone on genotoxicity induced by paraquat and NaNO(2) in cultured Chinese hamster lung (CHL) cells were examined. Xanthone forms the central core of xanthones. Xanthones are present in mangosteen, which is widely used as health food because of its many pharmacological properties. Paraquat (PQ, a superoxide anion generator) and NaNO(2) induce genotoxic effects, including sister chromatid exchange (SCE) and decreased cell cycle rate, in CHL cells. Xanthone inhibited the genotoxic effects of PQ and NaNO(2) at concentrations of more than 5 microM. The present results suggested the potent antigenotoxic effects of xanthones in mangosteens.
PMID: 18198487 [PubMed - indexed for MEDLINE]
Cardioprotective effect of alpha-mangostin, a xanthone derivative from mangosteen on tissue defense system against isoproterenol-induced myocardial infarction in rats. (http://www.ncbi.nlm.nih.gov/pubmed/17994576?ordinalpos=6&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum)
Quote from: PubMedOligomeric proanthocyanidins from mangosteen pericarps.
Fu C, Loo AE, Chia FP, Huang D.
Department of Chemistry, National University of Singapore, 3 Science Drive 3, Singapore 117543, Republic of Singapore.
Oligomeric proanthocyanidins were extracted from mangosteen pericarps and fractionated by a Sephadex LH-20 column to give 0.66% yield (dry matter). (13)C and (1)H NMR signals showed the presence of predominantly procyanidins together with a few prodelphinidin units along with small amounts of stereoisomers of afzelechin/epiafzelechin, catechin/epicatechin, and gallocatechin/epigallocatechin. Depolymerization with benzylmercaptan resulted in epicatechin thioether as the major product, and the mean degree of polymerization was determined to be 6.6. The electron spray ionization-mass spectrometry and matrix-assisted laser desorption/ionization time-of-flight mass spectra revealed the dominant B type oligomers with mainly epicatechin units and with a small amount of A type oligomers. The isolated proanthocyanidins are potent peroxyl radical scavengers as evidenced by the high oxygen radical scavenging capacity at 1.7 x 10 (4) micromol TE/g, much higher than that of pine bark and grape seed extracts.
PMID: 17715900 [PubMed - indexed for MEDLINE]
Characterized mechanism of alpha-mangostin-induced cell death: caspase-independent apoptosis with release of endonuclease-G from mitochondria and increased miR-143 expression in human colorectal cancer DLD-1 cells. (http://www.ncbi.nlm.nih.gov/pubmed/17553685?ordinalpos=13&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum)
Antioxidative and neuroprotective activities of extracts from the fruit hull of mangosteen (Garcinia mangostana Linn.). (http://www.ncbi.nlm.nih.gov/pubmed/16763395?ordinalpos=18&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum)
Antibacterial activity of alpha-mangostin against vancomycin resistant Enterococci (VRE) and synergism with antibiotics. (http://www.ncbi.nlm.nih.gov/pubmed/15830842?ordinalpos=23&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum)
Antiproliferation, antioxidation and induction of apoptosis by Garcinia mangostana (mangosteen) on SKBR3 human breast cancer cell line. (http://www.ncbi.nlm.nih.gov/pubmed/14698525?ordinalpos=27&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum)
Induction of apoptosis by xanthones from mangosteen in human leukemia cell lines. (http://www.ncbi.nlm.nih.gov/pubmed/12932141?ordinalpos=28&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum)
Garcinone E, a xanthone derivative, has potent cytotoxic effect against hepatocellular carcinoma cell lines. (http://www.ncbi.nlm.nih.gov/pubmed/12451486?ordinalpos=30&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum)
Inhibitions of histamine release and prostaglandin E2 synthesis by mangosteen, a Thai medicinal plant. (http://www.ncbi.nlm.nih.gov/pubmed/12230104?ordinalpos=31&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum)
These are just a few of a long list. This fruit and its components have some pretty remarkable qualities that are only beginning to be discovered. - George
>>I am always interested in seeing oral treatments with some sort of backing from the research community. So far I have seen only Pentoxifylline and ALC in that category. But I believe that there are other beneficial supplements, many of which I am making use of. And now I find a research link referencing one of those.
>>Red cell aspartate aminotransferase saturation with oral pyridoxine intake.<<
The article references Peyronie's but did not study it. I will look to see if I can find the whole paper and dig up the original paper in their references.
Tim
I cannot easily get a copy of the paper (when I click on "Whole Text" it comes up blank). A comprehensive search of PubMed and Ovid combining pyridoxine and Peyronie's yields no hits.
Tim
Tim, I share your frustration. The problem with a lot of these loose ends is that many of the studies that tie in with Peyronies are buried out in the piles of research related to Diabetes, much of which never really gets published, but is nevertheless familiar to Diabetes researchers. Historically it seems like it has been somewhat of a walled off area since the general assumption was that these things simply do not apply to non-diabetic situations. But now that whole premise is collapsing under its own weight as new studies are showing that you don't have to have clinical diabetes to suffer significant glucose damage. I would indeed be really nice to have access to all of this data. - George
George, the referenced paper says in the abstract that there is data linking "Peyronies syndrome respond to high pyridoxine doses". That usually means that the paper will contain a reference of some sort about that. Unless it predates 1947, I should be able to find it (if the authors listed those two terms in "Keywords" as all authors are required to do).
The paper with the abstract listed below should have yielded me a full text copy, but it did not. So although these authors (Oshiro M, Nonoyama K, Oliveira RA, Barretto OC in Brazil) make this statement, I cannot find the full text article to verify it. It's frustrating because usually I can - especially when the Ovid search page offers me a view of it; usually if there is no full text version available, then that option does not pop up.
I'd like to find it!
Tim
has anyone had any success using EDTA chelation drops??? - on their website it states that it work/can help Peyronies Disease - is this just another money scamming ploy?
Thanks...
Can anyone explain what effects rigorous sexual intercourse will have when i am in the 7th week of Peyronie's.
Even though there will be extreme pain, i need to have kids now, so i am thinking..better to have do it and get over with it.
Once i am done, I am willing to abstain from sex for the rest of my life since there is no cure for Peyronie's.
Any of you have experienced what are the long term effects of doing so. Please help.
Well, I'll throw in my three cents worth. I don't think there is anything wrong with having sex in the case of Peyronies. It just needs to be done in a gentle way that won't cause any unnecessary increase in the inflammation. And if you are in "the seventh week", you really need to be taking anti-inflammatory measures to bring that inflammation to a halt anyway. Get yourself on stuff like Acetyl-L-Carnitine, full spectrum Vitamin E and Mangosteen juice and other anti-inflammatory stuff that is documented on this forum. The faster you get rid of the inflammation, the less long term damage you are likely to have from the Peyronies. And while there may not be a cure for Peyronies, there certainly ARE things you can do for it. ALSO, if you have an understanding urologist, you need to read the information on this site about the drug Pentoxifylline. This is a drug which very likely CAN help you with the Peyronies, but you need a doctors prescription for it. It is an off-label use, so you need to get your facts together so you can make a convincing argument as to why he should prescribe it for you. - George
kmurali, there's no need to have "rigorous" anything if you're dealing with Peyronie's. Anything "rigorous" stands to make it worse by putting mechanical strain on the penis. As I recall, you don't have much curvature, just pain in the glans, right? If that's the case, gentle, well lubricated sex (no girl on top) shouldn't do any damage, but the emphasis here is "GENTLE" ... don't go nuts. No bending, awkward angles, etc. Good luck with getting pregnant - I wish you the best on that front, as well.
Nemo
Iceman, I think I have said before that I find EDTA, a common preservative, to be a very interesting substance. Who knows what it can do? But I can tell you that there are NO scientific studies out there verifying its effectiveness against Peyronies and that elicits a really negative response from me when I see people CLAIMING it to be helpful UNLESS they can actually reference studies that indicate that it might be helpful. And even then, when people claim that something "CURES" Peyronies, all of my antennas go up simultaneously. Here is a disease that all of the best docs in the world find very difficult to treat and someone comes out of know where claiming to have a cure. HELLO!!!! You ask if that is a scam? WHAT DO YOU THINK? I would run in the other direction and hold on tight to my wallet while doing so. Those are my thoughts. - George
hi guys - over the past 7 days ive been taking manosteen + for the past 10 days bromelain tablets - this is on top of Trental and the pain has significantly reduced. No kidding Im in the design business and I am at my computer the whole day and in and out of meetings - sometimes the pain is so bad that Ive gotta go to the bathroom and sort of have a bit of a tug to get the blood moving through me.. so far today and yesterday there has been little or no pain, lets hope this continues. On anothewr point I just want ot say that this site and all the feedback has been great - although some of it is very depressing its at least a place I can turn to and know that there is someone there aoart from my visits to the Uro - Im outta here in 2 days to vist Dr Leu so hopefully I can furnish you with any updates and anything he tells me - but by the sounds of it you guys have the lastest info.
Cheers and thx
Quote from: Iceman on March 18, 2008, 03:23:10 AM
- Im outta here in 2 days to vist Dr Leu so hopefully I can furnish you with any updates and anything he tells me - but by the sounds of it you guys have the lastest info.
Make a list of questions ON PAPER! Do not leave this visit wishing you had thought to ask...
If it is impractical to make notes of what he says during the visit, make them immediately after.
hawk - i know this is a big ask but are there any killer questions that you can think of that I should ask him - other than the usual :
- how long will it last
- why trental
- what other treatments are there.
Much appreciated...
I'm confused and would appreciate some guidance or insight. I have read posts promoting "L-Carnitine", "Propionyl L Carnitine" and "Acetyl Carnatine" all falling in the category along with Pentox as being the two supplements that have "MIGHT" have some very long term benefits in the treatment of Peyronies Disease along with other therapies. My questions are:
1) What is the differences among the three (or is it just a matter of branding)?
2) Which one(s) actually have any science behind them in helping reverse the Peyronies Disease scarring (or at least slow any progression in later stages)?
3) Has anyone heard of prescription "Levocarntine"? I have been prescribed it for a condition unrelated to Peyronies Disease and wonder if it is the same chemistry as the Propionyl L Carnitine and Acetyl Carnitine promoted by some here.
Jake, Here are some answers for you.
1) L-Carnitine, Propionyl-L-Carnitine, and Acetyl-L-Carnitine are not the same substances. They are, however, different forms of the same substance, L-Carnitine. But their effects on the body are different. And there is no "branding" involved here, all of these terms are generic.
2) At this point there are three substances that are referenced in research documents as having potential benefit for Peyronies. They are 1) Pentoxifylline (brand name=Trental), Acetyl-L-Carnitine, and Pyridoxine. The first of these is a prescription drug, the latter two are supplements. All three of these fall into a category of substances that are known to inhibit glycation, which is the tissue degenerating process believed to be behind Peyronies.
3) Levocarnitine is simply a brand name for L-Carnitine sold under a prescription. There is no scientific evidence that L-Carnitine is useful in the treatment of Peyronies. There is scientific evidence that L-Carnitine does not not have the same effect as Acetyl-L-Carnitine when taken orally.
Hope this is helpful. - George
George, what is the data or reference on pryidoxine?
Thanks, Tim
Tim, Its the reference in the Brazilian paper that you were unable to access the full copy of. There are also a number of studies indicating it to be beneficial in regard to diabetes related issues. - George
George, is this the same Pyridoxine that I can get at the health food store labeled "B6", and if so is it an anti-glycant? I'm asking because when I called the store where I sometimes buy my suplements the clerk said it was B6. I noticed in your last message that you said it was one of the three substances to show promise in clinical studies. I assume that the other ingredients in the Jarrows formulas have shown no benefits, and that you recommend them for their anti-glycation properties.
OK, all I had to do was read carefully and I would have seen the answer to my questions.
Is Pyridoxine the same as Pyridoxal 5 Phosphate? A Doctor had me on this among with a number of other herbs and vitimins for arthritis symptoms I have. It was somewhat expensive so I discontinued after a year.
Ptolemy, Vitamin B6 comes in multiple forms. There is one form that is known as an "AGE breaker". It stops the production in the body of Advanced Glycation End Products. This, as I recall, is Pyridoxamine. The other two forms, Pyridoxine and Pyridoxal-5-Phosphate, are anti-Glycation substances that work in multiple ways. There is more info and a research report in one of my posts below. There is also a lot of positive research data on this group in the diabetes and diabetes related diseases realm. But all of these substances have potential effectiveness in the case of Peyronies and Peyronies is specifically noted in the Brazilian paper cited below.
And yes, while not particularly expensive, certainly no where near the Neprinol price level, they are not cheap as commodity type supplements. Jarrow makes a product with all three in one pill which is the one I am currently using. - George
George,
The abstract of that paper says that it has been helpful, but a PubMad or Ovid search give me no hits at all from 1950 or thereabouts to now.
It is really weird to get a "No Data" when I do a complete documet search. I will look again, but I am very unconvinced of any real Peyronies connection.
Also, I read that "No flush" niacin is not as useful to your health as the regular niacin, and that needs to be taken frequently because of it's rapid clearance from the body. I will look for that reference - I read it ina thing by Dr Weil.
Tim
Tim, what makes me really confident that B-6 is beneficial is the overwhelming amount of research on the glycation side of the equation. So that makes me suspect that it could be very useful for Peyronies and the note in the Brazilian abstract makes me suspect that there is some unpublished work out there somewhere that would tend to confirm that. I admit that this is all speculation on my part, but with so little to go on I am ready to jump on whatever comes along that looks promising. And right now this whole thing is working for me. I would be the first to admit that I still have Peyronies, but just being able to reliably shut off the flareups longterm and reliably have the palpable plaques slowly dissolving away longterm is more than enough for me. And on top of that, it is doing wonders in terms of other health issues, not just Peyronies.
Everything I am reading these days is pointing back to glucose and glycation. I just saw a study that came out this morning that reveals that elevated glucose levels literally shut down cell regulation. The suspicion is that this is a big link in the cancer mystery. - George
I think most of us are familiar with Potaba. Potaba is often prescribed for Peyronies. Potaba is a prescription substance that is known as an antifibrinolytic. That is, it has been shown to be effective in countering fibrosis and specifically in reducing plaque size and curvature in the case of Peyronies:
Quote from: PubMedPotassium para-aminobenzoate for the treatment of Peyronie's disease: is it effective?
Carson CC.
Division of Urology, University of North Carolina, School of Medicine, Chapel Hill 27599-7235, USA.
The medical treatment of Peyronie's disease remains controversial. Oral and injectable medications have been used with little documented disease specific effectiveness. Potassium para-aminobenzoate (POTABA) has long been suggested as a treatment for the plaque, curvature, and pain produced by chronic Peyronie's disease. We report a retrospective review of 32 patients treated for at least 3 months with 12 g of POTABA powder daily and followed for 8 to 24 months. Symptom resolution demonstrated improvement in penile discomfort in 8 of 18 patients, decreased plaque size in 18 of 32 patients, and improvement in penile angulation in 18 of 31 patients. Complete resolution of angulation was reported in 8 of 31 patients. While this review was retrospective and uncontrolled, it does suggest a place for POTABA in the treatment of Peyronie's disease. In order to confirm these findings and to control for the natural history of spontaneous resolution of Peyronie's disease symptomatology, a prospective, double-blind, multicenter, well-controlled study with objective criteria should be established.
PMID: 9422444 [PubMed - indexed for MEDLINE]
Potassium para-aminobenzoate for the treatment of Peyronie's disease: is it effective? (http://www.ncbi.nlm.nih.gov/pubmed/9422444?ordinalpos=9&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum)
A later more elaborate study failed to verify the curvature benefit but did verify the reduction in plaque size, but was a 12 month study as opposed to a 24 month study.
In any case, the reality is that Potaba is actually simply a potasium salt of PABA, a commonly available supplement. And PABA just happens to be another one of those Vitamin B derivatives. But does generic, cheap as dirt PABA have the same antifibrinolytic benefits that the prescription drug Potaba has? Well ...
Quote from: PubmedThe effect of intravesical instillation of antifibrinolytic agents on bacillus Calmette-Guerin treatment of superficial bladder cancer: a pilot study.
Pan CW, Shen ZJ, Ding GQ.
Department of Urology, Rui Jin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China.
PURPOSE: We determined whether intravesical instillation of antifibrinolytic agents could improve the antitumor effect of bacillus Calmette-Guerin. We also investigated the impact of these antifibrinolytic agents on the dose of bacillus Calmette-Guerin required for a therapeutic effect. MATERIALS AND METHODS: In this randomized, prospective, double-blind, controlled pilot study 257 patients with superficial bladder cancer were randomized into groups A through E. They received 100 to 120 mg intravesical bacillus Calmette-Guerin plus 100 mg para-aminomethylbenzoic acid, 50 to 60 mg bacillus Calmette-Guerin plus 100 mg para-aminomethylbenzoic acid, 100 to 120 mg bacillus Calmette-Guerin plus 2.0 gm epsilon aminocaproic acid, 50 to 60 mg bacillus Calmette-Guerin plus 2.0 gm epsilon aminocaproic acid and 100 to 120 mg bacillus Calmette-Guerin alone, respectively. Prothrombin time and activated partial thromboplastin time of each patient were determined at 2 hours after instillation, and adverse events were evaluated. Tumor recurrence was assessed every 3 months postoperatively by cystoscopy. Median followup was 26.0, 25.0, 24.5, 25.0 and 25.5 months, respectively. RESULTS: No significant change in prothrombin time or activated partial thromboplastin time was observed, and analysis showed no significant difference in prothrombin time or activated partial thromboplastin time among groups A through E (p = 0.693, 0.756). Recurrence rates at a minimum of median 2 years were 10.6%, 11.1%, 10.0%, 9.3% and 31.8% in groups A through E, respectively. The log rank test showed that recurrence-free probability was statistically different comparing groups A, B, C and D with group E, respectively (p = 0.023, 0.037, 0.031 and 0.020), while pairwise comparisons among groups A, B, C and D showed no significant differences (each p >0.05). The rate of serious adverse events in groups A through E was 9.6%, 3.9%, 15.7%, 5.9% and 13.5%, respectively. However, the differences were not significant (p = 0.222). CONCLUSIONS: Intravesical instillation of para-aminomethylbenzoic acid or epsilon aminocaproic acid is a more effective and safer method to improve the bacillus Calmette-Guerin antitumor effect, and can reduce the dose of bacillus Calmette-Guerin with the same effect as the full dose.
PMID: 18289576 [PubMed - indexed for MEDLINE]
Para-aminomethylbenzoic acid is PABA. As Tim correctly points out above, Para-aminomethylbenzoic acid is NOT PABA, but PAMBA. Thus, there is NO evidence that PABA can be used effectively in place of POTABA. THANKS TIM FOR POINTING OUT MY MISTAKE IN THIS! - George
So this tells me that anyone wanting to try Potaba for Peyronies could actually substitute generic PABA if insurance is not an issue. This DOES look interesting! - George
I think that para-aminomethylbenzoic acid is called "PAMBA" and is different than para-aminobenzoic acid ("PAPA") - presumably a methyl group is attached somewhere.
Not sure that activity is the same or even similar.
Tim
"According to Holt, PABA can increase methotrexate levels, activity, and side effects. (Holt GA (1998) Food & Drug Interactions. Chicago: Precept Press, 170.) para-Aminomethylbenzoic acid (PAMBA), a methylated derivative of PABA, has been found to be useful as a proteinase inhibitor for reducing the invasiveness of transplantable melanoma metastases in hamsters (Zbytniewski Z, et al. (1977) Arch Geschwulstforsch 47: 400-404). The action of PAMBA is to inhibit proteolysis by extracellular proteases, thus preserving the extracellular matrix as a physical barrier that reduces the invasiveness of cancer cells. Reducing invasiveness, however, does not inhibit the growth of an established metastatic tumor. There is no suggestion therefore that PAMBA inhibits the growth of primary or metastatic melanoma. Nor is there any suggestion that PAMBA inhibits melanogenesis, or that it can enhance the effect of radiation or the activity of chemotherapeutic agents known to be useful in treating melanoma."
Tim
http://www.wipo.int/pctdb/en/wo.jsp?WO=2004%2F058241&IA=WO2004%2F058241&DISPLAY=DESC
Tim
I was on Potaba for about 18 months over 12 years ago when I first was diagnosed with Peyronies. I now have fibrosis in the corpora's from injection therapy and Peronies. This caused the failed implant procedure last October.
I do not understand all the technical material about potaba. In your opinion will Potaba help the fibrosis in the corpora's so I can have successful implant surgery?
I am using the VED treatment recommended by Old Man and that seems to be helping. I have gained back some length. I also have better feelings in my penis after back surgery 8 weeks ago for L4 & L5.
Thanks
Jackp
I think that POTABA may help, but I personally found it hard to keep up on the amount recommened. I had to take a LOT of capsulre three times a day, and I just could not do it. I was young though, and maybe now I would be more motivated. Back then, it was a tiny dent, and I think I just thought - "it seems stable so I'll bag this crap" (i.e. stop it)
I think that it sounds like you are hitting on some things that are helping and that is great.
Tim
hi guys,
Just had a meeting with Dr L - in San Fran and the only thing he said was worth trying was Trental 400 - its a relatively new drug - when I asked him about any other treatments he just said that they were a waste of time!!! - just thought I would let you all know.
cheers
Iceman, as I recall, you travelled from Australia to meet with Dr. Lue, correct? If so, why don't you post a report on the "Urologists and other doctors" thread and give us a full report on your experience? I think anyone considering travelling to see Dr. Lue would find it very helpful.
Nemo
will do...
Hawk: just thinking - maybe you should have an area called sucess stories where people can post stories on how they have improved and what medication they have taken for this - just a thought...
Quote from: Iceman on April 01, 2008, 01:47:01 AM
Hawk: just thinking - maybe you should have an area called sucess stories where people can post stories on how they have improved and what medication they have taken for this - just a thought...
:) We do, it is called "Improvement - Accounts of improvement in deformity or erection". I often get requests for topics that already exist. It puzzles me.
There are however several I know that have had real improvement that have not posted there for reasons I don't understand. Yet one more thing that puzzles your administrator. :D
Hawk:
Just a thought. Possibly, when guys do get some relief, they tend to forget about letting the Peyronies Disease community know about it. I guess that the term, "out of sight, out of mind" applies here to. They really should come back to the forum and give all the benefit of what worked for them.
Old Man...
old man - have you ever had trental 400 ( pentox) - you seem to have had this for a while ??
Iceman:
No, I have never used Trental or any of its sister drugs. They were not in the medical system when I had my worst case of Peyronies Disease.
Old Man
to everyone - Dr L just replied to me: - perhaps it can be of interest - once read i have a few questions for hawk if he is there
Nice to see you in San Francisco
Answer to your questions below:
1) On several internet sites people do mention chinese herbs that can help Peyronies Disease. Do you agree with this and if so what are they?
Ans: We published a paper on Chinese herb called wogonin but we have no clinical experience. (see below)
2) Do you recommend the use of any traction devices to straighten and lengthen or will they cause further injury?
Ans: Vacuum device has been reported to cause Peyronie's disease. On the other hand, some companies are indeed trying to market penile stretching device. At this time, I cannot make any recommendation until there is better studies published.
3) When I see you in 6 months time, will you recommend an operation, if so, what type would you recommend, its costs ( so I can save up) and
is there any chance that the Peyronies Disease will reoccur/ worsen after the operation?
Ans: Yours is not a typical Peyronie's disease. It is a septal fibrosis after minor injury to the penis. If I recommend surgery, it will be minor procedure to correct whatever is bothering you at that time. It can recur if you injury the penis again in the future. Please see article # 2 below.
Wogonin suppresses cellular proliferation and expression of monocyte chemoattractant protein 1 in Peyronie's plaque-derived cells.
Wang Z, Lin G, Lue TF, Lin CS.
Department of Urology, School of Medicine, University of California, San Francisco, USA.
OBJECTIVE: To test the effect of wogonin on cellular proliferation and expression of monocyte chemoattractant protein 1 (MCP-1) in cells derived from normal and diseased tunica albuginea (TA), as related to Peyronie's disease (Peyronies Disease). MATERIALS AND METHODS: Cells with characteristics of fibroblasts were isolated from three tissue sources. Those from the plaque of patients with Peyronies Disease were designated as P cells, those from the adjacent, normal-appearing tissue as C cells, and those from the TA of patients without Peyronies Disease as N cells. These cells were treated with wogonin at doses of 0, 10, 20 and 40 micromol/L for 24 h or treated at a fixed dose of 40 micromol/L for 1, 8 and 24 h. Cell proliferation was assayed with a commercial kit, MCP-1 mRNA expression by reverse transcription-polymerase chain reaction, and secreted MCP-1 by enzyme-linked immunosorbent assay. RESULTS: Wogonin suppressed cell proliferation in a dose-dependent manner; the effect was more pronounced against P cells at 8 and 24 h. Wogonin down-regulated MCP-1 mRNA expression, especially in P cells. Wogonin suppressed the level of secreted MCP-1 by 59-88%. P cells, which secreted far more MCP-1 than N and C cells at 1 h, were suppressed by 88%. C cells were the least suppressed at all three times. CONCLUSIONS: Wogonin suppressed the proliferation, the expression of MCP-1 mRNA, and the expression of secreted MCP-1 in TA-derived cells. In most cases, the effect of wogonin was greatest against cells derived from the plaque. Wogonin appears to be a worthy candidate for preclinical trials in men with Peyronies Disease.
J Urol. 2007 Jan;177(1):179-82; discussion 183.
Links
Isolated septal fibrosis or hematoma--atypical Peyronie's disease?
Brant WO, Bella AJ, Garcia MM, Tantiwongse K, Dean RC, Lue TF.
Department of Urology, University of California-San Francisco, San Francisco, California 94143-0738, USA. panditah@hotmail.com
PURPOSE: Classically Peyronie's disease presents with penile curvature and/or pain, and is associated with a palpable penile plaque. We frequently examine patients with suspected Peyronie's disease ultrasonographically and have noted a subset of patients in whom we could identify only a circumscribed septal lesion. We identified characteristics of these patients. MATERIALS AND METHODS: Of our series of approximately 650 patients with Peyronie's disease 47 were identified with these lesions. RESULTS: Of the 47 patients 22 presented with penile curvature with or without accompanying or preceding pain. Of the 47 patients 17 had a significant history of trauma, although only had the classic stigmata of penile fracture. A total of 16 patients had no history of curvature, 7 presented with only penile shortening or focal lack of rigidity and 5 were incidentally found to have lesions during assessment for other complaints. Three patients presenting after trauma were noted to have septal liquefied hematomas, which we aspirated under ultrasound guidance. Followup ultrasound revealed minimal septal thickening. In 1 of these patients the hematoma was adjacent to more typical-appearing septal fibrosis. CONCLUSIONS: We theorize that these hematomas are due to septal fractures and may represent a forme fruste or possibly a precursor lesion of more typical septal fibrosis. Ultrasonographic evaluation may allow earlier identification and treatment of occult septal injuries or lesions and prevent subsequent fibrosis and its associated symptoms.
hawk : what is 'septal fibrosis' - and why did Dr L say it was not typical Peyronie's disease??
can you help me with this....
Cheers
Iceman, I'm not a doctor, but I believe "septal" refers to the center division that seperates your two corpora. It sounds like septal fibrosis would mean scaring in the middle of the penis, not on an exterior portion of the corpora. If you imagine a circle split down the middle with a line, the fibrosis would be on the line, not on the circle.
Nemo
Gents, as you may recall, my Uro only grudgingly agreed to put me on Pentox, and then only 1 a day, with one refill. So I'm about at the end of my two months' worth and he's not willing to refill, even though I've had no negative side effects. Frankly, I'm ready to look for a new Uro, but I'm not interested in shopping for Uros based on getting this one prescription.
I'd like to order Pentox or Trental from one of the online pharmacies, meaning overseas, I'm sure. Can anyone recomend one of these outfits that you've had a safe, succesful transaction with? I don't want to give a credit card number to some scam outfit.
Thanks,
Nemo
nemo: have you had any improvents/changes using Pentox??? Im at the end of my second month now and I just wanted to check on progress with anyone...
also has any one used SAN VasoFlow - Ive read a abit about it - has there been any positive results????????
Iceman, Nemo got it exactly right about the septum. The nasal septum divides the right and left side of your nose. The penile septum divides the right and left corporal chambers.
The link showing anatomy shows it well in the last of four images. That middle band of tissue running from top to bottom.
https://www.peyroniesforum.net/index.php/topic,106.0.html
Tim
tim - is that worse than having the standard Peyronies Disease?
Iceman,
Not sure if it is "worse". There are so many variables involved. If I had a simple nodule without deviation or an effect on erections, that would be "best" for me (I'd ignore it). If I had a fibrotic plaque with a deviation that had been stable a long time, that would be "best" - since I could get it fixed surgically. And so on. Best and Worst always vary.
I think that the fibrosis inside of the penis is not going to be fixable by surgery. That does not mean it is worse, though. It all depends on the funciton. If you can get it up, and it works, then there is not much of a problem. If it does not work at all, then it might require a VED and retaining ring, or eventually an implant. So haw bad it is "depends" - as always.
Tim
Tim
I have corporal fibrosis. Uro said my only option is VED and implant. To complicate things I also have venous leakage.
Implant surgery was aborted in October when the urethra was penetrated because of the fibrosis. The only way I can maintain an erection now is with a VED and VERY TIGHT constriction ring. :(
Fibrosis is side effect of injection therapy and peronies, mostly injection therapy according to Uro.
Iceman
Allow the peronies treatment at least 18 months before considering implant. Implant is the last resort. I'm lucky just over 12 years ago my peronies curve corrected but left the fibrosis and penile shrinkage. If you notice penile shrinkage use Old Mans VED treatment, it helps.
Good luck
Jackp
Guys, in reality it is ALL fibrosis. It may vary in character and location, but its still fibrosis. We KNOW that certain things work. They are not silver bullets, but they do have a positive effect. And I think they can be synergistic for people who really want to get meaningful results as fast as possible. The best options I see right now are VED, Pentox, ALC, Carnosine, Vitamin E and Mangosteen. And I see no reason why all of those can't be done together for optimal results. I would go especially heavy on the ALC and Carnosine because they have very few side effects and I believe are very likely to be effective at breaking down fibrotic tissue.
I would also add diet and exercise. There is much evidence that glucose plays an important role in non-age related fibrosis. A diet tuned to keeping glucose down will likely be very beneficial. And then there is exercise. Exercise can also be beneficial. It would be too much to try to list all the ways. But just for example, one way is the fact that adequate exercise tends to trigger angiogenesis throughout the body, increasing circulation AND having the effect of actually draining away the building blocks of fibrosis and delivering them to the liver where they can be broken down and eliminated from the body. - George
Hey George.
I've happily taken your advice in the past, and I'm willing to do it again. What the heck is Carnosine, and Mangosteen?
I'll try anything that isn't sketchy, or harmful.
AR
Quote from: ElsevierThe exact biological role of carnosine is not totally understood, but several studies have demonstrated that it possesses strong and specific antioxidant properties, protects against radiation damage,and promotes wound healing. The antioxidant mechanism of carnosine is attributed to its chelating effect against metal ions, superoxide dismutase (SOD)-like activity, ROS and free radicals scavenging ability . Either its antioxidant or anti-inflammatuar properties, we propose that carnosine ameliorates irradiation-induced lung injury.
LINK (http://linkinghub.elsevier.com/retrieve/pii/S0306987705006213)
Quote from: PubMedCarnosine is an endogenously synthesized dipeptide composed of beta-alanine and L-histidine. It acts as a free radical scavenger and possesses antioxidant properties. Carnosine reduces proinflammatory and profibrotic cytokines such as transforming growth factor-beta (TGF-beta), IL-1, and TNF-alpha in different experimental settings.
LINK (http://www.ncbi.nlm.nih.gov/pubmed/17220373)
Quote from: Diabetes JournalOur study suggests that carnosine or carnosine derivates may possibly be used to design new therapeutic strategies to optimize renoprotection in diabetes.
LINK (http://diabetes.diabetesjournals.org/cgi/content/full/54/8/2320)
Quote from: Medical News TodayThe carnosinase 1 gene produces an enzyme called carnosinase. Carnosinase inactivates the protective substance carnosine. Carnosine appears to prevent scarring from developing in kidney tissue and serves as a scavenger of damaging oxygen-free radicals. ... Freedman said that among people who are susceptible to kidney failure, "it will be important to evaluate whether the administration of carnosine or agents that inhibit carnosinase activity will protect diabetic individuals from the development of progressive kidney disease." ... He said that while carnosine is available over the counter in health food stores, it is possible that excessive carnosinase enzyme activity could prevent carnosine supplementation from protecting the kidney. As such, carnosinase blockers may prove to be more important.
LINK (http://www.medicalnewstoday.com/articles/60498.php)
Mangosteen is a fruit from Thailand. The peel or "pericarp" contains Xanthones which have a pronounced anti-inflammatory effect that produces no side effects as do most traditional anti-inflammatories. Mangosteen supplements are available and it is also available as a beverage at places like Costco. It is quite expensive but I have found that even in small amounts it is very effective. - George
Jackp
I think that the main problem with fibrosis of the septum is that it is hard to get at to repair. The problem with corporal fibrosis is that is the very tissue that is supposed to be working well for a standard Nesbit surgery (or any Peyronie's therapy for that matter) to work. Thus, if the chambers that fill with blood are fibrotic, then it is hard to imagine them inflating well.
The repair of that by surgery (implant) is a challenging operation and may require major reconstruction. You already have experienced some of the negative aspects of that! The anti-fibrotic medicines that George mentions all make sense, including Pentox.
George,
When you say something works ("effective") for you, what measures are you referring to? I am now taking the supplements tht we have discussed, (excpet I am not drinking Mangosteen - I am taking a Mangosteen supplement). I note that the progression of my left sided dent has stopped. But I had a major episode of the feeling tht it was getting worse (this is the kind of intuitive thing I have gained over the years that a doctor would scoff at). At that time, I hit the VED extra hard, and took Advil also. I noted some bruisability, which has resolved.
So overall, it is hard to document anything positive yet. Certainly no improvement (I will take a lack of worsening any day!). I recall that you induration seemed more evanescent than most folks (I have wondered if that had to do with blood flow or localized edema...). Is that one of the things that you use to measure what works for you? Or are you using other measures?
Tim
Tim, Its just really, really hard to try to figure out the effectiveness of any one substance or approach. I can only say that the ones a mentioned are the ones I am currently most impressed with in a practical sense. There are others that I really like as well, but these are at the top of the list. I also include the VED because, although I do not use it myself, it is just really obvious to me from the reports of all of those that ARE using it that it just works, regardless of what any highly regarded expert might say to the contrary. AND, in terms of the glycation issue, I can see a real rationale for WHY it works. That being that it tends to "open" the ECM allowing more opportunity for natural collagen turnover and increasing oxygenation of densely packed tissue. Ditto with Pentox. Although I don't see any posts saying I am using Pentox and now I am completely normal again, I also don't see any posts saying I have used Pentox for nine months and I am worse now than when I started. I see a number of posts saying I am not doing a whole lot about my problem and I AM far worse now than I was nine months ago. You get my drift here. Even a slow steady improvement is a godsend.
In my own case, I only use the supplement approach. And, in my own case, this approach is working to my satisfaction. I have not had any real flare ups. The worst would be that I would really stress my member and the remaining nodules would swell up PAINLESSLY and then fully retreat in less than twenty four hours. Those kinds of incidents before would cause significant pain and progression that would last for days and even months. Another thing that I find very encouraging, is that I have this several year old scar in my finger that was initially hard as a rock. Over the past eight months or so it has been getting progressively softer and "flatter". It is to the point that it feels almost normal. I think any old guy my age already has a lot of anomalies it his body. All of these are to me like the proverbial canaries in the coal mine. If together they are getting perceptively better, that is something I consider a good sign. And I have learned to ignore that day to day ups and downs. It is really the long term that counts.
At this point I have upped the dosage or ALC once and plan to up it again. And I will also be upping the amount of Carnosine. There is already at least one Carnosinase blocker out there, and it would be nice to see some of those show up as Carnosine synergists. But at this point I will cut back on some other things in order to be able to up the dose of Carnosine. I will let you all know how that works out.
As for Mangosteen, as I noted prevously, I have just found it to be a top notch anti-inflammatory, it just works for me. There is also research that shows one of its components, Garcinol, to have potential anti-fibrotic qualities. In fact a number of its components (Xanthones) have powerful pharmacological properties. But I will let you grok all of that yourself from the available research. - George
I suspect I have fibrosis of he cavernosa from bimix injections for ED following a prostatectomy. Under the advice and prescription on a very well known urologist I thought the injections were the greatest thing since sex and I would have been happy to use them for life. My urologist scoffed at the mention that ED injections can cause Peyronies Disease. It makes one wonder about some of these guys thought processes.
My suspicion that I have fibrosis of the cavernosa is based on the fact that i used injections and because I have felt little in the way of plaque, and because my dent began at the point of injections.
PS:I will likely move this and some of the other posts not dealing with oral treatments.
George999:
Glad to see that you mentioned VED usage as a viable therapy for Peyronies Disease. Any mention of its ability of helping gets the message to more and more guys.
One thing that has been "bothering" me about the therapy some guys are trying is this: They are using more than one approach at a time and not giving any one of them a chance to work for them. Some are using at least three or four as has been posted herein.
My belief is that one should only use one treatment or therapy at time and give that one time enough to develop results. If none are realized, then move on the second, third, etc. until they see some results. This would allow the individual to know what worked for him and what did not.
Your thoughts on this theory.
Old Man
Old Man,
I take a different approach. Since nothing has ever worked that well, why not throw the kitchen sink at it and see what happens? If nothing helps, then I am 6-12 months down the road and can say that A through P don't work and can move on to "Q". Otherwise, I move on to "B".
It is more than impatience. I am convinced that some techniques work synergistically. For instance, it has been shown that stretch of tissue inhibits TGF production in the lab. Based on that, I can imagine that the VED may inhibit TGF production - but that does not mean that I should fore-go Arginine or Pentox. If nothing works, I can move ahead faster.
If something does work, then I can start to reduce therapy to see what is essential and what I can do without. Unfortunately, I am not there yet in my Peyronie's care.
Tim
Tim
The treatment the uro used 12 years ago was Vitamin E 400 IU three (3) times a day and Potaba.
I remember taking Potaba for over a year, Dr. took me off when the curve corrected. And reduced the Vitamin E to twice a day. Took Vitamin E until the first of 06 when the cardiac doctor said it was doubtful it was helping my heart. 10/06 had to have a stent!
I have been on Plavix after the 1st stent 10/06 until about a week ago. I have developed a bad rash and spots on the back of my hands that had scabs on them. A week after quiting Plavix the spots went away and the itch is better. Still taking a whole aspirin a day.
I am considering going back to Vitamin E at 400 IU twice a day.
That doctor never recommended or mentioned a VED or anything for the penile shrinkage. The only comment he had was after a TURP (9/96) was "All I can do is make a girl out of you." I have switched Uro's about 2.5 years go, should have much sooner.
Jackp
Jack, In the past I have mentioned Aloe Vera soft gels on several occasions. I started taking them for a stomach problem some years back. Unexpectedly they CURED my severe heart palpitation problem. And I do mean cured it. The palpitations, which were severe, went away COMPLETELY within 24 hrs and didn't come back. After being off of them for some time, the palpitations didn't come back. But then, I resumed taking them at 2 per day because they have been shown to promote protein turnover in the body and I want to promote collagen turnover. But in looking into them further I came across this study:
Quote from: PubMed1: Angiology. 1985 Aug;36( 8 ):485-92.
Prevention of atheromatous heart disease.
Agarwal OP.
Five thousand patients of atheromatous heart disease, presented as angina pectoris, were studied over a period of five years. After adding the 'Husk of Isabgol' and 'aloe vera' (an indigenous plant known as ghee-guar-ka-paththa) to the diet, a marked reduction in total serum cholesterol, serum triglycerides, fasting and post prandial blood sugar level in diabetic patients, total lipids and also increase in HDL were noted. Simultaneously the clinical profile of these patients showed reduction in the frequency of anginal attacks and gradually, the drugs, like verapamil, nifedipine, beta-blockers and nitrates, were tapered. The patients, most benefitted, were diabetics (without adding any antidiabetic drug). The exact mechanism of the action of the above two substances is not known, but it appears, that probably they act by their high fibre contents. Both these substances need further evaluation. The most interesting aspect of the study was that no untoward side effect was noted and all the five thousand patients are surviving till date.
(LINK) (http://www.ncbi.nlm.nih.gov/pubmed/2864002?ordinalpos=26&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum)
This gets even more interesting because my wife has multiple cardiac stents. In a follow up exam, her thalium treadmill came up abnormal. (We suspect the test itself was flawed). The cardiologist wanted an immediate follow up with CT angio. Instead we chose to have her take the aloe vera and wait a year. The following thalium treadmill was grossly normal as was the one after that. She has since been shifted from annual follow up to two year intervals. So whether the initial test was flawed or not, the aloe vera has worked out well for her and the two subsequent tests have shown no problems. At this point I am looking at shifting to what might be a more potent aloe supplement that uses a dry freeze approach. I mention this now since this is something you might want to consider. If it does work for you, you should see the effects noted in the above study. In my case they showed up in my blood work in no time. ALL the cardiovascular related numbers got better.
As far as the Vitamin E is concerned, I would recommend that you make sure to take the full spectrum E only. The reason is that while Alpha tocopherol prevents oxidation, Gamma tocopherol prevents nitration which is also a destructive process. There is some speculation that taking Alpha tocopherol causes the body to indiscriminately dump Vitamin E, resulting in a deficiency of Gamma tocopherol. Another factor is that Vitamin E tends to deplete Vitamin K which is important in keeping Calcium out of the vascular system and in the bones. But in light of your potential clotting issue, I would hesitate to recommend Vitamin K supplementation. For sure keep taking the aspirin as it should be good for both the heart and the Peyronies. Those are my thoughts. - George
AR:
I am somewhat surprised that you would even think that I was advocating anything other than just trying to help. Sorry if I upset the applecart with my post. No, I am not a scientist, nor a representative of any company that makes drugs or other medical supplies. Have never worked for any such organization at any time in my life. My education does not even include college of any sort. But, over the span of my 30 years with Federal employment, I was given the opportunity to go to many courses that pertained to my current job while then employed. Also, I spent 37 and 1/2 half years with the military branches: U.S. Navy, U.S. Army Reserve, Air Force Reserve and finally the last 12 years was with the Navy Reserve. So, through these many years of military and civilian service I had plenty of OJT training as well as formal courses. In some respects, my education far exceeds book learning that I may have had if I had gone to a formal college.
All others:
My post was based on the experience that I have gained with my 50 plus years of Peyronies Disease problems. I tried several things all at one time, one at a time and a mixture of one at a time and several at at time. Nothing helped, so I finally gave up on any formal treatment until after my prostatectomy in 1995. I won't into my history since then, but none of the ED pills worked, so the VED was RXd for me and through it, I was able to control my Peyronies Disease to a point it is no longer a problem. I am not saying that throwing everything and the kitchen sink is not a good approach. But, how would one actually know which one of the items worked for the Peyronies Disease?
So, bottom line, I will not in the future address this subject again on any post. I will just let each and every guy do his own thing and let him see what happens. I will be glad to assist anyone at any time if called upon, etc.
Old Man
AR:
You are way off base. Old Man has done more than anyone else on this list to ease the burden of the members due to this horrible disease. I don't see him tooting his own horn, but if he did, I'd say he has a perfect right to do so. Just my 2 cents.
Mick
Old Man.
Please don't take my post the wrong way, as it was meant to be tongue-in-cheek.
Indeed, like you stated, the only way to find out if something works is to eliminate all the variables and test only that one thing against a "control" group, (that isn't getting that "one" thing...actually, I don't know how you would do a control with VED's)?
Personally, I'm desperate and willing to try pretty near anything I hear you guys talking about here, as long as it won't hurt me, and I wanna try it along with every thing else as soon as possible. My sense is that most of the fellows here feel this way, and I guess I was surprised by your "one treatment" stand.
From day one, when as a guest, I would read your posts (before I mustered up the courage to post myself), I've held you in high regards. I truly value your contributions based on your personal experiences, and I know everyone else does as well.
I'm sorry if my post didn't come out right.
AR
PS: See, I knew I felt a connection with you: my father was in the Submarine Service and saw action in WWII. My step-father was in the Air Force!
Old Man, I'll tell you what bothers me at times in terms of bad choices. Its the temptation that some are having in terms of finding a quick fix. The problem is that these tend to be the kinds of things that are irreversible. Surgery is one example. I would not argue that surgery is ALWAYS the wrong choice. I would only argue that a) it is irreversible. If it goes badly, it leaves you considerably worse off. AND 2) Surgery itself inflicts trauma and trauma is what started the whole thing in the first place. The surgery may in fact be successful, but then the Peyronies problem can re-occur due to the surgery itself. Another example is the thirst for collagenase. This is administered via injections and don't we have enough horror stories about the after effects of injections? Injections, once again, inflict their own trauma, and that can cause new Peyronies outbreaks. And I could go on. There are hormonal approaches and genetic approaches suggested, but both of these are rife with cancer risks. ONLY the glycation model is free of these obvious risks. And the glycation model would incline one to APPROPRIATE drugs, supplements, use of VED, diet, exercise, etc. (Note that I did not include traction. The real problem that I have with traction is that it is not self limiting like the VED. And the fact that it is not self limiting means that it is too easy to apply an inappropriate amount of tension and inflict more damage. So I view traction as not necessarily bad, but with some degree of suspicion.)
As for multiple approaches, the problem with trying things in sequence becomes "what if multiple approaches can be synergistic and produce significantly more than the sum of the parts?" So while I understand your point, I also think that we are not "doing research" here, there are others who are much more equipped to do that. We are simply trying to address our problem. At this point we have a pretty good idea of what things do work because their perceived effectiveness is vouched for by multiple posters and they tend to follow a common theme. But I do very much respect both you personally and your opinion on this subject. AND I do think it is important not to move quickly from one approach to another without giving any time to work. These are my thoughts. So lets not "roll up our cards and go home", but lets keep talking about these issues. I think they ARE important and we can move beyond what became an unfortunate exchange with what are I'm sure, unintended consequences in terms of the way the comments were understood. Everyone in this community has value and is needed, and we can't be in the business of hushing anyone up, but rather we need to work through these things and move on.
AND I would hasten to add, some here like Old Man have chosen to use ONLY one approach to dealing with Peyronies AND that DOES HAVE great value. From Old Man's experience we CAN KNOW that the VED is of tremendous benefit. There will always be those in our midst, who, for whatever reason, choose to concentrate on one approach. Their experience is VERY valuable in getting a handle on the potential benefits of those individual components. EVERYONE HERE is a needed and valued part of this community. Diversity is our strength! - George
Guys,
Here is a link to the FAQ section of an anti-aging site that promotes Carnosine http://www.antiaging-systems.com/qanda.htm#Carnosine. I couldn't post a quote from the page because it is copyrighted, but if you follow the link and scroll down you will see that a couple of doctors advise against taking more than 600mg of Carsonine in one day.
bodoo2u, Good find! Lots of good information on that page. - George
Thanks George, I'm glad I could help.
For those who are taking Carnosine and did not follow the link, you should know that doctors advise the use of Vitamin E with the substance. They said the E makes Carnosine more efficient.
I read on this forum somewhere about coconut oil - has anyone used this in the past and has it been effective??
Hey guys I'm new to the forum. I'm 27 and I've had this as long as I can remember. I've only found out that the condition had a name about 8 months ago and have done some reading on it since then. I've never had a "cracking" or "snapping" occur -- it's just been like that since I was a teen.
What's irratating is that I don't detect any sort of cartlidge-like mounds, fibers, bumps or whatnot. So is there even a non-surgical hope for me?? :-\
With that said...I certainly don't think any Vitamin E oil or lotion is gonna set me straight. I did what research I could and decided to buy Peyrotin and I just started today. Have any of you heard of it or tried it?
It's from Germany, it took four weeks to get here (with Pakistani stamps on it!!) and the pills have a silver coating that comes off with the touch. Get at me fellas.
Cresent.... welcome. I'm new here myself but will offer my $.02
If you have had this "as long as you can remember", then you might have a congenital deformity. Meaning you had it since birth, and not as the result of some later condition that developed. Congenital or not, it can still be frustrating. Just don't confuse treatments for Peyronie's Disease with treatments for congenital deformity. But I have read where there are similar treatments for congenital conditions. This site has a lot of information, and there are people here far more knowledgeable than I am. If you are not sure what your particualr condition is, my advice would be to see a urologist. Most can help diagnose Peyronie's vs. congenital..... then you will know better which course of treatment(s) to pursue.
Most of us feel that Peyrotin is a sham (fake) treatment - an internet scam. If it works, let us know!
A VED may be of help, as can traction - both are non-surgical and safe (if done right) and might help even a congenital curvature. We believe that some are helped by these two forms of stretching the penis - none of us have any information about an effect on a congenital curve.
Tim
i bought peyrotin - it took 1 month to arrive here and I know why - its manufactured in the Islamic Republic of Pakistan - as soon as I read that label on the bottle it went straight in the bin - they have a fake address in the UK to lend credibility to the product only - its a bloody big sham - those guys should be somehow reported and action taken against them...
Hello members, My name is Tony. I woke up with Peyronies Disease about a month ago. I am almost 61 years old. I am 90% sure that my Peyronies Disease was caused by trauma. About two months ago while having sex with my wife of 38 years I jammed my penis into her pelvic bone. I got a sharp pain and my penis hurt for a couple of hours. A month went by with no problem. Out of the blue I wake up and find that my erection is now shaped like a banana. I never heard of Peyronies until I did a Google search on "bent penis". I couldn't believe how many sites are out there trying to sell products to correct this problem.
The best site I have found that isn't trying to sell anything, but is concentrated on explaining the problem and dealing with it, is this forum. I have been lurking for 2 days and I have read hundreds of your post. I have decided to try the non prescription, oral supplement approach to repairing my bent penis or at least keeping it from getting worse. I am fortunate that I can still get an erection and have an ejaculation. I have already PM'ed OLD MAN and GEORGE999 for their valued advice. As time go on I'm sure I will be asking more questions. I will share any information that I may find that hasn't already been given here.
Thanks for this great forum to learn and discuss what is a very private matter.
Mod if this post is in the wrong section please move it and tell me where I should post general information.
Thank you,
Tony
Hi Tony:
I'm sorry to have to welcome you to the PDS forum, but Welcome.
It is indeed a "great" site. I "lurked" for over 2 months before gaining the courage to join in, so my hat's off to you. I started with the oral supplements as well, and as you know already, George is a wealth of information on that subject. And of coarse Old Man is great! Period.
I think you'll be asked if you've seen a Uro yet, as you didn't mention this. And you'll learn the threads and where to post soon enough.
Thank you for your share, and my best to you.
AR
I have a question about when to take Supplements. I just purchased Aloe Vera Gels, Vit E, L-Arginine, Maca, and Acetyl-L-Carnitine has been ordered ordered. I am also taking prescription drugs for a heart condition (plavix) and diabetes oral Medication (Glipizide ) I take the plavix in the morning and the Glipizide at night and I also take a Multi vitamin and fish oil. Would it be OK to take the supplements for my Peyronies with these other medication or do I have to take them alone at another time of the day?
Thanks for your help,
Tony
Tonyespo
Be careful!! I would not take Vitamin E and Plavix both. I was on Plavix for a year and a half and just stopped because of a rash.
Both are blood thinners. Talk to your heart doctor before taking Vitamin E and Plavix together. Mine said NO!
The others I do not know.
Good Luck
Jackp
Regarding Vitamin E, I believe it is the Alpha Tocopherol form that is responsible for "thinning" the blood via the Vitamin K pathway. I don't think Gamma Tocopherol presents the same issue, but I don't know for sure. There ARE Gamma Tocopherol products available that have next to zero Alpha Tocopherol content. My MO if I was the one on Plavix would be to request to try Gamma T and then have a blood test to see if it was creating a problem. I wish there were some documentation out there on this issue but I can't seem to locate anything. But as Jack advises, I would definitely be cautious on this. But Gamma T is NOT Alpha T. They are two different substances with divergent effects. But unfortunately doctors universally interpret "Vitamin E" as being Alpha T and most of them no absolutely nothing about Gamma T even though most emerging research credits Gamma T with being a far more beneficial nutrient than Alpha T. - George
PS - Fish Oil is ALSO a "blood thinner". Flax Oil provides the same benefits and I don't believe it has the same "blood thinning" effects.
Thanks Jack and George. I have stopped the Alpha E and I'm going to hold off on taking any E until I am certain it won't cause a problem with the Plavix. I had a heart attack in 2004 and have 6 stints in my heart so I have been on Plavix since that happened. Thanks to everyone for their replies and well wishes. I would still like to know if you can recommend what time of day I should take my supplements.
Thanks,
Tony
Hi, I see all this stuff about "full spectrum" vitamin E, but I cannot figure out exactly what that means or which one I should get. I currently use Central Market Vitamin E. It doesn't say that it is full spectrum, but it says that it is 100% natural in a base of d-beta, d-gamma, and d-delta tocopherols. Should I opt for some of the full spectrum stuff or is the Central Market stuff good enough? I just finally found some stuff online that said full spectrum on the bottle that i hadn't seen before, so maybe i will check for that at the grocery store.
below i was reading about Carnosine but it sounds more like it's good to take right when the injury takes place! ...or am i wrong?
it's been 5 years for me. i'm looking to buy some supplements. give it a good round.
what's a recommended set of oral and probably natural things to take?
i recently got a VED and so it will be a little while before i can really report back on that...
what is ALC???
i keep reading about it as part of treatment but i don't know what it is...
its Acetyl L- Carnitine
Years ago researchers concluded that only the Alpha Tocopherol form of Vitamin E is important because Alpha Tocopherol is the ONLY form that the human body is capable of storing. Over time that conclusion became a sort of common wisdom in the medical community. But recently new discoveries have been made:
1) Supplementing with Alpha Tocopherol causes the DEPLETION of the levels of some and perhaps ALL of the other seven Tocos in the body.
2) Supplementing with ANY of the other seven Tocos causes levels of Alpha Tocopherol to rise INDEPENDENT of Alpha Tocopherol supplementation.
3) Continuing research is showing the other seven Tocos to be just as important and perhaps more important nutritionally than Alpha Tocopherol.
4) A lot of the benefits of the OTHER seven Tocos are related to things like Nitric Oxide metabolism and thus are potentially very important in dealing with issues like Peyronies.
Based on the above points, I am moving to supplements that provide very little Alpha Tocopherol and substitute large quantities of the other Tocos. For example, I am now taking 1200mg of Gamma Tocopherol with only 200IU of Alpha Tocopherol. In any case, READ THE LABELS if you want to know what you are getting. Anything saying simply "mixed tocopherols" does not supply much other than Alpha Tocopherol. Those products supplying significant quantities of the other Tocos will list the amounts in milligrams on the label. I am currently using these two products: Jarrow Gamma E (http://www.iherb.com/ProductDetails.aspx?c=1&pid=205), Jarrow Toco-Sorb (http://www.iherb.com/ProductDetails.aspx?c=1&pid=137) - George
thanks George and Iceman!!!
i'll get these and try them out... :)
Has anyone been taking pentox consistently and seem any results from it? If so please list how long you've been taking it and if you've seen any improvments or not, please be specific, thanks!
comeback
been on pentox for 2.5-3 months now and its a bit hard to say - at least its nor getting worse...
I'd echo the below post. I didn't really have a good or bad experience with it, so it 'may' have been doing some good - nothing breathtaking though.
Correct me if I'm wrong, but I think the general view appears to be that pentox is most likely very useful if you start taking it directly after an injury to the penis. The problem being that when the average person initially receives such an injury, they are likely embarrassed and know nothing about peyronies to begin with - so take a 'wait and see' approach and miss a good window of opportunity to start using such treatments.
In a reoccurence of injury I would argue that pentox can play a valid role, and i'd be hesitant to say that it plays no role at all in a well rounded ongoing therapy. I do have concerns that it may lower the immune system though.
Dr. Lue speculates in his initial report that it may be of most value for those in whom the disease is slowly progressive, or when it will not become stable. He thinks it may be of less value to those who are stable with a calcified lesion.
Tim
Is there any way of establishing whether or not the disease is stable other than our personal observation? It would be safe to say no change is stable but who is in that category with this disease? I have a lump that is as big as it has ever been but I can't say if it is stable, getting better or getting worse. I can say that a year plus of VED and 3 1/2 months of Traction has improved on some of the lost size and has also helped straighten the penis to the point where I can now have sexual intercourse.
I have Pentox but I'm currently not taking it. It really bothered my stomach and for some reason, whenever my stomach is upset I get a lot of cardiac arrhythmia. So I don't want to take Pentox unless there are likely benefits due to the Pentox side effects for me.
Two questions:
1. How do we define stable peyronies?
2. Those of you on Pentox, do you have stomach issues and if you do, how do you address?
I must say that I do use Thackers formula and it does take the pain away when its imflammed - it really eases the pain
I'm sure this has been asked before but....has anyone or do you know of anyone who has been completely cured of peyronies? Why do doctors say the condition could resolve itself if it never does?
Hornman
In my case the curve corrected and the plaque went away but the effects did not. That was over 12 years ago.
I know you did not want to hear that.
Jackp
hornman:
I have had Peyronies Disease for over 50 years now. As far as I know, there is no one that has said they were "cured" of Peyronies Disease. I still have a small indentation where the plaque/nodules were located. My penis is as straight as it once was and I have regained lost dimensions.
Most everything was tried for a cure, but nothing helped. Finally, I was prescribed a VED for ED and while using it for that I discovered that it also helped with my 45 degree curve downward and 45 to the right.
VED usage seems to be one of the best methods at the moment for help with Peyronies Disease.
Old Man
oldman - have you ever used pentox??
Quote from: jackp on April 30, 2008, 10:36:56 PM
Hornman
In my case the curve corrected and the plaque went away but the effects did not. That was over 12 years ago.
I know you did not want to hear that.
Jackp
What "effects" remain? Shortening and/or ED?
For me, if I could get rid of the plaque and the curve I'd be pretty happy.
Ptolemy
Remaining effects of Peronies
Shortening, and ED followed by Venous Leakage and finally fibrosis in the corpora's.
Unfortunately I did not get introduced to a VED until 10/06 after heart stents. Then it was for sex. I thought if a little is good a lot is better, WRONG. I caused a bruise that took weeks to get well.
After the failed implant of 10/07 I found this board and OLD MAN got me on the right track, thanks. I have slowly gained back some length, and helped the corporal fibrosis. As long as it has been I do not believe I will ever get all the loss back, but, the wife and I manage well and have fun with what we have.
Good Luck
Jackp
Iceman:
No, I have never used Pentox. There are several names for it, so if you are planning on using it, look for the best product you can find. There are generics so be careful and get the right one. My main therapy that did any good has been the VED.
Old Man.
old man - couple of questions:
1) because I am still during the inflammation ( early stages) is it safe to use VED or will this further create more problems
2) I didnt know that there was more than i Pentox - I just went to the pharmacy and gave the guy the prescription Dr. Leu gave me - is this the best one?
thx
Pentox (Pentoxifylline) IS the generic name. Trental is the patented product. - George
george - so am I taking the right stuff and also I did read in one of the threads that there is perhaps a new drug coming on the market - have you heard about this??
Iceman, There are lots of new drugs coming on the market. Are you asking if there is a new version of Pentox coming? That I doubt. Nemo mentioned that his uro gave him a timed release version of Pentox, which makes sense (though his doc only wanted him to get one per day). George has talked about a new drug coming that is a p53 modulator that is tissue safe - but otherwise not sure what you're referring to. We talk about new drugs all the time here, in lots of threads - you may have to narrow it down!
Tim
Iceman:
As far as I know, there is no reason why you should not use the VED during that stage of Peyronies Disease. However, as has been said many times on this forum, please use caution and to not overpump the vacuum pressure. Use low pressure, fewer cycles until you are sure that you can add a small amount of vacuum as your penis gets "used to" the pressure. Caution is the watchword in any VED therapy.
This is a case where less is better than more.
Old Man
old man - why do I still have pain??? its been constant for 2-3 months now without let up and Im on all the wonder drugs - pentox ACL etc... HELP!!!!!
Iceman:
You are probably still in the inflammation stage of Peyronies Disease. The pain usually goes away after extended periods of time from the onset, etc.
Just keep on doing the things you are doing with extreme care and not overdo any traction or VED therapy you are doing.
Caution is always the best way to go with Peyronies Disease so as to not do further damage.
Old Man
Iceman, There is NOTHING that you can "throw" at this disease to make it go away quickly. At best you can bring it to a halt and PERHAPS cause it to SLOWLY retreat. Any progress you will see will occur over a period of monthS. There are NO "magic bullets" at this point. This is the reality. As Tim pointed out, there are a LOT of possibly relevant new drugs in the pipeline.
Question. It seems like most of you guys advocate to not give up or take a break away from sex when dealing with this disease. Shouldn't we abstain until perhaps the inflammation in the beginning stages subsides? Wouldn't this promote healing?
Hornman
Do Not Take A Break From Sex! IHMO
Doing so will cause the corpora's to have fibrosis. The penis needs daily exercise to keep healthy. Take it easy and do not real rough and you should be fine.
My$0.02
Jackp
This is really the "common wisdom" when it comes to Peyronies. Its been "injured" so don't use it or you will make things worse. But the reality is, if you don't use it, it WILL get worse. You just have to use it wisely. This is much the same as when they operate on you in the hospital and leave a big incision behind. One would think, it just makes sense, that you need to rest and take care of yourself so things can heal. But research has shown that is not the case and that is why the mean nurse shows up just hours after the surgery to walk you down the hall. It is not an occasion for a major workout of course, but you DO have to use it. - George
A company that is promoting a Carnosine patch as more effective than capsules says that their patch sends the supplement directly to the cells, which I doubt, and that it's more effective than oral supplementation because the latter provides only minuscule amounts in the blood after 30 days.
What do you all think about that claim? Are there any scientists among us who can validate or refute that claim?
Personally, I have been taking Carnosine for nearly 30 days and it's already making my skin look healthier. Of course, it's way too early to determine if it's having an effect on my scar tissue/plaque, but hopefully time will tell. There is something about the literature on Carnosine that is confusing to me:the fact that it slows cell replication and makes them live longer. Are we, as Peyronies Disease sufferers, not hoping to speed up the death of old, damaged cells in our plaques and have them replaced with new ones? Then again, the literature also says that Carnosine turns old cells young again, so maybe that's also a good way to rejuvenate our members.
And lastly, I read a site that said people over 40 should supplement their diets with 1,000 mg a day of Carnosine. Can that be harmful? It actually sounds logical to me, because as Peyronies Disease sufferers we have damage/wounds that we are trying to heal.
Can anyone provide feedback on this?
Bodoo
This is the link to a PDF whose authors claim that Beta-Alanine supplementation will increase Carnosine levels in the blood more effectively than Carnosine itself, because most of the Carnosine we ingest orally is destroyed in the gastrointestinal tract.
Although these don't appear to be the same marketers, I realize they are trying to sell a product. But I also wonder if what they are saying is true. If it is, would we be wise to supplement our diets with Beta-Alanine to better treat Peyronies Disease?
http://www.aenutrition.com/IXL%20%20BA%20MD%20article.pdf
george 9999 : if you say theres no magic bullet, then how come ( with all due respect to you ) my uro has said that there is a 30% possibility that it will heal itself? So if I am taking Pentox + ACL and others shouldnt this help me cure this rather than slow it down or halt it?
Quote from: bodoo2u on May 02, 2008, 11:25:48 PMA company that is promoting a Carnosine patch as more effective than capsules says that their patch sends the supplement directly to the cells, which I doubt, and that it's more effective than oral supplementation because the latter provides only minuscule amounts in the blood after 30 days.
What do you all think about that claim? Are there any scientists among us who can validate or refute that claim?
This certainly sounds interesting, but I am always very suspicious regarding transdermal claims. The big question is whether their methodology is capable of getting the product into the tissues in the first place. We KNOW that the transdermal process works. What we don't know is the effectiveness of the delivery system their particular patch is using. So its interesting, but I'm not one who would be willing to shell out money for it. Carnosine is pretty much a commodity substance and I would buy it for the best price I can get and take it the old fashioned way. - George
Quote from: bodoo2u on May 02, 2008, 11:25:48 PMPersonally, I have been taking Carnosine for nearly 30 days and it's already making my skin look healthier. Of course, it's way too early to determine if it's having an effect on my scar tissue/plaque, but hopefully time will tell. There is something about the literature on Carnosine that is confusing to me:the fact that it slows cell replication and makes them live longer. Are we, as Peyronies Disease sufferers, not hoping to speed up the death of old, damaged cells in our plaques and have them replaced with new ones? Then again, the literature also says that Carnosine turns old cells young again, so maybe that's also a good way to rejuvenate our members.
If you have Peyronies, you WANT to make your cells more healthy and youthful. That is because there is nothing really wrong with your cells. The problem is in the extra-cellular matrix OUTSIDE of the cells. It is due to damaged extra-cellular protein, NOT damaged cells. Most of our body is actually composed of non-human cells and non-living protein. Peyronies occurs due to damage to the non-living protein. We need to help our cells protect their external coat of protein from damage and stimulate them to "shed" and replace this damaged protein. Carnosine can assist in that process. One can picture Carnosine's role as being like a protective coating of Teflon for the protein that protects it from being gummed up by glucose and other foreign substances. - George
Quote from: bodoo2u on May 02, 2008, 11:25:48 PMAnd lastly, I read a site that said people over 40 should supplement their diets with 1,000 mg a day of Carnosine. Can that be harmful? It actually sounds logical to me, because as Peyronies Disease sufferers we have damage/wounds that we are trying to heal.
Personally, I am currently supplementing with 500mg a day. I really don't thing 1,000mg would be necessarily harmful. As with anything else, what might be a harmful amount for one person might be very beneficial for another. Carnosine levels vary radically from one person to another. Some people naturally have a lot of it and others are very deficient. There is evidence that being Carnosine deficient may be a risk factor for Peyronies and other similar diseases. Obviously, a deficient person could tolerate a lot more supplementation than a person who is not deficient. So in all of these things, I simply try to be vigilant for side effects. If I observe something weird going on, I try to find out which supplement might be causing it and then try reducing the amount of that supplement. The one issue that would be a huge red flag is hives or other allergic symptoms. Anything like that should be taken care of immediately since it can be life threatening. I have only had one problem with that so far and it was with Resveratrol of all things. But I think the problem was actually with Knotweed. In any case, I quit the stuff and am now aware that I am allergic to it. - George
Quote from: bodoo2u on May 02, 2008, 11:25:48 PMCan anyone provide feedback on this?
Bodoo
Quote from: Iceman on May 03, 2008, 01:48:09 AM
george 9999 : if you say theres no magic bullet, then how come ( with all due respect to you ) my uro has said that there is a 30% possibility that it will heal itself? So if I am taking Pentox + ACL and others shouldnt this help me cure this rather than slow it down or halt it?
First of all, I respectfully question from where your uro got his 30% figure. Did he just pull it out of the air or is it something that he just heard somewhere? I would really like to see any research that would back up that claim. Until then, I really don't believe it. I am just amazed at the number of myths that surround Peyronies even within the medical profession. Its like the degree of confidence that some practitioners seem to put in Vitamin E. Usually medical practitioners are obsessed with factual data, but with Peyronies much of that scrupulous attention to facts seems to get thrown out the window. As for Pentox, ALC, and all the rest, sure they can be helpful, but that is far different from the concept of a "magic bullet". All of these can help incrementally over time (a LOT of time). There is NOTHING that you can take that will cause you to be "healed" in a matter of months or even years. There are things you can take that will prevent you from getting worse and perhaps even make you better. But nothing that has been identified thus far that can be marketed as a "cure". So if someone tells you they have a "cure", watch out, they are just after your money. Here is some useful background on the molecular process underlying Peyronies and what is being done in the medical field to address it: Background: Glycation and Crosslinking Proteins (http://www.legendarypharma.com/glycation.html) - George
Iceman
I do not believe there is a "magic bullet". That being said, over 12 years ago when my curve appeared and the Uro said I had Peronies. Put me on Vitamin E and Potaba.
About 18 months later the curve was gone but the effects remained. Loss of size, then ED, Venous Leakage and Fibrosis in the Corpora's.
I have tried all the ED treatments. I was one of the first to get Viagra when it came on the market in 98, then Levetria and Celasis. Even tried something I do not remember the name of in Mexico that the Uro said may help. When the ED worsened and had a Color Doppler went to shots. First PGE1 (Edex) then trimix. No help.
To make a long story short. After heart stents and delayed implant new Uro suggested the VED and had it fit in his office. Used it all wrong. After the failed implant 10/07 found this site and Old Man let me know the right way to use the VED. Seeing a new Uro 6/08 about retry on the implant.
IMHO there is no magic bullet, what works for me might not work for you. Doctors have not found a cure yet. I believe that I will always have the side effects of Peronies.
My $0.02
Jackp
Quote from: bodoo2u on May 02, 2008, 11:44:48 PM
This is the link to a PDF whose authors claim that Beta-Alanine supplementation will increase Carnosine levels in the blood more effectively than Carnosine itself, because most of the Carnosine we ingest orally is destroyed in the gastrointestinal tract.
Although these don't appear to be the same marketers, I realize they are trying to sell a product. But I also wonder if what they are saying is true. If it is, would we be wise to supplement our diets with Beta-Alanine to better treat Peyronies Disease?
http://www.aenutrition.com/IXL%20%20BA%20MD%20article.pdf
I have previously addressed this issue here: Re: Beta Alanine v L-Carnosine as treatment for fibrosis ... (https://www.peyroniesforum.net/index.php/topic,22.msg12540/topicseen.html#msg12540) Use caution. - George
You are definitely "The Man". I knew I could count on you to set the record straight for me. I really appreciate what you and the other knowledgeable forum members do for us here. I know this is an oft-repeated line, but I sure wish I had found this forum when I was first diagnosed. My life might have taken a straight and not-so-narrow path. -Bodoo
Quote from: George999 on April 28, 2008, 10:10:32 AM
Years ago researchers concluded that only the Alpha Tocopherol form of Vitamin E is important because Alpha Tocopherol is the ONLY form that the human body is capable of storing. Over time that conclusion became a sort of common wisdom in the medical community. But recently new discoveries have been made:
1) Supplementing with Alpha Tocopherol causes the DEPLETION of the levels of some and perhaps ALL of the other seven Tocos in the body.
2) Supplementing with ANY of the other seven Tocos causes levels of Alpha Tocopherol to rise INDEPENDENT of Alpha Tocopherol supplementation.
3) Continuing research is showing the other seven Tocos to be just as important and perhaps more important nutritionally than Alpha Tocopherol.
4) A lot of the benefits of the OTHER seven Tocos are related to things like Nitric Oxide metabolism and thus are potentially very important in dealing with issues like Peyronies.
Based on the above points, I am moving to supplements that provide very little Alpha Tocopherol and substitute large quantities of the other Tocos. For example, I am now taking 1200mg of Gamma Tocopherol with only 200IU of Alpha Tocopherol. In any case, READ THE LABELS if you want to know what you are getting. Anything saying simply "mixed tocopherols" does not supply much other than Alpha Tocopherol. Those products supplying significant quantities of the other Tocos will list the amounts in milligrams on the label. I am currently using these two products: Jarrow Gamma E (http://www.iherb.com/ProductDetails.aspx?c=1&pid=205), Jarrow Toco-Sorb (http://www.iherb.com/ProductDetails.aspx?c=1&pid=137) - George
Hey, thanks for the information, George. I'd like to ask the other members of this forum: is this generally the consensus here that everybody follows? it makes sense to me. my current E is like you said "mixed toco"s. I will purchase this Gamma E 300, but the other one you cited is out of stock :(
If anyone else thinks they have an optimal regimen of the types of E to take, please do state which ones it is, since it can be hard to navigate the different brands online to find the best one.
Also, many have mentioned that you need to check your bloodwork frequently if taking excess E. But how does one do this? I have had just one bloodtest, and it required a prescription. How could I check this more frequently? Would I have to tell the doc "oh I am taking over 1000 mg of E every day". I don't think many docs are going to like that.
jackisback:
That is a good question as to how you can get doc to get blood tests for you. It is probably based on what insurance plan you have, and, if you are on Medicare in the USA or whatever your insurance plan will allow for bloodwork.
I have Medicare plus two other supplemental plans and they pay just about all expenses for my medical needs.
Suppose that you could tell your doc that you are taking E, just don't tell him how much. But, you understand that you need to have the check to preclude a toxic buildup in your blood stream. Most docs will comply with you when you work with them.
Old Man
Jack, Vitacost has the Toco-Sorb product in stock (Jarrow Toco-Sorb (http://www.vitacost.com/Jarrow-Formulas-Toco-Sorb-formerly-known-as-Toco-Life)). They also have a similar product by NSI (NSI Tocomin SupraBio Palm Tocotrienol Complex (http://www.vitacost.com/NSI-Tocomin-SupraBio-Palm-Tocotrienol-Complex)). - George
Hi everyone,
I know some here on the forum (including myself) take Maca for libido raising purposes (among other reasons) and by chance I stumbled across some info that seems a bit worrying.
It seems that Maca may raise levels of Insulin-like growth factor -1 (IGF-1) according to this study: http://tinyurl.com/69535k (http://tinyurl.com/69535k) and a few other references I have seen online, though I admit to not being a doctor/researcher and not thoroughly understanding these studies.
Whereas apparently there are some studies that show IGF-1 can extend lifespan and rebuild damaged joints, according to http://tinyurl.com/67h9sd (http://tinyurl.com/67h9sd) "Elevated levels of circulating IGF-I have consistently been associated with increased prostate cancer risk. "
Does anyone with a more thorough knowledge of the subject have any insight into this?
TS
Linus Pauling Institute Report (http://lpi.oregonstate.edu/ss03/vitamine.html)
University of California Berkeley Report (http://www.ncbi.nlm.nih.gov/pubmed/11722951)
Life Extension Magazine Article (http://www.lef.org/magazine/mag2006/apr2006_report_gamma_01.htm)
jackp - thank for your reply - do you think that if you had taken pentox 12 years ago when first diagnosed with Peyronies Disease you would not have have these further complications? What Im trying to ascertain is,. do you feel that medicine has come along a bit further and is a bit more sophisticated in its dealings with Peyronies Disease; and I am particularly referring to pentox and ACL and L arginine etc.
Thx
Iceman
I can not give an honest answer as to new treatments. The one thing that I wish would have happend is that the doctor had let me know what to expect.
If I knew then what I know now I would have been using the VED from the start.
I also would have had the implant when first diagnosed with Venous Leakage, and not used shots for ED.
Hind sight is a wonderful thing????
I keep looking to the future. Looking at implant doctors and trying to make an informed decision on which to use or let the original doctor retry. A tough decision!! Have an appointment June 3 with another implant doctor whose bio was on the AMS web site.
How long have you had Peronies? If less than 18 months you have nothing to loose trying todays meds. I got lucky in a way that the curve corrected, but da## it left all these side effects.
Use the VED like Old Man says. It can save you from loss of size, and other side effects. IMHO
Lots of Luck
Jackp
jackp - ive had Peyronies Disease for 5 - 6 months now - but I am a little reluctant to use VED. Firstly my uro said not to use this and secondly I am unsure of how it works and the benefits versus the negatives - can you advise please..
Thx
Iceman:
First, this post should be under the VED topic and Hawk may move it there after a few days.
Now, about VED usage from the start of observing Peyronies Disease symptoms. Most uros/doctors are not familiar with VED usage and its effects on Peyronies Disease symptoms. After many years of trying just about everything, I discovered a secret about VED usage. If used properly with extreme caution and good judgement, it can and will help most Peyronies Disease cases. There is little danger in causing further damage to one's most valuable prized body parts if it is used in moderation and not causing pain or discomfort while using it.
There are many of us on this forum that have had at least some success with VED usage. I can understand your caution in not using it since your doctor would not recommend its use. However, my personal uro has had many years of VED therapy for her patients in private and VA hospital practice. She maintains that proper use of it can and will help most Peyronies Disease sufferers. She is responsible for me trying a modified protocol and it proved very successful for my case.
So, you might want to solicit the advice of a second opinion from another uro as to whether or not it would be advisable to use the VED.
If you have any questions about its use and how to, etc, let me know and I will be glad to help in any way possible.
Old Man
Has anyone out there had any success with Neprinol ?? - I originally bought 4 bottles and have gone through 2 of them in the past 3 months - it would be great to get some feedback from any people out there...
As one who went through a lot of Neprinol, I would have to say that it is worthless when it comes to treating Peyronies. It was definitely helpful in curing my chronic bronchitis, but it did nothing beneficial for my Peyronies. At this point, I have some of it left which I will eventually use up and I will not be ordering more. I do NOT recommend it for Peyronies. - George
Iceman
I can only agree with Old Man. Most uro's do not have a clue at least mine did not over 12 years ago. Mostly interested in cases where he could make the big bucks. I can say that now that I have seen at least two others.
I do not know if the curve would have corrected without the Vitamin E and Potaba or not. I have to give him credit for putting me on it and God the credit for the curve reduction.
I was given the prescription for the VED for ED and not Peronies, but that was over 10 years after the first Peronies symptoms.
I can not help but say if it is not good for corporal fibrosis, like the uro said, why would it not be good for Peronies?
A second opinion is always a good idea.
Lots of Luck
Jackp
Iceman,
I don't believe that 30% of sufferers of peyronies disease will heal on their own, I simply don't believe it from all the people I talked to. As far as the VED, I did use it and it will enlarge your penis while you use it, the effects lasted for me for about a month after I quit using it. It did seem to help my erections "fill up," the key is to be light with the pumping and not overpump your dick! I remember the first time I tried it, I put the pump down and didnt like it. I then picked it up weeks later and got used to it. I'm getting ready to go back on a course of pentox as well.
comeback
comeback kid - you said youre going back on pentox - why did you give it up and did you have any success with it???
Iceman
I need to proof what I wrote last time. What I ment to say was.
If a VED is good for corporal fibrosis why would it not be good for Peronies!
Jackp
Guys,
After 14 months, my peyronie's has stabilized, the pain and discomfort which comes with this disease is gone, is there any benefit in continued use of pentox?
Thanks,
Jayhawk
jayhawk - how long have you been pain free?? - is there any bend remaining or has it cured itself since the disease has stabilised- ie..whats the state of the old fella..
Iceman,
I still have a curve, up and to the left about 20 degrees and I can still feel the plaque, but no pain. The curve has improved, as well as the firmness of my erections.
Jayhawk
JayHawk
First off, I am so glad for you. What you are left with sounds like better than you thought might be the case. Funny how life can change and what seemed intolerable, later can seem great. a 20 degree curve without ED is a lot better than it could be.
I know of no data to really guide your hand. I note that one patient in the medical literature went for two years, as he saw continued improvements and wanted to keep going. It seems reasonable to go a bit longer to see if you can gain any more back - but for how long? Just guessing, I thin that if six months of therapy continue without firther gains, then that is it. OTOH, if stopping leads to worsening, then I would not hesitate to restart it.
Are you using the VED with your use of Pentox? That might lead to further gains in angulation or length (as might also using a traction device).
Tim
Tim,
Just started the VED, will give it a go and keep using the Pentox.
I guess my question is about possible side effects of Pentox with long term use? if there are none I will keep using for a few Months and see if I can notice anymore improvement.
Jayhawk
I had to give up the pentox cause I got a virus and had to keep my immune strength at full throttle to battle it off, it was a skin virus. It has finally cleared up and I'm ready to go back on pentox. I like jayhawk also saw increased firmness in erections, better quality all around and my flaccid lenght was bigger. I was doing ved for some of the time i was on pentox, then i quit the ved and kept taking pentox for at least 9 months. After i had to quit pentox I figured my penis would go back to being bad again but it did not. It has stayed pretty good now. Now i'm fired up and ready to go, i got so much pentox its not even funny, i got bottles of it. I didn't wwant my prescription to run out, so i just kept getting it and not using it. It is still good though. I had absolutely no side effects from pentox, except jittery legs in the beginning, but that went away after awhile. If it has helped you i wouldn't quit it, I would stay on it and just keeping it, it is proven to be very safe unless you have a pre-existing condition. Dr. Lue has many studies that show it works, just keep taking it, take it longer than six months, you need to be on it like a year. It takes awhile to work and kick in, i think some people give up to early. I'm getting ready to get on it again.
Comeback
comebackid - ive been using pentox for 3 months now and there are no side effects and Im quietly confident its working - i originall bought neprinol and natto so i am taking these as well so I dont feel like I am wasting my money ( im also on ACL + L arginine) - do you think this is too much of a cocktail of medicine???
Also, at what stage did you notice improvement using pentox ( after how many months??))
old man - thanks for your reply - I really think you are wonderful in helping so many people - youre a champ
Hey comebackkid - good to see you again (once I figure out who you are with all the name changes - good thing that old posts get their name changed too). It sounds like some good stuff is happening. I hope that has buoyed your spirits.
Tim
Its good to see that some of you are seeing some positive results with Pentox. I am absolutely convinced that Pentox works. It can only work slowly since its effectiveness is limited roughly to the rate of collagen turnover, since it cannot repair existing damage, but can only prevent new damage. This is very important because when collagen "turns over" within an affected area, the surrounding damaged tissues and the cytokines they emit will cause the new tissue to be damaged very quickly. This is what Pentox prevents from happening. And as new undamaged protein is slowly added, affected tissues will gradually regain flexibility. Its a frustratingly long process, but it is possible. I am happy for you all. Thank you so much for sharing. Hopefully many more will benefit from Pentox. - George
George999 - I certainly believe that medication-wise pentox is perhaps the most powerful weapon in Peyronie's sufferers arsenals. It's just such a shame that knowledge of the condition is so very limited, and culturally those with intimate injuries tend not to seek immediate help. Not to mention that urologists are often in the dark about even some of the treatments that are regularly discussed here.
Imagine the /pre-cautionary differences between someone, who following penile injury, is just told to 'go home and see how it goes' only to see their condition worsen, compared to someone immediately starting meds, VED and gentle traction as a preventative measure. I think there would be a world of difference with their end result.
Hello,
I am also a new sufferer of this disease or whatever you call it, and has recently experienced curvatur to the left, along all the other symptoms related. The doctors appointment is not before a month from now, and i am convinced that there wont be any conclusions from that meeting. However, i believe that i probably find myself in the early stages, and would like to do something about it.
What do you gentlemen in this forum suggest i should do to stop/treat this problem in effective way, which maybe could make a difference in the end as you state?
Just my view:
I would suggest that you immediately start on: Vitamin E - Pentox - Acetyl-L-Carnitine (don't make the mistake of buying L-Carnitine - make sure it's the 'aceytl variety). I'm not entirely sure how the health system works in the states, but you really should try to get hold on pentox.
and begin using a VED and maybe even start very light traction.
With all of those tools in your arsenal, you should find yourself in a better position than you otherwise would. Having to wait a month for advice that, in my opinion, will not provide you with anything of additional value to what I've mentioned is not the best start. I think, as you're currently in an active phase of the condition, you should act as soon as you can.
For are more sounded view of the condition and treatments, check here: https://www.peyroniesforum.net/index.php/board,18.0.html
I live in Norway, and It is impossible to get these things here. I might get prescription for pentox from the doctor about a month, however i can not see how that and ACL can help with the disease which improve the bloodflow. In my opinion bloodflow increase could be done with physical activity which i have lots of (3hrs of tennis, running...).
VED/Traction therapy devices don't exist here, but could it cause any harm? Have anybody's symptoms really improved? I would of course like to do something, without causing anymore damage.
Sams
I would suggest that you start Vitamin E 400 IU at least twice a day. VED therapy would be a great help. Old Man may be able to tell you how to get a VED in Norway.
Follow his routine it will be slow but help a lot. After all this time I have gained back between 1/4 to 1/2 inches with the VED.
Over 12 years ago when Peronies hit my Uro put me on Vitamin E 400 IU three times a day and potaba. About 18 months later my curve corrected but left all the ugly side effects, loss of size, ED, Venous Leakage and finally corporal fibrosis.
I firmly believe that if the Doctor had put me on the VED when the Peronies first started I would not have lost so much size.
Good Luck!
Jackp
Sams.
If you can find us, you can find the tools to try to get better. true, you might fail, but it is unlikely that what we recommend will make you worse.
Note: we do not tend to recommend surgery, injections or other radical attempts to get better that many of us have had make us worse.
What we do recommend has either helped us, or helped someone else, or at least helped keep us from getting worse.
You need vitamins? I think they sell those in Norway. Sex aids? Yup - you can get them there too. Even Norwegians like to spice up their sex life! ;) Even on remote fjiords on the sea, you can get mail eventually. No privacy? Take a trip to the big city. Not only are there sex shops in Oslo, but there is also internet access to international outlets for VEDs or traction devices.
For instance, on this web page, a Norwegian "expert" on sexuality discusses the recent upswing in use of penis enlargement devices:
http://www.dinside.no/php/art.php?id=349672
Here is a source of vitamins online - they discuss shipping to Norway and other countries and tell what might cause trouble:
http://www.iherb.com/info/shipping/ShipOtherCount.aspx
See? Without too much work you can find ways to solve problems, or to at least begin to work on them.
The bigger hurdles will be in learning as much as possible about Peyronie's Disease so that you can intelligently discuss options with your doctor. Good luck on this journey. Remember - many of us have walked down these pathways before and can stand here to help show the way. I am glad that you are here to ask for help.
Tim
Sams - You need to try to be proactive :). You will have no issues buying Vit E and should also be able to purchase ALC too, though if it proves more elusive there are many internet sites, which I'm sure would have no issue with shipping to Norway. The same applies to the VED. I bought mine from the states, even though I live in the UK. I did the same again with the fastsize device. I wouldn't immediately advise you to try to buy pentox online as there are no doubt lots of fake sites around. However, if you can't get a urologist to prescribe some to you, then I wouldn't blame you for exploring other avenues. The main thrust of what I'm saying is that I'm sure most companies ship to Norway even if you can't find these items on home soil.
In your position I would start taking action now. Even if you think ACL won't work, there is a chance that it will help, so I wouldn't automatically overlook it. Sure it's relevant to have a good diet, exercise and so on, but as Tim states since you've found this place, you should try to be open minded about recommended treatments.
Thanks guys for your advice. I appreciate this. I have started with Vitamin E 1000IU, but not sure if i should start with Traction or VED. Do you have any suggestions?
jackp, you are talking about other sideeffects including venous leakage. Is this something that happens often in peyronie or do sufferers experience it sometimes while other times the erection is sustained.
I have experienced venous leakage sometimes not always. I have read that if the bend/deviation is too much then it will cause ED. Is venous leakage common in peyronie's disease that always/often happens or can it be controlled in some cases?
Sams, You need to understand that combating Peyronies is not just about increasing blood flow. It is about stopping fibrosis. Fibrosis is a process that tends to be progressive and very difficult to bring under control, let alone cure. Those things other forum members have suggested below are things which have helped many of us around here to at least stop this thing from progressing and from becoming more debilitating. Tim mentioned iherb.com. I have ordered from them for some time now and found them to be very reliable. Other major suppliers shipping internationally include VitaCost (http://www.vitacost.com/help/index.html#InternationalOrders). I wish you the best! - George
Thanks George,
except frmo Vitamin E, what is appropiate to order from these websites?
Iceman- I noticed increased erection quality immediately, this led me to believe that that pentox thinning the blood was helping the penis fill up and the effects weren't permanent. Overtime I definately noticed an increase in flexibility, some of the "hardness," that time and i have discussed before seemed to go away, but not all of it. Still if i get shrinkage in a cold shower, or run, my penis will still shrink and harden. But over all when flaccid in (non cold temps) my penis hangs better and is more flexible. I would say by no means am i cured, but it is more comfortable and finally exciting to see something that is doing something... I've tried just about every treatment option available, tried iono, spent hundreds on topical verapamil, overall I've easily spent thousands to combat this crap. Now i'm reloaded with pentox and ready to go, I was taking 3 pills per day, the max you can go and will do it again. I'm deciding whether to mix in acetyl l carnitine, and vitamin e. When i saw the improvements before I was only on pentox, nothing else.
Tim,
My spirits are buoyed my friend, and yes i had to make some changes. But i'm back with more pentox than ever now! Hence my new name Comebackid!
comeback
My absolutely top recommendations would have to be:
1) Pentoxifylline. Pentox will likely show early on good effects because it modifies the red cells that carry oxygen to the tissues so that they are more flexible and can fit through damaged blood vessels, thus delivering oxygen and nitric oxide to damaged tissues. But its effects long term go way beyond this. It actually inhibits glycation as well, thus shutting down the flow of harmful cytokines like TGF-beta-1 and oxidants which continue the process of tissue destruction. This allows the slow process of tissue repair to proceed without the new tissue being quickly destroyed. This is actually the most important part of what Pentox does and this is what will produce the long term benefits. Both of the above qualities play a large role in Pentox's huge anti-inflammatory capabilities.
2) Acetyl-L-Carnitine. ALC is yet another proven anti-glycation substance that actually has a study behind it indicating it possibly beneficial in the treatment of Peyronies. While it will not give the short term relief that Pentox does, it should be useful over the long term in inhibiting glycation and slowing and possibly halting the fibrosis allowing natural healing to go forward.
3) VED. Not an oral treatment, but I absolutely do want to mention it here. I don't want to put down traction, but traction has no where near the evidence behind it that the VED does. Countless people here have benefited from VED and it likely is able to physically counter the glycation process and bring some of the same benefits as the above mentioned products.
4) Vitamin E. The best Vitamin E is the natural kind. I found the common synthetic forms to be virtually useless. I also have a deep suspicion that the seven less common Tocos, especially Gamma Tocopherol, are more effective than the common Alpha Tocopherol form. Right now I am using only Jarrow Formulas Gamma Tocopherol and TocoSorb products. But certainly I would make sure to at least use a good full-spec product like Now's Advanced Gamma T formula.
5) Aloe vera. Aloe vera's wound/scar healing qualities are legendary and its benefits are likely related to its ability to accelerate collagen turnover. Right now manufacturers are able to turn out much more potent Aloe supplements due to more advanced purification techniques. I have personally gone from 100mg soft gels to 250mg freeze dried capsules and 500mg freeze dried capsules are now on the market. Increasing the rate of protein turnover should increase the rate of getting rid of damaged tissue and replacing it with normal tissue.
6) Diet. A healthy diet is extremely important. And that means getting rid of unhealthy food like refined carbs, heavy starches, processed foods, bad fats, excessive red meat animal protein and other stuff that encourages glycation. The idea is to get the most nutrition possible out of the fewest calories possible. Reducing calorie consumption is imperative, but starving yourself is not an option since it will only cause other bad things to happen (like rebound weight gain, etc.). The solution is not in counting calories, but in eating nutrient dense food and training yourself to stop eating when your hunger is satisfied. This is really difficult in our modern society due to social pressures to devour calories, but it will pay great dividends. Helpful websites are Dash Diet (http://www.dashdiet.org) and Real Age (http://www.realage.com).
7) Exercise. Exercise is extremely important and can make a huge difference in glycation levels.
8) A lot of other things may be benificial, but the above is where I would start. Examples of other things would be Arginine, Horny Goat Weed, Mangosteen, etc.
- George
comebackkid - thanks for your reply - quick question - so in your opinion you feel like your curvature has improved because of the pentox regime and nothing else - it makes me wonder if this is the case with you and what george9999 said in his last thread why dont all uros prescribe this??????
Iceman - They just aren't as up-to-speed on the treatments as they should be. Stories such as the one where the uro looked through an old medical journal and handed out some Vit E are all too common. As for why they aren't aware of new treatments, I suppose it depends on their area of interest. There seems to be a certain lack of compassion towards peyronie's from some quarters. Finding a good urologist is hard, something I haven't been able to do in the UK.
Pentox treatment continues to sound promising. Is there now enough evidence to show that it really does help cure Peyronies Disease? A members survey would help.
Doctors here in the UK are unlikely to prescribe it unless there is good evidence that it helps (and even then would need a lot of persuasion). So far we have lots of anecdotes. Is there anyone on this forum willing to tie it all together and produce a report? Perhaps there is a proper clinical trial going on - if so when will it be completed? In the absence of any other treatment, it is important to verify the effectiveness of Pentox.
Regards
Percival
newguy- to speak to a top uro I flew to san francisco from australia just to spend 30 minutes with Dr Lue - it might be worth a visit for you - have you heard of him??
Iceman - It's definitely something I'll consider as I have been to SFO on occasion in the past. As you may have read elsewhere I can currently worries that I may have injured myself recently. However, I'm taking all relevant meds and have a VED at hand, and as my recent pain is lessening, it seems that I'm doing all that I can anyway. If I notice any changes I will certainly make the leap to go further afield if I cannot find a urologist well versed in this area in the UK. Should I be fortune enough to not have made the problem worse, I will just continue with the VED and meds for the foreseeable future and give that a solid year or two to see if I can improve my curve, and re-evaluate at that time. In the meantime I will of course look out for any new developments. I know nothing can really move fast enough for us when we're suffering from this problem, but when you consider that pentox is a fairly new addition to the arsenal, it goes to show that there's always hope. Looking forward, I'll be excited to start hearing (hopefully) positive stories bubbling to the surface from the clinical trials that are going to take place in 2008/9.
Quote from: Iceman on May 11, 2008, 09:03:44 PM
newguy- to speak to a top uro I flew to san francisco from australia just to spend 30 minutes with Dr Lue - it might be worth a visit for you - have you heard of him??
newguy - are these clinical trials of pentox? who is conducting these trials and how did you hear about it?
No sorry, I was talking in a more general sense... the Auxilium trials for instance. As far as pentox is concerned, I have only heard about the tests done on rats that suggested it could be a worthwhile treatment, as well as how it acts upon other medical conditions. I have seen both positive and negative results to studies relating to ALC tho.
Quote from: Iceman on May 11, 2008, 11:22:33 PM
newguy - are these clinical trials of pentox? who is conducting these trials and how did you hear about it?
hi-- new member as of last week--- i posted on the our histories forum page last week, and have been gearing up for battle, and have a few questions. any thoughts appreciated. I have in hand the pentox, acetyl l carnitine, l arginine (as well as other NOS products). I have on order the VED. I haven't got the aloe vera yet. Started the pentox today.
As far as the pentox is concerned-- is the standard dose of one 400mg 3 x day what people are taking?
Similar question about the ALC and L argininine--- how much and how often??
Where is a good source for high quality aloe vera??
After looking through previous posts, this is pretty much where i have settled on starting. As i have no idea what i am doing, i would appreciate any ideas. thanks
My advice is to start slow on the aloe vera. It gave me horrible diarrhea and cramps and I needed to change brands. George may have some specific advice about that.
Tim
This is what I used to use: Typical Aloe Vera Softgel product (http://www.gnc.com/product/index.jsp?productId=2133201&cp=2618598.2109037&parentPage=family). Note that they almost always use a term like "200:1 extract". It would give me just a bit of intestinal discomfort starting out. As Tim says, with aloe you want to take one, wait a day or two and then build up gradually and allow your intestinal tract to adjust. Same with fiber. Lots of fiber all of a sudden can give heavy duty cramping. In both cases much of this has to do with a conflict with intestinal bacteria flora. Both Aloe Vera and fiber actually cause a change in intestinal bacterial flora over time as some bacteria cannot tolerate Aloe and others, fiber. These are actually not the best bacteria to have in your gut in the first place so it is really good riddance, but you do have to build up slowly. The other issue with Aloe is the fact that there are two very different kinds made for different purposes. The first and most common kind is intended to clean you out. This is not the effect you want. It is full of aloe latex and will give you an extreme case of the trots Example) (http://www.vitacost.com/Natures-Way-Aloelax-with-Fennel-Seed). The other kind is like the one I pointed out above. In this case most of the latex is filtered out. I have also used this stronger softgel product Typical Aloe Softgel product (http://www.vitacost.com/Carlson-Golden-Aloe) in the past without any problem. The result is a soothing rather than abrasive effect. Now I have moved on to this "next generation" aloe product that is processed with a freeze drying technique and is highly purified: Typical Freeze Dry Aloe Vera Product (http://www.iherb.com/ProductDetails.aspx?c=1&pid=8113). After taking this product a number of weeks which is significantly more potent than the softgel approach, I have not experienced any intestinal problems yet. I hope to eventually move on to this product and give it a try: Potent new freeze dry Aloe Vera product (http://www.vitacost.com/NSI-ACTIValoe). I have not tried this one yet. In any case, go easy with it until you find out how you react to it. - George
Iceman,
I don't want to come across as ripping urologists and doctors. However, all the urologists I went to see were totally clueless when it came to knowledge regarding peyronies. I would say george knew more than all of them combined about possible treatments, when i brought up the ved the resident basically scoffed at me, and laughed me out of the place. Then the head urologist( who was a heck of a nice guy,) chimed in that the ved will do nothing. Dr. Lue has some studies that show that PENTOX WORKS! It is a very safe drug as george and many others have pointed out. There are some good doctors out there, tim is an example of one, because he continues to learn and engage, and listens to what people have to say. Some urologists are simply ignorant and only know what they are taught in medical school. As the times change, they don't. Plus some doctors are simply obsessed with surgery and making a quick buck. I have yet to hear anyones account of a successful peyronies surgery, that left them satisfied. Another example of the ignorance of some of the american urologists are these doctors who keep pushing infant circumcision to make 300-500 dollars a pop. I've talked to a few men from around the usa who because they were cut so tightly, their dick couldn't fully become erect and straighten out.
Frankly put, I've seen more innovative thinking on this forum than all the doctors I went to combined. If I were you, I'd give pentox a try, unless you have a pre -existing condition. And no iceman i dont have stock in companies that make pentox :D
CoMeBaCkId
You guys have motivated me to try Pentox again. It bothered my stomach so I stopped. Possibly the NSAID's I take is part of the problem. This time I've cut caffeine and reduced the NSAID's by 50%. I will take 2 x 400 Pentox daily - 3 will likely be too much. After 1 day this time the only problem is a headache but that may be from caffeine withdrawal.
George, I started Aloe Vera a few weeks back. I've been taking the Gel - 2 ounces twice a day as recommended. How does the Gel compare to the capsules?
Ptolemy, Are you referring to bulk gel or the softgels? - George
It is the bulk gel that comes in a bottle. I didn't know it came in capsules until I read your messages below. Are both forms equal in capability?
I need some help. Especially from George and Tim.
VED, Traction and Meds have helped my Peyronies somewhat – less curve and restoration of some of the lost size. The one major problem for me is the slow continuous growth of the plaque over the past 3 years. This has motivated me to try Pentox in an attempt to stop the plaque growth.
Based on the collective wisdom on these boards, I am taking the following vitamins/meds daily to help me in my Peyronies war:
Vitamin E – Swanson Full Spectrum with Tocotrienols (200 IU including 420 mg of d-Gamma-tocopherol) plus Vitamin World High Gamma Tocopherol (400 IU including 400 mg of d-Gamma Tocopherol)
Acetyl L-Carnitine – 2000 mg
L-Arginine – 2000 mg
Aloe Vera – 4 ounces of Gel
Horny Goat Weed – 500 mg
To this mix I've tried to add Pentox – 2 x 400 mg
Unfortunately Pentox gives me stomach problems (which I believe that I can manage through) and severe headaches. The headaches are severe enough that I'll have to discontinue the Pentox. From experience, I believe that I am susceptible to headaches from vasodilators and as I understand it, many of the meds that I take plus the Peyronies treatments are vasodilators.
Vasodilator Peyronies treatments include L-Arginine, Horny Goat Weed and now Pentox
Vasodilator meds I'm on from the cardiologist and rheumatologist include:
Coreg CR – 20 mg
Diovan – 320 mg
Salsalate – 1500 mg
A lot of information but here is my question/possible alternatives. Should I:
1. Discontinue the L-Arginine and Horney Goat Weed and see if I can tolerate the Pentox
2. Maintain the L-Arginine and Horney Goat Weed and reduce the Pentox to 400 mg daily to see if I can tolerate that dosage
3. Go back to the Urologist and try a different version of Pentox if there is such a thing.
I am somewhat confused over Pentox. As I understand it, the drug effects the cellular elements of whole blood which (hopefully) terminates the plaque growth but it also functions as a vasodilator. Is there something out there that addresses the cellular elements of blood but is not a vasodilator?
I would strongly suggest stopping everything else except the vitamin E (all non-prescription, I mean) and restart Pentox. If you drink coffee or smoke, stop. It's effects for Peyronie's should hinge on blockade of TGF pathways, not through blood flow changes, IMHO. Also, a gradual increase in plaque size suggests that you should take it.
The original paper stated in the discussion:
"Since pentoxifylline has been shown to inhibit fibrosis in humans and in animal models, we generally use it in patients who have evidence of ongoing inflammation (e.g. pain) or fibrosis (e.g. changing curvature). We have not generally used it for patients with chronic stable lesions or with heavy calcifications, since we presume these to be stable and less amenable to pharmacologic intervention." Brant, Lue et al
http://www.nature.com/ncpuro/journal/v3/n2/full/ncpuro0409.html
If the headaches continue consider Trental extended release to see if a slower release into your blood stream works better. I note that headaches are rarely reported side effects and occured a little LESS than in the placebo (1.2 vs 1.6 percent of the time).
http://www.drugs.com/pro/trental.html
If that does not work, go back to square one and talk to the cardiologist about possible drug/drug interactions. If he learns that the function and shape of your penis is at stake, he might be more willing to think about alternatives (to see if the combinations are causing your HA's).
Tim
Thank you Tim. The thoroughness of your response is very much appreciated.
It was quite enlightening to read that headaches were more frequent with the placebo group than the Pentox group. That would suggest the headaches are triggered from a non Pentox source.
I've never smoked but eliminating caffeine will be a commitment. Not much other than reshaping the penis would motivate giving up Starbucks. But I'll do it.
I think I will call the Urologist today and try to get on the Trental extended release. I didn't see any downside and it may help me tolerate the drug. I assume if I can accept the drug, increasing to 3 x 400 daily from 2 x would also help improve the effectiveness of the treatment.
I will stop all other non prescription meds I'm on except for vitamin E
tim468 - is it REALLY necessary to give up coffee??? - whats the disadvantages of having a strong cup of coffee in the morning?
Thx
Hi Guys - just got this email from Dr Herazy - its part of the mob I bought some Neprinol from about 3 months ago...Any commenrts??????
PDI gets many of these emails, and when we get permission we send them along so others can benefit from them.
Dr. Herazy,
I thought I would share an encouraging report. After about 30 days on the plan with no change, I thought to check 2 other small scars. I have had these scars for about 13 years. They were completely gone. Amazing. At about day 40 I began to notice the 1st perceptible changes in my Peyronie scars. They are thinning and becoming smaller. I am using your E,C, Acetyl-l-carnitine, 10 to 12 Neprinol per day, ginger, MSM, Callisto Vitamin E oil, PMD DMSO and Super CP copper twice a day some time 3 times.
Thanks for your help. I am so encouraged.
Please share this email if you want to. Everyone needs good news.
XXXXXXXX
Wow! My doctor had given me a small handful of 50mg Viagra sample packets (8 pills per, I had 3) and I had just run out and got him to write me a prescription...I filled it today. 156 dollars for 10 pills! :/
I can see why all the sites say Peyronie's disease strikes mostly men over 40. I'm 24, and I don't have the budget to afford that treatment! Hopefully when i get benefits, it'll cover some. The secretary at the urologist said some plans cover 8 pills a month.
Ptolemy,
I forgot to mention that other than jittery legs in the beginning, I also experienced some upset stomach. It wasn't to bad, and when I started to take my pills with a meal it went away. Frankly even if it hadn't I woulda put up with it to cure my bent penis!
comeback(with enough pentox for everyone on this forum)
Iceman,
I think the testimonial letter is spam and fake - just the vibe I get from it.
Coffee can adversely affect blood flow distribution, and increase stress. For ME, I have noticed that coffee increases the "uptight" or "turtle-effect" a lot. Since I personally associate that feeling with worsening of my Peyronies, I had to quit coffee. But that is just me. Also, I was getting awful headaches and they resolved after stopping caffeine (I still have green tea which has some caffeine in it).
Tim
In general, I agree with Tim on this. PDI carries a lot of stuff that is useful for treating Peyronies. But they also push on things like Neprinol which is VERY expensive when you use it like they suggest. I have never seen a verifiable (or even believable) positive report regarding Neprinol and Peyronies. All the reports I have seen have so much money behind them they amount to thinly veiled infomercials. And note that it is only Neprinol that the email spells out the AMOUNT you "need" to take. At least ALC has some verifiable research support, but the email conveniently leaves out the amount of ALC that was being "taken". So it really looks to me like it is really Neprinol that Herazy wants to sell you. And bet your life that Neprinol, as pricey as it is, leaves behind a good margin for the retailer/distributor. In any case, I certainly would not waste my time basing my decisions on unverifiable emails when we have at our disposal a much more believable trove of experience right here on this forum. At least here you can engage the person making the claims with relevant questions and challenges. Try that with the guy who supposedly sent the email. I believe the courts refer to such information as "hearsay". So pick your poison, but I prefer the guys around here by a long shot. All the info posted here tends to get healthily critiqued and challenged and you have plenty of opportunities to get to know the messenger behind the message. - George
george9999 - ive got 2 bottles left of neprinol left - should I throw them out - i mean can they do harm as I am taking pentox - will they clash in your opinion and work against the benefits of pentox??
Iceman, I am not a doctor or a pharmacist. So this is a non-professional, non-authoritative opinion. My personal view would be that Neprinol and Pentox are two completely different substances. So different that I see very little risk of interaction. But again, I am not a doctor or pharmacist. I have a lot of Neprinol left myself and I plan on taking it at some point. I even think it probably has some real benefits. It certainly seemed to help clear my bronchitis. But I see it as being of no use for Peyronies. The theory is that somehow the enzymes in Neprinol are supposed to break down the plaque. The problem is that pharmacologically, this theory makes no sense. It is not only a matter of whether or not these enzymes are capable of dissolving Peyronies plaque but also a matter of achieving enough tissue saturation to be effective. I came to the conclusion early on that the likelyhood of this happening is close to zilch. AND there is NO research that gives any indication that it can happen. In the meantime we are left shelling out our hard earned money on this expensive stuff. While I appreciate what Herazy has done in bringing possible Peyronies supps to our attention early on, I feel that he is making money on this too, and he is being a little bit unethical by pushing Neprinol on people. So, I don't think it is likely to harm you, I just don't think it is likely to be very helpful either, at least not for Peyronies issues. - George
Guys,
What do you think about this:
"When you supplement with carnosine, however, something different happens. The carnosine quickly binds with the aldehydes, preventing them from damaging the proteins. The byproduct of this reaction is lipofuscin. So once again you have inactive lipofuscin compounds, but this time as the result of PREVENTING protein damage. In a sense, with carnosine you trade protein damage for lipofuscin. As I said before, by itself, lipofuscin is not harmful. However, if enough of it accumulates over time (and this process is accelerated when you supplement with carnosine), it can interfere with proper cellular and organ functions. So the bottom line is that however it is produced (as a result of protein damage, or as the result of taking sacrificial carnosine to prevent protein damage), you want to get rid of it."
According to the article, DMAE is the supplement that can clean up the lipofuscin caused by Carnosine supplementation.
Here is the link:
http://www.jonbarron.org/barron_reports/01-01-2005.php
DMAE: Should we be supplementing with DMAE? I'm not too sure on this one. One reason Carnosine supplementation is often indicated is that many people are deficient in Carnosine. In fact the presence of fibrosis itself indicates a likely Carnosine deficiency. Yet I still only take 500mg. Unless one has a KNOWN deficiency we should be careful how much of this stuff we take. And so now we know that DMAE cleans up after Carnosine. BUT, the problem with acting on this knowledge is that there is research out there indicating that TOO MUCH DMAE may, in fact, be harmful and even may shorten your life. It is perfectly possible to be low on Carnosine and perfectly normal in terms of DMAE. So in the absence of any known DMAE deficiency, I would recommend going easy on the DMAE. I personally haven't taken it before, but I do have an unopened bottle of it lying around and will probably take some eventually. But it is not high on my priority list and I will likely take only one or two pills a week if and when. But it is good information. Just act on it conservatively and you are likely to get a bit of benefit and not do yourself in in the process.
Mangosteen: It has been known for sometime that Mangosteen has the ability to inhibit Glycation via its Garcinol component. However, recent research indicates it is also able to inhibit the Cytokine TNF-Alpha and mitigate its damage. Yet another testament to the anti-inflammatory power of Mangosteen.
Cozaar and Micardis: Both Cozaar and Micardis (AT1 ARBs) inhibit both Glycation and TNF-Alpha. This should make them the antihypertensives of choice for those Peyronies sufferers who also happen to have high blood pressure of the high renin variety.
- George
Does anyone know where I can purchase mangosteen from in the UK? I am beefing up my oral treatment regime and figure that it can't hurt to add to it. Holland and Barrett is the main health store here and they don't appear to stock it. Below is a list of my current oral treatments (i've included those on order which should arrive in a few days):
Multi vitamin
Omega 3,6,9
Acetyl-L-Carnitine
Propionyl-L-Carnitine
Acetyl-L-Cysteine
L-Carnosine
L-Arginine
Jarrow Gamma E 300
Pentox
Occasional Viagra
anything essential missing from my list?
I'm also running 4-5 times a week for 30 minutes and have a good diet (mostly nuts, vegetables - protein from chicken, tuna - no refined carbs, junk food etc)
Here are some starters, I will leave it to you to sort out who is legit and who isn't since I can't figure that out from this side of the pond:
BodyTec (http://www.mangosteenfruitjuice.co.uk/)
Healthwize (http://www.hwize.com/mangosteen/mangosteen.html)
VGS Health (http://vgspublishing.com/vgs-health/mangosteen-juice_anti-oxidant.html)
KernelPower (http://www.kernelpower.co.uk/acatalog/Mangosteen_Supplements.html)
There are actually lots more, just go to uksearch.com (http://www.uksearch.com) and use their product search feature!
Have fun!
- George
Many here have said: "Prostaglandin E1, among its other functions, opens blood vessels and
suppresses collagen production. There is some evidence that when oxygen levels
become too low, TGF-B1 production increases and prostaglandin production
decreases."
In my own research I found this: http://endo.endojournals.org/cgi/content/abstract/131/1/21 (http://endo.endojournals.org/cgi/content/abstract/131/1/21) which says Prostaglandin E1 inhibits collagense. A bad thing! Or am I reading it wrong which could be very possible. Sometimes I research till I am bleary eyed. I was hoping taking flax oil, which has Prostaglandin E1 in it, would lessen my inflamation. Now I don't know if Prostaglandin E1 is good or bad? Any thoughts?
Prostaglandin E1 inhibits collagenase gene expression in rabbit synoviocytes and human fibroblasts
Cartilage breakdown, as seen in inflammatory and degenerative joint diseases, can be mediated by proteolytic enzymes, such as the metalloproteinase collagenase, the only enzyme able to digest collagen at neutral pH. In vitro collagenase gene expression can be stimulated by the phorbol ester tumor promoter 12-O-tetradecanoyl-phorbol-13- acetate. We have investigated the effect of prostaglandin E1 (PGE1) on 12-O-tetradecanoyl-phorbol-13-acetate-stimulated collagenase mRNA levels in the rabbit synoviocyte cell line HIG-82. PGE1, but not PGE2 or PGF2 alpha, was able to selectively reduce collagenase mRNA levels in a dose-dependent fashion. PGE1 markedly increased intracellular levels of cAMP, while PGE2 and PGF2 alpha had little or no effect on cAMP production in the HIG-82 synoviocytes. Agents known to increase intracellular cAMP levels, such as the adenyl cyclase activator forskolin and the phosphodiesterase inhibitor 3-isobutyl-1- methylxanthine (IBMX), mimicked the effect of PGE1, on collagenase mRNA levels. PGE1, forskolin, and IBMX also decreased collagenase mRNA levels in human skin fibroblasts, demonstrating that this observation was not unique to the HIG-82 cell line. Transient transfection experiments carried out in HIG-82 cells using a 1.2-kilobase portion of the 5'-flanking region of the human collagenase gene linked to the reporter gene luciferase demonstrated that PGE1, forskolin, and IBMX exert their inhibitory effect on the promoter region of the collagenase gene.
jxyz, I think that generally we would do well to leave things like Prostaglandin alone. This is because, like many substances in the body, it has both an attractive side AND a dark side. There is a place for these substances and sometimes we must use them in order to deal with a specific health problem. But certainly in the case of Peyronies, PGE1 is a wash. But, when it comes to Flax Oil, Flax Oil has MANY extremely healthy ingredients and I wouldn't be overly worried about the PGE1 connection. Certainly, for a lot of reasons, I wouldn't OD on Flax Oil or anything else for that matter. But in general Flax Oil is very healthy and I highly recommend it. When you start to look at various foods, you find all kinds of biologically active components and you simply have to take the good with the bad. In general, if you concentrate on a variety of nutrient dense foods (such as Flax Oil) as opposed to calorie dense foods, your health will benefit. But no, I wouldn't be taking direct PGE-1 supplements OR something like Forskolin unless I had some specific need to do so. - George
Tim468, an update on my progress. I stopped caffeine and all supplements except E, switched from Pentox to Trental and that cleared my headaches and stomach issues. Seems my sleeping was better as well. With all in order, I began adding back every 2nd day some of the other supplements. Aloe Vera was added back with no problems. However, adding back Acetyl L-Carnitine brought on minor headaches. I was taking 1000 twice daily. I will cut back to 500 per day or whatever I can seem to tollorate.
Is there a recommended dose of Acetyl L-Carnitine for those of us with Peyronies? George999 or any of you out there taking Acetyl L-Carnitine, how much are you taking daily?
Ptolemy, I am currently taking 1500mg of ALC daily, BUT I am NOT taking Pentox. My gut feeling would be that IF ALC seems to be giving you headaches, I would skip it. Given the choice between ALC and Pentox I would choose Pentox in a heartbeat since it is more effective than ALC in terms of Peyronies. So if you can tolerate 500mg, OK, if not, don't sweat it. Try some Mangosteen, Carnosine, or something like that instead. When it comes to drugs and supplements, each person is different. We need to be careful to not try to put everyone on exactly the same things. We know that different things are helpful. But some may be more helpful to some than others, and some may not be appropriate for everybody. So the important thing is to take what works for you WITHOUT causing unpleasant side effects or reactions. - George
Ptolemy, I agree with George on ALC versus Pentox. You may also be able to start low and gradually increase, OR, you may be able to take 500 three times a day and avoid the headaches.
Newguy, as far as PGE1, I am not so familiar. I am unsure of it's biologic significance versus other eicosanoids like PGE2. All the eicosanoids are formed after the release of arachidonic acid from cell membranes, primarily during inflammation. So, in a sense, I tend to think of them as "bad" (I know, should not judge). Advil should block release fairly well.
Tim
hi george + tim - Im using ACL + Pentox - when I was taking Pentox by itself there was still considerable pain - I bought some ACL on friday after taking it over the weekend the pain level has really decreased - can you explain this?? -Is ACL very powerful??
Thx
Quote from: Iceman on May 18, 2008, 08:57:45 PM
hi george + tim - Im using ACL + Pentox - when I was taking Pentox by itself there was still considerable pain - I bought some ACL on friday after taking it over the weekend the pain level has really decreased - can you explain this?? -Is ACL very powerful??
Thx
While we know that ALC attacks Glycation and thus should be useful in treating Peyronies, we also know that, unlike Pentox, it does not inhibit TNF-Alpha which is a key cytokine involved in inflammation. So this very fast impact on pain is a bit of a mystery. Perhaps ALC blocks inflammation via other pathways. But perhaps there are other explanations besides inflammation control. Perhaps the ALC is attacking the pain response itself in an analgesic fashion. There is some evidence that this MIGHT be possible. For example, we do know that ALC brings relief from pain.
QuotePain. 2008 Apr;135(3):262-70. Epub 2007 Jul 30.
Chemotherapy-evoked neuropathic pain: Abnormal spontaneous discharge in A-fiber and C-fiber primary afferent neurons and its suppression by acetyl-L-carnitine.
Xiao WH, Bennett GJ.
Department of Anesthesia, McGill University, 3655 Promenade Sir Wm. Osler (McIntyre Bldg., Room 1202), Montreal, Que., Canada H3G 1Y6. wenhua.xiao@mcgill.ca
Cancer patients treated with antimitotic drugs in the taxane and vinca alkaloid classes sometimes develop a chronic painful peripheral neuropathy whose cause is not understood. In animal models of painful peripheral neuropathy due to nerve trauma or diabetes there is obvious axonal degeneration accompanied by an abnormal incidence of spontaneous discharge in A-fiber and C-fiber nociceptors. But animals with paclitaxel- and vincristine-evoked neuropathic pain do not have axonal degeneration at the level of the peripheral nerve. However, recent data show that they do have a partial degeneration of the primary afferent neurons' terminal arbors in the epidermis. It is not clear as to whether this relatively minor degeneration is accompanied by abnormal spontaneous discharge. We surveyed primary afferent axonal activity in the sural nerve of rats with the paclitaxel- and vincristine-evoked pain syndromes at the time of peak pain severity. Compared to vehicle-injected controls, we find a significant increase in spontaneously discharging A-fibers and C-fibers. Moreover, we show that prophylactic treatment with acetyl-l-carnitine (ALC), which blocks the development of the paclitaxel-evoked pain, causes a significant decrease (ca. 50%) in the incidence of A-fibers and C-fibers with spontaneous discharge. These results suggest that abnormal spontaneous afferent discharge is likely to be a factor in the pathogenesis of chemotherapy-evoked painful peripheral neuropathy, and that the therapeutic effects of ALC may be due to the suppression of this discharge.
PMID: 17659836 [PubMed - indexed for MEDLINE]
There is also the possibility that there might be some powerful synergy going on between the Pentox and the ALC. In any case, it works! Thats the important thing. Different things work for different people and I am always happy when I here that some combination from our little collective toolkit brings relief for someone here on the forum. Thanks for sharing this! - George
Just to add to this conversation, when I injured myself recently either by over zealous traction or manual stretching, I went straight back onto pentox as I have some reserves of the drug. The pain only very slowly improved over a period of weeks (which worried me greatly), but when I went back onto ALC, I noticed a distinct improvement in the pain the very next day. I'm still worried about any manage that may have occured, and am introducing the VED back into my routine, so hopefully that will help.
Anyway, this message is really just to echo the comment of Iceman. Of course it could be a coincidence, but it's worth putting this info out there to see if others have similiar experiences, and we can flesh out the usefulness of this powerful combo. Have there been any 'ALC + Pentox combination' studies in those recently suffering from penile trauma and later peyronies? This is the kind of study that would really be of interest to me. It pains me that a great number of men receive 'wait and see' advice following such injuries, when using a powerful
precausionary approach could well be the ultimate course of damage limitation.
george, newguy - i would like to add that I also do use L arginine as well but this is DEFINITILY not as strong pain relief as ACL.....
I also take a large measure of mangosteen juice concentrate in the morning for the past 4 weeks but I must say its a bit disappointing in regards to the inflammation...
I think it is very important to distinguish between inflammation and pain. While the two often go hand in hand, it is possible to have inflammation without pain AND it is possible to have pain without inflammation. What we know about Mangosteen from the studies is that it DOES treat inflammation. There is NO evidence that it directly treats pain. ALC, on the other hand, DOES treat pain, but NOT inflammation. So it is possible that pain can be resulting from some sort of peripheral nerve damage rather than inflammation in which case Mangosteen would be useless. And that is why I repeat: Each person's situation is different. What works for one may not work for another. It is important to use what works for you. And it is important that substances be used according to knowledge rather than simply according to hearsay (second hand experience). Knowing how each substance works helps us to understand which ones to try AND, by observing the results, can understand in helping us to know something about what may be going on in our bodies. - George
newguy:
Just a little tip for you on resuming VED therapy - this time be extremely careful to use only enough vacuum pressure to do the protocol. Excessive vacuum pressure will surely cause problems. Also, use plenty of lube on your penis (Careful not get any on your scrotum) and the inside of the cylinder, especially when using the small cylinder with the three cylinder VEDs. A good slippery surface is required to prevent any chafing or difficulty in sliding the VED up and down the shaft, etc.
If you have questions about VED usage, feel free to let me know if I can help.
Old Man
another day with less pain - this is great!!! - I think its the ACL or perhaps maybe Ive been on pentox solid for 3.5 months - will try aloe vera gel tabs today ( if i can buy them) on george999 advice and will let you know how it goes...
Felling a tiny bit more POSITIVE now:):):) - lets hope it continues...i dont think about it as much and if the pain is reduced Im not obsessing about it.
Old Man - Thanks for the advice. My past experiences with VED have been trouble free. It was over enthusiastic traction combined with manual stretching which I believe caused my recent injury. I read up a little on various forums this week and have found a few 'manual stretching and traction device' related horror stories.
With the VED I followed a set regime and pumped to the same pressure so it was effectively very safe and I believe should be the first port of call for peyronies sufferers as far as physical exercise are concerned. Expanding my routine though and especially I believe, the manual stretches (which can exert very varying tension I'm sure), pushed me over the edge, effectively like overtraining in the gym I think. I didn't notice any pain at all at the time, but the following day I experienced very noticeable pain (not 'agony', but constant) which continued for around three weeks. I started back on pentox immediately after the incident (and ibuprofin), and got my hands on some ALC at the 3 week mark. Following that the pain appeared to subside quite rapidly, to the point where 4-5 weeks in now, I have no pain at all. I am still very concerned that I may have aggrevated my condition, which would be very distressing as I have made progress in reducing my curve somewhat, but I'm taking all of the relevant oral meds so I'm doing all I can.
I didn't want to launch into use of the VED again too quickly, as I considered that it could aggrevate any inflammation present. Since the pain has gone away now, it seems like a good time to add VED back into my peyronies regime and hope for the best.
Iceman - Great news about the reduced pain. I know it had been troubling you, so it's good to hear that the supplements you're on may have been beneficial.
newguy:
Yes, it is better to be safe than sorry about any exercises with Peyronies Disease.
Old Man
My peyronie's isn't as bad as other's I have seen on the net. My penis had about a 10 degree angle to the left about 3" up from the base. Aside from that, my penis is straight above and below the bend. It started about 1 to 1.5 years ago and came on pretty suddenly. I have noticed that in the past few months the curve has gotten worse, it's probably somewhere near 20-25 degrees now. My urologist doesn't know much about it and when I ask him about things I've read online I feel as if I know more than him and he is very hesitant. I have called and made an appointment with the closest urologist I could find with any experience with Peyronies, Stephen Beck at Indiana University (I'm in Louisville, KY).
I have, during the past 2-3 months, been on a low-calorie diet, I have lost about 25 lbs (from 210lbs). Certainly being on a diet hasn't had some adverse effect on the peyronies? Here is what I've been taking for the past 4-5 months, but it doesn't even seem to be stopping it much less make it any better. Let me know what you think. Thanks.
Vitamin E 400i.u. 2/day
Vitamin B6 100mg 2/day
Acety-L Carnitine 750mg 2/day
I also take these for pre-existing stuff:
Indomethacin ER 75mg 2/day (for back-pain)
Bupropion SR 200mg 2/day (depression)
1-a-day multi-vitamin 1/day
aldar - try PENTOX!!!! - read the threads here....
Like I said, unfortunately my current urologist doesn't seem to consider my suggestions. I have suggested pentox and he said he'd write it. So when I went in to get it, it wasn't there. So I called again and left like 3 messages. Still no call back. That's why I found the other doctor, hopefully he is more knowledgeable and receptive, too bad he is 2.5 hrs away.
- The pentox you're referring to is pentoxifylline or generic trental right?
aldar - not sure about this - george 999 or tim 246 are the guys with the info..
Pentox = Pentoxifylline = Trental - George
I have a call in to my urologist about the pentox, hopefully he'll prescribe some, we'll see.
What is ACL? Anything else I should add or subtract from the below? Dosages?
Vitamin E 400i.u. 2/day
Vitamin B6 100mg 2/day
Acety-L Carnitine 750mg 2/day
I also take these for pre-existing stuff:
Indomethacin ER 75mg 2/day (for back-pain)
Bupropion SR 200mg 2/day (depression)
1-a-day multi-vitamin 1/day
Aldar - ACL is a mispelling of ALC (Acety-L Carnitine) :), which you're already taking.
All: Today I was running at a reasonable pace on the treadmill and my heart rate was higher than usual. I'm sure there is probably a perfectly reasonable explanation for this, but out of curiosity do you guys think that blood thinning/altering treatments safe for those undertaking very strenuous exercise?
newguy - I don't know the answer to that one. I'd call a cardiologist for a better opinion on that one.
Tim
george999 - i am following your recommendations to the letter - even strated aloe vera tablets - are you sure that all these treatments are Ok - I am putting allot of faith and trust in what you are saying..
Thx
Iceman, I am NOT a doctor. You need to understand that. I am not intending to be "prescribing" anything for you. I am merely offering suggestions as to what MIGHT be helpful. As to whether these "treatments" are OK, I am not sure which "treatments" you are referring to. I assume you are referring to the supplements I suggested. In that case, they are all pretty much things that I myself am taking. And they are things which are pretty much known to be reasonably safe. I make it a practice to avoid supplements which have a reputation for being risky. Are they "OK" for you? That I really can't tell you. I simply have to assume that you will use common sense and stop taking whatever might possibly cause an adverse reaction. Who knows what any given person might be allergic to? People can be allergic to just about anything. I am happy to suggest things that I believe are helpful and that seem to have worked for me, but I really don't want anyone following me blindly. As for your problem with pain, I really don't know. When I talked to my doc regarding my pain, he didn't give me any answers. Only afterward he told me like "Oh, you have Peyronies" which was the first I heard of Peyronies. If I could do it over again I would be trying Mangosteen which I have already suggested and probably cold packs. Other options might be NSAIDs which I am not particularly ecstatic about but which seem to work for some people and plain old aspirin. In my case, since I didn't know what was going on, I simply put up with the pain for months until I "graduated" to the next stage of the process. I wish you the best, but if you are looking for someone to put faith and trust in in these matters, take my advice and see a doctor. - George
Aldar, This one got by me in one of your previous posts, but I have to tell you that taking 100mg of B6 twice a day for an extended period scares me just a bit. You need to be careful because you can upset the B vitamin balance in your body and end up with burning feet and possible nerve damage. If you are taking the B6 for Peyronies, you would be better off taking the Pyridoxamine form. - George
George...
well I can certainly cut back. Actually since I've started all these vitamins/supplements and the bupropion I have just not felt right physically, I feel a bit better psychologically though, but if it at least stops the progression of the peyronies then that's fine with me, I'm used to not feeling OK. So if I cut the B6 to 100mg a day is that OK? What about the rest? Dosage OK? More? Less? Anything to add or stop? I'm not asking for a legally binding or legally obligatory recommendation or anything, I just want to take everything I possibly can to fix or at least stop this thing. Right now it's just getting worse.
I've had severe depression and self-esteem issues long before this 'icing' came along. At this point, I need to try anything and everything. Please let me know your further recommendations. If I can get it legally and it's not prohibitively expensive, then I need to try it.
Thanks in advance.
-Adam
george999 - what I am trying to say and I dont mean to pester you ,is that are these oral treatments such as:
ACL, mangosteen, aloe vera had any benefit to people other than yourself in your opinion - it would be good to get some positive feedback from taking these...
Quote from: Iceman on May 22, 2008, 11:23:48 PM
george999 - what I am trying to say and I dont mean to pester you ,is that are these oral treatments such as:
ACL, mangosteen, aloe vera had any benefit to people other than yourself in your opinion - it would be good to get some positive feedback from taking these...
Iceman, I agree completely! And its ALC
NOT ACL. - George
Aldar, Everything else looks reasonable on the supplement side. I would get rid of the Vitamin E if it is the Alpha-Tocopherol form and go to at least a full spectrum E. I prefer the Gamma-Toc and Tocotrienol forms. I believe the Alpha-Toc is highly overrated and if it is the synthetic form on top of that, I consider that to be near useless. Aside from that there are lots of other possibilities you can glean from this thread if you go back through its history. I can also tell you that your depression issue stems from physiological issues. Diet and exercise can do wonders for you in this regard. I highly recommend Real Age (http://www.realage.com) for tips. But be sure to continue to follow your doctors directions regarding your prescription meds. - George
Iceman - From my perspective, I would say that ALC has been useful for me recently in helping with pain, even though it's not frequently used for that reason. I also believe that I may have experienced some benefits from Pentox in the past. It's often difficult to tell though, especially for those in the early, unpredictable stages of peyronies, to what extent any oral treatment works or doesn't work. There's evidence to back up pentox though via studies, at least enough to convince me.
Ultimately, if there is at least some science to back up using something, and others have positive experiences of it, there's no reason not to persue them, especially i the face of the lack of treatments offered traditionally. I would certainly think, compared to taking nothing ( no pentox, alc) , or doing nothing (no VED , traction) a positive approach can reap very real benefits. It's all about making the best of your situation at this time, and trying to keep your condition under control until better treatments emerge. If we skip forward 5 years, we'll probably be in a totally different place with regards to peyronies. We are not without hope.
Any documentation on the benefits of taking days off of supplements used. In my attempt to adjust to the use of Pentox, I stopped taking all supplements. I had been using a Horny Goat Weed & L-Arginine male enhancement which I discontinued for about 5 days. When I went back on the enhancement it seemed to have a stronger impact. Has anyone noticed anything similar? I have stopped and restarted these types of enhancements previously with similar affects. I have also read that occasionally skipping Acetyl-l-Carnitine for a day has benefits.
Ptolemy - In the past I have occasionally skipped taking vitamins for a few days, but that was more through fear of building up toxic levels. Don't get me wrong, I don't take them by the bucketload, but it seemed somewhat prudent to occasionally fall back on a healthy diet for a few days. The same is true in weightlifting, where supplements such as creatine as often 'cycled' as it seems to become less effective with time.
I've seen no evidence with acetyl-l-carnitine that it becomes less effective with time though, and do not believe that at the levels ingested it is at all toxic. As such I do not intend to stop taking it, or to cycle it at all. The same is true of pentox, a drug that takes a while to kick in, so to speak. It could make the drug less effective if you start and stop taking it before it's had a chance to work. I hope the side effects of pentox aren't so bad for you this time around. If they are managable I'd try to ride it out for a week or so, and see if they begin to subside.
For me, there are some things I stay steady with like ALC. Other things, I even only take them 2 or 3 times a week. I think that only those things that seem to really have potential should be used continuously. Other things can be used on and off. - George
I am no longer with my urologist. That in itself doesn't both me too much and I don't think he can add anything to my current treatment. However, sooner or later I'm going to run out of pentox. Therefore, is anyone able to direct me to a urologist in the UK who is willing to prescribe pentox? If not I would consider buying online, but the trouble there is that lots of sites no doubt send out fake drugs (well some at least), and as i likely wouldn't be able to tell if the drugs i had were fake or not, this could be a problem.
guys - try this mix!!!
1) Pentox
2) ALC
3) Aloe Vera tablets
It really really takes the pain away
I was doing only pentox and acl but since introducing the aloe vera its been really wonderful - 5 days straight with near to no pain
TRY IT!!!
Iceman, Sounds Good! Hope it lasts! It would be interesting to know some specifics though. Like HOW MUCH of each you are taking AND the SPECIFIC BRANDS and PRODUCT IDs of the supplements. Personally, I am just getting over the trauma of a major flareup. The first in a long long time. I currently am lined up for a colonoscopy and quit my supplement regimen in preparation for the procedure. I thought that being off of the supplements for a couple of weeks would be no big deal. Within 48hrs, I awoke in the middle of the night with pain and a significantly deformed you know what. Not only that, but the plaques which had been hard to detect were suddenly greatly enlarged. This whole experience was traumatic for me. I ran and downed a full gram of ALC and within a couple of hours everything was back to normal with no pain and a fairly straight erection as before like nothing had ever happened. So apparently I am succeeding in blocking the symptoms, but not accomplishing a whole lot on the problem in general. I had hoped for better. So at this point I have obtained insurance authorization to see my urologist and am going to be appealing to him for Pentox. I think it has more potential to address the underlying issues than all the stuff I am currently using and it is probably past time that I give it a shot. He has connections at UCSF urology where Lue is and I hope that can help get me in the door with Pentox. - George
George - Wow, that's pretty shocking. I suppose on one hand it does offer further confirmation that the supplement routine really can keep peyronies at bay in certain individuals - but on a more negative note, it appears to have done only that , 'keep it at bay'. The underlying issues appears to remain. This probably does suggest that, for even those with seemingly more stable peyronie's, it may not be the worst idea in the world to take pentox, as there's a chance that it could help make longer lasting improvements 'behind the scenes', rather than other treatments which possibly act as more of a temporary roadblock.
george999:
I am taking 3 x ALC + Pentox + Aloe Vera per day - one in the morning, lunch and dinner - question george999, why have you never taken pentox before - you obviously know allot about the topic and are extremely helpful, so why the delay in pentox????
Also I saw Leu 3 months ago and you will be fine with the pentox - he gave me 6 months supply ; even though I did have to fly 14 hours across the pacific to see him...
Quote from: Iceman on May 31, 2008, 02:06:46 AMwhy have you never taken pentox before - you obviously know allot about the topic and are extremely helpful, so why the delay in pentox????
I haven't taken Pentox simply because I have being doing OK without it. But now it appears that on top of everything else, I have a low level allergic thing going on with ALC that I am going to have to deal with. For some time now I have had unexplained tail bone pain, flu like symptoms and on and off excessive itching which now appears to be being caused by the ALC. And I am not sure that any of the other supplements or combinations thereof can fill in for the ALC. That leaves things like Potaba and Pentox. I personally view Potaba to have an effectiveness similar to ALC. So, all things considered, I prefer to move up to Pentox, which I view as the superior treatment. As I said previously, I already have insurance authorization to see the doctor. Hopefully he will agree to provide me with Pentox. - George
NOTE as of 07/20/08: The above problem turned out NOT to be caused by ALC, but more likely by the particular formulation and brand I was taking. I am now on another formulation and brand and am not having any problems. - George
Quote from: newguy on May 30, 2008, 10:39:59 PMGeorge - Wow, that's pretty shocking. I suppose on one hand it does offer further confirmation that the supplement routine really can keep peyronies at bay in certain individuals - but on a more negative note, it appears to have done only that , 'keep it at bay'. The underlying issues appears to remain.
Yup. Pretty scary. But we are all learning from each other's experiences, and that is a good thing. Also, if the alternative is progression, then "keeping it at bay" is not so bad after all. But I certainly more than agree that it is past time that I start getting more aggressive with this thing. - George
George - I'm still quite shocked at how quickly your conditions returned after you stopped taking ALC. Is your conclusion that the inflammation returned and caused the symptoms to flare up? I can't see how anything more complex could've occured in such a short time. This would also be backed up by the fact that things returned to normal shortly after taking ALC again.
On the plus side, this info combined with a growing number of others posters opinions does seem to suggest that ALC has quite a pronounced impact on both and inflammation. On the negative side, you are understandably quite distressed by all of this. In hindsight you may have missed a trick by not adding pentox isn't the daily mix, but this isn't something you could've possibly known before now.
Newguy, I'm really puzzled in some aspects myself. I don't know whether what happened is just some sort of weird coincidence, but it does seem that the flare up was somehow associated with stopping the ALC. And at this point I also am having to contend with what seems to be a problem with the ALC itself. I never would have suspected that tailbone pain could be caused by something like ALC and then the flu like symptoms that followed. I finally associated the itching that followed all of that with possibly being associated with the ALC. At this point I have cut way back on the ALC and still no problems with the Peyronies. The itching is resolved but the Flu like stuff is intensifying and so I am hoping for a quick appointment and at least Potaba if I can't get Pentox so that I can get off of the ALC completely and find out what is going on with this crazy thing. But I never would have suspected ALC of causing these strange symptoms which started very subtlely and just slowly built up over time. At least I am almost through the weekend. Everything medical gets worse on the weekends. Its the placebo effect in reverse. You KNOW you are not going to have easy access to a caring physician and suddenly death is literally knocking at the door. But hopefully I'll also experience the positive side of the placebo. You know, when you visit the doc and he says "Well, you don't look like you are dying to me." And suddenly you feel like a new man. All the pains melt away in an instant and you feel like a fool for even having made the appointment in the first place. Oh well ... - George
NOTE as of 07/20/08: All of these problems were not caused by ALC as it first appeared. I am now back on a different formulation and brand of ALC with none of the above side effects. The old formulation contained Vitamin B-6 which *may* have been causing me a problem. But it was definitely NOT the ALC that was to blame. - George
george999 - have you ever tried using a VED????
Quote from: Iceman on June 01, 2008, 09:08:18 PM
george999 - have you ever tried using a VED????
Like Pentox, the VED is something I haven't used. All the time I have been on the supplements, I have not had enough of a problem to even justify considering the VED. But who knows? At some point it might be my only remaining option. At this point I am simply trying to find something that will serve me as well as ALC has in the past. - George
George999 - The inflammation aspect of your condition appears to have taken the forefront. I would wonder at the rationale of trying to straighten out something that's 1) already sometimes straight 2) possibly very inflammed when off oral treatments. I could be wrong though, who knows, helping blood into the area could be just what you need. Like you said previously, we're all learning as we go along.
One thought. As well as the other oral solutions you're looking into, could you try taking a different version of acetyl l-carnitine (Propionyl-L-Carnitine, L-Carnitine - the latter may not be as useful/powerful i guess) to see if that has the same effect? You'd likely experience the same flu-like reaction, but maybe not?
I'm glad you're thinking of taking the 'pentox plunge'. When you consider the anti inflammatory nature of the drug, and the symptoms you recently experienced, I think there's every chance it could make a positive improvement.
Quote from: newguy on June 02, 2008, 12:18:33 AMOne thought. As well as the other oral solutions you're looking into, could you try taking a different version of acetyl l-carnitine (Propionyl-L-Carnitine, L-Carnitine - the latter may not be as useful/powerful i guess) to see if that has the same effect? You'd likely experience the same flu-like reaction, but maybe not?
The problem is that it is the "acetyl" in ALC that gives it its beneficial qualities. But the "acetyl" represents "acetic acid" which might present some risks for someone who does not metabolize it normally. And I am quite certain that it is the "acetyl" that is causing my problems and not the Carnitine. So I am also laying of the NAC as well. - George
NOTE as of 07/20/08: Well it was not the "acetyl" or any other component of the ALC. I am now back on a different formulation and brand of ALC and everything is kosher. My apologies to all for the misleading attempt at analysis on my part. - George
George - It's a real catch 22 situation. Maybe there's a case for sticking with ALC at a low level.. though it could follow that the tailbone and flu feelings will eventually return. It seems odd that you're developed some kind of , almost, allergic reaction. How long have you been taking ALC and the other 'acetyls' for? and in what quantities? Maybe it is toxic for some when taken for a certain duration. A break from it, or cycling it with the supplements you're hoping to replace it with could possibly help.
Does propionyl-l-carnitine contain or convert to 'acetyl' at any point? If not, it could be useful to take it, as there is at least some studies suggesting that it can be useful in the treatment of peyronie's (when compared to 'l-carnitine' for instance).
Are you having any luck getting your hands on some pentox? I'm still struggling, as I'm currently looking for a new urologist, and in my experience, here in the UK (and maybe elsewhere), many medical professionals are not exactly open to ideas from patients. I am currently in contact with a website I ordered legitimate viagra from many moons ago. After providing them with relevant information they say that they are able to order in pentox. I know this is very much a 'second best' and am well aware of fake meds being peddled by many websites, but my previous experiences with them tells me that it's worth a shot. I will keep you posted.
Dear all,
Can someone please tell me what kind of Aloe Vera (brand and type) they are using for inflamation and pain. Someone said that in combination with pentox and ALC it has stopped the pain. I purchased Natures Way laloe vera latex and leaf vegie soft gels. However this product may not be the one for inflamation.
My problem is that i have been in pain in the last 6 weeks after using the VED. I have not over pumped or anything. May have been a coincident. I am on
Pentox 2 x 400 mg ( been on it for 14 months with no improvement)
ALC 2- 3 grams daily
san vaso flow 3-5 gels a day
vitamine e 2 x 400 iu daily
ibuprofin 400 - 800 mg daily for the pain
Not to be negative or anything, but this disease is something else. It will sneak up on you and nothing you do seems to help. As soon as you think you stopped the progression it comes back and proves you wrong. Well it is frustrating.
Thanks in advance,
Pal
Pal-31 - That's the twisted nature of this disorder. What works for one person sometimes doesn't work for another. Throw into the mix that the condition is anything but constant, so it's not always obvious why improvements or more negative developments are taking place. Still, assuming you have no negative reactions taking pentox, ALC etc is something of a staple for us. As for Aloe Vera I use a Holland & Barrett version. It's likely only available in the UK though and there is nothing particularly standout about it, so you might need advice from other members here.
As for the VED, do you use it daily? How pronounced if your curve? Is the pain getting worse over time (the 6 weeks period), or is it at a consistent level? If it's getting worse and worse, it might be worth taking a break. Again, see what others think about this as I wouldn't want to be responible for advising someone to stop if the pain is only a slight discomfort?
pal 31 - i really think it was the alc that has reduced the pain level - aloe vera might not be the key factor
Quote from: Iceman on June 02, 2008, 11:48:53 PM
pal 31 - i really think it was the alc that has reduced the pain level - aloe vera might not be the key factor
also your post is really bad - it seems like even the pentox ( which is the most favoured drug development) is not even working - are yoy sure there has been no improvement - surely over this period of time there must have been an improvement in pain - see heres the frustrating part - one person says use the VED and it will help yet you are saying nothing has helped and even the ved ( hich you used correctly) has caused you pain....its just that there is no consistency and everything is so bloody variable its really starting to piss me right off!
I know that this is the oral treatments thread, but I just want to throw in here that drugs and supplements aren't everything. In my experience one can modulate pain and progression to some degree through diet as well. Thus, I suspect that even if we are doing everything "right" on the drug and supplement side, if we are not policing our diet well, we can still have problems. This stuff is REALLY nasty as you all well know. And as one's blood sugar rises, it just gets nastier. - George
george999 - what foods make blood sugar levels rise?? is there really a link between this and Peyronies Disease inflammation?
Old Man and Angus..
My Dr's. opinion was that the upward bend is caused by a long term residual effect of surgery to remove a testicle in 1967 after a botched vasectomy in 1965..altered the blood flow to the pelvic area..He found no evidence of plague..I asked him about VED therapy and his reply was, "Yes, that would be a good idea, and could prevent the condition from getting any worse."
I'm in for the 26 week protocol.. ;D
crank
Making the 1.25" i.d. ved today...However, that is smaller than the cylinders on the Fitzz website..they are 1.50",1.75",and 2.25" on the i.d....I hope it's not too Snug.. :D
I just realized that I posted the above in the wrong forum, but I cannot locate an edit function or delete post function on this site.. Sorry about that..
crank
Crank:
If you want to get the post to another topic, you can copy and paste it to the correct topic. Also, the moderator can move it for you. Right now Hawk, the moderator, is quite busy, but he might have time to do it for you.
Old Man
Crank:
Hey, I just remeasured my Soma small cylinder. The actual measurement is just under 1 and 1/2 inches. It is not a full 1 and 1/2 though as I stated in an earlier post. For some reason, the old eyes betrayed me!!
So, you might not want to make the small to the 1 and 1/4 inches!!!! Sorry about the mixup.
Old Man
Quote from: Iceman on June 03, 2008, 06:04:00 AM
george999 - what foods make blood sugar levels rise?? is there really a link between this and Peyronies Disease inflammation?
What IS known is that diabetes is a RISK FACTOR for Peyronies. Research is also showing that people with frequent blood sugar spikes are prone to some of the same maladies that diabetics are. That is enough of a link for me. Foods that result in blood sugar spikes include all refined sugars in various forms, all other refined carbs such as typical white bread, and starchy foods that convert quickly to sugars in the body. I read EVERY label and it is absolutely amazing how many foods use sugar in significant amounts. Ones that you would never guess. Foods such as Yogurt with its healthy reputation tend to be loaded with sugars. The ONLY sweets I touch with rare exceptions are fruits and sweet potatoes (yams are fine too as long as they are not cooked with sugar of course). - George
Well, to bring everyone up to date, I saw my local urologist today and asked him for Pentox. Instead, after examining me, he gave me Potaba and insisted that he is seeing good results from it. He also insisted that he thinks it will work well for me. Then he told me that if it doesn't work OR if I have some adverse reaction to it, he will immediately write me out a referral to Dr. Lue who he seems to know personally. This sounds like a pretty good deal to me, I have to say, I really appreciate my doc. - George
George
Potaba and 400IU of Vitamin E 3 times a day is what my doctor put me on almost 15 years ago now. Curve went away in about 18 months.
Caution: Watch out for shrinkage as the curve straightens out size can go down about 20%. Use Old Mans VED routine to keep shrinkage to a minimun. I wish I had know of this 15 years ago.
Jackp
Quote from: jackp on June 04, 2008, 04:20:01 AM
George
Potaba and 400IU of Vitamin E 3 times a day is what my doctor put me on almost 15 years ago now. Curve went away in about 18 months.
Caution: Watch out for shrinkage as the curve straightens out size can go down about 20%. Use Old Mans VED routine to keep shrinkage to a minimun. I wish I had know of this 15 years ago.
Jackp
Jack, Thanks for the tip! Actually, while shrinkage would have been a concern for me a few years ago, right now I would be happy to settle for an absence of the fibrosis. And if I can get 15 years of mileage out of that, I will be delighted. I am sure that 15 years from now there will be a lot more treatment options (assuming I am even still around of course). - George
Georeg
The last 15 years have been an uphill battle. The last 5 have been the worst. If i knew 5 years ago what I do now I would have had an implant then.
There is nothing worse on the spirit than 100% impotence.
Thanks to an loyal wife that never complains and the help of a VED I manage sometime.
Don't wait too long! Corporal Fibrosis will sneak up and take over.
Jackp
So Jack, are you saying that you believe that Potaba actually made the fibrosis worse? - George
Actually I guess you are if I read a previous post correctly. I guess my response would be that certainly I will pay attention and watch for ANY adverse indications. As I stated previously, my doctor assured me that he would refer me to Dr. Lue if I had ANY problems with the Potaba. When I said I was not worried about shrinkage, I meant reduction in size. That would not bother me terribly, but any form of fibrosis would. That is what I am trying to get rid of, not exchange one form of fibrosis for another. But I see no reason why Potaba would cause corporal fibrosis. It is really just a modified B vitamin and several members of the B vitamin family are known to have anti-fibrotic properties. I know of none that is pro-fibrotic. But I also know that some of the same factors that drive Peyronies also drive corporal fibrosis, meaning that anyone suffering from Peyronies may also be vulnerable to corporal fibrosis. So it is a possibility that you developed corporal fibrosis in spite of Potaba rather than as a result of it. But in any case, I do really appreciate your spotlighting the issue and be assured, I will be on the watch for any adverse corporal changes. Most of the complaints I have seen regarding Potaba suggest only a simple lack of effectiveness. - George
Incidentally, I am now off of ALL supplements for four days and my Peyronies status is holding stable with no signs of any kind of flare up :) . The brief flare up disappeared with a few ALC capsules and failed to reappear when I ceased taking them. I have no idea as to what the explanation is for this. But that is how things are going. - George
George
I did not mean that the Potaba caused fibrosis.
Three things cause corporal fibrosis, a. lack of night time erections, Venous Leakage and c. injection therapy for ED.
When we loose night time erections the corpora's will start to scar. When the Peronies curve straightens out you will be left with the short side. The penis is less active and then the fibrosis sets in.
Injection Therapy for ED is even worse. You cause scar tissue each time you stick a needle in your penis.
When the ED pills do not work or work well, then you try shots and they do not work well or not at all. By that time corporal fibrosis has taken over.
One other sign of corporal fibrosis is erections that are less firm and keep getting less firm over time. This in my case was Venous Leakage.
If you have a color doppler and the doctor says you have Venous Leakage schedule an implant then, things will go down hill fast from there.
Potaba and Vitamin E are the treatment for Peronies Plaque. In my case the curve straighten out in about 18 months but left me with about a 25% loss in size. (I should have been put on a VED in the beginning not years later).
That is my story. I am now waiting on a referral to Vanderbilt University in Nashville to have a corporal resection and then an implant, a 3-4 hour procedure. Not many doctors are qualified to do this.
That is my story. Corporal Fibrosis is sneaky, be careful.
Jackp
Thanks! - George
As the days pass, I am beginning to suspect that the flu like symptoms that I have been attributing to ALC were actually viral symptoms after all. And that may be an indication that anyone experiencing a viral attack should immediately stop taking anti-inflammatory supplements and/or drugs. Many of these supplements and drugs have the effect of inhibiting TNF-Alpha to some degree and TNF-Alpha is a component of the immune system. Thus, fighting inflammation has the intention of correcting an over active immune system. But that is not something you want to do when you need that immune system to be in top shape. In my case, I experienced probably the worst flu experience in my life in terms of body ache and pain. That all got better when I cut the supplements and surged back when I resumed the ALC. But ALC helps with Peyronies. So that makes me wonder whether ALC also has anti-inflammatory qualities that hindered my immune system from responding to a viral attack and made the symptoms worse. In a similar vein there is now discussion in the research community regarding new evidence that anti-inflammatory treatments appear to slightly increase cancer risks due to the same phenomenon. Everything comes with a price. - George
NOTE as of 07/20/08: Whatever the problem I was having, it appears NOT to have been related to ALC after all. I have been on another formulation and brand of ALC for a full week now with none of the above symptoms. Whatever I was experiencing was apparently linked to the specific brand and formulation I was taking. That formulation did have a Vitamin B-6 component which could have actually been the culprit although even that seems like a stretch. At this point, I am just going to use added caution with Vitamin B-6. - George
AH-HA!!! So I guess the ALC, Mangosteen Juice and other inflammatories that I have been taking actually could be the reason my White Blood Cell count is one whole point lower (3.5 in a lab where 4.5 is the lower acceptable limit) than is should be. My baody may be trying to fight stress or something and is not have a lot of success.
So what about it, George and anyone who cares to comment. Should I lay off the supplements for a few days?
George,
That is scary then. Are you saying that anti-inflamatory like ACL, Pentox, Ibprufin, can lower the imune system and could lead to cancer ? Which of these would be anti-inflamatory ? Are we taking too much of ALC I take 2 -3 grams a day.
Since all of this have minimum effect on my Peyronies Disease, I would rather not expose myself to the risks.
Ideas, thoughts.
Thanks
Pal
The reality is, inflammation is an immune response, an inappropriate one, but still an immune response. There is really no way to quell an immune response without modulating the immune system in some manner. The fly in the ointment is that inflammation itself can cause cancer. So pick your poison. You can contract cancer from allowing inflammation to proceed unchecked AND you can contract cancer by treating the inflammation and thus weakening the immune system. There are no easy choices. My point was that when there is something OBVIOUS going on like something that appears to be a virus OR a known diagnosed cancer, one might be better off to forgo the anti-inflammatories if possible. There are NO risk free choices. Treating a condition carries risks and not treating that condition also carries risks. There is likely SOME safety in avoiding extremes and using common sense. And, by the way, Pentox is a very powerful anti-inflammatory that would definitely affect the immune system and that is why some people here have stopped taking it at times when they felt they needed their immune system in top shape to deal with an issue. The reality is ALL drugs carry significant risks (read the paper that comes with them), and supplements that are effective are really just drugs in disguise and carry risks as well.
Bo, I WOULD DEFINITELY quit the supplements for a week or so and THEN get the test done over. Usually these tests are done multiple times anyway since labs are known to screw them up some times.
Pal, Peyronies thrives on inflammation. ANYTHING that helps with the Peyronies is likely to be anti-inflammatory in some shape or form. The only way to avoid the risk of these oral treatments is to use the VED instead which carries its own risks. In both cases though, the benefits usually significantly outweigh the risks. But that doesn't mean we should not be aware of the risks. - George
Hi All,
Take this for what you will, I thought it was worth reporting though I am sure many may disagree (and certainly some Peyronies docs do). I wasn't sure if I should post this but the discussion below about health effects from the various alternative treatments convinced me it is worth consideration.
I had an appointment with My Uro (who is a well-known peyronies specialist) a few weeks back and I took the opportunity to ask some questions regarding alternative treatments that some people here are using (myself included).
The summary of the conversation is the following, but i should note these are not his words exactly:
Probably doesn't do anything to help:
Vitamin E
L-Arginine
ALCAR
Might do something
Pentox (in early stages)
Potaba
Colchicine (in early stages)
And on Collagenase, might be effective but we probably wont see it until 2012.
I mention this because recently I have stopped taking vitamin e, ALCAR and nearly stopped taking Arginine. ALCAR i stopped taking after 2 years of daily dosing because i think it was giving me some weird memory side effects (tip of the tongue feeling), vitamin e due to recent studies showing increased mortality rates (at high doses), and arginine because, well i keep forgetting.
I still use HGW occasionally (and like it quite bit) and I do actually think Arginine gives me stronger erections.
thissux,
from what you are saying then your uro is in contradiction to what has been posted here - since using alc my pain has decreased allot and i am in much less pain -
Doctors, like all of us, have opinions about supplements and medications. Unlike us, they have some specialized training that puts a little more weight behind those opinions, but in the end, they are still just that, opinions. I don't think that we should get overly emotional in evaluating those opinions. If a particular medicine or supplement seems to be helpful at a given time, then use it and share your good experience. But telling anyone off because of their honest opinion, EVEN IF it may be incorrect, is out of place on this forum. Iceman, please edit and reword your post in a way that reflects the kind of civility that is expected around here. I understand your frustration, but do your venting in private, not on a public forum. It can be unnecessarily hurtful to others and, in the end, it will be hurtful to you if you don't deal with this. I always appreciate your posts, keep up the good work! - George
George,
Very interesting observations... and I am sorry that things are flaring for you.
Previously, I have wondered about your plaque(s). It has seemed odd to me that they can get bigger and stiffer and then regress so quickly. It seems that this cannot be fibrosis - it seems instead to be some sort of acute non-fibrotic change in the elasticity of your tunica (or perhaps some adjacent plane of tissue). I assume that the areas of induration are not freely movable (ie they are not within the soft-tissue plane of the skin overlying the tunica). But I wonder if either the tunica or just deep to the tunica (getting into the corpora) have areas that can somehow swell and shrink for you in ways that are different than the mechanisms of fibrotic change.
This is more than just idle speculation - if it is not fibrosis, then pentox may not be of use to you.
Would it be of value to get a color duplex ultrasound while erect to see what tissue plane is involved? I even wonder about the value of MRI (although that is still fairly experimental, and the consensus in the uro community seems to be that it does not add much for it's cost). Still, to be able to better define the anatomic plane of concern for your case might be really important.
In a way I am glad that you determined that you had a cold (sorry for you though!). Although it is interesting to speculate that the immune system is overmodulated, it may be reading too much into your ups and downs. Similarly, I don't think a white count (Bodoo'd) could be held down either (and one point or so is a trifle anyway).
Glad to be back and catching up.
Tim
Tim, I suspect, in answer to your question, that my plaques are actually NOT changing in size at all. But rather, what is changing dynamically is the level of inflammation surrounding those plaques which causes them to FEEL larger or smaller depending on how inflamed they are at a particular point in time. In the case of someone with a relatively stable level of inflammation, they would not notice any rapid changes in the size of the plaques. However, I suspect that for whatever reason, my inflammation levels are rather dynamic at times and the changes are extremely obvious. At this point, I am gradually adding a FEW key supplements as I perceive the need. For example, after a week or so without healthy night time activity, I felt that this was not a healthy thing to continue and so I added back the VasoFlow and the HGW. Without two days all that has returned to normal. The leg pain has receded to almost nothing and so tomorrow I am planning to go ahead and schedule the colonoscopy and get that out of the way. I am also planning to hold off on the Potaba and ask my uro for a referral to Lue for an evaluation and second opinion on whether to go with the Potaba or the Pentox. I am really not looking forward to the 6 or 7hr trip to San Francisco, but I really don't feel comfortable with a long regimen on Potaba either when the pharmacology of Penoxifylline looks so much better to me. As for the ALC, I really don't know myself what was going on there, but I felt it my duty to post the information, since it seemed to me an indication that I should have quit the ALC a lot sooner than I did and should have waited for the symptoms to correct before attempting to restart it. As for the future in terms of the supplements, I remain convinced that the underlying cause of Peyronies is actually a matter of metabolic abnormality and therefore plan to continue using both diet and supplements to try to force that back in line. And, in that vein, I actually consider diet to be a far more potent tool than supplements. After all, in my own case at least, it was bad diet that got me where I am, and it will likely be good diet that will be most useful in effectively reversing the damage. And that is a matter of gradually correcting a whole universe of anormal levels of hormones, proteins, enzymes, and other exotic substances within my body. And even if that is not "doable", at least I should be able to pull them closer to normal and keep them from moving more in the metabolic syndrome direction and in my mind, every little bit should provide worthwhile benefits. Welcome back! Thanks for sharing your thoughts! I wish you the best! - George
UPDATE AS OF 07/20/08: The problem with the ALC turned out to be linked to the specific formulation or brand. I have currently been taking another brand and formulation at the same dosage level for a week now with no recurrence of the problem. - George
OK I'm new here. I'm freaked out. I'm concerned. & I guess I now have this disease. I'll be making a doctors appointment next week and from there probably an appointment with a urologist. In the mean time I'm researching and since y'all seem to have varying degrees of the same problem (no pun intended) I'm betting y'all have the best information.
SO has anyone tried any of these natural supplements? Neprotax Pyrotab Peyrotine.
A little info: 49 years old, I don't recall hurting myself. It looks broke when erect, bending down. Some discomfort when erect.
Any advice?
Thanks
Mustang, Forget the Pyrotab stuff. Its a well known useless rip off. - George
tim468,
my uro told me that i had atypical pyronies and that the injury was on the support structure ( almost like the support beams) and not on the top - will this affect ved usage??
george999 - why dont more people use VED if its is proven to be so successful? How come we do not hear of enough success stories regarding its usage - where do the people go who have had success with Peyronies Disease treatments whether oral or VED
Quote from: Iceman on June 08, 2008, 07:15:43 PM
george999 - why dont more people use VED if its is proven to be so successful? How come we do not hear of enough success stories regarding its usage - where do the people go who have had success with Peyronies Disease treatments whether oral or VED
Hi Iceman,
I think this is a common thread with all illnesses. Often people that have success with a treatment for an illness don't post and don't visit forums and often don't even go back to their doctor. This is one reason why I have stopped googling various symptoms and ailments (non peyronies related) because you usually only read of the worst cases. Sadly not many people come on to say "this worked for me" or "there were no side-effects".
TS
OK one down. Thanks George.
Iceman,
Your uro's analogy is sort of lost on me. In general, I would ask a doc to explain in terms that I could understand, but to also please write down the relevant technical terms so that I can later look them up.
In this case, I am really not at all sure what he meant by "support structure". In any event, I think that a VED is a good way to go - little downside and potential help.
Tim
has anyone thought of using aloe vera or emu oil ( which is said to have powerful healing benefits) plus dmso - just a thought...:)
Iceman:
My belief as to why guys don't report their success with the VED is the same for just about therapies that have been tried and worked. There has been success with oral therapies as well as other methods, but those that had the success never seem to come back and let the forum know.
In the case of VEDs however, some guys are just reluctant to put their tool into a tube and pump pressure on it. My first encounter with the VED in my uro's office did not work out so well either. After I got home with the thing, I spent about two days working with it until I got "used" to the feeling of added pressure. Since that time I have had great success with the curves and other symptoms and at present I am just as straight as I was before Peyronies Disease struck.
Maybe those having success will come back and let us know the whys and wherefores of how much success they had and how they got it.
In the meantime, those using VED therapy should keep it up and at least keep their penises healthy from the blood flow standpoint.
Old Man
The VED has another additional major problem. That is, it is not a like a drug that can be patented and sold at a huge profit in order to pay off clinical trial debt. That being the case, who in their right mind would put money into actually testing it to verify its effectiveness. The business model for such an endeavor simply doesn't exist. Who knows how many potentially effective treatments for a long laundry list of diseases have suffered the same fate. Major medical institutions are in business to make money, NOT to heal people. I am truly convinced that a large number of doctors are sincerely in business to heal people, but medical corporations have NO social conscience. Their only obligation is to their stockholders, and they are the only institutions with the wherewithal to drive medical innovation. Its that simple. - George
Also, I think people are generally sceptical of physical solutions to problems. We live in a society where 'popping a pill' is seen as the primary solution to everthing. Of course medication can play a role, but 'there's more than one way to skin a cat'. Where pyhsical solutions for problems are concerned most people think of 'operations'.
The VED takes time and dediction, which sits at odds with a quick fix culture. Many people give up before they have given it a chance to work, and therefore they develop a somewhat false view of the treatment. As has been pointed out previously, where results are achieved, most people do not feel the need to share their success with others. It also has the unfortunate 'sex toy' reputation.
Perhaps the greatest shame of all of this is that even some urologists sneer at VED useage. If they put their preconceptions aside for a moment and thought about the process behind the VED useage, they'd perhaps come to the conclusion that it can be beneficial.
George999:
I am truly sorry that you take the position that you do about VED usage. Just think where you might be now if you had started using a VED when you started all the OTC pills, herbals and supplements that by now you must have consumed. Consider the cost of all that, and IMHO they would add up to much more than the cost of a good medical quality VED. VEDs can be "sex toys" to some folks but to Peyronies Disease sufferers, they could be the total answer.
I know first hand about taking, oh, so many pills and other treatments to get rid of Peyronies Disease symptoms. Over the years that it has been with me, believe me, I know the drill. All of the things that I tried did absolutely nothing.
For example, I took 13,000 Potabo pills (6 pills each dose, four times a day, 13 bottles of 1,000 total) with absolutely nothing is return but many side effects. So, before you write off the VED, remember the old saw, don't knock it if you have not tried it!! A lot of guys have seen good benefits from its use, if nothing more than to keep their penises healthier.
Respectfully, Old Man
Old Man, Something obviously got lost in the translation here, because I have nothing but good things to say about the VED. True, I haven't used it, but I haven't yet used Pentox either. And at this point I have neither size reduction or curvature to justify VED in my opinion. But I darn well think that it is VERY effective. My point was that, unfortunately, it hasn't really gotten any attention in the research community because nobody can make any money off of it. If it were a new drug, not nearly half as effective, somebody would be throwing millions into it. I actually think that it is very unfortunate that doctors are not openly promoting VED use for Peyronies. So, don't think I am anti-VED, as I am most certainly not. Not even neutral. I fully support its use. - George
George999:
Touche!
Old Man
Anyone else got any thoughts on these supplements? Neprotax Pyrotab Peyrotine?
mustang - forget those wate of time supplements - especially pyrotab - its made in pakistan - youll poison yourself
TRY THESE INSTEAD - they work for me:
1) L Arginine
2) Acetyl L Carnitine
3) and most importantly - PENTOX ( gotta go to a URO for that )
these are the best options on the market in my humble opinion but definitely for forget the other crap sold online - waste of money and time
big hello to everyone,
my question is does anybody actually know of a reputable source of Trental / Pentox (pentoxifylline) other than through the urologists?
There are (unbelievably i know) a fair number of uros who won't pescribe it because they don't believe it is an effective / valid treatement or otherwise. that is at least the case in the UK. I am aware it is far easier to get a script for it in the US. Therefore rather than trawling my way through 4 or 5 uros before finally getting a script (which of course i wil do if nessacary) I would greatly appreciate if anyone knows of a genuine online source (or otherwise).
below are a few example sites I found alledgedly selling trental :
http://www.meds24-7.com/trental.html
http://1100drug.org/index.php?p=drug&drugBrandId=658
http://www.generic-drugs-online.com/generic-Trental.htm
http://www.drugdelivery.ca/s3659-s-TRENTAL.aspx
Now i think I should inform you that i have infact ordered pentox from the last online source (yes w/o a script) - from their european supplier. It arrived swiftly and everything was there that i ordered. itwas a pentoxifylline brand called Trentalin (turkish). My problem was that everything was in turkish (aside from a note included in the pack explaining directions of use etc) and almost gave it a fraudalent look to it. in all fairness im probably being paranoid and it probably was genuine pentoxifylline but how can one be sure it's not just a rip off? I only ordered a bit as a test but am looking to buy in bulk now and wanna make sure i get the right stuff. Thoughts or suggestions anyone?? - and dont say go to anotha uro lol.
PS: if anyone does know of a decent uro who pescribes pentox in the south of England let me know as that would resolve the entire problem.
peace ;)
Swoosh
swoosh - i got trental 400 in australia from my 3rd uro I visited ( it was prescription ) - the first 2 didnt know too much except for vitamin E and a hefty fee at the end of the 5 minute consultation that left me absolutely shaking with fear in the car park - I would be extremely dubious about anything from turkey that you bought online - sounds like a rip off very much like pyrotab from pakistan - can you see the similarities??????
cheers
I don't have an answer. There are reputable providers of medications in India that work off-patent (and Trental is off patent already anyway). If the process used to make a drug is not unique, then by Indian law, it is not protected. I have not (yet) made such purchases, but I note the the World Health Organization has approved some drugs made in India for treatment of HIV in other third world countries in Africa (this was very controversial because of the patent issues). I figure that if the manufacture of drugs by a company passes muster for WHO, then it will probably e good for other stuff too.
More on the topic at: http://www.cptech.org/ip/health/aids/
Cipla makes cheap Trental and it is offered through several European or Indian online pharmacies.
Other possibilities:
http://www.elitenetpharmacy.com/pd_trental.cfm
Tim
yea i know what you mean iceman when i think about it i can see the similarities. only bought a bit anyway see to what its like. well I think that if one was to buy online then the link tim provided to elitenetpharmacy should be a good bet after checking it out. it certainly holds more promise than other suppliers. I think i will order some and check it out and i ll be sure to let you know how it goes!
Fellas,
I went to see a urologist the other day, and he was a very nice fellow. He didn't know half of what I know (thanks to you guys) about Peyronies Disease, but he listened during the time we spent together. He even gave me three months worth of Pentox, and (this is the good part) he is the friend of a nearby doctor who is affiliated with a company conducting a study on collagenase.
He talked to the trial-study doctor on the phone and gave him my name and address. The doctor is going to send me the study literature and the application via mail. The only thing I'm worried about is that not everyone gets the collagenase. Three-quarters of the trial participants get it, and the other 25 percent get interferon. Well, I'm also worried about the damage that can be caused by injections in the penis. I mean, what if I get the Interferon and wind up with more damage from the injections. That would be devastating for me, since I have the worse kind of Peyronies Disease; the kind that angles to the side, instead of up or down.
What do you think? Should I participate if I am accepted? And should I stretch out the Pentox to six months by taking one 400mg tablet each day, instead of twice daily?
Great questions, Bodoo,
First off, you hit a homerun with your doc - keep him as your ally!
Tough call about participation. Try talking to the docs involved and make your choice. If it works, then everyone will get study drug when they move to open label phase (no longer blinded with a placebo). So you will eventually get drug - and recall that interferon has helped some men as well.
Tim
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After a recent flare up with the inability to tolerate ALC any longer, Mangosteen extract seems to be kicking in to do the job for me. Things are stabilizing after I resumed taking the Mangosteen capsules and doubled the dosage. AND, I now have a referral in hand to see Dr. Lue. I am very happy about that and am hopeful that he will grant me access to Pentoxifylline. - George
NOTE: As of 07/20/08 I have been back on ALC (a different brand and formulation) for a full week without any problem. Thus, it seems the problem was with the formulation or with the specific brand and NOT with the ALC itself. - George
george999 - i went to see Dr Lue and Im sure he will give you the Pentox - I flew across the Pacific from Oz to have an appointment - also can you send me the link where to buy mangostten capsules - i can only find the jusice.
thx
These are the ones I am using now:
NSI Mangosteen Extract -- 500 mg-120 Capsules (http://www.vitacost.com/NSI-Mangosteen-Extract)
Recommended dosage is ONE A DAY, I am taking FOUR A DAY spread out through the day.
In the past, I have used this one and might go back to it:
Natural Factors, Mangosteen, Super Strength Extract, 250 mg, 60 Capsules (http://www.iherb.com/ProductDetails.aspx?c=1&pid=7261)
This one appears to have less strength than the one above, however, if you look closely, you find that it actually contains more of the Xanthones which are the active ingredients.
Thanks for all the feedback, Fellas.
Can anyone tell me how long it will be before Pentox begins to take effect? I have been on it for nearly two weeks and I am sure that after the first day or two I noticed that I was fuller when I was flaccid. What I am asking about is when will it begin to change the shape of my blood cells, if that is in fact what it does. I'm just curious about that. I realize that it's something I will not be able to see.
Thanks again for your responses.
Tim, so far I haven't received any literature from the people who are doing the trial study on collagen's, but I keep watching for the postman every day.
Bo
George I would recommend that you drop the NSI brand. they are a very shady and dishonest business.
Thanks for the tip on NSI. I don't know what you know about them, but I am beginning to suspect that there may be problems with there operation. I really was not having any significant problems until I started using their products. That may easily be a coincidence or perhaps not. In any case, I will not be ordering any more of their products. - George
A question or two for the group. I just started taking my Pentox Rx,
400 mg 3 X day. Question 1, after having this wonderful disease for
over 3 years will it do any good???? Question 2, does this Rx have
a side effect that makes a person a little dingy???? Musicman
As one who is NOT YET taking Pentox, but who PLANS to begin taking Pentox, let me try to take a stab at Musicman's question.
1) Will it do any good?
The results with Pentox, as I understand it, are not really conclusive. It seems to help some people more than others. It also takes a long time to demonstrate its effectiveness. Also, one has to ask here, what do you mean by "Will it do any good?". Do you mean "Will it make it better?" (This is what most people mean). Or do you mean "Will it keep it from getting worse?". If you really think about it, the second option is really not so bad considering the choices. And 3 servings of Pentox certainly beats 24 servings of Potaba in my book. AND, I would bet it would be a bit easier on the pocket than Potaba to boot. There are a LOT of factors that go into Peyronies Disease. Pentox multitasks well by effectively tackling a few of them. But there are other factors that almost certainly would modulate the ability of Pentox to be "effective". And only you can control *some* of those factors.
2) Side effects?
Who knows? Here again, this probably varies from user to user.
You will probably get a better picture on this as people who ARE using Pentox and those that have used it in the past and dropped it. Personally, I don't know whether I will even be able to tolerate it, but I am certainly going to give it a shot. I think its pharmacology is just about the best out there for fibrotic diseases like Peyronies (with the exception, of course, of treatments still awaiting approval). In that vein, I suspect a future combination treatment with Perfinidone, Collagenase, and Alagebrium. Now that would be a dream package! - George
hi musican,
Ive been on Pentox for 4 months now and in the beginning it made me very tired but not anymore - Im used to it and take it 3 times per day with meals - as my pain is now non existent I think that it has helped me in this way - I was really beginning to stress about the pain> From the moment I got into my car in the morning throughout the whole day I was in pain - now nothing ( thanks god!!)
Also, with the Pentox try L arginine and ALC....
Keep me posted
Lets hope the VED I bought and the advice I follow from old man will help me -
I've been on Pentox since Dec 2007. I noticed no side effects, even at initial usage.
Has it helped... Not that I know of since I still have curvature.
Did it keep things from getting worse. Well, I am the same now as before so I can't tell you one way or the other.
Quote from: lwillisjr on July 02, 2008, 04:05:28 PM
I've been on Pentox since Dec 2007. I noticed no side effects, even at initial usage.
Has it helped... Not that I know of since I still have curvature.
Did it keep things from getting worse. Well, I am the same now as before so I can't tell you one way or the other.
I am not sure how you have determaned that the Pentox has helped.
If you have no change for the better I don't think that means it is working.
I for one am looking for improvement as for me I don't think I can get any
worse off than I am. Maybe if I see a small improvement in my angle I could say
that it is working. I can say that I think the VED has improved some of the
hourglass so I do think the VED is helping. The VED does not seem to have
helped with the bend at this time. ( 5 months into the VED )
Musicman
Some interesting posts here. Maybe as a group we should be asking ourselves, has anybodys condition got worse while they have been taking pentox? A number of people here take pentox, so do any of you fit into this category?
When it comes to Pentox, I think one also has to take an even deeper look by examining the pharmacology of Pentox and the effects it has on the body. At this level, the major effect of Pentox is likely its ability to block cytokines like TGF-beta-1. This is very important in the case of Peyronies because if you can block the cytokine activity, you can theoretically block the disease's progression. Personally, I will settle for that any day. But it also means that you can open the door to progressive (but glacially slow) improvement as collagen turnover progresses and new collagen is not destroyed by cytokines. It also provides freedom from the pain caused by cytokine fueled inflammation. On a secondary level, Pentox should significantly improve oxygenation of tissues via its ability to modify the characteristics of red corpuscles. This would also improve the possibility of more normal collagen turnover taking place and would further limit the likelyhood of further inflammation and progression. All this would seem to indicate to me that although Pentox is not a cure, it is definitely a useful tool in dealing with Peyronies. To those who argue for surgery, I would warn that surgery is not a guaranteed cure either although, in many cases, it can result in some degree of improvement. The downside is that, from what I have observed, the failure rate is still quite high and, even in the case of success, the condition may well reassert itself in the passing of time. The reality is the options are few, and that would make Pentox look pretty good to most of us. AND, there are things that can be done in concert with Pentox, like Old Man's VED regimen for example, that most assuredly CAN achieve regression in terms of symptoms. And I think Pentox can be an important adjunct to VED therapy with its ability to further prevent more inflammation and scarring. - George
when you talk about surgery do you mean correction surgery or penile implants?
Quote from: Hitman on July 03, 2008, 01:30:41 PM
when you talk about surgery do you mean correction surgery or penile implants?
Both
The big problem as I see it is that Peyronies is never guaranteed to be 100% stable. This can have a huge impact on the long term effectiveness of correction surgery. As for implants, in my less than expert opinion, they carry their own set of risks. - George
Quote from: George999 on July 03, 2008, 09:10:49 PM
Quote from: Hitman on July 03, 2008, 01:30:41 PM
when you talk about surgery do you mean correction surgery or penile implants?
Both
The big problem as I see it is that Peyronies is never guaranteed to be 100% stable. This can have a huge impact on the long term effectiveness of correction surgery. As for implants, in my less than expert opinion, they carry their own set of risks. - George
the implants seem to have a high success rate and the technology is improving though.
Hitman:
Yes, implants are now enjoying a greater rate of success than in the past. New technology is being developed all the time and the newer models carry less risk of anything going wrong. The biggest risk is getting the proper sizing when the implant is done. Any good uro will make sure that you are fitted with the proper implant.
There are several companies making the implants and have had good success as I said above. Just be sure that if you are considering an implant that you are absolutely sure that one is right for you. Implants are not reversible and once done, you are "stuck" with it!
They do have their place in sexual health for men who cannot have sex any other way. The surgery is really not all that bad, recovery is based on each man's physical health and above all, if done do not engage in sex too early after surgery so as to not cause complications. IOW, don't get anxious and jump off the deep end early.
Old Man
Quote from: Old Man on July 04, 2008, 09:00:49 AM
Hitman:
Yes, implants are now enjoying a greater rate of success than in the past. New technology is being developed all the time and the newer models carry less risk of anything going wrong. The biggest risk is getting the proper sizing when the implant is done. Any good uro will make sure that you are fitted with the proper implant.
There are several companies making the implants and have had good success as I said above. Just be sure that if you are considering an implant that you are absolutely sure that one is right for you. Implants are not reversible and once done, you are "stuck" with it!
They do have their place in sexual health for men who cannot have sex any other way. The surgery is really not all that bad, recovery is based on each man's physical health and above all, if done do not engage in sex too early after surgery so as to not cause complications. IOW, don't get anxious and jump off the deep end early.
Old Man
sure. I was only considering it as a last resort (in the coming 5-7 years or so)
Hitman:
My mother-in-law's last husband had a penile implant done and they were both tickled pink with the outcome. He lived about 8 years after the surgery and according to his words, "really had a ball in the bedroom with it". Only have his words for it, but I am sure he was right.
His was the last resort since all other methods of relief for him failed.
Old Man
Quote from: Old Man on July 04, 2008, 04:11:32 PM
Hitman:
My mother-in-law's last husband had a penile implant done and they were both tickled pink with the outcome. He lived about 8 years after the surgery and according to his words, "really had a ball in the bedroom with it". Only have his words for it, but I am sure he was right.
His was the last resort since all other methods of relief for him failed.
Old Man
how old was he?
hitman:
He was 74 when the surgery was performed. He died as a result of a knee replacement surgery that went bad. A blood clot formed in his blood stream and went to his lungs and heart shutting them both down.
He had the AMS 700 luxury model implanted. It was/is the three piece unit where the rods are implanted in the corpora, the reservoir in the abdomen and the pump inserted in the scrotum. Look up the AMS medical company on the Web and you can see the latest update to the implants devices. You could Google penile implants and it should take to a link to AMS.
As I said, they enjoyed having the implant done for years before he passed away.
Old Man
There are lots of helpful supplement including herbs that are worth to take, but lots of them contain more or less amount of calcium. My question is: does the income of calcium to body make the scar tissue more calcified? Does it worsen the whole condition? I take pills of the whole complex of Vitamins B and it contains calcium, also a herb called Alfalfa which I drink twice a day contains a lot of it.
Thank you very much.
Quote from: Ralf3 on July 06, 2008, 10:03:29 AMMy question is: does the income of calcium to body make the scar tissue more calcified?
In a word: No.
The problem is not your calcium intake, the problem is in how your body utilizes the calcium. In the case of Peyronies, inflammation is causing calcium to deposit in the inflamed tissue. You can not stop this from happening by reducing your dietary intake of calcium. The solution is more related to stopping or at least lowering the level of inflammation going on. The current gold standard drug for lowering inflammation is, of course, Pentoxifylline. But there are other things you can take that should be helpful in that regard. Right now I am using Mangosteen and I do believe that it is helping. But I am hoping to be able to get access to Pentoxifylline soon. - George
Quote from: George999 on July 06, 2008, 12:24:35 PM
Quote from: Ralf3 on July 06, 2008, 10:03:29 AMMy question is: does the income of calcium to body make the scar tissue more calcified?
In a word: No.
The problem is not your calcium intake, the problem is in how your body utilizes the calcium. In the case of Peyronies, inflammation is causing calcium to deposit in the inflamed tissue. You can not stop this from happening by reducing your dietary intake of calcium. The solution is more related to stopping or at least lowering the level of inflammation going on. The current gold standard drug for lowering inflammation is, of course, Pentoxifylline. But there are other things you can take that should be helpful in that regard. Right now I am using Mangosteen and I do believe that it is helping. But I am hoping to be able to get access to Pentoxifylline soon. - George
My HMO ran a 24-hour urine test for Calcium. Here's the results for me:
Component Your Value Standard Range
CALCIUM RATE, 24 HR URINE 234 50-250 mg/spec
Test Overview
A test for calcium in urine is a 24-hour test that checks the amount of calcium that is passed from the body. Calcium is the most common mineral in the body and one of the most important. The body needs it to build and fix bones and teeth, help nerves work, make muscles squeeze together, help blood clot, and help the heart to work. Almost all of the calcium in the body is stored in bone. The rest is found in the blood.
Normally the level of calcium in the blood is carefully controlled. When blood calcium levels get low (hypocalcemia), the bones release calcium to bring it back to a good blood level. When blood calcium levels get high (hypercalcemia), the extra calcium is stored in the bones or passed out of the body in urine and stool. The amount of calcium in the body depends on the amount of:
* Calcium you get in your food.
* Calcium and vitamin D your intestines absorb.
* Phosphate in the body.
* Certain hormones, including parathyroid hormone, calcitonin, and estrogen in the body.
High calcium levels in the urine can cause kidney stones.
Vitamin D and these hormones help control the amount of calcium in the body. They also control the amount of calcium you absorb from food and the amount passed from the body in urine. The blood levels of phosphate are closely linked to calcium levels and they work in opposite ways: As blood calcium levels get high, phosphate levels get low, and the opposite is also true.
It is important to get the right amount of calcium [at least 1000mg(1g) a day] in your food because the body loses calcium every day. Foods rich in calcium are dairy products (milk, cheese), eggs, fish, green vegetables, and fruit. Most people who have low or high levels of calcium do not have any symptoms. Calcium levels need to be very high or low to cause symptoms.
===================================
They also did 8 blood samples:
TESTOSTERONE, TOTAL
ALKALINE PHOSPHATASE
CALCIUM
TSH (THYROID STIMULATING HORMONE)
CREATININE, SERUM
ALT (ALANINE AMINOTRANSFERASE), SERUM
PHOSPHORUS
ALBUMIN, SERUM
I was within the High/Low Levels of all these blood tests.
Billy
aerosick,
The information regarding calcium was helpful in that it underscores the fact that Ca is stored in bones. If we drop our intake, our body will simply liberate more from bone if it is needed for wound healing (admittedly, abnormal wound healing) in a plaque.
So decreasing intake will not reduce a tendency to calcify - if one in fact has a tendency to calcify. Many Peyronie's lesions do not calcify at all.
Your Ca excretion is at the upper limits of normal - probably OK, But if one had wound turnover (or excessive intake) one might find higher urinary calcium levels. You have done well to have such a complete workup.
Tim
in big pain today and I dont know why - it comes it goes where it stops nobody knows -
Iceman:
Just make sure that you are not using too much pressure when using your VED therapy. Sometimes that can cause pain or discomfort and that is the main reason that we caution everyone using the VED to watch the pumping.
Take a good hard look at the way you are using the VED and you might find something that is not going right for you.
Old Man
oldman - that was meant to be a bit of a poem:)
anyway i think im ok with the ved - it seems to be working all right getting the vacuum seal - ill be extra careful on the pumping - i think that i am cautious however...
Has anyone else noticed better, more frequent, more easily achieved erections while on Pentox (or Trental)?
I started a regimine of L-Arg, ALC, PLC, Zinc and Pentox (just one a day) about 4-5 months ago. As noted on the ED forum, I witnessed a return of nocturnal erections and easier achieved, faster erections, which enabled me to stop using viagra for sex. I was never sure if it was the Aginine/ALC/PLC or the Pentox that was helping me, but I didn't want to fool around with the mix to find out.
Then a couple weeks ago I ran out of Pentox and my new supply has been slow getting here, so I've been off the Pentox. I am now noticing a decrease in nocturnal activity and my erections are somewhat harder to achieve for sex. This leads me to think the Pentox may really be the key for me. I've read in several places that Pentox has been used (primarily before Viagra came out) as a treatment for ED, since it gets blood into the penis (and other lower extremities.
Just wondering if anyone else has had these good benifits from Pentox/Trental? I've got to find a Uro who will prescribe it for me so I can quit having to order from a foreign pharmacy.
Nemo
It seems like Pentox is available from more doctors these days, especially from Peyronies specialists, but there are still some areas of the world that don't have access to it. It would seem like there is a need in those locations for people with Peyronies Disease to band together and identify a Peyronies specialist or research uro in their part of the world and petition that person as a group, including well prepared supporting documentation. I think a lot could be accomplished in this sort of approach. - George
While we're on the subject of Pentox, is there any reason why I shouldn't cut back to one 400mg pill a day. My doctor prescribed it at my request, and gave me a three-month supply at twice daily. I'm thinking that I can make it last longer if I take it only once a day, but I don't want to miss a chance for healing.
Can anyone tell me if dropping back to one a day will be detrimental to my progress?
While I think no one really knows the answer to your question, I'd stick with what the doctor prescribed you as it sounds like you'll be able to get a refill from him/her when it runs out.
Interestingly, when I had a phone consult with Dr. Levine a few months ago, I asked him for the name of a good Uro in my area. He gave me a name and as I've run out of Pentox myself and my Uro won't represcribe it, I called up this Levine-recomended doctor to schedule an appt. I asked the nurse to ask if he prescribes Pentox for Peyronies Disease ... the answer I got back was "he's familiar with it but says the results aren't very good" ... I got the distinct impression I'd have to convince him, so I'm cancelling the appt. The quest goes on ...
Nemo
Hi,
I am a new member in this forum and i am from germany an my english is very bad, please excuse me for this.
10 days ago, over night, I fell ill with Peyronie's is "Induratio Penis Plastica (IPP)" or "penile induration".
It's a big area around the end of the glans. There are palpable hard skeins and sometimes it hurts by light pressure.
I read something about Vitamine E an PDE-5 (Viagra). I read, that Viagra should have a good healthy-errect, so I try now 50 mg Viagra daily combinated with high Vitamine E dose.
My penis-bend is not very big until now.
Are there some positive results about Viagra-therapie reported?
Whats about spontaneous recovery?
Thanks for help!
Welcome, "Al - the King - Bundy" ( I love the new names I see here)...
Read the "Child Boards" and you will find a lot of helpful information. Hang in there - you will see that a lot of potential help is there - for most of us we have faced several defining issues:
First - is it really Peyronie's Disease? To be sure (for some folks self-diagnose and get it wrong)
Second, have you been seen by a good urologist? "Good" is subjective, but many of us need to search to find one willing to provide us supportive help.
Third, are we really well-informed? This is where we can do a lot to learn more here.
Four - don't make hasty decisions or choices. This is the time to sit back and to gather some information before acting. I say this with one exception - most of us feel that regular erections are good for erectile tissue (use it or lose it, they say, and it may be true for Peyronie's Disease). Therefore, getting better blood flow with viagra (or other similar drugs) may help as well as using the VED which will pull fresh blood in as well as stretching out the tissue to prevent or fix contraction and worsening of the angle.
Welcome! Read up here and I hope this post helps!
Tim
Hi Tim,
thanks for your help. yes, I visited a very good urologist, i know him since 10 years and he confirmed, that I have Peyronies Disease. I will read the Child Boards, and I am sorry, that I did not read it first, but I am very scared about my disease. Al Bundy should be happy about it, because he does not like having sex, but for me its very importeant for a good life.
Thank you for your help.
Youre Al
As those of you who follow this thread are probably aware, I recently had a mysterious reaction that I thought was being caused by ALC. But, in response to the cooler heads around here like Tim, Hawk, and Old Man, I decided to try switching to another formulation and brand of ALC. So far I have been taking the new brand for a week now with no adverse effects. Obviously, the problems I was having with the previous product were not being caused by the ALC content. The previous brand DID contain Vitamin B-6 in addition to the ALC and it *might* have been the B-6 that was causing my problem or any one of a number of other possibilities. The new brand is an ALC/ALA combination (thanks for that tip! :D). In any case the problem was NOT being caused by the ALC itself. I certainly want to apologize for the mini-panic I caused here with my bizarre speculations and again thank those who stepped in to steer me toward a resolution. My appointment with Dr. Lue is coming up this Friday and even though I am back on the ALC, I intend to keep the appointment with Dr. Lue and hopefully get started with Pentox. In a way, I really feel badly about this episode. I was at the point of having very little palpable plaque, zero pain, and a moderating upward curve. Now, after just a few weeks of being off of the supps, I have a new leftward curve and lots of pain and new plaques. :'( Oh, and plus a urinary tract infection. It was like being run over by a trunk. At this point things are starting to get better, but once the inflammation kicks in, it is like pulling teeth to get it back under control. - George
George999:
Glad that you have gotten somewhat back on track with your treatment routine again. I know that in the past you have told us you did not desire to use the VED therapy, but why don't you give it a try one time to see it would not help with your Peyronies Disease?
Inflammation can be bad at any time in any part of one's body as it causes many and varied problems. Have had a bout with my legs and left knee swelling bad lately. Talked to my heart doctor about getting off Pravastatin. He DCd it and RXd Lipitor. The same effect, so the inflammation comes back every time I take either drug. He and I will be having a round table discussion about trying something else soon.
Take care and good luck to you on the road to get back to where you were, etc.
OldMan
Don't worry, the moderators will take care of it, but after this do try to be careful about this because it degrades the value of the threads and makes extra work for the moderators when we do these things. - George
:o
I just saw this link: http://www.urotoday.com/3351/browse_categories/peyronies_disease/acute_hepatitis_associated_with_treatment_of_peyronies_disease_with_potassium_paraaminobenzoate_potaba__abstract.html (http://www.urotoday.com/3351/browse_categories/peyronies_disease/acute_hepatitis_associated_with_treatment_of_peyronies_disease_with_potassium_paraaminobenzoate_potaba__abstract.html)
It'd be nice if someone had access to the entire paper to see what the details are?
Steve:
I notice that you have been on the VED therapy for over 75 weeks now and you say still pointing North. Have you experienced any positive results at all from this long period on the VED regimen.
Also, would you let us know which model VED you are using, whether or not is a one cylinder or three cylinder model. Perhaps home made VED?
Old Man
Steve and Old Man
When my Peronies started in 1995 the uro put me on Vitamin E 400 mg three times a day and Potaba.
I have read the article and only six (6) men had a liver problem and no investigation of anything for the cause and blamed Potaba.
I was on Potaba for about 18 months and the curve straightened. Blood test along the way have shown no liver damage. Even the last blood test for testesterone level the doctor checked my liver and all was normal.
I also noticed the signature on the document was not an MD.
Potaba may be an old treatment but it worked for me.
Jackp
Steve:
I took 13 bottles of 1,000 potoba tablets, 6 at a time 4 times a day. Had no liver or other problems, but had no reaction for my Peyronies Disease either. Just a few upset stomachs along the way.
Old Man
george999 - ive been on ALC for the past 4 months and Im unclear about its effectiveness - what is ALC and whats it meant to achieve for Peyronies Disease...?? btw - had Peyronies Disease for the past 6 months and pain is randon - some days good some days bad - will there ever be a light at the end of the tunnel where the pain will never be there ( maybe this is too hopeful)
many thx
Does anyone know the exact mechanism of aid from Viagra? One of my Uro's mentioned that PDE-5 was a helpful compound to have in the bloodstream vis a vie my fibrosis, but my other (regular) Uro only made mention that it was beneficial for providing more blood to the affected area.
At $15 a pill I can't afford to take even 1/4 a day medicinally -- I generally take 1/4 or 1/2 of a V when I feel unready, for whatever reason, to fully perform. I generally get at least 1 erection a day -- my Uro said so long as I get one every other day I'm on track to heal, but I think he was being conservative -- it's just that sometimes that hardon is weaker and not optimal to having sex. I just want to know if I'm hurting myself by not taking a full, daily course of V in addition to the rest of my supplements.
Still doctor-shopping to get that Pentox prescription...grr...
I'm not pushing anything, but I got sick of dealing with Uro's on Pentox. I've been getting mine from mexmeds4you.com ... a Mexican phramacy. As best I can determine, the Trental they ship me is perfectly legit, at least it has a noticeable affect on me that seems very benificial. The pills come in blister packs (two to a box), are serial numbered to their box, lot number, etc., and I've read that these are signs that foreign drugs are probably legit and not counterfeit. I'm not happy about taking a prescription drug without a prescription, but honestly, I'm sick of trying to find a willing Uro. If this is an option for you, I think you'll find them reliable. Good luck.
Nemo
Hi all im new to the forum but have been reading for god knows how long. I am 21 and have had peyroines for maybe 8 months, now, but since my original plaque i have developed many more due to an extra sensitive penis.
I have done countless research as everyone else on this forum and trying to figure how to stop this disease. Anyway I originally started taking vitamin E in heavy doses after doing research and since I started on such a regimen I started to see plaques melt away. I also found PDI headed by dr Herazy and started using some of his supplements, ie ACL, vitamin E, quercetin and eating healthy which for the most part I always did so no real adjustments there. I have always been healthy, as well, im young, and in good shape. Always healed fine. Anyway after taking these for a few months my plaques were going away and my huge monster one on my ventral side was disentegrating slowly.
The problem lies in the side effects. I know everyone on these forums report of taking such supplements in heavy doses, but I started to make the connection that many of these natural supplements inhibit collagen formation, and inhibit fibroblasts, by doing further research. Thus my skin started to wrinkle more, i started to get scars on my face, and noticed more and more skin loss, as well as spots on other parts of my body. I emailed my uro that I worked for in Florida ( i live in NY) and he told me to relax and take trental, and ALC only. The enzymes fibrozym, and nattokinase, in addition to all these other supplements really worked wonders, for me I guess because I am young, because I instantly feel blood flow, and the symptoms go away big time, when I am on them. I am telling you I check my penis just like everyone else constantly and on day by day basis they seem to get smaller, and blood flow is better when I take all these treatments synergistically. I just freak because I see my face, and skin which I never had any problems with, getting scarred as well as normal healing mechanisms being inhibited with such heavy doses.
The peyroines scar is different from normal scars of the dermis you know. by inhibiting collagen and fibroblasts that are stuck on the supposed on state, I notice it has thrown off my bodies natural mechanism of normal collagen and what not everywhere else in my body.
I wanted to know if anyone else expierenced this, and if maybe I should get off everything and let it take its course. I tried experimenting with this for aday or two and instantly noticed my face and skin started to get better, but my penis got worse and the plaques hardened more. Suffering From Ed at times at 21 and not being able to maintain a hard on from what used to be clock work blows. CATCH 22 I feel like. severe distress. I know I can combat this well but I am so torn. My penis or my face. I try to explain my gf whos abroad right now and she has been so supportive. Really am torn. and would like to hear other peoples thoughts and expierences. I know I can fight this and heal but again I am seeing some bad side effects. I am actually entering the field of medicine and all of this has made me realize that maybe uro is my calling, and finding a peyroines cure is what I should do. My face and skin are very important too and I dont want that to fall apart as well while trying to treat my penis. HELP.
Anway I am scheduled to meet with Dr. Mulhall in 3 weeks At cornell. IF anyone can help and give some feedback it would be greatly appreciated.
Thank you
I wouldn't exactly recommend it, but it's more than possible to buy viagra online for much, much less than $15 a pill. The downside is that unless you happen to have your own scientific lab, you won't know if the chemical composition is the same as prescribed viagra. You will however know that it works due to the obvious :).
I also buy trental online. Due to negative experiences with uros, I have decided to formulate my own treatement by the use of these drugs and also supplements recommended here (ALC, Vit-E, Aloe etc). I'm still surrently experiencing some minor pain as a result of over enthusiastic traction a few months back. This has worried me no end, but I'm taking every supplement that can possibly be of help to me, and if my curve changes in a negative sense I will immediately start back up on the VED (I put that on the backburner due to the slight pain i'm still experiencing).
The only reason I'll return to a uro, is if a new drug emerges which looks extremely promising. Even then I'll likely have to kick and scream to get a prescription for it!
Quote from: ocelot556 on July 24, 2008, 02:29:03 PM
Does anyone know the exact mechanism of aid from Viagra? One of my Uro's mentioned that PDE-5 was a helpful compound to have in the bloodstream vis a vie my fibrosis, but my other (regular) Uro only made mention that it was beneficial for providing more blood to the affected area.
At $15 a pill I can't afford to take even 1/4 a day medicinally -- I generally take 1/4 or 1/2 of a V when I feel unready, for whatever reason, to fully perform. I generally get at least 1 erection a day -- my Uro said so long as I get one every other day I'm on track to heal, but I think he was being conservative -- it's just that sometimes that hardon is weaker and not optimal to having sex. I just want to know if I'm hurting myself by not taking a full, daily course of V in addition to the rest of my supplements.
Still doctor-shopping to get that Pentox prescription...grr...
i started on Neprinol (Advanced Fibrin Defense)... while surfing online, i rand into a site catering directly to the Peyronies Disease audience... anybody heard of it/tried it?
lada - NEPRINOL is a total waste of time and money - spent over $600 on it for nothing - dont get ripped off!!!!! - its just a scan - read the threads and get onto VED........what ever you do stay away from Neprinol and the Dr Herazy scam!!!
Quote from: Old Man on July 23, 2008, 06:50:50 PM
Steve:
I notice that you have been on the VED therapy for over 75 weeks now and you say still pointing North. Have you experienced any positive results at all from this long period on the VED regimen.
Also, would you let us know which model VED you are using, whether or not is a one cylinder or three cylinder model. Perhaps home made VED?
Old Man
Sorry about the late reply...somehow, I no longer get notifications of new posts, nor even replies to my posts? I've got Hawk looking at this (any news Hawk?), so I've got to log in to each forum that I'm interested in, and then manually search for new replies, and without notifications, I don't log in very often.
Quick answer -- no, I've seen absolutely 0 change in my Peyronies Disease :'(. I haven't updated my signature line in a while...I'm now at 157 weeks :(. I'm using the Soma Correct 3-Cyl model, and followed the 'regimen' closely for about a year. Then, I became more sporatic-about 3-4 times/week. Now, I'm getting back to the regimen for the past 4 months again. But still, comparing photos 3 years apart, I can't see any difference.
[Edit] - I went in and rechecked my spreadsheet...I've HAD Peyronies Disease for 157 weeks. I've actually been using the VED for 115 weeks now. BTW, after the 10 reps of the 'regimen', I'm following that with Old Man's 'milking' excercise for another couple of minutes.
Steve:
That is really interesting. I have been in contact with only one other guy who failed to get any results from VED therapy. He did get better erections, but the curve/bend did not recede at all.
He did regain the sensitivity during sex, but had to modify the positions he and his partner used. They took enough time to experiment with different positions to find the best one that worked. He only used the VED for therapy since he could get natural erections. His uro couldn't give him any explanation at to why the curve did not get better.
Sorry that you have had no results so far. You should stay on the protocol as closely as possible. I might suggest that you look back in the Child Boards section in the VED thread and look up the "milking action" exercise that was posted there. It has helped several guys who did not get results from the standard therapy exercises.
Old Man
: ) thank you iceman... this place is great!
I posted earlier, but has anyone seen any side effects of drugs and vitamins such as trental, vitamin E, nattokinase, fibrozym, etc? I have bene on these and they have caused scarring on my face, and inhibited healing in wounds over my body. My collagen content I feel like is greatly diminishing which is what these supplements help do, but at the same time it is affecting other parts of my body. Does anyone have any advice or feeedback? I posted before but No one seemed to respond, I guess becuase it never has happened? Keep me posted it would be greatly appreciated.
sflo, what do you mean by "scarring" on your face? Do you mean acne induced scars? I'm not sure what you're talking about on your face, can you be more specific?
Nemo
well yeah basicially loss of skin and scarring like acne but without any acne. i have a clear face. I also have noticed inhibited healing in other parts of my body ie cuts and what not. skin has been so outta funk, i just toned down to trental and ALc now, but still its apparent. I believe cuz i have been research and most blood thinners, and all meds for peyroines seem to be collagen inhibitors so will they be throwing off my bodies natural system for it. My uro said dont worri, just take trental and ALC, but when i start taking vitamin E and enzymes as well, I really see an even more pronounced diff in blood flow, and i feel the plaques getting smaller and melting away. at the same time my skin gets worse. I tried gettin off and i instantly notice my skin gets better. Just seeing if anyone else has something similar or maybe my reaction is one in million
Quote from: sflo on July 25, 2008, 11:57:49 PM
I posted earlier, but has anyone seen any side effects of drugs and vitamins such as trental, vitamin E, nattokinase, fibrozym, etc? I have bene on these and they have caused scarring on my face, and inhibited healing in wounds over my body. My collagen content I feel like is greatly diminishing which is what these supplements help do, but at the same time it is affecting other parts of my body. Does anyone have any advice or feeedback? I posted before but No one seemed to respond, I guess becuase it never has happened? Keep me posted it would be greatly appreciated.
sflo, First of all most of the supplements you name simply DO NOT diminish Collagen. I would challenge you to present one authoritative reference that indicates they do. So I would suggest that your premise is wrong here.
Trental (Pentoxifylline) attacks Peyronies by inhibiting TGF-beta-1 and TNF-alpha (cytokines) AND by modifying red corpuscles to enhance oxygen delivery. Both of these lower inflammation and resulting INAPPROPRIATE CROSS-LINKING AND EXCESSIVE ACCUMULATION OF COLLAGEN. They DO NOT change Collagen production at all.
Vitamin E is an antioxidant. It has nothing to do with Collagen production, but, as an antioxidant, it can protect tissue (and Collagen) from oxidation. In fact, Vitamin E creams are hot items on the beauty market due to Vitamin E's ability to make skin more supple and robust. Nattokinaise and Fibrozym are great supplements, but have no proven link to Collagen at all. The claims made by their sellers as to "inhibiting Collagen production" are totally unproven and very difficult to believe. Nattokinaise inhibits Fibrin, a substance involved in blood clotting and in the healing process. Fibrozym, on the other hand is a collection of enzymes with mostly speculative effects on the body. Fibrozym *could* be having an effect on your skin, although that would be unusual. For Trental, Vitamin E or Natto to be having any effect on your skin would be extremely unusual. So I would look at dropping just the Fibrozym here. I would also find it unusual for Fibrozym to be helping with your Peyronies. Fibrozym is a "patent" type supplement and the sellers of it make lots of money off of it. This is not the case with Pentox, Vitamin E or Natto, which are all generic substances and provide thin profit margins. Thus a lot of the "research" and "information" on Fibrozym is really just big bucks marketing to try to convince people to buy it to cure all kinds of things. My experience with enzyme treatments over four years has not been very rewarding.
Quote from: sflo on July 26, 2008, 10:47:00 AM
well yeah basicially loss of skin and scarring like acne but without any acne. i have a clear face. I also have noticed inhibited healing in other parts of my body ie cuts and what not. skin has been so outta funk, i just toned down to trental and ALc now, but still its apparent. I believe cuz i have been research and most blood thinners, and all meds for peyroines seem to be collagen inhibitors so will they be throwing off my bodies natural system for it. My uro said dont worri, just take trental and ALC, but when i start taking vitamin E and enzymes as well, I really see an even more pronounced diff in blood flow, and i feel the plaques getting smaller and melting away. at the same time my skin gets worse. I tried gettin off and i instantly notice my skin gets better. Just seeing if anyone else has something similar or maybe my reaction is one in million
Acetyl L Carnitine functions largely as an anti-oxidant. It really does not directly affect Collagen.
1) If I were you, I would stop the Fibrozym. Nattokinaise is probably not helping your Peyronies, but not harming you in any way either. The rest are likely beneficial for your Peyronies. (With the exception of the Trental which is DEFINATELY beneficial for your Peyronies.
2) If you continue to have a problem with your skin, you need to see a dermatologist NOT a uro. Thoroughly discuss all of your Collagen concerns with a good dermatologist. They are the ones medically trained regarding skin care. You may have some other problem that is simply being exposed by the supplements OR you may have some sort of allergic reaction to one or more of the components of the supplements or any one of a number of other scenarios. But a good Dermatologist is the best place to go for skin issues.
3) Consider adding Aloe Vera and L-Carnosine. The really top skin enhancing supplements are Vitamin E, Aloe Vera, and L-Carnosine. ALL THREE are likely to be helpful in dealing with Peyronies as well. The whole issue is not a matter of too much Collagen or too little. It is a matter of healthy Collagen vs sick Collagen. The "too much" "too little" jargon is marketing based speak, not science based speak.
4) Consider adding things like Horny Goat Weed and SAN VasoFlow. They can assist in the blood flow area and also in dealing with the plaques which, in your case, are more likely a result of inflammation, not "Collagen accumulation". True Collagen accumulation as a result of tight cross-linking is a very long (months/years) process and actually breaking that Collagen down takes even longer. - George
OK I have been new and been posting recently and though I should give a heads up for many younger people who read this. I am 21 got hit with peyroines at 20. I am graduating with a bachelor in biochemistry, and entering medical school so I do have a science background, and can understand much. I have worked with a uro on clinical research as well, so I am knowledgable. Anyway I have been posting with my battle with peyroines.
For us younger folk, I truly believe it is easier to combat the disease. I had plaques and a huge monster one, and started taking vitamin E with quercetin, ALC, and a multi. My smaller plaque left me within a little over a month, and my monster one that ran ventral to my shaft, started to melt like a bacon cheeseburger on the 4th of july. I contracted more plaques from normal sexual activities even with care, that I would usually partake in with my gf, because I believe once contracting peyroines and also from papers I read by Dr mulhall, the cells of the tunica are essentially more predisposed to further injury and the penis in general becomes more sensitive. I again started to hit the vitamins and what not hard. Again saw positive results. During this time of I would say 5 months, that I was on the suupplements after doing extensive research I realized, (as stated before) all these supplements inhibit normal healing of dermal wounds, because they inhibit fibroblast activity.
For those who dont know, but I am sure many do, fibroblasts represent cells that rush to an injury, they are the make up of cells in our skin and tissue, etc. Anway during an injury, these rush to the site, secrete collagen and restructure the wound, and ultimatley the body decides how much or less the scar will remain. In peyroines these cells are almost immortalized, and satay stuck in the "on" state by secreting collagen and not turning it off, hence peyroines. Men suffer injuries to the penis all the time, so obviously there is problem with the biochemistry of all this. Anway the reccomended typical vitamin E ,ALc, really helped but I noticed dermal scarring like acne scarring, and skin loss, on other parts of my body. I thought maybe I shaved myself and it didnt heal but even if then, I had never really scarred on my face or what not. Then I saw more and more and started to make the connection.
Again as stated earlier on the forums I tested this and realized this was the problem. This has put me under more distress because its either my face, and I am young, I want a nice face and skin you kno so I am worried. I go off all supplements except for a multi and the scars on my face start to contract, and the skin loss gets better. But guess what? Mr peyroine acts up causing pain, and shrinkage, and the plaques that were shrinking come back on full force.
And for young men who hate on thackers. I tried DMSO due its strong penetrating abilities, it even crosses the blood brain barrier which is kinda nuts, cuz not much can cross it, but i tried popping open a capsule of vitamin E then applying DMSO. Wow it was instant in effect. My penis engorged with blood, and plaques softened it was amazing. Again my face started hurting and has been since on these meds, which is a sign my body telling me that I was messsing my skin, cuz usually everytime this happened I noticed more irregularities and scarring.
So pick your poison folks. Young men have a chance to fight the disease because I believe we are much more responsive to the therapy. And our bodies are still young. It is a catch 22 though, because If left untreated it might be worse because of a more active immune system, and the bodys ability to react so adversely to trauma. I am debating to get off all supps except for a multi and try and let my face heal as much as possible, and try to attack it again like this, while purchasing a VED once I get the money.
After having all this and ironically getting a hydrocele, all while working with a uro, (ps i saw a nesbit procedure being done, while doing research for a uro) I truly believe I should enter uro as this is my calling, and find a damn cure for this. Its sad how men dont have such a cure for a horrible disease. It can and wil be fought and I am so determined to find it, while hopefully someone beats me to it! and they start now. I have been talking to old man about VED and looking to get one soon, and I just got pmed by jack who is young as well. If anyone has any questions I would be more than happy to answer, especially for the younger advocates. And if anyone has any advice to throw at me please feel free to pm me.
good luck to all and I wish the best for every man who is on or reads these forums.
sflo
Well, I made the journey to San Francisco to see Dr. Lue. He and his friendly assistant collected my information and then did a complete exam including ultra-sound. They concluded that my Peyronies is very mild with very little tissue thickening. Not bad after a four year saga. Oh, and they felt me to be a very good candidate for Pentoxifylline. I was planing to pass the prescription on to my insurance provider, but then decided I wanted to get started with it right away. This turned out to be probably not the best decision since I have a colonoscopy scheduled in the next few days and Pentox is on the "Does not fly list" for that. I am not supposed to take it within seven days and it is scheduled for Thursday. But I have only gotten one pill for each of three days and hopefully this doesn't turn out to be a show stopper. Other than that it has been uneventful with no perceptible side effects and some slight reduction in the inflammation already showing up. So I am anxious at this point to get the colonoscopy over and rev up the pentox. I will keep you all informed. - George
sflo:
What do you think the benefits of ALC are - Ive been on it for the past 4 months - I think it helps with the pain - your thoughts......??
thx
sflo,
The problem with DMSO, is that it doesn't care where it goes in the body. That means anything to you put on the skin gets taken right in. Your observations about DMSO and vitamin E, applied directly to the penis is interesting.
Tim
yeah either way i mean I kno the supplements definitley help me huge. Pentox, vit e, Alc the whole nine when taken together I get better erections plaques get smaller, and no pain. Def works for me. Again im off everything right now and my penis hurts like hell, but i am seeing if its actually all the drugs that might be throwing my body off whack, who knows. It def hurts my penis ill tell u that, but just seeing if maybe that was the case. Either way im gona get back on the supplements soon. The dmso with E i just figured to try something diff. I popped open a natural vit E GAMMA T by yasoo, rubbed on the oil, then dmso'd the bad boy. Make sure ev is clean on ur hands, cuz again many are againstdmso cuz of its penetrative abilities. Anyway It helped me which was quite interesting, blood flow was nice, i hung down like a shower penis, and my erections were bigger. Ill keep u posted.
tim 468 - great article - he doesnt however go into toomuch VED usage - how come he doesnt know too much about VED but on threads here we see allot of UROs recommending its usage...
very odd how there is no uniform rule or standard regarding these issues and methods - I just follow what old man says..
I have a follow-up appointment with my uro next week and wanted to get some advice from you guys. I have been taking potaba for 6 months which he prescribed me. There has been little change in my plaques, and just in the last few days I noticed a new little nodule on the opposite side of my penis from the original site. So I think no big surprise here that the potaba isn't working. For the past 6 moths i have been taking:
Potaba 24/day
Vitamin E 1/day
Acetyl L Carnitine 1/day
I almost feel like the ACL is doing more than the potaba since I've run out several times and not taken it for a few days and it is noticable in the plaques. So I plan to start taking the ACL twice a day. I have also read a lot of good here about pentox so I was wondering if any of you thought that would be a good thing for me to take. I posted my history here: https://www.peyroniesforum.net/index.php/topic,31.msg15227.html#msg15227
I asked the uro about pentox on my first visit 6 months ago and he said he hadn't heard about it. As far as the other supplements he said, "couldn't hurt". My question is do you think I should try to a) persuade my uro to prescribe me pentox or b) find another uro who will?
A follow-up to question a is if I do try to ask him for pentox (I might as well since my appt is next week), how do you think I could go about it and be successful? Print out some of the studies about it? Or am I wasting my time here?
Much thanks for any help.
Joe, Welcome to our group! Most people here won't be surprised that you are not getting much action out of the Potaba. The problem though is that Potaba is THE FDA approved and recommended treatment for Peyronies so it is always the "safe" choice for the urologists. Pentox works better (I noted improvement with only three days), has fewer side effects, is less of a pain (3 pills v 24, and is less expensive than Potaba. But my Uro politely refused to prescribe Pentox. He told me that he has a policy of never prescribing off label drugs. He is NOT opposed to their use, but flatly refuses to prescribe them. My suspicion is that this has to do with liability issues. As soon as I suggested that Dr Lue in SF would prescribe it for me, he right away produced a nice referral letter. I spent probably 20hrs on the bus to see Dr Lue and back and now I am taking Pentox and am very happy with it so far. I suspect this holds true for most Uros unfortunately. You just about have to travel to a research center to get a script for Pentox. And accomplishing that largely depends on where you live. If you live near a large city, airfare to SF and Dr Lue should be VERY reasonable. If, however, you live in a less urban area, getting to any major metro center can cost a fortune these days. For me, air transport to SF is running over $800 round trip and its only an hour away by air. Ironically, I can get a round trip air ticket to New York, 7hrs by air from here for less than half that price. Like Peyronies prescriptions, air travel prices don't make a whole lot of sense. In any case, I wish you all the best in finding someone who will help you with the Pentox. Its far and away the best stuff. But high Gamma Vitamin E and ALC are good stuff as well. - George
joe,
Perhaps it is unfortunate, but if your urologist said "it can't hurt" to try supplements, it indicates he is more open minded than most! I would use that to your advantage. You can reprint the articles about pentox and give them to him with a letter asking him to take the time to review them and to let you know what he thinks - that you have been reading on some patient boards and many men are now getting this therapy, and you are hearing some cautiously optimistic reports. If he is open minded, he will peruse the articles and agree to try it. If he is not, then he may refuse to look at them (dump him) or review them and be unconvinced (keep him and ask for a referral to a Peyronie's expert).
But he sounds like he might be very reasonable and willing to work with you. Good luck!
Tim
Tim, In my case, my physician WAS convinced as to the potential efficacy and advantages of Pentox. When I told him Lue was promoting Pentox, he had nothing but good things to say about Lue and let me know that IF Lue prescribed it for me, he would be all for that. BUT, he was unwilling to buck "the system" and work with Lue himself in order to deliver it to me. But I suspect this might actually vary some from state to state depending on the litigation/liability environment for medical professionals. In any case, as you point out, Joe's physician DOES sound very open minded and that is a good sign in either case. I have had physicians in the past who have literally done their best to BLOCK me from access to a treatment. That in my mind is the worst possible case. Certainly, in Joe's case, if his physician is not willing to prescribe Pentox for him, he WILL be willing to refer him to a Peyronie's specialist. The best thing he can do for himself now is to get familiar with the Pentox research AND know who the nearest Peyronies specialist is who is willing to prescribe Pentox. Then he can go back to his urologist with all the right information to make his presentation. - George
George999:
How do you know if the Pentox is working?? - or at least having an effect?
Cheers
I have found a Canadian Pharmacy that provides pentox without a prescription.I am presently in my 12th week of VED,taking Neprinol,Vitamin E.Vitamin C and applying Verapamil twice a day.Would anyone recommend this change and should I stop all the above?.Is there any interaction with the trentol/pentox??????? Thanx
Quote from: Iceman on August 03, 2008, 12:36:29 AM
George999:
How do you know if the Pentox is working?? - or at least having an effect?
Cheers
The inflammation decreases resulting in less pain, shrinking plaques. At least that is the effect I am seeing with it. - George
Quote from: Ticker on August 03, 2008, 09:32:57 AM
I have found a Canadian Pharmacy that provides pentox without a prescription.I am presently in my 12th week of VED,taking Neprinol,Vitamin E.Vitamin C and applying Verapamil twice a day.Would anyone recommend this change and should I stop all the above?.Is there any interaction with the trentol/pentox??????? Thanx
The VED works. ;D
Trental/Pentox works. ;D
Vitamin E works. :)
Verapamil might work. ???
Vitamin C can be good for you but probably won't help with your Peyronies. :-[
Neprinol seems to be helpful for respiratory and joint problems but doe nothing to help Peyronies and will cost you a fortune. :-\
I would stick with the stuff that works and dump the stuff that doesn't. Vitamin E and Pentox both have differing blood thinning effects. You will need to manage that. The blood thinning effect of Vitamin E (anti-coagulation) can be countered with Vitamin K. The blood thinning effect of Pentox (anti-platelet aggregation) can not be countered. Dr. Lue recommended that I start with 400mg of Pentox twice a day and then up that to three times a day at the end of one week. I think a real drawback to using these things without prescription is not having a doc (or local pharmacist) to advise you if you run into a problem. I would really recommend continuing to find someone who will prescribe it for you. - George
I have had peyronie's for over a year now and it has wrecked havoc on my relationship. I have seen multiple doctors and none of them would give me any help except recommend surgery.
I actually called and finally convinced the first doctor to start me on potaba since I read up on that.
Anyhow, I have started using bromelain, gotu kola, fish oil, vitamin E, potaba, and quit smoking. I also take vitamin B, C as well. Anyone else have other suggestions or know where you can find a doctor that will actually prescribe trental/pentox. I have had little to no luck for a year now.
Its frustrating scheduling appointments only to find out they recommend vitamin E and the curve is not more then 45 degrees but it goes to the right. Its the pain that bothers me.
Otherwise if anyone has any other herbal recommendations I wouldn't mind that either!
<<Ohio.
firepfchaos - get onto PENTOX as soon as you can!!!!!!!
Quote from: fireofchaos on August 03, 2008, 08:01:18 PM
I have had peyronie's for over a year now and it has wrecked havoc on my relationship. I have seen multiple doctors and none of them would give me any help except recommend surgery.
I actually called and finally convinced the first doctor to start me on potaba since I read up on that.
Anyhow, I have started using bromelain, gotu kola, fish oil, vitamin E, potaba, and quit smoking. I also take vitamin B, C as well. Anyone else have other suggestions or know where you can find a doctor that will actually prescribe trental/pentox. I have had little to no luck for a year now.
Its frustrating scheduling appointments only to find out they recommend vitamin E and the curve is not more then 45 degrees but it goes to the right. Its the pain that bothers me.
Otherwise if anyone has any other herbal recommendations I wouldn't mind that either!
<<Ohio.
The Potaba *should* help with the pain. Pentox *is* the better choice. If you are anywhere near a major city like Columbus, it might just be worth it to book an appointment with Dr. Lue in San Francisco and work out a flight. There may be docs closer to you in Ohio who are prescribing Pentox, perhaps someone else can give you pointers on that. Aside from that, you should try 1) Acetyl L Carnitine, and 2) Mangosteen. Acetyl L Carnitine is widely available and Mangosteen juice is available at places like Costco. Mangosteen extract capsules are also available. Both of these may well add to the anti-inflammatory effect of the Potaba. You should continue the Vitamin E, just make sure to use a high Gamma product. Fish oil is good as well although I have switched from fish oil to flax oil, I think it is superior. Perhaps the best step you have taken so far is to quit smoking. Congratulations on that! - George
George999.So help me with this.Once I start taking the Pentox,2 a day for a week then 3 a day.I have been taking a 500 Gamma vitamin E at nighttime and a 400 in the day.(total 900 daily)I think I will dump the Neprinol,Vit C,and the Verapamil.I will continue the VED because I really feel it is working.How will I know if I need to counter the Vitamin E with Vitamin K?Does anyone use this combination that can give me direction?Thank You,Ticker P.S.How long do you take Pentox?is there a time limit on that drug?
Quote from: Ticker on August 04, 2008, 08:22:43 AM
George999.So help me with this.Once I start taking the Pentox,2 a day for a week then 3 a day.I have been taking a 500 Gamma vitamin E at nighttime and a 400 in the day.(total 900 daily)I think I will dump the Neprinol,Vit C,and the Verapamil.I will continue the VED because I really feel it is working.How will I know if I need to counter the Vitamin E with Vitamin K?Does anyone use this combination that can give me direction?Thank You,Ticker P.S.How long do you take Pentox?is there a time limit on that drug?
The danger with Vitamin E is that it CAN interfere with coagulation. If you are taking more than 400IU per day of Alpha Tocopherol, I would certainly consider taking some Vitamin K. In any case if you have any difficulty with minor wounds bleeding excessively, that is a sign that you should be getting additional Vitamin K. As for the time frame on Pentox, my understanding is that it is pretty open ended. I haven't heard anything from Dr. Lue on that issue though. - George
If I were on Pentox and vitamin E, I wold limit my intake to 400 IU of vitamin E per day, using the broad spectrum type with all 8 tocotrienols and tocopherols.
I would also look for bruising or prolonged bleeding, and if I saw it, I would promptly stop the vitamin E and go to the doc and get a coagulation profile drawn (especially to be sure that the reason for bruisability is not something else). This can be used to infer if the E or Pentox is affecting coagulation, or if it is something else.
Locally, one would probably want to get the opinion of someone who knows coagulation well (like the head of the blood bank, or a good hematologist); most urologists might not be able to interpret the coagulation profile properly.
Tim
Tim, I think it is important to note that Pentox does not actually affect coagulation itself, but rather inhibits platelet aggregation similar to the prescription medication Plavix. Vitamin E, on the other hand, works similarly to the prescription anti-coalgulant Coumadin. In the end, of course, it all adds up to bleeding risk, but they are two different processes. If one is using the VED as Ticker is, it should rather quickly reveal any propensity to bleeding. But, as usual, you are giving really good advice here. Everything tends to be subjective until one sees a lab sheet which is really the only way to accurately assess what is actually going on. - George
I think this question should go in the QUESTIONS forum, but since we are talking about Pentox and bloodflow I'll add it here. I'm not even sure Pentox has anything to do with it, but since I'm taking it I want to know for sure.
Lately I have been experiencing a slight pain in the right side of my lower abdomen, and down the right side of my groin. The right side of my penis is where the plaque/curve is. I can feel the slight pain when I use the VED, sort of a pulling, and I feel it when I wake up in the wee hours of the morning with a full bladder that feels like it's about to burst. The release of my bladder is almost orgasmic when I make it to the restroom, and I can feel the pressure on the pain area in my abdomen subsiding.
I work out, but not that often. I do, however, perform core exercises that put a strain on my midsection, but I don't remember straining myself there. That's why I wonder if it has anything to do with the Pentox or the VED. I can even feel the slight pain when I'm sitting still, although it's nothing that requires me to take pain medicine.
Has anyone else experienced this?
I am interested in Pentox, especially if I can get it from Canada w/out a script, but I have one question:
Haven't there been some people report that it may make them worse off long term? Like that when you take it it's good, but once you stop it's worse? I don't want to have to rely on something like that. Then again, if it helps and doesn't get worse or only gets as bad as it otherwise would have been that's not too bad.
Boodoo,
Very interesting observation...
I have noted a strange pain in my right lower abdomen (my worst side of Peyronie's is the other side - I don't think there is a connection there). It peaks very strongly if I go to the toilet. I have thought it strange and I cannot fathom finding a doctor who might be able to explain that pain to me! Speculation now shall follow, and may constitute too much information for some folks...
Oddly, when it comes, it is similar to the pain of getting kicked in the balls - a wave of intense crampy pain in my right lower quadrant. It gradually subsides.
I have discovered that if I grasp the right side of my scrotum and push it downward, I can prevent the pain that is associated with going to the bathroom.
The only anatomic structure that could account for that is the spermatic cord. It runs out of the scrotum and up into the abdomen, though it does not go that far laterally. I have speculated that if the scrotum is sucked up into the VED, it may inflame or tug at the spermatic cord and cause pain. I am not sure of the connection to the act of defecation, though - perhaps the origin of the colon is somehow in contact with the sp. cord.
What is amazing, is how one can find a way to prevent this from happening by trial and error. God help me if someone walks in on me sitting on the toilet and finds me sitting there clutching my scrotum tugging it southwards!
Tim
Thanks, Tim.
I might have unknowingly pulled my scrotum into the VED. The pain has somewhat subsided, although I try to empty my bladder more often so that the pain isn't as intense as it was, which really wasn't all that painful to begin with. I hope the decreased pain is a sign that the condition, whatever it is, is on the decline.
I have an appointment with my Uro in 12 hours. If I get to see him, and not a couple of nurses, I will ask him about it. Thanks again for your insight. I didn't even know about the spermatic cord. ]
Bodoo
Quote from: George999 on August 03, 2008, 10:04:35 PM
Quote from: fireofchaos on August 03, 2008, 08:01:18 PM
I have had peyronie's for over a year now and it has wrecked havoc on my relationship. I have seen multiple doctors and none of them would give me any help except recommend surgery.
I actually called and finally convinced the first doctor to start me on potaba since I read up on that.
Anyhow, I have started using bromelain, gotu kola, fish oil, vitamin E, potaba, and quit smoking. I also take vitamin B, C as well. Anyone else have other suggestions or know where you can find a doctor that will actually prescribe trental/pentox. I have had little to no luck for a year now.
Its frustrating scheduling appointments only to find out they recommend vitamin E and the curve is not more then 45 degrees but it goes to the right. Its the pain that bothers me.
Otherwise if anyone has any other herbal recommendations I wouldn't mind that either!
<<Ohio.
The Potaba *should* help with the pain. Pentox *is* the better choice. If you are anywhere near a major city like Columbus, it might just be worth it to book an appointment with Dr. Lue in San Francisco and work out a flight.
While we're talking doctor's, Dr Kurt Meissner in San Antonio is also pretty up to date with peyronie's and it's treatment and has been involved with some of the verapamil trials, and stays pretty well informed.
*full disclaimer*
I'm a former patient of his, and can't speak highly enough about him. He had me on pentox before I'd even heard of this site, and that was on my first visit. After finding the site, and getting info regarding PAV, and presenting it to him, he agreed with the logic behind it, gave me a few months supply of Viagra (well, he gave me my choice of viagra, cialis, or levitra) and wrote me a script.
/threadjack
Jon,
Your urologist sounds like a winner.
Tim
Tim,
It turns out that I do experience that pain in my abdomen when I have a sit-down in the restroom. I noticed it today when I had to strain a little to make things come out allright.
Also, I went to my Uro today and had an ultrasound on my scrotum. My Uro was concerned about a lump in my testicles, which has been there for years. Other doctors said not to worry unless it becomes painful. It still has not become painful, but has increased in size over the years. It looks like a third, smaller testicle is in there.
Can you imagine what women think when they see that third "testicle" and my curve. LOL
To make a long story short, the ultrasound tech said that something inside my scrotal sac was calcified. I told her about my Peyronies Disease, because I was trying to get her to do an ultrasound on my penis, but she said that the doctor would have to order it. Anyway, she didn't know what the calcified object inside was, so she took plenty of pictures. She speculated that it might be related to my Peyronies Disease. I'm skeptical about that, because she didn't even know how to pronounce Peyronies until I told her that the beginning letters were "P-E", not "F-E".
What do you guys think about her theory? Can Peyronies Disease extend into the scrotum? She said the calcification was in something in the rear of the sac. Is there anything in there capable of calcifying?
Jon, Thank you so much for telling us about this. We *REALLY* do need a list of docs who are comfortable prescribing Pentox. There are *so many* guys out there desperately trying to get access to it. It is affordable, practical and it just works. It is a real shame that it is so difficult to get a prescription for it. I just keep getting amazed that it seems to be working so well for me in such a short time and I am still at just 1/3 the full dose. - George
Quote from: jon on August 07, 2008, 03:16:31 PMWhile we're talking doctor's, Dr Kurt Meissner in San Antonio is also pretty up to date with peyronie's and it's treatment and has been involved with some of the verapamil trials, and stays pretty well informed.
*full disclaimer*
I'm a former patient of his, and can't speak highly enough about him. He had me on pentox before I'd even heard of this site, and that was on my first visit. After finding the site, and getting info regarding PAV, and presenting it to him, he agreed with the logic behind it, gave me a few months supply of Viagra (well, he gave me my choice of viagra, cialis, or levitra) and wrote me a script.
Hi guys,I have ordered Pentox w/o a prescription from www.easymd.com but I have not received it yet.It is in the generic form.I will take my chances taking this w/o a prescription.What is the doses that you are taking?You say your only taking 1/3 right now.I plan on taking the Pentox and lowering Vitamin E to 400IU daily and continuing the VED 26 week protocol of which I am in the 13th week.Any recommendation from anyone?Thank You,ticker
I may have asked this question in the past but I don't remember.
As I get older lots of things don't work as well as they use to.
The question is if Pentox has a positive effect if we have had
Peyronies for a number of years with out change. Probably
has calcified? Musicman
Ok. I have added Carnitine and Flaxseed oil to my list of regimen. So now im up to Potaba, Vitamin E, C, B, bromelain, fish oil, still no smoking and gotu kola. I still cannot find anyone who prescribes pentox in my area. I feel like I am searching for the Holy Grail. Anyhow, I did an interaction check on all of the above and nothing stands out. Hopefully, I am not overdoing it.
Sad part is I can remember the incident that started all of this. Be nice if I could wake up one day and that would be a dream of a day that didn't exist.
I'm not sure how useful this is but I thought I post it here
Nutr Cancer. 2005;52(2):121-9.
Nutritional intervention with omega-3 Fatty acids in a case of malignant fibrous histiocytoma of the lungs.
Pardini RS, Wilson D, Schiff S, Bajo SA, Pierce R.
Department of Biochemistry, College of Agriculture, Biotechnology and Natural Resources, University of Navada, Reno, NV 89557, USA. ronp@cabnr.unr.edu
We present a case of a 78-yr-old man with malignant fibrous histiocytoma with multiple lesions in both lungs. Following diagnosis, he declined conventional chemotherapy and elected nutritional intervention by increasing intake of omega-3 fatty acids and lowering intake of omega-6 fatty acids. We estimated that he consumed 15 g of the long-chain omega-3 fatty acids eicosapentaenoic (EPA) and docosahexaenoic acid (DHA) per day, and the ratio of linoleic acid/long-chain omega-3 fatty acids in his diet was 0.81. Serial computed tomography scans and pulmonary x-rays revealed remarkably a slow and steady decrease in the size and number of bilateral nodules. He has no apparent side effects from consuming large quantities of fish and algae oils rich in DHA and EPA and he remains asymptomatic.
Well, isn't that fascinating? Thanks Hitman. Omega 3's are anti-inflammatory and Omega 6's are inflammatory. That is a known thing. High levels of Omega 3's are found in Flax Oil, Fish Oil, Canola Oil, etc. They certainly won't hurt and may indeed help, just watch out for possible dangerous cholesterol numbers if you tend to have that problem. - George
MSM:
Good for Peyronie's or bad for Peyronie's?
What do you think?
I have a bottle of pills with Glucosamine, Chondroitin , and MSM all together. I took it before I had peyronie's and definitely noticed that it helped my shoulder feel smoother. However, twice in the past year I decided to start taking it and after a few weeks I noticed that the peyronie's flared up - so I quit because that was the only thing I could think of that was different. These could just be coincidences though, it's hard to tell. Especially since the internet claims that MSM helps reduce scar tissue, so I'd think it would help. I am tempted to try taking it again and see if it helps.
I too took Glucosamine Chronditin and MSM probably for less than a year before i started to develop Peyronie's. I definitely will not ever touch the GC again no matter what, and sometimes my knees pop, but oh well, i'll have to get them strong naturally.
i just googled msm scar tissue, and the first hit, while it does say that msm removes scar tissue it also says "It's used in the formation of collagen -- the "lattice" framework the cells fit in. Because of that, it's required in large quantities. It's a "macro mineral", not a trace mineral. (Vitamin C is a "macro vitamin", for the same reason.)"
I'd say that if someone's at risk for Pey (i guess you'd only know if your family had it, otherwise you're not likely to be educated on the risk factors), they should stay away from it all. But it looks like the verdict may still be out on MSM
Guys, I have said this before and I will say it again. Most of our body tissues are loaded with Collagen. The problem in fibrosis and Peyronies has nothing to do with "too much" or "too little" Collagen. It has to do with the body MISUSING Collagen. Thus all the worries about supplements and drugs that affect Collagen are misplaced. There ARE drugs and supplements that, for example, affect things like oxygen supply to Collagen rich tissues and other things like levels or systemic inflammation that affect the amount of Cytokines floating around in our tissues and THOSE are the substances that we should be aware of. But just because a substance stimulates are inhibits Collagen accumulation does not make it necessarily good or bad. We have to look further at WHAT KIND of accumulation it stimulates or inhibits. Going further than supplements and drugs, our food is FULL of substances that affect Collagen metabolism. That is why we should be at least as worried about what we are eating as we are about what kind of drugs and supplements we are taking. - George
Pycnogenol- Has anyone experienced any benefit from this herb? Supposedly it works with Arginnine to increase Nitric Oxide production. May help with ED if not with Peyronies. Expensive stuff, but I see some good sales online. What do you think? Snakeoil?
I've started taking Pycnogenol with my arginine (and ALC/PLC) on the theory that it can't hurt. I haven't noticed anything erection wise in excess of what the agr/ALC/PLC were already doing (or more likely the Pentox) but it'd probably too soon for me to tell. There are a few studies online that say arginine and pycnogenol make a good treatment for ED.
Nemo
I agree George. I think it's important to eat healthy, organic and vegetables if possible, although I'm really just speculating.
I feel that coffee may be one of the worst things for this too.
But George, don't you agree that Glucosamine is not good for this condition? I'm not sure about MSM. I think I stopped using MSM and Glucosamine at the same time, and I certainly didn't see any immediate difference.
Hello forum, I have just realized my case of peyronies, I have had it for only 20 days or so, I was wondering from everyones knowledge what would be the most powerful regimine of drugs and supplements to potentially cure or at least lesson the severity of this in my early stage?
Also I noticed some people mentioned a candian pharmacy where we can get pentox without a script, can anyone get that link for me.
Any information would be greatly appreciated.
Thanks
Beg.
Jack, I really don't know about Glucosamine. If there is some sort of pattern of people taking Glucosamine and then getting Peyronies, of course, that is a problem. So while I understand your reluctance to take it again after your experience, it doesn't necessarily prove a link. I just recently developed severe leg pain and eventually suspected it might be linked to a supplement I was taking. I eventually traced it to ALC/Vitamin B6 combination and even proved it out to myself by stopping and starting the supp and noting the effects. And of course I posted a warning here about it. Only to discover via an thorough exam by my primary physician that the root of the problem is really tied to a minor back injury that is inflaming some nerves in my leg. As I reflected on his assessment, I just happened to remember that just a few weeks prior to the problem I had undertaken a concrete job complete with bending commercial grade rebar. (That would put a little extra stress on my lower back!) I am just telling this to demonstrate how easy it is to link cause and effect without really knowing what in fact is going on behind the scenes. So I think if there are patterns that surface with multiple people having the same problem, or if there are studies demonstrating a link in a controlled environment that is one thing, but we do have to be careful not to make conclusions to quickly. And, oh, by the way, I am back on both ALC and B6 and not having any resultant leg pain. - George
PS - Actually there is a lot of chatter on the net with multiple people claiming to observe Peyronies Disease/DC issues with Glucosamine. That WOULD be a red flag to me although I would question the idea of a Collagen connection. There very well could be some other effect that Glucosamine is having that is the cause of the problem if it exists. Glucosamine also has a reputation for fighting inflammation. That also should mean it should be good for Peyronies. But various substances have MULTIPLE SIMULTANEOUS EFFECTS. Glucosamine could also have a damaging effect specifically on connective tissue that it does not have on other tissues. But with all the banter out there noting perceived problems with it, I would indeed use caution. AND if ANYTHING SEEMS to be causing you a problem, quit it until you figure it out.
Would 1000IU of vitamin E per day be enough or is a stronger dose required? I think i've read people here taking 3000IU but you would probably need a prescription to get it that strong?
Am i also right in thinking that any oral or topical medications would be of no use to someone who has had Peyronies Disease for say anywhere between 5 and 7 years? I'm pretty sure my Peyronies Disease has stabilized but recently ive been getting very slight dull aches in my penis after masturbation.
Quote from: Hitman on August 10, 2008, 02:28:27 AM
elected nutritional intervention by increasing intake of omega-3 fatty acids and lowering intake of omega-6 fatty acids.
I wish I had read that more closely. I just bought some Vitality Omega Man, which is very expensive at the store. It has some stuff on the bottle with claims about helping sexual health, but we have to look at this through a different prism I suppose (it has much omega-6 and 9 as well i believe).
Guess I'll save the stuff and maybe use it in the future. Anyways, I like the Omega stuff sold at Central Market. It goes well into shakes, although they make it seem that it must be refrigerated even before opening b/c they refrigerate it at the store and they jack up the price I think because now I see that this stuff is sold on the internet for I think more than a small amount less money. Anybody know if this kind of stuff loses its potency if not refrigerated--even before opening the bottle?
Hey guys,
I am hoping for some advice here. I'm 22 have had stabalized peyronies for about five years. I have no curvature, however have loss of size and firmness and infrequent nocturnal erections. I don't have a problem getting an erection when i try, but sometimes maintaining it is a problem and firmness varies. If i need to 50 mg of viagra is sufficient. I have not seen a doctor for this. My goal right now is to keep bloodflow at a maximum. I was thinking pentox, L-Arg, and VED therapy. Any advice on anything or pentox doses would be appreciated. L-arg has recently helped with nocturnal erections, but I have just started with that. How would i know if i have some sort of venous leak too?
Bob22
Welcome, you are in the right place. 22 is a very young age to start Peyronies. Have you been to a good Urologist?
To help the shrinkage go to the VED section and talk to Old Man. There is a 26 week program that works.
As for Venous Leakage you need a Urologist to to a Color Doppler to know for sure.
Good Luck
Wayne999
When I started Vitamin E in 1995 was on 400 IU three times a day. Go to a good source usually the Big Box stores carry inferior quality. Go somewhere like GNC or other health food source.
Hope this helps.
Jackp
Bob22,
Just curious,
1. how did you diagnose the Peyronie's, or what was the basis for the diagnosis?
2. What do you think it is stablized?
a couple of clarifications. I got peyronies not naturally but from a sex incident. I initially had visibile lumps and inflammation, but I dont get these lumps that you can touch anymore. I do not have curvature, but my angle is different than it was before the incident if that makes sense and do have partial bottlenecking. My condition has not continually worsened over the years so in that sense I say it has stabalized but some days/weeks are better than others. My main problem is firmness, maintaining an erection sometimes, and infrequent nocturnal erections. Overall, I lack elasticity and need to restore a healthy blood supply. 22 is young for peyronies, but it did not come on naturally.
I have not been to a uro, but my self diagnosis of peyronies comes from 1) trauma to the penis 2) lack of elasticity and rigidity 3) infrequent nocturnal erections 4) bottlenecking
My plan is 100 mg pentox, 3-5 g of L arg, ved therapy. Comments?
Quote from: wayne999 on August 17, 2008, 11:35:02 PM
Would 1000IU of vitamin E per day be enough or is a stronger dose required? I think i've read people here taking 3000IU but you would probably need a prescription to get it that strong?
Am i also right in thinking that any oral or topical medications would be of no use to someone who has had Peyronies Disease for say anywhere between 5 and 7 years? I'm pretty sure my Peyronies Disease has stabilized but recently ive been getting very slight dull aches in my penis after masturbation.
Wayne, I have taken close to 3000IU of broad spectrum E before as an experiment. I did this for close to three months. It can cause you to bleed excessively so you need to take Vitamin K and in some individuals it may not be safe even with Vitamin K. It can also cause damage to your arteries so you need to be taking Vitamin C as well. In my case, it worked spectacularly for a few days and then there was a tolerance effect and it was no more beneficial than 800-1000IU. So I DONT RECOMMEND MORE THAN 1000IU of Vitamin E. Its not going to help you to take more and it could harm you. As for the 5 to 7 year thing, I don't think personally that Peyronies ever really stabilizes and I don't think it is ever a good course of action to leave it untreated. - George
Quote from: jackp on August 18, 2008, 06:48:25 AM
Bob22
Welcome, you are in the right place. 22 is a very young age to start Peyronies. Have you been to a good Urologist?
To help the shrinkage go to the VED section and talk to Old Man. There is a 26 week program that works.
As for Venous Leakage you need a Urologist to to a Color Doppler to know for sure.
Good Luck
Wayne999
When I started Vitamin E in 1995 was on 400 IU three times a day. Go to a good source usually the Big Box stores carry inferior quality. Go somewhere like GNC or other health food source.
Hope this helps.
Jackp
jackp:
Do you have to find some real specific type of vitamin E? Moreover, will this one be ok:
http://www.blackmores.com.au/products/Detail.aspx?ProductId=1911
Although from quickly reading:
http://peyronies-disease-help.com/treatmentvitamine.html
it seems to suggest that the alpha type ones aren't what you should get?? i'm also bearing in mind that none of this stuff has any real proper scientific proof :(
So is it ok to go for that Blackmores product or do you need something more specific ?
Also, you probably shouldn't take vit E if taking pentox because the latter is a blood thinner? So should target #1 be to try get a prescription for Pentox ? and Pentox would only be taken for maybe a few months? Because the following site apparently documented calcification removal after using Pentox for 2 years:
http://www.nature.com/ncpuro/journal/v3/n2/fig_tab/ncpuro0409_F3.html
Also, does Pentox just help with pain or is it also supposed to help with curvature etc? I understand its a blood thinner. Am I also right in thinking that it is unikely to be prescribed if the "chronic" phase has been entered into? Or could there still be some hope for longer term sufferers of Peyronies Disease with Pentox?
George999: Yes I don't want to go "overboard" with anything either. I want to get as best informed as I can over the next week before seeing the uro.
Wayne, What you should be looking for in a Vitamin E is something that contains a lot of Gamma Tocopherol. The only place that I can see that carries such a product in Australia is:
VIBRABODY CITY
ENDOTA MELBOURNE
69 FLINDERS LANE
MELBOURNE 3000
PH (03) 8616 0453
They are basically a health and exercise products store and they seem to sell something called "Perfect E" described on their web page as follows:
Perfect E
Size: 60 softgels
Recommended Use : As a dietary supplement, take one softgel per day or as directed by your health care practitioner. WARNING: Consult your health care practitioner before use if you are taking blood thinning medication or have a history of rheumatic heart disease.
Benefits:
* Antioxidant
* Mixed tocopherols (d-alpha, d-gamma, d-delta, d-beta)
* Anti-inflammatory
Product Ingredients: each tablet contains :
* Vitamin E (as d-alpha tocopherol) 400 IU
* d-gamma tocopherol 440 mg
* d-delta tocopherol 147 mg
* d-beta tocopherol 11mg
Other Ingredients: Softgel (gelatin, glycerin, purified water), sesame seed oil.
There is much scientific evidence that Gamma Tocopherol is more beneficial than Alpha Tocopherol, but no real scientific evidence that either is specifically beneficial for Peyronies.
It is possible to safely take Vitamin E with Pentox, I and many others are doing so. BUT, you need to be extra careful not to take to much Vitamin E with Pentox since both do present bleeding issues, albeit by different pathways. Vitamin E inhibits coagulation whereas Pentox inhibits platelet aggregation.
In any case, Peyronies treatment with Pentox is a long term project. There are currently NO short term fixes for Peyronies period. Any product advertised as a cure or short term treatment for Peyronies is a guaranteed scam. I would certainly not think that taking Pentox for five years or more would be unusual when using it for Peyronies. - George
Bob22
I don't know the exact content of the Vitamin E I was taking it has been over a year now. I started taking it in 1995 and followed my uro's advice and went to GNC and avoided the big box stores. He seemed to think the big box stores did not carry the quality of product GNC and other health food stores carried.
All I can tell you is I started Vitamin E 400IU three times a day and Potaba in 1995 and within 12-18 month my curve corrected. When the curve corrected I stopped the Potaba but continued the E on Dr.'s advice.
Good Luck my fiend.
Jackp
PS
George999 has done more research on this. He seems to be on to something.
Bob,,,,Jackp,,I also used the Vita-E from GNC,,,it's the best quality..Make sure its a natural,,made from soy...Most others are made from a petrolium product. I used the natural vita-E along with the Topical Verapamil and achieved very good results,, ONe thing i will say about the vita-e tho,,,i was on it for too long, [ a few years], and i started getting dizzy and light headed a lot,,,,when i found out that it was also a blood thinner...so i stopped taking it and the dizzy symptoms went away,,I was probably on it for too long and maybe should have taken breaks away from it..
But this i do know ,,it did help me recover from a bad curve and now i am almost straight, with only a slight bend upwards.. This only my opinion and my experience...I hope the best for all of you. Always feel free to write me and i will try to answer any questions i can....
AS with anything be careful about how much you take,,you can even take too much vita-e...I was on 800 in for a few years and then dropped it down to 400 iu and then eventually had to stop that..
Kimo
To both Kimo and jackp:
You both reported positive results from vit E. I was wondering, how long had you had your Peyronies Disease/curvature when you started taking vit E? And what sort of improvement in terms of degrees did you see?
wayne999
Stretching a small thing a long way (Pun Intended) Mind that is!
As I remember it; after first discovering the curve while on vacation a few weeks later (maybe 6 or so) I had a prostate infection and went to the uro for that.
After the DRE he was about leave when I asked about the curve. He examined me and said I had peyronies. That was 1995. I was on Vitamin E from then until about a year ago.
As for improvement curve straightened in 12-18 months. But that left me 1.25 inches shorter. uro said nothing could be done to regain length. Fortunately girth is about the same as before peyronies.
I am now using Old Mans VED routine and have gained back between 1/4 and 1/2 inches over the last 10 months or so. Wish I had known then and maybe the penile shortening could have been helped then. The scar tissue on top of my penis prevents me from gaining more.
Good Luck on your journey.
Jackp
George999,I just received my prescription of Pentox yesterday and i will take 400mg 3 times a day.I was taking 900 iu of Vitamin E daily.500 at night and 400 in the morning.also I am using verapamil cream 2 times a day and I am into my 14th week of VED.Do you have any recommendations for me?Should I lower my Vitamin E intake to 400 daily? Thank You,Ticker
Ticker,
Just wondering if you have noticed any imporvements, how long have you had Peyronies Disease and what degrees is your curve? I am new at this as it looks like maybe you are just trying to see how its affecting others.
Thanks
Beg.
Quote from: Ticker on August 19, 2008, 08:18:32 AM
George999,I just received my prescription of Pentox yesterday and i will take 400mg 3 times a day.I was taking 900 iu of Vitamin E daily.500 at night and 400 in the morning.also I am using verapamil cream 2 times a day and I am into my 14th week of VED.Do you have any recommendations for me?Should I lower my Vitamin E intake to 400 daily? Thank You,Ticker
I would have to defer to your doctor on that one. Everybody responds to Vitamin E differently AND different formulations of Vitamin E can possibly produce different effects. At this point I am taking a lot of E with Pentox, but only Gamma Tocopherol, not Alpha Tocopherol. I have never actually taken Alpha Tocopherol with Pentox so I have no personal experience to draw on. I DO know that there can be bleeding issues. I also know that taking Vitamin K concurrently can help to alleviate those issues along with perhaps other potential side effects. From what I have heard, taking 400IU along with Pentox is probably safe *for most people* and up to 800IU *may* be OK. I would be a little more nervous beyond that. But, again, I think your physician can best advise you on that and he can also do some objective testing that would tell him exactly how your body is responding to the Vitamin E in this regard. I highly recommend doctors in dealing with these kinds of questions, they are really a great resource and often an underutilized one. - George
I just got back from my URO. He wants me off all oral supplements including vit E for a couple weeks to see how things go. He says they don't help and may even hurt. I take L-arginnine, L-carnithine, E, horny goat weed, fish oil, low dose aspirin. He said to think about trying topical Verapamil and get back to him in a couple weeks. hmmmm. ????
Jeez ... a doctor pulling you off supps in favor of topical verapamil ... I'd laugh if I wasn't starting to cry ... that's pathetic. Sounds like he and my Uro went to the same school!
Nemo
San Vasoflow is a time released L Arginine that I understand is considered to be top of the line. You can get it at Bodybuilding.com. It's in these nasty purple capsules that are coated in some kind of foul tasting oil ... but it's supposed to be good stuff, quality wise. I've been using it for about 6 months.
Nemo
george999 -
just came back from my health supplement shop and was going to buy a supplement called NOX 3X - its a nitric oxide booster - it contains Arginine-AlphaKetoGlutarate- heres the link: http://www.bodyscience.com.au/page/supplements/flypage/product_id/181
Its from a company called BSC .....do you know about this and can you recoomend this.
thx
Wayne999
My time frame was almost the same as Jackp,,,it was about 10 to 12 months when i seen good results from taking vita-E and using the topical verapamil..
kimo
Quote from: Kimo on August 20, 2008, 12:01:20 AM
Wayne999
My time frame was almost the same as Jackp,,,it was about 10 to 12 months when i seen good results from taking vita-E and using the topical verapamil..
kimo
Kimo:
Do you mean you immediately started taking vit-E and topical verapamil after you noticed the Peyronies Disease and it took 10 to 12 months to see good results? Or how long after you first noticed or got diagnosed with Peyronies Disease did you start taking the vita-E ?
George999:
It seems that Perfect E supplement isn't available to be ordered online for delivery to other parts of the country. Looks like I will just go with an alpha tocopherol. The wiki page on vit E says that the alpha type is well tested and the other types are not well understood ? http://en.wikipedia.org/wiki/Vitamin_E
Wayne, I think the concern is that recent research is indicating that only Gamma Tocopherol extinguishes nitrogen free radicals. Alpha Tocopherol does the same with oxygen free radicals and when one takes only Alpha Tocopherol, the body becomes depleted of Gamma Tocopherol, thus potentially exposing one to cellular damage from nitrogen free radicals. That is why I recently switched to the Gamma form as opposed to the mixed form. However, in looking into this further as a result of your post, I discovered that the Gamma form also carries risks. Too much of the Gamma form can also cause cell damage by preventing proper protein folding. This is an issue that can actually result in things like Parkinson's and Diabetes. (Study looks at how two forms of vitamin E affect the health of animal cells (http://www.news-medical.net/?id=16415)). This may explain why people with a diet high in corn products have more risks of things like Parkinson's. (Gamma Tocopherol is extracted mainly from corn and soy oils.) Now that I know this, I will probably be shifting back to the full spectrum type that I was taking before. It seemed to be at least as helpful for the Peyronies issue as the Gamma form and definitely better than the Alpha form in isolation. In any case, ongoing research is just now unraveling the mysteries of the effects of vitamin E on the human body. - George
Wayne999,,,,I was about 6 months into a bad case of peyronies when my doctor prescribed that i take vita-E and use the Topical Verapamil and then it was 3 months when things started to change for the better and at 5 months i was almost straight,,i figure that i regained about 85% back to straight,,good enough for sex with the wife...Then a couple of years later i went back on the topical V for a whole 12 months to see if it would get me all the way straight....Well, it helped in that it disolved all of my plaque that was left and i straightened a little more,,,,but i am still bent a little up about one inch from the tip of my penis and i have a little hour glass effect from where the plaque was,,which is only scar tissue now...
Hope this helps,,,,,kimo
I am now on Trental. I went to see Dr. Culley Carson at UNC Hospital. He told me that he felt no scarring or plaque. However, there is a very large and grooved, ridged and thick cord-looking line that goes from the base of my penis to near the tip. This unfortunately is only visible when erect. I am coming back to do a test (I forgot the name) where they will prick my penis at some point and cause me to have an erection in his office so that he can look at it. It has been 2 1/2 months now since I began to have my problem and the pain has only continued to intensify. I was told to take motrin for pain and to begin Trental. He said that though he didn't see any plaque now he was goin to begin as if I did have Peyronies and said that it sounded likely from my description of my hourglass-looking problems.
Now the pain is unbearable. I have now taken 3 Trental pills. One yesterday and two today. I work part time at Best Buy while I am in school. If I am completely stationary there is no pain. Unfortunately, whenever I move in ANY WAY AT ALL, there is excruciating pain in my penis wherever it is brushing against my clothes. This pain is not just relegated to wherever the head of my penis is touching any article of clothing.... It effects any part of it at all!!! I left early today and stuck a piece of styrofoam from a tv box in my mouth and bit down as hard as I could just to make it to my car. It hurts THAT BAD. I went to the bathroom at one point and looked just to see if anything was going on. As has been the norm for me whenever I start to feel pain and have a chance to look at it, I had a clear hourglass looking indentation.
The pain that had continued to worsen slightly ever since the onset of my problem has now seemed to really be ramped up. My penis feels like it is on fire. If I sit still though I feel perfect. As soon as I move....bam. Awful pain.
How do I deal with this? Is this the Trental affecting me? I don't understand what is happening and I have nowhere to turn. The Motrin is done nothing and I just can't take much more of this. My college starts back on Monday and I have so much stuff to get ready and my classes are going to be very hard. This is destroying my life. I will try to call Dr. Carson's office at UNC Hospital tomorrow to see if this is normal for this drug? I hadn't recalled anybody saying this before on the forum here.
Also, is it worse that my scars are only visible when I have an erection? My scar is dead center on my penis, not on the side in any way. I am so scared. Everything just keeps falling apart for me.
Alcohen:
Take it easy - I too was in heaps of pain - try to but L Arginine and Acetyle L Carnitine TODAY!!!!!!!!!! - this can help with the pain..
old man - how do I get my hands of topical verapamil??
Can you get it over the counter??
alcohen, Peyronies pain can be very intense. What you are experiencing is VERY unlikely to be a result of the Trental. The Trental should actually be reducing the pain, but it will take a few weeks for it to build up in your blood stream and become effective. The first three pills are not really going to have any noticible effect. I would definitely keep taking the Trental but DO let the doc know what is going on. Iceman is also giving you good advice here. L Arg and ALC are both helpful and I would add full spectrum vitamin E as well. But this burning pain you are experiencing IS very typical of Peyronies initial onset. You are catching it early and that is good, but do keep pouring on the Trental. - George
GEORGE:
what do you think of this product - in your opinion would it help??
http://www.bodyscience.com.au/page/supplements/flypage/product_id/181
thx
Iceman, I don't know. I am personally Arginine resistant and the only Arginine product that has worked for me is VasoFlow. Many guys with Peyronies are NOT Arginine resistant. So you would have to get an answer from one of them, since nothing has really worked for me but VasoFlow. Wish I could be more help, but I just have no real personal experience to draw on and Arginine is not one of my strong points in terms of knowledge. - George
Does anyone know of these supplements combined and their effectiveness;
Arginine-Alphaketoglutarate (A-AKG) Arginine-Ketoisocaproate (A-KIC) L-Arginine Monohydrate
Iceman:
I have no idea where your can get topical verapamil. There are several on the forum that have used it. Maybe they can tell you where it is available. At one time, a company in Texas made it, but I am sure if they still do it or not. I think the name was PDL Labs or something like that.
Sorry, I was not able to help.
Old Man
Quote from: Iceman on August 21, 2008, 10:53:42 PM
Does anyone know of these supplements combined and their effectiveness;
Arginine-Alphaketoglutarate (A-AKG) Arginine-Ketoisocaproate (A-KIC) L-Arginine Monohydrate
What do you think about
http://www.thesupplementden.com.au/shop/musashi-arginine-75g.html
I see most people saying something like they take 1000mg of L-Argentice....yet that above site says you can take a few grams?
Hello, just wanted to add this. My Urologist specializes in sexual dysfuntions and diseases and he told me that Verapamil ointment does not work because the skin of the penis has very poor absorbtion qualities. Thanks.
does anyone know a link to get pentox without a prescription, if so can you please IM me or post it.
thanks
B
Iceman,
I am not familiar with those supplements - could you post more about why you asked?
Wayne,
I used close to 3 grams per day, and I think that way back about 2 years ago, we had some discussion about dose-response and the rationale for higher doses. I think the consensus was to try higher doses gradually, and to work up to them as tolerated, in order to give it as good a shot as possible. I ended up buying empty capsules and capping my own capsules with bulk powder to save money. It was sort of a good meditative process - to sit and fill capsule for later consumption (I got a capsule filling rack that allowed me to do about 100 at a time). However, it had no discernible effect on my Peyronies.
beginer,
Your post raises two different issues. First, I believe that there is value in getting a physician to treat you who is willing to try prescribing Pentox for you, and is willing to help monitor you for ill-effects. Second is cost. If you are looking to save money, look for bargains on medications, not for bargains in brain power. You would do well to meet a doctor willing to see you periodically (ie every 4-6 months) and willing to take the occasional phone call for advice. Even if you pay out of pocket, this is worth doing.
Paying for surgery is not so simple. You need health insurance for that. Depending on your country, you may not be able to get health insurance coverage for a pre-existing condition. That way, the insurance companies can deny coverage for a Peyronies surgery as a pre-existing condition - if they know about it. This is one reason to "fly under the radar" but for no other reason should you avoid going to a doctor.
To get medication cheaply, you can probably go to an international supplier, who will ignore the need for a prescription and sell you Pentox (Trental) without one. If you go to a doctor, then you have no problem at all.
Tim
thanks a lot for the info!
TIM 468 -
Here is the link:
http://www.bodyscience.com.au/page/supplements/flypage/product_id/181
it seems to have a high concentration of L arginine - please have a look at this and let me know if its worth it to buy?
Cheers
I tend to not buy blends, but to go for a more pure item from a reputable vendor. I don't know this one to say anything one way or the other regarding reliability. They might well be fine. I tended to see what folks on the body building sites said about quality before I chose a source of L-arginine (I chose San-Vasoflow).
Tim
tim468 - are there various forms of l arginine - i thought they were all the same just different packaging??
Not sure I remember. There are definitely different qualities in production, though.
Tim
TIM468 - Hi there - so in your opinion san vasaflow is the best quality - i am using musashi
http://www.neprinol.co.uk/neprinol_Peyronies.htm
I found this link...what is this all about? I had not heard anybody mention this. The article is not dated so I am not sure how relevant the information is but it seemed interesting.
"By Dr. Theodore R. Herazy
Peyronie's Disease Institute
www.peyroniesmd.com
QuoteIt is important to understand that an enzyme is a protein molecule that either starts or speeds up a chemical process without being used up or consumed in the process that it affects. Enzymes start or continue many thousands of complex chemical reactions that occur continuously throughout the body. They have been called "the fountain of life" because without them life could not exist. Over 3,000 protein-based enzymes start or speed up over 7,000 vital reactions in the body. Most enzymes are very specific in what they do; those enzymes of interest to Peyronies Disease - nattokinase, serrapeptase and bromelain - supply growing evidence they have great potential to reduce the fibrous material of the Peyronies Disease scar.
The idea behind taking enzymes to treat Peyronies Disease is to use a natural process of breaking up and eliminating abnormal fibrous tissue and foreign proteins. That's what these enzymes appear to be designed to do - break up the bad stuff that should not be there, like the nasty Peyronies Disease scar. The body has a wisdom that detects the presence of these abnormal cells and tissue elements, and removes them whenever and wherever possible - using enzymes to treat Peyronies Disease takes advantage of that wisdom. You take advantage of the latest and the best of recent science when you use enzyme therapy to support and stimulate the body's defense system.
Post edited by deleting much of the quote which was a cut & paste from a copyright site selling supplements and printed information. Administrator
Please do not cut and paste pages from other websites. It has ethical and public relations implications. Summarize your question or comment and if it is worthy of promoting, post a a link if you must.
(Links to questionable content will be de-activated so as not to promote sites that prey on unsuspecting patients.)
alcohen, This forum has a very effective search function. If you type "Neprinol" in the search field, I am sure you will get numerous hits that will tell you all you ever wanted to know and probably a little more about Neprinol and Peyronies. This will spare us going over the same stuff ad nauseum. It will also work for other products. If AFTER you read those posts you still have questions, have at it, and we will try to be helpful as much as possible. Happy hunting! - George
Good point George. OTOH, you could have also just said that Neprinol is useless. ;D
Tim
Tim is correct by the way, no one to my memory on this forum has benefited from Neprinol. I personally like Neprinol. It has some good uses I think. But Peyronies is not one of them. And the company that markets it makes a huge markup on it, so they try to get Peyronies sufferers to buy it. Some would consider that approach to amount to a scam. They might be right. I wouldn't spend my money on it for Peyronies, and I used it for almost a year. - George
TIM468 or GEORGE999,
Quick question - why do I feel pain somedays and I can go without pain for a week sometimes - why is there no consistency with the pain - surely you are either in the acute phase which is therefore painful or not.
Also - does candy/sugary sweets increase inflammation due to the glycation proceess or something??
cheers
Well, I'll take my shot at it, Tim can add his 2 cents later on. Personally, I don't believe that Peyronies pain is just random, but that doesn't mean that I can explain it. What you are experiencing fits in with what I have experienced in the past though. I would suggest that there are a number of factors that input to all of this and when the stars line up, you got pain. I certainly believe part of that equation involves refined carbs in the role of bad guys. I also see Omega-6 fats as part of the problem and Omega-3's as part of the solution. And, of course, things like Vitamin E, ALC and Pentox all push against the pain. Stress is also a factor in my opinion. Right now, I am on my anti-glycation diet, along with my anti-glycation supps and Pentox. While all of this got disrupted some weeks back, I was having a lot of intermittent pain. But now all that is under control with no pain ever. I really see pain as a bad sign usually, since it usually means the inflammation is raging. Best to try to keep it cooled down with the above tools. - George
GEORGE999 - interesting stuff when I am stressed at work the pain issue arises - I do believe that stress plays a role in Peyronies Disease somewhat....on the weekend when I am relaxed then there is little or no pain -----what to do - as I really hate the pain??
ALSO what are some anti-glycation supps??
cheers
its also interesting to note that certain food preparation techniques like grilling and frying can increase AGE production. so maybe dietary AGE is something to watch out for.
Hitman, Definitely fried foods are a problem and I avoid them as much as possible. Once in a while is OK for a treat and some fried food is much less of a problem than others. Also, the higher the heat used, the worse the AGE problem. But the more one can avoid this kind of thing the better. - George
Iceman, The number one anti-glycation supp is L-Carnosine. The others would entail a long list. - George
GEORGE999-
is that L- Carnosine or L-Carnitine???
ALso, I have increased my Fish Oil tablets from 1 per day to 8 per day to try and get the inflammation down... do you think this is a good idea
I also think Fried food adds to the inflammation...
Hey guys:
Does anyone have any suggestions on how to keep from getting gasto intestinal problems while taking large doses of Omega 3 fish oil? George999 maybe?
My heart doc put me on 4 1000mg doses per day and it is playing havoc for me with gas and some diarrhea.
Thanks, Old Man
GEORGE999/OLDMAN
can anyone recommend a place to buy L- Carnosine - downunder??
Iceman, It's L-Carnosine, NOT L-Carnitine. They are two completely different supplements. L-Carnosine protects the body from glycation by creating a teflon like coating on protein that keeps glucose from sticking to it (or at least that is how it is thought to work). It is the most basic of anti-glycation supplements. I am taking 500mg per day. The body DOES break it down, so there is concern that too much might not be a good thing either though there are no known toxicities associated with it at this time. Nevertheless, a little bit probably goes a long way. (And it is expensive as well). I am not really knowledgeable as to your sources down under. I should think that it should be available somewhere in Australia since it is such a common supplement. In any case, iherb in Los Angeles will, I believe, ship to Australia and they carry virtually everything in terms of supplements. - George
Old Man, I generally prefer Flax Oil to Fish Oil for Omega-3's, but I think that your doc probably wants you to have the blood thinning effect of Fish Oil as well which Flax Oil doesn't provide. So I am kind of at a loss as to how you might deal with this. It actually might just resolve itself over time as your gut has a chance to adjust to the dietary change. Thats how it works a lot of times with dietary issues. - George
GEORGE999
How come Ive never heard of this mentioned here only L CARNITINE... do you think I should buy some CARNOSINE? Does it work?
OLDMAN,,,,,,I have been taking 1200mg of fish oil twice a day for a long time and with it i take a Pro-Biotic twice a day and i never have experienced any gas problem...This probiotic stuff is really great...I can't live without it.
It's not cheap,,,but its worth it..The brand name is Garden of Life,,,,--Primal Defense---I usually buy the 180 tablets ,,it lasts me about 3 months....I will try to find the website and get it posted for you...
Kimo
Without taking time to pour through the specifics, flax oil is usually not recommended by nutritionist for men because there are studies linking it to prostate cancer. Although the final verdict is still out, the data is troubling.
Any internet search with both the terms will give tons of data.
i prefer flax lignans myself but they do have issue with testosterone i believe
Old man, try using enteric coated fish oil.
The study showing Flax seed meal lowering T was done in mice, not humans. A later study done on humans is said to have shown no effect on T one way or the other. And while it is true that Flax Oil does cause some increase in Prostate Cancer risk, Flax Lignans, often included in Flax Oil supps actually reduce Cancer risk. The reality is that many supps that lower inflammation also raise cancer risk. There was recently a case of a woman dying of lung cancer. The docs took her off of her anti-inflammatory arthritis meds in order to prepare her for chemo. In an amazingly short period of time, they did imaging to assess her status, only to find that the cancer was completely gone. In the case of most foods that are anti-inflammatory, such as flax, the food itself has anti-cancer agents which tend to balance out the cancer risks that accompany anti-inflammatory mechanisms. After all inflammation is tightly tied to immune function. You can't inhibit one without in some way inhibiting the other. So I try to concentrate on making sure I get my supps in whole food form as much as possible. I also try to fight cancer risks in the larger sphere rather than trying to sort out which foods bring risks. It is pretty much known that reducing calorie intake fairly dramatically reduces cancer risks. If you Google the terms "calorie restriction" and cancer, so will get some pretty interesting responses. In fact, I would be as bold to assert that calorie restriction can arrest a cancer already in progress. I think it is a fascinating field of study ripe with opportunities in terms of cancer prevention and treatment.
Also some say that Flax Supps can reduce Zinc and Magnesium levels in the body, so it might be good to include those with the Flax products. I am currently supping with Zinc. I probably really need to get back on the Magnesium as well. Also, elevated, but within normal serum calcium levels have been found to be something of a marker for Prostate Cancer risk. Lots of new information coming out the research pipeline these days. - George
Quote from: Iceman on September 04, 2008, 11:41:35 PM
GEORGE999
How come Ive never heard of this mentioned here only L CARNITINE... do you think I should buy some CARNOSINE? Does it work?
Iceman, I suggest you type "carnosine" into the search box above and carefully read the posts all the way down the page. This will bring you up to speed on Carnosine as it has been discussed previously on this forum. Then if you still have questions, I will be more than happy to attempt to give you an answer as best I can. - George
Hello anyone, and thanks for the forum. Got Peyronies Disease & Dupuytrens, the latter probably from strenuous guitar playing (DD in the left, fretting hand, which, aside from a burning sensation inside the palm, is not constricting).
I take my fair share of supplements, and have my doubts about their potential, whether enzymes or vitamins or amino acids, etc ... Some, like fish oil, most peeps should take anyway; and if nattokinase along with it helps overall circulation that's great. Note: flax, especially with "lignans", contains, like soy, "pseudo" estrogens, and may not be good for men to ingest regularly.
Fishoil notwithstanding, I have to wonder, just how plak (as I prefer to spell it) can BE REMOVED by supplements? Not sure than many posters understand the nature of "plaque" ... It isn't like adding so much Draino to a clogged pipe, or heat, or massage, and, after some "detox" symptoms (that you'd welcome as a good omen), the plak gets carried off to be "eliminated". In many if not most cases of Peyronies Disease, the pipes themselves have become the plak--hence, sigh, surgery.
At 60, lean and seemingly otherwise healthy (who knows what's brewing)--having observed a healthy "lifestyle" for decades--no drugs, alcohol, smoking, junk foods--I also wonder if my accumulations of plak, in penis and hand, represent other unseen deposits in more vulnerable places--arteries, organs.
I fear Peyronies Disease, at least in my case, is not going to just go away, no matter how much Neprinol I take. If a chemical (enzyme or drug) is injected into the penis to dissolve plak, I think this dissolved (hydrolized "fibrin" --a misnomer, IMO, when referring to Peyronies Disease) plak must then be physically removed, in a way similar to liposuction. If the plak is "calcified" a protease or collagenase, wont dissolve it, not the calcium part of it anyway. Hence, sigh, surgery.
Thanks for listening ...
Ironman, Peyronies is caused by inflammation, glycation and calcification. Without addressing those issues, no treatment can hope to be successful. The ONLY supplement that I am aware of with legitimate research behind it showing that it can help with Peyronies is Acetyl L Carnitine. But it has to be used in conjunction with a lifestyle that minimizes inflammation. That means sufficient exercise, restricted calorie diet, and other supplements that help in reducing inflammation. Things like natto and Neprinol are great for some things, but are absolutely useless for Peyronies. Peyronies, like other forms of fibrosis consists of tissue protein gummed up with sugar. The best drug treatment for Peyronies is Pentoxifylline which has actually been shown to even get rid of calcifications. But here again, it takes more than just the Pentoxifylline to do the job. Its an uphill battle but it can be won. And new drugs are on the horizon. There is Alagebrium to kill glycation and Xiaflex to disolve the plaques. Xiaflex, incidentally, is proving useful in trials for treatment of Dupuytrens. - George
GEORGE999 -
I bought some beta alanine as i thought it was L Carnosine - what is the difference and will L Carnosine help with Peyronies Disease - I mean what does it do to aid me in this - I did go through the threads here but couldnt really pick anything from them - I would appreciate your help with this as i may have wasted money on the beta alanine..
Thx
Iceman, Beta Alanine is one of two components of L Carnosine. I believe that L Carnosine helps with Peyronies by preventing glycation and by being a very good anti-oxidant. It also is believed to have anti-fibrosis qualities according to some of the research that has been done on it. That is the best that I can tell you. Some sites are promoting Beta Alanine as being equivalent to L Carnosine but there is research out there that demonstrates it is not. That is the best that I can tell you. Certainly L Carnosine is not at the top of my priorities. My top priorities in terms of oral treatment for Peyronies would be Pentoxifylline, Acetyl L-Carnitine, and Full Spec Vitamin E at this point. - George
I'm 64 years old. Been experiencing penile pain since April of 2006. Brief Summary:
May 2006: My GP (actually a nurse practioner) prescribed 10 day course of Cipro which did no good. 2006-2007 3 trips to board certified urologist for yearly PSA and rectal prostate exam plus a cystoscopy. No problems were found. On each visit to uro I mentioned the pain and he basically said he didn't know what could be causing it and offered no further tests or treatment. Took a very casual attitude. In the meantime I'm in almost daily pain and taking 800 to 1000 mg. ibuprofen almost every night.
April 2008: Woke up one morning with a partial erection and noticed an upward curvature. I immediately concluded "Peyronie's". It was again time for my yearly prostate exam so this time I decided to go to a different uro. I'm in Memphis and the University of Tennessee Med Group is supposed to have some of the best drs. in the area. I called one of their urologists (in fact I think he's the chairman of the urology dept.) and before making an appointment, made sure that he was familiar with Peyronies Disease and had a treatment protocol. This Dr. is a professor at UT Med school and practices 2 days a week. I was assured that he was well versed in the treatment of Peyronies Disease. Now I'm thinking I'm on the right track. I saw him last week and he felt my penis and said that I had a small amount of plaque at the base. Diagnosis: Peyronie's. He immediately said that "We need to get you on 400 mg. vitamin E per day to soften up the plaque and come back in 6 months". He said something like 50% of cases stay the same, 25% get better and 25% get worse. I mentioned Pentox which he had never heard of. Said it wasn't mentioned in any of the research lit. that he had read. To his credit he didn't want to do any kind of injections, even to induce an erection as it could cause further scarring. He said to take a picture. He was familiar with Verapamil and said that some of his patients had said that they had improved using the transdermal type. He said "The mind is a very powerful thing", leading me to believe that he didn't have much faith in Verapamil and that these patients were merely experiencing the placebo effect. He said he could give me a script for a VED, but that if I can get an erection then I really don't need one. I'm able to get a firm erection, but my wife and I have had little sex in the last 2 years due to the pain. He encouraged me to have sex as that could be beneficial. He went on to say that there is very little research in this area as all the research funds are going for cancer and heart research because those are the big killers in our society. I asked him if he had heard of the Auxilium clinical trials with Xiaflex and he hadn't.
So at this point I'm supposed to take 400 mg. of vitamin E and go back in 6 months. My PSA had gone up from 2.2 last year to 3 and he seemed more concerned about that, but I've read that I'm in the normal range. My question for you guys is, "What do I do next?" I've read very "mixed reviews" about vitamin E and was disappointed that this was all he had to offer. I plan to go ahead with the vit. E. What's the best type to use? (Mixed tocos, alpha, gamma, a good brand and place to order it on the net, and any further suggestions from anyone on this forum.) The pain subsided somewhat in May of this year and I'm no longer taking the ibuprofen although I'm experiencing some pain almost daily. Sometimes aching, sometimes burning either during urinination or afterwards (my urine sample was clean). The Dr.said that with Peyronie's I should only be feeling pain when erect, but I've read many posts on this forum that seem to contradict that. Anyway, sorry for the long post, but any suggestions would be greatly appreciated, especially about the type of vit. E and other options. Thanks.
Fred
Hi, guys. I'm the partner of a person with Peyronie's, Dupuytrens, and Ledderhose/plantar fibromatosis. He has already had a tumor removed that pathology defined as fibromatosis, but these we have seen that these disorders are all collagen inter-related after doing extensive research. I was wondering if anyone has heard of Pau D'arco, or had tried it. The American Cancer Society and several universities have articles on it, if you google the name. While very controversial (as many of the treatments are), I wondered if it might work on those whose Peyronies may be the result of fibroses, as opposed to injuries. We have no idea about my partner's cause or state of condition yet, since we haven't found a doc around here who knows much about any of these conditions. We are still waiting to hear about an appointment with a specialist on Peyronies. I found a couple of links saying the tumors had reduced/disappeared, or did not recur while on Pau D'arco.
Any thoughts? I was going to go get some of the natural products mentioned in this subject for him to try, but haven't yet, was not sure which to try first. Vitamin E seems to be of no effect other than to upset his stomach, and with recent articles on that, he is wary of taking more.
Thanks,
Jazz
Jazz, First of all you have to understand that fibrosis and cancer are completely different processes. Fibrosis is driven by over active immune processes and cancer thrives on under active immune processes. The most popular treatments for Peyronies are classic anti-fibrotic approaches. Vitamin E, Acetyl L Carnitine, and Pentox rank at the top. In the case of Vitamin E, the typical synthetic type that you find everywhere is useless. The best shot for Vitamin is the full spec version that consists of 400IU of NATURAL alpha tocopherol and around 300mg of natural gamma tocopherol. Taking more than 800IU per day is not helpful and can be harmful. Acetyl L Carnitine actually has a study showing it to be effective against Peyonies. I am currently taking 500mg 4X per day. And Pentoxifylline is a classic fibrosis treatment commonly dosed at 400mg 3X per day. These treatments tend to calm the production of cytokines that stimulate tissue accumulation. All of these products are best taken with food so as not to upset the stomach.
Also, if you tell us in what area you are located, someone here might be able to suggest a doctor. - George
Quote from: jackisback on August 15, 2008, 10:53:33 PM
I feel that coffee may be one of the worst things for this too.
Is the verdict still out on this? George999 why is coffee a bad thing for Peyronies Disease?
Quote from: jackisback on August 15, 2008, 10:53:33 PM
I feel that coffee may be one of the worst things for this too.
Quote from: wayne999 on September 12, 2008, 09:10:52 PM
Is the verdict still out on this? George999 why is coffee a bad thing for Peyronies Disease?
Personally, I'm not sure it is all that bad. Nevertheless, I avoid it. I does have caffeine along with healthful antioxidants and caffeine is a stimulant which I don't see as being good for Peyronies. Stimulants put a certain stress on the body and can do things like raising blood pressure. I much prefer cocoa which has more beneficial components and far less caffeine. - George
GEORGE999 - can you please post the link with the study that shows the positive effects of ALC on Peyronies Disease mentioned on your most recent post
cheers
Here they are:
These results suggest that acetyl-L-carnitine is significantly more effective and safe than tamoxifen in the therapy of acute and early chronic Peyronie's disease. (http://www.ncbi.nlm.nih.gov/pubmed/11446848?ordinalpos=4&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)
Intraplaque collagenase, intraplaque verapamil, intraplaque interferon, oral acetyl-L-carnitine, oral propionyl-L-carnitine and oral colchicine have proved effective in Peyronie's disease. (http://www.ncbi.nlm.nih.gov/pubmed/15829017?ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)
Oral drug therapies include potassium para-aminobenzoate (Potaba), vitamin E, colchicine, tamoxifen, propoleum, acetyl-L-carnitine, and propionyl-L-carnitine. (http://www.ncbi.nlm.nih.gov/pubmed/16698449?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)
Placebo-controlled studies examining these agents have failed to show a consistent beneficial effect on Peyronie's disease, with the exception of para-aminobenzoate, which may decrease plaque size and curvature, and acetyl-L-carnitine, which may reduce erectile pain and inhibit disease progression. (http://www.ncbi.nlm.nih.gov/pubmed/17352513?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)
With ALC as with other treatments, some people and docs just write them off because they don't always *seem* to work. When people treat with ALC, for example, they expect the Peyronies to "get better". They don't give any credit to the ALC if things just stop progressing and stay the same. Another big problem is that people expect a solution in a pill. They are unwilling to make the kind of general lifestyle changes and to employ multiple treatments. Thus, ALC may work well in someone getting sufficient exercise and adhering to a Mediterranean diet, yet seem to utterly fail in the case of someone who continues to eat junk food and use recreational drugs on the side. - George
would be interesting to know which form of Vitamin E they were using in that study?
Thinking about it, the "Mediterranean Diet" may be why those Italians do so much better with certain interventions. Either that, or the docs fake the results for personal gain and glory...
Tim :P
Is the Musashi L arginine strong enough? I noticed in the John Turtle MD website he says L-Arginine 400 mgTID. Is this strength something you need a prescription for?
ICEMAN: Please delete messages from your inbox, I can't send you PM's as your inbox is full.
Tim and George,
I just went to GNC and got the 400IU GNC Isomer E. Iwas told it was the most easily absorbed and also provided the most antioxidant effect. On the front it says "Nature's perfect blend of vitamin E" "Supplies all 8 tocopherols and tocotrienols". Here is something that I don't understand: It say's "Laboratory testing confirms that Isomer E demonstrates at least 100 times more antioxidant capacity than synthetic vitamin E and 100% more than natural vitamin E". If it's not synthetic and not natural what is it? It does say it supplies the full spectrum of vitamin E. Is this one OK? It says take one a day. Is that what you'd recommend? Thanks.
Fred
Honestly, I would find someone else right away. You can start taking the vitamin E for better health, but from what I have learned on here from a variety of posters is that it really does nothing for Peyronie's Disease. Everything about this disease is extremely annoying, particularly the actual part of finding a doctor who knows enough to try and help...
Fred, You are doing all the right things. I guess you might need to start looking for a doc who knows more than the one you found first.
Tim
wayne999 - Im on Musashi L-Arginine and it seems fine - but what do I know?? - I ve also ordered L-Carnosine from www.iherb.com as it seems to also work for Peyronies Disease - george999 recommended it - you just gotta keep plugging away - al least my pain has subsided a bit over the last couple of weeks - thank god for that as the pain was getting unbearable and really getting me down - now theres hardly any pain --and i think the VED after 4 months usage is staring to work or maybe its just wishful thinking. alos I have radically altered my diet - no sugars - no crap food all healthy from now on - I think that the food you eat has an effect on Peyronies Disease - anyone have any thoughts on this point??
cheers
Note Fred's vitamin E question below moved from another topic.
I'm not sure why, but my uro has given me my last prescription for pentox, which will leave me two months short of the 8 months that forum members said is needed for the drug to improve peyronies disease.
I'm going to try to find another uro or internist who might prescribe it for me before my prescription runs out, but in case i don't can anyone tell me how to determine of the pentox i would purchase from online pharmacies is actually what is claims to be. if i purchase it from a Canadian pharmacy is that illegal.
i look forward to your responses.
Bo
So far I have identified three substances that boost TNF-Alpha activity which *should* be good for dealing with Peyronie's:
1: Vitamin D3
2: Garlic
3: Noni
- George
gEORGE999 -
do you recommend adding D3 to the growing list of supps i am taking??
I'm just sharing what I am now looking at. I find this whole TNF-Alpha revelation to be fascinating and would like to try to exploit it a bit and see what effect it has and share how it is working out for me as I go along.
I think the one caution about D3 is that for most people it is perfectly safe in quite large doses BUT there are exceptions. Some people have specific conditions that result in ANY amount of oral D3 to cause them problems. So I don't recommend large amounts of D3 without your doc knowing about it and approving it.
AND, I have to emphasize again, I AM NOT A DOCTOR, so please don't consider me to be some sort of infallible expert on these things. On occasion I can likely be helpful in sharing what I have learned (or think I have learned), but I get really nervous when I get the sense that people are betting there very lives on my perceived expertise. So please consider carefully any supplements you plan on taking, and check them out yourselves before you commit to them. I am not going to intentionally try to mislead or harm anyone, but I have made mistakes in the past and will probably make more. If I suffer because of my own goof, I can swallow that, but I would feel really badly if someone else suffered for trying to follow what they perceived to be my advice. - George
GEORGE999.
So this is what I am taking:
ALC
L Crnosine
L Arginine
Vitamin E
Pentox
Fish Oil
Beta Alanine
VED
Is this enough - or am i taking too much??
I am happy to be the guinea pig - let me know what else i should take???
I think of TNF as a pro-inflammatory cytokine.
Pentox also is well known to inhibit the release of TNF in experimental models.
Why do you think it might be a good thing, George?
Tim
Tim, this certainly does represent a shift in thinking on my part. As you point out, I think the whole TNF-Alpha issue is open to discussion. That is why I recently issued something of a warning about blindly following me down this path. To be honest, the supplements I am most attracted to at this point, in terms of TNF-Alpha, are not so much the ones that simply increase its levels, but rather the ones that are immunomodulatory, that is, the ones that tend to increase its effectiveness and specificity, so that it targets what it needs to target and does its job rather than assaulting healthy tissue. D3 is the outstanding example in terms of what I am referring to. With sups like D3, all the research is indicating that the upside is huge and the downside, while certainly present and not to be ignored, is minuscule. I suspect that in the case of Peyronie's, TNF-Alpha is not doing its job correctly in terms of regulating things like fibroblasts. But I am certainly open to guidance on this concept. I think one of the great things about this forum. It allows us to present and discuss these concepts. - George
Most potential Peyronie's treatments could be conceptualized in some broad categories.
1) Antioxidants - Peyronie's involves a process of oxidation that is destructive to tissues. Antioxidants quench the free radicals that contribute to this process.
2) Antiglycants - Peyronie's involves a process of glycation. The more we can do to impede this process, the better will be our progress.
3) Anti-inflammatories - Peyronie's involves a process of uncontrolled and inappropriate inflammation. Anti-inflammatories can be used in an attempt to calm this undesirable reaction.
4) Immunomodulators - Peyronie's involves inappropriate immune system activity wherein our own immune system attacks our own tissues. Immunomodulators help our immune system to distinguish the good guys from the bad guys, thus avoiding biological friendly fire casualties.
Number 4, of course, is the new one on my list. A number of guys have posted here in the past suggesting an autoimmune aspect of Peyronies. At times, we, myself included, have just brushed them off and not really given this aspect enough of our attention. But lately, research reports involving immunomodulators like Vitamin D3 have been hitting the news wires furiously and it has been virtually impossible for me to ignore them. The latest is a finding that Vitamin D3 deficiency is predictive of multiple sclerosis. MS is a disease wherein the immune system attacks the sheathing or insulation covering the nerve fibers, producing lesions (plaque) that impairs their functions and, in the process, creates a great deal of inflammation. The lower one's Vitamin D3 status, the more likely they are to succumb to MS. It involves different tissue than Peyronie's and different aspects of the immune system, but there is a parallel that can't be ignored. What we are learning also is that it is possible that these things can happen as a result of a minor bacterial or viral infection. A bacteria, for example, can maintain a chronic infection that attracts and stimulates the body's immune system. But some bacteria are capable of "hiding" from the immune system through certain stealthy techniques. For example, some of them emit toxins that block key immune system receptors in their vicinity. In these cases the immune system may attack healthy tissue in a desperate attempt to find the bad guys. Friendly fire. Once healthy tissue is inflamed, the signal goes out, "we found the problem", and reinforcements arrive. Not a good scene. Immunomodulators help here because they can help the immune system to see through the smoke and better differentiate the good guys and the bad guys. This is why, perhaps, in some cases, an anti-biotic might seem to help in the case of Peyronies. If it can knock out a pathogen that is overstimulating the immune system, the collateral damage may cease. In addition to D3, there is the old standby, Garlic, and Melatonin. More and more research is revealing the immunomodulatory capability of melatonin. Melatonin is released when we are subjected to darkness and when we are sleeping. Younger people generally are able to produce sufficient amounts of melatonin and do not need supplementation. That is why younger people are able to sleep very soundly. Those of us older that 50, however, gradually lose our capability to produce sufficient melatonin. At this point I am taking a melatonin product before bedtime that contains 1/2 gram of instantly released melatonin and 1/2 gram of slow time release melatonin. This gets me about 4hrs of sound sleep. I am now considering possibly trying an additional dose at the time I usually awaken after that initial four hours. I consider sound sleep to be very healing and a lot of us, especially the older ones among us, don't get enough sound sleep. Interestingly, in both the case of Vitamin D3 AND Melatonin, there is a curious MS connection. 1) People in latitudes with the most sunlight exposure are generally less likely to get MS and 2) the worst MS outbreaks occur in the summer during times of less darkness. At this point there is an emerging causative link in both the case of D3 and melatonin. Additionally, all three are known to be preventative in terms of cancer. It is still unknown as to whether they can be used as effective treatments. Nevertheless, I am going to try them. I have been actually using them on and off now for some time, but now I am going to begin to make a concerted effort to use them strategically together to see if I can find them helpful. None of them are really very expensive, nor potentially very harmful. If anyone can come up with any additional immunomodulators, that would certainly be of interest. - George
Note: There is some evidence that too much melatonin can actually induce autoimmune reactions, so one should be careful with melatonin. There does not appear to be the same danger with D3. - George
Quote from: PubMedMost organs and immune cells have a vitamin D receptor, and some also have the capacity to metabolize 25-hydroxyvitamin D to 1,25-dihydroxyvitamin D. 1,25-Dihydroxyvitamin D is a potent immunomodulator that also enhances the production and secretion of several hormones, including insulin. ... Children and adults need at least 1000 IU of vitamin D per day to prevent deficiency when there is inadequate sun exposure. (Referrence) (http://www.ncbi.nlm.nih.gov/pubmed/18778589?ordinalpos=10&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)
Quote from: PubMedUltraviolet radiation is the major cause of skin cancer, but promotes vitamin D synthesis, and vitamin D has been inversely related to the risk of several common cancers including prostate, breast and colorectum.(Referrence) (http://www.ncbi.nlm.nih.gov/pubmed/18770862?ordinalpos=50&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)
Quote from: PubMedOver the past two decades, it is now recognized that vitamin D not only is important for calcium metabolism and maintenance of bone health throughout life, but also plays an important role in reducing risk of many chronic diseases including type I diabetes, multiple sclerosis, rheumatoid arthritis, deadly cancers, heart disease and infectious diseases. ... This review will put into perspective many of the new biologic actions of vitamin D and on how 1,25-dihydroxyvitamin D is able to regulate directly or indirectly more than 200 different genes that are responsible for a wide variety of biologic processes.(Referrence) (http://www.ncbi.nlm.nih.gov/pubmed/18801384?ordinalpos=58&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)
Quote from: PubMedVitamin D functions in the body through both an endocrine mechanism (regulation of calcium absorption) and an autocrine mechanism (facilitation of gene expression). ... Recent data indicate that cholecalciferol (vitamin D(3)) is substantially more potent than ergocalciferol (vitamin D(2)) and that the safe upper intake level for vitamin D(3) is 10,000 IU/d.(Referrence) (http://www.ncbi.nlm.nih.gov/pubmed/18525006?ordinalpos=79&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)
Quote from: PubMedThere is growing interest in the contribution of vitamin D deficiency to autoimmunity. ... A number of recent studies have highlighted the association between systemic lupus erythematosus and vitamin D deficiency. Vitamin D deficiency skews the immunologic response towards loss of tolerance. Adding vitamin D in vitro reverses immunologic abnormalities characteristic of systemic lupus erythematosus.(Referrence) (http://www.ncbi.nlm.nih.gov/pubmed/18698173?ordinalpos=88&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)
Quote from: PubMedVitamin D, besides having well-known control functions of calcium and phosphorus metabolism, bone formation and mineralization, also has a role in the maintenance of immune-homeostasis. The immune-regulatory role of vitamin D affects both the innate and adaptive immune system contributing to the immune-tolerance of self-structures. Impaired vitamin D supply/regulation, amongst other factors, leads to the development of autoimmune processes in animal models of various autoimmune diseases. The administration of vitamin D in these animals leads to improvement of immune-mediated symptoms. Moreover, in human autoimmune diseases, such as multiple sclerosis, or rheumatoid arthritis the pathogenic role of vitamin D has been described. The review aims at describing the complex immune-regulatory role of vitamin D from the cellular level through autoimmune animal models and depicting the known contribution of vitamin D in the pathogenesis of human autoimmune diseases.(Referrence) (http://www.ncbi.nlm.nih.gov/pubmed/18510590?ordinalpos=143&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)
Quote from: PubMedThis study suggests that vitamin D is associated with a reduced risk of breast cancer regardless of ER/PR status of the tumor.(Referrence) (http://www.ncbi.nlm.nih.gov/pubmed/18756015?ordinalpos=153&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)
Above are samplings from just a few of more than 100 papers released THIS MONTH ALONE on Vitamin D issues. Perhaps you can see in this why I am currently really excited about the potential of Vitamin D in the case of Peyronie's which has some major autoimmune characteristics. Vitamin D affects risk for just about every disease on the map because it is tied directly to proper genetic expression. The huge importance of its role in the human body is just now beginning to be understood by the medical community and the studies concerning it are rolling out at an unprecedented rate. I hope this little taste stokes your collective imagination as to the possibilities these discoveries present for us! - George
George 999 - just went and got D3 - i will let you know if it helps -
http://www.ncbi.nlm.nih.gov/pubmed/17449494
although it is only an animal study, and it's the only in vivo study with actual clinical outcomes, it looks very promising.
HAs anyone tried OZONE therapy.. I understand it is used in Europe for all kinds of conditions-I know a person who uses it to treat SCLERODERMA... was on transplant list for new heart etc... now she is off and doing great by using OZONE... (Blowing her Docs away.. as they cannot understand) SCLERODERMA conditions are very similar to Peyronies Disease.. Hopeful-perhaps a new thread could be made for Medical Ozone... Hopeful
Quote from: Hitman on September 23, 2008, 01:28:01 AM
http://www.ncbi.nlm.nih.gov/pubmed/17449494
although it is only an animal study, and it's the only in vivo study with actual clinical outcomes, it looks very promising.
I have used this myself and it SHOULD be helpful. In my case, I ended up stopping it because of perceived side effects. But now I think those perceived side effects where actually being caused by something else. This SHOULD certainly be useful in treating Peyronies. - George
Quote from: hopeful on September 23, 2008, 08:06:00 AM
HAs anyone tried OZONE therapy.. I understand it is used in Europe for all kinds of conditions-I know a person who uses it to treat SCLERODERMA... was on transplant list for new heart etc... now she is off and doing great by using OZONE... (Blowing her Docs away.. as they cannot understand) SCLERODERMA conditions are very similar to Peyronies Disease.. Hopeful-perhaps a new thread could be made for Medical Ozone... Hopeful
The *PROBLEM* with OZONE is that it is *KNOWN* to be toxic. It is used around the world as an anti-pathogenic treatment. It is increasingly replacing chlorination for water treatment (along with UV) since it leaves no residue in the water. I would be VERY careful with it. Having said that, there is, indeed, a lot of research being done with it. It is administered only in conjunction with oxygen and works by somehow helping to deliver additional amounts of that oxygen to oxygen starved tissues. How that happens is not known at this point. So it is indeed promising, but, since it is also known to have significant toxicity, it is not something to be treated as a do-it-yourself project. It should probably be discussed on the "Developmental Drugs and Treatments" thread. Scleroderma is a terminal illness, Peyonies is not. If I had something like Scheroderma, I would likely be willing to take risks that would be foolish to take for the sake of Peyronies. Just my opinion. - George
George999 - what are your thoughts on Topical Verapamil?? - do you think its worth a try amd how do I get it??
Does Pentox help in theory or practice? Why do so many Uro's not want to prescribe it? My Uro denied my request. Said he used it years ago with no positive results. Who can say they saw a definate inprovement that was definately attributable to Pentox.
Hornman - hard to say - ive been on pentox for 6 months now and I believe that it helps with the pain and halting disease progression...
I am on Pentox and haven't seen any noticeable improvement yet but have only been taking it for five weeks. I am taking it because as far as I can tell it certainly can't HURT. I would rather do SOMETHING than just wait around and feel sorry for myself. It is puzzling that many people here say their uro's refused to prescribe it. Seems odd.
Hornman,
Your urologists' comments are scary but reflect two realities IMX.
First, doctors tend to act irrationally, and make many decisions based on their own experience, and not on published data. Thus, if he had a couple of failures, he is probably going to give up on it.
Second, assuming that he actually did try it and it failed, it underscores the reality we all face - that each of us are different and that there will not be one cure-all, including Pentox.
Tim
has anyone used or benefitted from TRIBULUS????
I have certainly used it in the past. I didn't really notice any perceptible effect from it. But then, I prefer to concentrate on the stuff with really interesting research behind it. Things like Pentox, ALC, and D3 at this point. - George
I think it is probably time to share a bit more on melatonin since it is a popular supplement which I think that those of us with Peyronie's should be aware of. I had been taking melatonin for some time, both to help me sleep well at night, in which it was very effective and also to help deal with my blood pressure issues in which it was also effective. I also knew that it was some sort of immune system tonic, which I ASSUMED might be beneficial in terms of Peyronies. WRONG! The events of the last few weeks and the new revelations regarding Vitamin D3 have led me to take another look at melatonin. What I have learned is that melatonin DOES stimulate the immune system, but unlike D3, it does so in a way that blunts its focus and tends to make it like a bull in a china shop. In fact there are now a quite a few warnings on reputable medical school sites about NOT TO USE MELATONIN if you have ANY AUTO-IMMUNE type disorder. In the past, I never really thought of Peyronie's in terms of auto-immune issues, but that has now changed in a big way. At this point, I am absolutely convinced that melatonin triggered my problem with my legs. That eventually dissipated and even my tail bone pain went away completely. But just before discovering all of this, I was having trouble sleeping and decided to resume taking the small amount of melatonin before bed time. Within hours the pain was back in both legs with an intensity far in excess of what I initially experienced. Obviously I won't touch the stuff again. But with this auto-immune connection, I am realizing that it could have really been negatively impacting my Peyronie's as well. And, as I look at my past, I have had problems with things like plantar fasciitis, another disease with an auto-immune connection. And some years ago I nearly died from ITP, a life threatening auto-immune disease.
So at this point, I am stuffing down the D3 which really seems to be helpful in dealing with the leg pain and I have also noted what I perceive to be some tiny improvement on the Peyronie's front. From what I am reading, it can take months to get levels of D3 up to normal when they are severely depressed. Another interesting thing is that any form of inflammation can radically deplete the body's supply of D3. In all of my years I never got sun exposure and avoided both milk and fish, but my docs always said not to worry about Vitamin D because my bones were OK. But now what we though we knew so well is being blown away by a torrent of new discoveries. But I am trying to look forward and not back and not get depressed over past mistakes on my part, but rather to try to take advantage of new knowledge as it becomes available. I am so thankful that at the very point in time where I was discovering the bad news about melatonin, I was also discovering the good news about D3. - George
what about supplements that can boost immune function e.g. olive leaf extract
in theory, can these help?
George,
I knw this could be a repeatitive ques but I could not find definitive answers, want to knw your views on polyenolphosphatidyl-choline,
NAC N-ACETYL CYSTEINE, SAM e and Sho-saiko-to(Bupleurum is the main ingredient) for peyronie's/fibrosis.. If this is not the right place or the question is already answered in the forum pls direct me to the same.. Thanks
Quote from: Hitman on September 27, 2008, 04:52:00 PM
what about supplements that can boost immune function e.g. olive leaf extract
in theory, can these help?
I actually used olive leaf for a while, but for my hypertension, not Peyronie's. It was not helpful, by the way, at least not in my case. As for the whole immune function aspect, its actually a double edged sword. Its not a matter of the immune system being either too weak or too strong. Rather its a matter of the immune system misfunctioning and attacking and destroying healthy tissue. So we need to be very careful about boosting or stimulating the immune system. I have learned that the hard way as I pointed out in my post below. In addition to olive leaf, I have also used garlic and mushroom extract which are known to boost the immune system. I, personally, have not had a problem with them. But after my experience with melatonin, I am not so sure I would want to take a chance. The really best shot out there on the immune side right now is Vitamin D. All you have to do is to look over some of the extensive research that has been done on it recently. It has been shown to be useful for BOTH strengthening the immune system AND for dealing with auto-immune problems. A few days ago, I was interested in trying any kind of immune function enhancer. Tim politely and kindly threw out a caution on that one. And, after tasting the fire, I've been cured. - George
Quote from: young25 on September 27, 2008, 05:20:07 PM
George,
I knw this could be a repeatitive ques but I could not find definitive answers, want to knw your views on polyenolphosphatidyl-choline,
NAC N-ACETYL CYSTEINE, SAM e and Sho-saiko-to(Bupleurum is the main ingredient) for peyronie's/fibrosis.. If this is not the right place or the question is already answered in the forum pls direct me to the same.. Thanks
polyenolphosphatidyl-choline - I like it actually. I don't know if its really useful in terms of Peyronie's but there is some research out there I think that indicates some anti-fibrotic value. I am taking three per week.
NAC N-ACETYL CYSTEINE - Supposedly helps with Peyronie's and some say a good companion to ALC. I really don't know. I was taking it, but am not now. I have a huge supply and probably will at least work on finishing that one of these days.
SAM e - Interesting stuff. I've never used it, probably more due to the price than anything else. If anyone has had success with it I would certainly like to hear about. I know some people on this forum have used it.
Sho-saiko-to(Bupleurum is the main ingredient) - I don't know a thing about this one, to tell you the truth. This is the first time I have ever heard of it. Just looking it over right now, several of its ingredients are certainly familiar. A prescription drug in Japan and it has some research going on around it here in the US. Interesting stuff, thanks for digging it up. - George
George,
Don't you think that if we were deficient in Vit.D we would have Rickets? I know that Rickets symptoms like bowed legs are with people for life even after serum D levels have been returned to normal. Hopefully that would not be the case with Peyronies.
Quote from: hornman on September 30, 2008, 02:17:03 PM
George,
Don't you think that if we were deficient in Vit.D we would have Rickets? I know that Rickets symptoms like bowed legs are with people for life even after serum D levels have been returned to normal. Hopefully that would not be the case with Peyronies.
If you read the current research on Vitamin D, you will see that the amount of Vitamin D necessary to prevent rickets is NOT ENOUGH to prevent auto-immune problems like Peyronie's. Researchers are realizing that current Vitamin D recommendations are far to low to maintain immune system health. So you CAN be low in Vitamin D, but not low enough to contract rickets. An additional problem is that inflammation depletes Vitamin D, so it becomes a vicious cycle. Low Vitamin D triggers inflammation which decreases Vitamin D levels even further. At this point we really don't know the effect of added Vitamin D on people who already have Peyronie's but the research on animals is very promising. In the case of animals it seems that Vitamin D is effective on Multiple Sclerosis, another auto-immune syndrome, in a DOSE DEPENDANT fashion, which means the more they give the more effective it gets. - George
Quote from: George999 on September 27, 2008, 03:19:03 PMIn fact there are now a quite a few warnings on reputable medical school sites about NOT TO USE MELATONIN if you have ANY AUTO-IMMUNE type disorder.
Thanks for the info George. I had always assumed anything to help sleep would help Peyronie's, and there are even some posts in this topic's childs boards which praise small dosages of prescription antidepressants for better sleep & nocturnal erections. I will stay away from Melatonin.
Quote from: jackisback on October 01, 2008, 12:53:22 AM
...there are even some posts in this topic's childs boards which praise small dosages of prescription antidepressants for better sleep & nocturnal erections.
Just to clarify, it is not small doses of anti-depressants in general (many inhibit erection), it is specifically very small dose of Trazadone.
The Trazadone is to cause Nocturnal Erections - it's a side effect that may help penile health in general especially for those with mild ED. Trazadone used to be one of the main drugs used for ED before Viagra.
Tim
Woo! After a year of asking and explaining the method of action to my urologist, he has agreed to prescribe me pentox! Now I just have to wear him down on the VED and Trazodone scrips! I took my first dose today and I could feel the anti-inflammatory effects almost immediately. For a while it cut out all of my pain! Now, about 7 hours after taking it I am feeling a little sore but VERY optimistic!
Question, however -- I know some members have reported to have trouble ingesting pentox due to the gastrointestinal effects. So far all I've exhibited is burping and nausea, but I feel like indigestion and effects on the other end of the digestive train are on the way. Do any of you exhibit these symptoms, specifically the nausea, and have any methods of dealing with it? I'd appreciate any feedback!
Lastly, has anyone heard of a supplement called Wobenzym N? My alternative pharmacist reccomended it -- but he called for 5 pills a day, at $120 per bottle of 400. I can't afford it to try ATM! I've added Bromelain, Vitamin-D (On George's suggestion), and Acetyl-L-Carntinine. I'm using Viagra infrequently (can't afford daily treatment) and L-Arganine religiously. Am I missing anything here?
ocelot556:
You don't need an RX for getting a VED. There are several web sites that carry them as OTC models. It seems that the weapon of choice right now can be found at this site: www.fitzz.com
Click on this site and it will take to their home page. Look for the sexual health link and open it. You will find that they have this VED for a very reasonable price: Vitality Plus three cylinder VED priced at $229.99 with free shipping.
If you need to confirm its use with your uro, fine, but you won't need an RX from him to buy the above unit. It is a very good medical quality VED and easy to use. There are a number of guys already taking advantage of this price structure. The original Augusta Somaerect can cost up to $500.00 or more, but the Augusta Vitality OTC model is basically the same unit but much cheaper.
Old Man
Tim and Hawk,
Thanks for clarifying, both for myself, and for readers, I do not want to spread misinformation.
The reason that I said that was because I have been prescribed Amitriptyline for sleep trouble, which I found out online is also an antidepressant, much like the Trazadone is an anti-d, but used for sleep by members on the forum. I looked on the askapatient website for both drugs, and both drugs had some people saying it killed their sex drive, and others saying that it gave them great erections. Since I have been informed that specifically Trazadone has erectile enhancing qualities, I think I will explain my situation to my doctor and try to get a prescription for that from her.
Curious to Hawk and anyone else who uses or has used it: can you give an update on your opinions and perceived benefits of the drug, and do you still use it?
alcohen:
Are you on PENTOX or ALC??
Sounds encouraging Ocelot! Wobenzym N does not seem to have any clinical studies to back up the (wild) claims of it's efficacy. It may be a great antioxidant, but the data are sparse to say the least, and the ingredients seem to be hard to identify.
Tim
I did some extended research on the Vitamin D issue and found some interesting claims regarding an immune system and the D. It relates to, so called, Marshall Protocol, the treatment of bacterial or inflammatory autoimmune diseases, you might have already heard of it, but I haven't.
However, I have some doubts of reliability of that articles and claims but would like to know your opinion before I start the D3 taking.
http://bacteriality.com/2007/09/15/vitamind/
Well, if it is only a commercial fake I am sorry for posting it.
There is actually a lot of controversy about the D, I have found. Medical society is totally polarized regarding the D. Maybe George could say something about it, he is more into this issue..
R3
Ralf, The studies on Vitamin D and auto-immune diseases are numerous. Taken alone they tend to be somewhat cryptic and open to question. But taken together they paint an ominous picture in terms of those with Vitamin D deficiency. Whether or not Vitamin D might be helpful to those already suffering from auto-immune diseases is just now beginning to be explored. But it is virtually certain at this point that deficiency IS highly associated with risk of getting those diseases. There are a few good overviews out there on Vitamin D. Here is one:
Quote from: Harvard Health PublicationsVitamin D: Enjoying its day in the sun (http://www.health.harvard.edu/newsweek/Vitamin-D-Enjoying-its-day-in-the-sun.htm) -> There are also intriguing reports of protection against multiple sclerosis, rheumatoid arthritis, and other autoimmune conditions. Researchers theorize that vitamin D is crucial to the regulation of Th1 cells, an important group in the complicated menagerie of immune cells. When the vitamin is in short supply, the Th1 cells may run amok, attacking tissues in the body instead of fighting off germs.
Here is another example:
Quote from: University of MinnesotaPain linked to vitamin D deficiency (http://www1.umn.edu/umnnews/Feature_Stories/Pain_linked_to_vitamin_D_deficiency.html) -> Vitamin D deficiency is associated with significant risks for osteoporosis, hypertension, diabetes, cancer, and autoimmune diseases such as multiple sclerosis. Plotnikoff says this new study supports more routine screening for vitamin D deficiency.
My own take on this is that if deficiency is ASSOCIATED with problems like Peyronie's, I don't want to remain deficient. Even if having sufficient Vitamin D is not the cure, it may well be instrumental in preventing my condition from becoming worse and I am not going to wait around for another five years for new studies to demonstrate that before I take advantage of it. If you click on the above links and read the articles in their entirety you will be even more motivated to take some Vitamin D. Right now, I am taking 10,000 IU per day and am on a regular blood test schedule with my doc to make sure blood calcium does not get out of range. I am also using UV light to try to drive levels up as well. The problem I am having in my legs has been diagnosed as neuropathy and the UV light has nearly canceled out the resulting pain. - George
George,
You did not comment on Ralf's link.
I am aware of studies that first suggested that Vit D was preventative and possibly treatment for prostate cancer. They now find there seems to be a narrow window. Elevated levels of D seem to result in a higher incidence and more aggressive forms of prostate cancer.
Hawk, I think it is bad science published on a .com site by someone who is a crackpot. Its the same as those who line up all sorts of data to connect every malady in the world to things like immunizations and fluoridation. I never trust the info on these commercial sites. Only the info on med school sites and government health sites is valid in my opinion. The fact that she states that Vitamin D provides no benefit for osteoporosis sufferers and that Vitamin D deficiency does not cause rickets shows her to be a first class crank. I, myself, found relief from nasty fungal infections in my mouth by taking large quantities of Vitamin D. To term it "immune-suppressive" is ridiculous. These people believe that cancer is caused by bacteria. They simply are not credible. The whole concept of the Marshal Protocol is dangerous and is not supported by the medical community at large. Don't take this stuff seriously. - George
PS: I have been searching in vain for studies that show Vitamin D to promote Prostate Cancer, but I sure find a lot demonstrating it to be beneficial both in preventing AND retarding Prostate Cancer. If you can provide some links to the contrary that would be helpful, but please no links promoting things like the Marshal Protocol. - George
Thank you very much George. I wrote I was doubting of the reliability of that site but just wanted to know your opinion or explanation as I consider you as a well educated person regarding this oral treatment stuff. I didnt mean to promote the MP, heaven forbid, but the Vit D article was connected to it.
So thank you again and I deeply apologize if I disturbed you.
Ralf3 :)
Ralf, Not a disturbance at all! Thank you for posting it. I wasn't even going to comment on it until Hawk sort of forced the issue. But one has to be very careful with so many alternative medicine approaches that pick and choose among studies and take one study that fits their model as opposed to another 99 parallel studies that don't. In the case of Vitamin D there are just 100's of studies and papers that validate its role in SUPPORTING the immune system. Certainly there are bacteria that hamper the immune system by messing with the Vitamin D receptors. No one doubts that. But Vitamin D does not hinder the immune system by the way it affects its own receptors, rather it enhances it. In terms of immune suppression, I would be much more concerned about stuff like Pentox. But there are times when one needs to mod down the immune system. And if you look at dietary patterns around the world, there is a vast spread in terms of how much dietary Vitamin D different cultures consume. Any real negative effect of Vitamin D would become immediately apparent from that factor. But the reality is running in the other direction. Cultures consuming less Vitamin D are exhibiting more susceptibility to disease across the board. - George
In regards to Pentox... if I miss a dose is it okay to just skip it? I'm confused by the warnings on the bottle, which say to take the next dose ASAP -- but I beleive they are there to describe the instructions for peripheral artery disease. But screwing with the viscosity of my blood isn't something I want to do. Is it safe to miss a dose or two? I lead a very active lifestyle and am also absent-minded. It's hard to get in a pill every 12 hours!
Similarly, has anyone had a problem with alcohol while on Pentox? I had three beers last night -- it felt like I'd had seven -- and today I'm dizzy and out of sorts. I'm generally a much heavier drinker, though months out of practice, and wanted to know if drinking in general is a bad idea with the medication.
I'd ask my uro, but he didn't know about pentox - he just followed along with my spewing of knowledge at him in a little medical book, presumably to confirm that this wasn't too heavy-duty of a prescription, and wrote it for me. I don't think he'd be able to tell me one thing about it's effects short of what he read. Sad, but at least I got it...
I certainly wouldn't be worried about missing a dose of Pentox IF all I were taking it for were Peyronie's. Everytime someone takes a dose of aspirin they are "thinning" there blood momentarily. These things are really only a concern for those with life threatening conditions which involve either inappropriate clotting or bleeding to death. But they put the warning on the labels just to be on the safe side. As for alcohol, I would be very careful with mixing it with any kind of prescription medication (or with Peyronie's for that matter), but the Pentox instructions should include warnings if its an issue. - George
Not to preach, but drinking is unhealthy unless done in moderation (exception: addictive persons who should not drink at all). Moderation means 1-2 absolute alcohol equivalents per day at the most. An "absolute alcohol equivalents" translates into one regular glass of wine, one beer, or one shot (about 45 ml) of spirits. More is likely to affect your health negatively, and when taking medications, likely to affect the metabolism of the meds. Additionally ethanol is caloric and that means weight gain, or a loss of nutrients that are better for you.
Tim
hi everyone i am new with and not positive i have peyronie's disease. i will explain my symptoms and hopefully someone here will have some answers. first i will start out by saying i am only 17. i have been drastically curving left. i would say my erection causes a 50% curv to the left. it also curvs downwards. i am use to a erection that is straight and that points straight upward. now its left and goes straight out instead of up so i would say its also curving downward. even while flacid my erection seems twisted and curvs left. it seems as if its stuck when i try putting back in the middle while laying down it just goes right back. i have also noticed a large irregular vein form on the right side going up from the base. its abnormall huge and bulging out pressing up against the skin. i think this formed from the abnormal curvature. while gaining a erection while laying down the vein curls and bends which causes some pain. this vein seems to be the main vein that gives blood to my penis and its growing larger and bulging worse. i am wondering if anyone with peyronie's disease has had this issue? my erections have been extremley weak at the base and just overall. i gained a straighter erection by flexing the muscle in my penis but when i stopped flexing it just went right back. i can only gain a full erection when i come or flex the muscle and even the full erection is curving drastically downward and left. so while masterbating i had about 50% curvature maybe even 60% but when i climaxed for a brief second i gained a little straighter harder erection but still very abnormal. i have also noticed a lot of pre mature ejacualation. pretty much right when i gain a full erection i need to come. if it help at all i am 100% positive i got this from extreme over masterbation. do you believe in time the trauma i brought to my penis will heal? i am only 17 and want to try to do inhome reamedys to help myself. so what kind of vitamins or anytime or oral medication that i could buy at say a ralphs that can help me. i already have synthetic vitamin e but thats about it. please let me know of anything i could buy at a vitamin store that could help. any special exercises or anything! just incase this might have anything to due with my condition i have been a heavy teen smoker of marijuana and ciggarrettes. i also would like to say that i have been about 6 and a half inches since i was 13 but never grew from there but now i feel i am only 5 and half inches cant measure it but i can tell by looking at it. will i regain that 1 inch if i heal this curvature? does anyone know of a specialist in urology in Los Angeles?
haha sorry about a lot of that not making sence just bear with me :-\
Despise, Let me make it easy for you,
1) Lay off the marijuana and tobacco if you haven't already done so. Now is a good time to quit for good and do your health a favor all the way around.
2) Make an appointment to see your primary physician or a general practice doctor of your choice. You will need him (or her) to refer you to a urologist. This doctor may also be able to help you to deal with any addictions you may have related to the above.
3) Once you are referred to a urologist, the urologist should be able to diagnose you as to whether or not you have Peyronie's. IF he finds that you have Peyronie's OR is unable to explain your condition, ASK this urologist to refer you to Dr. Tom Lue at UCSF Medical Center in San Francisco. San Francisco is an easy commute by air from LA and Dr. Lue is one of the world's top Peyronie's specialists. It will be worth your time and money to see the best and he will likely provide you with a prescription for Pentoxifylline which is currently the number one prescription treatment for Peyronie's.
4) At the same time as you are doing 1 thru 3, you can take things like Acetyl L Carnitine 2g per day, full spec Vitamin E 400-800mg per day (the synthetic stuff is useless), and Vitamin D3 (start with 2,000IU per day). There are other things you can add to this later, if you scroll back over this thread and read carefully, you will find a lot of useful info. You should also read the VED thread carefully. BUT it is very important that you start with a medical diagnosis so that you know exactly what it is you are dealing with. I really wouldn't worry a whole lot about the masturbation issue. Obviously you shouldn't be doing stuff that causes trauma to your penis or any other part of your body for that matter, but typical generic masturbation does not cause or exacerbate Peyronie's. - George
Can anyone give me a link to a good and affordable full-spec Vitamin E supplement? I just can't bring myself to spend $60 for 60 again at my local natural pharmacy...
A number of online sites have Full Spec E at reasonable prices. iherb.com and puritanspride.com come to mind, others, I'm sure could also make recommendations. - George
Can anyone tell me if Forskolin can have a negative effect on my overall health. I'm thinking about taking it, and I also was wondering if it will hinder my Peyronies Disease recovery progress. Also, someone mentioned that Pentox negatively affects elastin. Can anyone explain that to me?
bodoo2u, I personally would not take Forskolin unless I really needed to. But I can tell you that Forskolin is really good at what it does, which is mainly to relax smooth muscle tissues. I have taken it before for bladder infections and would take it again. It is also good for things like Irritable Bowel Syndrome. But I would not take it long term if I didn't have to. It supposedly may raise the risk of Prostate Cancer to some degree. For sure, anyone who has or has had Prostate Cancer should NOT take it. It is a drug, just like the prescription kind. It is very useful, but does need to be used responsibly. I suspect it does not provide much, if any, benefit in terms of Peyronie's.
As for Pentox, here again, there are benefits and drawbacks, but, when it comes to Peyronie's, I am convinced that the benefits of Pentox far exceed the drawbacks. Whatever Elastin you *might* lose due to Pentox likely will not be noticeable. And what good is the Elastin anyway if it is compromised by Plaque? I just really wouldn't worry about these minor details. You have to look at the big picture, and when you look at the big picture, Pentoxifylline is the best prescription drug out there for Peyronie's. It doesn't come free, but no other drug comes close in terms of risk benefit issues. Whatever damage it might do in terms of Elastin is far outweighed by the damage it is likely to prevent in terms of inflammation. Remember, inflammation destroys Elastin as well and Pentox relieves inflammation. The end result could easily be a net gain in terms of Elastin. These things end up being incredibly complex when you include all the angles. - George
Thanks for the info, George. I'll abandon my plans to take forskolin and stick with the Pentox for as long as it lasts.
Quote
Exclaiming the virtues of vitamin D (http://www.edmontonsun.com/Lifestyle/Health/2008/10/18/7128031-sun.html)
A reader remarked, "I remember your column on vitamin D of several years ago. The one that said you could stand out naked all day in winter and never benefit from the sun. What is your current thinking about this vitamin?"
Others ask, "how much vitamin should I take?" Here are the facts you should know about the sunshine vitamin.
I had an appt with Dr. Romeo Mariano, a noted male hormone doctor in Monterey, CA last week. Besides being an Endocrinologist, he's also a Psychiatrist. I was seeing him primarily because of testosterone issues, but after exstensive blood work on me and a 2 hour consultation, he feels my problem is more than simple testosterone (actually, he said my T was "not that bad" at 460, but that my Eastradiol (E2) was low at 10. He said this alone could cause libido, ED problems). He said the problem is my system is "all over the place" in terms of hormones, metabolism, etc.
Nevertheless, he feels lack of quality sleep and poor nutrition are the primary problems I have, and says that is causing my Endocrines, Thyroid, and all hormones to "sputter" - this is what he wants to address. He says my metabolism is screwed up and I'm producing norepinephrine while I'm asleep that's screwing my sleep up. He's prescribed three drugs, plus 9 different supplements/vitamins to address nutritional deficiencies. I was very impressed with his thoroughness and his manner.
One of the drugs he prescribed has me spooked though. Cabergoline. It's a dopamine agonist, originally used for Parkinson's patients. It's also noted to increase libido, but he wants me to take it for better sleep, too. While he's a brilliant guy, he was not very familiar with Peyronie's. When I read about Cabergoline, one of the problems it can cause is fibrosis in the heart, liver, eyes, etc. The words FIBROSIS and Peyronie's do not go together in my mind - it makes me very hesitant to take anything that can cause fibrosis anywhere.
Tim, do you know anything about this drug and would you be scared of it as a Peyronies Disease sufferer?
Nemo
Hi Nemo,
Just curious, what were the 3 drugs and 9 herbs/supplements he prescribed? Did he think sleep and better eating can fix your problems?
I have an appointment with my urologist on Wednesday afternoon. I'm hoping to get prescriptions for Pentox and Trazodone based on what people here have said. Does anyone know of any studies or web-sites I could print and take to show him, or should I just print out quotes from people on this forum supporting their use for Peyronie's?
He will discount forum comments as he should. You need data from a respected urologist or clinical trial. It seems that data exists somewhere on our site (from Dr Lue) but I am not sure. If I find it I will post it but I suggest you start hunting or your visit my be largely a lost opportunity.
Hawk
I agree with Hawk regarding any forum comments. I would not even open my mouth to any doctor regarding "forum comments" or anything off of the Internet EXCEPT information from bona fide medical schools and research centers. The very best thing to have in hand would be a copy of the paper from Dr. Lue. - George
Another thing Dr. Mariano wants me to do (see my message below) is take 10,000 iu of Vitamin D per day - he says I'm low on D. I've read something on the internet about too much D causing calcium problems and calcification of soft tissue. Again, this sets off a warning light for me as a Peyronies Disease sufferer. George, any thoughts?
Nemo
Thank you Hawk and George. I put "Dr Lue Pentox" into the search box and found a lot of good info that included a post by George with a link to an article on medicalnewstoday.com that should work perfectly.
Just heard back from Dr. Mariano's office ... said NOT to take the cabergoline after all, due to the Peyronies Disease issue I raised about "fibrosis." I also asked her to ask the Dr. about Vit D and hypercalcemia. I'm glad to know the Dr. is not one of these "do as I say" types and actually looked into this for me.
Nemo
Quote from: Nemo on October 21, 2008, 03:40:02 PM
Another thing Dr. Mariano wants me to do (see my message below) is take 10,000 iu of Vitamin D per day - he says I'm low on D. I've read something on the internet about too much D causing calcium problems and calcification of soft tissue. Again, this sets off a warning light for me as a Peyronies Disease sufferer. George, any thoughts?
Nemo
Nemo, I absolutely agree with Dr. Mariano on the Vitamin D. The thing with Vitamin D is that lots of it causes calcium to be absorbed super efficiently by the body and *can* cause levels of calcium in the blood to climb too high. This is why doctors typically monitor blood calcium levels every few months in the case of people taking large amounts of Vitamin D. But 10,000 IU or less daily rarely causes a problem. HOWEVER, I would not take this amount of Vitamin D and also take stuff like calcium supplements UNLESS prescribed by your doctor. Additionally, I would take some Vitamin K along with the Vitamin D. The Vitamin K will prevent calcification of soft tissues by driving any excess calcium into the bone where it belongs. Many doctors are beginning to talk about Vitamin D as basically "the mother of all hormones" in that deficiency of Vitamin D seems to be at the root of faulty hormone and glandular dysfunction in the body. In my own case, my Peyronie's is definitely on the retreat since I have upped my Vitamin D intake to 10,000 IU a few weeks ago. I am also still doing the UV thing to generate Vitamin D via light, so I am probably getting over 15,000 IU a day total. The result on the Peyronie's is only good stuff so far. I am EXTREMELY pleased with the Vitamin D at this point and wish I had started taking it long ago. But only in the last few months have these secrets about Vitamin D been discovered. - George
george 999.
you said: 'In my own case, my Peyronie's is definitely on the retreat since I have upped my Vitamin D intake to 10,000 IU a few weeks ago.'
can you please let me know what has actually improved - also I am on D3 which is 1000iu per day - should I up this amount or is there a generic vit D thats got 1 capsule that 10000iu - Im taking so many differnt supps that my desk at work is like the walgrens counter....
Thanks, George, I always appreciate your expertise on matters supplement!
nemo
Quote from: Iceman on October 21, 2008, 11:19:26 PM
george 999.
you said: 'In my own case, my Peyronie's is definitely on the retreat since I have upped my Vitamin D intake to 10,000 IU a few weeks ago.'
can you please let me know what has actually improved - also I am on D3 which is 1000iu per day - should I up this amount or is there a generic vit D thats got 1 capsule that 10000iu - Im taking so many differnt supps that my desk at work is like the walgrens counter....
Iceman, What I have noticed is 1) less tendency to experience pain in the "plaques", in fact complete freedom from any "plaque" pain for the whole period and 2) the "plaques" have become significantly smaller and "flatter". There has been no perceptible change in the bend yet, and I realize that is the gold standard around here. However, I believe that anything that knocks down inflammation is really important in the long run and it is these anti-inflammation qualities that I really value in Vitamin D. I believe that will eventually pay off for us in terms of Peyronie's.
Around here, I am seeing Vitamin D3 available in up to 5,000 IU capsules. I have no idea what might be available in your area. I am taking 10,000 IU with the collaboration of my physician, I really recommend you get your doctor on board just to make sure all the bases are covered and that you are doing it as safely as possible if you are going to take large dosages. I am taking four 2,000 IU's and two 1,000 IU's daily, breaking them up at meal times and before bed. I just saw a study go by where they successfully tested large dosages on a monthly basis, for example 100,000 IU - 250,000 IU once per month, and found that safe, so I think a lot more options are going to emerge in the future. There is just a lot of investigation going on right now in terms of Vitamin D since researchers are finding that it is beneficial for treating and preventing such a wide range of diseases. Its truly a revolution in medicine. My wife just encountered a cancer patient who had just been treated at a major medical center and was telling her about Vitamin D. She responded that they had already tested her Vitamin D levels and had put her on a Vitamin D regimen in order to help attempt to prevent a return of the cancer. Medical practitioners are really scrambling on all the new knowledge about Vitamin D right now. - George
Recently I "attended" a "webinar" on Peyronies Disease, presented by two experts. Having visited a urologist who iterated standard info easily found on the web--"But I know all this," I interupted, when he got to the part about surgery--it was by comparison to this doctor's recital a very educational, if discomfitting 90 minutes. The presenters, John Mulhall and ___Levine (forget his first name) more or less said this: Verapamil injected is the only stuff that has been shown to be effective in reducing bend, and then only partly. Vitamin E can be dangerous, beyond what is daily-needed, and indeed some studies have linked hi ingestion of vitamin E to an increase in potential stroke/heart attack, when all along it's been touted as an aid in preventing such.
As for huge doses of vitamin D: don't. It's hard on the liver and kidneys. As is all excess ingestions of chemicals (sometimes known as "herbal extracts). D can be a, uh, precipitating factor in developing kidney stones.
As for pain reduction representing "progress", it was mentioned in the webinar that a disappearance of erection pain is within the natural course of Peyronies, and should not be considered a reversal of the condition. (Indeed, I am in this phase, and my angle is ever pushing 45).
The frantic, desperate attempts--me too, alas-- to smooth things out, so to speak, will do more harm than good to one's overall health. The burden placed on the liver and kidneys to remove all this unnecessary chemical detritus in the blood is beyond calculation. Aubrey Grey's book, Ending Aging, which grimly describes many of the chemical realities, such as "glycation", mentioned on the forum more than once by George, says that huge amounts of these zealously touted antioxidants can result in an acceleration, not a reversal, of aging factors, such as "cross-linking", etc. This is because, while anti-oxidants do neutralize some "free radicals", there are toxic reactions when the body tries, and fails, to remove the results of these "anti-oxidant" reactions, which ironically end up doing just what their target "free radicals" were doing in the first place.
The single most powerful thing you can do for your overall health--and it will have little or no effect on Peryronies-- is to eliminate ingesting toxins PERIOD. It goes without saying, or should, that alcohol and tobacco and drugs are first on the list, but ANY excess per se, excess food, excess supplements, and even water, will be treated by the body as just so much toxin. The body--which has already "dealt with you Peyronies, in its own way-- simply does not "know" what to do with all this "nutriceutical" junk; and let me say an old saying: quantity changes quality. Thus, the boring and humbling truth of the "Middle Way" ...
I urge any of you mad pill-poppers (I'm one, tho "in recovery") (and may you live long and prosper) to reconsider the value of bathing your blood, thence cells, in the random ingestion of megadoses of whatever you stumble on in your sad search to recover your pristine penis. Peyronies--it's not a "disease" the doctors in the webinar pointed out, but a "condition". Perhaps you are thinking, "Yeah, well I'm gonna FIGHT it, fight it with my arsenal of pills!" Good luck.
Ironman - are you saying to stop taking any supps such as ALC and arginine etc?????
Ironman, I suggest you reference some research studies to back up your wild claims. Doctors have been prescribing high dose Vitamin E for years for Peyronie's. As for things like ALC, there are actual research studies showing high amounts of them to be helpful. Your claims about Vitamin D are equally ridiculous. There are numerous studies showing Vitamin D to be safe in large amounts when done under medical supervision. Here is one: Megadose of vitamin D once a month safe and effective (http://www.smartbrief.com/news/fmi_pharma/storyDetails.jsp?issueid=AEFDD279-CC73-4B2D-AD80-78C6213DEFE5©id=874CB0E7-DA49-4988-9B17-B07A2F32AEF9). It is easy to make unsubstantiated claims about nutrients being "toxins", but without any authoritative support they mean nothing. - George
George999 - Ive tripled my intake of vit D3 ( 3000iu in total) and have had ZERO pain for the past 36 hours -
i will keep you posted.
Ironman - i'll admit that sometimes i've felt like i did best when i was too lazy to bother with my pills for a few days. but some of what you are saying i don't think is even plausible. Too much water in the body can be a toxin? i dont think so. not unless you are drowning.
Quote from: Iceman on October 23, 2008, 01:41:06 AM
George999 - Ive tripled my intake of vit D3 ( 3000iu in total) and have had ZERO pain for the past 36 hours -
i will keep you posted.
Great news. Hopefully this will continue into the territory of weeks and months. Maybe I'm being a little too optimistic, but if it turns out to be the case George could be right about how useful this could be for us.
We need to understand that there is a global epidemic of Vitamin D deficiency. Some researchers are even referring to it as a "pandemic". And this problem results in health issues that are simply all over the map. There is absolutely no doubt in my mind that there is some link to the growing problem of Peyronie's. And if you start taking Vitamin D now, even in large doses, it will take months to realize its full effects since it is rapidly absorbed by body fat and blood levels rise gradually as fat becomes more saturated. But the likelihood that it can provide long term benefit is very large in my estimation. - George
References:
Quote from: The Journal of Nutrition
The Vitamin D Epidemic and its Health Consequences (http://jn.nutrition.org/cgi/content/full/135/11/2739S)
Vitamin D deficiency is now recognized as an epidemic in the United States. The major source of vitamin D for both children and adults is from sensible sun exposure. In the absence of sun exposure 1000 IU of cholecalciferol is required daily for both children and adults.
Quote from: WebMD
Low Level of Vitamin D Ups Death Risk
Study Shows Increased Risk of Death From Any Cause (http://www.webmd.com/heart-disease/news/20080811/low-level-of-vitamin-d-ups-death-risk)
"Our results make it much more clear that all men and women concerned about their overall health should more closely monitor their blood levels of vitamin D and make sure they have enough," says researcher Erin Michos, MD, in a news release. Michos is an assistant professor at the Johns Hopkins University School of Medicine and its Heart and Vascular Institute.
another 18 hours and ZERO PAIN - could it be the extra VIT D3 I am taking?????
will keep you posted over the weekend
@Iceman: You still do VED excercises?
germike - yes I do 20mins per night....
George,
What would you attribute such a epidemic to? It seems strange that the body requires such an "unnatural" amount of vitamin D. In Fact it seems that by definition most do have a natural intake. Many things have vitamin D added that did not in years past.
Went back to my uro, Dr. Carson, because of increasing pain and inability to function normally (nonsexually) without feeling a great deal of pain... Especially when walking. I was not even considering attempting sexual activity due to an erection of any kind causing me a lot of pain...and even worse pain when I have an erection and it is touching something else (my pants or the side of my girlfriend through my pants when I hug her.
He was very attentive and stayed with me for 20-25 minutes. He is going to try to move my doppler ultrasound date sooner than the December 29th date it is for right now as he wants to see exactly what is going on in there. For the pain, I was told to stay on the Pentox and Motrin that I was taking, but to add Lyrica to that as well, 50mg, three times a day. I have just taken my second dose now but after doing a google search am a little worried about that medication. I have not noticed any adverse set effects yet though... Anyone ever taken this or heard of anyone taking this medication? Obviously it will not be doing anything to help correct my possible/probable Peyronie's disease or whatever else is going on down there, but the pain right now is not something that I am able to deal with so hopefully this will have a positive effect with that. Thoughts?
Quote from: Hawk on October 24, 2008, 12:40:10 AM
George,
What would you attribute such a epidemic to? It seems strange that the body requires such an "unnatural" amount of vitamin D. In Fact it seems that by definition most do have a natural intake. Many things have vitamin D added that did not in years past.
Hawk, I think that in order to understand the Vitamin D problem, one has to consider a number of factors.
1) Sun exposure generates huge amounts of Vitamin D. What is a "natural" level of sun exposure? People simply are not getting as much sun as they used to before fears of melanoma set in.
2) People as a whole are not eating as much fish as they used to. Fish are not a part of the typical "western" diet. What is a "natural" level of fish consumption?
3) More people in this generation were formula fed as opposed to being breast fed as infants. Emerging studies are showing that breast fed babies require less Vitamin D as adults. Which is "natural"? Breast feeding or bottle feeding?
4) Due to diet and lifestyle issues, people have higher levels of systemic inflammation. Inflammation rapidly depletes Vitamin D levels in the body. Is the level of inflammation people are subject to these days from things like modern day stress levels "natural"?
These are the major factors identified so far, more will probably be uncovered as the research continues. All of this amounts to a confluence of powerful factors that together are resulting in severe deficiencies. A number of studies have been done confirming that a large percentage of the population is significantly deficient and that deficiency is now being solidly linked to one disease after another. These studies have actually been going on for some time, but there has been a cadre of Vitamin D opponents in high places who have been fighting to the end to suppress this investigation. What is now happening is that they are finally capitulating in light of the evidence that is finally becoming overwhelming. For example, the inflammation factor demonstrating that environmental factors can significantly and rapidly deplete Vitamin D levels. This was not understood before and the argument was that the body was somehow "regulating" Vitamin D and that people should not try to interfere with that by taking supplements. Now, studies are showing that Vitamin D depletion is not only not a natural process, but also that Vitamin D replacement strategies can have extremely positive effects on health. Top experts are now advising that ALL people should be ROUTINELY tested for Vitamin D levels. The problem is that the tests are currently expensive and insurers are still fighting this strategy. But I suspect that as the evidence continues to accumulate we will eventually see Vitamin D testing become a routine part of the annual physical. - George
Breaking Vitamin D news this morning: Vitamin D May Reduce Prostate Cancer Metastasis by Several Mechanisms Including Blocking Stat3 (http://ajp.amjpathol.org/cgi/content/abstract/173/5/1589)
I was just doing some research on D3 on the internet and one source recommended that if you were taking large amounts of D3 (10.000 IU), that you should have your serum calcium level checked once a month. I realize that this should be checked, but do you think it is necessary to have monthly exams?
Fred
hi do you guys know of any medication i could buy at a local vitamin store or something that helps bring down the swelling of penile tissue? my uretha and tissue are all hard. im not positive if i have peyronie's disease because i have yet gone to a doctor. but i need some kind of help! would anti inflammatory supplements help? please what can i take to help my penile trauma?
despise:
You must remember that the members of this forum, with the exception of a few, are not doctors. Those that are doctors will tell the same thing that I am about to tell you.
You should seek the help of a qualified urologist for the problems you are experiencing. We on the forum cannot and most will not advise you other wise. You may have Peyronies Disease and again, you may not. So, you need to make an appointment either with a urologist or your primary health care doctor.
Only qualified medical personnel/doctors can make a diagnosis for you. I know that you want to hear other words, but this is based on my experience with Peyronies Disease, ED and other men's health issues.
Please feel free to ask any and all questions you may have though because members of this forum may be able to help with them.
Old Man
Quote from: George999 on October 24, 2008, 11:05:06 AM
Breaking Vitamin D news this morning: Vitamin D May Reduce Prostate Cancer Metastasis by Several Mechanisms Including Blocking Stat3 (http://ajp.amjpathol.org/cgi/content/abstract/173/5/1589)
George,
I cannot see anything but the sketchy title of this. Vitamin D has been reported to effect the progression of prostate cancer for years. A pretty thorough follow-up study (prompted by earlier positive studies) concluded there is a narrow window. A high or low serum level of vitamin D seems to increase incidence and spread of PCa while a middle range seemed to inhibit the PCa.
Hawk, Every study I have seen so far seems to indicate a net reduction in Prostate Cancer risk from Vitamin D. Do you have a link to the study showing a potential increase in risk? That would be very interesting. - George
George I do have the link but it will take 10 minutes i don't have this time of night. I will post it tomorrow or at first chance.
Has anyone besides me come down with Peyronie's after taking Metoprolol (Beta Blocker)? I had no symtoms prior to the medication. I then had a bypass and left the hospital with full-blown Peyronies.
Gerald - ghinin@verizon.net
gerald:
I have been taking Toprol and later Metoprolol the generic for Toprol for over 4 years now. Have not had any indications of Peyronies Disease symptoms occur during that period of time. These meds were prescribed after bypass surgery.
As far as I know, there are no known Peyronies Disease symptoms indicated with taking these meds. Maybe George999 can pick up on this and help us out with an answer.
Old Man
Gerald, I was on Metoprolol at the time I developed Peyronie's and I am absolutely convinced it was one factor among many that resulted in my ending up with Peyronie's. I believe that there is no one specific cause of Peyronie's. It is the result of a conjunction of multiple factors that result in an inflammation syndrome. So, yes, Metoprolol is suspect, in fact Peyronie's is actually documented as a possible adverse "side effect". But Metoprolol alone is not likely to cause Peyronie's. There are a vast number of men taking Metoprolol who have not contracted Peyronie's. Unfortunately, Metoprolol is one of the few meds available and in some cases the only med for certain medical conditions. It is often prescribed for hypertension though and in that case, I consider it a very poor choice for someone with Peyronie's. The best choice in my opinion is Cozaar since Cozaar actually has a TGF-beta blocking action. - George
Hawk, I don't know if this is the study you are referring to or not, but it is the ONLY one I have found so far indicating an increased risk of Prostate Cancer: High doses of vitamin D may not prevent prostate cancer - study (http://foodconsumer.org/7777/8888/C_ancer_31/102809392008_High_doses_of_vitamin_D_may_not_prevent_prostate_cancer_-_study.shtml)
Note that although the study reports that "taking high doses of vitamin D may not help protect against prostate cancer. Even worse, it could increase the risk for aggressive prostate cancer.", it also states "The researchers found that there was no statistically significant association between vitamin D levels and the risk of prostate cancer. Surprisingly, however, people with high vitamin D levels were found at a higher risk for aggressive prostate cancer although the association was not statistically significant." - George
George,
That is not the study. I believe it was a Swedish study that listed the specific serum levels of vitimin D associated with an increased risk of PCa. Both a low and a high range of vitamin D showed a statistically significant elevated risk.
I had a family member hospitalized and have not had time to dig it out but I will ASAP.
Hi fellas
I've just posted my story in the history section so I won't ramble too much here.
I'm interested in taking ALC, but I'm currently taking medication for hypothyroidism (sluggish thyroid) and apparently the two meds don't mix. Has anyone here come up against the same issue? I've just started taking L-Arginine instead. Any info would be appreciated - I'll be bringing it up with my uro in 10 days or so.
Thanks in advance for any information you can throw my way.
Thanks too for all the regular posters - this place has made me relax a little about this unfortunate disease.
i have posted on this forum before and I know no one else has reeally experienced these problems but has any one had side effects with popping too many of thses supplements. I am on vitamin e, vitamin C, quercetin, msm, ALC, and some nattokinase. I only use pentox when i really need to. point being it is aging my skin everywhere. I am 21 but i can assure u its not from food or stress or anything. I have had much wrinkling over my hands and face, and scars, on my face as well. ps i dont have acne either. it is almost as if I am aging at a super fast rate.
As others have said, i believe the excess of supplements have a pro oxidant affect instead of an anti oxidant efect when taking at high dosages. I take two natural vitamin E equivalent to 800 IU's, and 500mg of everything else, which is one pill. I have toyed on and off with the medications and clearly i get better with my skin when this happens, but blood flow to my member is not as well as without the aid of these supplements.
Just wanted to hear other peoples opinions and thoughts
Other than getting too much vitamin E, I have no clue what might be going on.
Tim
I think what makes this REALLY hard is that everyone reacts to supplements (and medications) differently. What sflo is experiencing though is really bizarre. If it were happening to me I think I would want a really comprehensive blood test and perhaps he has already had this done and nothing has shown up. But everything he has indicated that he is taking seems really quite benign to me and it is really strange he is getting this reaction. I especially don't see any pharmacological connection between Pentoxifylline and skin issues. I find this really baffling. - George
yes i have complained to george numerous times and he as well as everyone else has been so helpful thus far. I am trying to just take pentox and see what happens with that. I am actually running to the Er tomorow because I think I might have other issues as well and need to get looked at asap. I will keep you guys posted. Wishing everyone the best.
sflo
Anyone - I just got back from the local doctor and I got diagnosed with bursitis of the elbow - its a real nasty inflammation and he thinks that its all connected with the Peyronies Disease - inflammation is rampant in my body and i have since been prescribed Mobic and Celebrex ( they are heavy prescription anti inflammatories) - do you think that there is some correlation between the 2 and will the taking of Mobic etc conflict with pentox....
Iceman, I know that you are taking D3, but I strongly encourage you to try to get plenty of full spectrum light as well. Since we are in winter here where I am, I am currently using an unfiltered 500W quartz halogen lamp. These put out plenty of light all the way from IR to UVB. They are also fairly inexpensive unlike the "tanning" system lamps. This has done wonders for me. I stopped for a while because I thought I was getting plenty of D3 orally. But the inflammation in my legs increased and so I have resumed using the light every morning. I do 20 minutes on my front side and 20 minutes on my back side at about six feet distance. I get a lot of relief from inflammation this way. I am really fascinated by this approach. We know that full spec light generates D3 in the skin. It also breaks down cholesterol and things like bilirubin. It is not a stretch to imagine that it might affect things like biorhythm in a healthy way. What other things might it do? I suspect that I am not the only one around who does not get enough gentle and healthily limited sunlight. In any case, I am liking the results and contemplating attaching a fixture to the ceiling to make this whole thing easier. - George
NOTE: I have stopped using the halogen approach due to issues with possibly dangerous levels of UVC. I am now using a more expensive mercury vapor lamp from Sperti that is designed to put out healthy levels of UVB while filtering out UVC. - George
Goerge,
I guess I could Google this but I will ask instead. Are you sure halogen puts out UVA and UVB spectrum waves. This is news to me. I have read a little about lighting and bought UVA/UVB lights for a terrarium.
Sflo,
I question everything . It is my nature. I often make the point with treatments that appear to work. Just because "a" precedes "b" does not mean "a" caused "b". I make the same point here.
You took supplements and noticed the premature aging issues. There may well be NO connection. If we are going to generate associations I would prefer to say, "Peyronies Disease struck (a) " and aging struck "b". since aging is a skin collagen issue and Peyronies Disease is likewise a collagen issue I think it is more likely that the condition that caused the one actually has persisted and is causing the other.
Hawk, This is one of the dirty little secrets of lighting. The lighting industry does not like to advertise or discuss the UV output of halogen lighting because a) they don't want to scare people away from using it for more mundane purposes, and b) they prefer to sell specialized fluorescent type UV lighting with much higher profit margins. But there is at least one quartz halogen based tanning lamp produced, although it costs hundreds of dollars. I knew about the UV output of quartz halogen lighting because nearly forty years ago when I was operating a printing shop (back when that still involved negatives and plates and all that) I could not afford the expensive equipment to expose plates which require high amounts of UV light. Then I discovered that cheap high powered halogen lights worked just as well. The manufacturers normally installed a face glass in the fixtures to "prevent" burns and protect the bulb. But in reality that glass is designed as a UV filter to remove the lamp's UV output. I just removed the glass cover and wah-lah, it worked better than the commercial fluorescent lamps designed for that purpose and dirt cheap as well. Even now there is very little information on this on the Internet. But if you begin to look at the academic sites, you find bits and pieces. Here is an example from a Kansas State University page (http://www.phys.ksu.edu/gene/a3.html):
Quote from: Kansas State University
Artificial Sources of Ultraviolet Radiation
Artificial lights that emit ultraviolet radiation can be used for biological experiments. The two general types are incandescent lights and fluorescent lights. With appropriate precautions, you can use artificial light as a UV source in your experiments.
Incandescent Lights
When the tungsten wire filament of an ordinary light bulb is heated by an electric current it gets hot enough to emit light, and some of that light will be ultraviolet. At higher temperatures, more of the light is emitted as ultraviolet. A type of bulb known as a quartz-halogen lamp has a tungsten filament inside a quartz tube filled with an inert halogen gas. Quartz-halogen lamps can be heated to higher temperatures than ordinary light bulbs, and give off an intense light containing a considerable amount of UV-A and UV-B, and even a little UV-C. Such light bulbs are commonly used for automobile headlights, slide and overhead projectors, and outdoor security lights. Figure 2 shows the energy spectrum of a 300 watt quartz-halogen lamp that is available in hardware and discount stores for less than $20.
Normally, quartz-halogen lights are operated in a glass enclosure, which absorbs the damaging UV photons. If one removes their protective glass cover, however, they become a source of artificial sunlight. The spectrum of light they emit is quite similar to that emitted by the sun after it has been filtered through the atmospheric ozone. With its glass cover open, the lamp whose spectrum is illustrated in Figure 2 can be used as a substitute for sunlight. With the cover closed, it can be used as a source of visible light for photoreactivation.
Obviously when the protective glass cover is removed, a quartz-halogen lamp is hazardous, since it emits as much damaging UV energy as bright sunlight, so those working around it must protect their eyes and skin from the direct radiation.
You can also find interesting info on some industrial equipment sites:
Quote from: Industrial Products Finder
Gilways clear quartz halogen lamps provide full spectrum radiation beginning in the ultraviolet, continuing through the visible, and extending to the infrared. This broad-band emission is essential in spectro-photometry equipment design.
Hope that this is helpful. - George
NOTE: It turns out that there is a problem with these quartz halogen lamps in that they put out some UVC spectrum light which can be dangerous to health. Since discovering that, I have switched to a considerably more expensive mercury vapor lamp from Sperti that is specially designed for the purpose of providing healthy levels of UVC. I no longer recommend the quartz halogen approach. - George
george999:
Since you are the author of the post, you can remove it yourself. Just click on the remove icon in the post when you open it to read it.
Old Man
Old Man, I used to see the remove icon, but it disappeared a long time ago and I am not seeing any way to remove the post. - George
George,
Is the Vit D+UV therapy helping with erection quality also?
Actually, I was responding to Iceman's comment about generalized inflammation. I have pain and inflammation in my legs and the D/UV thing has helped me immensely with that. At this point, I can say it has also given me extra energy and has seemingly extended the frequency and duration of my night time erections. I say seemingly only because there is no way to be certain that they are what is causing the effect, but the fact of the better night time erections is not really in question. Its happening. As for the deformity, no improvement yet on that level. - George
Quote from: young25 on November 04, 2008, 07:13:38 PM
George,
Is the Vit D+UV therapy helping with erection quality also?
Hi everyone ..i'm pjchap i'm 25 i havent been on in awhile and i havent done much about this condition at all...mainly because i was dissapointed by the last urologist i seen, he didn't help he just basically told me to "deal with it" which i've been trying so hard to do.! anyways 2 weeks ago i went to this homeopath/acupuncturist/odd excentric man who apparently is a bit gifted in seeing where people are deficient among other things in a nearby town where i live....... he told me i can be 100% cured , i suffer from about 4 bad colds a year and this man told me without him knowing that, that i had a cold when i was 17 that i never got over... he then stuck the last needle in my arm where a red circle appeared which he told me was the vaccine that was given to me then leaving my body!! in 2005 i had a desease GBS which mainly caused paralysis in my legs i was treated in a hospital for this and was put on a drip for 3 days after which i was completely cured 3 months later... however 3 months after that peyronies kicked in... this homeopath man i'm currently seeing said that i was never cured of GBS that they just merely moved the negative energy not treating the source just passing it on if u will thus creating peyronies... anyways i'm giving this a shot and i firmly believe it can work.. i'll keep u all posted and i hope this man is right any views on this will be appreciated..!
Quote from: EurekAlert
Lung airway cells activate vitamin D and increase immune response (http://www.eurekalert.org/pub_releases/2008-11/uoi-lac110308.php)
In addition to contributing to calcium absorption and bone health, vitamin D is increasingly recognized for its beneficial effects on the immune system. Vitamin D deficiency has been recently linked to increased risk of some infections, autoimmune diseases such as multiple sclerosis and type 1 diabetes, and some cancers.
"Vitamin D converted by the kidneys circulates in the bloodstream, but vitamin D converted by other organs appears to stay within those organs and protect them from infection," Hansdottir said. "We were able to see this happen in cells lining the trachea and main bronchi."
"Vitamin D not only increases proteins involved in bacterial killing but also can dampen inflammation," Hansdottir said. "Controlling inflammation through vitamin D is good because too much inflammation can cause problems such as sepsis and seems to contribute to autoimmune disease."
This is a really fascinating article with some real insights into the relationship between Vitamin D deficiency and inflammation / autoimmune issues. - George
Quote from: George999 on November 04, 2008, 07:02:39 PM
Old Man, I used to see the remove icon, but it disappeared a long time ago and I am not seeing any way to remove the post. - George
George,
I disabled the ability for members deleting posts. We had a sorehead that removed all his posts in the past. This has the ability to trash the flow of information in our topics and renders many exchanges unreadable.
PJChap,
What your Shaman/Healer said is based in a philosophy that is different than mine.
Normally, in such circumstances, I try to extend as much respect and tolerance for differences as possible. I certainly am not about to go up against many centuries of, say, Chinese Herbal medicine simply because I don't know much about it!
However, your post raises some red flags.
First, his comments are very generic, and hardly earth-shattering. Most people have between 4-6 colds per year. That is normal.
Second the "vaccine leaving the body" is pure bunk. This is about the same as the faith healers in the Phillipines who remove tumors from bodies with their hands leaving no wounds (chicken livers usually, carefully hidden in their hand).
If he wants your money, and he proposes therapy that will take time, then just walk away.
Why not go to a real urologist who is willing and able to treat you with medicine that works, like Pentox?
Good luck - it sounds like you might need it.
Tim
I was recently diagnosed with Peyronies Disease (3 months ago), am 28 years of age, and have yet to experience curvature or pain during erections, but read on the FAQ's that it is good to take L-Arginine (50 mg twice a day) and pentoxifylline to best reduce chances of future curvature.
My question is that I have looked all over my city (I live abroad in Sweden) and only found the following products with L-arginine.
L-Arginine Alfaketoglutarat
L-Arginine HCL
L-Arginine Asparat
Are any of these OK to take? Or do I need a different L-Arginine product? I've tried looking around and haven't found the answer yet and would very much appreciate help here.
If I do need a different product I would very much appreciate tips on where I can reliably buy this product online that may ship to Europe in case I can't find this in Sweden
Thanks a lot for the advice. Best wishes.
bluth,
Curious.... if you don't have curvature or pain, then what are your symptoms that resulted in the Peyronie's diagnosis.
Hi bluth, ordering online would be your best bet. There are companies based out of the UK that ship everywhere in Europe, that's where I would go.
homeopathy is nothing more than a powerful placebo effect which is quite a good thing.
It would be awesome if Pentox could reverse the bend. There are some posts here about Pentox doing just that, but I don't know how late it can be used before it's still effective. I do know it takes a long time to work however, but, if it does, time is no problem of course.
Quote from: pjchap on November 10, 2008, 10:27:14 PM
Quote from: Hitman on November 10, 2008, 10:22:12 PM
homeopathy is nothing more than a powerful placebo effect which is quite a good thing.
Theres alot more to it than that.... ur just conditioned thinking the way u do
there is nothing more to it. its your mind playing tricks on you. its a very powerful positive effect.
Quote from: lwillisjr on November 10, 2008, 07:00:14 PM
bluth,
Curious.... if you don't have curvature or pain, then what are your symptoms that resulted in the Peyronie's diagnosis.
I have a small bump inside my shaft. and it has perhaps grown a bit since i discovered it 3-4 months ago. My doc said i had peyronies and said I could experience curvature, shrinkage, etc.
That is why I am trying to be proactive as possible in taking the correct meds, but was wondering about exactly which L-Arginine product is necessary as I found all those others
L-Arginine Alfaketoglutarat, L-Arginine HCL, L-Arginine Hydrochoride, L-Arginine Asparat, but none simply called L-Arginine.
I'd really appreciate if someone who had knowledge of those products let me know if any of these is what I am looking for as I want to start taking these ASAP. Are any of them acceptable to take for Peyronies Disease? I'd really appreciate clarification on this issue.
Best wishes. :)
tjiena bluth - try some pentox.....get onto that asap.
cheers
I would also add vitamin E and ALC
Quote from: Iceman on November 11, 2008, 03:17:57 AM
tjiena bluth - try some pentox.....get onto that asap.
cheers
When shoud Pentox be used in someone's progression of Peyronie's disease before it becomes ineffective? I ask because I've had this thing for about 2 1/2+ years now and I think mine's been stable for awhile now. It even leans to the side while flaccid! That one man that had a calcification removed so I guess it works even into the chronic phase? (Though acute phase is probably the ideal point to start). I'm seeing my urologist again for the second time next Wednesday and he's definately going to diagnose me because he's going to look at me erect and so I want to try and talk him into giving me a prescription for Pentox and some other things. I have also heard Vitamin E in conjunction with Pentox is good. Would it be good to suggest that also? Any other suggestions would be appreciated.
Quote from: Hitman on November 11, 2008, 03:52:57 AM
I would also add vitamin E and ALC
Thanks a lot. Iceman as well. What is ALC? Is it an over the counter drug, and if so what dosage would you recommend?
ALC = acetyl l carnitine....
Hello, first post to the forum. I'm 44 and have mild Peyronie's. So far no curvature, but a few areas of hard plaques that can be painful during the day.
I've mostly tried mixed tocopherol/tocotrienols vitamin E (Jarrow familE), Jarrow tocotrienol, 1 g l-arginine, serrapeptase, nattikinase, and 5000 IU vitamin D. So far, there has been not much in the way of changes.
As an experiment, and because I'm fighting off a cold, I'd like to try 100,000 IU vitamin D for three consecutive days to see what happens. I also take vitamin k (MK-7). So far, no magic bullets, though I'm going to try heat (certainly low tech and low risk).
slowandsteady
learn4 life - can you post EXACTLY your regime and are you on pentox?? - ive had extreme pain for 9 months consistently but Im now taking 1 x MOBIC per day and this seems to have turned things completely around - interesting what you say about the Kota stuff
Important question about getting Pentox.
Based on my last week of research after being diagnosed it seems many people accept this as one of, if not the best treatments for the active stage of the disease. As I first discovered my hard nodule 3.5 months ago I am determined to get on Pentox to possibly prevent future problems.
My problem is that my urologist was very unhelpful and said there is nothing to do and no medication that helps. He also refused to see me for a fellow up when I was planning on coming armed with information about Pentox in hopes of getting a subscription... :(
Therefore I am wondering if I can buy Pentox (Trental I belive is the product) online from a trustworthy site? And preferably from a site that sends to Europe as I live in Sweden.
It really seems this product is my best bet and the earlier I get on it the better. It already seems my initial nodule has increased in size and that there is another one now next to it. Thanks for future help and it's wonderful to have this resource.
www.mexmeds4you.com TRENTAL
bluth:
My suggestion to you is that if your present URO won't give you a follow up appointment, maybe you should be getting to another one real fast. Delaying therapy of some sort will only give the Peyronies Disease time to grow and give you problems with any treatment/therapy later.
Old Man
Quote from: Old Man on November 13, 2008, 09:44:44 AM
bluth:
My suggestion to you is that if your present URO won't give you an follow appointment, maybe you should be getting to another one real fast. Delaying therapy of some sort will only give the Peyronies Disease time to grow and give you problems with any treatment/therapy later.
Old Man
That is what I am trying to do. Though right now the best alternative is one month and I have no idea if that URO will say the same thing. Then I am again in the same boat despite knowing exactly what I want... :-\
This is why it seems like it might be best to simply order Trental online since I know I want Pentox. What do you think?
bluth:
I am going to pass this question off to Geogre999 as he is the resident oral treatment person. He has much more experience in that field than most any of us on board this forum.
Old Man
bluth
The problem is that in Europe (or at least in most EU countries) urologists are not allowed to prescribe pentox, since it is not an accepted cure for peyronies or any other problem in the urogenital area...
If you have a family doctor whom you can trust, you can tell him/her your problem and that you absolutely want to try pentox. I would suggest that you show up with printouts of this forum and maybe Dr. Lue's article on pentox (I don't know where you can find it, but some other members of the forum maybe?!). If your doc is willing to help you he can prescribe Trental (pentox) for some other reason. Trental is commonly prescribed for tinnitus. The "advantage" of tinnitus is that nobody can proof that you do not have it, if you tell them you do... ;) So, you can also try to go to an ear specialist and tell him/her that you have a tinnitus and when he/she wants you to do an infusion therapy you tell that you prefer taking tablets... This is not really legal, but who cares? You don't hurt anybody and it is for your health!
I live in the EU too and I am on pentox. However, I have got the "big advantage" that I am really suffering from tinnitus... :-\
@ all
I want to clarify that in my "real life" I am NOT a criminal! ;D
BLUTH - fly to san fran and see dr lue - its worth the trip - dont delay!!!
Hi All,
I have had a severe case of peyronies for about three years now. I think it developed after an injury that occurred during intercourse. I have'nt found anything yet that has helped in my case. learning to live with this condition is unbelievably difficult. I have a very understanding spouse, but my feelings of inadaquacy are real and painful. I can't believe there is still no simple procedure for removing this plaque and restoring a healthy organ. I can't think of a more undermining condition for a man, than the eunich-like results of peyronies disease. sorry to post a depressed entry like this. Just really suffering it these days RG
USOL - have you tried pentox or ALC???
this might help...
I want to thank everyone again for all the tips, though it does seem I am out of luck buying Pentox online from Sweden...
I did succeed in setting up two visits this coming Monday to two different urologists. I was wondering what information people think I should prepare for these visits and hope to get out of them. It is likely I can't get Pentox, but is there a second best treatment for the intial stage that should be prescribed?
I am also very much considering flying out to Dr. Lue, but was wondering if I need some letter from my doc or if I can simply book a time with Lue without being referred. I want to make sure I am 100% prepared for booking a time with him and therefore wanted to check what you think my URO's should do to help with this.
Basically I just want to get ready so I get everything I can from these two visits and put myself in a better situation down the road to get whatever treatment I may need, but I am not sure what I should prepare, take with me, etc to do so.
One more thing: How should I best go about trying to convince my doc to prescribe Trental/Pentox?
Bluth, I get my trental from a Mexican pharmacy online. PM me for the website - I'll be glad to share it.
Nemo
bluth, Your best chance of finding someone to prescribe Pentox to you is to have in hand a copy of Dr. Lue's paper on Pentox and Peyronies and provide that to them to look over. As for Dr. Lue himself, he will not see you without a referral from your local urologist. So if you want to see Dr. Lue, you will need to ask one of the doc's who turns you down on Pentox if he or she would be willing to provide you with a referral to Dr. Lue. Dr. Lue wants to be absolutely sure that his patients have actually already been diagnosed with Peyronies so that he doesn't waste his time or yours. This is why he needs a referral ahead of the visit. - George
Does anyone know of any supplements to boost collagenase in vivo?
The only supplement I've found is from Jarrow (here at iHerb (http://www.iherb.com/ProductDetails.aspx?c=1&pid=257&at=0)). Collegenase is not a main ingredient however. How about collagenase precursors?
slowandsteady
bluth:
See post 2663 below for the link to the Mexican where Trental/Pentox can be purchased on line.
Old Man
Hi, bluth. There are some questionaires out there. Two links can be found at Peyronies Disease Advocates under staying informed/knowledgeable care - they are fairly simple. Another can be found at curepeyronies.net - it is from a hospital in VA and is rather extensive, but will give you an idea of what info they may ask. Not all doctors ask these questions, however - depends on the uro. Pictures also help, if you can take them.
Best of luck.
Jazz
If you guys buy from mexmeds4u, I trust you have checked it out to make sure the meds are legit? I am very leary of ordering anything like that online, maybe from a few Canadian pharmacies that my uncle uses for his meds (he lives near the border), but still haven't used them. BF has gotten a scrip here for Trental, he's only been on it for a week, so no progress yet since it takes awhile. However, if he wants to stay on it, and the uro doesn't want to prescribe it anymore, then this is a valuable link to have.
Jazz
I've gotten my Trental from mexmeds for several months and I believe it's legit stuff, in serial numbered blister packs, etc. From my research on the net, this is one indicator of legitimacy of foreign acquired meds. I have no reason to doubt its legitimacy at this point and it beats trying to convince a Uro to prescribe it.
Nemo
Jazz - Your boyfriend shouldn't need to get Trental off mexmeds unless he doesn't have insurance it's got to be more expensive there. If he doesn't have insurance, I recommend that he try to work for a company that can give good benefits--they'll come in handy if/when Xiaflex is administered as a Peyronie's treatment to the general public.
I think the Trental is legit for the reasons Nemo listed. However, it is expensive and customer service is not good. You don't even receive a confirmation email. On my third and most recent purchase I ordered two and only received one. It's on my credit card statement $69.24 from Manos Magicas. In all fairness, I didn't even try to get reimbursement, but it's only because they didn't reply to my email in the past, and I'm fairly sure I'm not getting my money back.
Quote from: Iceman on November 13, 2008, 06:06:33 PM
BLUTH - fly to san fran and see dr lue - its worth the trip - dont delay!!!
Thanks tons for the tip. I called Dr. Lue's office Friday and am considering a visit in a few weeks.
Are there any other equally skilled URO's more east coast? Dr. Levine in Chicago is supposed to be good as well if I have heard right? I live in Sweden and would prefer to make a shorter trip if possible, though I am of course wanting the best possible help.
Keep in mind I am looking for things that can help prevent my Peyronies Disease from progressing. Not sure if that makes a difference at all...
Has anyone tried high dose resveratrol?
I've had a negative experience with that. I'm in the first stage peyronie's, where I have pain from the plaques but no curvature yet. At a dose of 500 mg 99% transresveratrol, I noticed a slight inflammation of the plaques. As a trial I dosed 5 grams two days in a row, and the inflammation was more pronounced.
To follow up on two days of dosing vitamin D at 100,000 IU/day: not much has changed. It did seem to stop the cold I was coming down with, at least.
slowandsteady
slowandsteady, The problem with oral Vitamin D is that it is stored in the fat cells. Thus, they act like a sponge and the result is that blood plasma levels of Vitamin D tend to increase slowly. And it is important to use caution with large doses, since at some point when the fat cells do become saturated, they can result in excess calcium in the bloodstream which is dangerous. This can also happen with large doses in combination with calcium. I strongly recommend that no one take large doses without the counsel of their personal physician. There are studies that show large doses to be safe, but they are done by first testing serum Vitamin D levels, so that they always know where Vitamin D levels are at. The only way that one can get some immediate effects from Vitamin D are via sunlight or artificial sunlight. A couple of us are trying that now. This way the Vitamin D is generated right in the tissues and made accessible to them without being eaten up by the fat cells. - George
a few comments about Vitamin D
There's a large variation in the serum response to D supplementation. Look at Figure 1 in this paper:
http://www.ajcn.org/cgi/content/full/73/2/288?ijkey=f9ddb9019f6d535f0653411662c2ade2af6bd01a (http://www.ajcn.org/cgi/content/full/73/2/288?ijkey=f9ddb9019f6d535f0653411662c2ade2af6bd01a).
Isn't it cute how they tried to draw a line through that mess?
The average joe would need about 3000-5000 IU according to this paper:
http://www.ajcn.org/cgi/content/full/77/1/204?ijkey=eea17655411f1c79d0ddaa19219592eaf2325b84 (http://www.ajcn.org/cgi/content/full/77/1/204?ijkey=eea17655411f1c79d0ddaa19219592eaf2325b84).
William Davis, the Track Your Plaque guy, has put a lot of patients on D3 and monitored levels, and he reports that the dry form just doesn't seem to get people's levels up. I switched to gelcaps on the basis of that observation, and at 2400 IU/d, I recently tested at 46 ng/dl.
To my knowledge I don't think any studies have yet been done to validate any difference between sun produced vitamin D and oral consumption, all we know is that D3 is natural to humans and more efficient. Furthermore consuming D3 isn't an alien thing as eskimos do it in optimal amounts, and animals too. I reason if our bodies have a problem with oral consumption they would outright reject it.
Hitman, I think you should read further on the question of whether oral vitamin D has the same effect as sunlight vitamin D. There are a number of differences between the two modalities that have been described in a number of studies. Here is a news article referencing just one of those studies as an example:
Quote from: ScienceDaily
Vitamin D Deficiency Study Raises New Questions About Disease And Supplements (http://www.sciencedaily.com/releases/2008/01/080125223302.htm)
Marshall's research has demonstrated how ingested vitamin D can actually block VDR activation, the opposite effect to that of Sunshine. Instead of a positive effect on gene expression, Marshall reported that his own work, as well as the work of others, shows that quite nominal doses of ingested vitamin D can suppress the proper operation of the immune system.
I think this study alone raises real questions regarding the wisdom of relying exclusively on Vitamin D supplements. For healthy people there is likely little difference between the two. For people who already have a problem, there are a lot of questions. - George
Added note from George: I really regret I posted this link. The way Marshall interprets his data is really off base. Hitman is correct, this guy's 'research' is really off the wall in terms of where he tries to go with it. I remain convinced that Solar D is different than Dietary D. Not better or worse, just different. While the end product, D Hormone, is the same in both cases, the way it is delivered and modulated is radically different. But this was absolutely the wrong study to use in an attempt to prove my point. I apologize to all readers for my err in judgement in posting it. - George
Trevor's theory is based on a computer model and personal experience with a disease that causes D hypersensitivity. Trevor Marshall has conducted no study that shows:
a) a difference between ingested D3 and that which is made by the sun, (From all that we know, cholecalciferol is cholecalciferol, regardless if it is made in the skin or put in the mouth)
b) proof that vitamin D is detrimental to the immune system, which is curious when the body pushes cholesterol to the skin, for what we believe is a reason (in us and other animals).
Vitamin D has immunosuppressive *and* immune enhancing effects, that is it optimises the immune system to calm down where necessary (as in an allergic response) and 'fight' where necessary. These are the reports of accepted studies. Marshall thus far has a published opinion. When he has a peer-reviewed study published, then I'll give him attention.
The positive results of patients who reported progress on the Marshall Protocol study site after removing vitamin D from their diets could be explained solely by a decrease in the excessive 1,25-D causing immune suppression. We need more evidence to conclude that 25-D is immunosuppressive.
here is a debunking site:
http://stuff.mit.edu/people/london/universe.htm
Back to the Vitamin D issue
I have yet to see any in-vivo or in-vitro evidence that 25-D is a VDR antagonist. The first study below found that 25-D cannot displace 1,25-D from the VDR. The second study found that 25-D is 1% as effective as 1,25-D. And since there is so much more 25-D than 1,25-D, 25-D accounts for 1/8 of total vitamin D effect.
Am Rev Respir Dis. 1991 Jun;143(6):1376-80.
Expression of 1,25(OH)2D3 receptors on alveolar lymphocytes from patients with pulmonary granulomatous diseases.
Biyoudi-Vouenze R, Cadranel J, Valeyre D, Milleron B, Hance AJ, Soler P.
INSERM U.82, Faculté de Médecine Xavier Bichat, Departement de Pneumologie, Hôpital Tenon, Paris, France.
1,25(OH)2D3 is known to be produced at sites of granulomatous reactions. In order to characterize the cell types that are targets for this immunoregulatory hormone, we have evaluated the expression of 1,25(OH)2D3 receptors on peripheral blood T-lymphocytes and those recovered from the lung by bronchoalveolar lavage from patients with pulmonary granulomatous diseases (tuberculosis and sarcoidosis) and from normal control subjects using combined autoradiographic and immunohistochemical techniques. Lavage T-lymphocytes from patients with tuberculosis or with sarcoidosis, but not those from normal control subjects, expressed 1,25(OH)2D3 receptors as demonstrated by binding of [3H]1,25(OH)2D3, which was inhibited by the presence of excess unlabeled 1,25(OH)2D3, but not by the presence of unlabeled 25(OH)D3 (receptor-positive lymphocytes: sarcoidosis, 20 +/- 12%; tuberculosis, 31 +/- 17%). In contrast, blood lymphocytes from patients with granulomatous diseases did not express detectable 1,25(OH)2D3 receptors. The percentage of lavage T-lymphocytes expressing 1,25(OH)2D3 receptors was significantly greater for patients with tuberculosis presenting with isolated hilar adenopathy than for patients with pulmonary infiltrates and/or cavities. 1,25(OH)2D3 receptors were expressed to a greater extent on CD8+ T-lymphocytes than on CD4+ T-lymphocytes in sarcoidosis, whereas a greater proportion of CD4+ than of CD8+ T-lymphocytes from patients with tuberculosis were receptor-positive. These findings support the conclusion that the interaction of 1,25(OH)2D3 with its receptor on T-lymphocytes may play an important role in the regulation of granulomatous reactions, but because these receptors are expressed on different lymphocyte populations, the net effect of this potent immunoregulatory molecule is likely different in sarcoidosis and tuberculosis.
PMID: 1646583
J Clin Endocrinol Metab. 1997 Dec;82(12):4111-6.
Calcium absorptive effects of vitamin D and its major metabolites.
Heaney RP, Barger-Lux MJ, Dowell MS, Chen TC, Holick MF.
Creighton University, Omaha, Nebraska 68131, USA.
The absorptive response to graded doses of vitamin D3, 25(OH)D, and 1,25(OH)2D was measured in healthy adult men after treatment periods of eight, four, and two weeks, respectively. While no relationship was found between baseline absorption and serum vitamin D metabolite levels, all three vitamin D compounds significantly elevated 45Ca absorption from a 300 mg calcium load given as part of a standard test meal. 1,25(OH)2D was active even at the lowest dose (0.5 microgram/day), and the slope was such that doubling of absorption would occur at an oral dose of approximately 3 micrograms/day. 25(OH)D was also active in elevating absorption and did so without raising total 1,25(OH)2D levels. On the basis of the dose response curves for 1,25(OH)2D and 25(OH)D, the two compounds exhibited a molar ratio for physiological potency of approximately 100:1. The absorptive effect of vitamin D3 was seen only at the highest dose level (1250 micrograms, or 50,000 IU/day) and was apparently mediated by conversion to 25(OH)D. Analysis of the pooled 25(OH)D data from both the 25(OH)D- and vitamin D3-treated groups suggests that approximately one eighth of circulating vitamin D-like absorptive activity under untreated conditions in winter may reside in 25(OH)D. This is a substantially larger share than has been predicted from studies of in vitro receptor binding.
PMID: 9398723
Most people take the inadequate RDA as the less-effective D2 form in an ineffective tablet/powder form. More informed people are taking 1000 IU or more of D3 softgels. D3 is also a very cheap, easily available supplement. No one in Big Pharma or at the FDA is lifting a finger trying to protect D3 from Marshall's "science." No one is going to make anything close to a financial killing from D3, or by protecting the status quo.
Figure 6 summarizes why it's best to have a 25-D of at least 36-40 ng/ml. I've seen anecdotes of harm from 65 ng/ml, and 80 ng/ml is generally considered to be toxic.
http://www.ajcn.org/cgi/content/full/84/1/18
Hitman, I agree with everything you wrote about the Marshall protocol.
I'm not sure that I agree with your suggestion that 80 ng/mL is toxic. I read in the January 2008 vitamin D council newsletter (http://www.vitamindcouncil.org/newsletter/2008-jan.shtml):
QuoteThe reason levels up to 100 ng/mL are published normals is because there is no credible evidence in the literature that levels of 100 ng/mL do any harm and because sun worshipers often have such levels.
I'm aiming for a minimum of 60 ng/mL for myself. I'm a low responder to vitamin D supplementation (2000 IU/day only gave me 40 ng/mL). I don't plan on dosing so high every day. It was a trial to see how it would impact the Peyronie's. I consider it more of my winter "inoculation", and won't be dosing vitamin D again until January.
slowandsteady
Does anyone have a link to a good study showing the usefulness of Pentox in the active stage? Or is the only study the one showing the single 51 year old recovering at http://www.nature.com/ncpuro/journal/v3/n2/full/ncpuro0409.html (http://www.nature.com/ncpuro/journal/v3/n2/full/ncpuro0409.html)? If this is the one study why then do people feel Pentox is useful during the initial phase? Are there any other studies backing this up?
My doc in Europe I visited today did not prescribe me Pentox but was possibly interested in doing so if I had a good study to show. Good news he was open to discussion at least;)
Quote from: slowandsteady on November 17, 2008, 01:40:15 PM
Hitman, I agree with everything you wrote about the Marshall protocol.
I'm not sure that I agree with your suggestion that 80 ng/mL is toxic. I read in the January 2008 vitamin D council newsletter (http://www.vitamindcouncil.org/newsletter/2008-jan.shtml):
QuoteThe reason levels up to 100 ng/mL are published normals is because there is no credible evidence in the literature that levels of 100 ng/mL do any harm and because sun worshipers often have such levels.
I'm aiming for a minimum of 60 ng/mL for myself. I'm a low responder to vitamin D supplementation (2000 IU/day only gave me 40 ng/mL). I don't plan on dosing so high every day. It was a trial to see how it would impact the Peyronie's. I consider it more of my winter "inoculation", and won't be dosing vitamin D again until January.
slowandsteady
thanks for correcting me on that issue.
yes there is quite a variation in the the serum response to D supplementation. some of my friends had to go as high as 10,000 IU to receive similar values. Take a look at the image below:
(http://www.ajcn.org/content/vol73/issue2/images/large/013490A.jpeg)
by the way which form of D did u use when you took the 100,000IU dose? was it a tablet/powder or gel-caps?
Quote from: Hitman on November 17, 2008, 03:30:41 PM
by the way which form of D did u use when you took the 100,000IU dose? was it a tablet/powder or gel-caps?
I used Jarrow softgels (here (http://www.iherb.com/ProductDetails.aspx?c=1&pid=-153534006372541363&at=0) at iHerb).
Hitman, I certainly don't agree with Marshall on all of his far fetched conclusions either. But I think the results of his study provide some useful insights, namely that there are some pretty clear indications that supplements are not equal to sunshine. As I mentioned, there are other studies out there that show other important differences between the two approaches. But what REALLY convinces me of this is the fact that I have used (and AM USING) both the sunlight approach and the supplement approach. And I can tell you from personal experience that the sunlight approach works significantly better for me. There is no question that the light has worked far better for me than the supplemental D3. And, regardless of what the research shows, I will go for what works when I find something that works this well. Additionally, I have a nasty inflammation problem in my legs and the light works on that, but not the Vitamin D pills. And as for Marshall, if I really believed all of his conclusions, I would not be taking 12,000IU of Vitamin D3 each day. I would also suggest that, with Vitamin D3 effectiveness literally all over the map as evidenced in the study you present, that, at least in some cases, UV delivery would be more effective. Additionally, sunlight brings with it other components that the supplement lacks. Those would include things like co-occurring hyperthermic effect, endocrine modulating effect, along with other important adjuncts, some of which we may not even know about. - George
George if its working for you then I can't argue with it. You said however that you were using artifical sunlight? how did u manage to do that?
Quote from: bluth on November 17, 2008, 02:00:41 PMDoes anyone have a link to a good study showing the usefulness of Pentox in the active stage? Or is the only study the one showing the single 51 year old recovering at http://www.nature.com/ncpuro/journal/v3/n2/full/ncpuro0409.html (http://www.nature.com/ncpuro/journal/v3/n2/full/ncpuro0409.html)? If this is the one study why then do people feel Pentox is useful during the initial phase? Are there any other studies backing this up?
bluth, Unfortunately there is only the one study at this point on Pentox. So why would people use a drug with only one study to back up its effectiveness? Several reasons:
1) First and foremost, if you look around at Peyronies treatments, you will find few, if any, with more than one study to back up their effectiveness. Vitamin E, for example, is widely prescribed, and yet it has no studies demonstrating it to be effective. In light of this, one study doesn't look all that bad.
2) The 'one study' was done by a doctor who is really a renowned specialist in the Peyronies field, not a backwater researcher, and thus carries additional weight for that reason. And he is not only a renowned doc, he practices at a prestigious medical school.
3) Pentox is cheap, as such drugs go, it has a long track record of safety for long term use, has relatively few side effect, is reasonably easy to take, and it has been proven effect via multiple studies in terms of dealing with other forms of fibrosis. It is a known "anti-fibrotic" drug.
4) TGF-beta1 is a known and key villain when it comes to Peyronies and Pentox is known to target that cytokine.
I could probably come up with more reasons, but that is a start. To put it simply, when you start to critically examine the alternatives, Pentox shines like a star in the darkness. And that is not to say there are not other effect treatments, it is just that they are not nearly as attractive as Pentox. - George
Quote from: Hitman on November 18, 2008, 03:50:39 PM
George if its working for you then I can't argue with it. You said however that you were using artifical sunlight? how did u manage to do that?
Hitman, First of all, I want to thank you for calling me out on that stupid Trevor Marshall study. I don't know how I ever managed to use that dumb thing as an example. Please note the disclaimer I just added to the bottom of the post. It didn't actually take me long to figure out that I was trying to defend the indefensible. But I do have reasons that I am partial to the light at this point. One is that it bypasses the whole digestive pathway and the central process (liver and kidneys) by which the body converts Vitamin D to active D Hormone which is able to bind to the celular VDRs. D Hormone bound to cellular VDRs prevents auto immune damage (resulting in inflammation) AND causes cancer cells to naturally commit suicide, thus this is a very key metabolic process. In the case of sunlight its all very simple. The skin and underlying tissues perform the whole process from beginning to end. The whole process is under "local control" as opposed to "central control". Secondly, oral Vitamin D consumption also depends on the circulatory system to get D Hormone to the stressed tissues and often that circulatory system is itself compromised. In the case of sunlight, UVB is able to penetrate quite deeply down into the skin. Thus fairly large amounts of D Hormone can be amassed in a very close proximity to the problem in a case like Peyronies. This is an opportunity just begging to be exploited. AND, when you use both, you can provide two sources of D Hormone at once from two different directions. As to how it is done. It is done with an undoped, unshielded quartz halogen light. They get very hot and, like the sun, they can give one a nasty burn, so they need to be used with caution. Also, since they emit copious amounts of UVA/B/C radiation, sun glasses need to be used and even then it is better to completely protect the eyes as much as possible. At this point I don't want to over encourage you or anyone else to try this method. I still have a ways to go to verify its long term effectiveness, but so far it has been very useful. If your Peyronies is currently under control, I recommend that you stay tuned and I will keep you informed. However, for anyone struggling with trying to get a handle on their situation, I think this would be worth a try. So far it is working very well for me. - George
Warning, since posting this message, I have learned that using these lamps in this way can pose a danger, so I no longer will be using my lamp unshielded. - George
NOTE: Since posting the above warning, I have now changed to using a Sperti mercury vapor UVB lamp. These lamps are expensive, but they are designed for the purpose and thus safer than the halogen type. - GeorgeSee pics of my setup below:
I also use a timer so I don't fry myself:
Anybody tried Wobenzym therapy?
I started to take 3x5 tabletts per day and noticed that my pain in the leg and penis calms down. Additional I take 2000UI Vit D and 400mg full spectrum Vit E.
I found an interesting patent that states that the enzymes found in Wobenzym lower TGF-beta activity => http://www.freepatentsonline.com/EP1103272.html
On the same note, anyone try Fibrozyme? Both it and WobenzymN are made by the same company.
I've tried serrapeptase and nattikinase separately (Doctor's Best brand), but didn't notice anything immediately.
George,
I was just looking at the pics of your lamp setup. It looks like you have it mounted to the wall, is that correct? What type of wall is it? I was planning on mounting mine on the wall in my studio which is painted drywall, but was concerned about the heat issue. What type of material is yours mounted on? The one that I got at Home Depot (which we discussed by PM), didn't work out. The tripod would not hold in position and the whole thing was kind of shaky after assembly and was only about 5 feet tall sitting on collapsable table (not to mention it is on recall and was not supposed to be sold). I'm now looking at a couple of other 250 W single lamps at Home Depot, but I'm still concerned about the wall mounting due to the heat issue. What do you recommend? Thanks.
Fred
Fred, Actually it is not mounted on the wall, just leaning against the wall. As for the heat issue, the heat is pretty much projected forward from the lamps, the shells are usually finned and dissipate heat pretty well so they don't get super hot. I would think that what you want to really be concerned about would be things like having the lamp end up face down on carpet or against furniture when lit. That could cause a fire. Sorry that the first one you found was such a disaster. The free standing ones should be stable enough to sit on a table with no problem, there was definitely something defective about the one you got. In my case my walls are drywall which is pretty resistant to heat. But I have leaned this one I have against plywood walls before with no problems. I would never leave it on out of my sight, of course, but I would never have reason to do that. They do take some improvisation, that just goes with the territory. Any one you get, you should be able to try without actually mounting it, that we you can get an idea of how much heat it puts out in various directions. - George
Quote from: slowandsteady on November 20, 2008, 12:49:07 AM
On the same note, anyone try Fibrozyme? Both it and WobenzymN are made by the same company.
I've tried serrapeptase and nattikinase separately (Doctor's Best brand), but didn't notice anything immediately.
If you search those words with the forum search feature you will see they have been discussed.
I asked this question earlier but it may have been missed. Is anyone taking ALC whilst on mediacation for hypothyroidism? A lot of the sites that sell ALC state this warning:
"Carnitine is thought to affect thyroid hormone by blocking its action in cells. This suggests a potential concern: Carnitine might be harmful for people who have low or borderline thyroid levels to begin with."
I had been hoping to take ALC - but if the conflict is a problem I'll stick with L-Arginine.
Anyone with any experience?
Bent,
To say every body is different is an understatement. I see it all the time,. That is why we get different diseases. Since body is different and reacts differently to foods, allergens, and drugs,I think the warning you mention should serve as your warning. Every case of hypothyroidism is certainly somewhat individual. Even if a member or two with those conditions took ALC with no problems, that would not address what will result with you nor will it void the warning.
I just discovered a safety problem with using quartz halogen lamps. :( There are warnings on the net about the amount of UVC they put out. Though it is not very much, solar UVC is filtered out 100% by the earths atmosphere and it is potentially dangerous. Clear glass filters out virtually all of the UVC while passing most of the UVB, so I will no longer be using my lamp without its face glass. My apologies to anyone who has purchased one of these lamps, but I was unaware of this information and now that I am, I am posting a warning. - George
An earlier posting (https://www.peyroniesforum.net/index.php/topic,45.msg4098.html#msg4098) dealt with a possible response of one person's Peyronie's to high dose vitamin K. The amazon.com poster in particular used the synthetic version of K1 called phytonadione. Some on this board thought the poster was suspect. I don't necessarily agree.
I find the hypothesis that vitamin K might be beneficial to Peyronie's plausible. Besides its role in blood clotting, vitamin K plays a role of shepherding calcium where it needs to go (bone) and keeping it away from where it shouldn't be (soft tissue). The drug verapamil is a calcium channel blocker.
I'd like to give high dose vitamin K a shot. The Japanese use high dose vitamin K (http://www.ncbi.nlm.nih.gov/sites/entrez/16801507) for osteoporosis, so it does have a track record. FWIW, people with cystic fibrosis also seem to be deficient in vitamin K.
I'm surprised that the synthetic version of K1 (assuming the post was made in good faith) beat out the natural version. I'll try that first, but I will also try the MK-4 version of K2. K2 also has a MK-7 version (some background (http://www.menaq7.com/index.php?s=Links) on these two forms, but keep in mind they sell the MK-7 form) which has a much longer half life (like 100 hours vs 5 hours for MK-4). I am a little hesitant to take large doses of a vitamin with a very long half life.
slowandsteady
Regarding Vitamin K, I believe that anyone who is taking either Vitamin E or Vitamin D should be taking Vitamin K. Vitamin K prevents bleeding AND prevents calcium accumulation in soft tissues. Both of these are concerns for people dealing with Peyronies. I have taken Vitamin K off and on for some time and continue to take it. The only major risk that it seems to present if for those people taking blood thinners for any medical reason. They should NOT take Vitamin K without getting a go ahead from their physician since it can counter the effect of their medication and result in serious consequences. - George
There is currently available in most of the US a very affordable test for Vitamin D levels. The cost is reported to be between $60 and $120. The lab that does these tests with the most economic method is Quest Diagnostics. They have a page (http://www.questdiagnostics.com/hcp/topics/endo/vitamin_d.html) dedicated to explaining Vitamin D testing along with a patient FAQ (http://www.questdiagnostics.com/vitamind/index.html). I think that in the end, getting tested is probably the only way to either rule out Vitamin D deficiency or discover it with certainly and deal with it in a deliberate fashion. There is some uncertainty about appropriate levels of Vitamin D in the blood, but the safe range seems to be 30-60 ng/ml. Anything below 30 ng/ml is insufficient, and anything above 60 ng/ml poses risks over the long term. Anything over 100 ng/ml poses very short term risks.
One issue noted in the study pointed out by Hitman below is that people vary widely in response to Vitamin D supplementation. This is one thing that terrifies physicians. There are a few people whose blood levels of Vitamin D shoot up rather quickly in response to supplementation. Many of the Vitamin D experts are pointing out that far more people are at risk due to deficiency than would be at risk with higher intake. But for the practicing physician, the issue is that they will not be held responsible for all cause deaths or sickness resulting from Vitamin D insufficiency, but they WILL be held responsible if they don't warn against supplementation an and a patient is sickened or dies. - George
Quote from: George999 on November 22, 2008, 01:11:52 PM
There is currently available in most of the US a very affordable test for Vitamin D levels. The cost is reported to be between $60 and $120. The lab that does these tests with the most economic method is Quest Diagnostics.
One issue to consider is the lab you use. In the July 2008 newsletter (http://www.vitamindcouncil.org/newsletter/2008-july.shtml) from the vitamin D council, Quest was singled out for a potential issue with their test:
QuoteLong story short: if your lab report says "LabCorp" on the top, it is probably accurate; if it says Quest Diagnostic, it may be falsely elevated
Dr. Cannell goes into his reasoning in more detail in the newsletter. I've used LabCorp for my testing.
Here's what I was able to find about K1 safety: Vitamin K1 was found to be safe in dosages of 5 mg intravenously (http://www.ncbi.nlm.nih.gov/pubmed/14609783). This source claims that K1 was found to be nontoxic in doses of 20 mg (http://drugsafetysite.com/phytonadione).
Phytonadione comes in 100 mcg pills, so I need to take a whopping 50 of them to get up to 5 mg. I'm on day 2 now.
slowandsteady
some info about Vitamin K
http://www.menaq7.com/index.php?s=Links
Quote from: slowandsteady on November 22, 2008, 02:13:42 PM
One issue to consider is the lab you use. In the July 2008 newsletter (http://www.vitamindcouncil.org/newsletter/2008-july.shtml) from the vitamin D council, Quest was singled out for a potential issue with their test:
Thanks so much for posting this. The newsletter is full of useful information. I have seen other Vitamin D advocacy organizations steering their people to One Lab which has been acquired by Quest. What are we to do when even our medical lab work by huge providers can not be believed? Such is the sad state of our medical institutions. Who knows how many people are literally dying because of other tests they are screwing up? - George
I recently met with my primary physician to discuss Vitamin D. As a result of that conversation, I am now realizing that anyone wanting to resolve Vitamin D issues will face the same kind of obstruction as one deals with in trying to get a prescription for Pentoxifylline. Most physicians are like ten years ago when it comes to Vitamin D knowledge. For them, when you are talking about Vitamin D, you are talking about bones, not things like Peyronies. Therefore, I think it might be wise to carry a bit of information along with you if you choose to pursue that strategy. The two relevant articles I recommend on the subject are:
Quote from: Johns Hopkins Gazette
Low Vitamin D Levels Pose a Large Threat to Health, Researchers Say (http://www.jhu.edu/~gazette/2008/18aug08/18vitamind.html)
"Our results make it much more clear that all men and women concerned about their overall health should more closely monitor their blood levels of vitamin D, and make sure they have enough," said study co-lead investigator Erin Michos. ... "Now that we know vitamin D deficiency is a risk factor, we can better assess how aggressively to treat people at risk of heart disease or those who are already ill and undergoing treatment," said Michos, who added that test screening for nutrient levels is relatively simple. It can, she said, be made part of routine blood work and be done while monitoring other known risk factors, including blood pressure, glucose and lipid levels. ... Michos, an assistant professor at the Johns Hopkins University School of Medicine and its Heart and Vascular Institute, recommends that people boost their vitamin D levels by eating diets rich in such fish as sardines and mackerel, consuming fortified dairy products, taking cod-liver oil and vitamin supplements and in warmer weather briefly exposing skin to the sun's vitamin D — producing ultraviolet light. ... Michal Melamed, study co-lead investigator, who started the research as a clinical fellow at Johns Hopkins, says that no one knows yet why or how vitamin D's hormonelike properties may protect the heart, but she adds that there are plenty of leads in the better known links the vitamin has to problems with muscle overgrowth and high blood pressure, in addition to its control of inflammation, which scientists are showing plays a stronger role in all kinds of heart disease. But more research is needed to determine the nutrient's precise biological action.
The above is mainly cardio-vascular oriented, but it should get any physicians attention, since it is authored by researchers at Johns Hopkins, the same school where years ago Dr Alfred Blalock pioneered the first heart surgery ever. When these people say that anyone concerned about their "overall health" should have their Vitamin D levels monitored, that should speak loudly.
Quote from: ProHealth
Vitamin D Experts' "Call to Action" Urges Major RDA Increase to 2000 IU (http://www.prohealth.com/library/showarticle.cfm?LIBID=14114)
Anthony Norman, PhD - whose discoveries shape what is known today about vitamin D – has joined a group of 18 experts in urging the US government to increase its recommended daily vitamin D intake dramatically, to 2000 IU. At the same time they issued a joint statement "in support of the use of vitamin D for reducing incidence of several types of cancer, type 1 diabetes, and cardiovascular diseases." ... "The consensus among UC scientists who signed this statement is that 2000 IU per day of vitamin D3, a form of vitamin D, is the appropriate intake for most adult Americans," ... Norman explained that a 2000 IU daily intake of vitamin D can be achieved by a combination of sunshine, food, supplements, and possibly even limited tanning exposure. ... In its call to action, the group of 18 UC scientists, which includes researchers from the Riverside (3), Davis (3), Los Angeles (4), San Diego (5) and San Francisco (3) campuses, also issued a joint statement in support of the use of vitamin D for reducing incidence of several types of cancer, type 1 diabetes and cardiovascular diseases.
Here again, this article does not reference Peyronies, but it certainly references health issues that are of concern to most of us. And it carries plenty of authority by the fact that it is authored by no less than 18 experts from a single highly regarded University system. This should be enough to tell your doctor, "look, I am concerned about this and I want to find out what my Vitamin D level is and I want it to end up at or above 50ng/ml and stay there." - George
George, my Vitamin D tested at 32 so my Doc has me on 10,000iu per day. When I read about calcium affecting the soft tissue, I got worried because of Peyronie's. What amount of Vit K do you think I should be taking to safeguard against this?
Nemo
QuoteBent,
To say every body is different is an understatement. I see it all the time,. That is why we get different diseases. Since body is different and reacts differently to foods, allergens, and drugs,I think the warning you mention should serve as your warning. Every case of hypothyroidism is certainly somewhat individual. Even if a member or two with those conditions took ALC with no problems, that would not address what will result with you nor will it void the warning.
Thanks for the reply Hawk
Quote from: Nemo on November 24, 2008, 11:21:47 PM
George, my Vitamin D tested at 32 so my Doc has me on 10,000iu per day. When I read about calcium affecting the soft tissue, I got worried because of Peyronie's. What amount of Vit K do you think I should be taking to safeguard against this?
Nemo
I really don't know how to assess this. I can tell you that I am currently taking 500mcg of K1 simply because I have a bunch of K1 tabs around. Eventually I will probably shift to K2 which I prefer, if I need to continue taking the D3 for an extended period. - George
After four days of 5 mg phytonadione, I don't really have a lot to report in the way of changes. Phytonadione is synthetic, which I generally avoid in a supplement. I've switched to natural vitamin k2, specifically menaquinone-7 from natto, at 900 mcg/day (10 of the Jarrow 90 mcg (http://www.iherb.com/ProductDetails.aspx?c=1&pid=256&at=0) softgels).
As a dish (and I might try to find out whether my local Japanese restaurant serves it), it supplies 1000 mcg per serving, and in some regions of Japan this is eaten several times a week, so I feel that it should be safe at this level.
slowandsteady
anyone - does anyone think that peyronies is linked to low testosterone levels - Ive started taking tribulus - does anyone have any comments regarding this??
thx
Quote from: slowandsteady on November 25, 2008, 02:02:35 PM
After four days of 5 mg phytonadione, I don't really have a lot to report in the way of changes. Phytonadione is synthetic, which I generally avoid in a supplement. I've switched to natural vitamin k2, specifically menaquinone-7 from natto, at 900 mcg/day (10 of the Jarrow 90 mcg (http://www.iherb.com/ProductDetails.aspx?c=1&pid=256&at=0) softgels).
As a dish (and I might try to find out whether my local Japanese restaurant serves it), it supplies 1000 mcg per serving, and in some regions of Japan this is eaten several times a week, so I feel that it should be safe at this level.
slowandsteady
I agree with s&s on this. The Jarrow product is the best K product I've taken by far. I also recommend it. Worth the little bit extra it costs. - George
Quote from: Iceman on November 25, 2008, 07:54:05 PM
anyone - does anyone think that peyronies is linked to low testosterone levels - Ive started taking tribulus - does anyone have any comments regarding this??
thx
I am certain that testosterone plays a role in Peyronies vulnerability. The key question is "what is causing low testosterone levels?" Depending on the answer to that question, Tribulus may or may not be helpful. In my case, it was not helpful to any perceptible degree. My gut feeling about low testosterone is that it is a most often a result of a metabolic syndrome type thing. And I now view metabolic syndrome to be a result of bad diet, insufficient exercise, and/or low vitamin D levels. These three are the scourge of our modern world and are the root of most of the ill health and skyrocketing cost of health care. - George
Quote from: Iceman on November 25, 2008, 07:54:05 PM
anyone - does anyone think that peyronies is linked to low testosterone levels
Have we done a survey of testosterone levels? Mine are on the upper end of normal:
free testosterone: 18.5 pg/mL
serum testosterone: 780 ng/dL
slowandsteady
And mine is chronically low. Have used the synthetic T via gels, could not tell any difference in Peyronies Disease or how I felt. Stopped using it after approximately 1 year. It appeared to be causing my testicles to shrink. ???
Quote from: seaside2 on November 26, 2008, 12:45:51 PM
And mine is chronically low. Have used the synthetic T via gels, could not tell any difference in Peyronies Disease or how I felt. Stopped using it after approximately 1 year. It appeared to be causing my testicles to shrink. ???
Synthetic hormones seem to be consistently bad news. I believe that women taking bioidentical estrogen do better than with synthetic estrogen, for example.
Have you ever tried the testosterone precursor DHEA for raising testosterone levels? There is another form 7-keto-DHEA that only influences DHEA levels without affecting testosterone. Some good DHEA discussion here (http://www.imminst.org/forum/index.php?showtopic=22452).
slowandsteady
George, what you're saying about low Testosterone and metabolic issues sounds very familiar. A couple months ago I flew to Monterey, CA to be seen by Dr. Romeo Mariano, one of the country's most knowledgeable docs on male hormone issues (he's quite well known anywhere on the internet where there's a discussion of TRT, etc.) He's also just frighteningly smart on endocrinology and internal medicine (plus, he's a psychologist on top of that). I met with him for 2 hours.
I've had three testosterone tests over the last year and a half. The first was 235, then 434, then 460. I'm only 37. Dr. Mariano had a whole lot of other blood work done and found that my Estradiol was 10, which he said was too low and could result in ED issues in and of itself, beyond the Testosterone level. Beyond that, he didn't like my Vit. D level and some other aspects of my blood work.
Rather than put me on supplemental Testosterone, he said he thinks my problem is twofold: lack of proper nutrition and lack of restorative sleep. He said it's a metabolic issue that has my hormones all screwed up, operating in fits and starts, never very consistent. He's got me taking numerous supplements: Vits E, D, C, B125, B12, Multivitamin, DHEA, and a prescription for deeper sleep. I was impressed that he wants to get to the heart of the problem, not just slap on Testosterone.
He was not very familiar with Peyronie's but I did ask him if he thought the Propecia I took for two years (about a year before I got Peyronies Disease) could have played a factor. He was inclined to think not, but said he couldn't really ever know for sure.
Interesting stuff ... I believe my Testosterone level came up (the little it did) because I'd been supplementing with Arginine and Zinc, and he told me I could keep taking that stuff (along with the Pentox), because my erectile performance is much better since I've been doing it. I hope the nutrition and sleep will increase my hormone levels even further. I guess the old saying is true - you are what you eat.
Nemo
Nemo, When it comes to things like Testosterone, I increasingly believe that it pays to take a hard look at external or environmental factors. It is all too easy to try to cut to the chase and do Testosterone replacement directly, but the body is a veritable chemical factory when it comes to hormones and they are all interlinked. Messing with any of them is asking for trouble. I have sort of learned that lesson over again myself with Melatonin. It is not that these hormones are harmful in and of themselves. It is that the body seeks to maintain a balance among them in order to maintain health. When you disrupt that balance, problems ensue. The unique thing about Vitamin D is that it is probably the ONLY hormone that we are allowed to control, since all of it comes from external or environmental sources without exception. The reality is that even the people who rail against the use of Vitamin D as a supplement are controlling it externally by unnaturally restricting it. Note that those same people usually have no problem with sun blocks that completely eliminate natural Vitamin D production from sunlight. The result is that Vitamin D is probably the most unnaturally modified nutrient in the human environment. And this is precisely what we should be looking to correct, not all the downstream stuff that ends up being trashed. So I think your endocrine doc is very smart and is on precisely the right track by attacking at those points that are environmental in nature rather than try to use pharmacological short cuts. I believe this approach will pay off hugely in the long run. - George
Interesting to hear. My sleep was never good. I rarely sleep more than 6 hours in the week. This could be a reason for low testos and numerous problems I got. Thanks for the hint.
Nemo: What was your sleep duration at night before testos level increased again?
It wasn't a matter of sleep duration for me, it was a matter of never getting prolonged deep REM sleep. I would wake up frequently during the night (to roll over, for instance) then go right back to sleep. These constant interuptions keep me from getting deep, restorative sleep, which we all need. I'd wake up feeling as tired as I did when I went to bed, it would make no difference if I got 5 or 8 hours ...
Nemo
Sleep problems, feel tired even after a nights sleep?
I had that problem for about 20 years.
What caused it? Sleep Apnea
Go to a sleep clinic and get checked. You will be glad you did.
Jackp
George, we've addressed my concerns with large doses of Vit D before, but my hormone doc also has me taking 2000mg of Vit C a day. Somewhere, I seem to recall concerns about too much Vit C and Peyronie's. Does this worry you in any way?
Nemo
Quote from: Nemo on November 28, 2008, 08:37:08 PM
George, we've addressed my concerns with large doses of Vit D before, but my hormone doc also has me taking 2000mg of Vit C a day. Somewhere, I seem to recall concerns about too much Vit C and Peyronie's. Does this worry you in any way?
Nemo
Not really. Personally I prefer the time release version with large doses, but I would not really be concerned about any kind of toxicity. Some people *might* have a kidney stone issue, but as I recall, a little bit of magnesium can help avoid that. But 2,000mg of Vit C is not really that much. - George
Here's a current update on my vitamin K efforts. I do notice a reduction in inflammation in my active plaques with vitamin K. Whereas I had some low level pain during the day, with vitamin K the inflammation is minimal and the pain goes away. My working hypothesis for the mechanism is that vitamin K prevents soft tissue calcification.
I have tried two forms of vitamin K1 and two forms of vitamin K2. The only two that had an effect for me were the K2 forms, MK-4 and MK-7.
One supplement that has had a pro-inflammatory effect and that I don't recommend is resveratrol (despite my really wanting it to work for me, since it has numerous health benefits). In doses of 5g down to as low as 250 mg (taken with whey protein to enhance bioavailability), 99% t-resveratrol increased inflammation and pain in my plaques. I wonder whether this is because resveratrol chelates copper.
I'm never one to quit, so while continuing with the vitamin K, I will pursue other hypotheses.
1) perhaps the condition can be improved with more local administration of vitamin D. D3 from a softgel and DMSO?
2) infectious agent: could Peyronie's be caused by an infectious agent like those that cause lyme? I realize that this area is somewhat of a can of worms...
slowandsteady
I am interested in the idea of vitamin K being helpful but have not experienced it. After reading some of the forums regarding supplementing with it, it seems I may have been using the wrong kinds.
What sorts, brands and from what sources do people actually buy?
Tim
Quote from: slowandsteady on December 02, 2008, 02:28:17 PM
Here's a current update on my vitamin K efforts. I do notice a reduction in inflammation in my active plaques with vitamin K. Whereas I had some low level pain during the day, with vitamin K the inflammation is minimal and the pain goes away. My working hypothesis for the mechanism is that vitamin K prevents soft tissue calcification.
I have tried two forms of vitamin K1 and two forms of vitamin K2. The only two that had an effect for me were the K2 forms, MK-4 and MK-7.
I agree that Vitamin K may be helpful, especially in combination with Vitamin D. Right now I am taking K1 just because I have a lot of it on hand. But when its finished I am going back to Jarrow's MK-7. Its the very best when it comes to vitamin K.
Quote from: slowandsteady on December 02, 2008, 02:28:17 PM
One supplement that has had a pro-inflammatory effect and that I don't recommend is resveratrol (despite my really wanting it to work for me, since it has numerous health benefits). In doses of 5g down to as low as 250 mg (taken with whey protein to enhance bioavailability), 99% t-resveratrol increased inflammation and pain in my plaques. I wonder whether this is because resveratrol chelates copper.
Funny thing! I had to quit Resveratrol as well. It gave me a rash. I found that the rash was intense with some brands and very minor with others. My conclusion was that I was probably not reacting to the Resveratrol, but to the Knotweed that it was extracted from and that some brands were better refined than others. But that was just speculation.
Quote from: slowandsteady on December 02, 2008, 02:28:17 PM
I'm never one to quit, so while continuing with the vitamin K, I will pursue other hypotheses.
1) perhaps the condition can be improved with more local administration of vitamin D. D3 from a softgel and DMSO?
2) infectious agent: could Peyronie's be caused by an infectious agent like those that cause lyme? I realize that this area is somewhat of a can of worms...
slowandsteady
A natural form of transdermal Vitamin D delivery is via UVB light and it doesn't carry any of the risks that DMSO does. But its expensive and you need to make sure you don't overexpose yourself and get burned. I have been using a halogen lamp for this but after discovering that it exposes me to risky UVC, I am getting an expensive mecury vapor lamp with a UVC filter in place to block the UVC. I have been a bit concerned about this issue but have just discovered that commercial sunlamps sold prior to the 1970's era all emitted UVC and only recently has this been recognized as a danger. So a bit of exposure that I had probably won't be enough to do me in.
As for the infectious agent theory, anything is possible, but I think that is unlikely. More and more evidence seems to point in the direction of a metabolic cause, namely a deficiency in Vitamin D3. That is why top Vitamin D experts are advising that the RDA be raised immediately from 200IU to 2000IU. - George
Quote from: George999 on December 02, 2008, 11:02:54 PM
A natural form of transdermal Vitamin D delivery is via UVB light and it doesn't carry any of the risks that DMSO does. But its expensive ....
You can buy UVB bulbs at any good pet store and the cost is modest $10-$15 for a bulb. You must make sure the label says UVB and not just UV or full spectrum etc. I use them for my little lizard (with 4 legs).
Quote from: Hawk on December 03, 2008, 12:33:10 AM
Quote from: George999 on December 02, 2008, 11:02:54 PM
A natural form of transdermal Vitamin D delivery is via UVB light and it doesn't carry any of the risks that DMSO does. But its expensive ....
You can buy UVB bulbs at any good pet store and the cost is modest $10-$15 for a bulb. You must make sure the label says UVB and not just UV or full spectrum etc. I use them for my little lizard (with 4 legs).
Hawk, I think the problem with these units is 1) how much UVB do they actually put out? would it be a sufficient amount? and 2) do they filter out the supposedly harmful UVC? Other than that, they might well work, especially on a small area of the body and might be quite helpful, in fact their small size might actually make them preferable to the larger more expensive units. My larger concern would be the UVC question as to long term use. Perhaps somewhere that issue is documented. - George
Some reptiles need UVB and UVA, some only UVB. It seems ,in doing research lately I read one manufacture that specified in detail the amount and type. If I find it I will post it. It is however probably small amounts since it is designed to remain on most of the day.
You are probably way past this but as a general issue I just found this entire Wikipedia article very interesting.
http://en.wikipedia.org/wiki/Ultraviolet
Hawk, Thanks for the Wikipedia link. I read it before sometime long ago, but it was a good read as a refresher. It really doesn't include too much info on the the Vitamin D side though. The recent research I have read indicates that the most beneficial Vitamin D regimen is frequent (daily) brief (5-10 minutes) UVB exposures. This limits the amount of exposure time (carcinogenic risk) and maximizes the amount of benefit (anti-carcinogenic Vitamin D generation). There is still a huge battle going on between the pro-UVB people and the cancer hysteria anti-UVB types who continue to insist that any amount of exposure is too much. But current evidence is pointing in the direction that the human body is designed too deal with and thrive on sunlight and that the risks are mainly associated with excessive, infrequent exposures. As you note, the small reptile lamps are designed to provide continuous low level exposure which might not be practical for humans. I think I would probably find it a bit embarrassing to explain to my boss what I am doing with my new plug in accessory. ;D - George
Quote from: George999 on December 02, 2008, 11:02:54 PM
I agree that Vitamin K may be helpful, especially in combination with Vitamin D. Right now I am taking K1 just because I have a lot of it on hand. But when its finished I am going back to Jarrow's MK-7. Its the very best when it comes to vitamin K.
Quote from: slowandsteady on December 02, 2008, 02:28:17 PM
One supplement that has had a pro-inflammatory effect and that I don't recommend is resveratrol (despite my really wanting it to work for me, since it has numerous health benefits). In doses of 5g down to as low as 250 mg (taken with whey protein to enhance bioavailability), 99% t-resveratrol increased inflammation and pain in my plaques. I wonder whether this is because resveratrol chelates copper.
Funny thing! I had to quit Resveratrol as well. It gave me a rash. I found that the rash was intense with some brands and very minor with others. My conclusion was that I was probably not reacting to the Resveratrol, but to the Knotweed that it was extracted from and that some brands were better refined than others. But that was just speculation.
I may have to take back that resveratrol claim of mine -- now I'm not so sure. Let me explain: I usually take resveratrol with whey (Jarrow chocolate) to enhance its bioavailability. I also throw some berry green and some soy lecithin. I made my shake yesterday without the resveratrol and had a similar inflammatory response, so now I'm a little confused. I took 500 mg of resveratrol mixed in fish oil, and no reaction.
Quote from: George999 on December 02, 2008, 11:02:54 PM
A natural form of transdermal Vitamin D delivery is via UVB light and it doesn't carry any of the risks that DMSO does.
Now transdermal D3 with DMSO (I just broke open a tab of D3, applied it, and mixed some DMSO on top) on the other hand has in just a day and a half shown surprising promise in symptom relief, especially in an area of constriction (hourglassing), as opposed to a painful active plaque area. I'll keep it up and see what happens. I do know that DMSO can ferry lots of different chemicals across the skin, so you have to be careful.
slowandsteady
Is it important to buy vitamin 'D3' capsules, as I bought some 'vitamin d' capsules a few days ago but it doesn't specify anytimir beyond that and the i.u amount? Also if the appropriate D3 to vitamin k ratio is not known could it be possible to do more harm than good in terms of excess calcium levels in soft tissue?
I like this vitamin D3 softgel (http://www.iherb.com/ProductDetails.aspx?c=1&pid=-153534006372541363&at=0) made by Jarrow.
Health Pro Labs also makes a transdermal vitamin D3 cream (http://www.healthprolabs.com/product125.html), which might be an interesting product. They make many different transdermal products; I would imagine that they have developed an expertise in transdermal delivery. I'm going to email them to see whether they know how much of their product gets through the skin. In general, the larger the molecule, the harder it is to get through.
slowandsteady
There have been several posts dealing with Vitamin K lately, one including a question about appropriate dosing. Here is an article discussing a recently completed study dealing with Vitamin K. I think it includes some interesting and informative tidbits, so I pass it along here:
Quote
Vitamin K Slows Insulin Resistance in Older Men (http://health.usnews.com/articles/health/healthday/2008/12/05/vitamin-k-slows-insulin-resistance-in-older-men.html)
The three-year study, by researchers at the Jean Mayer Human Nutrition Research Center on Aging at Tufts University in Boston, included 355 non-diabetic men and women ages 60 to 80. One group took daily multivitamins containing 500 micrograms of vitamin K (five times the recommended level), along with a calcium and vitamin D supplement. The other (control) group took no vitamin K supplementation but did receive the multivitamin and the calcium and vitamin D supplement. Both groups were told to keep eating their normal diets. ... By the end of the study, the men who took vitamin K had improved insulin resistance and lower blood insulin levels than men in the control group. The study was published in the November issue of the journal Diabetes Care.
Certainly this report will not answer all the questions, but it does present a rational for Vitamin K supplementation which intersects with Peyronies issues and the 500mcg/day dosage gives some sort of benchmark level to work from. - George
Here's the study at pub med (http://www.ncbi.nlm.nih.gov/pubmed/18697901).
slowandsteady
George - Thanks for posting the study link. It really does help when different parts of the puzzle come together like this. Of course I'm not so optimistic to assume that a vitamin regime is a cure for peyronies but since visiting this forum I have come to the conclusion that I'd be foolish to exclude making it a meaningful part of the regime. There is science to justify it.
Currently I take:
Basic Multivitamin Pills
Vitamin E (Jarrows Gamma E 300)
Arginine
Omega 3,6,9 Oils
Acetyl L Carnitine
A further Carnitine supplement (Jarrows Carnitall 600)
L-Carnisone
N-Aceytl-L-Cysteine
Vitamin D
Vitamin K
I am always wary of going too far with any approach and as such like to keep the the amount of vitamins I take under control. As such I'm thinking that at some stage I might drop the supplements I've underlined from my regime, with the thinking being that ALC may suffice in that regard. I'd like a secind opinion though, so do you have a view on this approach?
In addition to the above supplements I have a very healthy diet compared to years back. I eat mainly fish, chicken, nuts and vegatables. Again I feel that for the sake of my sanity the occasional treat is acceptable, but I do make sure that it's very occasional.
Last but certainly not least, I take pentox 2-3 times a day. It's difficult to get a prescription for it for peyronies in the UK (which is absurd), and whilst I did manage to once, I have now looked online for my supply. I still have some left so I had time to explore sources. The mexican meds site listed here was the route I intended to go, but I send them an enquiry via email and it bounced back with a "mailbox is full" message. This to me is unprofessional and either means that they are getting masses of customer complaints or that they have not replied to peoples enquiries in a very timely fashion. For that reason I decided to give it a miss (they may well have legit pentox though, i have no way of knowing - other members here seem happy). I appear to have found a supply via http://www.inhousepharmacy.co.uk/ . This is ideal as I have dealt with the site in the past and they are reliable. It's not a primary product on the site, but they are ordering it in for me. I took the time to sign up to a user driven forum whose members effectively vet and comment on online pharmacies and the site also gets the thumbs up there. When the product arrives I will let you all know what I think, then maybe others in the UK can have a "hopefully" reliable source if they are not able to obtain pentox through any other means. It's a last resort, but a useful one too.
Newguy, I can only tell you what I am taking right now. I have dropped the Vitamin E, Arginine, ALC, and NAC. It is not because I think these are ineffective, because actually they were very effective for me especially the ALC. It is just that I am trying to concentrate on what seems to be working really well. And for me, that is the Pentox and Vitamin D. I am also taking the Omega 3 stuff, the Carnosine and the Vitamin K, along with a few other general purpose supps. I do like ALA and PolyPC for example and continue to take those. I also like Aloe Vera very much and am back on that. But my major goal right now is to get tested for serum Vitamin D and try to get that up to 50ng/ml and keep it there. - George
I found this study interesting, Green tea attenuates diabetes induced Maillard-type fluorescence and collagen cross-linking in the heart of streptozotocin diabetic rats (PMID 17336542 (http://pubmed.gov/17336542)):
QuoteGreen tea administration to diabetic rats significantly (P<0.05) decreased the fluorescence (0.73+/-0.02) whereas increased the solubility of collagen (41.5+/-1.04) indicating the reduction in advanced glycation end products and collagen cross-linking. The present study reveals that green tea by ameliorating myocardial collagen characteristics may provide a therapeutic option in the treatment of cardiovascular complications of diabetes.
The dosage was 300 mg (kg body weight)(-1)day(-1). Given the factor of 6 loose rule of thumb, that's still a bunch of green tea extract at 3.4 grams for a 150 pound human. OTOH, this site
Green tea polyphenols also suppress collagen formation (http://pubmed.gov/18463684) in benign skin tumors called keloids ("Keloids are benign skin tumors characterized by collagen accumulation and hyperproliferation of fibroblasts"). It also reduced the "cross-linking of tail tendon collagen" of diabetic rats (PMID 17884275 (http://pubmed.gov/17884275)). In case you're wondering about the use of rats with induced diabetes, the high glucose found in diabetes increases the rate of formation of advanced glycation endproducts, which do bad things like harden arteries, cause kidney failure, and harm the retina.
A big question is: to what extent is the cross linking in Peyronie's similar to that in diabetes? To slow down AGE formation, supplements like benfotiamine and pyridoxamine are available. Lowering blood glucose through good diet choices is a good idea for anyone.
slowandsteady
Edit: from wikipedia, "A fibroblast is a type of cell that synthesizes the extracellular matrix and collagen, the structural framework (stroma) for animal tissues, and play a critical role in wound healing. They are the most common cells of connective tissue in animals."
On keloids, "Biologically, keloids are fibrotic tumors characterized by a collection of atypical fibroblasts with excessive deposition of extracellular matrix components, especially collagen, fibronectin, elastin, and proteoglycans." This doesn't seem terribly unrelated to Peyronie's.
Quote from: slowandsteady on December 12, 2008, 04:14:20 PMA big question is: to what extent is the cross linking in Peyronie's similar to that in diabetes?
I think they are the same thing with the same causal factors. But that is just my opinion. I have used Green Tea in the past and have quite a bit on hand. I have always considered it interesting and probably useful and still do. - George
Note to all:
Green tea is now considered one of the better antioxidants in the supplement field. We have been using for quite some time since my wife has Type 2 diabetes. It seems to be working well for her. Our regular dinner tea is also Green tea and it works well for both of us too.
So, whether or not it has a place in the realm of Peyronies Disease, who know? At any rate we'll continue to use it.
Old Man
You know, I just can't stand the taste of Green Tea ... I have started drinking lots of unsweetened Black Tea (brewed myself from Lipton's loose leaf) ... I realize it's not as good as Green in most instances, but the taste/benifit trade off is one I'm willing to make.
Nemo
Nemo - You could always try green tea capsules. I know it's easy to become a little pill popping mad, but they are a decent alternative if you don't like the taste.
Quote from: George999 on December 12, 2008, 08:06:23 PM
Quote from: slowandsteady on December 12, 2008, 04:14:20 PMA big question is: to what extent is the cross linking in Peyronie's similar to that in diabetes?
I think they are the same thing with the same causal factors. But that is just my opinion. I have used Green Tea in the past and have quite a bit on hand. I have always considered it interesting and probably useful and still do. - George
I don't have a particularly high hemoglobin A1c number at 5.4% (this test tells you about your body's AGE load; the reference range is 4.8-5.9%). There must be something else to it, otherwise diabetics would get Peyronie's in high numbers ...
After a google search, I found this study (http://content.karger.com/ProdukteDB/produkte.asp?Doi=30220), "The Relationship between Diabetes mellitus, Impotence and Veno-Occlusive Dysfunction in Peyronie's Disease Patients":
QuotePeyronie's disease is an ill-defined condition that often leads to severe penile deformity and sometimes erectile dysfunction. Penile Doppler studies indicate veno-occlusive dysfunction as the principal cause of poor rigidity in Peyronie's disease patients. Diabetes mellitus is also a known cause of impotence and its prevalence tended to be higher in patients with Peyronie's disease. ... We believe there is a close relationship between diabetes mellitus and Peyronie's disease, considering our high incidence. We also conclude that diabetes mellitus is not the main cause of impotence in patients with Peyronie's disease.
I wasn't expecting to find that. It looks like there may a stronger link than I thought.
slowandsteady
We now know that Vitamin D accomplishes key functions in the body related to regulation of genes and DNA. This is such a low level function in the body that it underlies virtually everything else. Indications are that blood levels of 50ng/ml are required in order for Vitamin D to accomplish this function optimally. As Vitamin D levels decline, things begin to go wrong on the genetic level in areas that relate to an individual's particular and unique genetic weaknesses. There are always "things" that can "help" these specific genetic anomalies and the physical manifestations (disease) that results, but the underlying issue is often (but not always) Vitamin D deficiency. So this is why people who exhibit one of these diseases are often at risk to develop others. They all flow in the generalized stream of systemic inflammation and localized glycation hotspots. Since the underlying issues are at the genetic level, they manifest over a long period of time reflecting slow genetic decay in vulnerable genetic areas unique to the particular individual. Thus, the cure is probably equally elusive, requiring approximately five years of stable and optimal Vitamin D levels to gradually pull the individual's genetic map into an ordered state. But all of the research on Vitamin D is revealing it to be the closest thing to the "holy grail" of health that has ever been discovered previously. - George
I could bet that I an very low in D even though I havn't been tested. The only parts of me that have seen the sun in the past twenty years are my head, face and arms. Not very often for them either. I have also not been a milk drinker. I am now taking supplements and next summer I will make it a point to sun myself.
What's up everyone! Already introduced myself. I am 17 and just got peyrnoies disease. Basically I want to know what supplements and vitamins I should buy. I'm already going to get d3 and Vitamin E. What else should I grab that could help me out? Money isn't a issue. I am having a lot of penile issues and for my age its getting really scary. So don't be afraid to warn me about supplements and everything! Help would be apreciated! ;D
despise, Welcome back! To me the two most effective oral treatments out there, bar none, are Pentoxifylline and Vitamin D. Pentox need a doctors prescription and both need a doctors supervision. The tough problem in either case is convincing the doctor.
Pentox is the most useful and effective anti-inflammatory medication for Peyronies. But, unfortunately it is not FDA approved for Peyronies, and doctors buck at providing it off label, especially nowadays because off label prescribing is a hot topic in medical circles. Controversial and dangerous drugs are being demanded by patients and prescribed heavily off label by irreputable docs and so there is a backlash against that which gives all off label prescribing a bad name. No matter that Pentox is extremely safe and has long been used to treat conditions that parallel Peyronies, reputable docs are loathe to taint their reputation with any kind of off label prescribing. But there are a few docs out there who do prescribe it, most notably of course, Dr Lue in San Francisco.
Vitamin D is the most useful and effective all around systemic tonic. It works over time at the genetic level to eliminate systemic inflammation and promote healthy healing. But the fact that these properties have only recently been discovered puts it, in some ways, in the same league as Pentox. Doctors tend to want to take the "safe" route of advising patients to "lets wait another 30 years and make sure this actually does what we think it does". The ONLY real way to benefit from Vitamin D is to get a Vitamin D blood test. The ONLY lab currently providing affordable and reliable Vitamin D blood tests is Lab Corp. So it is a matter of testing and supplementing and testing again to try to get up to 50ng/ml. This will require help from the doctor. ALSO, the ONLY safe way to supplement Vitamin D in therapeutic doses is to have at least one serum calcium test and perhaps more. High doses of Vitamin D can dangerously raise serum calcium which can cause organ damage. Serum calcium tests detect this problem and prevent it from causing damage. This also requires a doctor's cooperation.
The fact that docs are dragging their feet on both Pentox and Vitamin D is frustrating. I can only suggest that if perhaps enough patients are politely demanding these two treatments, perhaps some of them will begin to look at this whole thing differently. We have just got to try to find ways to educate docs in this area. - George
What do you think about Cialis (Tadalafil)? On the webpage of a urologist in Hamburg, Germany, I found that he thinks it is the most promising oral medication for peyronies at the moment.
thanks so much for you help guys! i need a quick question my dad is coming over to pick up this vitamin and supplement list and going to buy them for me. what is the best full spec of vitamin E? what will it be called? what else should i get? should i get vitamin d or vitamin d3? should i get Acetyl-l-carnitine and propionyl-l-carnitine ? Jarrow's MK-7. k? TGF-beta1
Trental
Pentoxifylline
Potaba™
Colchicine
Carnitine
L-Arginine and Pycnogenol and these are the other ones i read about? what work and what don't work? money isn't a issue ill buy them all if they help! please answer quickly hes on his way thank you so much!
A couple of points:
"what is the best full spec of vitamin E?" - Good full-spec Vitamin E products will have 400IU alpha tocopherol + about 300mg gamma tocopherol + various amounts of the other 6 tocos.
"should i get vitamin d or vitamin d3?" - There are two common forms of Vitamin D. They are D-2 and D-3. D-3 is the preferred and most effective form for humans. Whatever you get should specify "D3".
"TGF-beta1" - TGF-beta1 is NOT a supplement. It is a cytokine that causes many of the symptoms related to Peyronies. You don't want more of it, you want less!
"Trental/Pentoxifylline" - These are the same thing. Trental is the patented version, pentox the generic.
As to what works and what doesn't, that can vary by individual. There are things that work better for some people, but don't work at all for others. The big hitters (in my opinion) would be Pentox, Vitamin D, Acetyl-L-Carnitine, Full-Spec E, and L-Arginine. Potaba is effective, but you won't have time to pop many other pills if you are taking 24 Potaba pills a day. - George
It's worth stating that here in the UK, milk is not routinely fortified with Vitamin D. To make matters worse it's not exactly beaming with sunshine for much of the year. I dread to with of the percentage of the population with a Vitamin D deficit is.
Ok! Heres what I got. MK-7 Vitamin K, Vitamin E E-400 the Vitamin Shoppe version, L-Arginine L-Ornithine 500/250, Vitamin D3 1000 IU, and Pycnogenol 30mg. Are all these healthy and beneficial for a 17 year old with peyronies disease? I know I needed the Vitamin E and the Vitamin D3, but did I waste my money for the others? I don't even remember what pycnogenol is for but I told my dad to buy and he did. :-X so can someone explain to me what the bennefits are of having the Vitamin K and Pycnogenol? Thank you all for your help especially you George! One more thing I was suppose to get the L-Arginine by itself but got it with L-ornithine is that bad?
Thought this to be interesting and am passing it along:
Quote from: The Herald
Bring me sunshine ... and health (http://www.theherald.co.uk/features/otherfeatures/display.var.2475459.0.Bring_me_sunshine_and_health.php)
In September Oliver Gillie wrote Scotland's Health Deficit: An Explanation and a Plan, claiming that lack of sunlight could be contributing to health problems in the nation. His report argued that being deprived of daylight - and the vitamin D which it helps the body make - could contribute to a range of conditions including depression, cancer and multiple sclerosis. ... Gillie has long-standing links with Scotland. Brought up in Tynemouth, his father was educated in Scotland and Gillie himself studied at Edinburgh University, where he obtained a BSc and then a PhD in genetics. ... Gillie claims: "The government has made a mess of it and they are not widely available. They could give advice on vitamin D without controversial advice on sunshine". In the meantime, GPs can prescribe the vitamins but few do. One who does is Dr Helga Rhein, a German doctor working now as a GP in Edinburgh. "In Germany, vitamin D supplementation for breastfeeding babies is routine. ... But Gillie is delighted that Rhein is now applying for funding for a randomised controlled trial to establish optimum dosages for the Scottish population and he himself is currently planning a controlled trial of vitamin D treatment with Professor Julian Peto, Cancer Research UK Professor of Epidemiology at the Institute of Cancer Research in Surrey. ... Allan Struthers, Professor of Cardiovascular Medicine at Dundee University, also thinks we should take a closer look at Scotland's vitamin D issue: "There are more cardiovascular events in Scotland in winter than summer. The time is ripe to conduct research into whether vitamin D administration might reduce this peak."
George! You didn't answer my question man. Are those supplements useful or useless? I got the Vitamin E 400IU gel capsules.
Quote from: despise on December 16, 2008, 03:42:51 PM
George! You didn't answer my question man. Are those supplements useful or useless? I got the Vitamin E 400IU gel capsules.
Everything you listed are things that I have used myself in the past and are potentially useful. I say potentially because every individual is different and some products benefit some people and not others. I don't see anything on your list that would be potentially harmful if taken in reasonable amounts (as advised on the label). I have advised you before as to what I currently believe are the best oral treatments and I am not going to repeat that. - George
George - The Vitamin D snippet you posted ties in pretty well with my understanding of the possible deficiencies here. It's great that concerns about this are spreading though, as it will likely help improve the situation. Without reading the latest research it wouldn't be obvious to the average person that there are such wide ranging benefits to increasing intake.
despise - It looks like you're taking very positive steps to help deal with peyronie's :). Stick with it.
I have a few questions.... What is spectrum E Vitatmin, how is it different than Regular Vitamin E ? I seen Spectrum E being promoted for PEyronies? And My husband now has the Pentox, I seem to have a perscription for an entire year or very close (it says 8 refills). We are waiting for the VED to come in the mail before starting it. How long is Pentox taken for --1 year, many years? His persciption starts out with 3 a day (these are 400mg), then month 2 and so on is "take 2 a day", is this what other Urologists perscribe? Husband is taking 3 L-argine tablets from GNC store right now, should he lower that dose when starting the Pentox? As I think both of these are supposed to promote Blood flow to lower extremeties. ???
Anyone on here with Low Testosterone problems every try Tongkat Ali? This is supposed to herbally raise your testosterone levels and increase sex drive. Been used for hunbdreds of years, grown in Indonesia and Maliasia. Husband may be trying this soon if Docs can not perscribe something for his Low Normal Testosterone levels. Insurance will not cover treatment as he is in low normal range. He is getting Hormal panel blood tests now, we are waiting for results. ???
Here are a few points for LoveMyHusband:
Full Spectrum E is a Vitamin E formulation containing all 8 natural toco's (various forms of Vitamin E). The usual Vitamin E you buy in the store contains only one synthetic toco, Alpha Tocopherol. A good full spectrum E will contain around 400IU of Alpha Tocopherol plus around 300mg of Gamma Tocopherol, plus small amounts of the other 6 toco's. In the past, I have found full spec E to be significantly more helpful than Synthetic Alpha Tocopherol which I have found to be practically useless. However, I am no longer taking Vitamin E at all, since I have found the combination of Pentox and Vitamin D to be more effective.
Pentoxifylline (Pentox) is, in my opinion, the singular best drug treatment for Peyronies. Pentox has a number of effects, but the key effect in terms of helping Peyronies is the fact that Pentox effectively inhibits TGF-beta1, a cytokine produced by the body that causes inflammation in the penis which, in turn, promotes Peyronies. Dr. Lue in San Francisco who is the real Guru when it comes to Pentox, prescribes 3 per day. At this point Pentox for Peyronies is really what amounts to a "maintenance drug" like a blood pressure med or statin med, which you pretty much take forever, since I does not seem to cure Peyronies, but it for sure stops it from progressing and in some cases can make it better. Congratulations on finding an enlightened doctor willing to prescribe Pentox. Few urologists seem willing to do so. It is a very well understood and safe drug and is unlikely to cause any side effects if taken with food. Without food it can and likely will cause stomach upset and nausea.
The VED is very useful in treating Peyronies and can be safely used with Pentoxifylline.
L-Arginine is fine if it is helpful. No conflict with Pentox. The function of L-Arginine has to do with Nitric Oxide production which dilates vascular tissue in the penis making it easier for a man to achieve and maintain an erection. This is quite different from the effect of Pentox which makes red blood cells more flexible so they can pass through damaged capillaries and thus oxygenate damaged tissue in the penis. The best form of L-Arginine I have found is a product called SANN VasoFlow.
Tongkat Ali ... I have used Tongkat Ali briefly in the past. For me it was very effective. But I stopped using it for two reasons. The first is that I simply don't trust these Asian herbs in terms of purity or potential contamination. I am not going to risk my health when there are better ways to achieve the same end. Secondly, Testosterone is a hormone, I have real misgivings about fooling around with hormones. The function of hormones in the body is tightly linked between the different hormones. And hormonal imbalances can cause nasty side effects. I have already experienced that with Melatonin, and I am learning to be very cautious with hormones. If your husband really wants to address his testosterone issues, the best way that I know of is to find a doctor who will help him to get his Vitamin D issues in order. Vitamin D is a hormone precursor. And it is the ONLY essential hormone related substance that is a ubiquitous part of our diet and environment, which we must achieve completely from outside sources. Research is showing it to be essential in regulating most if not all of the other hormone levels in the body and research is showing most people to be deficient in Vitamin D. I personally view Vitamin D as a major culprit in Peyronies and I have found it a useful tool along with Pentox in dealing with Peyronies. But to properly deal with Vitamin D issues requires the help of a doctor. One needs to take large quantities of it to restore the body's Vitamin D reserves, but in order to do that safely requires monitoring of blood calcium levels and to do it effectively requires periodic testing of blood Vitamin D levels. The only company that offers a reliable and affordable Vitamin D test at this time is Lab Corp. Quest Labs also offers an affordable Vitamin D test but there are questions as to the accuracy of their testing. Lab Corp is currently considered the Gold Standard by people in the know.
Hope this is helpful. Welcome to the forum! - George
George,
You keep bringup the D3, but haven't mentioned the D3 lamp lately. How is that going? Are you using the D3 lamp or the halogen? Also, do you know how often it is recommended that one have calcium serum level checked when taking "therapeutic" amounts of vitamin D. Right now I'm only taking 2000 IU per day but would like to go higher. For years I was going to the doc for a yearly checkup, but haven't been in a while, mainly because I've become somewhat disillusioned with the medical profession in general. As we have discussed before the uro I'm seeing now never even heard of pentox...just told me to take vit. E and see him in 6 months (March). I was also prescribed Xanax at one time by my doc's nurse practioner and told not to worry about dependence. I ended up having anxiety attacks and going to a psych. who put me on 40 mg. Valium per day and told to slowly taper, since valium has a long half life. That has ended up being a struggle in itself. Most of my experiences with the med profession in the last few years have been on the negative side. But I keep hoping to find a good one, especially a urologist who can get me on the right track with this Peyronies Disease. Thanks for your contributions on this forum.
Fred
Fred, I continue bringing up the D3 because I DEFINITELY believe it is helpful over the long term. I believe that because of the results of literally thousands of studies on D3 over the past few years AND I believe that because of the insights recent research has provided as to the specific actions of D3 in the human body AND I believe that from my own personal experience. At this point I have been off any form of Vitamin E and ALC and all the other "Peyronies supplements" for weeks and continue to see slow improvement with no regression and no flare ups. The D3 lamp *seems* to be helpful and I am using it. I am currently taking 4,000IU oral plus the 5mins total with the lamp daily.
The serum calcium issue seems to be doctor specific. Some docs are much more paranoid about it than others. Personally, I simply took 6,000IU daily for a few weeks then had it tested. It turned out to be on the low end, so from there I moved it up to 12,000IU per day for a couple of months and have now throttled it back to 4,000IU. Not very scientific, I know, but as you point out, the docs are not terribly cooperative on these things and I lead a busy life and am willing to take some risks with this kind of potential benefit. I have a comprehensive blood test which will include a calcium test scheduled for the first of the new year. I am also planning to "request" a serum Vitamin D test on my next visit. I'm sure I'll get the raised eyebrows, but I will be ready with paper to prove my point.
I was on Xanax myself for a long time. I was having panic attacks and heart palpitations. The doc actually prescribed Xanax to deal with the panic attacks and Metoprolol to deal with the palps. Neither were particularly effective. I had a history of panic attacks that went back years. In my case, taking the Aloe Vera cured both the palps and the panic attacks about five years ago and I have had zero problems since and no need for Xanax. And now, I may be nuts, but I am pretty well convinced that D3 is the answer to most of these problems and lack of it likely the main causative factor. - George
Well, George, it is true that you may be nuts, but I continue to learn from you!
Tim
George. I just got back from my urologist yesterday and he says I don't have much plaque. Is there any concerns with taking vitamin d3 worsening the plaque? Because if I don't have a lot of plaque I don't want to accidently make it worse.
despise, What do you think? I have Peyronies. I am taking a ton of D3. I would not be taking the D3 if I thought it was going to make my plaque worse. If I were you, I would be far more worried about the effects of the xanax and the pot than about something like D3. For one thing the pot is going to bend your mind over time so you can't think straight or have good judgement. You have been given so much good advice by so many people here on this forum. But only you can choose to follow through on it. You are, of course, always welcome to ask new questions. But ONLY following through on the answers you receive will help you get better. - George
Right but I could have sworn I heard some kind of study where the vitamin d can cause it to calcify or something to that sort. Just making sure thought cause Im in the early stage of the disease and it would be a total bummer to make it worse. Thanks for the help man always appreciated.
Aha! despise ... You are right! One of the risk factors of Vitamin D is soft tissue calcification. The way you avoid that when taking large amounts of Vitamin D is 1) you take Vitamin K with it and 2) you do it under the supervision of a doctor who will administer blood tests to make sure your serum Vitamin D levels are not rising to a dangerous level. So yes it IS a risk, but it is a risk that can be effectively MANAGED to the point that it is no longer a risk if that all makes sense. - George
Yeah that makes sence! I don't know if I can take that risk! I't would cost money to get those vitamin d tests so I can't do it. Whatevers im pretty sure my uro is a idiot and my biggest problem is urethral damage. So much stress!
despise, What you really DO need to do for your own protection is to request a Serum Calcium test from your primary doctor. These serum calcium blood tests are dirt cheap, probably around $30. But I would not do megadoses of D without periodic serum calcium tests. - George
Ok george you seem like you really believe in the vitamin D! I will wait untill after my urethral stricture test and then I will get right on with the vitamin D!
Fellas,
I need an article or two that describes how doctors are treating Peyronie's Disease with Pentox or Trental. My doctor discontinued my prescription and I want to provide him with documentation on the effectiveness of the drug.
Thanks.
Here is the famous Lue study.
It is not my intent to throw cold water on the use of Pentox but it is also not my intent to give a pass on the scrutiny that we typically exercise when new treatments are suggested. We owe it to ourselves to always apply such scrutiny.
This paper rather than representing a study, represents a single case report of one man. Additionally Dr. Lue ends this case report by making a point to say that "These results, however, are not typical
for the large number of men who suffer from this disease, further underscoring the need for continued research into the etiology and treatment of this common ailment." (bold added)
The one encouraging additional piece of information near the end of the report is "We have identified 16 patients so
far, and will present our data in the near future. Since pentoxifylline has been shown to inhibit fibrosis in humans and in animal models, we generally use it in patients who have evidence of ongoing inflammation (e.g. pain) or fibrosis
(e.g. changing curvature). We have not generally used it for patients with chronic stable lesions or with heavy calcifications, since we presume these to be stable and less amenable to pharmacologic intervention. We have seen"
This report is almost 3 years old and the case may be much older than that. Why would there not be more substantial data by now in the form of a true study, or at least a file of case reports?
What additional information has Dr. Lue or others provided in the last 3 years?
You should also print and bring this "knol" by Tom Lue...
http://knol.google.com/k/tom-lue/peyronies-disease-acquired-deformity-of/YjC9Puq6/B9bMvg#
Although not an officially published update to "the case study", in the section "What medical non-surgical treatments...." there is a very interesting table and the following comment re Pentox:
"We have noted regression of calcified chronic plaques in over 50 men treated with 6 months of pentoxifylline"
Good luck, this "knol" helped in my case with my doc.....
I HIGHLY recommend that everyone here who might have an interest in Pentox READ the knol referenced by Mike below. This is a VERY cool document that contains items of interest for those who might be interested in other potential treatment options as well. But if you are trying to convince your uro to prescribe you Pentox, this thing is NOT optional. TAKE IT WITH YOU along with the Lue case study. - George
That link is excellent. It is in our "Resource Library" for quick access.
Quote from: Hawk on December 23, 2008, 12:42:13 AM
That link is excellent. It is in our "Resource Library" for quick access.
And credit where credit is due to Tim for posting that "knol" last summer. Folks, George is right. If I had not had a printout of that "knol" with me, I very much doubt my doc would have prescribed Pentox. I basically had three documents, the case study, the knol, and this following article where Dr. Levine also mentions the benefits of Pentox:
http://findarticles.com/p/articles/mi_hb4393/is_/ai_n29347608
In my case, being Canadian, the article references a presentation made by Levine at a Canadian congress and so it holds sway with my doctors to present documented evidence that the two gentlemen considered to be the foremost authorities on Peyronie's Disease in North America BOTH mention the benefits of Pentox treatment.
I suggest that anyone trying to get a Pentox prescription bring all three documents...
Good luck to all!
Hawk, The Levine article should probably be archived as well if it is not already. - George
Good call George,
I attached the Levine article along with the Lue case report. We now have 3 documents supporting Pentox. They are in two clearly labeled topics within our Resource Library
Thanks Guys. I am sure they will be a good/convenient resource for others.
any reason to believe that pomegranate can help with Peyronies Disease?
On the subject of vitamin D3, it is documented on the Weston A Price website that vitamin A taken in excess amounts to that of vitamin D3, can interfere with the working of D3 as can a vitamin A deficiency. This ratio is commonly seen with cod liver oil.
http://www.westonaprice.org/basicnutrition/CLOUpdateDec2008.pdf
http://www.westonaprice.org/basicnutrition/cod-liver-oil-menu.html
There is also an ongoing discussion on mercola.com
http://articles.mercola.com/sites/articles/archive/2008/12/23/important-cod-liver-oil-update.aspx
Mercola recommends a ration of 4 or 5 to 1 in favour of vitamin D3 to vitamin A. It is also important to take Vitamin K2 (MK7 version) with D3.
Quote from: Hitman on December 24, 2008, 09:31:01 PM
any reason to believe that pomegranate can help with Peyronies Disease?
Hitman, I certainly believe that antioxidants are beneficial and pomegranate is an excellent antioxidant. My only concern would be that if you were taking the juice form, be very careful that you are not getting an excessive amount of sugars, especially nasty stuff like HFCS. Other than that, it can only help. - George
Quote from: Silver on December 27, 2008, 12:26:46 PMMercola recommends a ration of 4 or 5 to 1 in favour of vitamin D3 to vitamin A. It is also important to take Vitamin K2 (MK7 version) with D3.
Silver, I would certainly agree with this as well as with most of the rest of your post. However I believe that cod liver oil is a poor choice for Vitamin D supplementation mainly because of the fact that it supplies excessive, EVEN UNSAFE, amounts of Vitamin A. Anyone taking Vitamin D in significant doses should be getting adequate Vitamin A as well. My own method of choice is to take large amounts of carotene complex thus providing my body with the resources to produce as much Vitamin A as it needs. My concern with taking Vitamin A directly is that the body is not very good at getting rid of excessive Vitamin A and I really do not want to risk toxicity when it is easy to bypass this problem with the carotene strategy. For this reason I would very much disagree with the advice presented on the Weston A Price website. Of course K is also extremely important to prevent calcification of soft tissue and help drive calcium into the bones where it belongs. And MK7 is hands down the best formulation of K.
I think it is important to understand that it is fairly easy to build up toxic amounts of Vitamin A that are sufficient to cause liver damage. Anyone taking significant amounts of Vitamin A should be doing it under the supervision of their primary doctor and that doctor should be doing blood tests to make sure they are not sustaining silent liver damage. Don't be led astray by advice on non-medical websites that won't be around when you end up with serious liver disease as a result of following their advice. I think it is also important to understand that while true Vitamin D toxicity is very rare, 1% to 2% of individuals can have parathyroid issues that are being masked by low vitamin D levels. When you start to normalize your vitamin D levels, those underlying parathyroid issues can surface in a nasty way by causing your serum calcium levels to spike. This in turn can cause serious and even fatal organ damage. This is why it is important to get inexpensive serum calcium tests while you are building up your Vitamin D levels. The reality is that you can poison yourself with either Vitamin A or Vitamin D WITHOUT causing symptoms. So yes, DO NOT believe the hysteria that says you should NEVER take Vitamin D or Vitamin A. But DO understand that there ARE risks involved in either and DO take precautions, namely, do it with the assistance of a qualified medical professional who can advise you in doing it safely AND can perform the necessary testing to guarantee that degree of safety. That said, I think it is a lot simpler in the case of Vitamin A to simply load up on carotene which does not present the same toxicity risk as Vitamin A. - George
I usually stick to a 6:1 ratio of D to A. 6000IU of vitamin D3 to 1000IU of natural vitamin A (retinol).
Hitman,
Pomegranate is good for you but I know of no data relating it to Peyronie's Disease. It is rich in anti-oxidants, though.
Tim
the reason I brought it up is because it useful for arterial plaque, so perhaps it could be also useful for Peyronies Disease, but I could be wrong there.
I can only tell you guys to be careful with Vitamin A. You CAN fairly easily overdo it and the results can be nasty. - George
some interesting links to Vitamin A in this thread:
http://www.imminst.org/forum/index.php?showtopic=26533
Quote from: Hitman on December 27, 2008, 07:31:25 PM
some interesting links to Vitamin A in this thread:
http://www.imminst.org/forum/index.php?showtopic=26533
Very interesting indeed! I would continue to lean toward the argument that one could achieve most if not all of their Vitamin A requirements from the carotenes, mainly beta carotene, which also supply significant anti-oxidant qualities of their own and are very safe. It would, however, seem like those on low fat diets and those on vegetarian diets might need to supplement with Vitamin A. Personally, I would not feel comfortable doing this beyond 5-10 thousand IU without physician oversight. In no case would I risk taking synthetic A, there have just been too many issues with synthetic nutrients. - George
Quote from: George999 on December 27, 2008, 11:10:32 PM
Personally, I would not feel comfortable doing this beyond 5-10 thousand IU without physician oversight. In no case would I risk taking synthetic A, there have just been too many issues with synthetic nutrients. - George
Like most substances, vitamin A has a U-shaped curve. Apparently the sweet spot is about 1k-2k IU.
I'm a bit scared of preformed vitamin A such as retinol palmitate (http://en.wikipedia.org/wiki/Retinyl_palmitate) and prefer to take vitamin A precursors. AOR's ortho-core (http://www.aor.ca/html/products.php?id=96) is a good one that provides several different types of carotenoids. Excessive intake of retinols have been associated with damaged bone health and other woes, possibly through interference with vitamin D (see this month's vitamin D council newsletter (http://www.vitamindcouncil.org/newsletter/2008-december.shtml)).
slowandsteady
Reflecting on the ongoing discussion regarding A and D, I keep coming back to the question of why am I taking large amounts of Vitamin D in the first place. The answer to that question is that research is showing that more than half the population is severely deficient of Vitamin D. But if I am taking D, do I also need to take A just because there is an interrelationship between the two? What if I do not have a deficiency in A? Would supplementation with A still make sense? These questions led me to look around at what other people are learning. And when I do that, I find that research seemingly is showing that most Americans are actually overloaded with A to near toxicity, probably mainly because foods Americans typically feast on contain large amounts of A or A precursors. The Mercola article linked by Silver discusses this whole issue at length. All of this further reinforces my conviction that the carotenes represent the better route to maintaining healthy levels of Vitamin A. - George
Hello and thank you for this forum. I've combed through quite a lot of it the past few days. First I'd like to express my gratitude for the efforts of everyone involved and to extend my encouragement and empathy to all.
My history is a bit complicated and I'll detail it sometime soon. At the moment I'm exhausted and trying to gather information quickly. I'm curious to know though, if, like me, anyone reading this has had a microvascular bypass performed for erectile problems because of arterial blockage due to trauma.
In brief - I'm 46. I have diffuse scarring covering almost half my penis which resulted in a loss of sensitivity, but very little curvature. This began about twelve years ago (post surgery) and progressed for about two years, then more or less seemed to stabilize. About 6 weeks ago I injured my penis and while using an erection ring. I very suddenly developed a noticeable hourglass deformity which is now interfering somewhat with ejaculation, and I believe my ED is also getting somewhat worse (my surgery was only a partial success). For the first time in years I'm getting some noticeable pain although it's not too severe.
I've got a laundry list of questions but I'll try take take these one at a time.
First question - A naturopathic doctor I consulted highly recommends taking a very large quantity of L-Arginine, starting at 3 grams per day and working up to 21 grams per day! Has anyone had this recommended to them? He claims success with several other patients and seems amazed that anyone would think a small quantity would do any good at all. No, he didn't offer to sell me L-Arginine.
I'm currently taking 2 or 3 grams a day and am feeling a bit cautious about increasing this due to warnings of potential lung inflammation (see wikipedia and the mayo clinic) and since I haven't found nearly this large a dose recommended anywhere else.
Thanks so much,
Thin Man
I am no doctor, but 21 grams sounds like an incredibly massive dose. I take 2-3 grams a day and have for the past 15 months, ever since my Peyronies Disease was first diagnosed. When I first started taking the L-Arg the very knowledgeable owner of the vitamin store said that one of the most possible side effects of taking L-Arg was lots of canker sores in the mouth. Luckily, I have had none. I would really seek a second, even third opinion on this. Best of luck.
I don't know. L-Arginine may increase slightly the asthmatic response, but OTOH, it has many good effects. In general, the starting dose mentioned would be usual; the end dose (much higher) would be unusual - not sure about dangerous.
I'd love to know precisely what positive response he has had with it. Pentox would be a better bet, almost certainly.
Tim
Welcome to the forum Thin Man and thank you for the kind words.
One question, you said you very quickly developed an hourglass after injury. If quickly means within a week or probably more I think that could be plaque or scaring. If quickly meant within a day, then it either had nothing to do with the injury and was developing independent of the injury or it is more of an inflammation issue that could be temporary.
My only experience or understanding of L-Arginine is based on personal experience and on general dosing information of those that sell it (and want you to take large amounts), and a handful of Peyronies Disease experts in urological community that prescribe Pentox, arginine, Viagra to treat Peyronies Disease. We often refer to this combination as the "PAV coctail". None of these sources approach the dose you mention. Even to catering to body builders that are not known for moderation suggest up to 6000mg in divided doses. I have dabbled with doses ranging from 500 mg per day to 4000 mg per day. The latter was broken into 3 doses. I can tell you that when I started arginine I took one 1000, mg tablet and could clearly see the effect in blood flow to the penis within 45 minutes. In fact I cannot say that doubling that in one dose had any more immediate effect.
As far as long term treatment or outcome is concerned I do not believe that anyone has any objective comparative data between regular and massive doses.
As far as side effects are concerned, the only side effect I ever noticed was stomach pain/upset soon after dosing. That side effect has been pretty regular but manageable with me and I cannot imagine dumping 21 grams into my gut.
Without getting into all the details (that are posted elsewhere), there is some evidence that L-novaline prevents the conversion of arginine into a substance is ineffective and potentially problematic. Vaso Flow brand name has novaline added in a time-release L-Argine capsule. You can do a forum search for novaline to read more on its function if you like.
From my personal experience with L-Arginine (which I've been taking at 2-3 grams a day for about a year and a half), I would never injest anywhere near 21 grams. I think you'd puke, in all likelihood. I use Vasoflow, and while I know it's high quality stuff, the oily nature of the capsules would gag a magget - even the smell makes me want to blow chunks. From what I've read, Vasoflow is the best stuff out there though, so I hold my breath, throw in a couple capsules and swallow fast before I taste it!
Even with other more standard powder filled capsules, I think that much L-Arginine would be really hard on the stomach and possibly have negative effects on your blood pressure. As Hawk said, even bodybuilders aren't dropping that much of it. I'd say proceed with caution.
Nemo
Nemo, while the smell does not bother me that much I do not particularly like it. After others complained I experimented and notice that if I pull a few capsules out of the bottle that they quickly (an hour) lose most of the odor that seems to be the result of a tub of these things tightly contained in a huge jug.
I also have little trouble taking pills and I have taken tons of supplements. I can throw a handful down with one sip of water. However, I was a care giver for my Mom who hated pills. A nurse taught me that a big tablespoon of yogart makes ALL the difference in the world.
Anyone bothered by Vaso Flow should try these 2 tips.
Thanks for the feedback everyone, I will proceed with caution and continue to search for answers, but so far I haven't seen this much Arginine (21 grams daily!) recommended by anyone, anywhere. I have an appointment with Dr.Wessels in Seattle but not until six weeks from now (unfortunately, despite pleading with all my heart). I'll have many questions for him. I posted my high dose Arginine question on peyroniesassociation.org's "ask the doctor" section about a week ago. We'll see if someone responds.
Thanks also for the Vaso Flow tip - yes it was on my list of things to check out. Is $42 a good price for 360? I may have to get these online, my local health markets don't have it.
I haven't noticed any huge amount of increased blood flow from Arginine. Some yes, but I'm not sure if it's from that or other supplements I've been taking (see below) or from acupuncture treatments, maybe all of these. Then again I've got arterial blockages from 2 old injuries and an attempted bypass which was not a great success. Sounds like I'd better get the Vaso Flow and whatever else you guys might recommend to get the blood flowing, since that's my number one problem. My morning erections are rarely very rigid, it's been that way for years and as I understand that's a big risk factor for what I'm facing now - brand new hourglass deformity (it's been 5 weeks, seems to be permanent) and my erection quality seems to be declining the past 2 weeks - I dearly hope it's just anxiety, but I think something is changing for the worse.
Hawk - thanks for asking about my injury, more coming on that. Where should I post it? - Progression topic? Sometime I'll write a longer blurb for the Histories topic but I don't have energy for that now.
Thanks also for making sure I know about PAV - yes I've seen that discussed many times here and I've read Dr. Levine's book, looked over his "ask the Doctor" page, etc.
For what it's worth I haven't had any stomach problems with the Arginine so far, nor any issues with L-Carnitine, Vitamin E and Bromelain which I've been taking. Pentox is quite another story - coming in my next post.
In gratitude,
Thin Man
Has anyone tried Stimulin? - or for that matter similar products found on Dr. Herazy's Peyronie's Disease Institute site? I've seen a few good reviews of their products here, but fewer than I would have hoped. Evidently Stimulin contains L-citrulline, allegedly more effective than L-Arginine. Unfortunately they say it's proprietary and don't list the ingredients which is really annoying - they do for about 6 other related products, most of which contain Ginseng, which I'd rather avoid.
My problem is not libido (unless it's crushed by despair). Mainly I'd like to know what is recommended for increasing blood flow. I fear my ED will put me at greater risk for further damage. I can't afford large quantities of Viagra and would rather avoid it on a normative basis anyway since I don't like the side effects. Less so with Levitra and Cialis, but still these don't make me feel good and are costly. I haven't tried HGW yet which seems to be popular - any product recommendations?
Also I'm contemplating ordering Dr. Herazy's Message and Excercise video. Any thoughts?
Thanks so much,
Thin Man
The number of herbs, vitamins, and "proprietary medicines" out there in the Peyronies Disease treatment world is mind-boggling and mind-numbing. And really, how many have received any positive results? There are the tried and true triumvirate of Pentox, L-Arg and E. And it looks like Vit D is a worthy addition. But to my mind (and pocket book) that is about all I would be willing to pay for.
IMHO traction/VED with the aforementioned vits and Pentox make for a very manageable, cost-effective treatment plan.
I have been to that Dr. Harazy's web site and found it...hmmm, let's just say...less than inspiring.
Hopefully, with the new administration the FDA and other government regulatory agencies will be able to grow a pair and stop a lot of the deceptive and misleading products and information out there.
Hello Thin Man.
I had good luck with blood flow and Nattokinase purchased at Dr. Herazy's web-site. I used to get cold hands... Once I took Nattokinase for a while, it stopped. I noticed the difference physically, once I started taking it.
Ted.
Attica! - Thanks, I'm grateful for the feedback. I'll have to look into Vitamin D.
Are Pentox and Arginine really "tried and true"? I'm just getting started with this but everything I've encountered so far from medical sources comes packaged with skepticism. On peyroniesassociation.org the blurb for Pentox states "At this time there are only a few case reports which have indicated improvement of scarring and possibly reduction of calcification in Peyronie's plaques, but these have not been confirmed in any multi-center or large-scale controlled trials." Also their Arginine description states "there is no evidence from a placebo-controlled trial that there is any benefit."
Nevertheless I'm trying both. Doing nothing is not an option.
I'm giving Pentox a second try, just one a day to see if I can adjust. It makes me tired and gives me mild vertigo. The tingling in the legs is pretty weird. Anyone have any advice? My pharmacy instructions say I shouldn't break them in two - does that defeat some kind of time release function or can I safely break them?
Also I've got the generic Pentox, not Trental. Any disadvantages for the generic?
Thin Man
Thanks so much Ted,
I'm about fifty fifty on Dr. Herazy so far, haven't ordered anything yet but I tend to be sensitive to many prescription meds - so I'd really like to find alternatives.
I searched this site for Nattokinase and found this, from George999.
QuoteOne area I am backing away from is the whole anti-fibrotic scene with Neprinol, Nattokinase, etc. Recent studies have indicated that antifibrotic strategies my actually backfire on the user and may actually, through some unknown pathway actually make the problem worse. So at this point, I am becoming more cautious with that approach.
Yikes! Any more info on this anyone?
For that matter I've been taking about 4 grams of Bromelain for the past three weeks, during which time my condition has worsened. (Then again it could be due to discontinuing Pentox, or neither of these factors, who knows?). Bromelain was recommended to me as a healthier anti-inflammitory than Advil. Bromelain appears to be a similar enzyme to Nattokinase.
Thin Man
Hawk, I'm taking lots of supps too and, like you, can swallow a frightening amount in one big gulp. The thing about Vasoflow that grosses me out is not the size, or even the smell, but the disgusting oil they're coated in. I haven't looked at the label to see what it is, but ... yuck. I occasionally will pour a bunch out and literally dry them off with a paper towel and put them in another container so I have a few days worth of un-slimy Vasoflow. For instance, if I put Vasoflow in a plastic bag with some other supplements (to take to work, for instance), if I don't wrap them seperately or dry them, they "slime" the other pills/capsules.
Just random complaining, I don't doubt it's good stuff - I just hate the taste/smell/slime. Nothing I can't live with though.
Nemo
Thin Man,
As far as Pentox and L-arg being "tried and true", I meant that those two along with Vit E seem to be the most acknowledged as "safe". By safe, I mean you know what you are getting and doing to your body. A lot of the other vits, chinese herbs, and proprietary medicines can be confusing and you never know what their potency, quality, etc. is.
But, while we all have to remain optimistic, we must also be realistic. And I have yet to read anywhere that someone took Pentox or L-arg or anything and bingo-bango, eight months or eight years later their Peyronie's was completely gone and their penis was straighter and stronger than ever. Sad to say, it just doesn't happen. At least not yet (still trying to stay optimistic).
I remember when I first noticed my upward bend and curve to the left, it was Sept. 6, 2007. I was away for a long weekend with the woman I was dating at the time. We were having sex and I looked down and saw the bend and thought "WTF is that?". It just happened in an instant. One minute straight, the next minute, pointing north. When I got back home on Sunday night (Sept 9) I Googled "bent penis" and was hurled head first through a brick wall...Peyronie's Disease. I was stunned, scared, angry and filled with the "why me?" that we all go through. On Monday I called and made an appointment with a urologist (couldn't see me until the 17th) and then the official pronouncement was made. In the time between waiting for the Dr's appointment I must have spent 8 hours a day reading everything I could on the internet about Peyronies Disease.
After digesting everything I decided to go with traction, Pentox, L-arg and Vit E. My results have been posted on the traction pages. (My urologist, while claiming to have treated a lot of Peyronies Disease patients, just sort of sat there and said "Well, what do you want to do?" Good thing I was fore-armed with all my crammed information.) I took Pentox for the first 6 months, but when the prescription expired I did not re-new it. And I couldn't tell any difference.
I guess what I am trying to say, is do what works best for you. Every case has common denominators but yet is unique to it's owner. But, it can be expensive and frustrating to work through the maze and haze of all the products out there. That is why I say L-arg and E (and Pentox, even though I personally don't use it). Plus I have now added Vit D3 (learned from postings on this board), it's inexpensive and if you take reasonable doses, safe.
Best of luck. And don't panic. It's a marathon race, not a sprint. Oh, btw, you haven't mentioned traction or VED, are you using either? Considering them?
I would have just a few comments related to the last few posts here.
1) While there are a lot of supplements and medications that can be helpful for Peyronie's, there are only a few that are significantly helpful in my opinion. And, as anyone here will know, I've been through a LOT of supplements. The ONLY oral treatment approaches I currently regard as being significantly helpful are really Pentoxifylline and Vitamin D. Both of these take a LONG time to work. You will definitely NOT see overnight results. What you will see is that you will almost certainly not get worse. And over the long term, measured in years, you will likely see improvement. While not very dramatic in their action, these two shine compared to other approaches. Pentoxifylline is an extremely well understood and effective anti-fibrotic medication with a long term track record. With Pentoxifylline, it is extremely important NOT to break the pills OR take them without food. ALWAYS take Pentoxifylline with food. They are usually prescribed as 400mg 3X/day. That works out to one with each meal. This tends to concentrate them into the day time ours, but that is likely a good thing since the bulk of their action is targeted anti-inflammatory in nature and inflammation tends to peak during the day time. Doing this way will keep their side effects to a minimum while likely maximizing their effectiveness. There are a few success stories out their with Pentox, mainly from people who got on it and stuck with it. Try to find success stories on other approaches. Lots of luck. They aren't there, period. Vitamin D is another story. The main attraction of Vitamin D is not in stories of its success rate in treating Peyronie's. The attraction of Vitamin D, rather is in the reams of research demonstrating its tight connection with all manner of disease and metabolic dysfunction due to deficiency issues. Added to that is what we now are finding out about the prevalence of Vitamin D deficiency. So, for me, Vitamin D is a real no brainer. We know that deficiency is related to disease in general and we know that most of us are deficient. The ONLY solution is to get our Vitamin D levels checked and get them fixed. That will give the Pentoxifylline a solid metabolic platform on which to do its job. Adequate Vitamin D normalizes/optimizes hormones and genes AND increases immunity while decreasing auto-immune sensitivity. On the genetic level, Vitamin D takes FIVE YEARS to do its job IF you are deficient when you start taking it. So Vitamin D is another long term project. Both Vitamin D AND Pentox require guidance from a physician for safety and efficacy, so there is a need to take adequate documentation to the physicians to enlist their support.
2) Once you have the above down, there are other things that can be helpful, of course, in individual cases. Each of us are unique individuals and what helps one person might not help another. So, in general, if it works, go for it. Just know that some of the more exotic herbs and supplements might not include what the label claims and some might include some things the label omits which might equate to a severely bad experience. Also know, that some things which might be helpful over the short term might not be helpful over the long term and, in fact, might even be detrimental over the long term. Others are well understood and potentially very useful. By this I am referring to things like Vitamin E and L-Arginine, Acetyl L Carnitine, Horny Goat Weed, etc.
3) Regarding Dr. Herazy. Somehow, one cannot get into a discussion about Peyronie's without Dr. Herazy's name coming up. As far as Dr. Herazy is concerned, I bought some stuff from him ages ago that was helpful, and found him to give a lot of helpful and practical advice. For those of you who might not be aware, Dr. Herazy is not a medical doctor. He is a chiropractor. I do not mean that as a criticism, but only to suggest that his professional medical knowledge and training is limited. I do not think we should imply any lack of integrity on his part, BUT we DO need to realize that he is marketing these "treatments" and that his profit margins might color his judgments on them in some cases. I have personally found his markups to be extremely reasonable. But, nevertheless, he IS making money off of selling these various treatments, some of which I personally find extremely questionable.
4) And somehow from Dr. Herazy, we jump to another ubiquitous topic in the Peyronie's community, Neprinol. Neprinol is the quintessential enzyme therapy. It is manufactured in India and marketed in the US by Arthur Andrew company with a lot of PR and full out marketing hype behind its sails. Personally, I think Neprinol is potentially very useful medically. I find it one of those things I consider very interesting. I think it needs to be studied extensively in a genuine research setting. But, I have to say, for Peyonie's, I consider it useless. So flame me if you must. There are a few people around who claim to have been cured by it, but I have not yet seen one of those accounts that I would put my money on. So I would strongly advise that you not spend your money on Neprinol which is VERY expensive. I don't consider it terribly harmful in terms of Peyronie's at this point (other than to your pocket). But its NOT effective.
5) Then we come to Nattokinase. Quite honestly I have nothing really against Natto. Natto, like CoQ10, is used pharmaceutically in Japan. It is really a very useful blood thinner. While I once linked it to Neprinol in the famous quote Thin Man dug up below (it is a component of Neprinol), I doubt that it would be very harmful in terms of Peyronie's. But it won't help your Peyronie's any, blood flow wise or other wise. That said, I consider Neprinol an effective and inexpensive blood thinner that is extremely undervalued in western medicine. But if its blood flow issues you want to address, Pentox is the way to go hands down.
6) Bromelain. Bromelain is a good anti-inflammatory. But not good enough or targeted enough to be effective with Peyronies. Here again, Pentox is the way to go. Dr. Herazy can NOT offer you Pentox because Pentox is a prescription drug. Remember that when you consider Dr. Herazy's advice. - George
Many thanks George,
Can you tell me why it's not a good idea to break Pent ox in two?
The clinical nurse who prescribed me Pentox (assistant to Dr. Weasels, Seattle's local expert) told me it would be OK to break 'em. I haven't tried that yet, looking for a second opinion - the Pharmacy instructions say not to break, chew or crush.
Pentox gives me mild but quite noticeable vertigo and tires me out. Also, Pentox makes me feel strangely hot (not feverish), during exercise, and I'm getting the tingling in the legs other have complained about (I suppose that might be a good thing? - but it doesn't feel so good to me). The aforementioned nurse advised me to stop taking it, so I stopped for two weeks and and my body felt much better overall. Meanwhile my scarring has worsened so I'm giving Pentox a second try and hoping I'll adjust - I'm starting with just one a day.
Thin Man
Thin Man, I think the main reason for not breaking Pentox would be that it is pretty much agreed that 400mg three times per day IS the effective dose and by breaking them you are reducing the effectiveness of the drug perhaps significantly. As for the side effects, I would be very cautious about going against the advice of the nurse. I would think that before doing that you should be consulting with a doctor who is much more familiar with Pentox, since the effects you are noticing may be danger signs. Pentox is a very good drug, but nearly all drugs can be dangerous to some who may be uniquely sensitive to them and you do NOT want to risk a dangerous drug reaction. These would be my thoughts. But I definitely would be dealing with the Vitamin D side and trying to get your doctor's help in sorting that out. - George
Thin Man,
Ask the pharmacist that told you not to break them. My experience is that the warning not to break or crush usually is associated with a time release version of a pill that is made to have timed breakdown of different layers. Cutting and exposing a cross section to stomach acids defeats the pill design. I did not think this applied to any version pf Pentox (generic or otherwise) but it might. Often time release have letters such as: (Sustained-release (SR), extended-release ( ER, XR, or XL), etc on the tablet and prescription.
One of the issues that I don't see addressed here as often as I would suspect is the pain associated with Peyronies. Penile pain was my first indication that something was wrong (about 2 and 1/2 years ago now.) At first it felt sort of like a urinary tract infection...my GP's nurse practioner first put me on a 10 day course of Cipro, which of course did no good. I then went through over a year of, at times, pretty intense pain. AsI've stated before. I mentioned this pain to my regular urologist, who just kind of shrugged it off. I took ibuprofen for the pain, which sometimes helped unless the pain was very bad. I finally made an appointment with another urologist this past September after developing a curvature and was diagnosed with Peyronies, which I had figured out myself by then. When I mentioned the pain to him, he said I should only be experiencing pain with erections and that if I had pain while my penis was flaccid that perhaps I should be referred to a neurologist. He prescribed vit. 200 IU (I'm taking 400), and made a followup appointment for March. Meanwhile, I'm still experiencing almost daily pain, although not as intense as before and I've stopped the ibuprofen after reading lots of material regarding the dangerous side effects. I also have GI issues (frequent heartburn and constipation). My new uro would not prescribe pentox (in as I've reported here before) he seemed to have never heard of pentox and definitely stated that it was not mentioned in any of the literature. I'm bringing this up again because I'm still experiencing pain and was wondering how many others are dealing with this symptom. I can still achieve a pretty firm erection, although the condition, especially the pain, has really limited my sex life. I know I've reported all this before, but I'd just like to know how common it is to have almost daily pain. How many reading this are experiencing pain of any degree on a fairly regular basis and what are you doing to deal with it. I remember at one point George was mentioning Mangosteen juice, which I still haven't tried. For those fortunate enough to be getting pentox, are you achieving a reduction in your pain? I would appreciate any suggestions from those who have found successful treatment for this symptom, which is one of my biggest issues with this condition. Thanks.
Fred
Fred
Quote from: Hawk on January 02, 2009, 12:56:56 AM
Thin Man,
Ask the pharmacist that told you not to break them. My experience is that the warning not to break or crush usually is associated with a time release version of a pill that is made to have timed breakdown of different layers. Cutting and exposing a cross section to stomach acids defeats the pill design. I did not think this applied to any version pf Pentox (generic or otherwise) but it might. Often time release have letters such as: (Sustained-release (SR), extended-release ( ER, XR, or XL), etc on the tablet and prescription.
Hawk, I just checked my Pentox bottle prescribed by Dr Lue. The label reads: "Pentox TAB 400mg ER". I think this would indicate that these are formulated as extended release tablets and I shudder to imagine the consequences of taking these after breaking them open. It could explain some of the weird reactions some guys are having. Pharmacists almost ALWAYS know more about drugs than doctors and nurses are an especially untrustworthy source for this type of information. ANY pill splitting should always be verified with the pharmacist. And it is not just the time release issue involved. There are medications with an extremely critical enteric coating to prevent interaction with stomach acids. You break the pill and you inactivate the medication. I could go on, but don't break pills without express consent of the pharmacist. - George
Fred, Pentox is the best thing for pain relief. Take ALL three documents on Pentox and Peyronie's listed on this website to your doctor. Tell your doctor that both Dr Lue and Dr Levine, both top Peyronie's experts recommend the use of Pentox, as documented in these papers. - George
Thanks, George. I've downloaded the Lue, Brant, et. al. document. Is there an "archives" area or someplace where I can locate the others? Thanks.
Fred
Fred, Look around again. Hawk was going to stash them somewhere around here. - George
They are in the "Resource Library" board off of the forums home page
Fred,
I read your post reqesting those who have a lot or daily pain. But just to point out the opposite is also true. I never had any pain associated with Peyronies, with a 70 degree bend. It would be interesting to so some type of poll covering the whole spectrum of those who experience no pain, to those experience severe pain.
Hi Fred,
I guess we need a few guys with severe pain to chime in on this one. I'm also lucky that my pain is pretty minimal, but then again I've got other issues I wouldn't wish on my enemies - story at eleven.
I was also taking Ibuprofen since I was concerned about inflammation. A Naturopathic Doctor recommended Bromelian as an alternative. It's a natural enzyme made from pineapples. I honestly don't know how much it would help with pain, but I was told I should take about 4 grams a day for inflammation.
Thin Man
Gentlemen, Thanks again for your very thorough advice.
I learned a few things about Pentox from a very helpful pharmacist. The ER stands for Extended Release, absolutely right. This is exactly the same for the name brand Trental version as for the generic - there is no other version of Pentox and there is no smaller dose available much to my chagrin.
I wasn't given a stern warning about trying half a pill, but the following has convinced me not to. In the research stage of Pentox a version was tried which was just a regular pill, not ER, and about ten percent of recipients experienced dizziness. With the ER version it was about one percent. Lucky me.
This sounds hauntingly familiar. In my pre op consultation with Dr. Goldstein I asked him what the risk was of getting scarring from a penile bypass procedure. He said about one percent. Lucky me.
Story at eleven,
Thin Man
Thin Man,
I think a poll regarding pain is a good idea. I'm not sure where it should be posted though. Maybe Hawk can give us that information. I'd like answers to questions such as: Pain with erections only; Pain in flaccid state: Degree of pain on a scale of 1 to 10: How often does pain occur: How long have you experienced pain: What treatments have been beneficial: Etc. Personally, my pain started out in the spring of 2006 as a sort of mild irritation, like a UTI, worsened over the next few months until I was experiencing daily pain and taking 600 to 800 mg. of ibuprofen a day, then kind of leveled off in the spring of 2008 to the point that I was able to discontinue the ibuprofen (although I could still benefit from some days, but became worried (side effects) which are numerous and can be severe). Right after the pain subsided and I stopped the ibuprofen, one morning I woke up with a partial erection and noticed the curve. My theory is that the ibuprofen, which is a good anti-inflammatory, was keeping the inflammation down somewhat and perhaps preventing the curvature. (Don't know...it's just a hunch). Also, I have not had pain with erections but often after an erection I will experience pain. Mine can come and go from moment to moment, sometimes it seems depending on my stress level. I've read posts here which have reported increased pain with stress (another good poll question). So let's find out where to start the poll thread and see what kind of data we can come up with.
Fred
Fred,
A forum poll is a one question format that would not serve the purpose. Your suggestion has merit but it would require a Webpage survey. Good surveys are way trickier to design than most would imagine. After they are designed they have to be converted to HTML and links have to be setup on our Website (not on our forum). This is probably mere work than I can invest right now. I currently have no web design /forum administration expertise assisting with our site so it all depends on my effort.
I will keep it in mind and toy with the idea as time permits.
Hawk
Thanks for your hard work Hawk,
I think surveys on this and other topics would be a great idea for the future, but another angle to consider before moving forward is -- to be useful we would want to have as many respondents as possible. After looking though about two years of posts I that see many people come and go, understandably. I'm sure we all need a break sometimes - again my gratitude to you and the other admins/major contributors for persisting.
Is there a way to send email notices to everyone who's ever been on this list? I'm sure almost everyone would be glad to give their input if they knew it was needed, but it could be many would never be aware of a survey if they haven't logged in for awhile. Also this could be a good way to bring some lurkers out of the woodwork.
Anyway you've probably thought of this already, but I hope this helps.
Thin Man
Personally, I think such a poll would be very interesting. But I am still not clear as to what we would do with that information if we had it. Supposing 23% of guys with Peyronie's had pain and 60% didn't and the rest couldn't remember. What do you do with the numbers? Ditto for degree of pain. You would have an array of rankings from 1-10 or whatever. What sort of useful thing would you do with those numbers that would justify the labor of creating the poll? Perhaps there is something extremely useful about this, but I think we need to be clear on it before we move forward. - George
George, on August 19 in your comments on Vita E you stated -
QuoteFrom what I have heard, taking 400IU along with Pentox is probably safe *for most people* and up to 800IU *may* be OK.
Of course you added -
QuoteBut, again, I think your physician can best advise you on that and he can also do some objective testing that would tell him exactly how your body is responding to the Vitamin E in this regard.
Fair enough. I assume you mean the IU for Alpha Tocopherol. I just got two new brands of full spectrum Vita E. The only ingredient listed in IU is the Alpha Tocopherol, the rest are all given in mg and it state the IUs haven't been established.
How does one gauge how much to take? By the Alpha Tocopherol IU? - and then the rest is .... whatever it comes with? The breakdown of ingredients among brands are quite different, especially for the Alpha Tocopherol. For candidate #2 you'd have to take 3 of these to approach the same Alpha Tocopherol as candidate #1 and then you'd getting way more of everything else. Also it would cost 3 times as much - the price is reasonably close for both.
Candidate #1 - Now Foods Tru-E Bio Complex
Tocopherols
Alpha 200 IU
And then it says "typical distribution".
Alpha 135 mg (is this additional? I guess not, unclear to me)
Beta 2 mg
Gamma 200 mg
Delta 104 mg
Tocotrienols - also "typical distribution"
Alpha 3 mg
Beta 1 mg
Gamma 6 mg
Delta 23 mg
This one also says it's the first NON-GMO Vita E
Candidate #2 - Jarrow Famil E
Tocopherols
Alpha 41 mg (60 IU - MUCH LOWER !!!)
Beta 3 mg
Gamma 250 mg
Delta 84 mg
Tocotrienols
Alpha 11 mg
Beta 1.5 mg
Gamma 22 mg
Delta 5 mg
This doesn't say anything about "typical distribution".
I was also contemplating ordering some of PDI's full spectrum E since I'm putting in a small order. For the Yazoo brand they carry it says "in their natural unesterified form as found in our food.". It doesn't state a breakdown, but the Alpha Tocopherol is 400 IU.
Anyway is this kind of variance among products typical? - and does any of this really matter as long as we get some of each? I suppose the source could also be a factor. I see from prior posts you've been trying different variations on Vita E, so no need to rehash the entire history (taking Gamma exclusively etc), I've skimmed through it (for those who are interested I would suggest a search on the the word "tocopherol"), but have you (or anyone else) come to any conclusions by now? I'm hoping to stick with just one Vita E product for awhile and keep it simple, but if there's good reason to get fancier...?
In gratitude,
Thin Man
I should have thought of this sooner - here are the links to the two products. These are the only ones I could find in stores here in Seattle (surprisingly).
http://www.nowfoods.com/Products/ProductsbyCategory/Category/M072411.htm?cat=Vitamins
http://www.jarrow.com/product/292/familE
I am looking to buy some L-arginine, Ginkgo Biloba , Horny Goat weed, I have a Gold card for GNC but often I also buy from Puritans Pride. So many brands to choose from, I just want to know I am getting "quality" vitamins/herbs. If anyone has tried a number of various Vitamin brands and can see a difference, please post, give advice.
When I first starting buying my L-arg and Vit E, I went way across town to a very trendy, upscale natural foods and herb shop and bought the Solgar brand. Then after a few months I started going to the GNC, couldn't tell any difference. That being said, according to many respected voices on this board VasoFlow is the best L-arg out there. It is kinda pricey though.
I like the Jarrow because of the higher gamma/alpha ratio. I get it at iHerb (http://www.iherb.com/ProductDetails.aspx?pid=3304&at=0).
slowandsteady
Quote from: ThisSux on June 19, 2007, 03:24:34 PM
FYI,
For those who are avoiding all supplements that could lead to increased collagen production (such as Lysine), I want to bring your attention to the fact that Whey protein powder (which many people use for muscle building) contains about 2grams of lysine per 25-30 grams of protein powder (about one scoop). This is quite a lot of lysine (I believe) and I think I will have to drop it from my supplements and look for a protein with an amino acid profile not so heavy on the Lysine.
I also noticed that, when I drink a whey protein shake, my active plaque regions get hard. I made one at 4 pm yesterday and they were hard until I went to bed, only this morning becoming softer. I would imagine that this is not good, but I'm not sure.
What could be the reason for this reaction? I don't know if it's the lysine, though I suppose that I could test it with supplemental lysine alone.
slowandsteady
Both Puritan's Pride AND GNC products are dependable AND affordable. SANN VasoFlow is the best Arginine product on the market due to the fact it contains powerful cofactors. GNC *might* carry it or *might* be able to get it for you because they have been known to carry a few SANN products in the past. It is expensive because it contains some other stuff besides Arginine that is more expensive, but I have found it worth the extra cost. I have taken Ginkgo pretty extensively in the past and ended up pretty much considering it worthless in dealing with Peyronie's. Horny Goat Weed along with Arginine are helpful. Both GNC and Puritan's Pride carry Horny Goat Weed these days I believe. Be careful when you buy Horny Goat Weed as to what it is combined with. It is usually not sold in a pure form. If you get it with Maca, a common cofactor, that is fine, but I would stay away from other ingredients such as Yohimbe which will not be helpful and can be dangerous and just add more problems. Yohimbe, unfortunately often appears in Horny Goat Weed preparations. The refined form used to be used as a prescription drug to treat ED but it can easily dangerously raise blood pressure and cause other problems so I would avoid it like the plague. The Horny Goat Weed/Maca combination is safe, effective, and easy to find. Both GNC and Puritan's Pride should have. Straight Horny Goat weed would be best, but it can be difficult to source. - George
Hawk, This thread really belongs under oral treatments and should be merged with it. - George
In regards to the Vitamin E questions. I know I have left somewhat of a confusing trail of Vitamin E posts on this thread, probably more than I can ever try to clean up in the rest of my lifetime. I will try to clear up some of that confusion in this post. I initially said that I found Natural Alpha Tocopherol more effective than Synthetic Alpha Tocopherol. I stand by that statement to this day. I then said I found the Broad Spec Vitamin E's which typically provide a ratio of 400IU Alpha Tocopherol + 300mg Gamma Tocopherol + Other Tocos to be even better. I stand by that statement. Later I said that I was moving away from Alpha Tocopherol completely toward the Other Tocos. That, in the long run proved to be a mistake which is why I stopped advising it and moved back to advising the full spec form. The problem is that Gamma Tocopherol, especially, is actually pro-inflammatory. Somehow that seems to work out OK when taken in combination with sufficient Alpha Tocopherol, but I would caution at this point against taking it in isolation. I doubt if it would be a significant factor with Peyronie's, but I consider the 400IU/300mg approach to be the more effective method with E. So I am back to recommending the 400IU/300mg combo pills. NOW Foods makes a good one and Yasoo's is the best out there, albeit probably the most expensive as well. PDI is the best place to get it, they have the best pricing. Iherb has good pricing on the NOW product. The 400IU combo product is definitely safe for most people along with Pentox. Jarrow is a great company with great products. If the higher gamma Jarrow products works for you, that is fine. But if you have any indication of increased inflammation, Peyronie's or otherwise, I would quit it and go back to the 400IU/300mg type products.
In regards to the whole collagen issue. Peyronie's is driven by auto-immune/inflammatory/metabolic dysfunction issues, not things like levels of collagen production. If that were not the case, one could just starve themselves of foods that generate collagen and cure Peyronie's. But no matter how much you try to lower collagen production, the body will just steal it from someplace else to create Peyronie's plaques because that is what it is programmed to do. It doesn't matter how much you raise or lower collagen production, it is not going to affect the course of your Peyronie's significantly. That said, I think that whey shakes are quite harmless and usually very healthy. I don't drink them personally, but do use whey in my diet. Ditto for Lysine. I don't recommend that Peyronie's sufferers use Lysine, but I don't consider it particularly harmful either. So if you happen to have cold sores, Lysine is a good treatment and is not likely to make your Peyronie's significantly worse.
The number one most powerful vectors oral treatment wise for Peyronie's remain Pentox and Vitamin D in my book. I highly recommend both. I also highly recommend the advice and vast trove of information available on these websites: Dash Diet (http://www.dashdiet.org), Real Age (http://www.realage.com), and Jorge Cruise (http://www.jorgecruise.com). The Dash Diet site is run by a highly acclaimed nutritionist and features a top notch resource book entitled "The Dash Diet Action Plan". The Real Age site is run by a team of acclaimed doctors and features a wide array of interactive resources plus a several publications in the "YOU" series that really help you understand how your body works on the inside. The Jorge Cruise site is run by an acclaimed fitness guru and trainer and features a free download diet guide along with lots of other useful resources. Diet and exercise can pack a powerful punch when it comes to getting the upper hand with Peyronie's and related issues. - George
Quote from: George999 on January 04, 2009, 12:21:13 PM
It doesn't matter how much you raise or lower collagen production, it is not going to affect the course of your Peyronie's significantly. That said, I think that whey shakes are quite harmless and usually very healthy. I don't drink them personally, but do use whey in my diet. Ditto for Lysine. I don't recommend that Peyronie's sufferers use Lysine, but I don't consider it particularly harmful either. So if you happen to have cold sores, Lysine is a good treatment and is not likely to make your Peyronie's significantly worse.
I still find it very curious that whey causes the immediate and obvious reaction I described. Lysine is an essential amino acid, so it's needed for life and can't be cut out entirely. Lowering intake might not be a bad idea though. From this site (http://www.vitamins-supplements.org/amino-acids/lysine.php):
QuoteLysine is involved in the browning reaction, or carmelization, in foods such as pastries, doughnuts, cookies and cereals. Lysine is dependent upon riboflavin, niacin, and vitamin B6 for its assimilation. Using iron and vitamin C, lysine helps form collagen.
The browning reaction is of course undesirable, and glycation is involved with Peyronie's.
slowandsteady
Note that the same site says that Lysine is "safe and non-toxic". And it says nothing at all about the Maillard or browning reaction within the body which is a whole different process than what occurs during cooking. Here again, it is not the ingredients in the reaction we should be concerned about, but the failure of the body's controls. Normally the body has systems in place to prevent glycation and the inappropriate accumulation of collagen. Those are the areas we need to be addressing. As for the reaction you are experiencing with the whey, do you really think this represents collagen accumulation? Detectable collagen accumulation takes place over a period of months, not hours or days. So I don't know what is happening with your plaques, but I doubt if it represents sudden collagen accumulation. But, granted, it could represent a momentary mild pro-inflammatory response, and so that would mean it should probably be avoided. But I wouldn't be hugely concerned about it if it were not causing a significant effect. - George
Sorry to be gross but I suspect vit. E is causing me an unpleasant side effect. I'm experiencing anal leakage. I did bring this to my doctors attention but he said things looked ok and he could not find anything wrong. Of course the symptoms go away when I need a professional opinion! I've laid off the E,L-carnithine and Arginine and leakage is reduced. I was using 400 iu gamma E, 2000 acetyl carnithine and 1000 arginine. I am continuing with D, K, and low dose cialis.
Has anyone else experienced this side effect?
For years I struggled with anal leakage. The one thing that virtually cured it for me was getting rid of refined carbs and sugars from my diet. - George
Thanks again George!
Ok since nobody else has asked I will. Earlier today George said -
QuoteStraight Horny Goat weed would be best, but it can be difficult to source.
Has anyone found some?
I don't like putting anything in me I don't need. Agreed, I'd rather avoid Yohimbe, (and Ginseng which I'm sensitive too - similar to caffeine for me). I've tried Maca and I'm not crazy about that either, although it wasn't awful for my system.
Thin Man
Horny Goat Weed with maca as the only other ingredient. http://www.puritan.com/herb-products-f-to-m-035/horny-goat-weed-with-maca-capsules-epimedium-007321
I will be shocked if you beat this price and Puritan Pride has a good reputation for purity and potency. They are my preferred supplier of supplements although I go elsewhere for things they do not handle.
Pure, unadulterated HGW. There are several brands around which I would NOT recommend. The one that I know of that I can recommend is Natures Way (http://www.iherb.com/ProductDetails.aspx?pid=4542), I have found their products to be dependable and of high quality. - George
Quote from: slowandsteady on January 04, 2009, 10:24:37 AM
I also noticed that, when I drink a whey protein shake, my active plaque regions get hard. I made one at 4 pm yesterday and they were hard until I went to bed, only this morning becoming softer.
S&S,
I am with George in my non-professional opinion. First, I will never buy that collagen synthesis is occurring in days much less minutes or hours. I am sure something else is going on with your observations. Next, I do not believe a person can even hope to fight collagen production systemically since it is the essence of all we are (ligament, tendon, skin, scar, bone etc). To reduce collagen production body-wide to prevent deposits in a small spot on a relatively tiny organ is impossible. It would be akin to trying to eliminate water from our body because our eyes water, or injecting Xiaflex systemically to breakdown collagen. If we have enough collagen to maintain life and health, the body will have way more than enough to direct the wrong type to the penis unless we disrupt the process through some other channel.
There are well over a dozen types of collagen. Without collagen we would have no penis. The question is why does our body deposit that type of collagen when it is not needed to repair a wound. and how do we stop that specific response or thwart that process.
Quote from: Hawk on January 04, 2009, 08:08:23 PM
First, I will never buy that collagen synthesis is occurring in days much less minutes or hours. I am sure something else is going on with your observations.
I don't think so either. I think that it is some type of inflammatory response. For a while I was taking resveratrol mixed with whey and thought that the response was due to the resveratrol, but I now see that the whey alone will do it.
My question is whether the inflammatory response can be a kind of first step. For example, the left side of my penis used to have an inflammatory lump, but it resolved to an area of constriction.
slowandsteady
George and Hawk, thanks so much for the HGW recommendations.
George, thanks for helping us all benefit from your experience with Vita E. Just to be clear, yesterday you stated -
Quote from: George999 on January 04, 2009, 12:21:13 PM
The problem is that Gamma Tocopherol, especially, is actually pro-inflammatory. Somehow that seems to work out OK when taken in combination with sufficient Alpha Tocopherol, but I would caution at this point against taking it in isolation. I doubt if it would be a significant factor with Peyronie's, but I consider the 400IU/300mg approach to be the more effective method with E.
And....
QuoteIf the higher gamma Jarrow products works for you, that is fine. But if you have any indication of increased inflammation, Peyronie's or otherwise, I would quit it and go back to the 400IU/300mg type products.
I have no idea what will work for me. I'd rather play it safe, but what I found at the store is a wee bit different than the products you describe. Until I can find something better I guess I'll go with Now Foods Tru-E - 200IU (which is 135mg... I think) Alpha/ 200mg Gamma. If I take two a day that makes it 400IU (270mg) Alpha /400mg Gamma. Is this too much Gamma?
The Alpha in IU is deceptive - Correct me if I'm wrong but yours is actually 400IU (270mg... I think) Alpha/300mg Gamma - still slightly more Gamma but this is what you're after, right?
Also, do you think there's any advantage in taking two smaller does per day (a possibility with this product) rather than one large one?
But if this is too much Gamma, or too high a proportion of Gamma to Alpha, forget it.
Thin Man
I have not been using any Vitamin E at all now for a month or two. Right now, I am planning to start using Vitamin E again. It will be NOW Foods Advanced Gamma E Complex. This one has the 400IU/300mg ratio and has worked well for me in the past. I think that as I recall, the NOW Foods Tru-E product is a good choice as well. I have not used it because it is significantly pricier than the other product. I wouldn't worry at this point about the little extra Gamma content. Its not life or death. The major reason for the use of "IU" or International Units rather than mg in the designations is to accommodate synthetic forms. Synthetic forms of vitamins, among other things, differ in their measured effectiveness from natural forms. Therefore 1IU of synthetic E does not equal 1IU of natural E in terms of mg. Its an attempt at an approximate comparison. However there are other factors involved here that make synthetic forms a poor choice when it comes to vitamins. So I NEVER recommend synthetic vitamins. As for divided doses, if I were using 200IU pills, I would probably divide them, rather than taking both pills at the same time. - George
Regarding Whey, if it seems to be inflaming your plaques at this point, I wouldn't use it, period. Forget trying to figure out all of the collagen stuff, just don't use it if it causes apparent inflammatory response. That goes for anything else as well. And I can tell you that I have quit things in the past that caused inflammatory response and now I am using them again because now they no longer are having that effect. But the most important things you can do regarding inflammatory response is to be taking Pentox and Vitamin D. These both strike at the very root of the problem. And of course things like VED are also useful, I believe, in controlling inflammation, but discussion of those modalities belongs in another thread. But Pentox, Vitamin D, and getting rid of as much inflammatory omental fat as possible through diet and exercise is extremely important if you ever want to get the upper hand on Peyronie's. So it IS important to cover all the bases, but it is also important to avoid straining at gnats. - George
Possible sources of HGW:
http://www.iherb.com/ProductDetails.aspx?pid=1561&at=0
This has a larger than average dose at 1200 mg and a fair price (about $15 for 60 1200 mg capsules)
A standard value in a store like Whole foods would be closer to $20 for 60 capsules at 500 mg (per two caps). This seems worth a try. I am not sure, though, if this is a brand that George would advise against - I have no experience with this particular brand, but find iHerb a good source of quality vitamins and supplements in general.
*******************
http://www.puritan.com/herb-products-f-to-m-035/horny-goat-weed-with-maca-capsules-epimedium-007321?searchterm=horny%20goat%20weed&rdcnt=1
This is a more stadard "good deal" for this product. It has 500 mg per two capsules, and 60 capsules and it is mixed with Maca. As usual, Puritan's Pride gives you two for one on this product, making it effectively 7.50 per bottle. The dose is lower than the first one though. I used this with good success myself for a long time.
Tim
Tim,
Would it be safe to use Pentox, vitamin d-3, vitamin e and L-Arginine as a treatment or if I am using Pentox should I skip the L-Arginine.
Thanks,
Jayhawk
Safe to use all of them. I stopped my l-arginine when I ran out, but continue on E, D and Cialis. I have not started Pentox yet.
Tim
Quote from: George999 on January 05, 2009, 12:01:46 PM
But Pentox, Vitamin D, and getting rid of as much inflammatory omental fat as possible through diet and exercise is extremely important if you ever want to get the upper hand on Peyronie's. So it IS important to cover all the bases, but it is also important to avoid straining at gnats. - George
In addition to those, pycnogenol also looks interesting to me. In patients with osteoarthritis, it provided
both "decrease of systemic inflammatory markers" and fibrinogen levels (PMID 19017467 (http://pubmed.gov/19017467)):
QuotePlasma CRP levels decreased from baseline 3.9 mg/l to 1.1 mg/l in the Pycnogenol group whereas the control group had initial values of 3.9 mg/l which decreased to 3.6 mg/l. The CRP decrease in the Pycnogenol was statistical significant as compared to the control group (P < 0.05). Fibrinogen levels were found to be lowered to 62.8% of initial values (P < 0.05) in response to Pycnogenol.
Fibrinogen (http://en.wikipedia.org/wiki/Fibrinogen) is a component of fibrin and involved with Peyronie's
R (http://www.nature.com/ijir/journal/v14/n5/full/3900875a.html). Sounds like a 2-fer.
slowandsteady
Tim, I would NOT recommend the Planetary Herbals brand because I simply do not trust their purity. A leading independent testing lab found significant quantities of lead in a similar product some time back and I would avoid this formulation. - George
I have taken pycnogenol in the past and believe it to be helpful for Peyronie's. I have taken it myself in the past. It is a good and useful supplement. But its effectiveness pales in comparison to Pentox and Vitamin D. That is my experience thus far. The "ride" I am getting from the Pentox and Vitamin D combination is unequal to anything else I have yet experienced. - George
is there any negative effect from combining Vitamin D and Pentox
Quote from: Hitman on January 05, 2009, 09:01:52 PM
is there any negative effect from combining Vitamin D and Pentox
If there is, I certainly haven't noticed it. - George
Thanks again George,
While we're on the subject of Vitamin D -
My blood test says Vit D (25 OH). My doc tell me this is low and about a month ago prescribed me 50,000 IU of Vita D per week for 8 weeks. I have not taken it yet since I completely forgot during the upset with my new injury. I went through this same treatment last year with no problem - so it should be ok for me otherwise. I was supposed to have followed this up with more, but again, forgot. Anyway, I'll check with the doc again, but to your knowledge is there any reason not to go ahead with this high a dose of Vita D as far as other potential complications with Peyronies Disease?
It occurs to me it might be more prudent/effective to have a daily dose rather than a weekly dose to avoid potential interactions with all this other stuff I've just started on, so I just started taking 4000 IU daily of D3.
Also not long ago there was a discussion about Vita D and calcium.
Quote from: George999 on October 21, 2008, 10:57:25 PM
The thing with Vitamin D is that lots of it causes calcium to be absorbed super efficiently by the body and *can* cause levels of calcium in the blood to climb too high. This is why doctors typically monitor blood calcium levels every few months in the case of people taking large amounts of Vitamin D. But 10,000 IU or less daily rarely causes a problem. HOWEVER, I would not take this amount of Vitamin D and also take stuff like calcium supplements UNLESS prescribed by your doctor.
Does this mean I should stop taking my daily multi vitamin that has 100 mg of calcium?
For that matter I've been looking into time released Vitamin C - it seems the higher the time release the more calcium. Today I found two different 1000mg Vita C's - the 8 hour has 25 mg of calcium phosphate whereas the 24 hour has 110 mg of calcium. Actually I'm finding many vitamins have a small amount of calcium - Vita D, Vita K. This could add up. Are these small amounts of calcium too low to be of concern?
In the above discussion you also mentioned -
QuoteAdditionally, I would take some Vitamin K along with the Vitamin D. The Vitamin K will prevent calcification of soft tissues by driving any excess calcium into the bone where it belongs. - George
Any dosage recommendations for Vita K?
Ever grateful ever hopeful,
Thin Man
Let me suggest that since you go to a doctor that you actually follow the doctor's recommendation. Unless of course you have no trust or respect for his professionalism in which case you need another doctor. Vitamin D is not a water soluble vitamin that gets flushed from your system daily so there is no reason not to follow what your doctor told you to do. He seems to recognize the need to raise your D levels and he is monitoring the level. I also assume he knows what else you are taking. If not, you have not trusted him and done your part which is to supply him with the information he needs.
On the subject of vitamin C and calcium, a recommended daily intake of calcium from all sources is at least 1000 mg. You are nowhere in the ball park if you only have 100 mg in a multi so the tiny amounts in the Vit C tab are of no consequence.
Thin Man, Just for the record, I agree with Hawk on this. As for Vitamin K, I would recommend either a typical K-2 (MK7) pill or a typical K-1 pill once per day. You can't get too much of it at this level AND it will not interact with the other stuff UNLESS - IF YOU ARE TAKING ANY KIND OF PRESCRIBED BLOOD THINNER LIKE COUMADIN OR PLAVIX OR EVEN A DAILY ASPERIN THAT THE DOC HAS INSTRUCTED YOU TO TAKE, CHECK WITH THE DOC BEFORE TAKING K. - George
I'd like to come back to this concern of mine with dietary lysine and the way the body processes it.
From the study "Effect of diabetes and aging on carboxymethyllysine levels in human urine" (PMID 1899406 (http://pubmed.gov/1899406)),
QuoteCarboxymethyllysine (CML) has been identified as a modified amino acid that accumulates with age in human lens proteins and collagen.
I don't know if there are conditions in which dietary lysine can be quickly converted to CML. Perhaps CML plays a more central role in Peyronie's than thought (just one of my hypotheses).
slowandsteady
CML is a product of a similar process to glycation. It is caused, not by lysine, but by the body doing the wrong thing with Lysine. This happens when people have metabolic anomalies that result in diabetes. It also happens as people age and their DNA gets progressively damaged. The problem now is that more and more younger, non-diabetic people are exhibiting these problems. I maintain that this has to do with environmental influences like not enough exercise, unhealthy diet, and insufficient vitamin D. But however you cut it, the problem is caused by metabolic dysfunction, not by excessive lysine. In fact sometimes just the opposite is true. Consider situations were people retain water. The problem is not water, and the solution is not to stop drinking water. In fact the solution is to drink more water and flush out the sodium, which will then result in the excess water being released from the body. My point is that you have to see beyond just what is happening with the lysine. The problem is a major metabolic dysfunction and there is no evidence at all that it is caused or even promoted by an excessive amount of lysine. Lysine is just an innocent bystander that gets sucked up into an insidious process. - George
Thanks so much Hawk and George,
My doc is generally very knowledgeable and a nice guy too, but when I asked him to prescribe me Pentox he refused saying he didn't know anything about it - so we had a bit of tension there considering it took me three weeks to find someone to prescribe me Pentox. I'm finding that even most urologists I've talked with are absolutely no help with Peyronies Disease. Therefore I asked...
Quote from: Thin Man on January 06, 2009, 05:03:55 AM
to your knowledge is there any reason not to go ahead with this high a dose of Vita D as far as other potential complications with Peyronies Disease?
I'm so glad to know this shouldn't be a problem for Peyronies Disease (so far as we know). I was a bit concerned about the possible problems with elevated calcium, but the doc thinks it's ok for me and... from reading this thread I see ingesting calcium has nothing to do with calcification of penile plaques (so far as we know) correct?
Like I said before, I'll check with the doc again - he's in the loop and I trust him.
However, neither he nor the uros I've talked with so far have much to say about the supplements I'm now taking - L-Arginine, ALC, Bromelain, Fish Oil, HGW (thanks to you guys), possibly Natto, and (if my naturopath has his way) large doses of Paba. OK, probably nobody knows what the possible interactions between all this stuff might be, as well as Pentox and high doses of Vitamin D. But... assuming I'm in good health (I am - I take no other prescriptions) do you have any other words of warning on taking all these items together?
Oh yes, my Acupuncturist (but nobody else so far) suggests I take a baby aspirin a day (for Peyronies Disease, no other reason). Do see any reason I should throw this into the soup?
George, from your comment yesterday I take it that's not a good idea if I'm taking Vitamin K.
QuoteIF YOU ARE TAKING ANY KIND OF PRESCRIBED BLOOD THINNER LIKE COUMADIN OR PLAVIX OR EVEN A DAILY ASPERIN THAT THE DOC HAS INSTRUCTED YOU TO TAKE, CHECK WITH THE DOC BEFORE TAKING K.
Is even a baby aspirin potentially too much aspirin to go with Vita K?
It seems impossible to find anyone who can help me put the entire picture together. I can't thank you both enough (and everyone else too) for your feedback.
Thin Man
Quote from: Thin Man on January 06, 2009, 09:35:09 PMI was a bit concerned about the possible problems with elevated calcium, but the doc thinks it's ok for me and... from reading this thread I see ingesting calcium has nothing to do with calcification of penile plaques (so far as we know) correct?
The concern about Vitamin D and elevated calcium has nothing to do with Peyronies. It has more to do with the fact that 2% of people have preexisting issues that cause their serum calcium to rise dangerously when they take Vitamin D. This DOES NOT occur with most people EVEN when they take massive doses of Vitamin D. In any case, your doctor should be aware of this risk and be dealing with it for you. So follow your doctor's instructions with the Vitamin D. Personally, I prefer not to take chances and therefore do not take large doses of calcium while taking large doses of Vitamin D, but the trivial amount of calcium found in food and other stuff like Vitamin C are NOT a concern. And you are right, potential Peyronies calcification has nothing to do with the amount of calcium you are ingesting in the food chain. It is caused by metabolic issues, nothing else.
Quote from: Thin Man on January 06, 2009, 09:35:09 PMHowever, neither he nor the uros I've talked with so far have much to say about the supplements I'm now taking - L-Arginine, ALC, Bromelain, Fish Oil, HGW (thanks to you guys), possibly Natto, and (if my naturopath has his way) large doses of Paba. OK, probably nobody knows what the possible interactions between all this stuff might be, as well as Pentox and high doses of Vitamin D. But... assuming I'm in good health (I am - I take no other prescriptions) do you have any other words of warning on taking all these items together?
Obviously the more stuff you pile on the more opportunity for interactions. One potential issue I see here is that Pentox, Fish Oil, Natto AND Aspirin (which you mention later) are ALL blood thinners. That is, they all promote bleeding, albeit in different ways. So I would be cautious on these and just take what you really need to take.
Quote from: Thin Man on January 06, 2009, 09:35:09 PMOh yes, my Acupuncturist (but nobody else so far) suggests I take a baby aspirin a day (for Peyronies Disease, no other reason). Do see any reason I should throw this into the soup?
Aspirin will NOT help you at all with your Peyronie's so if that is the only reason to take it, don't. You are just piling on another blood thinner. Its not worth it. I would keep the Pentox and Fish Oil and drop the Natto and Aspirin for now. Everything else looks unlikely to cause a problem, but I am not a doctor and most doctors probably wouldn't know. A lot of potential interactions are simply still undiscovered. But I would personally feel safe taking the rest.
Quote from: Thin Man on January 06, 2009, 09:35:09 PMGeorge, from your comment yesterday I take it that's not a good idea if I'm taking Vitamin K.
QuoteIF YOU ARE TAKING ANY KIND OF PRESCRIBED BLOOD THINNER LIKE COUMADIN OR PLAVIX OR EVEN A DAILY ASPERIN THAT THE DOC HAS INSTRUCTED YOU TO TAKE, CHECK WITH THE DOC BEFORE TAKING K.
Thin Man read what I said again. I didn't say it was a bad idea, I said you need to talk to your doctor first. Thats because if you are taking any of the above for a cardiovascular condition Vitamin K can render them ineffective. If you are not dealing with a cardiovascular condition that presents a clotting risk, you should have no problem with Vitamin K which will help to drive the calcium out of the soft tissue and into the bone where it belongs.
Quote from: Thin Man on January 06, 2009, 09:35:09 PMIs even a baby aspirin potentially too much aspirin to go with Vita K?
Forget the aspirin!
- George
Thanks a million George.
I'm going to run everything by the doc again to be sure he's ok with this.
To be clear I'm just asking you for your opinions based on your experience, I'm not asking you (nor anyone else here) to be my doctor.
Cheers,
Thin Man
Husband has had Peyronnies for 4 yrs now, Doc said 75 degree bend, but I am not sure it is THAT bad, we have no problem with sex, he just has low testosterone levels, so the Libito is lacking. He does not need Cialis or Viagra if he is in the mood. This website scared the daylights out of me seeing as this can "get worse" over time, (for him, it has remained the same for 4 yrs now) so I will do just about anything to keep that from happening--so please understand all of my questions. We did manage to get our Urologist to perscribe Pentox (if anyone interested, I can send a sample letter of what I faxed to my Urologist (thanks to this message board) who immediately wrote me a perscription for the drug, no questions asked). Here is the List of Vitamins /Supplements / Herbs I have him taking , plus doing the VED 3 cylinder every day for 10 minutes.
Pentox (Trental) 3 times a day for 1st month, then 2 times a day for 1 year
GNC Mega Man multi (2 a day)
GNC "ArginMax" (L-arginine 3000mg)--supports sexual health (6 a day)
GNC Isomer E 400iu -Supplies 8 tocopherols & tocotriencos (1 a day)
Puritans Pride -Horney Goat weed with Maca - (2 a day)
(1) Fish Oil 1200mg
(2) Natural Vitamin 500 mg (cheap brand from Walmart)
Sometimes Garlic
(1) 10mg simivestan for Cholesterol (every night or every other day)
....Now adding TongKat Ali Herb to the mix to supposably help raise his low Testosterone Free & regular levels (will be trying 2 or 3 a day of this, depending on results) --they are 1:50 Extract @400 milligrams. I was thinking of getting this SAN VASO FLOW instead of the GNC "ArginMax" soon, I get confused when I read about it though, it talks about "Stacking" and all this muscle building stuff. What is stacking? How many of these do you men take a day-- it sounds like 6 or even 12 is Ok to take in 1 day!!! And should I also add Acetyl L-carnitine and if so, at what dosage ?? Thanks to all. And when he goes back to Encronologist for appointment (went because of Low normal testosterone levels), I will be asking about testing for Vit D if she is willing to do that. Not sure I want to add that Unless I know he is deficient, he does work outside 5 days a week, in and out all day, so he gets the sun , he eats yogurt and drinks milk every day. Appreciate all the advice on here.
Your forum name says it all! Your husband is a very lucky man.
Good luck to you both
Just a couple of comments here, looks like you have some good stuff going!
1) Be careful of supplements from WalMart, I have read some things about their supps that would lead me to not buy supps from them. GNC and Puritans Pride are a much better sources.
2) If he is taking a statin, he should also be taking Coenzyme Q10. This is because statins that block cholesterol production in the liver also inhibit the body from creating CoQ10. I consider this to be detremental to good health and recommend a CoQ10 supp to any one on statins. It can prevent future heart failure. It is quite expensive. It is only manufactured by Japanese Pharmaceutical companies. It is used as a prescription med in Japan. The best place to buy it is Costco, but it is safe to buy from anywhere because there is really only one source and that source is safe. I can PM you documentation on this issue if you need it.
3) With SANN VasoFlow, three per day worked just fine for me. The stacking (adding other specific supplements) and large dosages are geared toward body building which is not what he is using it for. Therefore they don't apply. Three spaced out through the day would seem logical to me. He can use more or less as needed, no problem. But I certainly would not be using the amount recommended for body builders, that would be a huge overkill.
4) ALC is a good supp for Peyronies with some evidence of effectiveness. I suspect most of us take 1.5 to 3 grams a day.
5) The endocrine doc is EXACTLY the guy to investigate the Vitamin D issue. DO take the documentation with you as he might not be aware that the experts are now recommending 50ng/ml instead of 30ng/ml as the optimal level. Also note that working outside is not necessarily a guarantee of Vitamin D sufficiency. If you live in the southern US, it probably is. But if you live in the northern part of the country, you have six months of the year during winter that you can be exposed to full sun all day and not get any vitamin D. That is because during the winter only UVA gets through the atmosphere, no Vitamin D generating UVB makes it through.
- George
George999 - quick question...how long should I be on trental for?? - ive been using it for 10 months now - will this be a lifelong thing??
,many thx
Accually, I did forget to mention the CoQ10 I also give him every time he takes a Simivestan tablet. So I do have that covered. It's the Q-sorb C0-Q-10 120 mg from Purtitans Pride. I also was wondering how long a man should take the Pentox? how many Docs write another perscription after a years taking--and should they? Wondering if the Body becomes addicted to Pentox in any way, IF any new effects show up when it is stopped? I did read somewhere it makes you more vulnerable to infections, suppresses the immune system some. Speaking of Acetyl L-Carnitine, I should know this, but how many milligrams make a Gram --1,000? I see Puritans Pride sells 250mg and 1000mg's. Which should I buy? Thanks to all
As for Pentox, I think it is a relatively long term thing like a blood pressure or cholesterol med. The danger of stopping is that the problem is basically caused by immune system function and once you release that, you can end up with the same problem all over again. This is probably the major drawback of this approach to treatment. The good thing is that most people tolerate Pentox over a long term with no problems. I does indeed result in some degree of immune suppression, but so do a lot of other very useful drugs. One reason I am pushing so hard on Vitamin D is that it *might* just be the combination that can eventually get at least some of us off of Pentox. That is because Vitamin D also addresses and corrects certain immune system anomalies over a period of time. Many of the benefits of Vitamin D are believed to take five years to show up. But that is fine with me. I am willing to wait and hope for the best and recommend the same approach to others. If the Vitamin D and Pentox combination can wipe out Peyronie's over a period of years which *might* be possible, given what researchers now know about Vitamin D, that would be cool. Also, the longer we can keep Peyronie's in check with Pentox, the more likely it will be that new and more effective treatments will appear. In the mean time, Vitamin D will contribute greatly to one's overall health if they are deficient.
PS: 1g = 1000mg
- George
Wow, that has been one of my concerns with Pentox. George, if someone stops taking it are we talking about a backlash that happens slowly or quickly? - or is this just unknown? I've been struggling with dizziness due to Pentox. Initially I took 800mg a day for only about one week and then stopped. Within about 10 days my scarring got worse and my erectile functioning got worse. Hopefully this is too short time period for anything really bad to have happened (due to stopping the Pentox) but I've been wondering. It could be I would have got worse anyway.
Other less likely possible causes I've been wondering about were 1) I also started taking Paba at exactly the same time I stopped the Pentox (worked up to about 9 grams a day - although I stopped this later when I tried Pentox again) 2) I also began taking Bromelain at exactly this time (about 3-4 grams a day) and... 3) On the advice of two practitioners I gave a break to all sexual activity starting at this time (abstained for 10 days) This seems to me a likely cause of worsening ED since I have arterial blockages from two accidents. My nighttime erections are rarely fully rigid. Hopefully the "lose it or use it" scenario doesn't apply for such a short time period (10 days), but I'm probably more at risk for worsening ED than many Peyronies Disease sufferers. I'm hoping some of this is just nerves, but I'm pretty sure something's changed for the worse.
Sorry to laundry list all this stuff at once, but all of this coincided. Seems to me all this together was bad timing.
In the last week I've tried Pentox again, on average every other day, just one tab. It's still giving me mild but persistent dizziness. I don't want to completely give up just yet, but do you think I might be harming myself with this level of infrequency? Or if I stop and start again? Obviously it's better to stick with any treatment as prescribed. I'm frustrated there's not a lower dose available.
Many thanks,
Thin Man
I was under the assumption that Pentox was for 1 year (tops) used with VED to hopefully bring some curvature to a lesser degree. I really dont' want my husband taking this for the rest of his life---it is causing him constipation. And we know it is from the Pentox as it started at the same time. For the last 4 years, his has not gotten worse (without any special vitamins or drugs), to think that starting this , then stopping it can make things worse is very very frightening to me. Not sure what to do now.
For many of us, the sue of Pentox should allow reversal of a disease process that may NOT be progressive, but represent the result of a deranged immunologic response. The fact that surgery fixes some men's Peyronie's Disease without recurrence demonstrates that this is a fact.
So, for some of us, with a problem that has appeared and is stable and with a bend, Pentox may lead to an improvement, and when it is stopped, there should be no backsliding or worsening.
For those with "progressive" disease, and by that I mean chronically active disease, then Pentox may allow us to hold our ground without getting worse, or help us improve (or do nothing), and - for that group - it may be that stopping it leads to worsening.
This goes back to the multifactoral causes of the same clinical condition, Peyronie's Disease". Trauma, immunologic derangement, excessive glycation due to diabetes, poor blood flow due to cardiovascular disease, or a chronic inflammatory state due to vitamin/mineral deficiencies are all potential causes of this same clinical presentation. We have said it again and again here - there will not be a silver bullet for Peyronie's Disease. What I hope for is an increased ability for the urologic ommunity to learn how to determine our biochemical individuality, and tailor therapy to our individual needs - and have it help us!
Tim
Pentox DOES suppress immune system function and coming off of Pentox could cause a "backlash". But you have to remember that countless things from day to day affect our immune systems. ANYONE with Peyronie's, active OR stable is sitting on a time bomb. It can reactivate at any time for whatever reason the same way it started in the first place. And the more you can reverse it with Pentox, the less the chance of it reactivating. With Vitamin D being a huge factor, everyone who is taking Pentox should have their Vitamin D levels verified at 50ng/ml. Optimal levels of Vitamin D increase immune response while at the same time decreasing autoimmune response. Thus fixing Vitamin D levels will both mitigate the autoimmune causes of Peyronie's itself AND mitigate the immune suppression qualities of Pentox. Not a bad deal. For those sensitive to Pentox who simply can't live with the side effects, I recommend trying Potaba. Potaba is expensive and hard to take. But it is more targeted and likely more effective than PABA. And if one gets their Vitamin D issues in order at the same time, Potaba might become significantly more effective. I don't recall ever seeing a one year limit on taking Pentox. In fact, I seem to recall some mention of more than five years from some of Dr. Lue's papers. Perhaps Tim can add some insight to this. - George
Ok, so is this how I should look at this sitatution & to the future with Pentox.... GIve it a good trial run for a year, make sure I ease him off of it slowly -get down to 1 a day, 1 every other day nearing the end. And IF "anything" starts waning (loss of morning erections, more bending, etc), getting worse AFTER this Pentox trial, then start it again to manage it. But at this point, seeing what Tim has said, maybe not everyone will need this Long term, but always be prepared and ready to start it again at any time--if necessary.
In searching for Potaba on this thread I found this.
Quote from: JW on November 16, 2006, 06:46:50 AMPersonally, if you try potaba, make sure to go with the powder, not the pills. The pills made me nauseas 100% of the time, whereas the dissolved powder just tastes bad.
Would anyone else care to weigh in on this before I ask for a prescription?
My pharmacist tells me Potaba powder is only available as a generic, should that make any difference?
Any other pro or cons to Potaba powder vs. pills?
Thanks so much,
Thin Man
Thin Man
In 1995 I took potaba powder for about 18 months. I also took 400IU of Vitamin E 3 times a day from 1995 to 2006. My curve corrected in about 18 months but left me with about 25% penile length loss. If I knew then what I know now I would have been on Old Man's VED exercise from the start to prevent penile loss.
The only thing I can say is potaba taste bad but you will kinda get use to it. Mix in COLD water. The generic should be just fine IMHO.
Jackp
I took Potaba pills for about six months. All I got out of it was gastric distress.
I am worried about using pentoxyfilline (trental)
It has been advised by 3-4 ppl on this board, but I can not find any good results on it on the web.
The results are in the same line as other methods used, like verapamil or colchicine etc: improvement similar to the control group.
Some links were given 1) a document where 1 man is followed for a long time and he has improvement on just 1 of his scars.. 2) an article written by someone, some typo's here and there, where it is stated Dr. Levine uses it and then that's that.
So, it appears to have antifibrotic activity. But I can not find much results on it.
I wouldnt mind trying it if I were sure it wouldnt harm me.
But it is a blood thinner. I believe that my peyronies being formed has somethign to do with bleeding.. was like I felt somethign bleeding under the skin at some point, then later a peyronies plaque was formed there. So I am scared of using anythign that might make the blood thinner.
Hi all,
Since Pentox is the topic of the moment here, I have a question about its safety as well. I began taking it in October 2007. Within two months, I began experiencing strange "popping" sounds near the area of my sternoclavicular joint (near the breastbone). I first thought that I might have pulled a tendon due to wearing my bookbag on my right shoulder, on one strap. I continued Pentox and eventually began wearing my bookbag on the other shoulder. However, my right shoulder never healed. Eventually, I began experiencing pain at times, around the breastbone, and the popping sounds worsened. I got off Pentox for 5 months and nothing improved, nor worsened. Nothing, except for my Peyronies Disease that is. So I got back on Pentox and the popping and pain began to worsen again.
I think there is some correlation between Pentox and the condition I have now. Currently, my shoulder is a mess. The MRI did not show a tear but there is clearly trouble as I can't lift anything heavy and experience constant pain and popping, almost grating noise. My hip started to hurt as well with my recent decision to re-start Pentox.
I'm in a tight spot - Pentox clearly makes the Peyronies Disease better. I experience less pain and it just generally "feels good." But as far as my overall health, Pentox seems to be causing it to decline.
I'm 23 by the way, and have always been healthy before Peyronies Disease, and have no other diseases.
I wonder if anyone heard of such side-effects...
Believer
Believer,
As for your shoulder, you may have adhesive capsulitis (commonly known as "frozen shoulder"). It pretty much incapacitates your shoulder, limiting it's range of movement and causing intense pain. I got it in July 2007; it just happened, one day fine, next morning when I woke up I could not put my arm over my head. Then in September 2007, the Peyronie's monster came to me as well; again one day fine, the next day upward curve and left lean. I have read something (I can't remember where), about some drug that was going to be used to treat Peyronie's, Depuytren's, and adhesive capsulitis. Some I'm thinking there is some connection between adhesive cap. and Peyronie's. Fortunately, adhesive cap. goes away, but it takes about a year or two. And there is really nothing that can be done for it.
A lot those with Peyronies Disease have reported also having Depuytren's. There is a know increased incidence and a commonality between these disorders. Like wise many have reported frozen shoulder. I am not certain the relation with frozen shoulder and Peyronies Disease is as clear but there is at the very least a suspected connection.
Pentox effectively controls Peyronie's, but it is NOT "safe" in the absolute sense. No drug is "safe" in the absolute sense. Even common foods are not "safe" in the absolute sense. You develop a sudden allergic reaction to specific common foods and people die from these reactions. In a relative sense, Pentox is among the safest of drugs. Side effects are rare and usually mild. But if anyone wants guaranteed safety, they should do absolutely nothing and simply allow their Peyronie's to progress, which is what it is likely to do. Its a choice. Most of us who have been around awhile have discovered that when it comes to health problems there are often no good choices. There are better choices, but no good choices. Life is tough in that regard. Life has risks. Personally, if I think something like Pentox might help me, I give it a shot. If it turns out that the price is too high, I drop it and try something else. AND, I also think that depending on ONE solution like Pentox is a mistake as well. Pentox is an intervention dealing with a metabolic malfunction. You have to also address and try to FIX the malfunction that caused Peyronie's in the first place. - George
All,
Thanks for the replies. I am 100% certain that I do not have Frozen Shoulder. It's a tendon microtear/tendinitis/bursitis at best. Nor do I have Dup's Contracture. However I am scared of developing it and would be glad to know of any preventative measures that can be taken to prevent DC. I do have a suspicion however, that Pentox may possibly weaken tendons or cause poor healing of tendon tears.
It would be nice to have a separate thread of any reported side-effects that people experienced and can attribute to the use of Pentox, as it is probably the best and most common drug that we use to fight Peyronies Disease.
Best,
Believer
A topic here on side effects would be of little use because Pentox is an established well documented drug. All known side-effects are listed on an insert with the drug. You can rest assured this cover even rare side effects. I do not think that the condition you describe is a listed side effect.
Just a quick note on this: "Fortunately, adhesive cap. goes away, but it takes about a year or two. And there is really nothing that can be done for it."
My experience anyway: I had adhesive capsulitis about 7 or 8 years ago. I saw an excellent physical therapist, who put me on a program of stretching and exercise. He also did some intensive stretching of my shoulder to release the fascia, if I recall right. The result was that I recovered at least 95% or the lost range of motion, in a matter of weeks, and still retain it today, even though I do just minimal stretching for it nowadays.
Based on my experience, if you have frozen shoulder, I wouldn't just wait for it to get better - a good P.T. should be able to help.
Metabolic issues are at the very root of Peyronie's and those SAME metabolic issues can cause a number of other diseases and syndromes. Pentox may help some of those maladies (like Peyronie's) and at the same time may possibly aggravate others. When you start to look at the number of problems that vitamin D deficiency can cause as revealed by recent research, it is truly mind boggling. If I were having problems like Believer, I would certainly get my vitamin D levels tested. The vitamin D council makes that easy for anyone as long as they don't live in the state of New York. Just go to their website at http://www.vitamindcouncil.org and snoop around. They can get anyone a do it yourself vitamin D test for $64. They can also point you to a local test provider and if you live anywhere in the US except the state of New York, you can get it without and physician lab slip. Vitamin D insufficiency presents dire consequences to health and at least 50% in the US are deficient. Get tested if you are having problems that defy explanation. - George
As for Vitamin D, Encronologist would not test for it, I am not sure I want to dish our $64 for this right now, but is there really any problem with getting a vitamin Supplment of D3 anyway? I did order some from Puritans Pride, I think the 1000 (dose) , I see they had some that was 3000 ! Can't hurt -can it --even if one is NOT deficient, it is hard to overdoes on this stuff-right ? I was doing some reading on it the other day. Nor would she test for Estrogen or DHEA since his testosterone is low normal. (was thinking a small DHEA supplement might be called for too) I am pretty irritated. Everyone, every Professional says something different. She claims NOTHING can increase testosterone naturally. Others say if you lift weights, eat more protein, exercise, alleviate stress and have lots of sex, this will increase testosterone production. Those people say Herbs do nothing, whereas the Encronlogist says the Herbs will screw him up, admitting they DO have an effect. I am forever searching for the truth of the matter here. It is causing me to loose sleep. Started him on this TongKat ali --2 a day for now (5 days on, 3 days off), we'll see what happens. Meanwhile taking the Pentox too and many vitamin /supplements.
Fresh after my visit Mass. Gen. Hospital, Urology, 1st after my last comments, about a week ago , I made the statement my Girlfriend liked the upward curve om my tool, to her its a novelty, I must say I,m happy she is satisfied, But I as you all can relate, Must I go any further, I,m deeply concerned, back to the visit , the Good Doctor told me, my progressive upward curve, from 5%, 10 months ago, my original sense that something was not quite, and the progress since to 45%, 5 months ago, to currently, almost 80-85 %, ,upward only , that he is sending me for Ultrasound, next week, and he believes a program of Potaba, will take , or stabilize, the curve, to some degree, He left me with a sense of hope, that I,m sure we all share, who the hell knows, We all paddle the same canoe, in one sense or another, My biggest beef is it took 4 months to get my first urology Appointment, and 3 months for the most recent, people telling me my problem is not a priority in the Urology WORLD, Well to all the clerical, receptionist, and p[eople I had tell me that BLEEP YOU, it is of great concern to me that my penis is not in proper shape, ( Hawk I am not Computer savy so thanks for steering me hope to use this site correctly,properly, its my only, source of being in touch, with others who share my problem, God Bless ,,Bobby
LoveMyHusband, I think I would find a new Endo ... there's no reason for a doctor to be so stubborn in testing things like E2 or Vit D. The fact that he/she won't means either they're ill-informed, threatened by a knowledgeable patient, or just arrogant and unwilling to let the patient be an active participant in their healthcare. This is fairly common, sadly, and I've heard it said that Endos are the world's worst for any help regarding male hormones - most know a lot about treating Diabetes, but as for Test issues, forget it. Yours seems to be of this ilk. I'd look for another.
nemo
Has anyone tried taurine for Peyronie's?
I'm having surprisingly good results with this simple supplement. I'm taking 2g on an empty stomach, and have experienced quite noticeable reduction in pain and inflammation from active plaque areas.
A google search of "taurine collagen" brings up some interesting studies. I have not fully appreciated it as an anti-glycation supp.
It's easy and safe, and I'd thought I'd mention it. I read that taurine often gets depleted faster that it can be replenished in people who exercise a lot.
s&s
Taurine is definitely on my list of interesting supps. If it seems to be working for you, thats a good sign. Lets hope the benefits continue! - George
I find it really interesting that a doc won't prescribe a Vitamin D test in the face of statistics showing vitamin D deficiency to be epidemic and the consequences of deficiency to be dire in terms of a persons hormone levels. But then my own primary doc today told me that he "rarely sees" vitamin D deficiency even though the neurologist told me two days ago that he tests for it and finds it all the time. I think the reason these doctors "never see it" is because they never test for it and have simply made up their minds it doesn't exist. I would definitely find a new doc! - George
George, I thinks it's the same old song and dance - doc doesn't see an "L" or an "H" on a test result indicating outside the so-called "normal" range and deems everything fine. The lab I tested at shows the "normal" range of Vit. D from 20-100. Mine scored 32. If I wasn't going to a doctor who specializes in male hormone issues, I would bet he'd have said, "your Vit. D is normal" instead of putting me on 10,000iu a day to try to get it up in the higher range, like he did. Good hormone docs for men are few and far between, and even the fact that they're an endocrinologist doesn't seem to mean anything. It's sad.
Nemo
It almost scares you into going to medical school just to try to protect your own health. One wonders how many other measurements are just as meaningless. And this is not to mention that at times they don't even seem to be able to do the tests themselves correctly (New York Times Exposes Vitamin D Testing Fraud (http://v.mercola.com/blogs/public_blog/Thousands-of-Erroneous-Tests-Conceal-a-Vitamin-D-Deficiency-Epidemic-74584.aspx)). But of course, they always manage to collect the bill. And many of the doctors just seem to not want to ask any questions or rock the boat in any way. I guess a lot of the more competent ones are bailing out. There are a few really good ones out there but many just don't seem to care about these issues. The only way you can protect yourself and your loved ones is by doing your own research, I've learned that the hard way. Otherwise you just get sicker and sicker and they are happy to provide a never ending stream of new pills along with lectures on how we need to lower our expectations. Oh well ... I just had to let out this rant. - George
Slowandsteady,
I read your post on taurine, Googled "taurine collagen" as you suggested and found some interesting information. It's also said to help with anxiety, depression, etc. as well as well as the collagen connection you mentioned. It appears to be a safe supplement with no serious side effects. I'd like to try it as I have some anxiety issues as well as peyronies (which could be causing some of the anxiety). I've been taking diazepam for some time but in the last couple of months have been on a gradual taper down from 15 mg per day to 6.25 at present, so I'm interested in trying it both for peyronies and this issue as well. Could you recommend a reliable online source for this supplement. If you don't want to appear to be endorsing a particular supplier you may send me a PM. Thanks.
Fred
Any experiences with Neprinol suggested by By Dr. Theodore R. Herazy
Peyronie's Disease Institute?
Seigar,
Welcome to the forum.
The body of information here is unsurpassed. To use it effectively takes some time learning the forum.
If you click the search button on the forums front page and search Neprinol or Enzymes I think you will find tons of information.
Good luck
In all the years this forum has been in existence there have been no credible reports of success with Neprinol. I, personally, think it is good stuff, but useless in terms of dealing with Peyronie's. Of course its price betrays what is likely to be a huge markup and someone is making a lot of money from selling the stuff. I was taking it for sometime and it seemed to help with several health problems but did nothing for the Peyronie's. Save your money and use it to buy something that is really effective like Pentoxifylline or even Acetyl L Carnitine. And get started on Vitamin D. Pentox and Vitamin D will definitely help you in dealing with your Peyronie's. Take my word for it, Neprinol is useless. Or, of course, you can spend literally thousands of dollars on the doses of Neprinol Herazy recommends and find out for yourself. - George
A bit of Googling shows that Ted Herazy has been involved in various health care promotions over the years and seems to be a bit of a chameleon. Before his recently acquired Peyronie's expertise, he became a chiropractor, and accupuncturist and a practitioner of the "Emotional Freedom Technique", which among other things can help you lose weight. If interested, he offers EFT by phone. Currently he's into Neprinol, which he also offers as an arthritis treatment. A versatile guy
Quote from: Fred22 on January 16, 2009, 02:16:16 PM
Could you recommend a reliable online source for this supplement.
Fred
Hi Fred. Taurine is a pretty common supplement. Any reputable source will probably be just fine (like Now, Jarrow, Source Naturals, LEF).
s&s
Thanks for the information.
Fred
Recently my husband received a reward in the mail from Vitamin Shoppe for $90. I see he had to spend over $1000. on supplements to be eligible for that reward. I questioned him further and he said there was a guy named george on this peyronies board who made a lot of suggestions about what supplements to take. So my husband has been buying them as fast as george can suggest.
I went on the board and read some of georges posts from this year and last year and the previous years. george makes many of his suggestions with great certainty in many posts "these supplements are helping me." george writes.
I also noticed that ten or twelve months later george posts that he has discontinued taking the upplements
because they don't seem to be having any. By the way, none of the supplements my husband takes that were recommended by george has helped his condition.
I suggest you stop playing doctor and contact your doctor and suggest they get involved in innovation and drug development.
I am very sorry that your husband spent a lot of money on things that did not help him. I find it curious that after trying things that I supposedly suggested and finding that they didn't work, your husband continued to buy more and more things that didn't work. I have never instructed anyone specifically to take this or that supplement except for a few rare occasions where there is overwhelming evidence that they should be taking a specific substance. I have also repeatedly stated that I am not a doctor and instructed people to seek the advice of their doctor when asked directly for advice.
I have pointed out repeatedly that there are only a couple of supplements with research demonstrating their effectiveness in treating Peyronies. And I have tried to be very honest as to what supplements were helping me and what ones were not. Just read any one of my posts regarding Neprinol. When I have stated that certain supplements were helping me, I was just reporting what I believed to be the honest truth. When ever I had a deterioration of my condition, I reported that as well. Of the many supplements I have taken, I have only attributed to a few significant benefits. But I have reported those things I was trying, just so that others would know that those things had been tried. And now, I have indeed dropped most everything I was taking before, not because some of these other things were not working, but rather because I have finally found something that works better and gets closer to the root of the problem. And all along, I have tried to be diligent and go back and modify my old posts when I discover that something I previously posted was incorrect.
You have to understand that Peyronie's is something that is very difficult to treat and until now there have not been many options. So I have been searching for something that is helpful, reporting on the results and putting my own health at risk to some degree while doing so. At the same time, I have been urging people to see Peyronie's specialists such as Dr. Lue. I would hardly call that "playing doctor". If you take a closer look at this thread, you will find numerous people suggesting various supplements and lively discussions surrounding those suggestions. If your husband is trying to copy everything I do, I don't see how you can hold me responsible for that. I have never made any attempt to try to promote that behavior and, in fact, have tried to discourage it. This is really just a big discussion between anonymous people and anyone taking what is discussed here to be "doctor's advice" should have their head examined and on numerous occasions the moderators have stated that. Over and over people posting here have been advised to seek the council of their physicians. - George
HS,
Welcome to the forum. If you have read all of George's posts you have been very busy since you only registered fifteen minutes ago and George has made over a thousand posts.
At least dozens of those posts encourage members to seek sound medical advice from their doctor and many more readily acknowledge that George is reporting what seems to work for him with no guarentee that others will progress the same way.
I notice you make no mention of your husband's expenditures with doctors or how effective their treatments have been. You also did not mention your husband's anonymous member name so it is difficult to guess over how long of a period he spent this money. If he has been here since George has been posting, then he has only spent the equivalent of a bottle of spring water per day. If effort and amount of money has been spent trying to search for some effective approach, as his support, possibly it would help to encourage him.
In the end, your husband and you, can either give up, wait for a cure that has been elusive for several hundred years, or use good judgment to try some of the things that have helped others on this forum. Many leading Peyronies Disease doctors will work with your husband on many of these things such as the pentox, and arginine, that George mentions frequently, or with traction or the VED.
No one should blindly follow the path of any of our thousands of members just because we may share what works and what does not work for us. The great thing about being an adult is that you or your husband can research, consider the experience other patients, discuss with each other, then make adult decisions. With adult decisions comes the necessity to accept responsibility for those decisions. That is what we all do and what we encourage.
Regards
Hawk.
All,
I posted a while ago that I was experiencing serious tendon discomfort and believed it to be attributable to Pentox. I confirmed my belief. After quitting Pentox for 2 weeks, the discomfort subsided.
It's hard for me to explain what the discomfort was but I'll try my best. The clavicle attaches to the breastbone via the sternoclavicular joint. I felt as if my sternoclavicular joint eroded so that the clavicle was rubbing against the breastbone. I felt pain and grating, popping sounds.
I had this for over a year now, and it developed 1 month after I began Pentox in 2007. I quit Pentox in 6 months, and the discomfort remained. However, I resumed Pentox in November and the discomfort increased substantially. I felt that I will need surgery. I quit Pentox and after 2 weeks the discomfort subsided to a point where it is tolerable.
I wish this side-effect could be investigated. My Peyronies Disease benefited from Pentox but the rest of the body suffered. I've been living with this mess for 3 years now and it's slowly getting worse. I can't wait to hear from the Xiaflex trial folks about their 2 round of injections... With a 40% twisted curve, I think eventually I'll wind up with either Xiaflex or Dr. Lue. And the second option is frightening.
Believer,
Did you discuss this issue with your doctor?
If so, what were his thoughts?
I discussed it with Levine, he said that Pentox should not have anything to do with it. I'm yet to speak to an orthopedic surgeon. But it is clear as day that Pentox has something to do with it. As soon as I stopped taking it, the problems ceased to a minimum. Yet they (problems) occured only after I began Pentox in the first place.
It's tough. Without Pentox, I constantly have a mild ache in the flaccid state. Don't know what to do. I feel tempted to get back on Pentox, but I'd like to keep my arms attached...
I think one thing that occurs quite often is an interaction between drugs, supplements and even foods with underlying hidden anomalies that are specific to us as individuals. In some cases these interactions are somewhat common and thus get listed as known side effects. In other cases they are rare to the point of only affecting a hand full of individuals, thus no one has ever heard of them. Dr. Oz describes this effect by depicting the body as layers of swiss cheese. All of us start out with some holes in some of the slices of swiss cheese. But as long as some of the layers remain intact everything is OK. As we age, more and more holes form in the various layers. But as long as those holes don't line up everything is OK. But things can get so tenuous over time that suddenly, a string of holes lines up and the barrier is breached and we experience a "side effect". One thing that medicine really has not done very well up to now is to learn techniques on how to treat patients as individuals. Medicine does a very good job of assembly line therapies although not a very cost effective job. But, as a result, outcomes are often mediocre, and that just contributes to our increased medical costs.
Certainly, in the case of Believer, I would hope that he has had a Vitamin D test done and that he has made sure his blood levels are up to snuff at a level of at least 50ng/ml. Lack of vitamin D is being identified as being related to so many problems they are impossible to numerate. And, at the same time, lack of vitamin D is being identified as a problem of epidemic proportions in the US and around the world. - George
I came across this study titled "Red cell aspartate aminotransferase saturation with oral pyridoxine intake (http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1516-31802005000200004&nrm=iso&tlng=pt)" which says
QuoteThe hematological diseases vitamin B6-responsive sideroblastic anemia and myelofibrosis, and also the urological disease Peyronie's syndrome respond to high pyridoxine doses.4,5
I was unaware about this claim that higher pyridoxine doses have an effect on Peyronie's. Reference 4 looks to be in Portuguese (Olszewer E. Vitaminas. In: Olszewer E (ed.). ABC da Medicina Ortomolecular. São Paulo: Tecnopress; 1997. p. 12-3), and reference 5 is PMID 707525 (http://pubmed.gov/707525), "Response to pyridoxine hydrochloride in refractory anemia due to myelofibrosis". I think using these studies to back up the claim of an effect of pyridoxine is speculative and stretching it a bit.
I do like the pyridoxamine form of B6. There is a good summary of pyridoxamine here (http://morelife.org/supplements/PM.html), which is one of the three forms of vitamin B6. In PMID 707525, 250 mg of pyridoxine hydrochloride was used, but of the three forms of B6 pyridoxine is the one I avoid. Pridoxamine is the best at glycation inhibition without the side effects of pyridoxine. Now that pyridoxamine is back on the market (so far only LEF has it), I have been taking 50 mg/day, but my current thought is that this is too little. Doses of 250 mg twice a day seem to be well tolerated (PMID 17823506). On an anecdotal note, Paul (http://morelife.org/personal/health/his-regimen_changes.html) and Kitty (http://morelife.org/personal/health/her-regimen_changes.html) take 480 and 320 mg (they weigh 132 and 108 pounds respectively).
I plan on increasing my dosage starting at 200 mg and perhaps building to 400 mg (I weigh just over 140 pounds), backing off if I get any tingling. I'll report back.
s&s
Guys,
I may be in the minority, but my Peyronies Disease frequently causes a feeling of soreness in the flaccid state. The pain is irritating, not sharp, and tolerable, but irritating to the extent that I have to think about it all the time.
I recently tried a homeopathic cream called Topricin. In my opinion, it does a good job at reducing pain. It actually works well with any kind of pain, and for those of you who have pain with erection, it may work as well.
I thought you may want to have that as an option. There is a lot of material about it on the net.
I have a very similar pain to yours Believer. Mine varies on a day to day basis but is always very irritating. It seems like it depends on the pants I am wearing also. Any friction whatsoever makes the pain worse. I had not heard of Topricin.
At this point I have two types of pain intermittently. One is kind of a dull ache and seems to be on the top side of my penis in the area of the plaque. I also sometimes have a sort of "burning' sensation that feels like a UTI and sometimes occurs after urination. Either of these types of pain can come and go at any time. For quite a while I would have pain after a morning erection, but that seems to be improving. In fact, my pain in general has diminished considerably (and gradually) since this spring (2008). As I have said before, my pain started in the spring of 2006 and felt somewhat like a UTI, then increased until I was experiencing almost daily pain for over a year to the point that I had to take 600 to 800 mg. ibuprofen for relief. At times the pain was very bad. I was not diagnosed with Peyronies until September of 2008, after I woke up one morning with an upward curve in the spring of 2008 (right after the pain had subsided to the point that I no longer required the ibuprofen.) The uro who diagnosed me in Sept. put me on vitamin E and told me to come back in March. I've been taking 400 IU Isomer E from GNC since September, but of course don't know if that had anything to do with the pain reduction. I also just started taking 2 grams of Taurine daily, haven't been on it long enough to know if it's helping. I'm also taking 2000 IU D3. I want to start VED therapy, but have an ongoing battle with my insurance provider (Cigna) regarding coverage. I've been given at least 3 different stories from different people at Cigna, but still no resolution. I haven't heard of Topricin but will check it out. Many doctors (including mine) will tell you that Peyronies only causes painful erections and if you have pain in the flaccid state that it's caused by something else, but I think most of us here know better. It seems the pain can take many different forms depending on the individual. I'm just thankful that my pain has leveled off but, like everyone here, am hoping for a really effective treatment, hopefully in the not too distant future.
Fred
Pain in flaccid state is caused by inflammation. Reducing the inflammation can reduce the pain. Eliminating the inflammation will eliminate the pain. - George
Fred22:
VEDs are available without prescriptions. Some companies will pay for them if prescribed for ED but not for Peyronies Disease. So ask your doc to go for a VED based on an ED diagnosis, then ask for coverage.
Old Man
George is right, inflammation is the cause. The problem, at least for me, is that this inflammation comes and goes. Topricin seems to help me relieve the pain. I am against ingesting NSAIDs for extended periods of time. A topical ointment that works is my preferred choice.
As far as UTIs... I also have a big problem with that. After ejaculation, if I don't urinate for a while, I have severe burning when initiating urination. I learned to cope with it, and to control the flow of the stream so that the pain does not progress. This is very strange to me. Usually I would ejaculate at night and go to sleep. When waking up in the morning, if I don't urinate carefully, the burning will increase. At one point it intensified so much that I had to take a hot shower to relieve the pain. The pain comes from the part of the urethra that is about 1/2 inch from the tip of the penis. Doctor suggested sticking a camera into the urethra to check, and check of prostate. Neither of the options sound pleasant to me at this point, so I just deal with it. I don't think I have a UTI, because the pain comes only after ejaculation, and only if I don't urinate for several hours. I also don't think that at my age (23) otherwise healthy men have prostate problems.
My primitive theory is that the urethra is narrowed due to the Peyronie's plaque and when the sperm dries up in the urethra, urine flowing at full speed causes the dried up residue to shatter, but due to the possible urethral narrowing, this process causes pain.
I noticed at the initial outburst of urine, controlling the flow minimizes any pain. Conversely, letting urine flow uncontrolled causes pain that intensifies.
Believer,
I have a little trouble following your theory. My understanding is that the Peyronies plaque forms on the tunica. I think the urethra runs through the corpus spongiosum. I suppose a "band" of plaque located on the ventral side of the penis on the tunica could apply some pressure on the corpus spongiosum and therefore the urethra. But then I think you would have a restricted flow of urine all the time.
Les
The inflammation involved in Peyronie's is driven by an autoimmune process. Any person with autoimmune vulnerability is systemically vulnerable to autoimmune processes. This means that a person with Peyronie's could conceivably have a low level autoimmune process going on in the urethra as well that ebbs and flows, meaning that sometimes things are near normal and other times there is constriction due to transient inflammation which can restrict urine flow. I am not sure that this is the case with Believer, I am simply asserting that such a situation is possible and that inflammation alone can constrict urine flow especially if the urinary sphincter is affected and that this can even cause a low level UTI. The underlying cause of autoimmune problems is often Vitamin D insufficiency which is why I harangue over and over about getting tested and taking appropriate steps to deal with the problem. - George
lwillisjr,
You may be right, it is difficult to understand. I think that the plaque exerts a small force on the urethra, but that force varies as the plaque is organic, it sometimes feels hard, sometimes soft. Plus, whatever force is applied still causes the urethra to be in a bent position all the time. Hours after ejaculation, the sperm residue dries up in the urethra. When a stream of acidic urine pushes the residue out, it forces the urethra to expand momentarily, and this expansion, given the plaque's resistance, causes pain.
George,
Thanks for the input and for stressing Vit D. I actually have been taking D3 for a month or so, but never was tested. I recall you mentioned that NY citizens have no access to free tests..I don't mind paying, but how do I get tested? Do I have to go to a physician?
Old Man,
My dr. has authorized the VED for ED. The problem is with Cigna. I was first told that it was covered at 100% as "durable medical equipment". Then I was told it was covered as an "external medical prosthesis" which required the payment of a $200 deductible. I called Edgepark Medical (the Cigna provider) and gave them my CC number for the deductible. Edgepark called me back 2 days later saying that Cigna had told them that the VED was not covered at all. I then contacted the insurance person with my former employer, she called her contact person at Cigna and was told that it was covered at 100% if Edgepark filed it as "durable med" or $200 deductible if filed as "external prosthesis". I then called Edgepark and told them what I had learned and they said that since Cigna had rejected the claim I'd have to pay the full amount up front ($289) and then just wait and see if Cigna paid. I passed this info on to my insurance person and am currently waiting to hea
Don't know what happened with my last post. While I was typing it just disappeared and then appeard on the forum. Anyhow, I'm currently waiting to hear bck from my insurance person but I'm considering just going ahead and buying from Fitzz (sp. ?). Sometimes I get the feeling that insurance companies just try to wear you down and hope you'll go away. Frustating!!!!
Fred
Believer, You need to go to http://www.vitamindcouncil.org (http://www.vitamindcouncil.org) and soak in all the information there about vitamin D. Then take that information with you to your primary doctor and try to bring as much pressure to bear as necessary to get him to follow through on this. The blood test provided by the Vitamin D Council's contract lab via their website costs $65, but is NOT available to residents of NY without a doctors order. But they are a specialized lab dedicated to hormone testing and CAN do the test for you WITH a lab slip from your primary physician. Also, Lab Corp is a major national lab and has a good reputation for producing accurate vitamin D test results. In any case, I would urge you to first learn all you can from the Vitamin D Council website. - George
Fred22:
What happened is that you probably hit the send button accidently. That happens to me sometimes due to the DC in my hand. Had it fixed last week.
Old Man
Whilst you are all on the subject of vitamin D I read this appropriate article in todays paper
http://www.mailonsunday.co.uk/health/article-1127175/Top-cancer-doctor-says-SHOULD-sunbed-session.html
Fred, There IS an edit function whereby you can click on the MODIFY button and bring up your old post all over again and fix it. - George
Thanks George. I'll remember that.
Can anyone tell me how acetyl L carnatine is suppose to help, and what it does? thanks for any answers
I think that the deal on ALC is that it is simply a very good antioxidant that just happens to be effective (at least for some people) in dealing with Peyronie's. - George
In addition to being an antioxidant (of which there are many) ALC is very instrumental in affecting fatty acid metabolism. This seems to play a role in many aging factors so ALC has shown benefit in cognitive functions, memory, bone loss, male fertility, and a host of other issues. Possibly even neuropathology assotiated with diabetes ( my memory is fuzzy on this I need some more ALC). It seems to have a possitive effect on skin collagen cross-linking (according to Dr. Nicholas Perricone) and to ED. I am not sure how much of the above benefits are established through objective clinical trials.
Since the exact mechanisms of Peyronies Disease are not understood, and the doctors that prescribe pentox avoid any pronouncement of exactly how it works on Peyronies Disease, I think we are at a loss to state what role ALC has. Studies are limited to one small Italian study and no one else ever seems to be able to duplicate their study results. Many on this forum do report a direct and fairly quick (several days) relief from Peyronies Disease pain with ALC however (including me).
I was diagnosed almost 2 years ago with peyronies, and the uro told me to take 800iu of vit e. I still take that. It hasn't gotten worse, but it hasn't improved either. I just recently started the ved, but would like to know if others kept up that amount of E or cut back, or increased? I use a full spectum e now, after the first year and lots of searching for info.
tired:
George999 can possibly help you more than me about the amount of E to take. However, I used large quantities of E during the first several months of my VED therapy using the old one cylinder manual model.
My uro monitored my toxicity to keep down any problem with that.
Afterwards, he recommended that I reduce the E to a maximum of 400 I.U.s per day taken at bedtime. He said that E is better absorbed during sleep for some reason (have no clue why). IMHO I would suggest that since you have taken 800 I.U.s for such a long period, that you might need to reduce your intake to 400 per day.
Dr. Tim and/or George999 should have a better picture of this so maybe they will jump in and give their opinion.
OldMan
I think actually that 800IU is pretty close to optimal, and bed time is probably indeed a good time to take it. I think I was taking 400IU at lunch and another 400IU at bed time when I was taking E, but, again, 800IU sounds about right. I took that amount for over two years without any problem. - George
I began taking Trental 400mg twice daily successfully on May 15 2008. I say successfully because I had stomach issues with it initially. I can say that it (or the other treatments I'm taking) has stopped the growth of the plaque, possibly even softened the plaque.
I'm seeing my Uro shortly. It will be almost 9 months on Trental. Since I'm tolerating 2 x 400mg daily I'm inclined to up it to 3 x 400mg daily as most of you are taking.
If I'm getting some benefit on 2 doses a day it would seem 3 doses a day would be even better? But then why not 4? Any comments on the recommended optimal dosage of Trental?
I am on 2 x 400 as well but only since early December 2008 and am curious as to how many are taking 1200mg daily versus 800. My doctor (GP NOT Uro) wants to run a comparative blood test after 3 months at 800mg/day and ensure there has been no change to kidney function, least that is what he told me. I have not as yet noticed any softening or regression of plaque however there has not been any change to what has been an active condition (new plaques) over the last 9 months either so I classify no change as success. Still waiting for my VED, unfortunately it would seem the Augusta folks have left the fitzz people high and dry on cylinder supply early this year. I am supposed to get a personal update from Mark at Fitzz today. Anyway, back to the point: Those of you currently on Trental, what is the prescribed doseage you have been given? Both Lue and Levine seem to initially prescribe 6 months at 1200/day.
Quote from: Ptolemy on January 27, 2009, 01:19:56 PM
I began taking Trental 400mg twice daily successfully on May 15 2008. I say successfully because I had stomach issues with it initially. I can say that it (or the other treatments I'm taking) has stopped the growth of the plaque, possibly even softened the plaque.
I'm seeing my Uro shortly. It will be almost 9 months on Trental. Since I'm tolerating 2 x 400mg daily I'm inclined to up it to 3 x 400mg daily as most of you are taking.
If I'm getting some benefit on 2 doses a day it would seem 3 doses a day would be even better? But then why not 4? Any comments on the recommended optimal dosage of Trental?
I spent a long time with my Peyronies Disease experiencing the dull, aching sensation probably at least 3 times a week since I got the damned disease, until I finally bullied my uro into giving me a prescription to pentox. I've been on it for a month and a half, with about a three week lapse when I had an issue renewing my scrip at the local pharmacy. I'm taking generally 1 a day, due to stomach upset, unless I feel inflammation happening and then I'll take 2. I'm feeling as positive as I can about the whole thing.
There's no question that as soon as i started taking pentox, that dull pain went right away - it comes back now after ejaculation, sometimes, but more or less leaves me alone in the pain department. For that alone this is a miracle drug. But I've noticed that some of the plaque nodules seem to get smaller when I'm on pentox - when I went off scrip for a few weeks as compared to now, there's one specific nodule that feels maybe 1/3 less in size. Is this a placedo effect? Am I imagining this? I know 2/3 months of pentox isn't anything to crow about, but has there been any documentation of rapid improvement? My curve has likewise straightened a very little, but I feel that's more an effect of plaque on the other side of the curve hardening to straighten everything slightly. The only negative problem that persists is a continued "dull" sexual feeling in my penis, as if I were wearing a condom during stimulation even when I'm not.
Could Pentox be the cause of this improvement? Or am I experiencing a placebo effect? I'm nowhere near cured, but I think things are improving...and for a while it seemed like even that was an impossibility! Also, if anyone has any ideas as to what might help that dull "condom" feeling, be it VED or some supplement, I'm all ears!
I am on Pentox, 400mg, 3 times a day and have been taking this dosage for five months. There have been changes and perhaps my pain seems to be less but I do not know if this is just the disease progression or the Pentox having some effect... As those that follow my posts know, I was diagnosed with venous leakage by my uro about a month ago.
Ocelot, I too have that dull feeling upon sexual stimulation. It seems to subside right before I ejaculate. Also, the pain is the worst in the half hour or so after I ejaculate. When looking at my own penis I clearly see a ring of lumpyness circling my shaft right under the head of my penis that was 100% definitely not there before my issues began. It takes longer for blood to get into the head of my penis, but it does before I ejaculate. When I start to experience the strange pain starting a couple minutes after I ejaculate and the semen has run its course and I pee I notice that the bottom of my penis is nearly completely devoid of blood and is flacid. The head though? It is certainly abnormally large and this is where the pain is. It looks as if the blood is trapped up there and slowly seeps out. In the most non-medical terms possible I believe what is happening to me is this:
There is something lumpy and visible that is impeding my blood from entering the head of my penis. The blood tries hard enough though and it finally gets in there. I ejaculate shortly after. After ejaculation, the blood rushes out of my penis. However, the blood that FINALLY made it all the way into the head of my penis is having a rough time getting out. It has to slowly seep and trickle its way back down and out of the head of my penis and out. Hence, the deformity I am seeing after ejaculation and the strange groaning pain...
I made mention of this to my uro and he shrugged me off and said no evidence of anything related to Peyronies in any way, diagnosis venous leakage. I really feel he is very wrong. He is the third uro I have been to and I plan on seeing more. I am so busy with schoolwork though it is ridiculous.
ocelot556, I had bad stomach problems with Pentox after 2 attempts. On Tim468's recommendation I switched to Trental. I make sure I take it in the middle of a meal and I've had no stomach problems with Trental.
Gee, was that my advice? I don't remember! I thought Trental was simply a brand name for Pentox. Either way, I am glad it's working now.
Tim
Wow! I have actually run into this before. While the active ingredients are the same in both the generic and the patent drug, the inert ingredients and production process often are not. I experienced this with an antibiotic. I was on a maintenance antibiotic for years with no problem and then was switched to a generic. I immediately had an allergic reaction with hives. To this day I suspect that it was not actually the antibiotic I was allergic to, but to some other component in the mix. - George
Hmmmm,
Assuming the difference in side-effects is not coincidental or placebo effect, George must be right. Another thought is are they both time release?
Quote from: Tim468 on January 28, 2009, 10:34:56 AM
Gee, was that my advice? I don't remember! I thought Trental was simply a brand name for Pentox. Either way, I am glad it's working now.
Tim
Maybe I misunderstood your response (Reply 2249 on May 13, 2008)
Quote from: Tim468 on May 13, 2008, 02:37:36 PM
If the headaches continue consider Trental extended release to see if a slower release into your blood stream works better. I note that headaches are rarely reported side effects and occured a little LESS than in the placebo (1.2 vs 1.6 percent of the time).
I asked my Uro for Trental extended release and was given a prescription for Trental and it worked. I simply assumed that all Trental was extended release. Who knows, maybe it was simply a self fullfilling prophesy.
Edit -> Quote link fixed by Hawk
All the information I am seeing indicates that ALL Pentoxifylline, both Trental AND generic are basically extended release by definition. - George
Hawk, Tim, George or anyone else:
I cannot find, or get consensus on whether or not Pentox should be discontinued before minor (ie periodontic) surgery. I do see it on lists for other surgeries (hemorrhoid, plastic etc) as Trental, indicating that it should be stopped 7-10 days before and restarted 7-10 days after the surgery. Anybody have any specific info?
Regards
Mike
I am of course waiting for feedback from my uro and GP BUT, as you gentlemen are well aware, many out there have never prescribed/worked with this particular drug and are almost as clueless as the patient.....
I say why risk it? If you're only talking about a 2-3 week break, I'd stop the Pentox if there's even a question in your mind.
nemo
I agree with Nemo. I had arthroscopic surgery twice in 2008 – Hernia and Rotator Cuff. My doctor suggested stopping everything except the meds prescribed by my cardiologist
I can tell you my experience with Pentox when I had my colonoscopy. The scheduling nurse asked me what medications I was taking and I told her. She instructed me to continue all medications as usual. I told her that Pentox was a blood thinner. She responded that because of the type of blood thinner it was, it would not be a problem. So, because I sometimes don't follow instructions very well, I stopped the Pentox anyway. When the day of the colonoscopy came. The doctor asked what meds I was taking. I told her Cozaar and Pentox. She was kind of aghast and said I should have stopped the Pentox. I told her that I had stopped it on my own contrary to the instructions of the nurse. She then became irritated, not at me, but at the nurse. So, perhaps this gives you the picture. I not only would stop it, I did stop it, and the fact I did pretty much saved the day. - George
Yeah, I've had a colonoscopy. If I'd found out after two days of miserable prep that I couldn't go through the procedure and would have to do it all over again, I'd have been using that colonoscope on the Nurse! Saved the day, indeed.
nemo
whats the group's thoughts about using 5mg of Cialis for vascular health. I recall a research paper citing the benefits from such a dose
I am taking between 2.5 and 5 mg of Cialis a day - in fact, I am now down to 5 mg every other day. This minimizes the side effects of nasal stuffiness, and seems to have helped arrest the progression of my Peyronie's. But, that said, I am never completely sure what accelerates and what slows the progression I have. What I can say is that this is tolerated well and has completely removed my problem with mild ED. The recent paper showed that this was better tolerated and worked very well for men with ED. Still no good data on this class of drugs effects on Peyronie's.
Tim
did you purchase the cialis from an online pharmacy Tim?
Hitman,
I don't know about cialis, but when I used to take viagra I didn't like the side effects such as face flushing, and rapid heart beat. Apparently cialis is being reviewed for pulmonary arterial hypertension.
Cialis (http://en.wikipedia.org/wiki/Cialis)
In an earlier post I reported that for me a scoop of whey protein increased inflammation and pain in an active plaque region. It still does, by the way. I was leaning towards lysine as the culprit, since there is so much of it in whey. So I tried a little experiment.
I took l-lysine supplements (2 of 500 mg) twice a day and looked for an effect. Result, nothing bad, perhaps a mild improvement. Hmm.
My next suspect was methionine. In a 23 g scoop of whey protein, there is 410 mg of methionine (Jarrow brand, in my case (http://www.iherb.com/ProductDetails.aspx?pid=343&at=0)). I too 200 mg of methionine in the morning and 300 in the afternoon. Result, increase in inflammation and pain. Methionine restriction turns out to be life extending (discussion here (http://www.imminst.org/forum/index.php?showtopic=9303) of a complicated subject).
Too much methionine can result in elevated levels of homocysteine. I don't know whether there is any link between homocysteine and Peyronie's (there doesn't seem to be in the case of ED).
I'm going to try another experiment when I get home: take a few grams of taurine, which by the way is absent in whey. Perhaps it will counteract the methionine. In the meantime I'm going to lay off the whey.
s&s
I found my Cialis from an online vendor. It was cheap and in bulk, and I found it through word of mouth from another web site that is focused on penis enlargement. Using "personal" recommendations from men who had been there a long time and who had worked with this guy, I bought some from him and it works fine. I am slightly concerned about the provenance of the drug (that is, if it was manufactured cheaply in China, are there adulterants in it??), but so far so good. I do not recommend doing this to others, and chose to do it because I wanted to do a long trial of the medication without getting into a fight with my insurance.
Tim
I also bought cialis from an online vendor and when I unwrapped the package it looked like a pill stuffed with wallpaper dust.... One should note that ordering prescription drugs from online pharmacies in other countries is not legal. However exceptions have been made for certain canadian pharmacies that are registered sellers.
Online pharmacies (http://en.wikipedia.org/wiki/Internet_pharmacies)
Alcohen,
I took pentox for a year, it definately made my penis softer and improved my overal condition. After I stopped it my gains did not go away, my penis also got bigger, there is no doubt in my mind it reduced and eliminated plaque. I"ve been off of it for a year and a half and now my penis is slowly worsening again. I"m getting ready to start it again and may never get off of it. I didn't have the luxury to do the doppler x ray cause my doctor thinks thats nonsense. Find a doctor who will prescribe you pentox and get started. The only side effects I noticed were tingling sensation in my legs when i started, this later went away after about one month on the medication, some constipation unless i would drink a full 12 oz. bottle of water during the day, and hit the water fountain a few times as well, and slightly dry mouth. I had no dizziness or headaches or anything like that. You can get upset stomach but only if you take the pill without any food, take it at meals. I'm curious to see what side effects I have coming up here when I start pentox very shortly... Overall the side effects are nothing to worry about, and it seems like as soon as you take the medication your erections will improve and become solid and "full," this must have to do with the venous leakage, I'm not really sure how though.
Comeback
i agree - pentox or trental definitly reduces pain and helps with everything -
if there are guys reading this who do not post and have Peyronies Disease JUST see your uro and get the pentox and stick to it - it really really helps!!!!
I continue to agree on this. Whether its venous leakage or whatever, Pentoxifylline (Trental) is absolutely the best shot at improving things. - George
Guys,
Just to keep things in perspective. While it does seem that Pentox helps some it still isn't the cure all. Not trying to be negative but Pentox did nothing for me. I had absolutely no side effects, but it did nothing to soften the plaque.
i have a cool chinese doc down the road from me and he prescribes me all the trental i need - i just hope i dont overdose on the stuff - im eating them like candy daily - only joking 3 per day is enough!!
I have been on Trental for nearly 6 months... started on it August 18th. In Mid-November my uro, Dr. Carson, added Lyrica to my prescriptions after I went back to me him saying that my pain when walking and my penis brushed against my pants was horrible. The Lyrica seemed to make a slight difference as ar as pain management... But everything else is just same old if not worse. When I went to refill my Trental I switched it to the generic Pentox. I did this because the Trental was too expensive. The cost of that and Lyrica and paying for appointments with uro's who don't care is driving me to drink...too bad I can't because the Lyrica has listed specifically on the bottle to not drink any alcohol while take the medication.
Alcohen,
It is critical that you deal with reality and not some altered version of reality. Nothing is "driving you to drink". You are free to choose what you decide to choose. You are not a product of fate but a product of choices.
If you cannot afford medications, then you certainly cannot afford to drink. That is especially true if it impacts the medications you are spending money on. You also cannot afford it for the physical impact on the body (reduced testosterone just for starters).
Don't look for excuses and don't contribute to your problem. If you do, you will have YOU to blame.
Good luck with an issue that can esily become far MORE destructive than Peyronies Disease.
The "driving me to drink" was an expression that I often hear and when I was writing this post I remembered the writing on the bottle of Lyrica that said do not take with alcohol and I thought I would be witty. Clearly I was not and my choice of words was poor and for that I apologize. I think I got drunk one time in my life, when the Carolina Panthers lost the super bowl and I was at a Super Bowl party at my college dorm.
I am not living in an altered version of reality. I am living in the reality where my penis hurts when I walk. I am living in the reality where I cannot show the person who loves me that I love them in return without experiencing PHYSICAL pain of some sort. The EMOTIONAL pain that is going along with it obviously is horrible, but I can choose to have a better outlook on things and I try to do so. I am living in a reality where I have an issue with my penis that nobody really understands and where the uro's I go to first tell me that there is nothing wrong with me and then tell me I have the very real problem of venous leakage. I am also living in the reality where there is no long-term surgical solution to the leakage issue that I have and doctors do not look to do it because of fear of further damage.
Those are all a reality. I wish that I could simply choose to today have a non-painful and full erection again but I cannot. That is the harsh reality.
To be on expensive pills for forever that in my case only marginally deal with pain and do absolutely nothing to increase my function is depressing.
alchohen, The problem here is that Dr. Carson is probably THE top doctor in terms of being equipped to deal with the issues you are facing. I would encourage you to continue to rely on him to help you sort this out. - George
Quote from: alcohen on February 05, 2009, 09:51:29 AM
The "driving me to drink" was an expression ...l and I thought I would be witty. Clearly I was not and my choice of words was poor and for that I apologize. I think I got drunk one time in my life, when the Carolina Panthers lost the super bowl...
Those are all a reality. I wish that I could simply choose to today have a non-painful and full erection again but I cannot. That is the harsh reality.
To be on expensive pills for forever that in my case only marginally deal with pain and do absolutely nothing to increase my function is depressing.
Understood! I was just originally misunderstood your post an was concerned.
Quote from: George999 on February 05, 2009, 11:44:43 AM
alchohen, The problem here is that Dr. Carson is probably THE top doctor in terms of being equipped to deal with the issues you are facing. I would encourage you to continue to rely on him to help you sort this out. - George
That is what I had heard before going to him also! About a month ago I posted my most recent experience with him. I have seen him three times. Quick recap, the first time was in August and was just an initial examination by hand upon which he prescribed Trental. At that point, a blood doppler ultrasound was scheduled for December 29th. This was the earliest that it could be done. Three months later when the pain was getting unbearable so I went back and he prescribed Lyrica. After the blood ultrasound he gave me a sample of Cialis and said good luck. He said he could recommend a sexual counselor. He said there was nothing to be done about venous leakage and that I could take the Cialis if I wanted to have intercourse. That was it. No other alternatives and no answer for my pain. He said that he noticed curvature on the ultrasound but no scar tissue or anything else.
I tell you what, I'm no Peyronie's expert or urologist but the differences before and after my trauma are astonishing. Those who have followed my posts know that I have a lumpy cord running down the middle on the top. Right underneath the head I have a ring circling it that looks exactly like a scar you would see on something after surgery was done that is very lumpy to the touch. The right side of it is lumpier than the left. On the underside on the left there is another cord-looking lumpy section that goes all the way to the top. When looking at this area I can see a spot inside that looks like separated tissue. It is very rough and lumpy to the touch. This is the same area that when erect I bend towards. Also, after ejaculating, this is the area that it looks like blood pools up in and there is a very obvious and extreme curvature for the half hour after doing so. All these things can only be seen when erect.
He had no answer for any of this! And said there was no scar tissue! Heck, if I took pictures of this stuff and showed it around I think anybody would look at it and say hmm that looks like a scar.
Gah... Clueless as to what to do. I really figured Dr. Carson would be somebody who could actually help me try to get back to some semblance of a normal life. I left feeling more defeated than if I had not gone to him. When reading everyone's posts on here I had hope for future trials, treatments, etc. Now I know I have venous leakage and that there appears to be nowhere to turn. I sent Dr. Carson an e-mail three weeks ago with questions about not a possible treatment but just ways to cope and deal with venous leakage...whether it is through VED or anything else. I never got anything back. Also, JackP on the forums here says that he was a patient of venous leakage and that pills like Cialis did nothing...
I just want to be happy again.
Quote from: alcohen on February 05, 2009, 03:00:14 PMHe said there was nothing to be done about venous leakage and that I could take the Cialis if I wanted to have intercourse. That was it. No other alternatives and no answer for my pain. He said that he noticed curvature on the ultrasound but no scar tissue or anything else.
Dr. Carson is doing his best in dealing with a very difficult to treat issue. The pain is likely being caused by the autoimmune process where the immune system is attacking healthy tissue with TGF-beta1. This is the same type of process that occurs in diseases such as multiple sclerosis and diabetes. There is NO KNOWN cure and very limited treatment options for these types of diseases. Not long ago the ONLY treatment for Peyronie's was Vitamin E. "Take Vitamin E and it will just have to run its course." Pentox is vastly superior to Vitamin E. Pentox directly inhibits TGF-beta1. The pain is excruciating. I have been there and so have a number of others on this forum. Dr. Carson is doing the best he can for you, but there is no a lot he can offer. In regards to the ultrasound, the cord and the lumps you are feeling are not scar tissue even though they feel like they are. They are the result of inflammation like when you get a severe bruise and the patch underneath feels hard. They are inflamed tissue NOT scar tissue. That is actually a GOOD thing. Just keep on taking the Pentox and it will help to limit the eventual damage. The inflammation you are feeling as lumps is what actually causes the scar tissue to accumulate. Keep taking the Pentox and it will limit that process.
My personal additional advice is that you get your vitamin D levels checked. Vitamin D deficiency is being identified as a causal factor behind a number of diseases and Peyronie's may eventually make it on to that list. Go to http://www.vitamindcouncil.org (http://www.vitamindcouncil.org) and http://www.grassrootshealth.org (http://www.grassrootshealth.org) for more information. Raising your vitamin D levels may well help additionally to reduce your pain issues by limiting release of TGF-beta1, but you need to act quickly and decisively and get help from your primary care physician and getting this addressed. The information on the above web sites will give you the facts you need to know to discuss vitamin D with your primary doctor knowledgeably. - George
Here is an interesting current article detailing how vitamin D deficiency promotes multiple sclerosis AND other autoimmune diseases in genetically susceptible individuals:
Study links gene variant and vitamin D to MS risk (http://www.reuters.com/article/scienceNews/idUSTRE5143O020090205)
Can someone please explain to me why if it is known that Pentox inhibits the TGF-beta1 through documented medical evidence, why is it that so few doctors prescribe the drug? I went to multiple doctors at well respected medical facilities in one major city in the US, and never heard a whisper about Pentox from these guys, yet on the hospital websites I think they all (i'm sure the one at the best hospital) were the only people in the department with "Peyronie's Disease" clearly listed as one of their mentioned specialties.
LOL you take the pentox like candy, I did to and will be soon as well. I got bottles of the stuff, i loaded up on it thats how much faith i have in it. The stuff works and does something positive thats for sure! I got the generic pentox from wal mart, its about 30 bucks per month. I'm gonig to go get more backstock soon, I want at least 5 bottles of it for the long haul, on top of the bottle I'm taking currently.
The other day I was browsing MSN and saw an article on vitamin D and the lack of. It reminded me of george since he is always beating the vitamin D drums. Since we get it from the sun as one of the sources, I wonder if more people have a deficiency of it in canada than the lower 48 states in the usa, due to lack of sunlight?
Vitamin D (http://en.wikipedia.org/wiki/Vitamin_D)
Comeback
Jack,
Folks here are desperately watching the news and trying to keep abreast of any evelopment that will help. Pentox is truly unproven. Many of us think it will or should work, but it is likely to NOT work for everyone. But it has not been rigorously studied yet, and so most docs would not recommend something that is not yet studied like that. Us? Hell, we would sit in hot tubs, electroshock our dicks, then move to the heat lamps, then stretch and pump and take pills - all because it MIGHT help.
Docs do not have the pressure we feel - they are first supposed to do no harm, and all of the things we do can conceivably cause harm.
Tim
hey guys. i am 19 in india and have noticed a slight bend while erection. I am completely ignorant of all this stuff. Doing some research in the forum i found out some treatments like taking pentox and vitamin e. what should i do? should i apply callisto oil( vit e) as given on pdi's website, or should i be taking pentox ?how much does this cost in india and are there any side effectS? is it harmful?? any help would be great. thanks guys!
Tim,
You are right that first doctors should do no harm. Several people have stated pentox is a really safe drug, isnt this true? Isn't the risk of doing nothing alot higher than just taking pentox, especially for one whos in top notch shape?
Comebackid
Let me interject in the midst of this discussion about Pentoxifylline something that I have been meaning to post for some time. Although Pentoxifylline produces few interactions, there are a few that we should be aware of. Pentoxifylline is known as a "xanthine" compound. Therefore Pentoxifylline can interact with other "xanthine" compounds and cause toxicity in rare cases. Other xanthines are 1) Caffeine ie Coffee, Guarana, Yerba Mate and Tea. 2) Theobromine ie Chocolate and Yerba Mate. And 3) Theophylline ie Tea. An example of this potential interaction is documented here (http://www.ncbi.nlm.nih.gov/pubmed/2287557). And since all of these share a common base, anyone having a sensitivity to any of them should use care with Pentoxifylline. Now Tim can address ComeBack's question. We are all waiting! - George
Retrovrus,
I recommend that you spend some time reading the "Child Boards" here to get caught up on what people think - your introductory post's questions are pretty vague and "basic". We all started there ("basic" understanding) but to the extent that this website can help you, I think catching up there first is the fastest way to get up to full-speed.
Pentox is available in India.
In terms of side effects, all drugs have side effects, and some can be serious. I would be willing to risk side effects for a better erection. On the other hand, if I had had a hemorrhagic stroke, I might be more reserved about using a "blood thinning" medication.
The side effects are not too bad for the majority of people. The point I was making before is that a doc is not usually going to recommend it if it has not been extensively studied, no matter how safe it is - as the risk to benefit ratio cannot be well determined.
For me, though, having taken EVERYTHING else that has ever even sort of worked, the other options are limited.
Tim
Has anyone got a way to get BC/BS to pay for maintenance doses? It seems that there has been good results with maintenance doses. Our formulary only allows for 8 tablets per month. I was cutting 100 mg doses in 1/2 for a while to get 50 mg (GP's great suggestion), but I don't think I reliably could use that process for 5 mg maintenance doses (LOL).
I have to say that I agree with Tim on the whole Pentox issue. The reality is that we are all using treatments that *should* work or *seem* to work because of the dearth of Peyronie's treatment research. There simply are no high quality studies out there to show the effectiveness of *any* Peyronie's treatment. The current Xiaflex study is rare exception. Let's all hope it produces some good news! However, understand what the company that invented Xiaflex is going through on our behalf. They are getting ripped by investment advisors for wasting investors money on trying to use it as a treatment for Peyronie's because it doesn't represent a profitable market. This doesn't auger well for future testing of potential Peyronie's treatments. - George
McNally
I was talking about the use of Cialis, not Viagra when I mentioned 5 mg doses. The short half life of Viagra does not allow it to be a good routinely used drug.
Tim
QuoteYou might find Cialis works well and builds up a benefit over time (like two weeks, such that you can find a "maintenance dose" (ie 5 mg a day) that keeps you ready ...
Tim -
Thank you for the clarification. Your original comment (that I've tried to quote above) brought to mind something I heard or read someplace that there might be some benefit to daily/regular doses of Viagra. But the issue at the time, as I recall, was that BC/BS has monthly 8 tablet limits in the formulary (for both Viagra & Cialis). The question I was trying to ask is if anyone else had faced this issue with BC/BS and had found a way to get BC/BS to view daily doses of Cialis (or Viagra) as an appropriate (& covered!) treatment for any type of medical condition.
I have no idea what the appropriate daily dosage of Viagra would be nor if it would be considered an appropriate and possibly beneficial use of Viagra, and would, obviously, check with doctor before I tried this. I'm sorry if I implied otherwise.
McNally
I wonder about L-arginine and on the same subject, the usefulness of VED for me. As these methods aim at better erection.
If I do not have erection problems, would I have use of using arginine? I would use it just to be on the safe side but I am worried my body c.q. penis may get "addicted" to these things and may even find some sort of worsening when I stop using it.
Anyone here who has Diabetes or Pre-diabetes? And what supplements do you take? My Husband seems to be having more issues with Blood sugar since I put him on a variety of supplements (I randomly test his numbers since i have a Glucose meter & some of his aunts -uncles developed Type 2 in later years), I read somewhere that L-arginine can raise blood sugar, other places says it does not. I have been giving him 3 grams a day. Wondering if Pentox can have interactions with other supplements? I may be giving him too many--it is so hard to know what to do, all I do know is when he was not taking any vitamins or supplements, he ate worse and had better numbers. It just appears that he is having more readings in the Pre-diabetic range (between 140-199 after eating & after fasting 100- 125), since I started him on many supplements, co-incidence, maybe--any thoughts. Even modifying his diet to almost no sugar and little carbs, the numbers seem higher than they should be.
LoveMyHusband, It would be extremely helpful to know what supplements you are currently giving your husband. In general, supplements do not tend to affect blood sugar very much. The big thing is diet and exercise, but primarily diet. It is important to remember that it is calories that cause a rise in serum glucose. So just cutting sugars and carbs alone does not fix the problem. The body simply ends up converting fats into sugar and dumping it into the blood. The really important thing is to cut calories. Then you run into hunger. If you cut calories and end up with hunger, that defeats your purpose since when hungry the body stops burning calories and you run into the same problem all over. So hunger MUST be satisfied. Complex carbs play an important role in satiating appetite, so you may be cutting them too much. Simple sugars are the major villain. The waist is the barometer for all this. The formula is height in inches divided in half. The measurement around the waist at the naval relaxed should not exceed this number. Reducing this measurement will reduce blood sugar levels. In July 2004 my fasting serum glucose was 104. As of January 2009, I have it down to 93. I accomplished this mainly through getting plenty of complex carbs and avoiding sugar. The biggest source of help in this was the book "You on A Diet" by Dr Oz and Dr Roizen available via their website at http://www.realage.com. I highly recommend it. It really explains how different kinds of foods affect the body's metabolism and how things like simple sugars and transfats mess up the body. I also honestly believe that vitamin D deficiency plays a big role in driving one toward diabetes as well. But getting it right requires more than just taking the pills. It requires doctor monitoring to get it where it should be and keep it there. - George
To my knowledge, Viagra is only used on a daily basis for pulmonary hypertension, and it is then given three to four times a day at a dose that lowers the pulmonary blood pressure, but whcih does not cause priapism.
Tim
TIM,
That last post kinda hit me out of the blue ??? I think I am lost.
Exactly what question or comment are you responding to and... am I reading you correctly that sometimes Viagra is dosed up to 4 times a day as a hypertension medication ??? How have I missed that?
If so, that raises several questions one of which is how small do they cut the tablets (the makers of Viagra claim it should not even be cut)
Hawk, I've never heard that about Pfizer saying Viagra shouldn't be cut. What's up with that?
Nemo
Nemo, I Frankly think it is Pfizer's way of trying to make more money by selling more expensive small dose tablets rather than cutting 100mg tabs. It is not a danger or health risk like cutting a time-release tablet can sometimes be. They say that the active ingredient is not guaranteed to be uniformly distributed through the tablet. Even if this is true it would mean you get a little less in one dose and a bit more in the next. It may be an issue if you are cutting 100mg in half for sex (your big night of the year could be a fizzle ), but when you are cutting into thirds or fourths for a daily dose for control of TGF-B1 and blood flow (not erection) I think it is a moot point.
This whole thing may even be an urban legend, but I heard it from a doctor and never researched it.
The low dose tablets used for pulmonary hypertension are not even known as Viagra. They are sold under a different brand name by Pfizer. - George
Note to all:
Viagra was originally studied in Europe for hypertension and other heart related conditions. This study did not pan out, so the company decided to drop the issue and discontinue research on the product.
When they asked their trial patients to return the unused portion of their prescriptions, the patients refused. The company asked around and found out that the patients were experiencing very good erections where they had none before. The company then started research into using Viagra for ED. (Low dosages are now being used by some folks for maintenance ED, etc. I understand that there are other ED products quite similar to Viagra that are available off continent of USA - Mexico for one.)
And, we know the rest of the story.
Old Man
I prescribe sildenafil for pulmonary hypertension (PHN), not systemic hypertension, at a dose starting at 0.5 mg/kg dose of sildenafil every 4 hours. If this is tolerated and the PHN is not too bad, we often try to work them to a three times a day dosing.
In adults, up to 100 mg three times a day has been helpful in reducing PHN, though there is controversy in the adult literature about what dose is correct, and how much insurance companies will pay for.
I dose it as Sildenafil, not Viagra of Revatio. But there is more than one preparation (including liquid) that allow for precise pediatric dosing - and they ain't blue tablets!
Tim
Tim,
That is pretty interesting. I cannot even conceive of an adult taking 3 hundred mg of Sildenafil in a day much less doing it every day. Males must get an erection at the drop of a hat (I guess that actually describes most young males even without drugs). Doesn't it cause problems in the erection department which strangely in this case would be considered a side-efect??? And what about all the other side-effects, from stuffy nose, blue haze, etc.
This is my reply about supplements/prediabetic numbers... I was giving husband MANY supplements, list too long ! L-arginine 3 grams a day, 2 pentox, vit c 500mg, GNC multi vit, garlic, L-cartin?, fish oil 1000, small does vit D 500mg, horney Goat weed, tried Tongkat ali for 2 weeks & stopped. Anyway, now that I have reduced MUCH of this, now doing only 1 multi, vit C, 1 pentox, garlic and fish oil ONLY, I have seen a wonderful improvement in his numbers, for instance, last night he ate a HUGE meal full of carbs( We went out to eat & was served) -manicott, covitelli, cheesecake, salad, & 2 hours later his number was 84! Then 8 hours later after a fast it was 95. Why it went up baffles me, but he was getting numbers in the Prediabetic area when watching what he was eating -and it made no sense at all. I still dont' know whether it is the supplements or not, it could be his better eating habits is improving his testosterone levels--which in turn, they say, improves blood sugar levels. I will put him back on 2 pentox a day and see if all stays this way. And up some things, but I am leary of the L-arginine now as I have found many articles saying it raises Blood sugar levels. NOt a good thing if you have Type 2 in your family history. Oh and he is very thin, weighs less than 150, so reducing/modyfying his deit is a hard hard thing when dealing with someone already thin. He needs alot of protein, ALOT of good fats-the better carbs (still confused on all of this), It is sooo hard to find a book dealing with Diabetic eating when you are already THIN, and can not loose any more weight.
Most patients with pulmonary hypertension are going to die without treatment, so there is a lot of motivation to use something that works. The kids get titrated to erections - if they are getting them too frequently or for longer periods of time, then the dose is reduced. I do not know how adults are treated, but I too cannot imagine taking 100 mg three times a day!
Tim
Quote from: LoveMyHusband on February 15, 2009, 07:46:34 AMI was giving husband MANY supplements, list too long ! L-arginine 3 grams a day, 2 pentox, vit c 500mg, GNC multi vit, garlic, L-cartin?, fish oil 1000, small does vit D 500mg, horney Goat weed, tried Tongkat ali for 2 weeks & stopped.
I see nothing here other than perhaps L-Arginine that would raise blood sugar, in fact garlic, fish oil and vitamin D are known to lower blood sugar levels.
Quote from: LoveMyHusband on February 15, 2009, 07:46:34 AMAnyway, now that I have reduced MUCH of this, now doing only 1 multi, vit C, 1 pentox, garlic and fish oil ONLY, I have seen a wonderful improvement in his numbers, for instance, last night he ate a HUGE meal full of carbs( We went out to eat & was served) -manicott, covitelli, cheesecake, salad, & 2 hours later his number was 84! Then 8 hours later after a fast it was 95.
This makes perfect sense to me. Simple sugars cause a quick rise in blood sugar levels, lots of calories cause a much more delayed rise. Your husband ate a lot of calories, not to laden with simple sugars. It took time for the body to process this load of calories into blood sugar. All very logical.
Quote from: LoveMyHusband on February 15, 2009, 07:46:34 AMI will put him back on 2 pentox a day and see if all stays this way.
Trust me, Pentox is NOT causing his blood sugar to rise.
Quote from: LoveMyHusband on February 15, 2009, 07:46:34 AMAnd up some things, but I am leary of the L-arginine now as I have found many articles saying it raises Blood sugar levels.
One possible solution would be to try SANN VasoFlow in place of the L Arginine. With SANN VasoFlow you can often achieve just as much with 500mg of L-Arginine as you can with 3g of plain L-Arginine. This is because VasoFlow has added ingredients to make the Arginine more effective.
Quote from: LoveMyHusband on February 15, 2009, 07:46:34 AMOh and he is very thin, weighs less than 150, so reducing/modyfying his deit is a hard hard thing when dealing with someone already thin. He needs alot of protein, ALOT of good fats-the better carbs (still confused on all of this), It is sooo hard to find a book dealing with Diabetic eating when you are already THIN, and can not loose any more weight.
Have you looked at a chart showing healthy weight ranges? According to the World Health Organization, if your husband is less that 6' 3" tall, 150lbs is within the normal weight range, NOT too thin at all. That chart can be found here (http://en.wikipedia.org/wiki/Body_mass_index). Many people are naturally slender. Trying to fatten them up can cause diabetes. Diabetes is all about excessive calories. Bad fats are transfats (the worst) and saturated fats. Bad carbs are simple sugars and heavy starches (like potatoes). Read the labels. And don't worry about the weight issue as long as he is within the healthy range on the BMI table. We have a culture in which people are accustomed to obesity and they expect people to be plump in order to be healthy. That is precisely the reason we have so many health problems. - George
I just got some vitamins the equate brand multivitamin. Does it matter which brand you get? I'm hoping to get some of the vitamins and minerals like vitamin D that I'm probably not getting enough of.
Comebackid
I go with AOR orthocore as my multi and take 2-3 capsules. the problem with these multis is that generally its impossible to find one that is properly made and new research shows that what was once reasonable doses are now either too low or too high. i think it might be better to buy the ingredients seperately.
I've been taking the GNC Isomer vitamin E since September when I was diagnosed. My uro told me to take 200 IU per day, but it was recommended by some here to take 400 or even 800. For some reason I was thinking that the Isomer was 200 IU and I've been taking 2 a day, Today I bought a new supply and noticed that it clearly says 400 IU on the bottle. It says 400 IU d-alpha tocopherol and right under that it says 391 mg. total tocopherols (Proprietary Isomer E blend of d-alpha, d-gamma, d-delta and d-beta tocopherols). It also says on the box that it supplies all 8 tocopherols and tocotrienols. I know I've asked this question before and Geoge999 replied that the Isomer E is a good full spectrum delivery system. I'm wondering now if I should cut back to 1 per day (400 IU) or continue to take 2. I also Googled "full spectrum vitamin E" and came up with the Swanson Ultra. It has a breakdown of exactly the amount of each component: 1 softgel= 100IU from d-alpha toco with mixed tocos supplying: d-Gamma 210 mg, d-Delta 78.4 mg, d-Alpha 66.7, d-Beta 3.5; Carotech Tocomin Full Spectrum 64.2 mg. Tocotrienol Complex supplying the following tocotrinols: Gamma 35.5 mg, Alpha 18.5 mg, Delta 9.3, Beta 0.9 mg. The suggested dosage of the Swanson is 1 to 2 softgels per day and the isomer 1 per day. Swanson definitely goes into more detail regarding the contents but does anyone have an opinion as to which of these (GNC or Swanson) would be the most beneficial. The Swanson is definitely more expensive (100 IU 26.99 plus shipping, GNC $25.99 plus tax at my local GNC). I realize that I'm not receiving medical advice on this forum but I'd be interested in opinions, especially from George, who seems to have done much research in this area. Oh, also, the Swanson has 60 softgels and the GNC has 90 per bottle, so the GNC is definitely the best value, but I want to take the best one I can find, since this is the only treatment option my uro has offered at this point. Thanks.
Fred
Hi Fred, Personally (just my opinion) I think that all of the good vitamin E products are pretty much equal. For sure the higher priced ones like Swanson, but not enough better to matter a whole lot. - George
George,
Thanks. My opinion also. What about the dosage? I'm taking 2 of the 400 IU GNC per day.
Fred
Fred, I settled on 400-800IU/day. I am not taking that much now because I am on Pentox and like to take some fish oil and since all of these are blood thinners, I prefer to alternate back and forth between the E and the fish oil. But 400-800IU is pretty optimal in terms of benefit. Adventurer that I am, I actually boosted it up to thousands of IUs per day for a couple of months to see what would happen. For a couple of weeks the effect was phenomenal. And then, alas, it was as if my body developed a tolerance for it and the effect was no better than 400-800IU. The risks (and there are risks associated with that amount) were patently not worth it. Lots of risk and zero real benefit. There is a reason why most docs don't recommend any more than 800IU. - George
Just another note on vitamin D to remind all that the major benefits are associated with blood levels of 50-70ng/ml, NOT just the fact that you take vitamin D. Just taking vitamin D won't likely hurt you, but unless you know your blood levels, it is no guarantee of benefit. So I encourage those who are really serious about vitamin D to get tested and to know where you are at with it. Additionally, there are emerging indications that the softgel form is immeasurably better than the tablets. I found this blog interesting in this regard: http://heartscanblog.blogspot.com/2009/02/what-vitamin-d-form.html (http://heartscanblog.blogspot.com/2009/02/what-vitamin-d-form.html)
In any case the amazing capabilities of vitamin D just keep coming:
QuoteCopyright © 2009 Mosby, Inc. All rights reserved.
Featured new investigator
Low serum 25 (OH) vitamin D levels (<32 ng/mL) are associated with reversible myositis-myalgia in statin-treated patients
Waqas Ahmed, Naseer Khan, Charles J. Glueck, Suman Pandey, Ping Wang, Naila Goldenberg, Muhammad Uppal and Suraj Khanal
Cholesterol Center, Jewish Hospital of Cincinnati, Cincinnati, Ohio
Received 15 October 2008;
revised 5 November 2008;
accepted 7 November 2008.
Available online 6 December 2008.
Our specific aims were to determine whether low serum 25 (OH) vitamin D (D2 + D3) (<32 ng/mL) was associated with myalgia in statin-treated patients and whether the myalgia could be reversed by vitamin D supplementation while continuing statins. After excluding subjects who took corticosteroids or supplemental vitamin D, serum 25 (OH) D was measured in 621 statin-treated patients, which consisted of 128 patients with myalgia at entry and 493 asymptomatic patients. The 128 myalgic patients had lower mean ± standard deviation (SD) serum vitamin D than the 493 asymptomatic patients (28.6 ± 13.2 vs 34.2 ± 13.8 ng/mL, P < 0.0001), but they did not differ (p > 0.05) by age, body mass index (BMI), type 2 diabetes, or creatine kinase levels. By analysis of variance, which was adjusted for race, sex, and age, the least square mean (± standard error [SE]) serum vitamin D was lower in the 128 patients with myalgia than in the 493 asymptomatic patients (28.7 ± 1.2 vs 34.3 ± 0.6 ng/mL, P < 0.0001). Serum 25 (OH) D was low in 82 of 128 (64%) patients with myalgia versus 214 of 493 (43%) asymptomatic patients (χ2 = 17.4, P < 0.0001). Of the 82 vitamin-D–deficient, myalgic patients, while continuing statins, 38 were given vitamin D (50,000 units/week for 12 weeks), with a resultant increase in serum vitamin D from 20.4 ± 7.3 to 48.2 ± 17.9 ng/mL (P < 0.0001) and resolution of myalgia in 35 (92%). We speculate that symptomatic myalgia in statin-treated patients with concurrent vitamin D deficiency may reflect a reversible interaction between vitamin D deficiency and statins on skeletal muscle.
Abbreviations: BMI, body mass index; CK, creatine kinase
Full study:
http://www.science-direct.com/science?_ob=ArticleURL&_udi=B83WW-4V3567C-1&_user=10&_coverDate=01%2F31%2F2009&_rdoc=7&_fmt=high&_orig=browse&_srch=doc-info(%23toc%2333797%232009%23998469998%23781086%23FLA%23display%23Volume)&_cdi=33797&_sort=d&_docanchor=&_ct=13&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=1d07da119cdd5daa6ae2ad8b62c0b112 (http://www.science-direct.com/science?_ob=ArticleURL&_udi=B83WW-4V3567C-1&_user=10&_coverDate=01%2F31%2F2009&_rdoc=7&_fmt=high&_orig=browse&_srch=doc-info(%23toc%2333797%232009%23998469998%23781086%23FLA%23display%23Volume)&_cdi=33797&_sort=d&_docanchor=&_ct=13&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=1d07da119cdd5daa6ae2ad8b62c0b112)
I've noticed when on pentox before that my mouth is dry and some constipation can occur if I don't drink alot of fluids, has anyone else noticed this dryed out sensation?
I have noticed both and also more frequent incidence of acid reflux as well. Not willing to chalk that up to Pentox though, as life is currently very stressful.
Quote from: ComeBacKid on February 20, 2009, 02:17:52 AM
I've noticed when on pentox before that my mouth is dry and some constipation can occur if I don't drink alot of fluids, has anyone else noticed this dryed out sensation?
Do you notice better erections or bigger hand while in the flaccid state?
Comebackid
Quote from: ComeBacKid on February 21, 2009, 05:17:56 PM
Do you notice better erections or bigger hand while in the flaccid state?
Comebackid
I presume you meant bigger hang.. Well, as a matter of fact yes. I am currently taking Pentox twice daily and L'Arginine(500 mg) twice daily. I use Cialis not on a routine or daily basis, but as required. I have started to use a VED as well but find it very difficult to use the small cylinder given the enhanced flaccid state. As I joked to Old Man, I need to go out and exercise in the Canadian winter or take a cold shower before being able to use the small cylinder. I really do not notice any erect difference but so far no new plaques or no worsening of existing plaques and for me, that is success enough to continue this course of treatment..... How about you any acid reflux or other digestive issues?
Regards
Mike
Hi everybody :) Im Freddie, and I just signed up.
I couldn't fit in the A cylinder as well man. Thats probably normal. I only get acid reflux if I don't take the pentox with food. I'm just starting it up again, before I was on it for a year and saw results from it. After I stopped for a year and a half my gains slowly got worse and I slowly lose size, mainly after about six months of holding my gains. My penis has also noticeably become harder and shrunken again. This time I plan to stay on pentox for as long as possible, possibly years....
Comebackid
Ive read alto of posts, and I'm absolutely shocked that I haven't seen anybody talk about a website called actionlove.com Ive been improving gradually now for 18 months- it took me 18 months prior to figure out how! The only real way to heal is to boost you testosterone level naturally using dhea 25- 75 mg a day, 500mg tribulas a day, and 1500-3000 mg L- arginine, fish oil 3 times a day, and a complete vit pack either from the site or gnc or somewhere. Ive recorded all my trials, and one of the most important rules is to not ejaculate more than 2 times a week- this retains potency for nightime erections. You also have to erect once a day- morning or evening to get fresh blood in penis.But if your in a bad condition, wrapping with warm wet towel may have to be the best you can do for some time(and relying on nightime erections) In time, your scars with soften, and than they begin to dissolve. Go to ballooning techniques on the site. You have to balloon(erect fully) and massage penis very lightly for no more than 5 minutes a day, than massage by rubbing very lightly with his vip cream. I prefer to erect at evening. In morning, I don't erect, and I just rub cortisone-10 onto my penis, and wrap in a wet towel (100-105 degrees) for 5 minutes. This does a great job softening scars. You have to take a day off from cortisone cream every 3 days to avoid thinning out tissue. Practice ballooning, but do not massage more than 10 minutes a day- or you will have too much inflammatory hormones which inflames tissue more, and usually triggers ejaculation. I'm not an expert, but I hope this helps everybody out. It takes a long time to soften and dissolve scars and improve condition. Id say 1-3 years. Cardio exercises is very helpful too. Also- do not try strecting or bending back. This will only make it worse. Ill write more soon.
I came across this webpage years ago, it looks like its run by an asian doctor who struggles with english. I researched it for days and found it to be exremely shadey with its own "store," selling powders and pills with fancy innovative sounding names. Freddie, where you from? Do you have Peyronies Disease? When did you get it? I'm sure some of our members will check out this site and go over it thoroughly, we are good at rooting out all the junk.
Comebackid
Just type actionlove into the search function at the top of the page and you will see that it has been discussed a bit back in 2005 and 2006. I guess it hasn't worked that well for those who may have given it a try to be worth pursuing further. I, personally, prefer treatments that have some degree of scientific evidence indicating that they might be effective. I looked over the actionlove sight myself some years back and found it to be mostly hearsay and marketing. I wasn't very convinced and I'm still not convinced. For me to shell out money on some sort of pill or cream, I need some scientific evidence in advance that it is going to work. I also prefer to get my guidance from a medical doctor, not a PhD who has no medical training. Peyronie's is very difficult to treat and that creates a perfect environment for hucksters to hawk their wares and empty our pockets. The easiest way to do that is by astroturfing. Astroturfing is a practice of visiting websites where Peyronie's sufferers congregate and faking stories of successful treatments to draw in sales. Don't get me wrong Freddie. I am not accusing you of doing this. But I am going to have to see some evidence that you are not doing this in order to take you seriously. Its the old adage that if it sounds to good to be true it usually is, and your story sounds pretty good and a little to easy when it comes to dealing with something like Peyronies. But anyway, welcome to the group. - George
Hi guys- Yes- I have peyronies- but no joke- it does work- if you think its a scam- thats why I said to get your vit from gnc if you wish- because the practices really work- but I figure people would not believe it, because the doctor sells his own products and you would think its a scam- injections damage the tissue more- when tissue is damaged- protein collagens (scar) replace good tissue- but like a scab on your arm- the scab must be warm and moist(coveredd by bandaid) to heal quicker- your penis needs blood(erection) but naturally- when you have ample hormones(test) you cant get erection, and massage it on bottom with your fingers on both sides of penis, and a test burst gives you a more powerful erection - high pressure blood flow to penis to deliver fresh blood and nutrients- Im here to help-I got peyronies 6 years ago when I had seminal dysfuntion from a low test level, and I would squeeze harder when masterbating to come, but couldnt!!- than it inflameed and became like a big hung sausage- still couldnt come- so I was like milking my inflames penis to come and stretched the tissue- I honestly didnt Jelq- but I am recovering from same symptoms- ok That site is no nonsense I tell you - write to him. If you think its a money maker- than use products like gnc vita pack. wb Freddie
Basically, my penis was like a rock in its flacid state, and curved about 20-30 degrees to the right, my entire penis was collagen scar, but much worse on the right, I think I banged it years ago- but honestly- I realy dont f-in know lol you know how it is ??? most of the damge was from squeezing it really hard when I couldnt come- (inflamed prostate made me have sexual arousal though)now it is 10 degrees and keeps improving, and 75% of penis is back to soft in flacid state! Look ,I know your frustration of whos b-s ing. I have calenders for the last 3 years recording everything- Ive been to 5 US doctors- What a f-ing joke!!!!!!!!!! Take vitE?? yeah right- good luck!! Switch hands!! Good luck!! You know whats a scam- The Peyronies Disease Institutes streching video- trust me- do not try stretching it back- Although- their treatment methods most of them are correct. And I was going to switch to them, but I was getting results from Dr. Lin on the Actionlove site- Thank Goodness- because when I saw when they came out with a video to stretch your penis, I knew they were lost in the woods wb Freddie
i tried to read the action love site but it made no sense - when he says no stretching does this mean not to use a VED - also what is ballooning??
I ALWAYS take Pentox with food, in my case very easy to accomplish as I am only popping them twice a day. Once my doc has evaluated me after 3 months of usage I plan to get up to the Lue/Levine recommended usage of three times daily. My doc was working from a large meds book that specified the optimal doseage as 2 or 3 pills a day (of course as related to the usual prescription of this med for leg circulation issues) and so wanted to monitor me on the lower acceptable doseage first prior to bumping up to the Levine doseage I presented him. 3 months is up in March.
Freddie, your posts read a bit like an advertisement for actionlove. Most of us have found him to be a quack.
Tim
Listen all- If you think its an advertisement, than use vitamens from elsewhere, but use his priciples- Your penis has dht receptors in them-the idea is to regrow penis back- like you grew it during puberty- as far as lumps- I think you can improve them, and give them elasticity- I didnt have a lump - but I sort of did- my entire penis was like a rock in flacid, and skinny and in hard, and on right bottom I had a mass of collagen scar from trying to strech back a minor curve-only to make it worse-as far as what you guys call scientific data- hes the ONLY one that makes sense! Hes the only one that even shows what a normal erection looks like. I honestly dont know if a real lump can be fully dissolved, but I know through my own experience it can be improved to its full potential through his theory. Any cutting is permanent damage, and should be a last resort- any injection with a needle is permanant damage and should be avoided. I had immediate ejaculation when my penis was in a rock flacid state, because of inflamatory hormone which triggers immediate ejaculation. Look, Ive read so much of that site, and its the real deal, and his scientific data, evidence and facts put any other doctor Ive seen or visited to shame. Yes, he speaks chinese- who cares! His english isnt perfect. I had my doubts too- many doubts- I was always so paniced that I couldnt stop erecting my penis to see if it was getting better- than I would always ejaculate- This would hamper my progress, because one of the biggest things to follow is to limit ejac to 1-2 times a week to preserve your hormones to get nightime erections for healing. The hot towel wraps (105 degrees ) help soften scar tissue, and than reduce pain(5-10 min) 3 times a day- I than, through my own personal preference, take the towel and submerge it in cold water and wrap penis- oh how nice that feels! At the same time I use the rest of the towel on my testes(cool, not freezing) to promote teste production. Ill write more- there is so much to cover Freddie
Also , before I go- Dr. Lin does recomend VED ONLY if you cannot erect penis naturally- but DO NOT pump 100%! I believe he recomends pumpimg about 50% for about 2 minutes-release- repeat 4 times I think once or twice a day- This is to bring fresh blood, hormones, and oxygen into penis to heal- not for sex. You should always be taking vitamens(ex Gnc mega men vitality, l-arginine 500-1000 3 times a day(as long as you dont have herpes- will trigger outbreak) fish oil 1000mg 3 times a day, dhea 25-75 mg day, Tribulas to boost test if needed 250-500 mg a day, 3mg melatonin, b-complex, 5-htp, 25-50mg dhea at bedtime for nightime erections. Cardio excercise, at least walking, and light weights are important for mind and body every day-not only does it help with depression, it will keep you much more sane- because your taking test boosters for nightime erections- but when you excersice, the muscles distribute test throughout body, otherwise, just sitting idle- much of the test sits in your brain , and you will be even more crazy- also excersise promotes your bodies own hormones, rids toxins that yes may be even in the vitamins, and gets rid of inflamatory hormones!! If you dont trust the site- than buy a cupping set online to give your muscles a deep tissue massage--Circulation is VERY IMPORTANT!!!!- Freddie
your case is very similiar to mine- just read your 2 posts- if your the only man here I can convince that Dr. Lin is not a quack like every one else thinks, than at least I have done my good deed. Rule one- stop masterbating! since you have a curve, masterbating will be constantly stretching the scar. Ejaculate no more than 1-2 times a week- mark it on a calender- never ejac 2 times in one day- every 4 days is idael at most- I just posted on main page more advice. Listen Kenny, Im new to this site, Ive been reading actionlove site for 3 years- what Ive seen here unfortunatly is most guys taking the very wrong path. Lins site will clearly explain how injections, strething, and over ejaculating are the worst things to do. Your ejac volume is a real measure of your test level- ejaculating watery seman is very bad- you will def need test boosters- I recomend always taking at least 50 mg dhea, 250-500 mg trib, and the gnc vitality pack- the last thing you want is to be sexually exhausted. The balooning is complicated Id wait 3 days without ejac, get erection, and see if when you massage base of penis, you feel a surge- you may have to wait few weeks and avoid ejac and take test boosters to baloon-I should write a book to explain in laymens terms how to do this- I have always been into science- thats how I understand Dr. Lin Also- Viagra and all those erction pills when you are deficiant of your natural hormones induce an unatural erection, and over strecth the tissues and veins due to deficiancy of prostagladin E-1 Freddie
Freddie, While some of what you say makes good sense and is actually stuff that many of us are doing already and other things you are promoting like hot towel wraps make sense and are good suggestions, a lot of the other stuff is just so much nonsense. The whole thing about tribulus promoting testosterone for example. The reality is that tribulus has been subjected to a significant amount of clinical research and it has NEVER demonstrated ANY ability to increase testosterone. Claiming that it does is NOT science no matter how scientific it may sound. And this is just one example. Some of the things you are suggesting are actually potentially dangerous. DHEA and Melatonin for example. DHEA messes with hormones and Melatonin IS a hormone. Melatonin experts warn people not to take more than 1mg. And using melatonin on a regular basis can cause problems. I myself had a very serious autoimmune reaction from just 1mg of melatonin. The risks from continued us of DHEA are significant as well and there is no scientific evidence that it can provide any benefit. And the idea of testosterone sitting on the brain, that is just to ridiculous to even comment on. - George
Quote from: Freddie on February 22, 2009, 12:29:31 PMYour ejac volume is a real measure of your test level- ejaculating watery seman is very bad- you will def need test boosters- I recomend always taking at least 50 mg dhea, 250-500 mg trib, and the gnc vitality pack- the last thing you want is to be sexually exhausted.
Anyone concerned about their testosterone levels should get them tested by their doctor. The advice Freddie is giving is quackery pure and simple. Talk to ANY medical doctor and they will tell you that this is nonsense. ALWAYS get your advice from a qualified licensed medical doctor, not from some anonymous person on the Internet! - George
I'm only taking two pills a day now to, so taking it with food is easy. I will bump it up to 3 pills down the road, but for now I'm slowly wading back into pentox. I've got faith in this drug cause I've seen what it did before.
Comebackid
George listen- its smart to take for instance ex the gnc vitality pack to get as many NATURAL test boosters IF YOU NEED THEM to get a NATURAL erection to deliver fresh blood oxygen, nutrinents, for softening scar and eventually dissolving. Test levels are responsible for how much muscle, and energy, and yes- I know from experience that over ejaculating 2-3 times a day will completely deplete you of essential hormones, and drive your test level to the ground. Once this happens, yes you may be able to erect, but you will be erecting without the sufficiant hormones and prostaglandin E-1 to sufficiantly support natural streching of the tissue, veins in penis and for healing. You will also get manopause(night sweats)Over ejaculation will lead to a watery seman, and inflamation of the penis, testes, and prostate and screw everything up. The melatonin is over the counter- OK so you have a bad reaction, Im sorry- most people dont- so than you cant take it. The panic and stress from peyronies, we need something to help sleep- natural drugs- not drugs that screw up the liver(the primary sex organ responsible for converting hormones for NATURAL erection) But if say a 20 year old kid is popping boners left and right- than he dont need boosters, but most of us do after 30-35. A hard erection is necessary for healing. Doctor prescribed test boosters should only be used is your testes cant get erection from natural drugs. Given too much dose of test replacement will shrink and disable your testies.
Freddie,
You are either a Dr. Luv shill or you have been duped without the knowledge necessary to even suspect the truth. You have not proven ejaculating depleted hormones, nor has anyone else. Did you have two thousand men with scientific hormone measurements divide into random groups and monitor hormone levels compared to rate of ejaculation? No! You just jumped to conclusions by making some arbitrary connection between your behavior and your interpretation of what you think your hormone level might be.
If you want to learn then read. Learn how to evaluate evidence and some basics about rational thought and argument. It will serve you not only with Peyronies Disease but in life. Dr. Love is truly the closest thing there is to a comedy routine on the subject of sexual health. Your belief in him does not change that. Defending him more only makes you look more foolish.
For your reading, I suggest you start here and read this as many times as necessary until it makes sense.
http://www.peyroniessociety.org/evaluating.htm
Who was the fellow who talked about changing the structure of the forum so one conversation was put underneath the starting topic? I could see how here that might help as mikesb and I are talking mixed in with other posts from people talking about actionlove. However you can see how we always drift off topic and new people add their two sense into a conversation which leads to something else...
As far as actionlove goes, you can tell alot of the talk on there is nonsense jibberish talking about massages and "ballooning," what the he@$# is ballooning? Its not my birthday I'll pass on that. Where are the studies and evidence from that site? Perhaps the doctor should come on here and defend his product or explain his product if he believes in it...
Comebackid
Dr Lin indicates on his own web site that his PhD is in engineering, NOT in medicine and not even in a related field. It is obvious from the content of his web site that he has no training in medicine and specifically no training in urology. Additionally, he has no research to back up his strange beliefs on these things.
Note that Freddie makes some very strange assertions such as the whole ridiculous "watery semen" stuff without any research to back them up. These are things that any reputable urologist would find laughable. In fact, studies have been done with Maca that demonstrate that it enhances and increases ejaculations but does not change testosterone levels.
Quote from: University of Michigan Health SystemPreliminary studies have shown that maca can increase libido in healthy men. It does this without influencing levels of testosterone or any other sex hormones. Healthy men who take maca have also been shown to have increased semen volume, increased sperm counts, and enhanced sperm motility.
Show me one reputable publication that indicates watery semen is related to low testosterone. He can't, because it doesn't exist.
Freddie also somehow assumes that Peyronie's is directly linked to low testosterone levels. While I would accept that low testosterone levels probably aggravate Peyronie's, I don't think everyone with Peyronie's has low testosterone levels. In fact I would wager that there are people around with Peyronie's that have no problem getting perfectly normal nighttime erections without regard to their frequency of ejaculations. Peyronie's is caused by a physiological problem, not by some sort of aberrant sexuality as Freddie implies. The whole point here is to sell people on Dr Lin's penis cream. - George
Hey Guys- I did check out that link you gave me, and Hawk- Im not into talking smack, but perhaps you should read it again- there is no eveidence of positive results on any of those medicines. Im here with an open mind with this ridiculous problem, so chill out. Now take a deep breath and listen- Your penis is made up of little baloons that fill up with blood in the chambers, and tissue. With the injuries we have sustained, some of these small baloon were damaged and the surrounding tissue was strecthing by bending, snaping, or whatever- protien collagen(scar tissue) which is inelastic replaced the good tissue. When you try stretching this scar tissue, all your doing is inflaming the penis, which may numb it, reducing pain, but after the inflamation settles- you got MORE scar tissue. The whole dam theory isnt frieken brain surgery damit! You have a damaged penis, so you need to get natural erections to bring fresh blood, oxygen, and nutrients to heal, and rejuvanate the broken baloons. Balooning is getting an erection and than massaging the base of penis on left and right side with your thumb and pointer all the way at the bottom by testes- IF you have sufficiant hormones- you will get a test burst shooting up penis. This powers up your penis to its full potential sending blood and nutrients-as far as ejaculation frequency- it depends on you! If you come every day, and still pop boners left and right, than your fine, but if your having trouble getting erections- you need hormone boosters-Again- erections heal the penis- especially nightime erections Freddie
George- I told you gnc has the same products from his site if you think its a scam- The other thing is, maybe my case isnt as bad as others. I wish we all had perfect penises here, but we dont and thats why we are here. I just know that Ive had great progress by doing the Lin techniques. and came here to share my progress. Ive seen this site in the past. You really should ponder though- How could brining fresh blood, oxygen, and nutrients to the penis bad for it? The whole idea of ejaculating 2 times a week is so you can erect it a couple times a day, but it should be just a little stimulation, when looking at porn or whatever- not sitting there for 20 min trying to get one- thats why your hormones should be at their peek.Erections Even just 1-2 times a day, a strong erection delivers the goods.
Freddie, Peyronie's is caused by an autoimmune reaction. Immune cells inflame the tissue by spewing cytokines into it. This has been proven by a significant amount of research. No amount of oxygen or hormones is going to help. You have to stop the autoimmune reaction.
Quote from: International Journal of Impotence Research - The Journal of Sexual Medicine
lPathophysiology of Peyronie's disease (http://www.nature.com/ijir/journal/v14/n5/full/3900875a.htm)
Studies of Peyronie's patients have implicated an auto-immune component. It was shown that Peyronie's disease patients had at least one abnormal immunologic test (75.8%), alterations in cell-mediated immunity (48.5%) and in markers of auto-immune disease (37.9%). Another study found higher than normal levels of anti-elastin antibodies in the serum of patients with Peyronie's disease, suggesting an autoimmune etiology. It is likely that a certain proportion of men in this age group respond to mechanical tunical stress and microvascular trauma with an aberrant or hyperactive wound healing response. Thus, there may be a subpopulation whose genetic background is such that response to wound healing predisposes development of Peyronie's plaques.
Before you can successfully treat a disease you have to understand what is causing it. It is very obvious that you don't have a clue. As I said before, some of the things you are suggesting could very well be helpful, but the bulk of what you are coming up with is nonsense. You need to start reading stuff written by REAL doctors and not by people pretending to be doctors. - George
Hawk -I went to 5 "real doctors" they can tell what caused it all they want- but to treat it?????? The concept is to heal the scarred tissue from the adjacent good tissuewith nitrous oxide from l arginine, and deliver nutients to tissue. Its sort of like a wound or old scar- the outer part doesnt soften and dissolve fist- the adjacent tissue does. But it takes a long time for the penis, because the tinty blood baloons that fill up that were damaged need to be rejuvenated, and than they need to expand and grow
I meant George, not Hawk on that last one-
Quote from: Freddie on February 22, 2009, 08:06:26 PMGeorge- I told you gnc has the same products from his site if you think its a scam-
And my response was and still is that it is the cream that is the scam. The other stuff is incidental. Some of it is helpful. Some is not. Some is helpful to some guys and not to others. But his site IS a scam. He is pretending to be an expert on Peyronie's and he is not. He is misusing his Dr title. He is an engineer, not a medical doctor. He should not be using his title to promote a treatment something he obviously knows nothing about. It borders on practicing medicine without a license. Its that simple. And you are a fool for following him and promoting his site.
Quote from: Freddie on February 22, 2009, 08:06:26 PMThe other thing is, maybe my case isnt as bad as others. I wish we all had perfect penises here, but we dont and thats why we are here. I just know that Ive had great progress by doing the Lin techniques.
If you are doing well, then I am glad for you. If you want to talk about any of the things you are doing to achieve those benefits, you are certainly welcome to do so here and we will engage you on those issues. Just please don't promote actionlove on this site. Because, while some of the things he suggests may be helpful, his whole approach is unscientific and unethical, at least in my personal opinion, and the sooner you detach yourself from that approach the better off you will be.
Quote from: Freddie on February 22, 2009, 08:06:26 PMHow could brining fresh blood, oxygen, and nutrients to the penis bad for it? The whole idea of ejaculating 2 times a week is so you can erect it a couple times a day, but it should be just a little stimulation, when looking at porn or whatever- not sitting there for 20 min trying to get one- thats why your hormones should be at their peek.Erections Even just 1-2 times a day, a strong erection delivers the goods.
The PROBLEM with this is that is simplistically assumes that controlling ejaculation frequency and hormones can somehow enhance erections. The reality is that erections are very complicated physiological processes and a multitude of things can enhance or diminish them. A healthy man should have nightly erections that are sufficient to address Peyronie's issues. This should not require porn to achieve. If that is lacking, the guy in question needs to see a urologist to try to find out what it is that is causing the problem. None of the supplements you have mentioned actually increases testosterone levels except perhaps DHEA, and I would be awfully careful with that because it can have long term side effects that might not be pleasant. There are really only two types of supplements. One type is useless and benefits result only from a placebo effect. The other type is actually a drug being sold as a supplement. And ALL drugs, even the ones you buy at the health store can cause side effects and even leave you worse off than you started. I use supplements myself, but I NEVER suggest that since they are supplements they come without risk. When I see people promoting supplements based on some assertion of safety, I shudder. Effective supplements have risk and should be used judiciously. And trying to mess around with Testosterone when it may not even be the problem in the first place is insanity. I am all for warm towels, no problem there, but DHEA? Forget it. If you really want to get your hormones straight you should read up on Vitamin D. Huge amounts of it are generated by full summer sun AND it is a pro-hormone. And the hormone it generates in the body is the mother of all hormones in the regulatory sense. Get more vitamin D and your hormones become better regulated. You should also read up on the omentum, which is the fatty organ in your abdomen that gives people big guts. The omentum converts testosterone into estrogen by creating aromatase enzyme. The bigger the omentum the more efficiently it empties you of testosterone and fills you with estrogen. Getting more vitamin D and shrinking your gut are healthy ways to increase testosterone levels. Stuff like DHEA and HGH are not. But remember, the problem may easily be something other than low testosterone. And ONCE AGAIN, you are NOT going to stop Peyronie's without somehow arresting the autoimmune process. Only things like Penoxifylline and Vitamin D can do that. Other things can help and I am all for that, but ONLY autoimmune targeted drugs and vitamin D can stop an ongoing autoimmune process. So don't try to advertise the actionlove stuff as some sort of cure. ITS NOT! - George
PS - Freddie, the "tiny balloons" that fill up with blood are NOT damaged with Peyronies. It is the tunica albuginea that is damaged by an autoimmune process and thus does not expand. You need to understand better the physiology side before you try to analyze this. - George
Hawk- Your really confusing me, and pissing me off. First off, do you HAVE Peyronie's? Second, did you or any member on your site ever try Dr. Lins techniques? Third, before you think you have the smarts to be a wise guy to me and call me a Doctor Lin shill, whatever the hell that means, what do you know? Are you promoting that injection drug here? (Vermidil?)Every single patient here who used it including Old Man said it makes Peyronie's worse! It gives them MORE lumps and nodules- And I - not you Hawk know the scientific reason why. Every time you inject a needle into your penis it burst the tiny blood baloons that fill up the chambers permantly, leaving a knotty scar that cant be softened or repaired. The erection needle does the same thing. The more injections, the more hard scars. When I came here, I was under the impression that this was a support and research site with an open mind to NEW discoveries for cures for peyronie's. Did you see the headline for this page Hawk? Oral Treatments - Vitamins, Prescriptions , Herbs, Supplements - Have you seen me post on any other page- NO! Because this is the treatment that has worked for me. If I were promoting bussiness, Id be all over your pages. Freddie
Freddie, When you make statements like "Every time you inject a needle into your penis it burst the tiny blood baloons that fill up the chambers permantly, leaving a knotty scar that cant be softened or repaired.", either provide a reference to a scientific journal or SHUT UP. It is really clear that you don't know what you are talking about. Hawk does not and has not ever recommended injections. And everyone here knows Hawk and his story. On the other hand, none of us know you very well other than the fact that you suddenly drop in from out of no where and pretend to have all the answers. This site, unlike Dr Lin's site, exists to serve guys with Peyronie's. Dr Lin's site is a hodge podge of soft porn and claims for treatments of every kind of sexual problem known to man. You are overbearing and annoying. Either be civil or go away. - George
George, I dont care if the guys a f-in plumber! The guy had problems when he over pumped with a vacum device- leaving him absolutly no choice but to spend every aching minute of his life to cure himself. Thats how he got into health and urology as much as he did. Look, Im not here to get high blood pressure from you guys ok- if you dont get, than you dont get it, and thats fine. I try telling you the things that work for me- not telling you to buy his products, and your still acusing me of prmoting his products! The products, vitamins, herbs, oils, arginine are needed George. What Im saying is, buy them else where than. As far as the cream, buy non commercial creams w the same ingrediants. Try peppermint cream w alcohol- the cream is all about bringing the heat to soften scar ok Freddie
Look George- forget the pills he sells- look at the facts- your penis whether you like it or not is made up of tiny baloons that fill up during erection. No, I dont know Hawks story, but I do know his and yours attitudes, an closed minds. I came here with obvious new info to you guys to help solve this problem. You guys wanna kick me off the site, see if I give a crap. I dont need the high blood pressure >:(, I have enough problems obviously.
Freddie, It is not a matter of just the pills and the cream, its that you are making a lot of statements that are factually incorrect. And you are totally unwilling to learn or accept correction when you are wrong. As for Dr Lin, either you only know what he has chosen to tell you or you are, as Hawk has speculated, an insider. Its one or the other. But much of what you have posted is not based on facts. The pills and cream and towels we can discuss and agree or disagree on, but the other stuff is over the top. And if that issue raises your blood pressure then you probably need to find another site to express your opinions on this. - George
Ok just wanted to ask if taking vitamin d3 1000 everyday could possibly calcify my plaque. Im also taking mk 7 cause I heard it could stop the calcification of the plaque. I don't want to risk getting this worse. Also wanted to know what other vitamins or supplements should I go buy that are helpful for peyronies.
George, Im not here marketing for him- ok than maybe this site is for marketing the drugs you guys believe in and the doctors you recomend? Why dont you tell me what you recomend I take than? Id like to know. I have an open mind, and Ill listen respectfully Freddie
Despise, Don't listen to Freddie. Peyronie's has absolutely zero to do with masturbation. The penis, like any other part of the body normally heals when injured. Plenty of people masturbate and do all sorts of other weird things and never ever develop Peyronie's. There is not a shred of scientific evidence to show that masturbation results in Peyronie's.
As for vitamin D3, it will NOT calcify your plaque. I have been taking 8,000 to 12,000IU a day for nearly six months now without any bad effect on the Peyronie's. I do take vitamin K with it and recommend you keep on taking it. Vitamin D has been shown in research studies to be effective against multiple forms of autoimmune disease. For it to be optimally effective you need to take a large amount like 8,000 to 12,000 IU. You also need to have your blood calcium monitored for the first couple of months to make sure it is not going up. And you need to have your blood levels of vitamin D also checked every six months or so. The blood calcium tests are very inexpensive. The vitamin D tests are around $100 or you can get a do it yourself test kit over the Internet for $70 if you don't mind pricking your own finger to get the blood sample. The vitamin D info is available at vitamindcouncil.org and grassrootshealth.org. - George
George, I gotta hit the hay. But please be more open minded to the actionlove site. Anyone on here using a traction device or VED or stretching excercise is only making matters much worse. All your doing is temporarily inflaming your entire penis. So for a while, your flacid penis is fat and puffy like a sausage in your crotch. But when it settles down, now your in worse shape than before. And your erect state is no bigger than your flacid state? curios isnt it? Dont worry George, I wont be on this site much longer- your too ignorant and closed minded to others ideas, yet for some strange reason, you have no definite cure? Freddie
Freddie, Personally I recommend getting vitamin D blood levels up to 50-70ng/ml. Vitamin D is a major regulator of both hormones and genes. Up to 60% of the population has tested deficient in random testing. This can cause just about every kind of disease. People were made to get large amounts of vitamin D from the sun. But because people are avoiding the sun and using sunscreen which blocks vitamin D, they are ending up deficient. There is research showing that vitamin D is effective in treating autoimmune disorders. Therefore I recommend it for Peyronies.
Secondly, I recommend Pentoxifylline. Pentoxifylline has been shown to be effective in treating Peyronie's in research done by Dr Tom Lue at University of California San Francisco Medical Center. Another recognized expert on Peyronie's, Dr Levine, also recommends Pentoxifylline. Pentoxifylline works by blocking the cytokine TGF-beta1 which is the substance that causes Peyronie's inflammation and plaque. Pentoxifylline is safe, easy to take, inexpensive and void of bad side effects. A months supply costs maybe $10-$30 a month depending on where you buy it.
Additionally, I recommend some of the same things you suggested that are probably helping you. Things like L-Arginine, fish oil, and hot towels are fine. ALC is also helpful. Also rational use of the VED. As for a cure. Don't be silly. I don't have a cure and neither do you. You have some things that have made it better. So do I. A lot of the stuff I have used in the past was useless. I have tried to actively sort that out and dump it.
As for being open minded, on this site we challenge each other to come up with valid evidence or back off. You are not being treated any differently than anyone else. If you can't handle that then you are in the wrong place. There are plenty of forums around that allow people to say all kinds of absurd things and go unchallenged. That kind of circus is not encouraged around here. Those of us that are here like it that way. It saves us the time of having to read over countless useless nothings in order to find something useful. So grow up and learn to engage in a meaningful dialog or find some place else to be the center attraction. - George
Georege Ill check those out thank you.
Freddie,
Hawk created this site. I think he is pretty aware of what posts go where. Also, he is aware of how to read scientific literature. And, like me, and George and Old Man and on and on and on all of us have Peyronie's disease - that is why we are here.
Dr. Lin has a hodge podge of information, some of which is wrong, on his site. Frankly, I cannot spend time there because I do not have the time to waste on crap. It is a cluttered and rambling site, and it is interesting that your posts have the same quality. They are intense and wordy and without paragraphic returns (ever) and are - for me - hard to read.
I think that whenever someone bursts upon the scene and talks more than he listens, then he is going to get slammed a bit. When what he says is non-scientific, and not within the boundaries of rational thought, then it will get even less credence.
To me, it seems like it is time for you to take the cotton out of your ears and put it in your mouth. Spend a bit of time here listening instead of pedantically lecturing and you might learn something.
Tim
Freddie,
I for one, have had success with traction. And clearly others here have had success with VED use.
I just came here to tell you what is working for me. If something is working for you, thats great. But you will never convince me that stretching scar tissue can heal it. Lets just say from experience, okay, my own personal scientific reporting, that what anyone will get when they stretch scar, is an entire inflamed, soft penis, that although it may seem to be in better shape at the time, it is really in a bad state. And it is usually numb to the usual peyronie's burning pains, because it is so inflamed. But when you take that traction device off, and let that penis sit for a week a two, oh boy! I dont want to take all your money, but if you want to put up some money with your highly intelligent scientific researched information to my ignorant hodgepodge, than lets get it on! You can not stretch scar back!! You need to soften and disolve it like any scar!! Believe it or not, Im trying to help! It only seems better with the traction and VED at the time because when you seriously inflame all the penile tissue, it swells up and becomes bigger in flacid state than in erection state. And thats not good. Its only a temporary fix, with an even more punishing long term result. Freddie
You are making most of us feel we are wasting our time trying to bring you up to speed on even the basics. Maybe you should read all of or "Child Board" and all of our "Resource Library". Most people that research know that traction can help. They know that small studies have demonstrated benefit (there is an obvious absence of studies on the other website you mention).
It is also clear that burn patients are absolutely dependent on daily stretching of scar tissue to prevent contraction and disfigurement. That is not opinion, it is not just evidence, it is established fact.
I want to be frank with you that many here including me do not value what we consider to be a garbage unload on the forum. In fact I have had PMs almost insisting that I ban you or otherwise deal with your disruption. That has almost never happened with with any of our thousands of members. You survive only because of our very tolerant policy. We have an uncensored forum but we expect some rational thought process and some courtesy on the forum.
As Tim and others have indicated, it is time to read and listen. Neither are you the teacher, nor are we your students. I think we understand your position and we unanimously reject most of your concepts as unsubstantiated, fanciful, nonsense. Please don't clutter the forum by restating or trying to convince us of what you have already stated. That would be spamming the forum. We do not care what you believe. If you have clinical studies, or sound medical theory backed by legitimate evidence feel free to share the studies and evidence. Those things we care about.
I will be on my way Hawk. I stick by my guns because I have healed and Im still healing. I havent seen one sucess story here sadly. You guys are looking way to deep into this. The penile tissues are the most complex tissues on a mans body because they can expand 3-4 times from flacid to erect- only with the assistance of the newly found and accepted hormone Prostaglandin E-1. You should look that up. BUT, it should not be expanded manually with pumps, strchers, so on. You see Dr. Lin as a quack. He is pure genious, and thinks outside the box. One day you will learn this. Unfortunately, it will probably be too late. You say you have scientific backing- if you really spent more time on his site, he has MANY links from scientific journals to back his statements. Please ask yourself tonight and sleep on it- Does it make more sense to use heat and light massaging with your fingers, and bring fresh blood to scar to heal it with your own body? Or is it better to keep stretching it and making it worse in the long run? Hopefully one day you will wake up to reality. Like I said, Im here to help. Although Im still not 100%, and who knows, maybe I never will be, I am not making up the fact that I have healed about 75% and am still healing. Why do I continue to battle with you and try to help-is it because Im a secret agent making commissions for Dr. Lin-NO knucklehead! Its because about 3 years ago I had cleaned up my apartment to plan my you know what. Need I need explain that one to anyone here! I said thats it, Im giving this one more shot, and started taking 75mg dhea and all the other boosters and pills, despite the warnings-what the hell did I have to lose? Bingo! Finally got a real erection, finally was balooning just like Lin said, and finally felt like it was going somewhere. I didnt believe in it either. But here I am trying hopelessly to convince you guys, because I know what a dark world it can be. You dont need to kick me off, Ill show myself to the door Freddie
hawk - just supposing freddie is right - what then?? - is he the messiah with the true message for a cure for Peyronies Disease - how can we be sure he is wrong?? - he does seem convincing..what if ved usage is bad - Im spending night after night using the ved and along comes this guy trashing all oldman says ( and I respect what oldman says) - what id stretching the scar is dangerous and will only lead to more trauma -
so you took a bunch of test boosters, a multi pack, some oils and DHEA and got better is that the summary of your improvement Freddie?
Iceman:
Thanks for your kind support. However, don't despair, VED therapy is and has been proven to be a viable "treatment" for Peyronies Disease symptoms. Freddie is not the only one that has trashed me and VED therapy on forums before. As he says, he will stick by his guns, and I wish him luck.
If his therapy regimen works, he should come forward and present the facts. Just because there are no published trial results of VED therapy, does not mean that the theory behind it won't work. It has been stated many times on this forum that caution should be exercised at all times when one is using VED therapy. Overextending the penile tissue without a doubt can and will cause more trauma. But, using a moderate and easy vacuum will never do damage to ones penis. (NOTE: I am looking forward to the published trails report from the Birmingham, AL study. Hopefully, it will be released soon.)
So, again, each individual has to decide on the method of therapy they wish to use. There is no definitive therapy that has as of now been discovered. We are all in the learning curve of this horrible mess. Maybe, some day there will be a method found to successfully treat the disorder.
I wish Freddie continued luck in his endeavor to find total relief from Peyronies Disease. But, I for one, know that Peyronies Disease can strike many times in one life.
Old Man
Iceman, If stretching tissues caused destructive trauma, the hospitals wouldn't be pulling people out of the bed immediately after surgeries and making them walk. They would instead be treating them with heat and massage. And neither would people with strains and sprains be sent to physical therapy. What Freddie says makes a whole lot of sense. But there is only one problem. Many things that make a whole lot of sense are simply not reality. Thats how people fall for simplistic solutions. And people like Freddie often see benefit where their is none. It is the difference between subjective reality and objective reality. It is the power of placebo. Actually, much of what Freddie is advocating is useful. It is just that the whole framework he presents it in is wrong and misleading. Read his posts. His own thoughts are an exercise in confusion. And much of what he asserts is simply contrary to reams of heavily documented scientific evidence. Remember, just because someone is convincing does not mean that they are communicating truth. People can communicate false concepts with unbelievable passion. Obviously Freddie is convinced, but that passion alone does not validate his theories. That is why testimonials are the least reliable path to truth. I don't use the VED or traction devices and never have and I have no connection to anyone who makes or markets them, but I can tell you that Freddie is simply wrong.
Iceman,
It is not that Freddie is posting nonsense (well, OK, he is), but this is more of an even a blind pig finds an acorn sometimes, you know?
The fact is that - as we have discussed here before - that testosterone lack, and testosterone replacement - may play a role in some fibrotic processes that lead to Peyronie's Disease. If that was the case for Freddie, then what he took would be of help, and thankfully for him, it did.
The issue I have is his one size fits all way of thinking. It's stupid, plain and simple. Not all of us need testosterone replacement. Not all of us should avoid the VED - in fact most of us will benefit from it. It is obvious that Freddie has not bothered to read about the VED protocol discussed here, and since he apparently does not know that we are talking about lower pressures intent on improving blood flow and gently stretching the tissues, he does not know that our way is different than pumping until your penis is grossly swollen with edema, and probably damaged.
It is an overwhelmingly obvious inattention to detail, and a one size fits all approach that I find so objectionable about his posts. I doubt he has read (or if he has read them is able to accurately recount the content) of a single major thread here. He therefore says dopey stuff like this to Hawk: "...with the assistance of the newly found and accepted hormone Prostaglandin E-1. You should look that up." Well, if Freddie had looked it up, he might have found (as did I) 6 posts by Hawk with that term (Prostaglandin) in it. It's just insulting.
He states to Hawk: "...if you even have Peyronie's".
This is rude and stupid - to come to a place and insult the creator of the board you are posting on. It goes to the heart of how I decide whether or not someone is worth interacting with. If they post like a dope, then they are probably a dope.
Dr. Lin sells stuff. Period. His cluttered site is geared towards selling his crap to men through the internet, out of a site (how mystical and "Eastern"!) in Boca Raton, Florida. He is an engineer who is exploiting an general interest in Eastern medicine (and an obsession in gentitalia) to hawk his products online.
Do they work? I don't even know what he has in them. More than one product marketed like this turned out to just be Viagra, leading to better erections, but claiming to be herbal. Who knows? He has never subjected his work or his products to any scrutiny.
It is a steaming, smelly pile of, um, ideas.
Tim
Quote from: Tim468 on February 24, 2009, 01:58:30 PMThe fact is that - as we have discussed here before - that testosterone lack, and testosterone replacement - may play a role in some fibrotic processes that lead to Peyronie's Disease. ... Not all of us need testosterone replacement.
And how do I know whether I am lacking in testosterone? NOT BY LOOKING AT MY SEMEN! ONLY a testosterone blood test will give may a reliable answer. Then we can argue about what is an appropriate level and potential strategies to make it better. But just looking at semen is ridiculous. - George
A drop off in the amount of semen suggests reduced prostatic function, and that is often secondary to decreased testicular production of testosterone. A finding of reduced production of semen, and smaller testes, should prompt an evaluation.
Tim
Freddie again :) Listen, I signed in because I didnt want to leave off on a bad note. Im sorry if I was mean or brash, and I sincerely apolagize to everyone here I have battled with on these topics. And if I offended you, I really am sorry. I also didnt mean to criticize your methods of healing. I am just as affected by this ridiculous problem as you all are. And Hawk, sorry I thought that you didnt even have it. I only wish everyone here the best of luck with their progress to cure themselves of this. I dont feel welcome because I really do 100% believe that Dr. Lins methods have helped me, and on this forum we would only clash more on theories. Mostly, maybe its what I followed Lins "not to do" that helped me the most. I believe the cure is an exact science. But I have checked out what you guys are doing and I am picking up the Vit D (thank you George) and Ill check out that other stuff. Peace out and God Bless! Freddie
Freddie,
Thanks. I appreciate your views and opinions. I try to keep an open mind and I'm pleased that Dr. Lin's methods work for you. I admit I even went to the site you suggested. I wasn't impressed. It was a bit of work to sift through all the multiple orgasm references. If I had found the site on my own, I would not have stayed long as the focus clearly is not on Peyronies and Peyronies treatment. The site made me feel that there must be something wrong with me and my partner if we are experencing multiple orgasms. Well, I'm quite happy with them one at a time.
I understand your views on VED and traction, but you are quick to make a point of bruising, pain, swelling, and inflammation it causes. I've used traction for months and didn't experience ANY swelling, bruising, or pain. So while I respect your views and that it works for you, it conflicts with my own personal (yet unscientific) research.
Go to broken penis, and peyronies on his site- Im not against the pump, Ive said that Dr.Lin does recomend to those only if you cant get a natural erection. And than he recomends Cyclic pumping 3min, let go 3min let go a few times a day to get fresh blood for healing. Its not what you do sometimes its HOW you do it. Freddie
Freddie, how old are you anyway? I thought I saw a reference in one of your posts that said 17? If that is so, there are gentlemen on this site that have been dealing with Peyronies for longer than you have been alive. Please, listen to them. They are wise.
thx guys - as always I will follow your advice - this forum is awesome and as I have said before : god help those poor bastards who had to suffer like I did, without the help and aid of the forum and the people on it...
Prior to this forum i was a slave to neprinol and pain - now my pain is gone and the curve has diminished somewhat -
Iceman,
I may have missed something? What treatments did you start since coming to the forum that helped you? We always like to hear positive stories, and any effective treatments, including side effects.
Comebackid
Mike, Im 32. I am paying attention to the posts. Trying to not be so stubborn w my opinions. For pain, I found that Cortizone-10 works really good, followed by a warm towel wrap (105 degrees) It softens scars nice. Any agree? Freddie Also, again I apologize for my rude and ignorant and stubborn behavior the last 2 days. And Hawk , sorry for calling you a knucklehead- you are wise, and I respect your site and Im checking out the methods you guys have Night, Freddie
i might give the warm towel wrap a try.
Quote from: Freddie on February 25, 2009, 01:25:53 AM
Hawk , sorry for calling you a knucklehead- you are wise, and I respect your site and Im checking out the methods you guys have Night, Freddie
:) Freddie, I accept that apology more because you need to make it than because I need to hear it. That comment literally bothered me least out of most of the things that you said. Our forum is here in part because we oppose censorship. We do not have to agree with you to welcome you to the forum.
I am sincere when I say that if you intend to stay I suggest you do a little background reading rather than starting your interactions here with assumptions. It does not have to be read all at once but the essentials to know what we share and what we know and do not know cannot be understood without reading:
The forum rules under
Read This First about censorship, using quotes, personal attacks, etc. Do not assume you know what the rules are: https://www.peyroniesforum.net/index.php/topic,6.0.html
The
Newly Diagnosed Highlights that are a condensed read only (no posting) version of the forum https://www.peyroniesforum.net/index.php/board,18.0.html
Finally, Our
Resource Library that has educational and resource material including some interesting studies, theories, diagrams, and treatment protocols. https://www.peyroniesforum.net/index.php/board,10.0.html
(all of these areas are for reading and not posting). Posting is done on this our main forum or in the
Off Topic area.
Post Removed for posting copy right material from another site in its entirety without approval of the owners of that material.
Hello,
From your guys experience is a bent penis while flaccid something to be concerned about? I believe it is the result of a fracture i sustained during intercourse about 10 years ago. I remember a distinct popping sound at the time but did not go for any treatment. I am now 40 years old. When erect there is no bend. The only other strange thing I get is twitching in the penis once and awhile but there is no pain. Is this something I should begin to treat or just leave it alone as long as I can get and erection and it is straight.
thanks
Quote from: Tim468 on February 24, 2009, 04:35:19 PM
A drop off in the amount of semen suggests reduced prostatic function, and that is often secondary to decreased testicular production of testosterone. A finding of reduced production of semen, and smaller testes, should prompt an evaluation.
Tim
as an additional point, it could also be a symptom of retrograde ejaculation caused by the bladder neck not sealing completely, for a number of reasons including neuropathy
Mr. Denberg,
Other than peeing onto the floor instead of into the toilet, I don't think a penis that bends when flaccid is a problem, if it is straight when erect.
That said, something happened, and it might be worth it to read up here about how to keep a penis healthy.
For me, I would avoid rough sex, not take propecia, not use a VED to extreme pressures or otherwise do anything that might damage my penis.
Tim
Hi Hawk-ok- what Id like to do is have a post somewhere maybe ubder "new or controversal or whatever theory" of how to cure this. I would explain which products I used from GNC so you and everyone doesnt think Im trying to sell for Dr. Lin, and most important, the concept of how to soften and dissolve scar. Yes, everything I learned was from Actionlove.com, and although it seems like a quacky site site to everyone here, the CONCEPT is excellent. The concept is really basic- 1. restore hormones and circulation to get a natural full erection(which would require detoxing liver to produce hormone exchanges) 2. Lightly massage erection to induce prostaglandin E-1 and E-3, and nitrous oxide for healing and 3. Apply a cream(which can be made from peppermint and a few other ingrediants) and massage penis a few times a day, and than wrap in damp towel (100-110 degrees) to help soften scar. Im not saying it could help everyone, and or heal everyone fully, but I really do believe from my experience that this is the way to go. Its been proven that lightly massaging scars promotes healing. First you have to Soften scar, which takes 3-12 months, and than the scar begins to Dissolve(sort of like a wound or cut on your arm-Sort of- Freddie
Quote from: Freddie on February 25, 2009, 07:45:31 PM
Its been proven that lightly massaging scars promotes healing. First you have to Soften scar, which takes 3-12 months, and than the scar begins to Dissolve(sort of like a wound or cut on your arm-Sort of- Freddie
Are you suggesting that dermal scars can be eliminated with this method. In other words I can get rid of my visible scars like this??? You say it has been
proven. Do you mean there is some evidence or "proven"? Who proved it. Quote the study or the accepted medical practice.
Freddie,
Why don't you take one point at a time, like establishing studies or proof that massaging an erection induces prostaglandin E-1 and E-3. I can tell you right now that no one here will accept that on a real MDs word much less on the word of an engineer's who is trying to sell something. Either you expect to show objective scientific evidence that these things actually cause the physiological response you say they do or you want us to have faith in your treatment.
Post about message under Alternative Treatments but again, unless you show objective evidence no one will by into your testimonial.
Hawk ok - you can soften and dissolve fibrosis- yes!- visible scars- you would have to send Lin a pic I guess or really explain your condition to him about the visible scars. I dont know how much you can dissolve depending on the severity- but yes Hawk- the key is heat- thats why he made that cream- but you could also use I believe peppermint extract with alcohol, and dhea cream and massage to bring the heat and wrap with warm towel. That gets it from the outside and the whole part about the erections and balooning gets it from the inside. You need to feed your penis hormones, dhea, nutrinents and amino acids with erections to soften and dissolve scars. You can either at least improve your condition and or heal up to 95%. For the tenth time- - if you are sceptical- than buy the products elsewhere, ok. But use his methods. Again Hawk, I know how tough this whole thing is, I have studied that site for three straight years. The balooning is for real, and is a big part in healing. But first you need to boost your test which may take a while to get an erection without erection drug or pump to begin healing. When I was at my worst, I felt completely hopeless, but US doctors offered no real solutions, except vit E, and never really explained everything. Thats what may have driven me the most batty- not knowing what the hell was going on. The reson I stuck to that site was because the more you explore it, the more answers you get- even if sometimes its not what you want to hear. As far as all the scientific proof and studies, he does have many links on his site. You need to get a natural erection because thats when you know you have the correct hormones to give the special penile tissues the elasticity. Thats the signal that you can produce your own Prostaglandins. Also, DO NOT get prostaglandin E1 injections for erections- injections into penis will make peyronies worse. Your body has to recooperate and detox and make its own. You should also check out cupping sets to give yourself deep tissue massage on muscles and joints. If you dont buy from Lin, go to Amazon.com- and type in I believe cupping. The stress hormone from the stress we go through and the inflamatory hormone from the scars travels throughout your body and gives you conjested muscles and stiffness in back, shoulders, neck. As far as those that had prostate surgery, I would write Lin, because I just dont know if they can produce the prostaglandins that you need, but he may offer a solution. Freddie
Freddie,
I'm hesitant to wade into this topic, but there are a couple of things you're repeatedly suggesting, that strike me as not good ideas:
Cortisone cream - in a couple of posts, you suggest applying Cortizone 10 and then putting a warm towel over that (in one post you say it's good for pain, and in another post you say it's good for dissolving scars). I have no medical expertise, but I just can't image that it's safe to do that long-term - first of all, the skin on the shaft is very thin so you're going to absorb more cortisone through it than through other parts of the body, and applying a warm towel over that is just going to amplify the absorption. As far as I know, you don't want to be taking cortisone into your body long-term, unless you absolutely have to - and probably especially dangerous to use this long-term on your penis. It would be worth your looking into the safety of this practice, before you suggest it to folks here.
DHEA: again I'm not an expert, but from what I've read, it's a hormone precursor, and not at all safe to take especially long-term. My understanding is that taking DHEA shuts down your body's own production of essential pre-hormones. Maybe OK to do under supervision of a doctor, but to just broadly recommend using it here, without medical supervision, this could be dangerous, and doesn't reflect well on your judgment.
Lastly, you emphasize that you can't heal Peyronie's without regular erections, and also you shouldn't ejaculate too often. Well, by those criteria, I should be healed of Peyronie's already, but I'm not: I'm 53, but in super physical condition, so I'm lucky enough to still get plenty of erections naturally - probably get them every night while sleeping. And due to schedule and geographic issues, my girlfriend and I only get together about twice a week, so I'm definitely not over-ejaculating. (and at 53, I don't feel the need to 'blow a load' several times a week, like I did when I was younger - am happy to mostly save it for my gf) So I'm definitely getting lots of circulation, hormones, prostaglandin, whatever, to my penis every day but guess what? - it's had no impact on my peyronie's. It hasn't gotten worse in 3 years, but neither has it gotten better. (I'm currently in the Xiaflex trial, but not seen any help from that so far.)
Don't want to get into any long debate here, but a number of the things you're tossing out here sound either dangerous or just besides the point.
G.
Hey G, Hows it going Ok Cortisone I did say you should take day off-apply one time a day 3 days- one day off to avoid thinning tissue- I use it only when irratated or pain occurs. Dhea levels drop after 25, and every study has reported that it is a supplement and your body doesnt get addicted. I use 25mg before balooning, and 25mg bedtime for nightime erection support.Now for you- you obviously dont need it for strong erection- good news for you! you are a healthy one! You should practice the balooning method on his site, and when penis is balooned, very gently massage scars, very gently for 5 minutes a day, and than wrap in warm damp towel about105 degrees ok. Check out his site. When you get erection, you massage base of penis near scotum and you should feel a test burst shoot up your penis- thats balooning practice 10 min a day with massage. If you dont feel test burst, take 50 mg dhea hour before balooning to do it. Than always take lowest dhea you can. ok. Freddie
To G and all- Remember, I am a student of Dr. Lin and his site from reading many of his links on his site, and writing him, and calling him. His site and advice has helped me a great deal. However, I dont want to be responsible for answering for him. Check out his site, write him if you want, ok. Now that Im thinking, maybe he told me 2 days on cortisone- 1 day off cycle- Im not perfect, and Im not a brain surgeon, so I too struggle understanding much of what he says. But if you read my interpretation of my experiences following his advice, its not that difficult the once you get the hang of it. Ive read many of the posts here, and it seems some guys get going on the right track, but because the right track does take long, they go to another track. I am no better. Just a little bit more lucky, only because I was too afraid to try the traction, ved, injections. And like I said, his site was at least answering my questions that were driving me insane, so I took a leep and went for it on a long shot. Sure enough, although Im still not perfect, and I hope to be one day or at least close, I can tell you with confidence that his advice is the right advice, ok. So like I said, if you are sceptical, than buy your products elsewhere but get to that site. It will still be a long road, but its the best chance you have. Through my 3 years battling this(even though I had it longer) I have visited this site, but was scared away by some of the ways- traction, ved, injections. I doubted Lin's site much, but like I said, it drew me in because I kept finding answers there that made sense, and his site didnt present any dangerous methods to healing, and warned against what not to do. So now I come to you all as a caring, helping man, not a scam or marketer for Lin, but as someone who isnt a selfish dog, in a dog eat dog world because I do care about others suffering and feel their pain, especially going through it myself. I feel confident enough with my progress to tell you guys about his site and advice. And I am very sorry, and pray for anyone who learns that they may not be able to heal, if their condition is that severe. Like I said, I myself even though Im doing good, may not get that 25%, but I really do feel and pray that I will. And I do pray for all suffering from all problems like this every night, - because I know now how tough it is. But I think in the end, its always better to know the truth, than not to know the truth. Even if the truth isnt what you want to hear, at least you could accept, and move on, and find other gratifying things to fill in the void. Just a few extra notes- when you learn the balooning and light massage- massage scar very lighly, and Dont massage more than 10 min a day-dont overmassage, because thats too much inflamatory hormone. Also after you get erection and baloon, stand up and squeeze butt cheeks together (please dont ask lol ;D) it helps control premature ejac, which is the most difficult task. To start go to Actionlove.com- go to premature ejac, peyronies, penile damage, penile pains, and youll see links everywhere for balooning. Visit other categories as well. and learn. Remember, everyones different- but in general, most men need to limit ejac to 2 times a week to preserve hormones so they are ready to baloon when they massage. Alright guys- if you want, check it out, and good luck. But please dont keep writing to me with all this debating and not check out the site. I really dont have that much free time to spend on here for a while(2 jobs starting next week) God Bless! Freddie
Hawk,
I am not for censoring anyone unless of course for ad hominen or profane attacks. But our boy Freddie is just a shill for for Lin and his voodoo. He spouts drivel. I bet he is actually Lin himself. If he wants to advertise for Lin, make him pay advertisement rates.
Enough!
Freddie, read this carefully because patience is wearing thin. You only have so many chances to respond to the questions and you have done nothing but avoid them.
I have heard about enough of Engineer Linn who you unethically refer to as Dr. Stop spamming the forum with his name. If you have a treatment mention it. If you have objective proof state it. If you continue to expect us to accept all this on faith then post it under religion in the Off Topic area of the forum and stop cluttering the main forum with faith based healing strategies.
Just as I expected, you have done everything to side-step my questions. I do not think that was an accident. Again, you said it is "a proven fact that scar tissue dissolves from message" yet when I asked for the clinical studies or widely accepted treatment protocols of that proof you posted 3 posts with pages of more claims without a shred of evidence much less proof. Answer the question! It is beginning to sound like you either don't even understand the definition of those words (proof, evidence) or you deliberately sneak to avoid backing up your statements with any objective evidence. Either of those make you totally unreliable and untrustworthy as a source of information.
I have about 20 of these questions but for now we will try just two!
I repeat, where do you find the commonly accepted "proof" that massage dissolves scar tissue even on the arm? Who proved it. Quote the study or the accepted medical practice.
Where is the objective proof or even some possible objective evidence that massaging an erection "induces prostaglandin E-1 and E-3." Either you expect to show objective scientific evidence that these things actually cause the physiological response you say they do or you want us to accept your treatments based on faith. That is unacceptable.
Don't just clutter the forum by repeating the same type of thing you have already said ten times.
It is time to put up or shut-up as the saying goes.
Hi everyone,
I was considering taking ginkgo biloba since I have suffered from some ED problems since I performed those exercises 3 years ago. I am currently taking pentox on the recommendation of a urologist. (I'm 24). I have very rare morning erections, and when I do they are of very low quality...much lower quality and number than prior to the exercises.
1. Would you recommend this ginkgo for ED and numbness problems, or is the pentox with occasional cialis when I have a problem obtaining an erection sufficient?
2. Are there dangers in combining ginkgo and pentox?
3. If so, how much ginkgo would you recommend for daily use?
4. Any other advice greatly appreciated. I'm learning...
Jon, Here are some thoughts:
1) I used Ginkgo for some time and found it not very useful. I still have a full unopened bottle. I tried different brands and different formulations. I found no benefit for Peyronie's and as far as ED goes, I was also using Horny Goat Weed, an analog of Cialis and Viagra and I can tell you that Ginkgo DOES NOT do what Cialis does.
2) Both Pentoxifylline and Ginkgo are blood thinners. Therefore there are POTENTIAL risks to using both Pentox and Ginkgo concurrently. That does not mean you can't do it. You just have to be aware of the risk of combining blood thinners. Vitamin E is also a blood thinner so it is easy for guys with Peyronie's to get to many blood thinners going in concert and risk bleeding issues.
3) How much Ginkgo you can use safely depends on how many other blood thinners you are using and also your personal sensitivity to them. I ALWAYS recommend starting at the lowest does and NEVER exceeding the label recommendations unless you REALLY know what you are doing and understand the risks.
4) I certainly think their are better options for dealing with ED. Cialis of course would be numero uno. Arginine would also be helpful. And long term, of course, I believe that getting Vitamin D (http://www.vitamindcouncil.org) blood levels in order would be beneficial. Other long term strategies are diet and exercise focused on losing any excess waist circumference. All of these long term strategies may seem off topic considering how this ED issue came about in your case, but actually they promote healthy healing which needs to be your long term focus. Short term, of course, nothing beats the old PAV strategy. PAV (PENTOX, ARGININE, VIAGRA) was Dr Lue's original strategy against Peyronie's and I believe the AV still have value along with the P. Incidentally, PAV not only is useful in terms of stopping Peyronie's, there is also a Case Study (http://repositories.cdlib.org/postprints/1416/) demonstrating its usefulness in dealing with Corporal Fibrosis which I find VERY interesting. - George
Alright, I did my best to share with you what worked for me. Im sorry you are not interested . This time I will go for good. I wish everyone one the best. And no, I am not Dr. Lin, or a shill for Dr. Lin. God Bless!Freddie
I would have been happy with indentation and paragraph returns...
Editorially, Tim
Apparently Freddie preferred leaving to answering a direct question. Seemed like a simple request but clearly not simple enough. He is obviously more at home on a forum that accepts any claim without, evidence, clinical studies, or rational theory.
This is the second time he has deleted his id. This means he orphaned posts under both registrations and they are now listed as "guest posts". His abuse and cluttering of this forum have been tolerated but not appreciated.
I am interested in member opinion on deleting these posts. Please respond by voting in this poll. https://www.peyroniesforum.net/index.php/topic,792.msg18534.html#msg18534
Poll is at the top of the page on this link. Voting is anonymous.
THank you George, that was very helpful. Now to straighten my mind and thoughts out...
Quote from: mikesb on February 24, 2009, 07:47:59 PM
Freddie, how old are you anyway? I thought I saw a reference in one of your posts that said 17? If that is so, there are gentlemen on this site that have been dealing with Peyronies for longer than you have been alive. Please, listen to them. They are wise.
thats me dude. im sorry i agree that site is a sham but about you guys argueing about what cause peyronies. all i have to say is that i caused mine by masterbation. im not saying everyone got it like that or anything im just stating a simple fact between me and my penis. so are you guys done argueing? can we talk about vitamins damnit? ok so what can i take other then what im taking to be beneficial? fish oil? im taking vitamin d 1000 vitamin e and mk7. can someone please tell me what else i should be taking that could be beneficial? im in hell here guys help would be appreciated. and yes george i will keep taking vitamin d.
Im actually very new at this and im also rather shy about it. However, I'm not exactly sure if I even have this disease, but i believe I do. I plan to visit my student health center in my college to see what they think about it tomorrow, but as for now I have no idea what to really do. I'm actually 18 years old and I know that most people my age do not suffer from this. I know that everyone says that I will need to see a urologist but I'm actually sorta scared. However to explain my situation first:
I'm not exactly sure how I received this bump on the right side of my penis, but its there. When I push on it its squishy feeling. The result, it bends to the left. I didn't know hard it was to have sex until I actually tried it. It wasn't painful, but it was simply difficult to...well go all the way in. I honestly didnt even really notice too much about it until my girlfriend pointed it out. In addition I also found it pretty hard to maintain an erection (ED?) when I was standing, however when i was sitting down or lying down I would be able to maintain it. It seemed very bizarre to me.
So...first things first, I will actually try to get a hold of a doctor, however I also want to know what everyone thinks will work. Creams, medication, etc...? I've actually heard that vitamin E works, however I guess eating a lot of spinach doesnt really help the causes x_x. Thank you everyone for the advice in advance!
Exile999,
What you described so far doesn't seem enough to me to diagnose Peyronie's Disease. The bump being squishy implies to me you have a pooling of fluid, maybe a bruise. You stated this causes curvature, do you mean while flacid, or while erect? And how much of a curvature would you estimate?
You are on the right track by seeing a doctor. I remember at your age myself being nervous about dropping my pants for any doctor. I still don't like doing for my annual physical. But you do need to get a professional opinion on your symptoms. It could quite possibly be something minor that will absolve and go away on its own. I would be hesitant to give you any advice until we know for sure what we are dealing with.
You will for sure want to make an appointment with a urologist and not waste time with the campus med center. I'm not dissing the campus center, but unless you are at a medical university I don't think any of them will have a proper urologist on staff.
hmm...i visited the med center doctor today and all she could say was that it wasn't anything abnormal just difference in structure.
As to answer your question willis, this squishyness actually causes a curvature both while being flaccid as well as erect, even more curved when erect. Now is the bump supposed to be hard (if i may ask under this topic?)
"Is the bump supposed to be hard?"
I don't know how to answer that. It could be a natural vein or a golf ball sized tumor. There is much about your description that is just unclear. When did you first develop the curve? It seems strange you would fail to notice something on your own penis that your girlfriend would notice. Most people notice minute details about their body that others never notice. Likely your girl friend knows which of her breasts is the largest. You probably have a 50/50 guess.
Can you tell me what the credentials were of this person at the student center that examined you? Was it a General Practitioner (MD), Urologist (MD), or possibly a nurse or a physicians assistant?
I could use a bit of my off-beat humor here but I don't want you to think I do not take this seriously because I do.
IT is not hard, it is impossible, to figure out what is going on with your penis. Partly, as a brand new member of the site, much of the language we use here is going to be new to you, but even the idea that you have Peyronie's is new, and so there is much you have to learn. You could not walk into a class in archeology and ace the final without first learning the stuff taught there.
I suggest that you read the "Child Boards" here to catch up on the various things we talk about.
A couple of questions:
Has it always been like this?
Is it severe?
Does it hurt?
Is there a change in texture, shape or color of the skin over the affected area?
I can think of lots of other questions.
I am wondering if the "bump" on the right side is normal penis tissue and the abnormal tissue is on the left, since you curve left. Sometimes if the tunica is taut, fibrotic or dense, then it will feel woody or abnormal, but what it will not feel is "fleshy" or squishy. On the other hand, the normal penile erectile tissue on the other side may appear to pooch out and feel like a lump, when contrasted to the less compliant left side. Just a theory, but as others have suggested, go to a urologist, not a campus clinic doc in the box.
Tim
I have another suggestion for Exile. That is this. If you seek medical attention and what the doctor or nurse or whatever is telling you doesn't make sense or explain things for you, go back and seek a further explanation. If that doesn't clear things up, seek a second opinion. Don't just get stuck and don't just go and try to get an answer on the Internet. The Internet and forums like this will be totally USELESS to you UNLESS you have a diagnosis. That is what doctor's are for. Most of us ARE NOT doctors and even of those who are, most are not urologists. And even if I were a Peyronie's specialist of top caliber, I COULD NOT tell you anything useful without examining you and very likely doing some in office tests. So, even if the doc you have already seen is a urologist, if you haven't gotten a satisfactory answer, which you obviously haven't, then either GET ONE or GO TO ANOTHER DOCTOR. Can we make it anymore simple than that? I think all of us are dancing around the same bush here and it is time for you to pay attention and do yourself a favor by doing the right thing. OK? - George
Not sure if this post is in the right place so go ahead and move it if need be.
This is a few days late, but I strongly vote to leave Freddie's posts up. As a newbie to the disease, I was looking everywhere, including on that ridiculous "Mr." Lin site (I thought it is illegal to use the term doctor if the use misleads people into thinking it is a medical degree. THis is the case with the JD, so maybe the PhD. doesn't hold here).
Well, the truth is I was skeptical, but it wasn't until I came here where I read Freddie's posts and your intelligent responses before I realized that his site is probably little more than hocus pocus. If Freddie's comments and your responses were not up, in my desperate state I might have followed his advice.
So, for newbie's like me, I think leaving the posts up is a very good thing.
Jonny,
Your reply should go under the general topic "Member Polls," under the topic "Deleting Orphaned Posts." I'm sure hawk will move your reply, but you need to go there to vote for yourself.
I voted to leave up the posts for exactly why you are saying. As a newbie you can come and see the nonsense and see how we all replied and how much good thought is here in our forum. You can see the nonsense rubbish of freddy for what it is...
Comebackid
This is slightly off topic, but I know that some here have concerns as to how vitamin D might affect prostate cancer risk. Fortunately, this is an issue that is being pursued by researchers. Here are several recent abstracts:
Quote1: Br J Cancer. 2009 Feb 10;100(3):450-4. Epub 2009 Jan 20.
Association between serum 25(OH)D and death from prostate cancer.
Tretli S, Hernes E, Berg JP, Hestvik UE, Robsahm TE.
The Cancer Registry of Norway, Institute of Population-based Cancer Research, Oslo, Norway.
Based on observations that for certain cancers, mortality varies according to sun exposure, vitamin D has been proposed to influence on disease progression. This study aims to investigate whether serum levels of 25(OH)D are associated with prognosis in patients with prostate cancer. In total, 160 patients with a serum sample in the JANUS serum bank were included. For 123 patients a pre-treatment serum sample was taken, whereas 37 of the patients had received hormone therapy prior to the blood collection. The serum level of 25(OH)D was classified as low (<50 nmol l(-1)), medium (50-80 nmol l(-1)) or high (>80 nmol l(-1)). A Cox proportional hazard regression model was used to assess the association between serum 25(OH)D and cancer mortality. During follow-up, 61 deaths occurred, of whom 52 died of prostate cancer. The median time of follow-up was 44.0 months (range, 1.2-154.6). Serum 25(OH)D at medium or high levels were significantly related to better prognosis (RR 0.33; 95% CI 0.14-0.77, RR 0.16; 95% CI 0.05-0.43) compared with the low level. Analysis restricted to patients receiving hormone therapy gave a stronger association. The serum level of 25(OH)D may be involved in disease progression and is a potential marker of prognosis in patients with prostate cancer.
PMID: 19156140 [PubMed - indexed for MEDLINE]
Quote1: Ann Epidemiol. 2009 Feb;19(2):96-102. Epub 2008 Jul 10.
Vitamin D and intervention trials in prostate cancer: from theory to therapy.
Schwartz GG.
Departments of Cancer Biology and Epidemiology and Prevention, Wake Forest University School of Medicine, Winston-Salem, NC, USA. gschwart@wfubmc.edu
Studies of vitamin D and prostate cancer have advanced rapidly from the hypothesis that vitamin D deficiency increases the risk of prostate cancer to intervention trials of vitamin D administration in clinical cancer. The hormonal form of vitamin D, 1,25(OH)(2)D, exerts prodifferentiating, antiproliferative, anti-invasive, and antimetastatic effects on prostate cells. Moreover, normal prostate cells synthesize 1,25(OH)(2)D from serum levels of the prohormone, 25-hydroxyvitamin D. The autocrine synthesis of 1,25(OH)(2)D by prostatic cells provides a biochemical mechanism whereby vitamin D may prevent prostate cancer. Many prostate cancer cells have lost the ability to synthesize 1,25(OH)(2)D but still possess 1,25(OH)(2)D receptors. This suggests that whereas vitamin D (e.g., cholecalciferol) might prevent prostate cancer, existing prostate tumors likely would require treatment with 1,25(OH)(2)D and/or its analogs. The major obstacle to the use of 1,25(OH)(2)D in patients therapeutically is the risk of hypercalcemia. Several maneuvers to reduce this risk, including pulse dosing and the use of less calcemic 1,25(OH)(2)D analogs, have been explored in Phase I-III clinical trials. Once merely a promise, vitamin D-based therapies for prostate cancer may soon be medical practice.
PMID: 18619854 [PubMed - in process]
Quote1: Ann Epidemiol. 2009 Feb;19(2):84-8. Epub 2008 Mar 4.
Vitamin D and cancer incidence in the Harvard cohorts.
Giovannucci E.
Channing Laboratory, Department of Medicine, Harvard Medical School and Brigham and Women's Hospital, Boston, MA, USA.
Since the hypothesis that vitamin D reduces the risk of some cancers was initiated in 1980, this hypothesis has been studied in the Harvard cohort studies, including the Nurses' Health Study (NHS), the Health Professionals Follow-Up Study (HPFS), and the Physicians' Health Study (PHS). Three approaches have been used, the study of circulating 25(OH)vitamin D (25(OH)D) level, of dietary and supplementary intake, and of predicted 25(OH)D. These cohorts strongly support an inverse association with colorectal cancer, because this association has been viewed in both the NHS and HPFS cohorts, for cancers and adenomas, and for plasma, diet, and predicted 25(OH)D analyses. In the NHS, about a 30% reduction in risk was observed for breast cancer comparing the highest with lowest quintiles of 25(OH)D levels. Vitamin D intake also was associated with a lower risk of pancreatic cancer in both men and women, but studies of plasma or predicted 25(OH)D level or dietary intake have generally not been supportive of a major role of vitamin D status in middle-age or elderly men on prostate cancer risk. Results from the HPFS also suggest that the poor vitamin D status generally in African-Americans contributes to their higher incidence and mortality from various malignancies.
PMID: 18291673 [PubMed - in process]
Quote1: Clin Cancer Res. 2009 Jan 1;15(1):190-200.
RRR-alpha-vitamin E succinate potentiates the antitumor effect of calcitriol in prostate cancer without overt side effects.
Yin Y, Ni J, Chen M, Guo Y, Yeh S.
Department of Urology and Pathology, University of Rochester Medical Center, Rochester, New York, USA.
PURPOSE: To determine the antitumor efficacy of using calcitriol combined with RRR-alpha-vitamin E succinate (VES) on prostate cancer. EXPERIMENTAL DESIGN: The effects of VES or VES in combination with calcitriol on the calcitriol target genes were evaluated by Western blot and real-time PCR. The antiproliferation effect of the combination in prostate cancer cells was evaluated by the combination index method. The role of the vitamin D(3) receptor (VDR) in the enhanced antitumor effects of the combination was confirmed by small interfering RNA knockdown strategy. Xenograft-bearing mice were used to reaffirm the antitumor efficacy of this combination. Pathohistology analyses and expressions of VDR and its target genes were analyzed in untreated and treated tumors. RESULTS: VES selectively increased VDR protein in different prostate cancer cells. Low doses of calcitriol combined with VES were significantly superior to the additive effect of individual treatments against prostate cancer cell proliferation. The expression of VDR target genes involved in antiproliferation were further sensitized in the presence of VES. Knockdown of VDR expression abolished the combination benefits in LNCaP and PC3 cells. Consistently, in prostate cancer xenograft models, VES enhanced the therapeutic efficacy of a tolerated dose of calcitriol yet without overt evidence of systemic toxicity and hypercalcemia. This notable in vivo effect was also accompanied by up-regulation of VDR target genes. CONCLUSIONS: Low-dose calcitriol combined with vitamin E analogue could be a solution to the calcemic side effect. The demonstration of superior antitumor activity of low-dose calcitriol plus VES provides the preclinical basis for developing a useful therapeutic strategy for prostate cancer.
PMID: 19118046 [PubMed - in process]
It is often useful to look at multiple studies in order to get a better picture of what is actually going on.
From the first study on the list, we learn that lower serum vitamin D levels are associated with more aggressive prostate cancers.
From the second study we learn that prostate cancer cells can lose the ability to process vitamin D which could explain why some studies are showing that vitamin D is NOT protective against prostate cancer and in fact may increase prostate cancer risk. The solution of course would be to deliver higher doses of vitamin D which would deliver higher doses of D hormone externally to the cancer cells and kill them. The problem with that of course is the risk of hypercalcemia.
The third study reflects the above conundrum fretting about the percieved ineffectiveness of vitamin D against prostate cancer as opposed to its percieved efficacy against other cancers.
The fourth study provides insight into a potential solution to the above problem by offering a synergistic candidate that would possibly make the use of vitamin D against prostate cancer feasible. The one problem with this candidate, a form of vitamin E, is that in order for it to be effective, it cannot be taken orally, but researchers are working on that issue.
These studies are all recent and are representative of current research on the relationship between vitamin D and prostate cancer. - George
If one takes a multivitamin that has 400IU of vitamin D in it, how much of that vitamin D can they expect to actually absorb from the vitamin, half of it? Anyone know?
George, You explained to me that taking D3 vitamin D is better than a multi-vitamin, why do you think this?
Comebackid
I just went out and bought 500 mg l arginine pills. Can someone recommend a dosage to begin with? The bottle says 1 pill per day with food, but it seems that others on here are not following this from previous posts.
I'm currently taking 3 pentox per day and a daily men's multivitamin.
Levine told me to take 1000mg twice a day. So you'd have to take 2 500mg pills in the morning, and 2 in the evening.
Quote from: ComeBacKid on March 03, 2009, 09:24:46 PM
George, You explained to me that taking D3 vitamin D is better than a multi-vitamin, why do you think this?
The problem is that 1) The amount of Vitamin D contained in a multi is typically not enough and 2) only the oil based softgel form is uniformly and reliably absorbed by the body.
i think doctors are pushing the RDA to be upgraded to 2,000IU/day
The whole problem with Vitamin D is that it really is a hormone and not a nutrient. Nutrients are usually supplied sufficiently by foods and, with the exception of Vitamin A, usually have few side effects if you get too much.
Vitamin D, being a hormone (actually a pro-hormone) is much more of a problem if a person is deficient. It also has a couple of much more dangerous potential side effects if things go wrong. This is why it really needs to be managed by a physician. There is an emerging Vitamin D level in the blood that is needed to promote health. This is the range of 50-70ng/ml. This is the level that is commonly found among people who literally live in the sun. This is the level one should strive for, but achieving and maintaining that level requires blood tests until you know how much your body requires.
There are also things that can go wrong.
1) If you have an underlying undiagnosed para-thyroid problem, you can end up with too much calcium in the blood as a result of taking vitamin D. Approximately 1% to 3% of the population have this problem. This is a very serious problem that can result in death. In that case, the parathyroid problem needs to be taken care of first, before raising vitamin D levels.
2) If you have had prostate cancer in the past, taking vitamin D can make that cancer more aggressive if any of it remains. This is not well understood, but there is a study out there that indicates it to be a potential risk. It is likely due to the fact that normalizing vitamin D levels can also raise testosterone levels and thus fuel prostate cancer. If you have NOT had prostate cancer, vitamin D is actually preventative against it. In any case every guy should be getting their prostate fingered annually AND be watching for any changes in their PSA.
3) If you are taking the vitamin D capsules, it is possible to reach a toxic level in your body. According to the latest from the NIH that seems to be somewhere over 200ng/ml. The exact level is not real clear. Another reason why you need to monitor blood levels every few months when starting and thereafter annually.
4) If using a sunlamp you can overdue and risk skin cancer. More than twenty minutes a day is probably too much. Also, using a sunlamp while not maintaining your vitamin D levels can raise the risk of skin cancer. Sunlight causes skin cancer. Vitamin D protects against skin cancer. The reason for high rates of skin cancer is too much sun (or sunlamp) exposure and too little vitamin D in the blood. This needs to be balanced.
I have probably not covered all of the points. Once again, the information on vitamindcouncil.org and grassrootshealth.org needs to be read and reviewed with your personal physician. I am not a doctor. I am just trying to provide information. When it comes to vitamin D, it is essential to read the professional advice from doctors on the above websites AND discuss it with your own doctor. - George
Hello, I've been a lurker here for a while- but that's besides the point for the time being. I don't have much time, but I would like to respond to what Freddie has been saying about Dr. Lin here.
A while back I had injured my penis, and unfortunately the first thing I came across was Dr. Lin's site. I wrote him and took his advice; this consisted of taking his pills throughout the day, and cost me around 150 dollars everytime I ordered from his site. I would write him back and ask him why it hasn't been working yet, and he tells me to take more of his pills; then my hair starts falling out, and to this day, I believe his supplements jumpstarted my hair loss. He's selling stuff that tweaks with our hormones, without telling us all of this. He just wants a quick buck. I had better results from Arginine and Viagra, and all of that costs me a fraction of what he was selling his destructive stuff for.
While many men have had great success from ballooning- Dr. Lin is not the first one to come up with this theory. Rather, I believe he is taking fragments of information from actual Chinese Doctors. He's just a pseudo-urologist. Sorry for taking such an offensive end in my post, but I really am pressed for time right now, and would prefer people not to fall victim to his overpriced 'potions'.
Daysdrag,
Assuming your post is completely honest (which I have no reason to believe its not) thanks for your reply, we need to hear from people like you who have been sold dangerour or ineffective stuff. This is why I advocate the usage of pentox which is cheap and somewhat proven to work, and an incredibly safe drug! I don't know own stock in the company that makes it nor do I work for them!
chris
1) VITAMIN D AND FIBROSIS, COLLAGEN, TGF-BETA1, ETC
Quote from: PubMed1:J Endocrinol (http://joe.endocrinology-journals.org/cgi/content/abstract/JOE-08-0241v1). 2009 Feb;200(2):207-21. Epub 2008 Nov 26.
Vitamin D reduces the expression of collagen and key profibrotic factors by inducing an antifibrotic phenotype in mesenchymal multipotent cells.
Artaza JN, Norris KC.
Department of Internal Medicine, Charles Drew University of Medicine & Science, Los Angeles, California 90059, USA. jorgeartaza@cdrewu.edu
Hypovitaminosis D is an important public health problem. Serum 25-hydroxyvitamin D (25-OHD) is now recognized as an independent predictor for cardiovascular and related diseases (CVD) as well as other chronic medical conditions. However, the biologic pathways through which these effects are mediated remain poorly understood. We hypothesized that exposing mesenchymal multipotent cells (MMCs) to the active form of vitamin D would increase the expression of selected antifibrotic factors that in turn would ameliorate the progression of chronic diseases. MMCs were primed with 5'-azacytidine to induce a fibrotic phenotype and then treated with active vitamin D (1,25D) or ethanol <0.1% as vehicle in a time course manner (30 min, 1, 5, and 24 h, and for 4 and 7 days). The addition of 1,25D to MMCs promotes: a) increased expression and nuclear translocation of the vitamin D receptor; b) decreased expression of TGFB1 and plasminogen activator inhibitor (SERPINE1), two well-known profibrotic factors; c) decreased expression of collagen I, III and other collagens isoforms; and d) increased expression of several antifibrotic factors such as BMP7 a TGFB1 antagonist, MMP8 a collagen breakdown inducer and follistatin, an inhibitor of the profibrotic factor myostatin. In conclusion, the addition of 1,25D to differentiated MMCs displays a decreased profibrotic signaling pathway and gene expression, leading to decrease in collagen deposition. This study highlights key mechanistic pathways through which vitamin D decreases fibrosis, and provides a rationale for studies to test vitamin D supplementation as a preventive and/or early treatment strategy for CVD and related fibrotic disorders.
Quote from: PubMed1: Nephrol Dial Transplant. (http://ndt.oxfordjournals.org/cgi/content/abstract/24/3/778?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=(Calcitriol+AND+ameliorates+AND+capillary+AND+deficit+AND+and+AND+fibrosis+AND+of+AND+the+AND+heart+AND+in+AND+subtotally+AND+nephrectomized+AND+rats)&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT) 2009 Mar;24(3):778-87. Epub 2008 Oct 1.
Calcitriol ameliorates capillary deficit and fibrosis of the heart in subtotally nephrectomized rats.
Koleganova N, Piecha G, Ritz E, Gross ML.
Department of Pathology, Insitute of Pathology, University of Heidelberg, Heidelberg, Germany. nad_ko@gmx.de
BACKGROUND: Remodelling of the heart, characterized by hypertrophy, fibrosis and capillary/myocyte mismatch, is observed in patients with chronic renal failure. Low vitamin D levels have been associated with increased cardiovascular risk. In the present experimental study, we studied the effects of non-hypercalcaemic doses of calcitriol on microvascular disease and interstitial fibrosis of the heart. METHODS: Three-month-old male Sprague-Dawley rats were randomized to subtotal nephrectomy (SNX) or sham operation and received calcitriol (6 ng/kg) or vehicle starting immediately thereafter. Blood pressure was measured by tail pletysmography. Albuminuria was measured by rat-specific ELISA. Capillary length density, volume density of interstitial tissue, immunohistochemistry and western blots (vitamin D receptor, collagen I, III, TGF-beta(1), MAP kinases and nitrotyrosine) were assessed after 12 weeks of treatment. RESULTS: After SNX blood pressure, albuminuria and heart weight were elevated, capillary length density reduced and interstitial fibrosis increased. Treatment with calcitriol reduced albuminuria and prevented reduction of capillary density and expansion of interstitium without affecting significant blood pressure and heart weight after perfusion fixation. Calcitriol left high VEGF unchanged, but upregulated VEGF receptor 2 (presumably reversing VEGF resistance). Calcitriol reduced expression of profibrotic TGF-beta(1) and the accumulation of collagens I and III. CONCLUSIONS: Non-hypercalcaemic doses of calcitriol ameliorated, directly or indirectly, cardiac remodelling in sub- totally nephrectomized rats.
2) VITAMIN D AND INFECTIONS
Quote from: PubMed1: Pediatr Res. (http://www.pedresearch.org/pt/re/pedresearch/error.htm;jsessionid=JyhdS8nytvp2mkjhpwTTxrD2Kn2JzylTpddHjjncyG43QnGQPVTG!751744069!181195628!8091!-1) 2009 Jan 28. [Epub ahead of print]
The Vitamin D Connection to Pediatric Infections and Immune Function.
Walker VP, Modlin RL.
Department of Pediatrics [V.P.W.], Department of Microbiology [R.L.M.], Department of Medicine [R.L.M.], David Geffen School of Medicine at UCLA Los Angeles, CA 90095.
Over the past twenty years, a resurgence in vitamin D deficiency and nutritional rickets has been reported throughout the world, including the United States. Inadequate serum vitamin D concentrations have also been associated with complications from other health problems, including tuberculosis, cancer (prostate, breast and colon), multiple sclerosis and diabetes. These findings support the concept of vitamin D possessing important pleiotropic actions outside of calcium homeostasis and bone metabolism. In children, an association between nutritional rickets with respiratory compromise has long been recognized. Recent epidemiological studies clearly demonstrate the link between vitamin D deficiency and the increased incidence of respiratory infections. Further research has also elucidated the contribution of vitamin D in the host defense response to infection. However, the mechanism(s) by which vitamin D levels contribute to pediatric infections and immune function has yet to be determined. This knowledge is particularly relevant and timely, because infants and children appear more susceptible to viral rather than bacterial infections in the face of vitamin D deficiency. The connection between vitamin D, infections and immune function in the pediatric population indicates a possible role for vitamin D supplementation in potential interventions and adjuvant therapies.
3) VITAMIN D AND CANCER
Quote from: Renal and Urology NewsElevated serum levels of vitamin D may be associated with a reduced risk of death from prostate cancer, researchers reported in the British Journal of Cancer (http://www.renalandurologynews.com/Prostate-Cancer-Death-Risk-Linked-to-Vitamin-D/article/128382/) (2009;100;450-454).
The researchers, led by Trude Eid Robsahm, PhD, of The Cancer Registry of Norway, Institute of Population-based Cancer Research, Oslo, concluded that serum calcidiol levels may be involved in disease progression, and this patient group may benefit from increasing the serum level of vitamin D if it is below 50 nmol/L.
Lots to chew on. The case for vitamin D in treatment of fibrosis (such as with Peyronie's) and pathogens is pretty clear. The case for cancer as well except for prostate cancer. In the case of prostate cancer there is ongoing research and no clear answers yet. - George
Question for everyone on pentox, so far the biggest side effects I've noticed are dry mouth, more than usual sweating even when I'm sitting here typing, and an increase in irritability and aggression. It seem like small things just make me angry and aggressive, has anyone else noticed this? I feel like my blood pressure might be up or that I'm stressed out. I don't know if this even a side effect of pentox or not? It should be noted that some days I can only get two doses in, but the days I get three in, especially after the third pill for the day I notice an irritability in my mood and aggression. I also noticed especially after taking three pills per a day, I feel like I need to move my legs around and they feel tingly. Another effect I've noticed is that my erections are much more improved and "fuller" but its harder to ejaculate, similar to the effect I got when I was on anti depressants four years ago, except that was even worse, it was almost impossible to reach orgasm then.
Comebackid
comebackkid - ive been on pentox now for 12 months taking 3 per day and ive found no side effects - how long have you been on it??
comeback/iceman
Hi,
i've been on pentox for 2 weeks now, minimum dosage 2x 400mg to 3x times,
but i will stay with twice a day, bacause of the stomach problems i get even with food.
I also noticed the dry mouth effect. The psychological effects i would pay to the pentox, as far as it goes with me.
I plan to stay for 6-8weeks till my supply wents.
Bye Kenny
kenny,
By most reports, "weeks" is not the unit that we use to define how long to take Pentox. Rather, it is "months".
Tim
Iceman,
About a week and a half is how long I have been on pentox. To avoid the stomach getting upset taking the pentox after a meal, and you won't have that problem. Bottom line is the side effects arent' that severe and wouldn't cause me to stop taking the pentox. Last time I stayed on it 9 months and it did work. I plan to phase in the VED soon, but want to give the pentox some time to work and kick in.
Kenny,
You need to be on the pentox at least 6 months, this time I may stay on it a year or even longer, hopefully long enough to cover the time until xiaflex is available, that could be two years...
Comebackid
Quote from: George999 on March 06, 2009, 11:09:05 AM
There are also things that can go wrong.
2) If you have had prostate cancer in the past, taking vitamin D can make that cancer more aggressive if any of it remains. This is not well understood, but there is a study out there that indicates it to be a potential risk. It is likely due to the fact that normalizing vitamin D levels can also raise testosterone levels and thus fuel prostate cancer. If you have NOT had prostate cancer, vitamin D is actually preventative against it. In any case every guy should be getting their prostate fingered annually AND be watching for any changes in their PSA.
Here in lies my entire concern which I have previously voiced. Many men that think they have not had prostate cancer, do in fact have it. I do not speak as an objective bystander. I have battled both Peyronies Disease and prostate cancer. To those that think Peyronies Disease is the worst that can happen, I strongly disagree. There are many fallacies connected with prostate cancer. It is a subject I know far more about than I do about Peyronies Disease. The incidence of undetected prostate cancer in men in their 50's is staggering. The toll for awakening or developing an aggressive line of this cancer is devastating. The cost is in hundreds of thousands of dollars in treatment for an individual, not to mention the obvious cost of life. The cost of even a successful battle can be ED and incontinence. The late stage battle requires total androgen deprivation with far more than sexual side-effects. It can devastate everything from the skeletal structure to internal organs and mental functioning.
Since most men on this forum are in the age group likely to harbor undetected prostate cancer, please exercise caution with vitamin D and testosterone replacement. Few general practitioners are savvy about recognizing the importance of PSA velocity which is far more important than the actual PSA level. Additionally, the most aggressive prostate cancers often produce little or no PSA. Digital exams while important, often fail to reveal cancer even to a very skilled urologist because only one side of the prostate can be felt.
Be careful! Prostate cancer is more common than all except the most common skin cancer. That is astounding when you consider that it only affects males.
Quote from: George999 on March 06, 2009, 11:09:05 AM
There are also things that can go wrong.
2) If you have had prostate cancer in the past, taking vitamin D can make that cancer more aggressive if any of it remains.
Quote from: Hawk on March 08, 2009, 10:00:05 PMHere in lies my entire concern which I have previously voiced. Many men that think they have not had prostate cancer, do in fact have it. ...Since most men on this forum are in the age group likely to harbor undetected prostate cancer, please exercise caution with vitamin D and testosterone replacement. Few general practitioners are savvy about recognizing the importance of PSA velocity which is far more important than the actual PSA level. Additionally, the most aggressive prostate cancers often produce little or no PSA. Digital exams while important, often fail to reveal cancer even to a very skilled urologist because only one side of the prostate can be felt.
Be careful! Prostate cancer is more common than all except the most common skin cancer. That is astounding when you consider that it only affects males.
so what would the most reliable method for screening for prostate cancer
A digital rectal exam during my routine yearly physical showed a normal, smooth prostate on me. I then had my blood drawn for a PSA test. Four days later my doctor called me and told me that my PSA levels had gone to 5 from 2.5 the previous year. That is a 100% increase. A mere 10% increase would be enough to raise concerns and call for a biopsy. I had absolutely no symtoms that would be associated with either cancer or BPH. In retrospect, I was having and had had periodic lower back pain that radiated down my leg. Three months before my exam I had a severe attack of back pain. My orthopedist could not find anything that would cause such pain. Since my operation, I have not had any lower back pain. Although I have no proof, I believe the pain was related to my cancer.
A DRE is not a reliable measure of prostate cancer. A PSA test necessary. The incidence of men in their 40's presenting with prostate cancer should be of great concern and testing should begin at age 40 and not at 50 as is the current protocol.
Hitman,
you asked in view of screening problems
Quoteso what is the most reliable method for screening for prostate cancer
The fact is that IF you have a tumor on the back side of the prostate and you have aggressive non-PSA producing prostate cancer that it is very unlikely to be caught early. That combination is in the clear minority of cases however. For instance my cancer was/is (?) very aggressive but fortunately did produce PSA. No one up to the day of surgery could ever detect it with a digital exam, even at the number 2 cancer center in the U.S. On the flip side, my friend had non-PSA producing disease that is ultra aggressive and his doctor did feel a change in his prostate even though his PSA never budged. While treatable, his cancer will not be cured however.
Walsh, (a leading expert) on p. 164 of "Dr. Walsh's Guide to Surviving Prostate Cancer", says:
"If you have a low PSA level (between 1.0 and 4.0 ng/ml), any increase is alarming. In a study using data from the Baltimore Longitudinal Study of Aging, Carter and colleagues found that PSA increases greater than 0.2-0.4 ng/ml per year were predictors of death from prostate cancer. Currently, change in PSA over time is the most valuable tool we have for interpreting PSA and for predicting prostate cancer, including whether it is life threatening."
This being said, PSA will rise from infection, or injury but a urologist knows how to sort through that.
Many family doctors can see a jump from 2.0 to 3.0 and conclude it is still under the theoretical level of concern which is 4.0 It would be a major mistake to follow such advice. A rise from 2.0 to 2.5 would be significant reason to see a urologist. Never take a statement "that your PSA seems fine". Ask for the numbers and track it. If you have a significant rise, see a urologist. Most will check more in depth. The PSA test and a digital exam should be an annual event for any man 50 or over and any man over 40 in a high risk group (father or brother with prostate cancer or black race). My sons established a baseline at 35 yrs old.
Digital exam and velocity of PSA rise is the best combination we have. There is also a more meaningful PSA test that measures Free PSA. Since it is a bit more expensive it is usually used after a suspicious test but the cost is only about $100 bucks.
My oncologist told me," what we do not know about prostate cancer is criminal. Breast cancer has clear answers to these questions but no one has even collected the existing data for prostate cancer to analyze it." Breast cancer research is about 7-8 years ahead of us.
PS: Maybe these posts should be moved to the "Off Topic" area.
I think we've come a long way though, but the research on prostate cancer should be more aggressive.
Hitman:
You have touched on the subject that all men should be concerned with about prostate cancer. If the research money that is spent on breast cancer was afforded research for prostate cancer, then we would be light years ahead of where we are today with treatments for PCA.
I belong to a cancer support group in my hometown called US TOO. This is an International organization that supports and assists prostate cancer patients before and after they have treatment of any kind. We have regular monthly meetings and work directly with local uro offices to assist them with their prostate cancer patients.
The organization has tried unsuccessfully to get Congressional attention for this subject, but we still try every opportunity we get.
Thanks for your concern and if you have a local chapter of US TOO, you might consider joining.
Old Man
Hitman,
Your exactly right, you've touched on the most discriminated group of people in the usa which is technically the adult white male, but adult males in general. Women are typically more vocal in their issues and cancers, men seem to cower away from controversial issues and topics and seem ashamed if they have "testicular cancer," or "prostate cancer." Hopefully this will change with the times! I can't count on two hands the number of breast cancer groups I see on facebook and other social networking sites, but look up prostate cancer and see what you get? The women even have a group called "Feel your boobies." ::)
Comebackid
give me 5 more years to become super-rich and then I will fund any prostate cancer research ;D
Just like "The Michael Milkin"
http://www.prostatecancerfoundation.org/site/c.itIWK2OSG/b.81488/k.BD5/Michael_Milkens_Story.htm ;D
Truely a story of one man with money and business skills making a lot of difference.
Hawk, Here I go again, but I think that this is important. Once its been seen, feel free to move it to off topic area. - George
Quote from: Health Day
Folic Acid Supplements Raise Prostate Cancer Risk (http://www.healthday.com/Article.asp?AID=624906)
A 10-year study has found that men who took folic acid supplements faced more than twice the risk of prostate cancer as those who didn't take the supplements.
George, Folic acid which is forced on us by being added to an wide array of foods has been implemented in several forms of cancer. High loads are also found in most multi-vitamions. Its appeal was because a deficiency can cause birth defects but since much of the population is not a canidate for carrying a fetus it seems crazy to push it on the entire population.
I usually stick to the RDA value of 200mcg for supplemental folic acid
some other studies
J Clin Oncol. 2008 Jul 1;26(19):3222-8.
Prediagnostic plasma folate and the risk of death in patients with colorectal cancer.
Wolpin BM, Wei EK, Ng K, Meyerhardt JA, Chan JA, Selhub J, Giovannucci EL, Fuchs CS.
Department of MedicalOncology, Dana-Farber Cancer Institute, Boston, MA, USA. bwolpin@partners.org
PURPOSE: Although previous studies have demonstrated an inverse relationship between folate intake and colorectal cancer risk, a recent trial suggests that supplemental folic acid may accelerate tumorigenesis among patients with a history of colorectal adenoma. Therefore, high priority has been given to research investigating the influence of folate on cancer progression in patients with colorectal cancer. PATIENTS AND METHODS: To investigate whether prediagnostic levels of plasma folate are associated with colorectal cancer-specific and overall mortality, we performed a prospective, nested observational study within two large US cohorts: the Nurses' Health Study and Health Professionals Follow-Up Study. We measured folate levels among 301 participants who developed colorectal cancer 2 or more years after their plasma was collected and compared participants using Cox proportional hazards models by quintile of plasma folate. RESULTS: Higher levels of plasma folate were not associated with an increased risk of colorectal cancer-specific or overall mortality. Compared with participants in the lowest quintile of plasma folate, those in the highest quintile experienced a multivariable-adjusted hazard ratio for colorectal cancer-specific mortality of 0.42 (95% CI, 0.20 0.88) and overall mortality of 0.46 (95% CI, 0.24 0.88). When the analysis was limited to participants whose plasma was collected within 5 years of cancer diagnosis, no detrimental effect of high plasma folate was noted. In subgroup analyses, no subgroup demonstrated worse survival among participants with higher plasma folate levels. CONCLUSION: In two large prospective cohorts, higher prediagnostic levels of plasma folate were not associated with an increased risk of colorectal cancer-specific or overall mortality.
PMID: 18591557
Pharmacoepidemiol Drug Saf. 2007 Oct;16(10):1111-9.
The use of folic acid antagonists and the risk of colorectal cancer.
Coogan PF, Rosenberg L.
Slone Epidemiology Center, Boston University, MA 02215, USA. pcoogan@bu.edu
PURPOSE: Since folate is associated with a reduced risk of colorectal cancer, we hypothesized that folic acid antagonists might increase the risk. We used data from a population-based case control study of medication use and colorectal cancer to evaluate the hypothesis. METHODS: Case patients with adenocarcinoma of the colon or rectum were ascertained from participating hospitals in Massachusetts and the Massachusetts cancer registry (MCR) from January 1, 2001, through November 30, 2004. Age-, sex-, and precinct-matched control subjects were chosen from Massachusetts town lists. Information on folic acid antagonist use and other relevant data were obtained from 1809 cases and 1809 matched controls by telephone interview and by a self-administered dietary questionnaire. We used logistic regression models to estimate odds ratios among 1229 case patients and 1165 control subjects who provided satisfactory dietary information and did not have Crohn's disease or ulcerative colitis. RESULTS: The odds ratio for colorectal cancer among regular users of folate-containing supplements was 0.7 (95%CI 0.6-0.9). The odds ratio for regular use of folic acid antagonists was 1.3 (95%CI 0.9-1.9). Contrary to expectation, the odds ratio was reduced in the highest category of alcohol consumption (OR = 0.5, 95%CI 0.2-1.2). The odds ratio was higher among users of drugs that inhibit dihydrofolate reductase (OR = 1.6, 95%CI 0.9-2.8) than drugs that work through other mechanisms (OR = 1.2, 95%CI 0.7-1.9). CONCLUSIONS: Our data provide little support for the hypothesis that regular folic acid antagonist use increases the risk of colorectal cancer. However, there is a suggestion that dihydrofolate reductase inhibitors specifically may increase the risk.
PMID: 17600846
Hum Reprod. 2008 May;23(5):1014-22.
The association of folate, zinc and antioxidant intake with sperm aneuploidy in healthy non-smoking men.
Young SS, Eskenazi B, Marchetti FM, Block G, Wyrobek AJ.
School of Public Health, University of California, 2150 Shattuck Avenue, Suite 600, Berkeley, CA 94704-7380, USA.
BACKGROUND: Little is known about the effect of paternal nutrition on aneuploidy in sperm. We investigated the association of normal dietary and supplement intake of folate, zinc and antioxidants (vitamin C, vitamin E and beta-carotene) with the frequency of aneuploidy in human sperm. METHODS: Sperm samples from 89 healthy, non-smoking men from a non-clinical setting were analysed for aneuploidy using fluorescent in situ hybridization with probes for chromosomes X, Y and 21. Daily total intake (diet and supplements) for zinc, folate, vitamin C, vitamin E and beta-carotene was derived from a food frequency questionnaire. Potential confounders were obtained from a self-administered questionnaire. RESULTS: After adjusting for covariates, men with high folate intake (>75th percentile) had lower frequencies of sperm with disomies X, 21, sex nullisomy, and a lower aggregate measure of sperm aneuploidy (P <or= 0.04) compared with men with lower intake. In adjusted continuous analyses, total folate intake was inversely associated with aggregate sperm aneuploidy (-3.6% change/100 microg folate; 95% CI: -6.3, -0. 8) and results were similar for disomies X, 21 and sex nullisomy. No consistent associations were found between antioxidant or zinc intakes and sperm aneuploidy. CONCLUSIONS: Men with high folate intake had lower overall frequencies of several types of aneuploid sperm.
PMID: 18353905
QuoteHawk, Here I go again, but I think that this is important. Once its been seen, feel free to move it to off topic area. - George
Quote from: Health Day
Folic Acid Supplements Raise Prostate Cancer Risk (http://www.healthday.com/Article.asp?AID=624906)
A 10-year study has found that men who took folic acid supplements faced more than twice the risk of prostate cancer as those who didn't take the supplements.
George, Folic acid which is forced on us by being added to an wide array of foods has been implicated in several forms of cancer. High loads are also found in most multi-vitamions. Its appeal was because a deficiency can cause birth defects but since much of the population is not a canidate for carrying a fetus it seems crazy to push it on the entire population.
I hope this is the proper thread for this query. I am just very desperate to get some advice. It's all very confusing. I haven't even seen a specialist yet - but based on all the symptoms and my GP's opinion it is Peyronies Disease. What can I take to stop the imflammation/pain? Is there any supplement/vitamin that is going to stop or slow this stage down? What about the everyday pain - even when flaccid??? Help please! :'(
Bertie,
There are many oral supplements that you can take, but the best one is Pentoxifylline, a.k.a. Pentox (Brand name: Trental). Search this forum for the term. There are links here that lead you to studies that conclude that not only does Pentox knock out the inflammation, it can actually curb and in some cases reverse fibrosis!
This is a long-term solution, but the sooner you can knock out the inflammation the better! I had the same problem you did, flaccid pain and all - after sex and masturbation, occasionally, I will get pain. I can literally feel my pain abate within an hour when I take pentox.
In my experience, doctors don't know about this drug in relation to Peyronies Disease. Check the other Forums - very recently one of our admistrators (I think it was Hawk) posted links to studies you can print out and take to your Urologist or GP, and hopefully convince him to get you on Pentox!
Interesting now that I'm back on pentox my molluscum skin virus has flared up again with red dots. It had decreased greatly after applying aldara ( a cream that helps jump start ones immune system) to recgonize my skin virus and destroy it. It seems that my immune system is weakened now in fighting off my skin virus, this is an interesting observation since I"ve had discussions in pms with george and tim. Knowing this I would caution anyone on pentox to be careful with sexual activity, if ones immune system is down you might be more likely to pick up std's. I would abstain from sexual contact altogether unless with one partner or use protection.
On the positive side, I've had a few side effects, none overwhelming though, and my erections are better, and better hang when flaccid.
Comebackid
comebackkid,
So what you are saying is that taking pentox might interfere with the immune system of the body. Then one would easier get a cold and stuff like or herpies etc. That sound interesting if your flare up of the skin problem is definitly due to the pentox. As i am one who just started taking it, i may try to pay attention to it in the future. I havent heard of any relationship to the immune system (less white blood cells etc.) in the literature, but am definitly going to get some blood tested after the 6 months period of taking pentox.
If anyone has some information in this direction, would be interesting
Thanks
Kenny
Kenny,
Its funny you made your post. Today I woke up and my red dots were worse on my back, arms, neck, and face, and now I have red round rashes that spread and look like little circles. They are often times present with molluscum. I already saw a dermatologist, he gave me aldara cream which strengthens ones immune system and helps your body recgonize your skin virus and destroy it. He said whatever I had warts, hpv (non-sexual) or molluscum this stuff will clear it. I went on three doses of this cream u put on individual dots. Layed off pentox for nearly two years and applied this stuff. It finally kicked in in the last four months and slowly faded the dots away, but then my peyronies slowly got worse and worse. Now I got back on pentox and it immediately gave me better erections, better flaccid hang and bigger size, and softer penis! But now my red dots have flared back again. I am essentially trying to balance my immune system from being to strong to to weak with two different problems now, what a mess!
It would appear pentox could weaken the immune system, this is not science, but i'm just warning those on it to be carefully sexually as you may be at risk for std's, aids etc... My molluscum is non sexual as I wasn't even sexually active, but you can get it from drinks, kisses, towels etc...
Just something to think about, and if you look up pentox it does deal with the auto immune system and blocking inflammation and what not. George has talked about this repeatedly.
comebackid
Peyronie's is caused by the Immune System attacking the body's own tissues. ANY drug that stops Peyronie's effectively does so by blocking the Immune System. That is just a fact of life. You increase the power of your Immune System, your Peyronie's flares up. You decrease it, you are more vulnerable to Pathogens and Cancer. The ONLY substance that has been shown to effectively reduce autoimmune syndromes (like Peyronie's) AND stop Pathogens and Cancer is Vitamin D. That is because Vitamin D is the key element that cues the Immune System as to what is "self" and what is "alien". All higher life forms have Vitamin D attached to their cells. All lower lifeforms and viruses do not. This is how the Immune System can tell the difference between a normal human cell and a bacterial cell for example. Vitamin D is also the key element that tells Cancer Cells to self destruct when their DNA gets damaged making them Cancerous. Without Vitamin D that doesn't happen. This is the biochemical background to this whole problem. - George
I got your point, but its good everyone else on the forum saw the explanation. The problem is I don't have a doctor who will check my vitamin D levels and or give me a light! I had to convince and fight enough just to get the pentox!! I used up all my capital to get that... so to say...
I am taking a multi vitamin with 400 IU of vitamin D although I don't know if this will be enough. I may switch to D3 gel caps soon. Also spring and sun will be back soon in my part of the country sooner than later, this may help if I get a lot of sun exposure.
It appears that there is no clear cut answer for me in this situation and that pentox appears to weaken or block the immune system, hence thats why it works!!! People that are pentox for a long time could be more likely to get sick, pick up germs, std's or even aids, this should be noted for anyone on the drug to be cautious while on the drug especially!
With all that being said I am seeing positive effects from pentox and it clearly is doing something!
Comebackid
"Dr. Mulhall:
Firstly, at 5 years the likelihood of your Peyronies Disease worsening at 5 years is practically zero unless you re-injure your penis. There is no good evidence that Pentox is of significant benefit, although many experts use it because of some experimental (non-human) evidence that it has a beneficial effects on Peyronies Disease cells. In speaking with Dr. Tom Lue who introduced this idea, he uses it now for men with calcified plaques to reduce calcium in the plaque. I have stopped using Pentox except for the latter patients. Pentox is a safe medication and will not have an effect on your immune system. There is no data that Vitamin D in combination is of any greater benefit."
I would disagree with the good doctor Mulhall, in fact the whole idea of pentox is to have an effect on your immune system so your body quits attacking your own penis tissues! This quote came from the apda site!
This is the stuff I used that helped me fight off my molluscum or whatever it was! http://www.aldara.com/
It says it will fight off skin diseases, but why does it activate the entire immune system then and make my peyronies worse!? Does anyone know of any other creams that can be tried that may not make my peyronies worse but still effectively fight skin diseases?
I looked up an exact description of aldara cream this is what it does :
"How does it work?
Aldara cream contains the active ingredient imiquimod, which is a type of medicine called an immunomodulator. It is used to treat three different skin conditions: genital warts, small superficial skin cancers and actinic keratoses.
Imiquimod acts by stimulating the body's own defence mechanisms. It is thought that it works by binding to immune cells in the skin, causing them to release natural defence chemicals called cytokines. One such cytokine is called alpha interferon.
Alpha interferon and other cytokines have many functions in the immune system. They help fight viral infections by preventing viruses from multiplying in cells. They also prevent abnormal or malignant cells from increasing in numbers."
Comebackid
Comebackid,
I am not sure you have begun to make the case that this cream activates the entire immune system and worsens Peyronies Disease. As I read your post, you "layed off of the Pentox for 2 years" while you were using the cream. The case is much stronger that stopping the Pentox caused the progression, not the cream.
Your case that the Pentox aggravates the skin condition seems to be a better case unless you stopped the cream when you went on the Pentox.
In reference to the quote you posted - I take issue that statement that Peyronies Disease does not progress after 5 years without an additional injury. Our polls and posting data indicate many men with repeated flair-ups with no perceivable re-injury. I guess you could theorize "micro injury" but where is the evidence of that? It seems very strange to me that someone that subscribes to the micro injury theory for Peyronies Disease would prescribe bimix and trimix injections for ED.
I also find it interesting how many docors shout out about how things they do not use "have no evidence". They remain silent that the things they do use (like colchicine), or theories they advocate (like micro trauma) also have no evidence.
Doctors as well as sites like this need to be consistant on their demands for and recognition of evidence.
Quote from: ComeBacKid on March 12, 2009, 10:50:01 PMAlso spring and sun will be back soon in my part of the country sooner than later, this may help if I get a lot of sun exposure.
Although the sun "feels good" and will likely be beneficial for your skin infection, it can also be destructive if you get to much of it. The major reason I use a lamp is that I can control the exposure time. In NO case should you get more than 20 minutes per day of direct sun on your back, and I would recommend no more than 10 minutes per day. But it needs to be EVERY day and at the time when the sun is the hottest. USE a timer! You can get a little kitchen timer for a pittance and save yourself from worse skin problems in the future. IF the sun proves helpful, then you will probably want to save up for a lamp which can provide you the same benefit year round. This is actually probably the best course of action you can take at this point. When it comes to the power of Vitamin D, I can tell you that large doses of it wiped out a fungal infection in my mouth in short order. I would also get the softgels and try to get at least 2,000IU per day, which is what the Vitamin D experts are recommending. - George
Hawk,
I should of been more clear in the last post. While I was off the pentox for two years, I got the aldara cream two years ago but didn't start using it for awhile. The reason I waited was becuase I feared exactly what is happening now, that it would make my peyronies worse. At first I just didn't use it and tried to let my natural immune system destroy the molluscum or whatever it is. I actually started applying hte aldara cream last summer and went through two or three packets of the stuff and it is expensive! Within the last four months it has kicked in noticeably and my dots have faded. The doctor said it would take awhile to jumpstart the immune system. When I questioned him on whether it would activate the entire immune system or just in the areas where my dots are, he said just in the area where my dots are because thats the only place you are putting the cream. One thing I noticed is I didn't have to put the cream on every single dot, if it was just applied to the dots on my back, it also took away ones on my face, neck arms, and the ones on my back. It appeared to work all over. While I can't prove that it is the reason my peyronies is getting worse I'm sure believe it is! Looking at what it does, and I've had this convo with george many times, it activates cykotines, the exact thing pentox blocks to reduce our immune system from attacking our body and causing inflammation which leads to hardening of tissue and shrinkage and fibrosis over a long time.
I'm open to what george says about vitamin D, but even if I got my levels perfect I'm not sure that would help, because if I"m still on pentox it is still blocking cykotines, in theory then if I dropped my dosage to one pill a day instead of three my red dots should go down a little, and if I up the dosage and keep it at three a day, instead of the two that i get most days now, it would flare up even more.
I will have to find a doctor who is willing to work with me on the vitamin D levels, I already used up all my "persuasion capital" with my current doctor to get pentox. If i go in and say it could be weakening my immune system he will get scared and pull me off of it!
As far as what the doctors say I couldn't agree with you more that while they harp against certain protocols, some medicines they prescribe have no evidence! One thing is for sure pentox is working in a positive manner for me, and I know the VED works as well to help gain back size slowly over time.
For the record, also my doctor uses aldara cream for more than just the mentioned problems on that site, any warts or "red bumps" he uses it for and says its very effective, hes a huge fan of it. Another thing I should add is that I finished my last aldara packet in september. Around this time I began to feel tiny pins and needles poking me in my back and on my body. Looking this up this is a sympton of an over active immune system. Now I can't prove this is caused by the aldara, b ut I've never had it before and I'd be willing to bet everything I own it was!
Comebackid
George,
Whats wrong with say taking 400IU or 100% of daily Vitamin D, even if its not a dry multi vitamin but a D3 gel cap? Why such high amounts like 1000 IU, is that much vitamin D not getting absorbed by the body?
One thing is for sure, there is more research to be done on prostate cancer, this seems like its a popular but "quiet" cancer and people don't talk about it in the mainstream to much or not enough!
I understand that if you take lots of vitamin E you will have more in the bloodstream. What I'm saying is, is it safe to take 4000IU of vitamin D, isnt there a point where just taking to much is dangerous or not healthy...
Yes, you can have too much Vitamin D in your system, that's why it needs to be monitored, especially if you're taking megadoses. That said, it may take megadoses to get your blood levels of Vit. D up to where they need to be, but here again, monitoring will ensure you don't go above and beyond healthy levels.
Nemo
Nemo,
Are you a doctor? How do you monitor the levels without paying for it or going to the doctor? I don't have a lot of extra cash at this point...
Comebackid
Quote from: ComeBacKid on March 13, 2009, 01:12:47 PM
I will have to find a doctor who is willing to work with me on the vitamin D levels, I already used up all my "persuasion capital" with my current doctor to get pentox.
You don't need to work through a doctor to get a vitamin D test. I'm participating in the Grassroots Health (http://grassrootshealth.org/) study. The cost is $30. Another option is to get the test linked on the vitamin D council site (http://vitamindcouncil.org/) for $65.
s&s
edit: fixed links
No, I'm not a doctor, and no, you can't monitor your Vitamin D levels without testing. Thus, that's why you shouldn't take megadoses without having access to testing (either through your doc or paying for testing on your own, as mentioned).
Nemo
are the g3 vitamin d gel capsules more preffered then the regulars?
I read a blog not long ago by a doctor who does Vitamin D repletion. I wish I could find it now but it lost in a maze of data. In this blog this doctor stated that he had gone to prescribing softgel vitamin D exclusively for his patients since, by testing, he had found the tablets extremely erratic in their level of assimilation. With the softgels he was able to raise blood levels of D much more precisely and proficiently. I wish I could offer a link for this, but my search for it has been in vain at this point. - George
luka-brasi,
You don't need to post the same message in different threads.
sorry, for that. it will not happen again.
Quote from: luka-brasi on March 16, 2009, 04:45:49 PM
sorry, for that. it will not happen again.
The duplicate post was deleted. Please take time to read the forum rules. They are a big part of the reason that there is finally a successful Peyronies Disease forum. https://www.peyroniesforum.net/index.php/topic,6.0.html
Nemo, good site! (but bad link). Here it is again:
http://grassrootshealth.org/
Tim
I often pop back and see what the latest updates are, in terms of supplements to use. I have been experiencing pain lately, seemingly out of the blue, so am very concerned that I'm on the verge of more nasty developments and/or a increased curvature. It can be very dispiriting.
Whenever I come here, I often see vitamin D being discussed. From looking at the study, I definitely think that it's a meaningful part of the puzzle in the it may help to reduce inflammation. I think we need to be careful about becoming fixated though. I rarely here anything about the vast array of different oral supplements that have previously been mentioned as useful (ALC, NAC, Arginine etc). This could be because no further studies are out, but I do think they should get a look in on occasion, as people may draw conclusions that are based in the moment and that's probably not the best approach.
For what its worth I'm still using pentox. It's hard to say whether it's been of use or not, but I'm sticking with it. If I had to make a judgement, i'd say that my current curve as definitely a few degrees better than pre pentox. However, the new pain may result in that progress being revered. I now have a very reliable source for pentox which is something I guess.
Last time when I was on pentox for 9 months I still got a shooting pain or ache in my penis. I often wondered if my peyronies will still worsening or not! In the end it did not get worse, I don't know what the pain is, but it could be a reversal of the plaque and that causes some slight pain or something? A good sign is if you don't have the constant ache or pain which I did not, that probably means your not getting worse!
Comebackid
Quote from: ComeBacKid on March 17, 2009, 12:03:05 PM
Last time when I was on pentox for 9 months I still got a shooting pain or ache in my penis. I often wondered if my peyronies will still worsening or not! In the end it did not get worse, I don't know what the pain is, but it could be a reversal of the plaque and that causes some slight pain or something? A good sign is if you don't have the constant ache or pain which I did not, that probably means your not getting worse!
Comebackid
Out of interest, whenever you experienced pain for a period of time (weeks, months etc) did it always lead to worsening of the curve? That's the confusing thing about this condition, it's very hard to say anything for certain. One persons experience can differ wildly from another persons. I've felt down about recent pain because I have assumed that it's a precursor a worsening of the curve.
Quote from: newguy on March 17, 2009, 12:47:06 PM
Out of interest, whenever you experienced pain for a period of time (weeks, months etc) did it always lead to worsening of the curve?
For certain, new plaque formation on the opposite side of the penis will CORRECT the curve but reduce length much like a Nesbit tuck.
Quote from: George999 on March 16, 2009, 11:11:30 AM
I read a blog not long ago by a doctor who does Vitamin D repletion. I wish I could find it now but it lost in a maze of data.
The Heart Scan Blog is one of my favorite blogs. Here is the posting (http://heartscanblog.blogspot.com/2009/02/what-vitamin-d-form.html) you were thinking of.
Dr. Davis writes:
QuoteThe only way to know whether a preparation is absorbed is to check a blood level. But, in my experience, having checked vitamin D blood levels thousands of times, gelcaps never fail; tablets fail over 80% of the time.
s&s
Quote from: Hawk on March 17, 2009, 01:04:36 PM
Quote from: newguy on March 17, 2009, 12:47:06 PM
Out of interest, whenever you experienced pain for a period of time (weeks, months etc) did it always lead to worsening of the curve?
For certain, new plaque formation on the opposite side of the penis will CORRECT the curve but reduce length much like a Nesbit tuck.
Most likely, yes, but my new pain is on the same side of the curve, hence should the pain result in eventual plaque, I will be in an even worse situation. Hopefully, my only hope at this point is to continue with supplements and hope the pain subsides, without any new plaque forming. As the two go hand in hand though (pain, then plaque), that is of some consern.
I'm laying off the VED for new, but if i notice any change in the curve in the coming months, I'll return back to it.
"For certain, new plaque formation on the opposite side of the penis will CORRECT the curve but reduce length much like a Nesbit tuck."
This is somewhat true as is what happened to me! I have plaque all around my penis and my penis straightnes out when erect, but when semi erect it bends to the right at a 30 degree angle. The problem is sometimes the plaque may come on the opposite side of the penis at a different place than the exact spot on the other side of the penis. We have to keep in mind that plaque can pop up anywhere on the penis unevenly, unsymmetrically.
Newguy- I'm not so sure pain means your penis is worsening. I had some aching shooting pains when I was on pentox for 9 months and my penis got better! I think if you have consistent aching pain that is not good!
Comebackid
Quote from: newguy on March 17, 2009, 11:44:12 AMI rarely here anything about the vast array of different oral supplements that have previously been mentioned as useful (ALC, NAC, Arginine etc). This could be because no further studies are out, but I do think they should get a look in on occasion, as people may draw conclusions that are based in the moment and that's probably not the best approach.
I find that I have to use a given supplement for a while to get a feel as to whether it seems helpful or not. There are quite a few supplements that seem helpful, but only a few that stand out. Of the three you have mentioned, I would pick the ALC and the Arginine. NAC is probably helpful, but not nearly as much as the other two. And of course nothing out there beats Pentox.
to all,
I ran out of ALC about 2 weeks ago and have been lazy and not re-ordered it - the coincidince is that for the last 2 weeks I have had pain again like when it all began - is there a correlation or is ALC that good??
you guys use plain arginine or SANS Vasoflow?
The study (http://findarticles.com/p/articles/mi_m0FDN/is_5_6/ai_80490890) showing ALCAR was beneficial used 1 gram twice daily. What have others found to be the optimal dose?
s&s
Quote from: slowandsteady on March 18, 2009, 10:41:49 AM
The study (http://findarticles.com/p/articles/mi_m0FDN/is_5_6/ai_80490890) showing ALCAR was beneficial used 1 gram twice daily. What have others found to be the optimal dose
I think we typically refer to it as ALC rather than ALCAR (just so new guys are not confused)
Dr. Levine recommends 2 grams a day
Quote from: Iceman on March 17, 2009, 08:51:59 PM
to all,
I ran out of ALC about 2 weeks ago and have been lazy and not re-ordered it - the coincidince is that for the last 2 weeks I have had pain again like when it all began - is there a correlation or is ALC that good??
I'm sure these questions have been asked ad nauseam...
What is the best kind of ALC? Best websites to purchase from?
Would anyone recommend taking ALC + Vasoflow?
Thanks in advance.
-DS
Quote from: Disposable Strategies on March 18, 2009, 10:07:44 PMI'm sure these questions have been asked ad nauseam...
What is the best kind of ALC? Best websites to purchase from?
Since the Jarrow product was discontinued, I'm going to get the Now brand ALC (http://www.iherb.com/ProductDetails.aspx?pid=373). Some people might prefer capsules since the taste of the powder in water is a bit sour. Doctors Best sells the exact same powder in a capsule that's a good value at iHerb (http://www.iherb.com/ProductDetails.aspx?pid=7779&at=0).
I'm wondering if it's a good idea to take or avoid R-alpha lipoic acid with it? I usually do, but I plan on stopping to better match what was used in the positive study on treating Peyronie's with ALC .
s&s
Quote from: Disposable Strategies on March 18, 2009, 10:07:44 PM
I'm sure these questions have been asked ad nauseam...
What is the best kind of ALC? Best websites to purchase from?
Would anyone recommend taking ALC + Vasoflow?
Using the "search" feature on the forum will help you find such information. I would recommend Puritan Pride at puritan.com. Best prices and independently found to have good potency and purity in their products.
There is no reason not to take ALC and L-Arginine together.
PS: familiarize yourself with search ;)
I'd recommend getting on pentox immediately if your in healthy condition and have a doctor who will prescribe it. Right now I'm on just that with a multi vitamin, not all the other junk! Pentox was proven by Dr. Lue to be effective, and I am once again noticing the positive effects of it. However, since I have no urologists near me who are willing to work with me and do a doppler ultra sound, I can't scientifically track if plaque is decreasing, or if calcifications are going away. I also don't know if I have any calcifications or fibrosis. One thing is for sure the pentox has positive effects including, better flaccid hang (looks like you just got done pumping with a VED constantly) size gain and straightening when erect, with full solid erections. And a softer feel when flaccid.
Comebackid
are there anymore suplements that can be useful for peyronies or just the penis? what does fish oil do?
Quote from: ComeBacKid on March 19, 2009, 06:59:40 PM
I'd recommend getting on pentox immediately if your in healthy condition and have a doctor who will prescribe it.
i agree fully with this
Quote shortened per forum rules - Hawk
can anyone let me know of any success with ALC + L arginine - I just ordered a whole lot - whats its real purpose in helping with Peyronies Disease - I mean how can these supps help with Peyronies Disease??
maybe Tim can help or anyone who knows a bit more than me.
Thx
A quick search on the forum or on Yahoo.com etc will give you more info. A quick and simple answer is that L-arginine is a precursor of nitric oxide (NO). NO is a vasodilator that relaxes the arteries. NO binds to receptorss on the artery walls in the penis (an elsewhere) and causes them to relax and allow more blood in. The same principle is used in nitro tabs or patches for angina pains in the heart. Also L-arginine is used by bodybuilders to get a pump and deliver nutrients to heavily worked muscles. Because it relaxes blood vessels caution should be used if you have low blood pressure since it could lower it further temporarily.
Viagra, Levitra, Cialis, all work by preventing the break down of NO so L-arginine helps produce NO and the ED drugs help preserve the NO.
I have forgotten some of the info on ALC but it has been associated with several positive health benefits with few if any problems. There was one old, small, Italian study that indicated a benefit for Peyronies Disease and many anecdotal stories here, especially for reduction of pain within a week or two.
Here's my current regimen, fwiw:
Boron: 9 mg/day
ALC: 3 g first thing on waking
Serrapeptase: 160,000 units on empty stomach in afternoon
Vitamin D: 7500 IU
Vitamin K2-MK4: substantial, but not actually measured in the supplement
Vitamin A: 5000 IU from cod liver - not synthetic
Vitamin E family: two of the Jarrow FamilE providing 500 mg of gamma tocopherol
Based on George999's thoughts that Peyronies might be primarily autoimmune in nature, I've decided to give boron a try. There is some evidence that boron works to treat arthritis. I'm going to continue this dose for about 3 weeks before backing off. Boron is also involved in calcium regulation. I have a finger with some arthritis pain that I notice when I type. After three days of boron, no pain at the moment. It cuts down on prostate cancer risk too, though for this purpose dosing perhaps at 3 mg from all sources would have the best science behind it.
My vitamin D dosage is based on my measured 25 hydroxy levels, and should get me to about 65 ng/ml.
Vitamin K and A I get from this product (http://www.drrons.com/blue-ice-butter-oil-cod-liver-oil-blend.htm). I'm going to try contacting the supplier to see if the quantity of vitamin K2-mk4 has ever actually been measured. I've been influenced lately by Weston Price thinking about vitamin A and synergies among the oil soluble vitamins A, D, K, and E. I'm still trying to form conclusions about optimal dosing and type of vitamin A, since there is a divergence of opinions out there on the subject.
s&s
Quote from: slowandsteady on March 23, 2009, 11:14:39 AM
Here's my current regimen, fwiw:
Boron: 9 mg/day ....
Boron is not well understood and I think that there has not even been recommended daily allowances set for it. Much about how it effects mammals is unknown but it does seem to reduce prostate cancer incidence and have some role in blood sugar and calcium levels. I would think 9mg is kind of high though and at some levels it becomes toxic.
Quote from: Hawk on March 23, 2009, 01:10:56 PM
I would think 9mg is kind of high though and at some levels it becomes toxic.
I did write that I'm taking this dosage for three weeks.
From Herb, Nutrients, and Drug Interactions (http://books.google.com/books?isbn=0323029647):
QuoteSupplemental/Maintenance: The optimal dose of boron for proper physiological function and prevention of osteoporosis appears to be 3 to 6 mg per day.
Pharmacological/Therapeutic: Pharmacological doses used in clinical studies range from less than 1 mg up to 12 mg per day. Administration of 3 mg three times daily constitutes a typical therapeutic dose in the treatment of arthritis. A trial period of 2 to 4 months is usually indicated. Individuals being treated for rheumatoid arthritis will generally report symptom amelioration within 4 weeks of beginning boron supplementation.
Toxic: The potential lethal dose for adults is estimated at 15 to 20 g per day; 150 mg per liter of water represents a toxic concentration of boron.
Breaking up the dosages to match that used for arthritis might have some value.
s&s
Very interesting! - George
Okay, fellas, here's one to inject some freshness in our discussion!
Besides Peyronie's, which I've lived with for the last 7 years, I also have suffered with a skin condition called Vitiligo for the last year or so. In my case, this means I have some patches of skin on my face that have lost all their pigment, the melanin just dissapears. I'd been receiving laser treatment at my dermotologist, but would you believe Vitiligo and Peyronie's have a lot in common - most doctors are woefully ignorant on either. I could tell my dermo didn't know much and his technician was actually triggering my Vitiligo to get worse by burning me with the laser occasionally (trauma can trigger), so I decided to go to an expert in the field in Los Angeles.
She's going to try a couple topical agents to help, a steroid cream and a cream that suppresses the immune response in the localized area. Much like Peyronies Disease, Vitiligo is thought to be the immune system overreacting and killing pigment off in localized areas.
We started talking about supplements and when I told her I was taking L-Arginine, ALC, and PLC, she said to stop. She said these amino acids basically mess with the immune system and could be responsible for causing the Vitiligo or making it worse. I explained that I have Peyronies Disease and these are supps thought to be benificial for Peyronies Disease. She didn't pursue it any farther, but I know she thinks I should cut these out.
My problem is this - I know these supps have helped my erectile performance - I get nocturnal erections since taking them (along with zinc) that I didn't get for several years. Frankly, I don't want to stop, especially the Arginine (San Vaso Flow).
She had an interesting take - she said she sees a lot more men with vitiligo these days and one thing she notices is a lot of men are taking amino acids these days too. She wasn't making any definitive statements, but she was clearly trying to raise a connection and shadow of doubt.
My question to George, Tim and anyone else with good working knowledge of such things is what are your thoughts? The beginning of my vitiligo predated the Arginine by a little bit, but not much. As I said, I really don't want to stop because of both the potential for helping Peyronies Disease and for the obvious impact these supps have on my erectile quality. For what it's worth, I'm working with a men's health doctor to address some metabolic issues and what may be adrenal fatigue or even some mild thyroid issues, so I'm trying to take a more global approach. However, I'd love to hear your thoughts on a link between amino acids triggering a bad immune response. I thought they worked to suppress that in the case of Peyronies Disease???
Nemo
Nemo,
Thanks for the information and update on your situation. I just want to add for everyone that even in the Dr. Lue study, only pentox is used, no l-arginine or ALC, these supplements haven't been study and are kind of unknown. You don't necessarily need them to treat peyronies, this is another reason I haven't rushed to get back on them. All these supplements and pills have so many different effects that spider-web through the body, its hard to say A causes B which causes C, its not always that simple to track or monitor. Even as we take these supplements we aren't properly documenting and tracking information like the doppler ultra sound which would of been great to get one done before my pentox, and a year later and track progress. We are in a tough spot with this rare disease! I wonder if they are doing dopplers with the xiaflex study?
Comebackid
I only just realised I'd received an email from Tim concerning my pentox source. I ordered my trental from the http://www.inhousepharmacy.co.uk website. The product isn't featured on the site, but I noticed that the FAQ section states that enquiries into products not feature on the site are welcome. Thankfully they were could to get hold on it for me. Reviews of inhousepharmacy on online drugs review sites are positive and the site has been online for years, so I feel comfortable with ordering from them. They have a US site here too: http://www.inhousepharmacy.com/
I have searched and can't seem to find the email address of the person I was put in contact with at the company, but if you email them at customerservices@inhousepharmacy.co.uk stating your interest they should be able to get it for you. If you have problems, drop me a PM and I'll try to get to the bottom of it. The last I heard they intended to add it to the site, but that doesn't appear to have happened yet. Maybe because it could be somewhat less popular than many of their offerings?
Quote from: Nemo on March 23, 2009, 08:18:24 PMWe started talking about supplements and when I told her I was taking L-Arginine, ALC, and PLC, she said to stop. She said these amino acids basically mess with the immune system and could be responsible for causing the Vitiligo or making it worse. I explained that I have Peyronies Disease and these are supps thought to be benificial for Peyronies Disease. She didn't pursue it any farther, but I know she thinks I should cut these out.
For starters, she's right about amino-acids messing with the immune system. For example, L-Arginine strengthens the immune system and is an essential component of the immune system. It also is a powerful antifibrotic. So, like a lot of other things, it is a two edged sword. For Peyronie's its definitely beneficial despite its dark side. For the Vitiligo, you won't get anything out of it but the dark side, maybe. Arginine also promotes cold sores by stimulating the virus that causes it to replicate, go figure. Nobody really knows all the subtle proclivities and perversities of these things.
However, ALC does just the opposite. One of its effects, in fact, is to suppress TNF-Alpha and I wouldn't be surprised if it suppressed TGF-beta1 as well. This is really a great topic and I'm glad you brought it up. It very clearly demonstrates how everything that is beneficial can also be the enemy. So, what to do? I certainly wouldn't quit the ALC, its likely to be beneficial for both. (
I misread the abstract :-[ the abstract indicates that ALC can actually increase levels of TNF-Alpha, although that effect hasn't been seen with oral use.) As for the Arginine, it may indeed be aggravating your Vitiligo. So it becomes a hard choice like the one that ComeBack is facing with Pentox. The ONLY substance I know of, once again, that both suppresses autoimmunity AND increases healthy immunity is Vitamin D. Everything else tends to be dicey. I would NOT agree with her that increased use of amino's is CAUSING these problems. I would attribute that to an epidemic of Vitamin D deficiency, but skin doctors typically are so biased against Vitamin D its pathetic. In fact skin doctors are prejudiced on a whole variety of supplements in my most humble opinion. They won't care much about your Peyronie's, in their opinion your penis is expendable, they only care about keeping your skin beautiful and cancer free. - George
(ALC and immune function) (http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2365445)
(Arginine and immune function) (http://www.ncbi.nlm.nih.gov/pubmed/2105184)
Vitamin D article (http://www.arabtimesonline.com/kuwaitnews/pagesdetails.asp?nid=30150&ccid=9)
Vitamin D article (http://www.healthday.com/Article.asp?AID=625331)
Quote from: ComeBacKid on March 23, 2009, 09:39:33 PM
I just want to add for everyone that even in the Dr. Lue study, only pentox is used, no l-arginine or ALC, these supplements haven't been study and are kind of unknown
Not true. ALC has been the subject of a randomized study in which it was compared to tamoxifen (PMID 11446848 (http://pubmed.gov/11446848)).
QuoteAcetyl-L-carnitine reduced penile curvature significantly, while tamoxifen did not; both drugs significantly reduced plaque size. Tamoxifen induced significantly more side-effects than acetyl-L-carnitine. CONCLUSIONS: These results suggest that acetyl-L-carnitine is significantly more effective and safe than tamoxifen in the therapy of acute and early chronic Peyronie's disease.
s&s
if ALC is so good why arn't more people talking about it - btw just downed another 1000mg.....yeh!! - bring it on...
Well, I guess I'll split the difference and reduce my Arginine consumption to half and only take one gram a day. George, what about PLC - how does that figure into this, good or bad?
Nemo
I meant a study in which pentox was included with it at the same time!
Comebackid
im gonna eat ALC + pentox like peanuts in a bowl - as much as i physically can
I wouldn't get too carried away with ALC. Three grams is causing restlessness at night with elevated heart rate, even though I took it in the morning. Your weight might play a role. I'm not huge at 145 pounds.
s&s
Quote from: Iceman on March 23, 2009, 11:52:09 PM
if ALC is so good why arn't more people talking about it -
To answer your question, I do not think it is "SO great". There was one study on Peyronies Disease. By any standard, the study was tiny which impacts the accuracy. Furthermore it was an Italian study and if you follow the forum you know that there seem to be dozens of studies coming out of Italy showing favorable results on treatments that:have no follow-up, cannot be duplicated, and are never heard from again. So the evidence is tentative and sketchy.
There is the very subjective, anecdotal stories here that it stops the pain and presumably the inflammation. There have been no accounts of any correction of deformity.
Finally, people here ARE talking about it. There are likely hundreds of posts dealing with the terms ALC or Acetyl L-Carnatine, or Carnatine.
I really think that one of the takeaways here in regard to supplements is that IF it works, beware! Just like prescription medicine, supplements that go beyond being a sugar pill, can and do have untoward and sometimes even dangerous side effects. So use what helps and NO more. AND what for side effects. Someone asked at one point on this forum why doctors only give 1200mg a day of Pentox if it is so good. The answer of course is that there is only so much the human body can take. There is a point of toxicity and/or unintended consequences for these things. In the case of Arginine, for instance, Nemo is doing the right thing. Just try backing down the intake. In many cases, side effects disappear before benefits disappear. I think it is really great that we are discussing this because we often think we have somehow found the silver bullet and overindulge. - George
And if you take too many sugar pills, you could develop diabetes! Ha, so NOTHING is safe if you don't use moderation.
Quote from: ocelot556 on March 24, 2009, 03:04:39 PM
And if you take too many sugar pills, you could develop diabetes! Ha, so NOTHING is safe if you don't use moderation.
Life is tough ...
Quote from: Iceman on March 24, 2009, 01:29:15 AM
im gonna eat ALC + pentox like peanuts in a bowl - as much as i physically can
That is not likely to help, but it probably will hurt you. Especially the pentox.
Tim
Quote from: slowandsteady on March 23, 2009, 11:14:39 AM
Here's my current regimen, fwiw:
Boron: 9 mg/day
ALC: 3 g first thing on waking
Serrapeptase: 160,000 units on empty stomach in afternoon
Vitamin D: 7500 IU
Vitamin K2-MK4: substantial, but not actually measured in the supplement
Vitamin A: 5000 IU from cod liver - not synthetic
Vitamin E family: two of the Jarrow FamilE providing 500 mg of gamma tocopherol
I'm cutting back the serrapeptase to 40,000 units; I'm concerned that 4x that might be dangerous. There's a nice thread on systemic enzymes at imminst (http://www.imminst.org/forum/index.php?showtopic=20645).
s&s
Hey all
About a month into pentox and L arginine. I'm pretty sure I have better feeling in my penis and that my erections are better. I can have and maintain erections better than before the treatment.
Is this in my head? Placebo effect? Has anyone else found this to be the case after such a short time? Either way, I am feeling more confident with the treatment! I'll be staying on the pentox for a long time to come.
Jonny,
Thanks for your post. No your not crazy, I noticed the same things, bigger and better flaccid hang, and much improved erections and they stay filled up, a lot less ED!!! Keep on taking pentox, don't quit! This is why I have been preaching this pentox, its the only thing I've done so far that has an almost immediate effect in a positive way! But more importantly it addresses the peyronies for the long term by blocking the immune system from attacking healthy tissue and keeping tissues inflamed and damaged, and doing further damage.
How bad is your bend now?
Before pentox did your penis feel "harder" than usual upon erection or when flaccid?
Comebackid
It did feel harder than normal when erect. It seems to have softened a little now, which is good. Will we be on pentox for the rest of our lives? Hmmm...interesting concept, but it seems problems arise when people get off of it.
I never had a bend, just a major indentation on the bottom and hourglassing. The indentation is still there, but the hourglassing effect seems to have tapered off slightly, can't say for certain though.
:)
Jason, If you look over this forum, you will find there are a number of non-surgical treatments available for Peyronie's. The problem is that none of them, including the traction device you are referencing, are curative at this point. They are all able to control Peyronie's in one way or another, but none is known to reliably cure Peyronie's. If I were you at this point, I would be doing everything possible to avoid contracting Peyronie's in the first place. #1 would be to get my serum vitamin D levels checked and normalized. More information on this can be found on the Vitamin D Council site (http://www.vitamindcouncil.org) and the Grass Roots Health site (http://www.grassrootshealth.org). #2 would be to be prepared to start taking Pentoxifylline immediately in the event of any trauma to your penis, however slight, or any pain in your penis. Pentoxifylline is a prescription drug that is the best drug approach to treating AND preventing Peyronie's if taken early. - George
Quotejleminster posted
I am a 39 year old male who has Dupuytren disease contracture and Lederhose disease. I am fearful now of contacting Peryonies disease as this falls into the same class of diseases. I am not a big fan of surgery.
jleminster,
Another suggestion if you want to try to avoid Peyronies Disease is to recognize symptoms of ANY type of ED early. You are getting to the 40-50 year range in age where our erections are not quite as firm as they used to be. Many men (including myself) tend to ignore signs of ED. My thinking was as long as it was "hard enough" for vaginal entry, then I was not going to even consider ED. Many confuse ED with the inability to not achieve any kind of erection. When in fact ED covers a whole range of not being able to achieve any erection.... to achieving one but it is not as hard as when we were 17.
The problem is once your erection is "not as hard as it used to be".... then you are more susceptible to trauma which can trigger the Peyronies scarring. This is what happened in my case. And the trauma isn't something tramatic like slamming your penis in a door or anything. It can simply be as simple as you pull out too far during intercourse, and you miss on the way back in. This can cause enough force to cause a bend in your erection if it isn't hard enough to avoid the bending. Think of a kink in a soda straw when bent too far.
Anyway..... once you recognize ANY softness in your erection as you start to age, do not be afraid to ask your doctor to try and start something like Cialis or Viagra. You'll be glad you did.
This is my first post on the forum, although I've been reading it for a couple months now. Basically, I just wanted to share me experience, and ask a few questions. I'm 33, and was diagnosed with Peyronies earlier this year. One day, I noticed a curve straight up about 50 degrees where before there was none. I don't remember any specific injury. My doc pointed out where the scar was (near the head), and the only thing close to pain during sex that I recall was more towards the base. (Does the scar always occur where the trauma was? I don't recall any trauma near the head.)
My medical history is pretty insignificant, except for some minor liver issues. But for the past ten years I have always had what I felt was poor bloodflow and decreasing sensation "down there", so I'm not sure if that has anything to do with this.
Anyway, I was prescribed Pentox about a month ago. Haven't noticed results yet, but I'm hopeful. I'm planning on going back in about three months for a follow up appointment, but now I realize there are other things than Pentox that can help. Specifically, I'm talking about the VED treatment, and adding L-arginine and viagra to the Pentox.
My question is this - since I've only had the disease for about three months, should I be in a rush to get on these things (since it seems the newer the disease the better chances of beating it), or is it ok to wait another three months before I see my doc? Also, is it ok to just add l-arginine to the pentox now, or is that something that I should ask my doc about first? I'd like to do what I can to improve, but don't want to take unnecessary risks. Finally, I know insurance policies vary, but will insurance usually cover these things? If so, will it usually be covered for a short time or for as long as peyronies is present?
I want to do everything I can to beat this.
I'll try to post my progress (hoping there is some) to help anyone else with this, and I appreciate any feedback you might have.
Thanks, Joe.
Quotejoecancer posted the following
My question is this - since I've only had the disease for about three months, should I be in a rush to get on these things (since it seems the newer the disease the better chances of beating it), or is it ok to wait another three months before I see my doc? Also, is it ok to just add l-arginine to the pentox now, or is that something that I should ask my doc about first?
joecancer,
Regarding your question about whether to be in a rush to start treatment. That's your decision. But I would think you would want to slow down or stop the process as soon as possible. In many cases of Peyronies Disease the initial curvature is quite sudden as you have described, and then another 10-20 degrees can set in more slowly over time. The Peyronies Disease plaque will calcify over time so you actually have a limited timeframe to try to correct the problem through medication.
Many of the guys on the forum take L-Arginine or L-Carnitine together with the Pentoxifyline. These are over the counter medications and I would think you could start this right away. Several on the forum also take vitamin E.
My question to you is why wait 3 months to start the treatment?
Les
JoeCancer,
You don't want to wait with peyronies disease, as the disease usually just keeps progressing, the sooner you can get to a doctor and get on some protocol the better.
Comebackid
Joe
Peyronies is nothing to hesitate with. Mine started in 1995. It caused a lot of other problems, you can read at Our Histories. IMHO the longer you wait to get proper treatment and get on the VED exercise the more damage that can happen to your penis.
Go to the VED thread there is a ton of information there. Also on the Child Boards is the 26 week VED exercise. I started the VED exercise about a year and a half ago and gained back almost 3/4" on lost length. Old Man was a great help.
There are a lot of members here that are willing to help. Any questions just ask.
Jackp
Joe,
Welcome to the forum. I have to say you picked a pretty ominous name.
I will be the 4th to echo the advise of do not wait. L-arginine is a supplement with no contraindications and there is no known or suggested reason not to take it.
I am interested in how your uro came to prescribe the Pentox. Was that your idea or his?
Have many of you experienced progression of your Peyronies Disease while on Pentox? I'm on 2 a day, but have been feeling sore lately with the first thunderstorms of the year coming in - my dick is like a barometer these days - and am worried that some of my plaques seem bigger.
Quote from: ocelot556 on March 30, 2009, 02:06:07 AM
Have many of you experienced progression of your Peyronies Disease while on Pentox? I'm on 2 a day, but have been feeling sore lately with the first thunderstorms of the year coming in - my dick is like a barometer these days - and am worried that some of my plaques seem bigger.
It's a long term medication, and as such I'd say that you should stick with it and have some confidence that it's likely to help your condition somewhat, and at least not make it worse :).
can you apply the full spec vitamin e to your skin? or should you do just the regular gel capsules of vitamin e?
Quote from: despise on March 30, 2009, 10:02:14 PM
can you apply the full spec vitamin e to your skin? or should you do just the regular gel capsules of vitamin e?
As a child, a scar I had was greatly reduced due to the use of vitamin E applied to the skin. Personally though, I don't think the Vit E would penetrate deep enough to be able to help peyronies. You could combine it maybe with substances which aid absorption, but that will likely allow other foreign bodies into the skin too and could cause additional problems. On top of this, it's hard to tell how much vitamin E helps peyronies. There's little risk in taking it orally though, since that's why many people do.
We have a good few tools at our disposal to aid with inflammation, though evidentally not enough, as inflammation still plagues some people. I wonder if there's anything else out that that could help, that we simply haven't thought of.
was reading on heart deas.forum and found angioprim is good for cloged arteris and so many other things in clouding ed.any one ever heard of it?
Quote from: George999 on March 23, 2009, 11:09:07 PM
...However, ALC does just the opposite. One of its effects, in fact, is to suppress TNF-Alpha and I wouldn't be surprised if it suppressed TGF-beta1 as well.
(ALC and immune function) (http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2365445)
George, in your link I see the opposite effect for ALC. Are you sure it suppresses TNF-alpha?
=> "Thus at 50/.tg/ml of acetyl-carnitine there was strong induction of TNF-alpha but not other cytokines. It should be mentioned, however, that oral administration of acetyl-carnitine did not result in significant modifications of TNF-alpha levels."
Though they mention that it didnt influence TNF alpha when taken orally.
Quote from: gerMike on March 31, 2009, 05:12:11 PM
George, in your link I see the opposite effect for ALC. Are you sure it suppresses TNF-alpha?
=> "Thus at 50/.tg/ml of acetyl-carnitine there was strong induction of TNF-alpha but not other cytokines. It should be mentioned, however, that oral administration of acetyl-carnitine did not result in significant modifications of TNF-alpha levels."
Though they mention that it didnt influence TNF alpha when taken orally.
Mike, Thanks for catching that. INDEED, I misread the abstract. You are exactly correct. My appologies for the misinformation. As you can see, I fixed my post. - George
In a followup to my previous message, after some badgering it now appears that Pentox will be available on the http://www.inhousepharmacy.co.uk/ website in around a weeks time. This is good news for those in the UK and Europe. I'm unsure of whether it will be added to the US site, but hopefully it will be.
Quote from: Hawk on March 29, 2009, 09:52:20 PM
Joe,
Welcome to the forum. I have to say you picked a pretty ominous name.
I will be the 4th to echo the advise of do not wait. L-arginine is a supplement with no contraindications and there is no known or suggested reason not to take it.
I am interested in how your uro came to prescribe the Pentox. Was that your idea or his?
It was his idea. I actually went to one other doc before that, and he just gave me vitamin E. I found out that this other doc specializes in peyronies (or belongs to some association of peyronies docs), so I went to him and he gave me the pentox.
my question is if full spec vitamin e is better for the skin then just regular vitamin e. i know its good for scars thats why im asking should i just apply regular vitamin e or full spec? im orally taking full spec vitamin e everyday but i also want to apply to it my skin sooo? and i asked this before but no one answered. what does fish oil do? ive heard people talk about it but what does it do? is there anything i should be taking other then vitamin e and vitamin d? should i get the gel capsule vitamin d3?
despise - I would certainly go for the full spec Vitamin E. As for the fish oil, I'm not certain, but I would guess that it can have a mild anti-inflammatory effect, so it's something that people throw into their regime. Aside from those items listed, I would suggest pentox if that is available to you.
newguy thank you so much for your post! very appreciated! =) yes once i get my insurance im going to talk to another urologist. if he comes to the conclusion i only have peyronies even after a cycostopy then im definetly going to be demaning pentox. everyone on this forum seems to have good results for it. it saddens me i can't find out and get things better but i guess i just gotta tough it out for now. im going to look up more about fish oil. i am having a lot of swelling and well if it that will help then i need it.
Don't lose hope. It seems like you're being very proactive, so all you can in continue with your efforts and the rest is in the lap of the Gods. It's possible to buy pentox online, so if you have no luck with a urologist you could go that route. Maybe in the meantime you could take ibuprofen for a couple of weeks and see if that reduces inflammation at all.
Don't go in demanding pentox. First print out the studies off this site and take them in with you. Make your case and display your evidence to your doctor and point out how safe pentox is, and if your completely healthy, point that out to. I've heard many on here say you need six months, I think more like 9 months or even a year is necessary, at least for me my first time around. I'd request as many months prescription as you can!
Comebackid
So George, should we take ALC and if so how much?
Quote from: phil on April 03, 2009, 11:50:25 PM
So George, should we take ALC and if so how much?
Phil, I think that is something only you can decide. There is SOME evidence that ALC is helpful. There are a lot of testimonials (including my own) to the same effect, but they are not really worth a whole lot. About the only thing you can do is to look it over and give it a try and see if it SEEMS to be helpful for you. Personally, it seemed extremely helpful to me for a long period. So I took it, about 2-3g of it a day. Then I seemed to be having a problem with it and stopped it. It turned out the ALC was not the root of the problem and so now I am taking it again, but only 1g per day. When I finish my supply on hand I will probably be discontinuing it. My current focus is on Pentox and Vitamin D, everything else is pretty much additional to that and dispensable. - George
Hi guys, havent logged on in a while. I have been using the vaccuum pump for a while now, with not much improvement. My question today is about protein powders used in weightlifting and glucosamin chondroitin used for pain in the joints. Has anyone heard how these might affect Peyronies Disease. I thought I read somewhere where protein and amino acid supplements could make peyronies worse. I called my uro and he gave me the ok but I just cant shake this feeling that I read about these products not being good for peyronies. anyone else hear this?
There have been some anecdotal reports against glucosamin chondroitin and at least some logic for suspecting them for having a possible negative impact since they are supposed to help generate the type of collagen found in Peyronies Disease. I am a bit skeptical but I am cautious and do not use them.
As far as whey protein is concerned, I only ever heard it suspected by one member. I have used it off and on in varying doses for decades and never noticed any correlation with Peyronies Disease progression or flare-ups. Whey protein has many advantages in general health too numerous to mention here.
I suspect that something like whey protein might be a problem for some people and not others. I think that if we start to nitpick all the stuff that *might* be harmful or that somebody thinks is harmful, we will rapidly be left with little in our diets. So we do have to remember that we are individuals and when we read that a beta blocker caused somebody to have Peyronie's, we need to think twice before we up and quit out beta blocker medication. If we can successfully transition on to a better med or a better diet, that is a good thing. But just to drop things that have other beneficial, perhaps even life-savingly beneficial effects is just stupid. Thats why I sometimes get a little uncomfortable with too much fixation on suspected "causes". On the other hand, if something is very perceptibly making things worse, by all means, do something about it. - George
George what does ACL do? does it help take down inflammation? would you reccomend me getting it? is it expensive?
George,
I found this online from the wikipedia in regards to Vitamin D:
"In the absence of vitamin K or with drugs (particularly blood thinners) that interfere with Vitamin K metabolism, Vitamin D can promote soft tissue calcification."
Asssuming one is on a multi vitamin like me with 400 IU or 100% of vitamin D, and I"m on a blood thinner like pentox, isnt that bad, if vitamin D promotes soft tissue calcification?
Comebackid
Quote from: George999 on April 05, 2009, 11:46:40 AM
I suspect that something like whey protein might be a problem for some people and not others.
George, I agree that individuals are uh....well individual. We all respond somewhat differently to foods, drugs, diseases. My first thoughts about whey protein is that it is protein. It is just an array of amino acids that form a "complete protein". The amino acids are those found in other foods like soy, beans and especially meat but without the fat load that meat carries. It is easier to digest and assimilate.
If you think whey protein could have some direct effect on Peyronies Disease, is that based on a response you have noticed and seemed to pinpoint an association with in yourself or have you heard of some mechanism associated with a component of whey that is not present in other foods?
This is why I recommend anyone taking Vitamin D take at least a small amount of Vitamin K daily. Over the last six months I have been taking large amounts (12,000IU per day) of Vitamin D in order to get my blood levels up where I think they should be. Along the way, I have been taking 500mcg of K1. I am now taking 90mcg of K2 per day. The problem here is that fixing vitamin D levels can reveal (or perhaps cause) a deficiency in vitamin K. The blood thinner issue is NOT a problem with Pentox, it is ONLY a problem with blood thinners that specifically target vitamin K, like Coumadin. People on something like coumadin should NOT be taking large amounts of vitamin D. - George
Quote from: ComeBacKid on April 07, 2009, 01:32:08 AM
George,
I found this online from the wikipedia in regards to Vitamin D:
"In the absence of vitamin K or with drugs (particularly blood thinners) that interfere with Vitamin K metabolism, Vitamin D can promote soft tissue calcification."
Asssuming one is on a multi vitamin like me with 400 IU or 100% of vitamin D, and I"m on a blood thinner like pentox, isnt that bad, if vitamin D promotes soft tissue calcification?
Comebackid
Quote from: Hawk on April 07, 2009, 11:06:07 AM
If you think whey protein could have some direct effect on Peyronies Disease, is that based on a response you have noticed and seemed to pinpoint an association with in yourself or have you heard of some mechanism associated with a component of whey that is not present in other foods?
Hawk, the whole issue surrounding a possible immune system connection with Arginine has caused me to seriously rethink this whole amino acid thing. It makes it apparent that SOME amino acids, INCLUDING ARGININE, can have a subtle stimulating effect on the immune system. And that would make them a possible two edged sword when it comes to Peyronies. Arginine, for example, could be producing obvious benefits, while at the same time promoting not as obvious pro-inflammatory processes. This could also be the case with horney goat weed since horney goat weed is usually formulated with maca. Maca contains copious amounts of readily available arginine. And if arginine can cause subtle changes in the immune system, so can a host of other amino's and even foods, since they are loaded with amino's themselves. I just ordered a whole container of VasoFlow, but now that is on hold, since it seemed to promote a flare up in my neuropathy symptoms. If it is doing that to my legs, I wonder what it may also be doing to my penis? - George
Disclosure: I AM still using whey protein in moderation. I guess I'm just hoping that the nutritional benefits outweigh the potential liabilities. And I guess that is where we all stand. We each have to weight potential benefits against potential liabilities and make a decision.
Here is an article outlining new evidence of a link between vitamin D deficiency and an increase in systemic inflammation levels.
Quote from: insciences
Vitamin D Deficiency Related to Increased Inflammation in Healthy Women, MU Study Finds (http://insciences.org/article.php?article_id=4113)
Increased concentrations of serum TNF-α, an inflammatory marker, were found in women who had insufficient vitamin D levels. This study is the first to find an inverse relationship between vitamin D levels and concentrations of TNF-α in a healthy, non-diseased population. This may explain the vitamin's role in the prevention and treatment of inflammatory diseases, including heart disease, multiple sclerosis and rheumatoid arthritis.
I do think that especially in certain climates Vitamin D deficiencies are rife. Here in the UK, milk is not typically fortified with Vitamin D and it's only sunny for about 2 months of the year. So, from that perspective I do think that Vitamin D is very useful.
Many, many studies also prove to me at least, that it is a valid addition to a peyronie's regime. I do worry about the increased risk of soft tissue calcification, and don't truly believe that anyone knows for sure how much Vit K to use, or whether it's actually possible to totally remove this concern, but with many studies stating beneficial anti inflamatory qualities, it'd be a mistake not to take Vit D supplements. There's a good argument around "how much is too much?", and I do think that we talk about Vitamin D way too much around here, but with new studies coming out frequently, it's an inevitability. These cancer risk studies are of concern, but I think i've found a balance, so am not shovelling what I deem to be excess amounts of any supplement down my throat.
Just a quick mention of a rather breakthrough method of treating prostate cancer:
http://www.healthday.com/Article.asp?AID=625875 (http://www.healthday.com/Article.asp?AID=625875)
Since I started the whole "rethinking amino acids" thing with my tale of how a dermatologist questioned whether my Arginine supplements might be causing my Vitiligo skin condition by "messing with the immune system" (vitiligo is an auto-immune condition), I should follow up.
I voiced the dermotologist's concern to my specialist, a behavioral neuroendocrinologist, and he said he felt the amount of Arginine I was taking (2 grams a day) in all likelihood had nothing to do with an auto-immune response like vitiligo. He rightly pointed out that there's as much or more arginine in a big steak or an egg as I was taking.
He is also the one who put me on Vit D, 10,000IU a day, as I tested at 32 and he wanted to bring my level up. Recently, I tested again and my level was up to 50, so that's definitely working. I am taking some K with it (not at his recomendation), but who knows if it's the right amount or not - I guess it's a shot in the dark. Glad to see my D coming up though.
Nemo
Nemo, I think you are correct that the amount of arginine we would be taking is not likely to tip the scales in terms of an immune response, however I do have some reservations about the VasoFlow formula in this regard in that I wonder if it might not be causing arginine to "back up" systemically to a point where there might be an unhelpful immune response. So I do think this is potentially a very individual thing where it might benefit one individual while another not so much while another it *might* be potential negative. In any case, I am not going to take it for a while until things really settle down. My erections are actually so much better after having my vitamin D levels raised for a while that I really don't need it all the much now anyway. - George
I have two brands of whey protein in the house "EAS" (major brand) and "Body Fortress" from Walmart. They have 630mg and 400 mg of arginine respectively (per serving). Total protein per serving is about 24 grams.
Out of curiosity I looked up arginine content of foods and found that a steak has 5000-6000 mg or ten times the content of a serving of whey protein. It is also double what most any of us would take in the form of an arginine supplement like Vasoflow.
http://www.traditionaloven.com/tutorials/l-lysine_rich_foods.html
This raises a few questions like: why not eat a burger instead of taking an arginine supplement and why does it not seem to give the result of arginine supplements? Next, IF whey can cause any response in a person's Peyronies Disease for the good or bad, it must not be the arginine content because it is modest compared to the content of arginine in many other foods we likely eat every day.
Does anyone know anything about Whole Oat Powder (avena sativa). It's in a gnc vitamin pack I got, which also includes 1000 mg l-arginine. Is this the same things as oats? Anyone know if it's safe to take? Apparently it is supposed to improve sexual function, but I'm not exactly sure how.
Joe,
There is no evidence that arginine has any negative effect on Peyronies Disease. In fact the cutting edge specialists with an emphasis in Peyronies Disease prescribe the combination or L-Argine, Viagra, and Pentox. It is likely to help. Any individual can have a rare reaction or response to almost anything, but a negative response would NOT be the norm.
Just for the record here, I agree pretty much with Hawk on this. In our discussion of arginine, I think we are pretty much in the realm of splitting hairs. I think the likelihood of it being helpful is really a quantum higher than the potential for it being harmful. So UNLESS one has reason to believe it is actually causing them a problem ... like ... I take it, things get worse ... I stop it, things get better ... I start it again, things get worse ... etc. UNLESS you really KNOW it IS causing you a problem, it is probably beneficial. And this whole conversation could go far beyond arginine. Almost everything in our food chain has some remote potential for causing harm. Such is the danger of carrying nit picking to far. You can end up starving in fear of every food item on the planet. So all of this needs some degree of perspective. If you are having good vigorous nocturnal erections, you can probably do without extra arginine, but if there is some measure of doubt about that, arginine will almost certainly cause you more benefit than harm. And in many ways, I still am convinced that SANN VasoFlow is just about the best most effective arginine formula out there. And I've used it for several years now. - George
"This is why I recommend anyone taking Vitamin D take at least a small amount of Vitamin K daily. Over the last six months I have been taking large amounts (12,000IU per day) of Vitamin D in order to get my blood levels up where I think they should be. Along the way, I have been taking 500mcg of K1. I am now taking 90mcg of K2 per day. The problem here is that fixing vitamin D levels can reveal (or perhaps cause) a deficiency in vitamin K. The blood thinner issue is NOT a problem with Pentox, it is ONLY a problem with blood thinners that specifically target vitamin K, like Coumadin. People on something like coumadin should NOT be taking large amounts of vitamin D. - George"
George so your saying if I'm taking a multi vitamin that has the 100% recommended daily value of vitamin D and K then I'm safe?
Comebackid
ComebackKid - George is suggesting that people take much more than 100% daily recommended value in order to get Vitamin D levels up. Of course taking a multi vitamin is useful but I can't see it elevating your vitamin D levels much.
Newguy,
I wasn't inferring how much vitamin D I need to take, but how much vitamin K is needed when one takes vitamin D to offset any tissue calcification...
Comebackid
Comeback, check, your multi might have some K in it too. The bottom line is no one seems to know how much K to take in relation to D ... that question has come up before, the answer is elusive.
Nemo
Comebackkid - Oh right, refering to the ratio used in multi vitamins and extrapolating based on that? How much vitamin K to take seems to be a bit of a mystery really, so I guess it would pay to take more rather than less to be on the safe side. However, maybe there are side effects that I'm unaware of relating to K. Of course, "eating your greens" won't hurt either :)
My multi-vitamin has 33% of the daily vitamin K and 100% of the daily vitamin D. There is probably a reason they only put in 33%, perhaps you can easily get vitamin K from another food, or you don't need as much of it...
Comebackid
ComebackKid - I don't personally think that the amount of Vitamin K offered in multi vitamins has much to do with their perceived relationship to one vitamin D, or any considerations such as calcification, as this is something that only becomes an issue with large doses so I don't think it would factor ito their reasoning. My multivitamin for instance offers 50% of the RDA of K. I do agree that Vitamin K is easier to get from food though.
What is apparent to be is that Vitamin K is vital when increased doses of Vitamin D are taken, and as such I'm be inclined to ensure that my diet is rich in Vitamin K from supplmements and food. From wikipedia:
QuoteVitamin K is found chiefly in leafy green vegetables such as spinach, swiss chard, and Brassica (e.g. cabbage, kale, cauliflower, broccoli, and brussels sprouts); some fruits such as avocado and kiwifruit are also high in Vitamin K. By way of reference, two tablespoons of parsley contain 153% of the recommended daily amount of vitamin K. Some vegetable oils, notably soybean, contain vitamin K, but at levels that would require relatively large caloric consumption to meet the USDA recommended levels
In addition, eggs and meat contain Vitamin K2, so thankfully there are a great many options for us :).
Here's a forum post elsewhere citing a few studies relating to how Vitamin K can help to redcue calcification:
http://www.thisisms.com/ftopict-6545.html
I'd say that the best way forward is to ensure a plentiful supply of Vitamin D within skimping on Vitamin K, as calcifiction is of course the last thing we need. I do think Vitamin D is an important part of the inflammation preven tion puzzle, and as such we need to ensure that we're maximising the benefits, while reducing the drawbacks.
alexk - can you give us a sneak preview now and elaborate later...please...
alexk - In line with the below comments, can you elaborate a little on your experience with peyronies? The time periods, pain, curve details etc. I checked your post history and couldn't find much relating to this. If we have a positive story on our hands, it'd be nice to know more :).
I list only my personal results, nothing more. I took 3 grams of ALC a day for months and slept like a baby. I have never read on any nutrition site that it interfered with sleep.
im back having a bit of pain - could it be tribulus - does anyone take this and does anyone have any info on this etc
just thought I post this
Here is a link on LEF's website about testosterone and prostate cancer
http://www.lef.org/magazine/mag2008/dec2008_Destroying-the-Myth-about-Testosterone-Replacement-Prostate-Cancer_01.htm.
The idea that testosterone replacement will make prostate cancer grow is called "the Huggins myth" in two journal articles. LEF's conclusions:
Low blood levels of testosterone do not protect against prostate cancer and, indeed, may increase the risk.
High blood levels of testosterone do not increase the risk of prostate cancer.
Treatment with testosterone does not increase the risk of prostate cancer, even among men who are already at high risk for it.
I also found this rather interesting reference about zinc citrate PMID: 18310092
Nice find, Hitman. It seems the medical establishment is really opposed for whatever reason to testosterone treatment, even though it's been documented that a lot of age-related maladies have a direct relation to the decrease in testosterone production in the body as a man ages.
I keep coming back to that endo who believes that androgen replacement is the cure for all penile fibrosis. I'm no scientist, but I think history will prove his conclusions true.
Update from my side.
I had a hell of pain all the time in my left leg and my left side of the penis. My penis was permanently contracted and shrunken, hard and felt like dead.
The pain suddenly disappeared in the last days. My penis is now fuller all the day (makes me feel a lot better) and I started to wake up with some morning erections. I noticed that my increased intake of VitD (raised from 1000UI to 5000UI daily) had some effect on the pain. Basically I think my VitD levels are depleted because of the constant inflammation thats going on down there. But thats not the only thing I changed.
I started taking Testogel to treat my low testosterone level (240ng/dl), added 2x600mg Ibuprofen for 3 days and reduced it to 1 time Ibuprofen, increased my intake of Full spectrum VitE from 400UI to 800UI daily. I'm not sure what really helped but wanted to inform you about the disappearing pain and fuller penis since that was very stressing all the time.
My current daily intake:
4x Potaba 3g (for years, difficult to say if it had some effect, maybe less curvature)
1x 25mg Testogel
4x 300mg Pentox
2x 400UI VitE (1x before)
1x 5000UI VitD (1000UI before)
1x MK-7 (Vit K2)
1x Ibuprofen 600 (try to reduce to zero from time to time)
2x Incense capsules (against chronic inflammatory conditions)
2x 800mg L-Arginin
Stopped intake of Acetyl-L-Carnitine
I know its a big list and I changed too much but I was stressed about the pain and the penis that I tried some more change at once.
My recommendation for somebody with pain would be a try of Ibuprofen and check if that helps. Keeping inflammation down is most important in my opinion. Chronic inflammation can lead to so many problems and could affect the whole body, your heart, your vessels and what else. I also noticed that the pain subsided a day after I was in a solarium. Beside that, pain can cause serious stress as it was in my case. I stopped the VED treatment because I had the feeling that the VED excercises increase problems for an inflamed penis.
Hope this information helps someone.
I to had the shrunken hard, feeling and pain shooting down my leg and penis. I went on pentox and multi vitamin and the pain went away, and my penis was really full, and much improved erections. You could probably cut all that crap and bs out and just take pentox. The problem with taking that many things at once is that you don't know what is really working!
But at least something is doing the trick for you, thats excellent!
Comebackid
in my case all pain had ceased after VED usage and penis is more pink. however i have a lot of other areas to cover.
The use of a
SPECIAL form of Vitamin D in the treatment of late stage prostate cancer is in Phase II testing with excellent results being seen thus far.
Quote from: MedPage Today
Vitamin D Analog Safe in Prostate Cancer (http://www.medpagetoday.com/Urology/ProstateCancer/13794)
The drugmaker said inecalcitol is more potent and less toxic than calcitriol, the natural active metabolite of vitamin D3, and the company called its clinical tolerance in the study so far "excellent."
Although the study is not designed to test the efficacy of the combination, 31 evaluable patients have completed the full 18 weeks of treatment at different doses up to 600 micrograms a day.
Of those, the company said, 27 showed a decrease in prostate specific antigen (PSA) levels of more than 30% within three months of starting treatment.
That translates into a response rate to the combination of 87%, which is higher than the 65% response rate seen in clinical trials of docetaxel alone.
Even though this has nothing to do with Peyronie's directly, many guys with Peyronie's are also concerned with the issue of Prostate Cancer and any new successful approaches in the treatment of Prostate Cancer is certainly welcome news for the members of this community. Do note that the vitamin D being used is NOT off the shelf Vitamin D.
It is a special form being used specifically for this purpose. The usual forms of vitamin D will NOT make Prostate Cancer better and are likely to make it worse. - George
Zinc citrate seems to be also beneficial in prostate cancer
Hi everyone
I'm new here so hope this is the right place to ask. Do any of you know of reputable places where I might purchase Pentoxifylline online?
I've noticed a couple of members here have mentioned that they get theirs online, and I'd like to go down that route whilst I locate a specialist urologist
Thanks very much
Dan
Dan - I bought mine from http://www.inhousepharmacy.co.uk . It's not on the main site, but if you email them, they can get it for you. I keep emailing concerning actually placing on the site for the sake of convenience, but they haven't exactly proved to be speedy regarding this request.
Is it of difference to take 4x 300mg Pentox instead 3x 400mg? The peak blood levels imo are different. For me pentox seems not to help to stop the condition from worsening. Thats why I bothered with that question. If I take 400mg instead 300mg its a bit different, mostly I get a faster heartbeat and my appetite is lower or absent. So taking 300mg at once is more comfortable for me with less side effects but I'm really unsure whether the good effects of it are affected too.
Dan, I've oredered Pentox (Trental) several times from mexmeds4you.com, a Mexican online pharmacy. I've found them to be reliable and legit.
Nemo
Quote from: gerMike on April 19, 2009, 05:25:43 PM
Is it of difference to take 4x 300mg Pentox instead 3x 400mg? The peak blood levels imo are different. For me pentox seems not to help to stop the condition from worsening. Thats why I bothered with that question. If I take 400mg instead 300mg its a bit different, mostly I get a faster heartbeat and my appetite is lower or absent. So taking 300mg at once is more comfortable for me with less side effects but I'm really unsure whether the good effects of it are affected too.
germike - are you saying that youve had no noticeable benefit from pentox - even pain reduction??
I think Pentox is more effective in some rather others. That said there is sound reason for thinking that it can be of use, and therefore I'd always encourage people to take it, especially in the early stages of the disease.
Quote from: newguy on March 31, 2009, 08:25:32 PM
In a followup to my previous message, after some badgering it now appears that Pentox will be available on the http://www.inhousepharmacy.co.uk/ website in around a weeks time. This is good news for those in the UK and Europe. I'm unsure of whether it will be added to the US site, but hopefully it will be.
Is it available yet? This would be great for those of us in Europe. I haven't seen it on the site yet.
Is there any better study out yet detailing the positive effects of Pentox except the one from Dr. Lue with one patient?
I am seeing a urologist soon and last time that study didn't help in getting any Pentox (which I now get online instead).
Bluth - To my knowledge, it is available there (as I ordered months ago). I keep pestering the site owner to place it on the site, and it appears that it will happen, I'm just not sure when. If you send an email via the site they can get it for you though. Maybe that will tip the balance, and they'll finally add it :).
As for your comments about pentox studies, it would certainly be helpful. Much of what is known relates to one case, or has a lot of theory behind it but nothing solid. Still, the doctor pdf detailing pentox as ,oderately helpful is at least somewhat positive, because it suggests that it was been of use in treating patients.
It's no doubt quite difficult to demonstrate success treating this disease, because if treatment is delivered before deformity develops, then it's not easy to tell how much a potential problem has been lessened. If it's given too far into the disease, maybe the benefits will be minimal. It's a disease whose fingerprint varies for each individual, and as such it's probably not the easiest thing in the world to research.
In the inflammatory stage, ibuprofen can no doubt be of use to people. It doesn't exactly go easy on the stomach though, and you have to be very careful with dosing. I mentioned topical ibuprofin once before, but am returning to it now after a few studies I've read up on. The studies appear to state that topical ibuprofen is as useful against inflammation as the oral version. This is surely positive, as it can be applied locally and much less of it is absorbed into the blood. It's of course hard to tell how deep it penetrates, but the data must at least suggest that it penetrates as well locally as oral ibuprofen does across the whole body. I'm not suggesting that this is a powerful tool againsty peyronie's, but rather that side effects can possibly be limited by choosing topical over oral.
What are your views?
http://www.medicine.ox.ac.uk/bandolier/booth/painpag/topical/topkin.html (Topical or oral non-steroidal anti-inflammatories in soft tissue injury)
QuoteThis brief review confirms the view of others [2], that the maximum values found after topical administration of NSAIDs is a small fraction of that expected after usual oral doses of the same NSAID. These low systemic concentrations probably account for the low occurrence of gastrointestinal adverse events with topical NSAIDs.
As best we can tell, synovial fluid concentrations are likely to reflect blood concentrations because this is a highly vascularised compartment. For instance, when topical diclofenac was applied to one knee in a randomised and double blind trial [3], the concentration of diclofenac in the untreated knee was almost the same as that in the treated knee.
However, concentrations of NSAID in tissue, particularly meniscus and cartilage, were very much higher after topical than oral administration, indicating that direct absorption through the skin into tissues of the joint does occur.
Quote from: bluth on April 20, 2009, 07:11:52 AM
Is there any better study out yet detailing the positive effects of Pentox except the one from Dr. Lue with one patient?
I am seeing a urologist soon and last time that study didn't help in getting any Pentox (which I now get online instead).
https://www.peyroniesforum.net/index.php/topic,772.0.html
Quote from: Iceman on April 19, 2009, 10:38:46 PM
germike - are you saying that youve had no noticeable benefit from pentox - even pain reduction??
Unfortunately this is exactly the case for me. My condition gets worse every month. New nodules form. I even suspect that the combination of Pentox and strong erections is not good because I found new problems nearly everytime after such occurrence.
My doctor told me today that i am in the beginning stages of Peyronies. The bending affect is only noticeable when semi erect or weak erection. He took me off vitamin E 400 units two times a day and put my on a colchinine .6 mg 3 times a day, along with a mutilvitamin that contains 60 u that i take once a day. He said this is a "minor" case. He mentioned something about adding on IB profen or motrin along with the cochicine? Has anyone heard of this. Should i continue to take the vitamin E. Any comments about the colchicine and motrin in early stages?
The document linked below is pretty much the gold standard reference for Peyronie's as far as I am concerned:
Number One Best Peyronie's FAQ (http://knol.google.com/k/tom-lue/peyronies-disease-acquired-deformity-of/YjC9Puq6/B9bMvg#)
EVERYONE should read it through before asking questions here, it will answer a LOT of your questions. - George
George - It certainly is. Any urologist out of the loop, should certainly come around to thinking that trental is a viable option after viewing that document.
Newguy:
To many doctors don't examine the new evidence they only go off what they were taught in medical school, this is a problem in the medical community.
Germike:
It is premature to conclude pentox is making your condition worse, it could be just getting worse on its own, even if you were off pentox. Do you have doppler ultra sounds to track progression? Are you taking anything else? Are you having sex? etc. etc. etc.
Comebackid
Quote from: newguy on April 19, 2009, 04:03:44 PM
Dan - I bought mine from http://www.inhousepharmacy.co.uk . It's not on the main site, but if you email them, they can get it for you. I keep emailing concerning actually placing on the site for the sake of convenience, but they haven't exactly proved to be speedy regarding this request.
Quote from: Nemo on April 19, 2009, 06:08:12 PM
Dan, I've oredered Pentox (Trental) several times from mexmeds4you.com, a Mexican online pharmacy. I've found them to be reliable and legit.
Nemo
Thanks guys
Quote from: ComeBacKid on April 20, 2009, 11:22:05 PM
It is premature to conclude pentox is making your condition worse, it could be just getting worse on its own, even if you were off pentox. Do you have doppler ultra sounds to track progression? Are you taking anything else? Are you having sex? etc. etc. etc.
Yes I think it gets worse without pentox too. Pentox just doesnt seem to help. What I currently take is already posted some days ago. I'm afraid of having sex due to very weak vulnerable erections. One time when I made it myself 2 days later new nodules formed. I detected 2 new nodules in healthy area that grew over 2 weeks to full size. I make fotos of my penis once a month and can see the progression but its easy to feel how it gets smaller in the healthy places.
I wonder about the Potaba I take for years whether it could make my condition progressive. The theory in my mind for this is, that when plaque is slowly resolved it gets leaky and when strong erections press new blood between the tunica it can reach new areas and so the plaque grows. So maybe its better for stabilization to just let the plaque growth to make it leakproof in a way that leaked blood cant get behind the plaque. The leaked blood in my opinion comes from ruptured vessels. Thats the idea I have of peyronies. Vessels rupture and blood leaks into trapped spaces which cannot easily removed/cleaned. What potaba clearly did for me is that I never had a big curvature compared to others. I'm sure I would have it but instead the penis just shrinks overall with some hardening of the tunica tissue and weaker erections. With potaba I never had pain when erected. Though I have burning pain in flaccid state.
gerMike - I'm sorry to here about this. Maybe pentox helps more than you think, or is just very slow at kicking in, or possibly doesn't help some people. We're all difficult and reactions to treatment methods also differ wildy, which is one of the most infuriating things about this disease.
I'll rack this up as a theory... and put it out to the folks on this board.
I imagine that where fibrotic build-up for Peyronie's disease occurs, it is possible that Fibrosis is occurring in other parts of the body as well. Be it the heart, the liver, in one's vascularity in general it is possible that Pentox has to break through general fibrosis in the body. I imagine that once the body gets past this, then more pronounced effects may be viewed in the penis.
I am not on Pentox, and I am certain that I will start the regiment soon. My neutriceuticals are nice and all, but many of the preferred ones need to be taken on an empty stomach and well... I don't like timing my meals. I like the fact that Pentox is a full-stomach type of drug... I imagine I will take it at 5:00 am, 1:00pm and then again at 9:00pm. I'll eat a couple of zone bars with 5:00 and 9:00 does.
It seems like a regiment of VED, Pentox and possibly heat-application to the scar would be a good way to enhance localized blood flow and enhance the effect of Pentox.
Just my theories based on cases I have heard about in which people took anti-fibrotic medicine and then had nothing for a while and suddenly started noticing change.
I hope this is helpful.
Ted Williams...
Interesting theories, Ted.
I am not sure about the first theory - that when you have a lot of fibrosis, that the pentox is busy everywhere and there is not enough biologically available for the penis - or that it works better when it is done everywhere else. That is an intriguing thought though.
I am starting to be more convinced that glycation and advanced glycation end-products ("AGE" products) may make the work much harder for the pentox to do. No data about Peyronie's (although George has made progress on his disease with an anti-glycation diet alone, and then done much better when done in concert with Pentox).
So it may definitely be a tipping the scales kind of thing at some level.
Tim
Quote from: Tim468 on April 22, 2009, 04:06:20 PM
I am starting to be more convinced that glycation and advanced glycation end-products ("AGE" products) may make the work much harder for the pentox to do. No data about Peyronie's (although George has made progress on his disease with an anti-glycation diet alone, and then done much better when done in concert with Pentox).
This post may prove to be of help to the new folks here: https://www.peyroniesforum.net/index.php/topic,22.msg14252/topicseen.html#msg14252
Hi, guys. I am new to this disease...and, a new member to this forum.
I appreciate the open discussion and the information I have gathered from the site in a very short time. Thanks!
I will tell my story below for those who have the time and/or inclination to read it. But, I do have a question so I will post it first: I see a lot of discussion about two drugs: Potaba and Pentox. I just started an aggressive regiment of Potaba (I have been on the drug for one week with no side-effects). From what I understand, the difference between the two drugs is this:
Potaba: expensive, severe side-effects, inconvenient (must crush pills and take w/ juice on a full stomach).
Pentox: affordable, generally limited or no side-effects, convenient (two pills x twice daily on an empty stomach).
Question: Is there any research that shows which drug is more effective fighting the plaque? Or, is it simply a matter of which drug your urologist prefers or whether a patient can tolerate Potaba?
Thanks for being here! JackieO
Here is my story:
I am 57 years old. I am a retired architect living in Seattle, WA.
My retirement began 1/1/08. At that time, we took off to Hawaii. In mid-February '08, I tore my Achilles tendon playing tennis and had emergency surgery. (This preface may or may not all be related...see "my story"). In Mid-November '08 I started to notice a curvature in my erection (to the left). Because of the lack of medical professionals on the Big Island I sought-out an on-line medical consultation site. This is what I wrote:
I am a 56-year old male. I have recently noticed that my erect penis is hooking to the left and the head is not as full as it has been in the past. In fact my erection, overall, is shorter. I have noticed this over a relatively short period of time. Do you have a diagnosis? I am thinking it might be an indication of an arterial circulation problem.
The reply was basically two words: Peyronie's Disease
I found information on the Internet but I was stymied by the fact that everything seemed to point to a "trauma"....an incident. I could not think of a single incident. (I have since read that there are other factors which, in my case, may be at play.)
When I returned from Hawaii this year (3/09) I scheduled appointments with my General Physician, an Orthopedic Surgeon, and a Urologist (Specialist in Peyronie's Disease). The Peyronie's was confirmed and I was told by the urologist that he does not believe the plaque has stabilized. He prescribed an aggressive regiment of Potaba (6 pills (500 mg) x twice daily)). I have been on the drug for 1 week with no side-effects. I am also taking L-Arginine, Nattokinase, Bromelain, and Gotu Kola. I have changed my diet and I have continued my exercise routine.... But, I am only 1-week into this "new life" and I am totally consumed by it.
The specific issues at play for me are 1). In the mid-90's I had a testicular-cancer biopsy. My testicles were removed through an incision in my abdomen and slices were taken off the outer edges (like shaving an orange). The specialist said it was an unusual case and the lab reported the lumps were benign fibrous tumors. (Does that put me in a higher risk group for fibrosis?) 2). I had an EBT Heart-scan. My score was 34. Basically I have only "trace" heart plaque. 3). During my Achilles tendon surgery I was lying on my stomach on the steel operatory table. I was under complete anesthesia. The new orthopedic surgeon told me that men can cycle through erections while under anesthesia. We hypothesized that I could have been lying with my weight on my penis (while bent) or my penis could have been tangled in the hospital gown while experiencing an erection. Either scenario could have been the "incident" that caused the trauma to my penis. The first time I noticed the "bend" was 8-months after my surgery. Both my orthopedic surgeon and my urologist said this is a topic for study. In fact, my urologist said, "I usually pooh-pooh patients' home analyses. But, this makes a lot of sense and, quite frankly, there is not a lot of concern given to a man's penis during general surgical procedures".
Sorry if I should have entered "my story" under a separate heading....this is my first blog posting....ever. JackieO ???
Read my post below and follow the link to Peyronie's FAQ. - George
Jackieo,
Here is that link again Peyronie's FAQ (http://knol.google.com/k/tom-lue/peyronies-disease-acquired-deformity-of/YjC9Puq6/B9bMvg#).
I think you are taking what would be considered a light Potaba dose. Pentox is very different than potaba and I think an overwhelmingly preferred drug in the eyes of most men here.
George and Hawk:
Thank you for your responses. It is good to know that my current dosage of Potaba is considered in the low range. I called my urologist today to review my reaction to the Potaba (zero) and to ask if he wanted to up the dosage. (He is out of town until Monday....)
I will pass on what you said and ask if he is familiar with Pentox. I will also research the FAQ. Thanks!
JackieO
When I first saw my urologist, whom I have gotten to have faith in, I asked him why he didn't prescribe either potaba or topical verapamil. His answer was "because neither of them work." I think most of the members here would agree with that.
JackieO
You may have been catheterized during the procdure (probably you were) and that alone has been connected to the development of Peyronie's Disease.
We always speculate here, but no data suggests that the fibrotic changes to the testicle might affect you elsewhere. Might be, though. I assume that after the testicles were "removed" they were put back in place, no? I am also confused - it seems a more direct way to deal with a testicle is to pull it out of the scrotum, not the belly. Did I miss something there? If you mean to say that your testes were exteriorized during a procedure and then gently put back in place, then I think that the risk of that being related to the development of PEyronie's is about the same as the orthopedic procedure. IOW, who knows? Might be...
OTOH if the testes were removed and you are on testosterone replacement, then the levels of testosterone may affect your tendency to fibrose in the penis. Given the complicated history you might want to check you T levels anyway.
Welcome!
Tim
Just curious, have others tested high for homocysteine?
s&s
Tim: Thanks for your thoughts.
I was not catheterized during my procedure. Responding to your question, the testicles drop down a tube into the scrotum prior to birth (I don't remember the technical terms). My tubes were still clear at the time of the procedure so the Dr. took the testicles up the tubes and extracted them through an incision in my abdomen. This was done to aid healing vs. having both a scrotum scar and wounded testicles. All testing was benign. The testicles were replaced (gently, I hope :'()...and I have had only yearly check-ups with my GP since. I am not on any testosterone replacement (nor was I after the procedure). Everything was/is in working order....it was a complicated biopsy. Can you expand on having my T levels checked. Are you referring to either thyroid or "T" cells? All good information...thanks!
https://www.peyroniesforum.net/index.php/topic,22.msg19412.html#msg19412
Any thoughts on that post? Positive or negative, all views are welcome :). If it is as effective, then I would think that it'd be a safer alternative for people, less chance of adverse effects etc. For those in the UK, you can pick it up from Sainsburys: http://www.sainsburys.com/groceries/shopping/details/product_detail.jsp?bmUID=1240491708153
QuotePentoxifylline and vitamin E promote regression of radiation-induced fibrosis
NEW YORK (Reuters Health) - Treatment with combined pentoxifylline and alpha-tocopherol can cause regression of radiation-induced fibrosis, but long-term therapy is needed to sustain benefits, researchers report in the Journal of Clinical Oncology.
"When radiation comes in contact with tissue, any type of tissue, you get fibrosis, and years later, you can also get necrosis," noted Dr. Sylvie Delanian in comments to Reuters Health. "Most medical doctors considered this irreversible, but we showed that this therapy works. We showed that some of these complications can be reduced," she said.
To determine the maximum response and the time taken to achieve response with the combination of pentoxifylline and vitamin E, Dr. Delanian from Hopital Saint-Louis, in Paris, France, and her colleagues conducted a retrospective study of 44 women with 55 distinct fibrotic lesions induced by radiation therapy for breast cancer.
The patients received the combination therapy twice daily for either 6 to 12 months (short treatment) or 24 to 48 months (long treatment), after which the reduction in the size of the fibrotic region and in the global score of late injury was measured.
The investigators found that the short- and long-term treatment regimens significantly improved both outcome measures. "Lesions were reduced by half after 6 months and by two thirds after 1 year," Dr. Delanian said.
The regimen was also well tolerated. "No patient stopped the treatment because of an adverse event." But when the treatment was stopped, the lesions returned. "We need long-term treatment, of 2 to 3 years," Dr. Delanian said.
The researcher noted that although the paper focuses on lesions of the breast, the treatment is devised to treat all sorts of fibrosis.
http://www.oncolink.com/resources/article.cfm?c=3&s=8&ss=23&id=12725&month=01&year=2006
This study is not new, but is new to me at least. I did a search, but if it has been posted elsewhere feel free to remove it.
I am basically posting this because some people appear to be getting downhearted about their treatment, and consider quitting supplements etc. The above study does not relate to peyronies, but is surely a good example of how some treatments really do take a long time to show benefits and to retain them. With peyronies I would think that often much damage is done previous to the use of supplements , but as it's such a gradual disease people come to believe that nothing is working for them, when in fact it may be more useful than they realise.
All you can do is use the tools at your disposal, try to develop a long term view and hope for the best in terms of natural improvements and those improvements brought on my your own determination (VED, supps, exercise, eating well) . We all get downhearted at times, sometimes very much so, but it's important to try to hit this from as many angles as possible and not let short term negative changes, alter your approach.
I absolutely agree with newguy on the long term treatment approach. With Peyronie's NOTHING is going to turn things around within a short time frame. This is why it is important to follow the broad based research dealing with autoimmune and fibrotic syndromes and lock on to those with the most promise. That is also why it is important to note methods that people are getting results with over a long term period. If you are too short term in your mentality, you will be jumping from one thing to another and will not be getting any significant benefit. And you will be increasingly unhappy with the trend. Things like Pentox, Potaba, Vitamin E are tried and true. They are pretty much known to work. Things like Vitamin D are up and coming with a lot of smoking gun links to auto immune processes. The VED is widely used around here by people who can vouch for its benefits. And then of course there are healthy diet focusing on REAL food that hasn't been refined or processed, and plenty of healthy exercise. I could go on, but you all get the idea. My advice is to major on the things with the MOST LIKELYHOOD of succeeding over the LONG TERM, because there is NOTHING out there that is effective over the short term and NOTHING out there with any significant amount of research behind it identifying it as being beneficial specifically for Peyronie's. - George
My reference was to Testosterone levels, along with sex hormone binding globulin and estradiol (at the very elast).
Tim
Tim:
Thank you for the reply. I will have my 'T' (Testosterone), sex hormone binding globulin, and estradiol levels checked at my next blood test. It makes sense...although I did need to look-up "estradiol" on-line.
And, nicely done on your note to didi. I am 56 and new to this disease. I appreciate the 'frustration' didi is going through...I am there too. I found your note very uplifting.
JackieO
I have been exercising lately, and wanting to start taking some NO2 product to get bigger. (the most heavily advertised one that I see is NO Xplode, though I'm not sure if it's the best) http://www.bodybuilding.com/store/bsn/xplode.html
Almost all of these have caffeine in them, but they also have other agents that supposedly help with vascularity. For one, I notice this one has L-Arginine and other AAs in it. Also something called Rutaecarpine which they claim "helps to counter the vaso-constricting effects caused by caffeine consumption".
I'm wondering what some of the science heads here think about the possible impact this could have on Peyronie's plaque. I'd like to take this stuff, and I'm wondering if the other ingredients would possibly counteract any of the bad that the caffeine does.
Hey, calling all experts...
I've seen a lot of us are using ALC, so, I thought maybe I should too.
Currently, I'm taking Vit E (400 - 800 mg per day) and L-Arginine (2g per day).
I saw ALC at GNC, but I also found it at iHerb
http://www.iherb.com/Acetyl-L-Carnitine-Alpha-Lipoic-Acid
Since I don't appreciate the differences in ALC, what should I get, if any???
thanks in advance...
p.s. I have a uro appt in about a week and a half with a doctor at Emory University who has prescribed pentox for Peyronies Disease; from what I'm told by a fellow board member; so, I may be adding Pentox to my intake.
CF
Cowboy:
My partner did some research and came up with the following ALC for me:
Twinlab Acetyl L-Carnitine/ 500 mg
I take two capsule daily: 1000 mg.
We found L-Carnitine as well as Acetyl L-Carnitine. You want to get the Acetyl, as you noted.
Sorry, I don't know the specifics between the two types.
JackieO
I take 2g/day of ALC to match the dose used in the Peyronie's study. I use the NOW powder (http://www.iherb.com/Now-Foods-Acetyl-L-Carnitine-3-oz-85-g/373?at=0). I don't think it matters much which brand you use. The taste is not great; if you have sensitive taste buds, you might want to go with capsules.
s&s
Quote from: jackisback on April 27, 2009, 12:05:47 AM
...wanting to start taking some NO2 product to get bigger. Almost all of these have caffeine in them, but they also have other agents that supposedly help with vascularity.
I am sure caffeine is a vaso-constrictor rather than a dilator so I would avoid it.
I am open to any ideas. I am currently taking .6 mg colchicine three times a day, and vitamin E 400 u two times a day. I have been told I should add a topical IBprofen. By doctor also mentioned i should add IBprofen but neither source mentioned how much for Peyronies Disease? Also is their anything else i could add that wont hurt? Thanks for any help...the VED is not an option at this point. Please just oral medicines.
S+S, Thanks for weighing in on the ALC.
I agree with you about the taste.... I take ALC in capsule form but I also take 3 grams of L-Arginine powder (also by NOW Sports)...and, it tastes terrible!
I mix it in a Bullet-Blender with juice. I think the taste of the L-Arginine makes Potaba taste like a "treat".
I previously told Cowboy I didn't know the difference between Acetyl L-Carnitine vs. L-Carnitine. I found this clarification:
Pharmacology: When acetyl groups are bound to certain other organic molecules, they impart an increased ability to cross the blood-brain barrier. This makes the drug reach the brain more quickly, making the drug's effects more intense and increasing the effectiveness of a given dose.
JackieO
jackio and cowboy....What herbals/vitamins/oral meds have you tried so far? And what are you currently taking? Have you tried Colchicine/vitamin/ibprofen combo? Or any of them? Have you seen results from any oral treatment so far?
Starting2looseHope: Please Don't!
I was only diagnosed w/ Peyronies Disease two-to-three weeks ago. I did a self-diagnosis back in December but I was not in a place where I could schedule a Uro appointment until recently. My Uro prescribed Potaba for me. I take 6-500mg pills (crushed) twice daily. He also agreed that a daily dose of Cialis (or, in my case a half-daily dose) is good for nighttime erections (...blood flow). I have only been on Potaba for 2 weeks. I have a preliminary follow-up appointment in 4 weeks. My mindset?...I don't anticipate seeing any change in 6-weeks time. Here is my daily drug + supplement routine:
Potaba 6-500mg x twice daily
On my own I added the following:
Vit E 400 IU to 800 IU Daily
Vit K 400 mcg (for blood-thinning caused by Vit E)
Vit D 2 x 2,000 IU ea.
Amino-Acids:
L-Arginine 6 mg
Acetyl L-Cartinine 1000mg
Herbal Supplements (...?):
Nattokinase 100 mg
Gromelain 500 mg
Gotu Kola 200 mg
...plus exercise. I also ordered a VED from Fitzz and have come to believe this will be instrumental in the physical reduction of my left-hand hook. From what other contributors have recommended I understand it is good to treat the disease from both the internal and the external. (Thanks for all the input, guys!).
I hope this helps. If you have any questions....send me a note.
Jackieo
S2LH,
I'm on a similar plan as Jackieo, minus the Vit K, D, and ALC.
but, I'm adding those. I too, ordered the ved from Fitzz.
Significant changes? I think my physical condition looks about the same as it did since I noticed it back in December 2008; which, I'm considering a good thing.
I'm overcoming some mental issues caused by the Peyronies Disease, which are related to situational ed type stuff...for the first time, ever, I didn't think about sex or getting "excited." I felt numb...but, I've decided to become proactive, not just about Peyronies Disease, but about my health in general.
I'm at an age, 46, when one's sexual responses can start to react to the wear and tear of father time...Admission time, I don't drink and I don't smoke.....I don't do any type of narcotic, etc....except, I've had this awful addiction to smokeless tobacco...and I'm quitting that...I know that smokeless tobacco does no good, in fact harms, many of the issues people deal with on this board.
I might not have ever decided to quit until now. This is a blessing.
CF
I'm really happy that a lot of the new members here are trying to get on top of their condition early on and doing everything in their power to control. it. It's testament to the efforts of longstanding members here that people are able to effectively "plug in" to a treatment approach. Is it perfect? No, but it's the best approach we have right now and is likely be beneficial.
Quote from: slowandsteady on April 22, 2009, 10:27:29 PM
Just curious, have others tested high for homocysteine?
Bump. No one here has had their homocysteine levels measured? I read this in an interview here (http://forum.lowcarber.org/archive/index.php/t-54420):
QuoteAlso, homocysteine stimulates growth of smooth muscle cells, causing deposition of extracellular matrix and collagen, which causes a thickening and hardening of artery walls.
Mine is on the higher end of the scale (over 13 umol/l).
s&s
Edit: that interview really is a fascinating read. Another quote: "In 1976 they showed that patients with coronary heart disease had a higher elevation of homocysteine in their blood following an oral dose of methionine, compared with controls without coronary heart disease." I noticed more Peyronie's pain after taking methionine.
slowandsteady: Good Question (homocysteine).
Homocysteine level? That was a new word to me! I did some reading (thanks for the link) and I talked to my partner who had a bad EBT (heart scan) this past year and has become a member/contributor to a web forum similar to "ours". The forum is called Track-your-plaque.
This article came my way: http://www.trackyourplaque.com/library/fl_01-006homocysteine.asp
I had recent blood work done so I am going to e-mail my GP to see if he has any notes on my homocysteine level.
Jackieo
Quote from: Jackieo on May 01, 2009, 05:18:31 PM
slowandsteady: Good Question (homocysteine).
Homocysteine level? That was a new word to me! I did some reading (thanks for the link) and I talked to my partner who had a bad EBT (heart scan) this past year and has become a member/contributor to a web forum similar to "ours". The forum is called Track-your-plaque.
Hi Jackieo. I'd be interested in hearing your levels. I'm not a member of the forum, although I do read the blog regularly. I can't get the full text of the article you cited, but I did notice this on the first page:
QuoteHomocysteine increases levels of asymmetric dimethylarginine, the natural blocker of l-arginine and nitric oxide, natural dilators of arteries. This causes abnormal arterial constriction and injury.
As we know, l-arginine is often recommended for Peyronies Disease.
I have to wonder whether an absence of global CVD reduction when homocysteine was lowered via B vitamin supplementation comes down to the folate source used. Folic acid is not well metabolized by some people. When those people take high dose folic acid, not all of it is metabolized to methylfolate, and it remains in the blood where it might be doing harm. If methylfolate were taken (or folinic acid), apparently the rate limiting conversion is bypassed. See the LEF article here (http://www.lef.org/magazine/mag2006/oct2006_cover_homocysteine_02.htm).
Dr. Davis is also on the board of LEF, but apparently he doesn't see eye-to-eye with William Faloon on this issue.
s&s
I am 22...my current routine is colchicine/vitamin E....Would it be safe to take this medicine routine at my age? I would be taking
Vitamin E 400-800 IU
Vitamin K 400 MCG
Vitamin D 2 x 2000 IU ea
Colchicine .6 3x a day
L-arginin 6 mg
ACL 1000 mg
Basically Jackio's routine...Also should i take an all purpose Vitamin like Centrum Advanced on top of this...it contains 400IU of Vitamin D, 60IU of Vitamin E, and 25mcg of Vitamin K.
I feel like everyday i am loosing hope for the future......I can NOT wait to find a doctor knows what he is doing and enjoys helping patients......I already know my doctor will say this is not safe...he actually told me to stop taking vitamin E and just strictly take colchicine......
Attention all newcomers ... PLEASE READ THE FOLLOWING BEFORE ASKING QUESTIONS ABOUT PRESCRIPTION MEDS FOR PEYRONIES. The author does a great job of bringing newcomers up to speed on all the ins and outs of Peyronie's INCLUDING the various available prescription medications and his assessment of their relative effectiveness. PLEASE take advantage of this resource AND THEN you will get a lot more satisfaction out of the content on this forum. - George
Quote from: Hawk on April 22, 2009, 07:36:42 PM
Here is that link again Peyronie's FAQ (http://knol.google.com/k/tom-lue/peyronies-disease-acquired-deformity-of/YjC9Puq6/B9bMvg#).
Starting2looseHope - Get on pentox (trental) too if possible. You seem to have just about everything else covered. Make sure that your diet is good, and try to exercise too, and this may help a little, and also may lift your mood a tad. It seems like it's still very early days for you, so it's hard to tell how this will pan out. If your doctor isn't very helpful, at least you are in part rectifying that by being proactive yourself. Hang in there.
Starting2: I understand your frustration with all of this. I am feeling the same...daily.
I am not a doctor or a nutritionist...far from it. In my case, I felt I had to do more than take 12 pills a day and wait, as prescribed by my Uro. (It might be important to him to know which drug is being effective in my treatment. But, I just want results.)
The generally accepted drug treatment for the men on this forum is either Potaba or Pentox. I don't know what colchicine is.
I don't know where you live...is it possible to search for a second opinion? Certainly, others on this forum can help you with a recommendation of someone in your area. I think it is important to print some of the data from this site and take it with you to your next appointment.
In my opinion, there are different levels of attaching this disease. The first level is primary drugs:
Pentox, Potaba, (maybe colchicine?), and Vitamin E (my Uro did not prescribe Vit E, which I think is either strange or an over-sight. I think there is a danger in Vit E. overdose so I usually only take 400 to 800 IU daily.)
Second to this, I rationalize you need to help your body in accepting the first line drugs: I added Vit K 400 mcg (for blood-thinning caused by Vit E), Vit D 2 x 2,000 IU ea., and the Amino-Acids: L-Arginine 6 mg, and Acetyl L-Carnitine 1000mg
Last, to appease my herbalist friends, I add a few supplements (noted on previous post).
...and exercise, VED 26-week therapy, and cialis (a "small" daily dose). (I think this is all about blood flow!)
Note: I dropped taking my daily multiple vitamin, Centrum Silver. Given the different varieties of base vitamins (E for example) I decided to take the best individual vitamins for my treatment and avoid mixing-and-matching.
So, I am hoping "others" will pitch-in on this recommendation (I know there are "smart" contributors out there!).
The important issue is taking the correct "type" of each vitamin. These have been noted on the forum numerous times. However, if you want a list of what and where I purchase mine just send me a personal note. Hang in there.... I am only into this treatment 2 weeks now. And, whether I like it or not.....It appears I have, in all likelihood, 12 to 18 months to see if it is successful in providing any change. At least I am at ease with what I have designed as a course of action.
JackieO
I question whether most of the members of this forum who have tried potaba would agree with your endorsing that drug. Besides being expensive, difficult to digest, and too many pills to take, very few would agree that it does any good at all!
Mick: I hear you loud and clear. I have only been on Potaba for two weeks.
Last week (after spending many hours reading on this forum) I called my Uro and asked if he wanted to either "up" my Potaba dosage (most men on Potaba take up to 24 pills daily) or switch to Pentox. He said he does not prescribe Pentox. I have a follow-up appointment in a few weeks with him. And, in the meantime, I am shopping for a second opinion.
I appreciate your comments.
JackieO
JackieO - I wonder why so many uros are against prescribing pentox, and leave patients either without, or scrambling to find an online supply. There is, in my view, sufficient information out there to demonstrate that pentox is a viable drug to prescribe for peyronie's.
From Dr. Levine's survey:
QuotePercent of PCP & Urologists that do not feel Peyronies Disease usually warrants treatment 21% & 29%.
That is treatment of ANY kind. That coupled with the limited information on Pentox in treatment of Peyronies Disease and the fact that it is "off label" kind of make it clear why most do not prescribe it.
ng + H: Thanks for your thoughts re: Pentox.
I do plan on "fighting the fight" for Pentox vs. Potaba. I have a list of questions for my GP. His practice is known in the Pacific NW for its exceptional treatment of HIV-Aids cases so that tells me he is very "mentally open". This might just be an eye-opener for him. I think the two of us can come up with an alternate Uro for me to see. Hopefully, that person will be educated in the Potaba vs. Pentox debate.
Regardless, the back-up I have garnered and printed from this site will show him what-is-what.
I will be gone for a week but I will post as soon as I can see him.
JackieO
p.s. For anyone currently on Potaba: I have nothing against Potaba. I have had no reaction to the drug...but, I only take 6-pills twice daily. Typically, on this site, men tell me they take 24-pills daily. I have many thoughts on this: Is my "half-dose" sufficient to force a change?....Am I a more likely candidate for Pentox?....etc? Who the F___ knows? Eighteen months is a long time to live in doubt!!!
Long time reader, first time poster.
Has anyone tried Xtend-Life's products such as their Total Balance?
http://www.xtend-life.com/product/Total_Balance_Men's_Premium/Introduction.aspx
The ingredients list shows several of the things people on this forum have tried, but in much smaller quantities. Their strategy seems to be a synergistic effect, where multiple ingredients put together create a greater effect than the sum of their parts.
I also like how their chairmen writes to a blog on the site, giving very useful articles on supplements and health.
http://blog.xtend-life.com/warren_matthews_blog/2009/4/17/omega-3-fish-oils-how-do-you-really-select-the-best.html
I have tried their products in the past, but never nearly at full dose because of cost. With my condition seeming to get worse, I was thinking of trying again and was wondering if anyone has tried them before.
Does anyone still take N-Acetyl-L-Cysteine, or is it now perhaps not seen to be as effective as some of the other supplements we're taking?
ALSO:
Benfotiamine (B1)
L-carnosine
Pyridoxine (B6)
1) As these three have been discussed occasionally, and in my view may work well alongside pentox, does anyone have an vague idea, or word from others of a recommended dosage in order to best bring about AGE inhibition? Diabetics no doubt use these same supplements due to blood sugar issues, so I suppose that could be a useful point of reference.
2) Is there a very significant difference between taking Vitamin B1 and B6 tablets, than hunting down these named products, (Benotiamine and Pyridoxine) which I assume are fat soluble or have different availability within the body?
Quote from: newguy on May 04, 2009, 05:32:10 AM
Does anyone still take N-Acetyl-L-Cysteine, or is it now perhaps not seen to be as effective as some of the other supplements we're taking?
ALSO:
Benfotiamine (B1)
L-carnosine
Pyridoxine (B6)
1) As these three have been discussed occasionally, and in my view may work well alongside pentox, does anyone have an vague idea, or word from others of a recommended dosage in order to best bring about AGE inhibition? Diabetics no doubt use these same supplements due to blood sugar issues, so I suppose that could be a useful point of reference.
2) Is there a very significant difference between taking Vitamin B1 and B6 tablets, than hunting down these named products, (Benotiamine and Pyridoxine) which I assume are fat soluble or have different availability within the body?
All of the above are indeed useful and I have used them in the past. The problem is that if you take everything that is useful, you will be taking huge numbers of pills. And the degree of benefit you will get from everything put together is very slight. So it is probably more practical to concentrate on those things that offer superior effectiveness. Additionally, the B vitamins do carry some potential cancer risk when taken in large amount. Of the above, I still find it useful to take Carnosine occasionally. The others, I have around, but have not taken for a long time and don't plan to take regularly in the future. When it comes to the whole AGE question, AGE's are really a byproduct of what is going on and not so much a cause in and of themselves. The real benefit will come when we have access to something like Alagebrium which is capable of actually eradicating AGE's to some degree and not just partially blocking the formation of new ones. That is really what we need in this department. We can much more effectively block the creation of new AGE's with anti-inflammatories like Pentox than with AGE blockers like Carnosine. Now if something like Alagebrium comes along which can actually knock out existing AGE's, then that will be very attractive. NAC is a whole other animal. NAC is recommended to use with ALC as the two are supposed to be synergistic. The question again, though, is whether it is useful enough to be practical, or whether it is just another of a million pills a day. Taking an excessive number of pills, however beneficial, also brings risk and we have to weigh these two factors. That is one reason why I have backed off on a lot of things I was previously taking. - George
Thanks for the reply George. I was having similiar thoughts myself. It makes sense to add new vitamins and supplements to an oral arsenal, but it's easy to find yourself with what amount to a home pharmacy/health store and a rattling belly. Beyond a point I'm sure that the interactions betweem the various supplements becomes complex and maybe counterproductive. I take when it considered the tried and tested mix: Pentox, L-arginine, Viagra and added Vitamine D, E and ALC into the mix, as well as a multi vitamin. Maybe adding a general strength vitamin B complex would be a decent addition, rather than taking high amounts of specific B vitamins. I'll give it some thought.
STLH: Thanks for the personal note. I believe several items you questioned are worthy of posting on the General Board. I am leaving town tomorrow but will try to get a list posted later today detailing where I buy the best quality (recommended) vitamins and supplements, per your request...I think they are all available on the web from iherb.com. I will post the list on the General Board (under the Oral Heading) so "others" can comment.
Per our discussion:
1. Re: "stimulation", this is my understanding (I am posting it on the General Board to give everyone the opportunity to correct my statement....if I am wrong). If you have any inflammation at your penis you should abstain from stimulation. In no case should you ever "massage" the point of inflammation (plaque). Once the inflammation is gone you can resume regular sexual activity and the use of a VED and/or traction device. Keep in mind, given the nature of our disease you should be using a water-based lubricant for all sexual activity.
2. Re: Multiple ejaculations/ Viagra: The point of using a daily-dose of Viagra or Cialis is not to provide you with more staying power (more ejaculations) but to give you an erection that is hard enough to avoid further (bending) damage. And, the daily-dose provides nocturnal erections (for many men) that provides additional stretching w/o feeling the need to "get off". Obviously, if you remain "hard" after ejaculation and have the staying-power to entertain a second or third "round"....more power to you!
I hope this helps. Keep-up with the postings as someone might post additional information or an altogether different point of view.
...without a doubt, discuss all of this with your Uro.
JackieO
Quote from: Starting2looseHope on May 05, 2009, 11:16:38 AM
Colchicine does seem like a waste of time...upsets my stomach also. I might stop taking it. To anyone who has seen Dr. Culley Carson of UNC CH. What is his main drug of choice when it comes to Peyronies? What treatment methods does he like. Is he up-to-date on a VED...I hope so.
Colchicine has the potential of more than a waste of time. The potential side effects can be nasty, almost comparable to some chemo treatments. They can include decreased white blood cell count and loss of hair. Couple this with an absence of any clinical evidence of effectiveness, and it has to make one wonder why doctors sometimes express concern that patients may take ALC or some other "unproven" treatment that has zero side effects.
In response to Jackieo's post regarding abstainence "if you have any inflammation at your penis" may be good advice, but my inflammation has a "mind of it's own". It occurs then goes away, then reoccurs from day to day, hour to hour. I've been having pain for 3 years now. It started off as what felt like a UTI then peaked during the second year and leveled off arond the end of the 2nd year. I still have inflmmation almost daily, but not as severe. This has SERIOUSLY impacted my sex life. So to say "once the inflammation is gone" in my case doesn't seem to apply, because after 3 years I still have some on an almost daily basis, although as I said i, it can come and go from one hour to the next. All my uro would prescribe was vitamin E. I'm also taking 2000m IU D3 per day. I have to go to my PCP for a physical soon and I plan on discussing pentox with him. He may prescribe it for me or know a uro who will. I'm a little skittish about ordering any drug from an online source.
Fred
I am with you on the coming-and-going of inflammation. I have found that I can pretty much cut it off with a healthy diet, exercise, and daily deep-pelvic (pubic area) massage. The pelvic massage is all about opening blood flow and helping to drain the lymphatic system. I recently read The Inflammation-Free Diet Plan by Monica Reinagel. It is copyright 2006. Basically, it is like the Healthy Heart Diet, and many others. But, this book gives an IF Rating to all foods. It shows you which foods spike inflammation and which foods fight against it. I eat a very healthy diet so I have not noticed a difference...except since starting the pelvic massage....no more hot-spots.
Good luck with your Doctor appointments.
JackieO
Hi there...
Quick quesiton, has anyone tried Hyaluronic Acid supplementation for Peyronie's? I'm thinking it could maybe help repair connective tissue that has been damaged by fluroquinolone antibiotics. I'm looking at two different products, the first is plain hyaluronic acid the second is Biocell Collagen Type II. I've been reading the forum and see that one theory is that Peyronie's is caused by fibrosis. Is an oral nutritional supplement providing type II collagen likely to increase the rate of fibrosis? If so this may contraindicate this type of supplement in fibrotic diseases. Any idea?
http://www.iherb.com/Jarrow-Formulas-Hyaluronic-Acid-50-mg-60-Capsules/2497?at=0
http://www.iherb.com/Doctor-s-Best-Best-Hyaluronic-Acid-with-Chondroitin-Sulfate-60-Capsules/4457?at=0
JustBob,
I have only one quick remark. fluroquinolone antibiotics are actually used to prevent fibrosis and scarring because they run interference with non-elastic type collagen production. That is also why prolonged use can cause tendon problems. I have no doubt that is a general rule but that some patients could have a non-typical reaction to these drugs.
Hawk
Strange that this subject should come up at this time. I was just researching hyaluronic acid on the internet a couple of days ago regarding an issue unrelated to Peyronies (I have mitral valve prolapse, which also involves a connective tissue problem and ran across some info about this supplement and it's possible effectiveness for treating MVP symptoms.). As I was reading about hyaluronic acid, It occured to me that it might also be helpful in treating Peyronies. I would like to hear from anyone who has any experience with this supplement.
On the subject of connective tissue problems; it seems that certain people have a genetic predisposition for these. I mentioned the MVP...I also have gout (which I think I'm pretty much controlling with diet, as I haven't had an outbreak in over a year). I also had inner ear surgery a few years ago after suddenly developing tinnitus, dizziness and nausea. I was diagnosed with " sudden sensorineural hearing loss". I've also read that this could in some way involve connective tissue issues.
Would be interested to see if anyone has any expereince with hyaluronic acid.
Fred
What's the preferred brand of Vitamin E? I've been using this CVS generic stuff and I highly doubt it is having any effect. I understand the best kind to get is the full spectrum?
What is the preferred brand of HGW to get? Where is the cheapest place to get SAN Vasoflow?
So the general idea of Colchicine is do not take it? The risk out way the benefits? Has anyone else on here taken colchicine and seen positive results? My Dr. appt with Dr. Culley (the specialist in Peyronies) is not till June 1st. Should i schedule another appt w/ a different doctor in the meantime do try to get on something else? Any advice?
richB
GNC is a quality brand and easy to find. Another good brand is Solgar, but more expensive and it's usually only found in health food stores. I first used Solgar, then switched to GNC. Could not tell the difference expect at the cash register.
Quote from: Attica! on May 08, 2009, 07:36:02 PM
richB
GNC is a quality brand and easy to find. Another good brand is Solgar, but more expensive and it's usually only found in health food stores. I first used Solgar, then switched to GNC. Could not tell the difference expect at the cash register.
richb,
From GNC, I've bought Vit E (Isomer label - most expensive), and GNC's ALC and L-Arginine.
But,
I found the following link posted by one of the board members earlier...I can't remember who posted it, but it looks like they have great deals and prices...I think I'll try it soon.
http://www.puritan.com/e-vitamins-103?left
CF
Thanks, that helps a lot. And as it turns out, a GNC was built in my hometown recently. :)
QuoteTuesday, April 7, 2009
Tufts University Confirms That Vitamin A Protects Against Vitamin D Toxicity by Curbing Excess Production of Vitamin K-Dependent Proteins
Tufts University confirmed my hypothesis that vitamin A protects against vitamin D's induction of renal calcification (kidney stones) by normalizing the production of vitamin K-dependent proteins in December, 2008, without citing my hypothesis or telling me they had confirmed it. I am, of course, very grateful that they thought it significant enough to investigate.
I first wrote about vitamin D's ability to protect against vitamin A toxicity in my article "Does Vitamin A Cause Osteoporosis?," published in the Winter 2005/Spring 2006 Wise Traditions, and first wrote about vitamin A's ability to protect against vitamin D toxicity in my Fall 2006 article in the same journal, "From Seafood to Sunshine." In a sidebar of that article, I suggested that "vitamin D produces toxicity by depleting the body of vitamin K" and that part of the mechanism by which vitamin A protects against vitamin D toxicity is by preventing the excessive production of vitamin K-dependent proteins, especially matrix Gla protein, also known as MGP: It may be, then, that an extreme imbalance between vitamins A and D leads to the synthesis of abnormally high amounts of MGP. If there is enough vitamin K to activate all of the MGP, it will help protect the soft tissues from calcification. If, instead, the vitamin K cannot keep up with the level of MGP being produced and the pool of vitamin K becomes depleted, soft tissue calcification ensues.
I further elaborated on this theory in my Spring, 2007 article "On the Trail of the Elusive X Factor: Vitamin K2 Revealed," published in Wise Traditions, and in my December, 2007 hypothesis paper "Vitamin D Toxicity Redefined: Vitamin K and the Molecular Mechanism," published in the peer-reviewed journal Medical Hypotheses.
That summer, when my hypothesis paper had been accepted but not yet published, I sent it to Drs. Xiang-Dong Wang and Heather Mernitz at Tufts University, who had just published a very interesting study showing the ability of an activated vitamin A derivative to protect against kidney stones caused by activated vitamin D without antagonizing its ability to protect against lung cancer. At the time, it looked like I was going to get into the program at Tufts and they were excited about carrying out an investigation with me of the vitamin K-dependent protein expression in the tissues preserved from their experiment. Things didn't work out at some level higher than the lab, so I never wound up being part of the Tufts program.
In 2008, Dr. Wang's laboratory apparently followed through on the investigation and collaborated with the laboratory of Dr. Sarah Booth, head of the biochemical and molecular nutrition program there and renowned vitamin K expert, to confirm my hypothesis. The resulting paper was pulished in the December, 2008 issue of the prestigious Journal of Nutrition.
In the two figures below, different letters above the bars indicate that the measurements represented by the bars are statistically significantly different from one another.
The above figure from the paper confirms the first part of the hypothesis: that vitamin D (the third bar) causes a large increase in the production of MGP in the kidney and that when vitamin A is added in combination with vitamin D (the fourth bar) it brings the production of this protein back down to normal.
If the production of vitamin K-dependent proteins such as MGP exceeds the capacity of the vitamin K pool or the enzyme that uses vitamin K, the vitamin K carboxylase, to activate them, these proteins will be produced in a defective state. At best, they will not protect against soft tissue calcification, and at worst, they could perhaps actively faciliate soft tissue calcification. The active form of MGP is called "carboyxlated MGP," while the defective form is called "undercarboxylated MGP."
In the above figure, part A shows the level of undercarboxylated, defective MGP; part B shows the level of carboxylated, active MPG; and part C shows the undercarboxylated-to-carboxylated MGP ratio, a lower ratio being better.
We can see a few important things here. First, activated vitamin D alone causes a marked increase in the defective form of MGP, and while activated vitamin A has no effect on the defective form alone, it brings the production of the defective form back down to normal when it is combined with activated vitamin D. Second, neither A nor D alone affect the production of the active form, but the two provided together synergistically increase the level of active MGP, which is what we want. Finally, we see that A improves the ratio all by itself, D dramatically worsens the ratio all by itself, and when the two vitamins are combined, they reduce the ratio with remarkable synergy.
Overall, then, we see that both vitamins are needed for optimal health. Vitamin A alone did nothing to benefit the kidneys or the lungs. Vitamin D alone caused a remarkable reduction in the ability of carcinogens associated with cigarette smoke to induce lung cancer but itself caused kidney stones. When vitamin A was combined with vitamin D, lung cancer was improved just as much, and the kidney calcification was completely eliminated. Moreover, the activation of vitamin K-dependent proteins in the kidney was much stronger with both vitamins than with neither treatment, suggesting that the vitamin A not only "antagonizes" vitamin D toxicity in the kidney, but that the two vitamins synergistically improve kidney health.
The authors made another interesting observation that I had not hypothesized: vitamins A and D appear to increase the turnover of vitamin K and the conversion of vitamin K1 to vitamin K2. In the D group, liver stores of K1 were reduced and kidney levels of MK-4, the form of vitamin K2 that animals synthesize, were increased. All A groups, whether the A was given alone or in combination with D, had reductions in both K1 and MK-4 levels. The authors referred to this as "antagonism" between vitamins A and K, but since vitamin A improved vitamin K-dependent activation of MGP, could it not be that the reduction in K1 was due to conversion of K1 to MK-4 and that the reduction in MK-4 was due to increased utilization and turnover of MK-4? The authors never suggested that vitamin D "antagonizes" vitamin K1, for example, even though its levels were reduced.
I have pointed out elsewhere that even modest amounts of vitamin D, whether provided by UV-light or in the diet, decrease liver stores of vitamin A; when the doses of D are larger, they decrease plasma levels of A as well. This suggests that vitamin D increases the need for and turnover of vitamin A. The data in the Tufts study suggest that vitamins D and A both increase the turnover of vitamin K2, but that vitamin A has a special effect of curbing the huge increase in the need for vitamin K2 in the kidney. Thus, vitamin A both calms the waves rocking the boat of vitamin D toxicity while helping to steer the ship at the same time, navigating the passengers to safety.
Is the theory that the fat-soluble vitamins "antagonize" one another rather than cooperate with one other ready to die the death it has long deserved? There is a reason, of course, that traditional diets and lifestyles provided all three of them together — because they cooperate with one another to support life, growth, and radiant health.
.[/b]
- http://blog.cholesterol-and-health.com/2009_04_01_archive.html
Thanks for slowandsteady for the link!! Very interesting findings. Of course we already knew that taking Vitamin K alongside D was a good idea, but this is a pretty strong indication that we should add vitamin A into the mix too, to maximise the plus points of D and minimise the drawbacks. Of course, solving one problem can cause another, and Vitamin A at high levels can sometimes cause problems too but this is often true of those with low vitamin D levels. I'm suggesting that a moderate intake of Vitamin A alongside K can work in combination to ensure that calcification is less of a worry.
Along similiar lines:
QuoteThe dose of vitamin D that some researchers recommend as optimally therapeutic exceeds that officially recognized as safe by a factor of two; it is therefore important to determine the precise mechanism by which excessive doses of vitamin D exert toxicity so that physicians and other health care practitioners may understand how to use optimally therapeutic doses of this vitamin without the risk of adverse effects. Although the toxicity of vitamin D has conventionally been attributed to its induction of hypercalcemia, animal studies show that the toxic endpoints observed in response to hypervitaminosis D such as anorexia, lethargy, growth retardation, bone resorption, soft tissue calcification, and death can be dissociated from the hypercalcemia that usually accompanies them, demanding that an alternative explanation for the mechanism of vitamin D toxicity be developed. The hypothesis presented in this paper proposes the novel understanding that vitamin D exerts toxicity by inducing a deficiency of vitamin K. According to this model, vitamin D increases the expression of proteins whose activation depends on vitamin K-mediated carboxylation; as the demand for carboxylation increases, the pool of vitamin K is depleted. Since vitamin K is essential to the nervous system and plays important roles in protecting against bone loss and calcification of the peripheral soft tissues, its deficiency results in the symptoms associated with hypervitaminosis D. This hypothesis is circumstantially supported by the observation that animals deficient in vitamin K or vitamin K-dependent proteins exhibit remarkable similarities to animals fed toxic doses of vitamin D, and the observation that vitamin D and the vitamin K-inhibitor Warfarin have similar toxicity profiles and exert toxicity synergistically when combined. The hypothesis further proposes that vitamin A protects against the toxicity of vitamin D by decreasing the expression of vitamin K-dependent proteins and thereby exerting a vitamin K-sparing effect. If animal experiments can confirm this hypothesis, the models by which the maximum safe dose is determined would need to be revised. Physicians and other health care practitioners would be able to treat patients with doses of vitamin D that possess greater therapeutic value than those currently being used while avoiding the risk of adverse effects by administering vitamin D together with vitamins A and K.
- http://linkinghub.elsevier.com/retrieve/pii/S0306987706007171
I think that vitamin A can block vitamin K and D to some extent which obviously isn't good, but maybe all of these factors provide us with some kind of idea of how the different vitamins interlink and that there are knock on effects of taking large amounts of any particular mineral. For those taking large amount of vitamin D I think there is certainly logic to upping their Vitamin A dose somewhat to take account of this increase. It's also worth noting that many negative effects of Vitamin A are only associated with low vitamin D intake (http://blog.cholesterol-and-health.com/2009/05/womens-health-initiative-confirms-that.html). The amount of Vitamin K we should be taking is perhaps the biggest mystery as there's little information out there relating to that. It seems to be that the prospect of taking high levels of vitamin D, without vitamin A, and possibly only a small amount of K (as we don't know how much of that you take) is possibly a risky endevour as it could encourage calcification. This is all complicated by findings that suggestion high levels of D and A deplete vitamin K and that Vitamin E may also do this. To me this just highlights of perils of taking mega doses of anything. There are just too many unknowns and knock on effects and it reaches a stage where we have no idea whether what we're doing benefits us or just creates a new set of problems. Thoughts?
newguy and slow and steady are making some really good contributions here. These take us to a level of discussion we haven't even really touched on before. It is has always been something of a mystery as to why levels of Vitamin D toxicity vary quite widely between individuals. Perhaps this theory offers the explanation to that. What is known is that Vitamin D toxicity is all but unknown as long as blood levels are kept below 100ng/ml. (This is NOT the case with vitamin D hypersensitivity which occurs due to the presence of a hidden para-thyroid issue.) As far as I know there is no known toxicity in the case of either Vitamin K or Beta Carotene which the body can readily convert to Vitamin A as needed. Thus my strategy thus far has been to include a modest amount of Vitamin K + plenty of Beta Carotene. But I am quite sure that I would benefit greatly from much larger amounts of Vitamin D. Research is now moving in the direction of discovering how this can be safely accomplished and that is a good thing. But until they get all that shagged out, I would suggest that megadosing on Vitamin D WITHOUT monitoring serum calcium, serum Vitamin D levels, AND knowing and watching for possible indications of Vitamin D toxicity on the assumption that current hypothesis regarding Vitamins A and K would be risky. I would, however, have to agree at this point that reasonable amounts of Vitamin A along with Vitamin D are probably a good direction to move in. - George
i think that if you're going through the untested route I would not exceed 2000IU of Vitamin D
Quote from: George999 on May 09, 2009, 11:09:14 AM
Thus my strategy thus far has been to include a modest amount of Vitamin K + plenty of Beta Carotene. But I am quite sure that I would benefit greatly from much larger amounts of Vitamin D. Research is now moving in the direction of discovering how this can be safely accomplished and that is a good thing. But until they get all that shagged out, I would suggest that megadosing on Vitamin D WITHOUT monitoring serum calcium, serum Vitamin D levels, AND knowing and watching for possible indications of Vitamin D toxicity on the assumption that current hypothesis regarding Vitamins A and K would be risky. I would, however, have to agree at this point that reasonable amounts of Vitamin A along with Vitamin D are probably a good direction to move in. - George
Probably not a bad strategy at all George!
It'd be interesting to know what Vitamin K levels people have, and for more study to take place regarding higher doses of Vitamin K. I think right now it's lagging behind the other vitamins in terms of research, but what there is tends to be promising: http://www.nutraingredients-usa.com/Research/Vitamin-K-may-reverse-artery-hardening-suggests-study
Has anyone had any success with PABA supplements or Potaba? I have previously taken high dose pantothenic acid (B5) for acne, this was after the prostatitis started but before the Peyronie's. Supplementing a single B vitamin can increase the use of related B complex vitamins, my B complex supplement didn't contain any PABA. PABA has a role in breaking down fibrous tissue. Anyone tried Potaba or PABA? Certainly it seems I should start supplementing PABA at the least.
http://www.the-bent-penis-website.com/potaba.html
I plan on trying to get in to see my Urologist this week with this, but I have a question for everyone regarding, what I'm gathering, is the fairly common prescribed combo of pentoxifylline and l-arginine.
I've been on them for about a month now, and I'm curious to know if I'm feeling some general side-effects. I had very mild headaches early on, but they subsided, as noted on the information I was given. But, lately I've started experiencing a lower back ache, that will move down to my upper legs, and then back up. It started out most notably when I was lying down.
Some of the published side effects included swelling, and low blood pressure, so I've been curious.
wt2001,
If I had to guess, I would guess that was the l-arginine. The only reason I say that is that Viagra and Cialis can both cause lower back aches (higher doses do that to me). Since NO is the thing that causes erections, and Cialis and Viagra promote NO function (and since arginine is an "NO donor"), perhaps there is a shared mechanism.
If I had to give up one thing, I would give up the arginine. You could trial yourself on a lower dose or off for two weeks and see what happens, or carry on and see if it resolves.
Tim
I dropped L'arginine after a couple of days as it did not make feel great (headaches, dizziness and indigestion) but have since substituted it with about 100g nuts per day (lot of Brazil's), and am getting excellent erection improvments in quality and regularity. I did read somewhere that 100g of nuts is approximately the equivalent of 1000mg l'arginine. Also the nutritional value of the good fats is a factor. I am careful to work out more so I don't gain any uncessary weight but its all positive and no side effects and you also know what you are putting into your body. Highly recommend it.
I've also found that my erections are improved since a added more nuts into my diet. I already take l-arginine anyway, but it still made a difference (in my opinion). Improving your diet in general is a good thing, and something that people with peyronie's and without really should pay close attention to.
NewGuy and UK:
You are both onto something. The Healthy Heart Diet recommends a handful of nuts daily.
Their recommendation is raw almonds and/or walnuts. Sorry, no roasted-salted nuts.
You don't need to eat them alone....I start my day with a small amount of oatmeal w/ 2T ground flaxseed, a shake of cinnamon, and a handful of chopped nuts...all topped w/ frozen blueberries (or strawberries).
And, keep-up the exercise.
JackieO
Sounds delicious!
For those in the UK, Sainsbury's Unsalted nut selection is a very healthy choice. Each bag contains a blend of brazil nuts, almonds, hazelnuts and jumbo peanuts. Per 1/4 bag 9.3g of protein, 2.1g of sugars, 4.3g saturated fats (16.4g mono-unsaturates, 6.8g polyunsaturates). As
Jackieo says, it's best to avoid the less healthy options. Much like cereals ( https://www.peyroniesforum.net/index.php/topic,821.0.html ) , it's important to make the right choices!
Newguy:
I missed that article the first time around....thanks for re-posting the link.
JackieO
I was eating Total for a good while until I read the label and saw the high fructose corn syrup which I'm trying to eliminate from my diet (very hard to do since it's in everything). I switched to a generic (Kroger brand) shredded wheat which is just whole grain wheat (plus BHT...don't know how healthy that is!!). Since I read Tim's recent post regarding whole grains contributing to a rise in blood sugar levels I've been wondering if the shredded wheat is a good choice. I have about 2 cups of the cereal with skim milk sweetened with stevia powder and a few slices of banana. Shredded wheat Nutrition Facts: Serving size 1 1/4 cup (50 grams): calories 170, calories from fat 10, sat. fat 0, Polyunsaturated fat .5 g., Cholesterol 0, Sodium 0, Total Carbs 40g, Dietary Fiber 6g, Sol. fiber less than 1g, Insoluable fiber 5g, Sugars 0, Other Carbohydrate 33g (What does "other carbohydrate" mean? Is this 33g in addition to the 40g?) Protein 6g. As I mentioned before I have mitral valve prolapse and a spike in blood sugar can cause symptoms (lightheadedness, heart flutters, etc.). I've been noticing that after breakfast I've been getting these symptoms, so afteer reading Tim's post about whole grains, this AM I had scrambled eggs with 1 piece of toast and a banana...no MVP symptoms. I'm wondering if the shredded wheat is too high on the carb side. Maybe I should have a smaller amount or switch to oatmeal with blueberries as Jackieo just posted.
Any ideas if the high carb content of this cereal could be causing a spike in blood sugar. Except for the carbs (and BHT) it sounds pretty healthy to me. Any suggestions?
Fred
Fred22:
I am away from home so I don't have all the facts in front of me but I can tell you that the breakfast you ate this morning is closer to being on-board for the Healthy Heart Diet and the Anti-Inflammation Diet.....except for the banana (and, maybe the toast). A banana is the worst fruit you can eat. I believe it is because bananas spike your glucose level. (I seem to remember the two worst foods, in this regard, are bananas and white rice!...both worse than a tablespoon of white sugar.) Best fruit is strawberries, second best is blueberries. Best cereal recommendation is All Bran.
Maybe I can be more help when I return home.
JackieO
JackieO,
Thanks for the info. I'll watch for your next post.
Thanks
are bananas really bad for Peyronies Disease - as i have 2 per day - why are they bad???
Iceman: I will get back to you on that...when I get home and have my books. I was responding primarily to Fred22's note that he is worried about his blood sugars/ glucose levels rising.
JackieO
Quote from: Iceman on May 19, 2009, 09:27:20 PM
are bananas really bad for Peyronies Disease - as i have 2 per day - why are they bad???
It would be a leap to say that bananas are specifically bad for peyronie's disease, because to know that for sure we'd need to strip down all factors that contribute to and/or cause inflamation in an individual and to what extent we have control over all of those mechanisms. It is true though that bananas do have high amounts of natural sugars compared to other fruits and as such you might want to mix it up a bit in terms of the fruit you eat. Too much sugar can encourage inflammatory responses. I tend to eat more veg really (typically less natural sugars), but overall I think the pros of most fruits outweight the cons. I wouldn't extend that to excessive consumption of juices though, as the body digests them very quickly, which is bad news for our blood sugar levels.
Please don't think that eating two bananas a day has has a dramatic impact on your peyronie's disease though, because that seems very unlikely. Only so much of our condition is within our control. Unfortunately.
Does anyone know of any contraindications of taking bromelain supplements? I've read some places that it can be taken indefinitely, in others that it should only be taken for 7-10 days, and in others it should not be taken with blood thinners. Since most of us supplement stack on top of pentox, I could see this as a problem. I'd like to hear it from you guys, if you have experiences with it, since I know guys like us have taken most combinations of anti-inflammatory medications under the sun.
Similarly, has anyone tried a broccoli dietary treatment for their peyronie's? It's suggested for the use of prostatitis, but I've read that it increased blood flow in all urogenital locations, including getting more blood flow to the prostate and penis. It also has an inhibiting effect on estrogen.
I've been taking bromelain for a week or so and wasn't aware of any limitation to the duration it can be taken for. I have experienced no side effects when used in conjunction with other supplements and medications. I seem to be able to tolerate most things I put into my system, with the exception of vitamin B complex, which I can take, but it makes my face feel really hot for about 15 minutes shortly after I take it... so I tend to steer clear.
I recently purchased
Vitmamin E 400 IU Capsules
Omega 3 1000 mg Capsules
L Arginine 500 mg Capsules
How much of what would you recommend taking? Also I have noticed that my parents have calcium + D capsules, could this be a substitute for vitamin D or beneficial in anyway? I also plan to up my intake of sources for vitamin D and K. Plus my Multi-Vitamin. And I am also thinking about starting up colchicine...from what I have read it could help prevent further scarring from happening...but nobody seems to have taken it with anything positive to say, so maybe not. Ive also taken up running around 6-9 miles a week plus 3-4 days of weights. I see the doctor on June 1st and I am fairly confident he will prescribe Pentox. Hopefully I can get him to consider a VED also.
Sounds like you are on the right track. The Pentox and VED are your best options, hopefully they will work out for you. The exercise will also be very beneficial. In terms of vitamin D, I would AVOID the calcium+D stuff. There is some evidence that the D in these pills is not effectively absorbed by the body. The D that is best absorbed is the stuff that comes in the soft gels in an oil based suspension. So stay away from the dry form of D. - George
If I am trying to gain weight. I am currently 5 10 155. I take protein shakes with milk daily. Usually 3 cups 3 scoops a day. should i stop doing this. Is this harming my condition. Keep in mind that I work out basically daily, either cardio or weights. Also how much Larginine (mine are 500mg) is recommended to take daily, and the omega 3 fish oil capsules that are 1000mg. I am currently taking one fish oil capsule a day(1000mg) and 2 arginine (for 1000mg). And i am consuming about 50 almonds a day (heard they were high in arginine). Please Help!
Startingtolosehope...
You can over think this stuff. You are taking supplements that might help you and you are taking them in doses that might be of benefit. Beyond that, there just isn't that much room for "fine tuning".
When I watch race cars on television, the hands of the drivers wiggle back and forth making minuscule corrections to direction far faster than anything I have ever done, or had to do. It looks almost jerky in action.
When we drive down the highway, we are not compelled to correct our course that frequently or in such a fine-tuned manner. It makes no sense - nothing is better for it.
Figuratively speaking, I think that you now have the luxury of leaning back and putting one hand on the wheel and cruising for a while, and seeing if you are on course. I do not think that you will benefit form more fine tuning to your diet or intake.
Perhaps you could even consider changing your name to "starting to have hope", or "Hope2009" (sorry Hawk, couldn't resist).
Tim
I would agree with Tim on this. Just find a way to get on Petox if at all possible and work on getting your vitamin D up. Also get started on the VED if you can. All the other stuff is peripheral. Whether it is helping you or harming you, it is not to a great degree. The Pentox and VED are going to have a far greater effect for you than all the other stuff put together. So don't sweat them at this point. Later on, you may find it helpful to lower the arginine a bit, or you may not. But at this point concentrate on those things mentioned above that can REALLY change the course of your Peyronie's. - George
I have a question regarding the Viagra part of the PAV cocktail. My uro prescribed me both pentox and Viagra (100mg pill - cut into four 25mg pieces).
When is the best part of the day to take the Viagra, considering the Viagra is not necessarily for sex, but for blood flow purposes?
Thanks,
CF
Quote from: cowboyfood on May 26, 2009, 03:56:38 PM
When is the best part of the day to take the Viagra, considering the Viagra is not necessarily for sex, but for blood flow purposes?
Before bedtime on an empty stomach. Food interferes specifically with Viagra. The most powerful erections tend to be NTE's (sleeping Night Time Erections). The Viagra may enhance those natural erections.
Quote
...The most powerful erections tend to be NTE's (sleeping Night Time Erections). The Viagra may enhance those natural erections.
Wow, I found this to be true last night!
CF
Sorry for the delay in responding. I was traveling and have finally landed where I can respond to e-mail for a day or two.
Glad to hear you are on a regular exercise routine. That is really important. When I was your age I was 6'-0"+ and weighed 127 pounds (no lie! Skinnier than you!). I am now 57 years old, 6'-0" 185 pounds...and fit. I do regular cardio (elliptical, run-walk, swim) and weights. At the time (I think I was 27), my doctor prescribed the same protein-type diet you described. Back then no one gave a second thought to "raw eggs" so I always threw a raw egg into the blender. If you do that today....make sure to get pasteurized eggs. I don't see any problem in combining the high-protein weight-gaining diet with your oral treatment for Peyronies Disease. One is medical...the other is nutritional.
Do you still have a Uro appointment on June 1? I stated before that I think you should print a list of the pills and dosages you are taking along with any notes on your dietary supplements. Also, print material from this site explaining the protocol/ preference for Pentox (over Potaba) and any other drugs or treatments you are curious about. Several members have recommended to me that I take photos of my penis "erect" to short-cut the need to undergo an induced erection on the first meeting.
I hope you have a good support system. I think I am lucky to have found this forum. Drop me a note anytime you need an ear.
JackieO (Jack)
hi all,
thanks to my friendly and sensitive (female) urologist and you guys i'm now on pentox since early april 2009.
i printed out the study of the doc that is located in san francisco and gave it to her.
she said more man are affected by ipp than i can imagine. she told me that she had the best resulst giving vitamin d to her patients but
that there is no aid that works for all. it's a long process and needs a lot of try outs.
she said that she wouldn't like me to use vitamin d and pentox at the same time, because you can't tell whom of the two caused the
adverse effects if they are any.
ok, where do i stopped...? three pentox a day since the start of april 2009 and so far, i don't feel any significant changes.
sometimes the penis do feels a bit better during masturbation but i'm not sure if that is fact or illusion (i tend to illusion).
however i want to use it at least till september, my doc recommended me to use it at least 4 month.
i wonder if there is a penotx thread out there that i missed?
any feedback on other brothers in pain regarding pentox would be great.
regards from germany my brothers in pain
fuzzy
Most folks do not see quick results with Pentox. The case reports suggested that the patients were better at one year, and so kept going for another year. Clearly, a long term approach is important.
Tim
Quote from: Tim468 on May 31, 2009, 10:00:56 AM
Most folks do not see quick results with Pentox. The case reports suggested that the patients were better at one year, and so kept going for another year. Clearly, a long term approach is important.
Tim
one year at least? wow! again, is there a pentox threat available? i couldn't find one.
i wonder how many are still using it and if they have any improvements?
do you guys all have that bent? i don't have one but i have the same symptoms.
has anyone of you guys noticed that the penis has changed in color since the start of the disease?
my penis is a lot darker and looks somehow inflamed, and i'm sure it has nothing to do with imagination.
have a nice sunday all.
Quote from: luka-brasi on May 31, 2009, 01:49:13 PM
one year at least? wow! again, is there a pentox threat available? i couldn't find one.
i wonder how many are still using it and if they have any improvements?
do you guys all have that bent? i don't have one but i have the same symptoms.
has anyone of you guys noticed that the penis has changed in color since the start of the disease?
my penis is a lot darker and looks somehow inflamed, and i'm sure it has nothing to do with imagination.
have a nice sunday all.
luke-brasi...... are you saying that you have been diagnosed with Peyronies Disease but you do not have a bend when erect? What other symptoms do you have?
Quote from: lwillisjr
luke-brasi...... are you saying that you have been diagnosed with Peyronies Disease but you do not have a bend when erect? What other symptoms do you have?
my doc could find no hard evidence of plaques or scar tissue although on the last ultrasound there was something she couldn't really identify. i have all the typical symptoms, cold, numb, rubber like feelings in flacid state, stiff uncomfortable feeling in flacid state especially on the left side. i can feel a paine that gehts worse during sex on the down side of my penis from the bottom to almost the top but with max pain in about the middle of my penis where i can feel some sort of scar tissue (i do feel like i can't hold the blood in in the left chamber do to the scar tissue). sometimes there is an hourglas deformation on the same height as the weird tissue but it straightens out when fully erect. my erection is gone as soon as i stop touching it, or even in the short moment while changing position with a woman. i lost almost all of my spontaneous day time erections but i still have some week erection during morning hours.
right now, i'm keeping it warm while i look tv with a warm wrap, it gives me a good feeling at least for that time.
i would like to try three month without masturbating or sex while still using pentox and do the warm wraps.
who knows? maybe it would work? the longest i was able to manage without masturbating were two weeks but i had the feeling that even my soft morning erections were gone during that time, so i'm a bit afraid what 3 month without masturbating would do more harm than good.
p.s.
i'm 31 years old and i do feel horny as often as before the disease but i can't transform my sexual energy into my cold and shrinky penis.
:(
nobody?
i'm trying not to masturbate for three month right now. still a long way ahead, i have six days behind me right know.
the only thing that scares me is that it feels so dead after this six first days, hard and cold shrinking feeling gets even worse?
i'm not sure if this is the right therapy i chosed but everything else did not work.
anyone think it maks sense not to touch it for such a long period of time.
tia
luka
Quote from: luka-brasi on June 03, 2009, 04:47:28 PM
nobody?
i'm trying not to masturbate for three month right now. still a long way ahead, i have six days behind me right know.
the only thing that scares me is that it feels so dead after this six first days, hard and cold shrinking feeling gets even worse?
i'm not sure if this is the right therapy i chosed but everything else did not work.
anyone think it maks sense not to touch it for such a long period of time.
tia
luka
Luka,
I'm relatively new to the forum, but I'd like to quickly and briefly explain the information board member's provided the forum that I acted on that, I believe, is related to your concern.
In general, if one has peyronie's disease then it is beneficial to obtain erections, preferably on a daily basis.
Masturbation may or may not worsen the condition, but if it can impair your condition, the issue is probably "how" you masturbate, not "if" you masturbate. (need citation!) Therefore, obtaining an erection by masturbating can "help" your condition, but any "significant trauma" to your penis could worsen your condition. So, the issue is probably what does "significant trauma" mean.
A widely endorsed suggestion that benefits the penis at least as much as natural erections benefit the penis is the use of a VED. In other words, the VED may in fact be more beneficial to your condition than obtaining nocturnal or stimulated erections.
This issue has been brought up and addressed previously, so it's buried in the forum in a few places. You might search the forum with the term "masturbation."
Also, read the VED highlights and the entire thread.
CF
thanks cowboy! i did the "masturbation" search and guess what i finished right now. ;D
i just had the feeling that i had to do it, i could not stand that dead, shrinking feeling anymore.
at least tomorrow i will have a better "full hang" due to my masturbation today.
it seems to me like ist best to shake the tree every second day.
thanks for the quick reply!
it's late here...
have a great evening if you still around to read it.
I recently got my urologist to give me a scrip for trazodone - and though I've taken only one pill (broken into two halves over the course of 4 days, with a viagra thrown in on one of the off days to give the girlfriend a bit of fun on her birthday) I can definately see the difference it makes! I'm not too sound of a sleeper, and I roll around a lot - so I tend to wake up more than usual when I've got an erection, as my body doesn't want me rolling on it as I shift around.
In fact, trazodone has made such a difference that it's making me a little paranoid! I'm cutting my 50mg pill in half, and often into 1/3 as my doctor suggested, but after waking up at least 4 times one night with a rock solid erection (8.5-9.5 on the 10 scale!) I'm a bit worried that I'm running a risk of developing priapism in my sleep. I don't know if that's even possible, but if one sleeps for 8 hours would it be plausible that one could have an erection for over 4 of those hours?
I will admit that when it comes to medications I am as paranoid as can be, given the circumstances that left me with Peyronies Disease in the first place...but I'd hate to get MORE problems becasuse I wanted healthy nightime erections. Wikipedia has a laundry list of side effects associated with trazodone, but my doctor only warned me of delayed ejaculation - though he perscribed it to me with a confidence that makes me think he's familiar with the drug for this purpose. Any advice, oh wise fellow sufferers?
Ocelot,
You ask if it is possible to get priapism from trazodone. I think the answer is yes, just like it is possible from Viagra. In fact I think priapism is mentioned on the insert that comes with trazodone. I do think it is extremely unlikely to do so if you do not normally get night time erections however. If you do get normal night time erections the question would be why would you take trazodone.
I have always advocated that half of the smallest trazodone tablet on the market is the most under appreciated drug in existence. At a cost of about 3 cents a dose it gives better night time erections than 5 dollars worth of Viagra. The only side-effect I have noticed is it helps you sleep more soundly. I have never much used it for a daytime erection since it did not seem to work for that. I do not know that I would mix it with Viagra however unless it is the only way I could get an erection and I was confident combining the two was safe. Might be a good question for a trusted pharmacist.
The biggest unknown about Trazadone (to me at least) is the mechanism through which it works to cause erections. I can find no specifics on this. Because of that, it is also unclear if it would inhibit TFG-B1 like Viagra. I think it is possible that the TGF-B1 inhibition is just a result of the oxygenation but that is also not clear to me.
Keep in mind that the list of side-effects for trazodone is dose related. Trazodone is often prescribed for depression at more than 8 times the dose that we are talking about here.
PS: When you combined it with Viagra did it have a greater effect than that same dose of Viagra alone?
I will probably move these to the ED topic.
Well, well. Look whats currently floating around in research circles:
Quote from: HealthDay
Herb May Offer Hope for Autoimmune Diseases
THURSDAY, June 4 (HealthDay News (http://www.healthday.com/Article.asp?AID=627759)) -- A compound derived from hydrangea root, an herb used in traditional Chinese medicine, halted the progression of an autoimmune disorder in laboratory mice and human cells, new research shows.
What makes the compound, halofuginone, so promising, the researchers said, is that it slowed progression of the disease without suppressing normal immune system functioning.
And more ...
Quote from: Hebrew University of Jerusalem
Halofuginone: A Novel Antifibrotic, Antiangiogenic And Antimetastaic Therapy
Hebrew University of Jerusalem (http://ksvm.agri.huji.ac.il/students/seminars/gili-bilu12-06.htm) -- Halofuginone is an alkaloid originally isolated from the plant Dichroa febrifuga, in China. The alkaloid, from the plant, was used as a coccidiostat in avians, causing a reduction in skin tension, as a side-effect.
Halofuginone was found to significantly inhibit the gene expression of the a1 subunit of type I collagen and suppressed collagen I synthesis.
Halofuginone demonstrated antifibrotic, antiangigenic and antimetastatic characters, in vitro in cell cultures and in-vivo in many animal models.
Want to try some?
Chinese Herbs Direct (http://www.chineseherbsdirect.com/product_info.php?products_id=1320)
Herbs Direct (http://yhst-12999396255029.stores.yahoo.net/chshexpofero.html)
Disclaimer: I have had no previous dealings with the above vendors and as such can not vouch for their products or their integrity, so you are on your own with that, but this does sound quite interesting. - George
Quote from: alexk on April 14, 2009, 10:35:42 PM
Lack of sleep will wreck your body and mind within a couple of days, which is bad news for anybody who's undergoing systemic inflammation and is probably dealing with depression too. Alex
Alexk- I think you are right about the effects of lack of sleep. I 'm hoping you will share more about how regaining healthy sleep patterns may benefit people with Peyronie's. Any suggestions on how you've turned the sleep thing around? One of the great challenges here is working out a sensible schedule of exercise and nutrition and then staying on it when one is half asleep all the time. Ideas from anyone on sleep would be interesting.
Althought this topic deals peripherally with getting adequate nutrition it might be more profitably posted and get more viewing in another topic area. Any suggestions?
Hunter
I have been taking Potaba for 6 weeks. In the quote, below, Thin Man noted a "tingling sensation" in his legs that he (might be) attributing to Pentox. I have been feeling tingling in my lower legs over the last week or so and am now wondering if it might also be a side effect of Potaba. Does anyone taking Potaba feel this same leg-sensation? I don't recall reading that this is one of the side effects of Potaba.
Quote from: Thin Man on January 01, 2009, 06:11:19 PMPentox gives me mild but quite noticeable vertigo and tires me out. Also, Pentox makes me feel strangely hot (not feverish), during exercise, and I'm getting the tingling in the legs others have complained about (I suppose that might be a good thing? - but it doesn't feel so good to me).
I did an internet search and I did find Potaba side effects include, ...shakiness, unsteady walk, tiredness or weakness. Maybe a combination of these is what I am feeling as "restless leg"...tingling.
JackieO
Quote from: George999 on June 04, 2009, 05:59:48 PM
Well, well. Look whats currently floating around in research circles:
George999, I noticed that too. I'm not quite at the point yet where I would want to try it myself. ;)
Another Chinese herbal (that I have on hand as it turns out) that has some antifibrotic activity is astragaloside (here in the heart (http://www.ncbi.nlm.nih.gov/pubmed/17879539), but there are also studies for liver and kidney fibrosis). To be honest, I don't know how applicable studies that show substances helping fibrosis of internal organs are to Peyronie's. The heart is a muscle though and much different from the liver. Astragaloside also accelerates wound healing.
If someone chose to take Chang Shan, they'd have to figure out what a good dosage would be. The powder from chineseherbsdirect.com is "5:1 Concentrated Extract Powder".
s&s
has anyone tried this : Halofuginone and is it worth a go to help with Peyronies Disease??
Well, I have some ordered from a local herbal supply shop. Its dirt cheap. It does come in powder form, so I will have to pack my own capsules. But I do plan to give it a try and see what effect it has. I would probably not being trying it if my only issue was Peyronie's. But I also have the currently subliminal neuropathic issues which are much more debilitating than Peyronie's if they flare up and that makes it worthwhile for me to explore chang shan. I am looking forward to see, not only how the neuropathy responds, but also how the Peyronie's responds. If I note anything interesting, I will report back here. At this point, my Peyronie's is pretty much dead in the water. I have had zero flareups since starting the Pentox and Vitamin D regimen. So I will be looking for any significant improvement in that status quo. :) - George
And, oh, by the way, s&s, how is it going with the alagebrium?
Some interesting suggestions here guys. In the UK Astragaloside is available from an apparently reputable seller on ebay http://shop.ebay.co.uk/merchant/brainfoods2007_W0QQ_nkwZQQ_armrsZ1QQ_fromZ (towards the bottom of the page)
I haven't had much luck finding a UK source for Halofuginone, though maybe its available from local herb stores. There was an article in a popular UK newspaper relating to it a few days ago though:
http://www.dailymail.co.uk/sciencetech/article-1190889/How-humble-hydrangea-plant-hold-key-curing-MS-diabetes-arthritis.html
Does anyone have any basic idea relating to dosing? I'm assuming that the answer is no, but any reasoning for taking a particular dose would be appreciated.
I almost forgot to post this. Inhousepharmacy finally added trental to thes ite after months of me asking them to do so. I'm sure many people are able to gain a supply via a urologist, but for those having no luck, this may be a good alternative. They have added the drug under 'heart health', probably because I didn't stipulate why I was enquiring after the drug:
Hi XXXXXXXX,
The product is now added and available at the following link for US customers.
http://www.inhousepharmacy.com/heart-health/trental.html
or the following link for UK customers
http://www.inhousepharmacy.co.uk/heart-health/trental.html
I apologize for how long it took to load the product.
Sincerely
Kerry
Pharmacist
www.inhousepharmacy.com
Is pentox really $55 for 50 pills? At 3 a day that's damned expensive.
Quote from: RichB on June 07, 2009, 11:51:17 PM
Is pentox really $55 for 50 pills? At 3 a day that's damned expensive.
No doubt they place a premium on treatments, because they assume that people are only ordering online due to being unable to attain the medication through other means. The ideal scenario of course is to attain the treatment through an existing healthplan, which would likely result in it costing next to nothing. Unfortunately not everybody has the appropriate health coverage, or they are not able to convince those responsible for their treatment that pentox is the appropriate route to go, even though it's one of the only oral treatments that has shown promise.
Several weeks ago I took, for the first time, any type of ed prescriptive drug; It was Cialis, and I used between 5mg and 10mg about three times per week (depending on how good I cut the pill). I definitely noticed the positive effect Cialis had on my daytime and nocturnal erections.
Subsequent to that prescription, the uro prescribed me 25mg of Viagra daily. I noticed last night, about an hour after digested the 25mg of Viagra, that I obtained a "rock hard" erection; a nice lasting one also.
It was nice to see such a hard erection, but I began to wonder if this could have any potential negative effects on my treatment plan. I thought about this issue because I'm doing the VED protocol and I'm very cautious about "overpumping." So, I wondered if one should be "cautious" about obtaining a nice, long-lasting Viagra-influenced erection (drawing an analogy between Viagra use and VED use).
Additionally, since I'm taking only 25mg of Viagra, I wondered how a 100mg dosage would effect me. I'm glad that if "situational ed" (performance anxiety) is an issue (and, it can be for me) that the wonders of modern medicine offer help. However, I'm a little cautious about using more than 25mg.
Has anyone noticed a difference between the smaller dosage and the larger dosage. Common sense tells me to stick with a lower dosage, unless it is ineffective.
Thanks (these ed drugs are very new to me)
CF
Cowboyfood - I'm glad that viagra has helped you achieve the desired result. If 25mg gave you a hard erection, it's pointless taking anything greater than that dose. I don't think you should worry about achieving a long lasting erection either, as I don't see how the equivalent of VED overpumping can occur through use of viagra. The only dangerous situation would be if you experienced priapism and that's a very unlikely scenario.
On a related note, I'm going to see if I can be prescribed trazodone, as my nighttime erections are not all that frequent at present, and they are important for all men, in my view especially those with problems like peyronie's.
QuoteFibrous capsule formation around implants remains a difficult problem that has been studied for decades. The etiology is elusive, but the end result is the deposition of a dense collagenous capsule around implanted materials. The purpose of this study was to determine the effects of a type I collagen synthesis inhibitor, halofuginone, on fibrous capsule formation around implanted materials. Silastic disks were implanted subcutaneously into 4 groups of adult male rats for up to 8 weeks. Group 1 received drug throughout the study, group 2 received drug during the first half only, group 3 received drug during the second half only, and the control group received no drug. Implants were removed and histology of the capsules was examined. A collagen index score was calculated from digital images of trichrome-stained histologic sections, which permitted semiquantitative comparison of collagen content among the 4 groups. The collagen index values clearly indicate that halofuginone effectively inhibited collagen deposition within the capsule around the implanted disks. Halofuginone treatment also resulted in a decrease in the collagen index score in rat skin, indicating that halofuginone may affect preexisting collagenous structures. The ability of halofuginone to inhibit collagen deposition in new and preexisting fibrous capsules suggests that it may be a useful adjunct to minimize the formation of capsules around implantable prostheses.
- http://journals.lww.com/annalsplasticsurgery/Abstract/2005/03000/Halofuginone_Inhibits_Collagen_Deposition_in.20.aspx
A few chinese companies appear to offer pure Halofuginone, but I can't vouch for them. Does anyone know of US or European companies offering the same?
Quote from: newguy on June 08, 2009, 04:44:48 AM
A few chinese companies appear to offer pure Halofuginone, but I can't vouch for them. Does anyone know of US or European companies offering the same?
One option is to order enough to make it worthwhile and get it tested (http://www.aaclabs.com/) for contaminants. I've priced it out in the past, and I think it might be in the $75-$150 range.
s&s
Quote from: slowandsteady on June 08, 2009, 09:00:50 AM
One option is to order enough to make it worthwhile and get it tested (http://www.aaclabs.com/) for contaminants. I've priced it out in the past, and I think it might be in the $75-$150 range.
s&s
That's a good idea. If people have success with more readily available versions, this will likely be something that I'll look into and could be useful to our peyronie's community.
Btw, what's your evaluation at this time of alagebrium? How's your condition is general? Stable?
Nothing we didn't already know, but a useful reminder of how modern diets high in omega 6 can contribute towards inflammation, and how omega 3 can counteract this.
QuoteFor the past century, changes in the Western diet have altered the consumption of omega-6 fatty acids (w6, found in meat and vegetable oils) compared with omega-3 fatty acids (w3, found in flax and fish oil). Many studies seem to indicate this shift has brought about an increased risk of inflammation (associated with autoimmunity and allergy), and now using a controlled diet study with human volunteers, researchers may have teased out a biological basis for these reported changes.
Anthropological evidence suggests that human ancestors maintained a 2:1 w6/w3 ratio for much of history, but in Western countries today the ratio has spiked to as high as 10:1. Since these omega fatty acids can be converted into inflammatory molecules, this dietary change is believed to also disrupt the proper balance of pro- and anti- inflammatory agents, resulting in increased systemic inflammation and a higher incidence of problems including asthma, allergies, diabetes, and arthritis.
Floyd Chilton and colleagues wanted to examine whether theses fatty acids might have other effects, and developed a dietary intervention strategy in which 27 healthy humans were fed a controlled diet mimicking the w6/w3 ratios of early humans over 5 weeks. They then looked at the gene levels of immune signals and cytokines (protein immune messengers), that impact autoimmunity and allergy in blood cells and found that many key signaling genes that promote inflammation were markedly reduced compared to a normal diet, including a signaling gene for a protein called PI3K, a critical early step in autoimmune and allergic inflammation responses.
This study demonstrates, for the first time in humans, that large changes in gene expression are likely an important mechanism by which these omega fatty acids exert their potent clinical effects.
- http://www.medicalnewstoday.com/articles/151995.php
Quote from: newguy on June 08, 2009, 01:24:11 PMBtw, what's your evaluation at this time of alagebrium? How's your condition is general? Stable?
I think that alagebrium is great for clearing AGEs out of the corpora cavernosa; this it does after just days. The trouble is that Peyronies Disease is an issue of the tunica albuginea. I think that fibrosis is a bigger issue than AGE accumulation. Alagebrium might work longer term, but after 5 months I haven't seen much impact.
My condition is stable to slightly worsening, with some hourglassing on top.
s&s
Thanks for the update s&s. Maybe alagebrium would be more useful for those with inflammation but little or no fibrosis as yet? I suppose it's hard to tell.
In future maybe will have enough tools at our disposal to be able to carve out more specific regimens for people depending on their stage of the disease. I have often wondered how much the average person would benefit if they immediately got on pentox, alc, l-arginine, vitamin D and some of these newer substances/herbs following injury (assuming that an injury took place). All too often months pass by where people battle to either understand the condition or gain access to the basics, and a window of opportunity may be lost.
Quote from: newguy on June 08, 2009, 06:52:48 PMI have often wondered how much the average person would benefit if they immediately got on pentox, alc, l-arginine, vitamin D and some of these newer substances/herbs following injury (assuming that an injury took place). All too often months pass by where people battle to either understand the condition or gain access to the basics, and a window of opportunity may be lost.
I think this is a really major problem. Doctors seem to treat Peyronie's like "if you just give it time, it will probably take care of itself". Its like firemen going to a house on fire and telling the owner, well will just wait a few hours and see if it goes out and if it doesn't we'll put some water on it. Personally, I think anyone going to a doc complaining of pain in their penis or any kind of bending should be put on Pentox immediately and tested for vitamin D deficiency. Maybe if that was done, it would put the fire out before it could get started, but we all know that is NEVER done. - George
George says "I would probably not being trying it, halofuginone, if my only issue was Peyronie's because I don't have peyronies symptoms.".
That begs the question why are you here literaly every day?
This user has been permanently banned for disregarding all warnings about his posts, all of which have been for the sole purpose of disrupting the PDS forum.
mo - Maybe instead of being critical of the treatments and views of others, you would like to suggest treatments or avenues that may be of use to us. It's useful to have different takes on things, it's however not useful to refer to people with opposing views as "kids" and ask people why they come here. People are here because they want to be here, and because it's helpful to them in some way.
Well it looks like food has run out under the bridge and the trolls walk amongst us again. Hawk, isn't there a way to ban this guys IP?
And George, that's a great example. Or a doctor going "Well, it looks like you have a tumor that may or may not be malignant. Let's observe you for a year, and if you don't get better I guess we'll start some treatment." -- any responsible medical professional would be appalled at such a diagnosis - yet it's the traditional method of dealing with Peyronies Disease patients!
Oh, of course, there is a secret cabal of doctors who possess the cure, but only "one user" knows how to get to them because he just tried so much harder than we did. Shucks.
To bend over backwards Mo was warned as were two others. In fact their rights on their forum were somewhat restricted as part of their formal warning. It becomes clear that Mo has no interest in the education, support, or awareness mission of the PDS. He has never asked or contributed anything related to these issues. Every post has been for the sole purpose of confrontation. Since all warnings were disregarded, the decision has been made that Mo is immediately and permanently banned from this forum.
I'm giving topical vitamin D from Now 5000 IU softgels (which is just D3 and olive oil) a shot. No DMSO involved. It takes a while to absorb through the skin, so I'm thinking that before going to sleep might be a good choice. The theory would be that the layers of the tunica albuginea get less circulation and might benefit from a topical application. Any thoughts? At the least I'd suspect that this would be very, very low risk.
s&s
slowandsteady - From what I can understand Daivonex is a topical Vitamin D treatment. Apparently it has shown some success in the treatment of psoriasis. Whether topical vitamin D is able to penetrate deep enough on its own though it's anyones guess. Also if it would be of use to do so is still an unknown. Still, I do like the fact that people are trying to hit this problem from new angles, it can only be a good thing.
According to http://www.masenka.be/2007/10/12/vitamin-d-against-scars/ a "University of California at San Diego researchers found that the skin surrounding a wound contains four times as much vitamin D as uninjured skin does." I couldn't find the original study, but if true this could mean that there may be some merit to channel vitamin D to the site of an injury.
George,
You say no longer have Peyronies symptoms.
Does this mean that you no longer have curvature or pain? Have the symptoms disappeared since you started the pentox and vit D?
Fred
I am 5 wks into this junk via injury during intercourse. My scar tissue, plaque, inflammation, whatever you want to call it, is hard and directly below the head of the penis. I can still get erections but they are painful. Does the pain ever go away? I am currently undergoing VI's to limit the damage hopefully....only 22 y/o. Thanks in advance.
YoungOne,
Pain and the intensity thereof seems to vary from person to person, as do most Peyronie's symptoms it seems. My pain began over 3 years ago and felt somewhat like a UTI, then escalated till during the second year or so I was taking 800 to 1000 mg ipuprofen a day, and sometimes this did not phase the often excruciating pain. My complaint was not painful erections , but pain in general. After the first year or year and a half the pain subsided to the point I discontinued the ibuprofen (I was also getting concerned about the fact that the IB could be damaging my stomach and increasing my risk for heart attack or stroke). After 3 years I still have some "inflammatory" type pain almost daily, although I do catch an occasional break where I'm pain free for a few days. I've been told my pain is not typical. Some doctors will say that the pain usually goes away within 12 to 18 months, but , as I said, this condition seems to strike each individual in different ways. My uro will only prescribe vit. E, but some on this forum are taking pentox with positive results (Read posts by George999). You might want to discuss pentox with your urologist, but most will not prescribe it for lack of sufficient statistically signicant results supported by double blind studies. Real all the posts on this and other threads to educate yourself. Good Luck.
Fred
Along the same lines as the pentoxifylline and tocopherol study relating to breast cancer that I previously posted (https://www.peyroniesforum.net/index.php/topic,22.msg19498.html#msg19498).
QuotePURPOSE: To investigate whether the application of pentoxifylline (PTX) and tocopherol l (Vit. E) could modify the development of radiation-induced heart disease and downregulate the expression of transforming growth factor (TGF)-beta1mRNA in rats. METHODS AND MATERIALS: A total of 120 Sprague-Dawley rats were separated into four groups: control group, irradiated group, experimental group 1, and experiment group 2. Supplementation was started 3 days before irradiation; in experimental group 1, injection of PTX (15 mg/kg/d) and Vit. E (5.5 mg/kg/d) continued till the 12th week postirradiation, whereas in experimental group 2 it was continued until the 24th week postirradiation. All rats were administrated a single dose of 20 Gy irradiation to the heart except the control group. Histopathologic evaluation was performed at various time points (Days 1, 2, 4, 8, and 12 and 24th week) up to 24 weeks after irradiation. Changes of levels of TGF-beta1 mRNA expression were also investigated at the same time points using competitive polymerase chain reaction. RESULTS: Compared with the irradiated group, levels of TGF-beta1 mRNA of the rat hearts were relatively low in the two experimental groups on the 12th week postirradiation. In experimental group 1, there was a rebound expression of TGF-beta1 mRNA on the 24th week postirradiation, whereas that of the experimental group 2 remained low (p < 0.05). The proportions of collagen fibers of the two experimental groups were lower than that of irradiated group (p < 0.05). A rebound could be observed in the experimental group 1. CONCLUSION: PTX and Vit. E downregulated the expression of TGF-beta1 mRNA. The irradiated rat hearts showed a marked pathologic response to the drugs. The withdrawal of drugs in the 12th week postirradiation could cause rebound effects of the development of fibrosis.
- http://www.ncbi.nlm.nih.gov/pubmed/19306752?ordinalpos=30&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
Quote from: Fred22 on June 10, 2009, 01:12:36 PM
George,
You say no longer have Peyronies symptoms.
Does this mean that you no longer have curvature or pain? Have the symptoms disappeared since you started the pentox and vit D?
Fred
I think I actually said that I have had "zero flareups". Flareups are when you get acute symptoms like pain and obvious progression. That I have not had. But the chronic symptom of deformity is still there. The Pentox and Vitamin D HAVE eradicated pain and progression. I only wish that my uro had prescribed Pentox at the onset, if he had, I am confident I would not be where I am today. - George
Quote from: Fred22 on June 10, 2009, 01:12:36 PM
George,
You say no longer have Peyronies symptoms.
Does this mean that you no longer have curvature or pain? Have the symptoms disappeared since you started the pentox and vit D?
Fred
Quote from: George999 on June 12, 2009, 11:42:10 AMI think I actually said that I have had "zero flareups". Flareups are when you get acute symptoms like pain and obvious progression. That I have not had. But the chronic symptom of deformity is still there. The Pentox and Vitamin D HAVE eradicated pain and progression. I only wish that my uro had prescribed Pentox at the onset, if he had, I am confident I would not be where I am today. - George
So frustrating! Am I correct that you started the pentox and D3 around the same time? If so, which do you think has been the most effective in the remission of progression of your symptoms?
Quote from: George999 on June 12, 2009, 11:42:10 AM
The Pentox and Vitamin D HAVE eradicated pain and progression. I only wish that my uro had prescribed Pentox at the onset, if he had, I am confident I would not be where I am today. - George
George,
I had a few flair-ups after initial progression. ALC
seemed to control them. As of late I have done little that is Peyronies Disease related and I still have no flare-ups. In view of this and since it is typical for painful flair-ups to subside (at least for long periods of time). How can you be sure the lack of flair-ups is not just the normal course of Peyronies Disease? As you recall when doing surveys of treatment effectiveness it is generally agreed that pain is not a valid indication of treatment effectiveness since it always resolves. We usually measure success of VI, topical Verapamil, etc as objective improvement in deformity.
Quote from: YoungOne on June 10, 2009, 09:22:01 PM
Does the pain ever go away?
Has anyone had any experiences with pycnogenol for pain? There are lots of positive studies behind this one for various things.
That is a European drug not available i the US. Similar to other NSAID drugs.
Tim
Quote from: Tim468 on June 12, 2009, 07:04:53 PM
That is a European drug not available i the US. Similar to other NSAID drugs.
Tim
Was that in response to my post? Pycnogenol is available in the US. Look at iherb.com. I find that I get Peyronie's pain relief from it.
It decreases joint pain in osteoarthritis, lowers C-reactive protein, it really lowers plasma fibrinogen levels (PMID 19017467 (http://pubmed.gov/19017467)). It's been shown to help with the bad effects of long airplane rides by keeping ankle swelling down (PMID 16015414 (http://pubmed.gov/16015414)). Cool stuff.
s&s
"The Pentox and Vitamin D HAVE eradicated pain and progression. I only wish that my uro had prescribed Pentox at the onset, if he had, I am confident I would not be where I am today. - George"
George,
I agree with you on that 100%, I had peyronies about 7 years before I got on pentox and it still worked for me, but no cure. One thing is for sure, over the past decade my penis has become increasingly "harder" or less flexible, when I first had the injury in the first two years, it hung to the right constantly, but rather than feeling like it has a cast around it, as it does now, it was still totally flexible. As it has hardened, the erection quality has worsened, and the length I'm able to hold one without help. Also the bend has slightly worsened as well. In addition size has slowly been lost over time as well. Because of all this, it is why I highly encourage and push new people who are totally healthy to get on pentox immediately for at least six months, I'd stay on it for more like nine months. Its only about 32 dollars per month at wal-mart, and the side effects are minimal. Considering the alternatives, I don't think there is any better option.
Comebackid
Here's some more info on pycnogenol. When taken with l-arginine, it produced great results against erectile dysfunction (PMID 12851125 (http://pubmed.gov/12851125), article here (http://findarticles.com/p/articles/mi_m0FDN/is_4_8/ai_111304013/)), much better than l-arginine alone:
QuoteAfter 1 month of treatment with L-arginine, a statistically nonsignificant number of 2 patients (5%) experienced a normal erection. Treatment with a combination of L-arginine and Pycnogenol for the following month increased the number of men with restored sexual ability to 80%. Finally, after the third month of treatment, 92.5% of the men experienced a normal erection.
Boosting healthy NO production would seem to be a good thing in Peyronies Disease (PMID 12454687 (http://12454687)):
QuoteThe expression levels of TGFbeta1 and pro- and anti-fibrotic gene products, along with the nitric oxide/reactive oxygen species (NO/ROS) ratio in the tunica albuginea, appear to be essential for the formation and progression of the Peyronies Disease plaque and effect the expression of multiple genes.
s&s
Quote from: Hawk on June 12, 2009, 12:50:17 PM
Quote from: George999 on June 12, 2009, 11:42:10 AM
The Pentox and Vitamin D HAVE eradicated pain and progression. I only wish that my uro had prescribed Pentox at the onset, if he had, I am confident I would not be where I am today. - George
George,
I had a few flair-ups after initial progression. ALC seemed to control them. As of late I have done little that is Peyronies Disease related and I still have no flare-ups. In view of this and since it is typical for painful flair-ups to subside (at least for long periods of time). How can you be sure the lack of flair-ups is not just the normal course of Peyronies Disease? As you recall when doing surveys of treatment effectiveness it is generally agreed that pain is not a valid indication of treatment effectiveness since it always resolves. We usually measure success of VI, topical Verapamil, etc as objective improvement in deformity.
Hawk, You are very eloquently presented the "common wisdom" regarding Peyronie's. This is the very "common wisom" that has been traditionally applied by the medical establishment for generation. The end result of that common wisdom is "just leave it alone and it will eventually resolve ... and take some vitamin E and that will make you feel better about it". It is the pursuit of this "common wisdom" in terms of treatment that has left us in the predicament we are today. It is a fatalistic approach that says if we can't fix it we might as well just resign ourselves to letting it run its course.
I can not express to you how much I disagree with that "common wisdom" and thus with your statement. We REALLY need to quit dreaming about fixing the damage and start concentrating on what we can do well which is to stop the progression in its tracks with the tools we have available. And we need to start being more concerned about cranking down on the pain as well which is indicative of active acute destructive inflammation. The tools for this ARE available NOW and they are well known and YES they do include ALC. ACL "seemed" to cure my pain and when I had to stop taking ALC it "seemed" to come back. This mentality reflects the general attitude in the medical profession that pain is somehow subjective and all in the head of the sufferer. That is patently absurd. And your contention that anything that does not result in improvement in deformity is somehow valueless is ABSURD, OK? It is like saying we should not prescribe anti-virals to HIV sufferers since they will not eliminate the disease. The challenge in the face of a lack of a cure is to halt progression and limit suffering and to contend otherwise is illogical. And illogical is precisely the term to describe how the medical profession has approached this disease for generations. - George
The point George is that pain is not a great indicator of progression if it resolves spontaneously - at least when it comes to measuring efficacy.
The only way to resolve this is with blinded placebo controlled studies. But even those ignore biochemical individuality. I may overexpress TGF bets; you may degrade collage inadequately due to a vitamin deficiency (or not). And so on.
Until we find ways to characterize the illness for different men, and to put them into at least broad categories (autoimmune, vitamin deficiency, too many genetic modifiers of TGF beta etc), we will not be able to create thoughtful treatment strategies.
We are left to doing it by trial and error.
Tim
George,
I have inflammation, plaque, hardening, whatever you want to call it, below the head of my penis on the shaft. This was injury induced during intercourse and happened 5 weeks ago? are you recommending I get on pentox to go along with my VI? I do not have curvature issues, but still having painful erections.
In response to the latest posts, I can only say that if I had it to do over again knowing what I know now, I would want to get on serious anti-inflammatories such as Pentox and to get my Vitamin D levels in order immediately. Actually there were people on this very forum who were encouraging me to get going with Pentox earlier on in the process and I was hard headed and tried to deal with it by using supplements. But I really do think the urologists should attempt to use Pentox initially rather than wait to see if things get worse, which I suspect they often do. I think this disease should be taken much more seriously by the docs and treated much more aggressively. But this is just my opinion as a patient. I think we are entirely to focused on finding a cure to the exclusion of identifying and implementing reliable strategies to halt progression. - George
Quote from: HealthDay
Blood-Sugar Spikes Send Testosterone Levels Down (http://www.healthday.com/Article.asp?AID=628055)
The researchers found that, regardless of whether the men had diabetes or not, blood levels of testosterone dropped by as much as 25 percent after they drank the sugary drink. This trend continued for more than two hours after the glucose was ingested. In fact, 15 percent of the 66 men with normal testosterone levels before the test had low testosterone ("hypogonadism") at some point during the test.
I think Tim has summed it up well. It's very difficult to tell whether or how much a regime has helped because untreated peyronies pain tends to over time. That's not to say that all personal observations are wrong by default. If we come across treatments which appear to significantly reduce pain (hence possibly reduce inflammation) in a significant number of individuals, it's something that demands our attention. Sadly, I'm not convinced that anything out there right now has a very dramatic and sudden effect on inflammation in this regard for the majority of individuals. Pentox is probably the closest we have to it though. A good diet doesn't hurt either.
As a result many people try to stick to a core of oral treatments which may be helpful to them. That's the best we can do right now in detailing treatments that target inflammation and/or fibrosis (aside from exploring new treatments as some are doing here - something I wholeheartedly support). We know that pentox is useful in related disorders and very likely peyronies, we know that wounds use up more vitamin D and that it may reduce inflammation, so there is logic to using that. It's incredibly difficult to know how much these treatments actually help though because 1) I suspect that the majority of peyronies sufferers STILL don't ever use anything other than Vitamin E, so we're trend setters and the data isn't available 2) As pointed out by George many people begin treatment at a relatively late stage of peyronies and as suchhave to contend with dealing with significant existing fibrosis, rather than attempting to pre-emp its development.
What we do know is that this condition typically takes a while to stablise even in what I'd class as long term sufferers. That's a negative for some, but a potential window of opportunity too. Long term use of oral treatments (pentox, l-carnitine, acl, vit d) may in some way tip the balance and allow the body to better deal with peyronies and reduce its severity. In combination with the VED, and maybe light traction, in many individuals a bad situaion may become something that is managable. And when I say long term, I'm thinking more of years rather than weeks or months.
Looking at my previous post, I really need to learn how to write short messages :).
YoungOne - In your shoes I'd defeinitely ask your doctor for pentox. You haven't had this condition for long, so there's possibly scope for it to slow any additional plaque development, or maybe even reduce what is already present. Take this to your urogolist: https://www.peyroniesforum.net/index.php/topic,772.0.html .
Fred22 - Three years with pain and your doctor will only prescribe Vitamin E. What exactly is he waiting to occur? In my opinion he's not doing his job properly. Have you approached with with studies that it can be useful in treating peyronies? Maybe that will switch on the bulb in his head. Have you tried the VED? Maybe it will tip the balance. Exercise, healthy eating. All important too.
slowandsteady - Good call on pycnogenol. I believe that it has been mentioned a time of two but the studies you quoted are enlightening. I think i'll look into getting hold of this.
George - Thanks for the Blood-Sugar Spikes Send Testosterone Levels Down (http://www.healthday.com/Article.asp?AID=628055) link. A very interesting finding. Have any studies been undertaken relating to testosterone levels folowing a meal which isn't especially high in glucose?
I certainly agree that the pycnogenol thingy is fascinating. Its like pycnogenol and L-Arg are uniquely synergistic. This could be a really useful piece of information. Thanks s&s! - George
Another study suggests that "Pycnogenol® (pic-noj-en-all) delays the uptake of glucose from a meal 190 times more than prescription medications, preventing the typical high-glucose peak in the blood stream after a meal. The study revealed the pine bark is more potent for suppressing carbohydrate absorption in diabetes than synthetic prescription alpha-glucosidase inhibitors such as Precose®.", so this is probably one mechanism by which it reduces inflammation - http://www.medicalnewstoday.com/articles/62607.php
For those in the UK it can be purchased at popular highstreet chain Holland & Barrett:
http://www.hollandandbarrett.com/pages/product_detail.asp?pid=239&searchterm=pycnogenol&rdcnt=1
as can l-arginine and Resveratrol, which is sometimes included with Pycnogenol supplements and also fights inflammation
The l-arginine is dirt cheap (£1.99 for 50 capsules). The pycnogenol is more pricey though (£10.99 for 30 30mg pills) so shopping around might be in order.
Pycnogenol is a trademarked formula. Whenever you see different vendors selling it, they are just buying it from the same manufacturer, so I wouldn't expect a lot of price variation.
Wow, when taken with l-arginine, it certainly does result in daily morning erections (http://sexuality.about.com/od/malesexualanatomy/a/morning_erectio.htm). But hey, maybe that's how it's supposed to be.
s&s
newguy- thanks for help and the link
george- thanks for your help as well
In fact, thanks to everyone who posts on here....great resource.
This definitive and exhaustive article details the great potential and the inherent risks of therapy with Chang Shan and its synthetic analogs:
Quote from: PubMedUK
Antimalarial Activities and Therapeutic Properties of Febrifugine Analogs (http://ukpmc.ac.uk/articlerender.cgi?artid=370525) ( <- LINK TO COMPLETE ARTICLE )
Febrifugine is the active principal isolated 50 years ago from the Chinese herb chang shan (Dichroa febrifuga Lour), which has been used as an antimalarial in Chinese traditional medicine for more than 2,000 years. However, intensive study of the properties of febrifugine has been hindered for decades due to its side effects. We report new findings on the effects of febrifugine analogs compared with those of febrifugine extracted from the dry roots of D. febrifuga.
Recently, halofuginone has been identified as a specific inhibitor of collagen type I gene expression (5, 25). The rediscovery of halofuginone has led to intensive preclinical studies and rapid development of the drug for the control of many diseases involved in excessive collagen synthesis, such as pulmonary fibrosis (21), liver cirrhosis (24), peritendinous fibrous adhesions after surgery (22), wound repair (1), and injury-induced arterial intimal hyperplasia (18). A phase I clinical trial of halofuginone for the treatment of scleroderma is under way, and a phase II clinical trial of Tempostatin (halofuginone hydrobromide) for the treatment of recurring bladder carcinoma has just started in the United Kingdom. The National Cancer Institute selected halofuginone for a rapid development program for cancer therapy (26).
Note that the key nasty side effect of Chang Shan is its to propensity to cause gastric irritation and eventually gastro-intestinal hemorage at excessive doses. - George
Good stuff George. As of yesterday, I have added resverstrol and pycnogenol. There appears to be better science pointing towards helpful properties than many of my current oral treatments. I'm pleased that pycnogenol and l-arginine appear to be synergistic.
I am considering adding astragaloside and halofuginone. Maybe tongkat ali (longifolia jack) to boost testosterone, though studies are a bit thin on the ground. At which time I think i'll have pretty much hit the ceiling on my oral treatments regime.
anybody has experience with forskolin. Any benefits for our condition??
Hello,
Please can someone message me on online source of Pentox/ Trental or a doctor who will prescribe it. I live in the UK. Thanks.
Bob
Bob -
Ideally, your post should be in the oral treatments section: https://www.peyroniesforum.net/index.php/topic,22.0.html
I added an online source that I currently use here:
https://www.peyroniesforum.net/index.php/topic,22.msg20066.html#msg20066 . It's a .co.uk site though it isn't actually based in the UK which means as well as being quite expensive, you will have to pay customs charges. The product looks authentic and is from one of the more trusted online site. However, I haven't had it tested, so it's still second best to being prescribed pentox.
I am in the same boat really and was unable to get hold on trental on the NHS. If anyone here was able to do so please let us know. Also, if anyone in the UK has access to it via a private doctor, can you let us know how much this costs you?
I'd very much appreciate any useful comments relating to these questions. Pentox is very cheap, and I'm effectively paying way over the odds for it.
Quote from: newguy on June 13, 2009, 07:05:34 PM
Looking at my previous post, I really need to learn how to write short messages :)
Fred22 - Three years with pain and your doctor will only prescribe Vitamin E. What exactly is he waiting to occur? In my opinion he's not doing his job properly. Have you approached with with studies that it can be useful in treating peyronies? Maybe that will switch on the bulb in his head. Have you tried the VED? Maybe it will tip the balance. Exercise, healthy eating. All important too.
I'm now on my second urologist. I went to the first one right after I develpoed the pain 3 years ago, and his response was "well, pain is a little unusual". No offer of any idea why I might be experiencing pain or what might be done for it. At the time I had not developed the curvature. When the curvature appeared I made an appointment with another board certified uro who's the chair of the Urology Dept. of University of Tennessee in Memphis. Thought at last I'd get some help. He diagnosed the Peyronies Disease and put me on vit. E and checked my PSA, which had spiked a bit from my last test. He was more concerned with the PSA than the Peyronies Disease (which I suppose is good since prostate cancer is nothing to play with). I went back to him in March and my PSA had gone down, but he still wants to see me again in August. I mentioned pentox for the Peyronies Disease, but he said it "wasn't in the literature". I have not bothered to show him the documents posted here, because I know what his response will be...the studies were not "scientifically conducted" (double blind, placebo, etc.) therefore, the results are not scientifically significant. He's a by the book research doctor and says that funding for research in Peyronies Disease is relatively nonexistant, especially for a state supported institution with dwindling revenues. He said all the research money goes to cancer and heart research since they're the big killer diseases.
Regarding the VED... I went through a 3 month back and forth with my health care provider (Cigna...in the business of NOT CARING!!). I was given a different story at each juncture as to whether they would pay or not until I just gave up, which, I'm sure, is what they wanted me to do. In May I went on Medicare with Cigna as my supplement. Medicare will pay for VED for ED, but it doesn't mention Peyronie's. I'm in the process now of initiating a dialogue with Medicare to see if they will help with the VED. If not I'm just going to purchase the Fitzz. I do eat a healthy diet and have been jogging and walking for exercise for years. Lately I have been a little lax in the exercise department, but plan on getting back into it soon. I just had a complete physical last Thursday and my bloodwork and urine were "perfect" according to the Drs. office. I take 400 to 800 IU vit. E and 2000 IU D3 a day plus 1200 mg fish oil. I've also been doing a little reading about Pycnogenal and it seems to show some promise. On another positive note, my pain has subsided the last 3 or 4 days. Hope it's not just a fluke.
Quote from: young25 on June 15, 2009, 10:16:18 AM
anybody has experience with forskolin. Any benefits for our condition??
Forskolin is a really great smooth muscle relaxant. It is very useful for bowel syndromes and urinary tract infections. I keep it on hand and use it as needed. I found little if any benefit for Peyronie's. Of all the supplements, the most useful for me in dealing with Peyronie's was Acetyl L Carnitine. - George
Quote from: George999 on June 15, 2009, 07:59:48 PM
Quote from: young25 on June 15, 2009, 10:16:18 AM
anybody has experience with forskolin. Any benefits for our condition??
Forskolin is a really great smooth muscle relaxant. It is very useful for bowel syndromes and urinary tract infections. I keep it on hand and use it as needed. I found little if any benefit for Peyronie's. Of all the supplements, the most useful for me in dealing with Peyronie's was Acetyl L Carnitine. - George
Thanks George,
Did you find any benefit for Erections?
George - I'm interested in trying Halofuginone. From browsing around, am I to assume that Chang Shan extract contains a high amount of it, or should I attempt to find a source of pure Halofuginone?
Thanks for the information Newguy. I'm based in the UK also. I'm sorry to say that it doesn't surprise me very much that the NHS won't prescribe Trental. Are there any private doctors in the UK with a progressive attitude towards treating Peyronie's disease?
Has anyone compared the product from inhousepharmacy with known genuine doctor prescribed Trental? Would anyone be willing to swap a foil strip of tablets for comparison?
Without having done detailed research it appears on the face of it that the actions of ALCarnitine and Pentox in increasing arterial blood supply are similar. I am already taking 1g ALC twice daily, is it safe to add 400mg twice daily Trental on top or should these products be used separately?
Quote from: young25 on June 15, 2009, 09:48:04 PM
Quote from: George999 on June 15, 2009, 07:59:48 PM
Quote from: young25 on June 15, 2009, 10:16:18 AM
anybody has experience with forskolin. Any benefits for our condition??
Forskolin is a really great smooth muscle relaxant. It is very useful for bowel syndromes and urinary tract infections. I keep it on hand and use it as needed. I found little if any benefit for Peyronie's. Of all the supplements, the most useful for me in dealing with Peyronie's was Acetyl L Carnitine. - George
Thanks George,
Did you find any benefit for Erections?
Not really. As I said, Its a great treatment for cases in which smooth muscle relaxation is helpful, but that does not apply to either Peyronie's or ED. You could try taking it if you like. The only concern with taking Forskolin is that it is known to activate and accelerate prostate cancer. That is one reason I am very careful to take it ONLY AS NEEDED. - George
Quote from: newguy on June 16, 2009, 04:11:51 AM
George - I'm interested in trying Halofuginone. From browsing around, am I to assume that Chang Shan extract contains a high amount of it, or should I attempt to find a source of pure Halofuginone?
Unfortunately, Chang Shan contains NO halofuginone. Chang Shan contains Febrifugine. Halofuginone is a synthetic drug that is basically created by artificially modifying Febrifugine. Febrifugine is as effective against collagen as Halofuginone, but is plagued by side-effects and toxicity. Halofuginone was created to eliminate these side effects and toxic qualities while retaining full therapeutic benefits. I have Chang Shan ordered and am planning on giving it a go. But I will need to be very cautious not to get too much of it. I will let everybody know if I see any benefits. In the mean time, there is a whole new industry underway in attempting to exploit alternative channels in treating both autoimmune issues such as Peyronie's AND Cancer because both are dependent on many of the same malfunctioning alternative biological pathways.
Here are just two examples:
Quote from: Genetic Engineering and Biotech News
Idera Pharmaceuticals Announces Presentations of Preclinical Data on Modulation of Toll-like Receptors 3, 7, and 9 through Antisense (http://www.genengnews.com/news/bnitem.aspx?name=5632410) ( <-- LINK TO FULL ARTICLE )
"We have combined our pioneering work in antisense technology and second-generation antisense chemistry with the insights we have gained from our recent work in creating nucleic acid-based agonists and antagonists of TLRs, to create TLR antisense candidates that can inhibit expression of specific TLRs," said Sudhir Agrawal, D. Phil., President, Chief Executive Officer and Chief Scientific Officer. "In the preclinical studies presented at FOCIS, our TLR antisense candidates down regulated expression of the targeted TLR and the subsequent immune responses through an antisense mechanism of action. As a result, we believe that our TLR antisense candidates have potential therapeutic applications in autoimmune and inflammatory diseases."
Quote from: PRNewswire
Proteolix, Inc. Drug Candidate, PR-957, Prevents Disease Progression in Rheumatoid Arthritis Models by Selective Inhibition of the Immunoproteasome (http://news.prnewswire.com/DisplayReleaseContent.aspx?ACCT=104&STORY=/www/story/06-15-2009/0005043752&EDATE=) ( <--LINK TO FULL ARTICLE )
PR-957 is the first highly selective, small molecule inhibitor of the immunoproteasome. The proteasome is an intracellular complex present in most cells that mediates the degradation of intracellular proteins, including key components of pathways that contribute to cancer cell growth and immune signaling. It is a proven and validated target for therapeutic intervention in oncology, but the side effect profiles of existing inhibitors have restricted the potential of this target for therapeutic intervention in autoimmune diseases. However, a specific form of the proteasome, known as the immunoproteasome, is found in many cells of the immune system. PR-957 selectively targets a subunit of the immunoproteasome, known as LMP7. Inhibition of this subunit results in a decrease of the immune cell signaling cascade and a halt of the production of cytokines associated with autoimmune inflammation, without affecting proteasome function in non-immune cells. As a consequence, PR-957 induces an anti-inflammatory response at doses less than one tenth the Maximum Tolerated Dose (MTD). In contrast, nonselective inhibitors, such as bortezomib and carfilzomib, induce anti-inflammatory responses only at or near their MTD. These findings also underline the key role played by the immunoproteasome in development of the inflammatory process.
There is thus a whole new range of treatments coming and many of them are fasttracked because of their anti-cancer capabilities. They will likely be rigorously safety tested and available for off label application for the treatment of a wide range of autoimmune syndromes including Peyronie's within a few years. - George
George - Thanks for being willing to try this out. Is anyone else planning on taking it? If people have good experiences with it, I suppose there is potential for trying to get hold of halofuginone somehow and getting it tested to ensure that we have the real deal. Compared to many treatments after reading the research, I feel that there is potential here. Fingers crossed.
i have got hold of pycnogenol and I already have L-arginine in stack.. I am planning to start the protocol today 30 mg pycnogenol & 500 mg argnine.. In a week I will double the amount of both... but before I start I read on the internet that pycnogenol helps in collagen synthesis.. Can anybody clarify whether it will be beneficial or it has a potential to worsen peyronies ??? ???
PS: Google keywords to search pycnogenol collagen
I'm not quite so worried about pycnogenol and collagen.
- Pycnogenol helps with varicose veins (people with varicose veins have a decreased ability to break down fibrin), and it seems to help with 'chronic veinous insufficiency'. I wonder whether relaxing the blood vessels allows the body's repair mechanisms to work better.
- In Variations in C-reactive protein, plasma free radicals and fibrinogen values in patients with osteoarthritis treated with Pycnogenol (PMID 19017467 (http://pubmed.gov/19017467)), "Fibrinogen levels were found to be lowered to 62.8% of initial values (P < 0.05) in response to Pycnogenol". Fibrinogen is the precursor to fibrin.
s&s
Thanks S&S,
I already popped my pill yesterday... tho started with less dose of arginine will be increasing it to 1 mg today and double frm next week.
Question,
I've been taking on a daily basis the following amounts for the PAV cocktail:
Pentox: 1000mg (2.5 pills)
L-Arginine: 3g
Viagra: 25mg (0.25 pill)
I'm thinking of taking the 25mg of viagra every other day instead of daily.
So, my question is if this is "alright", according to anyone's understanding of the PAV cocktail regiment? Actually, if anyone can explain the "workings" of the PAV cocktail, that would also be greatly appreciated.
I've taken the viagra every other day a few times and I noticed that I still get daytime and nocturnal erections on the viagra "missed" day. Although I'm trying to treat my condition aggressively, I'm trying to avoid any "unnecessary" intake of viagra (or other supplements/prescriptions).
Besides the PAV cocktail, I'm also taking ALC (2.5g) , Vitamin E (400mg) , and Vitamin D3 (2,000) on a daily basis, along with the VED physical therapy.
thanks.
CF
You mean 3g of L-Arginine, 3,000mg. I currently take 3,000mg of L-Arginine daily and I am going to ask my uro for pentox tomorrow. Are these bad to take in combination???? Since my understanding is that both increase blood flow/circulation.
Edited to remove a quotation that quoted an entire post in violation of forum rules
Hawk
YoungOne,
you're assumption is right; I'm taking 3 g of L-arginine...I corrected my post.
CF
went in for second round of verapamil injections today. did it with out lidocaine. but actually wasnt too bad.
my goal for the visit was pentox script. I had documents from the PDS resources but as soon as i said pentox he said I am not writing a script for that. I think these doctors arent willing to throw their name down on a script that they dont believe in for doctoral reasons, especially if they are working with other uros at a clinic that do not do it as well. I am going to beg my general practicioner for it.
One more question......what do you guys think.....since i have a couple miniscule breaks in the skin from the injections this morning, should i maybe crush a vitamin e pill and rub the fluid on my plaque. or is this stupid idead?
I got the same response, so I ended up paying through the teeth to buy it online. Not ideal really, but that's the way it is I guess. It's a shame a urologist would be closedminded to what is essentially a safe drug that likely offers some benefit. I really don't see what the issue is. To refuse to even look at the resources you brought along is pretty rude if you ask me. Like you say though, maybe there's an element of peer pressure.
Quote from: newguy on June 19, 2009, 11:09:11 AM
I got the same response, so I ended up paying through the teeth to buy it online.
The first uro I saw refused to prescribe Pentox because he said the FDA had not endorsed its use for Peyronies Disease. He did glance at the Pentox information I brought with me from this forum to the visit and he was aware of Dr. Lue and said he believed he was a very qualified doctor to endorse the use of Pentox.
However, he was considerate enough to refer me to another uro who he believed was more "knowledgeable" about the latest efforts to treat Peyronies Disease and one that he believed would prescribe Pentox. I saw the uro he referred me to and the second uro prescribed me Pentox.
CF
YoungOne, If you tell us what part of the world you are in, someone here might be able to suggest a uro who WILL be willing to prescribe Pentox for you AFTER you finish with the verapamil treatments in order to make sure the Peyronie's doesn't come back or worsen. I would be very cautious about taking Pentox at the same time as the injections since it can cause bleeding and you would not want bleeding issues while getting the injections. - George
CF- Thanks for your input. My GP and urologist experiences in the UK have all been through the NHS. The National Health Service on the whole does work, but funds are alloted to various areas and as such, and its all rather regimented. I had no luck getting pentox and strangely the most accepted treatment appears to be Extracorporeal shockwave therapy. I potentially could give that a go, but there isn't much enthusiasm for it here, so I have doubts about its effectiveness. If I stumbled across another UK user who does get the treatment on the NHS, it would be somewhat heartening. It's not impossible, but it all very much depends who your GP is and the urologist he refers you to.It's possible to go private and I did look into that, but private healthcare plans are not all that commonplace here, so i'd have to pay for the drug directly anyway.
If I was able to get pentox on the NHS it would cost me just the price of a prescription, whiich is around £6 i think. So next to nothing. I might try to connect with more UK peyronies sufferers . I'm not sure how yet, but where there's a will there's a way. It might help us try to oush on understanding of the disease here.
I have tried to find out what government policy is concerning peyronie's. I found this note from an exchange in parliament in 2007, but not much else
QuotePeyronie's Disease: Medical Treatments
Mr. Hancock: To ask the Secretary of State for Health what advice she has provided to NHS trusts on the recommended treatment for Peyronie's disease; [126255]
(2) which NHS trusts will provide implants as treatment for Peyronie's disease. [126256]
Mr. Ivan Lewis: The Department has not provided national health service trusts with advice on the treatment of Peyronie's disease. Treatment options will depend on the severity of the disease, and can include the insertion of an implant for the most severe cases.
Information on which trusts provide implants as treatment for Peyronie's disease is not collected.
study demonstrating use of Pentox+arginine+ Via
http://repositories.cdlib.org/cgi/viewcontent.cgi?article=3908&context=postprints
Newguy
I got a private prescription initially which cost £90 for 3 months and then followed up with my GP who gave me a regular prescription. Tamoxifen is the drug of choice with the NHS.
Quote from: UK on June 19, 2009, 02:00:21 PM
Newguy
I got a private prescription initially which cost £90 for 3 months and then followed up with my GP who gave me a regular prescription. Tamoxifen is the drug of choice with the NHS.
Great! Do you think it was helpful for you to get a private prescription first? Do you think that made your request more credible and logical? If so, maybe that is the route I should go. Was your GP quite open to suggestions and understanding? It seems that way. Thanks for this info UK, I was given the impression that it wasn't an option. I can potentially change my GP if he refuses to help.
young25 - Thanks for the link :). Even though its a few years old, I hadn't seen it before!
I don't know if this study about astragaloside IV has been mentioned yet (PMID 19429320 (http://pubmed.gov/19429320)):
Quote[...]Antifibrotic activities of Astragalus membranaceus have been extensively proved. [...] The levels of transforming growth factor-beta(1) (TGF-beta(1)) in serum and expression in liver were significantly decreased by astragaloside IV. Collagen synthesis and proliferation were significantly inhibited by astragaloside IV (1.5, 3.0, 6.0, 12.0 and 24.0 mg L(-1)) in HSCs. CONCLUSION: The results showed that astragaloside IV displays antifibrotic effects in rats induced by PS, the mechanism by which might be associated with its inhibitory effects on collagen synthesis and proliferation in HSCs[hepatic stellate cells].
Inhibiting TGFbeta1 and collagen synthesis and proliferation sound promising.
From this imminst.org post (http://www.imminst.org/forum/index.php?showtopic=19921&view=findpost&p=264253) in a long astragaloside thread:
QuoteIt appears EDTA tken with Astragaloside IV increases absorption by 30 fold, while 0.1% chitosan increases absorption by over 60 fold.
s&s
There's certainly some very interesting studies appearing for both astragaloside IV and Resveratrol. Astragaloside IV is all the rage on anti-aging forums, due to its possible stablising/lengthening of telomeres. That's neither here nor there to me, but these other studies are rather interesting and provide us with an opportunity to try somethiung cutting edge to help with our condiition. Maybe it won't be helpful, but I'm willing to give it a go.
I sent off for some from revgenetics yesterday. Worth a shot. It's likely take a couple of weeks to get here since I'm in the UK.
I upped my dose of l-arginine to 4 grams instead of 3 last night and experienced some pretty intense (probably amplified due to my recent lack of sleep) side effects from the lower blood pressure, I was wondering if that one episode might have had any serious effects on my health? I haven't been taking my Vit-E because I don't like the way it makes me feel. Anyone else have any bad experiences with l-arginine?
I seriously doubt that whatever occured will have any real negative impact on your health. Maybe it's not even related to your l-arginine intake? To be on the safe side though, or if you fear this could happen again, maybe it would be sensible to scale it back.
I rarely have any adverse effects from any drugs. Viagra made me feel kind of light headed the first couple of times I took it, but then that went away. Niacin gave me a serious niacin flush and evelated heart rate the first time I took it, but again that went away after I'd taken it a couple of times.
L-arginine has never given me problems but I don't ever recall taking over a couple of grams a day, so maybe others will chime in with their experiences.
Quote from: RichB on June 20, 2009, 01:11:59 PM
I haven't been taking my Vit-E because I don't like the way it makes me feel.
RichB,
What side effects are you attributing to the vit. E and are you sure it's the vit. E that is causing them?
Fred
I had a quick look at resveratrol and collagen and fibrosis.
In
Resveratrol inhibits AGEs-induced proliferation and collagen synthesis activity in vascular smooth muscle cells from stroke-prone spontaneously hypertensive rats (PMID 10903896 (http://pubmed.gov/10903896)):
QuoteResveratrol significantly inhibited AGEs-induced TGF-β1 mRNA increases in a dose-dependent manner.
In
Effect of resveratrol on myocardial fibrosis in mice with chronic viral myocarditis (PMID 19374815 (http://pubmed.gov/19374815)):
Quote[The mice] were randomly assigned to 4 groups: untreated VMC, and low- (10 mg/kg), middle- (100 mg/kg) and high-dose (1 000 mg/kg) resveratrol-treated VMC (once daily, for 30 days). Ten mice which received neither Coxsackievirus B3 nor resveratrol treatment served as the control group. After 30 days of resveratrol treatment, the mice were sacrificed. Serum concentrations of collagenous pre-peptides (PINP, PICP and PIIINP) were assessed using ELISA. Hematoxylin-eosin staining, picrosirius red staining and circularly polarized light were used to examine the histochemistry of myocardial collagen. RESULTS: The myocardial collagen volume fraction in the high-dose (0.74+/-0.19) and the middle-dose (1.07+/-0.12) resveratrol-treated VMC groups was significantly lower than that in the untreated VMC (2.33+/-0.18) and the low-dose resveratrol-treated VMC (2.17+/-0.19) groups (P<0.05). Compared with the untreated VMC group, serum concentrations of PICP and PIIINP in the high-dose and the middle-dose resveratrol-treated VMC groups were significantly reduced (P<0.05), while PINP concentrations increased significantly (P<0.05). CONCLUSIONS: Resveratrol can inhibit hyperplasia of myocardial collagen in the mouse model of chronic VMC, acting as an effective anti-fibrotic agent in the myocardium.
The lowest effective dose was 100mg/kg. Scaling by a factor of 0.13 (http://www.imminst.org/forum/index.php?showtopic=30480&view=findpost&p=326916) would give 13mg/kg for a human (a 150 pound guy would get 886 mg -- easily doable). Cool.
In
A rapid and sensitive screening system for human type I collagen with the aim of discovering potent anti-aging or anti-fibrotic compounds (PMID 18810249 (http://pubmed.gov/18810249)):
QuoteLactic acid, EGCG, resveratrol, and retinol that can inhibit collagen synthesis effectively in a dose-dependent manner may be used for anti-fibrosis treatment purposes.
EGCG is grean tea extract. I've posted on that one before. Retinol is vitamin A.
One more study,
Resveratrol prevents fibrosis, NF-kappaB activation and TGF-beta increases induced by chronic CCl4 treatment in rats(PMID 17429801 (http://pubmed.gov/17429801)):
QuoteResveratrol is a nonflavonoid polyphenol with antioxidant, anticancer and antiinflammatory properties. Moreover, it has been reported that this compound inhibits NF-kappaB, which regulates the transcription of several genes including cytokines such as the profibrogenic TGF-beta. ... One of the most prominent effects was on fibrosis which increased near 5-fold (hydroxyproline) in the CCl(4) group; resveratrol preserved the content of collagen. These results were corroborated by histopathology. To elucidate the antifibrogenic mechanism of resveratrol, the activation of NF-kappaB and the production of TGF-beta were measured; in both cases CCl(4) increased them and resveratrol abolished them; however, changes in NF-kappaB were modest and did not reach statistical significance, while the increase in TGF-beta was about three fold and resveratrol decreased it under control values. Together, the present results indicate that resveratrol possesses a strong antifibrogenic effect at least in the CCl(4) model of cirrhosis. Moreover, the action mechanism is probably associated with its ability to reduce NF-kappaB activation and TGF-beta content.
For me, I'm looking at astragaloside IV/chitosan at night and transresveratrol/soy lecithin after breakfast.
s&s
slowandsteady - Great research. I already have some low dose resveratrol , but have will be upping my doseage as well as taking Astragaloside IV when it arrives. A powerful combination.
Quote from: newguy on June 21, 2009, 01:56:04 PM
slowandsteady - Great research. I already have some low dose resveratrol , but have will be upping my doseage as well as taking Astragaloside IV when it arrives. A powerful combination.
Thanks. In the astragaloside thread at imminst.org, the consensus seems to be to either cycle resveratrol and astagaloside IV to different parts of the day or to different weeks. Their concern is to lengthen telomeres for life extension, as opposed to the antifibrosis angle.
Is it bad to take pentox and l-arginine at the same time? given that they both encourage blood flow.
Doctors actually instruct their patients to take Pentox and L-Arg together. Increased bloodflow is not harmful therefore no one worries about it. Only those effects that are harmful are monitored. For example, Pentox can cause bleeding. Thus we would be concerned about Pentox + Vitamin E for example, since both can cause bleeding. However, much of the Vitamin E bleeding effect can be canceled with Vitamin K, so there are ways to deal with even these things many times. Pentox and L-Arg together are not a problem. - George
Quote from: YoungOne on June 22, 2009, 01:12:25 AM
Is it bad to take pentox and l-arginine at the same time? given that they both encourage blood flow.
I've been wondering the same thing. My uro prescribed pentox and cialis, but when I called and asked if I could take arginine too, he told me to go see my general practice doctor to see if it is ok. I haven't done that yet, and I'm not sure if it's even necessary. Still, the fact that he didn't just say it's ok did cause me some concern. But I'm also wondering if adding arginine to pentox and cialis is even going to make a difference - or is that just overload? I mean, if the pentox and cialis aren't going to work, is adding arginine going to make a big difference? I don't know the answers, but maybe someone here does. Thanks, Joe.
Studies on rats with induced peyronies like conditions have success using pentox, l-arginine and viagra. In humans the results are not typically so impressive, but maybe this is because different mechanisms are at work, or due to the time between developing the condition and taking the PAV cocktail. That's not to say that it isn't of use. Along with VED use, or probably the most proactive combo a person can take. I don't recall any negative statements regarding the use of them together. The same combo has been used in priapism in humans and now in peyronie's disease. Again, I don't think taking them together is an issue.
George is likely right to point out that a pentox and Vitamin E combo has more scope for causing bleeding, but even they have been used together in many human studies. If you are perfectly fit and healthy, I don't think it's something you should be too concerned about unless you have a particular condition or set of circumstance which make it a bad idea.
Quote from: George999 on June 22, 2009, 10:53:22 AM
Doctors actually instruct their patients to take Pentox and L-Arg together.
My uro prescribed me Pentox after I told him I was taking L-arginine, ALC, and Vitamin E (only 400 mg) daily.
I can't personally "vouch" for the following web site nor it's information, but an Ohio uro stated that the use of Pentox, arginine, alc, and cialis is an "optimal" combination:
http://en.allexperts.com/q/Urology-Male-issues-989/2009/1/curvature-pentoxyfilline.htm
I found the link while I was searching for Pentox info...I posted the link in the "urologists" section for those near Ohio.
I'm using viagra, but I'm going to inquire about switching to Cialis.
CF
Reading his answer to the stated question, and his website, this guy is on the ball!
Tim
Out of the various enzymes that get mentioned (nattokinase, serrapeptase, bromelain, papain, catalase, etc.), which have people found to be the most helpful?
s&s
Quote from: Tim468 on June 24, 2009, 08:23:54 AM
Reading his answer to the stated question, and his website, this guy is on the ball!
Tim
His answer leads to the reasonable conclusion that his source is Tim, Hawk, George, Old Man, Angus, newguy, etc...
Tim, I think you should consider adding Dr. Leslie's Peyronie's page to the resource documents. It is exhaustive and excellent in my opinion. In addition, ANYONE in the Ohio neighborhood should take note of this guy! - George
http://www.drleslie.org/peyronies.html (http://www.drleslie.org/peyronies.html)
Anyone in Ohio looking for a Peyonie's savvy doc?
http://www.drleslie.org/physician.shtml (http://www.drleslie.org/physician.shtml)
Someone should see if he could post this website along with the others he had listed.
Curcumin has worked pretty well for me in relieving plaque inflammation. I take the LEF product (http://www.iherb.com/Life-Extension-Super-BIO-Curcumin-400-mg-60-Veggie-Caps/15211?at=0) but open the capsules and mix the contents directly into an oil (coconut milk, coconut oil, or olive oil). The taste is fairly mild. I was away over the weekend and curcumin was the only thing I took with me, giving me a chance to test which of my supplements was responsible.
PMID 19457704 (http://pubmed.gov/19457704):
Quote
Connective tissue growth factor (CTGF) is associated with the onset and progression of fibrosis in many human tissues. Areca nut (AN) chewing is the most important etiological factor in the pathogenesis of oral submucous fibrosis (OSF). We immunohistochemically examined the expression of CTGF protein in 20 cases of OSF and found positive CTGF staining in fibroblasts and endothelial cells in all cases. Western blot analysis showed that arecoline, a main alkaloid found in AN, stimulated CTGF synthesis in a dose- and time-dependent manner in buccal mucosal fibroblasts. Constitutive overexpression of CTGF during AN chewing may enhance the fibrotic activity in OSF and play a role in the pathogenesis of OSF. Pretreatment with NF-kappaB inhibitor Bay 11-7082, JNK inhibitor SP600125, p38 MAPK inhibitor SB203580 and antioxidant N-acetyl-l-cysteine, but not ERK inhibitor PD98059, significantly reduced arecoline-induced CTGF synthesis. Furthermore, curcumin completely inhibited arecoline-induced CTGF synthesis and the inhibition is dose-dependent. These results indicated that arecoline-induced CTGF synthesis was mediated by ROS, NF-kappaB, JNK, P38 MAPK pathways and curcumin could be a useful agent in controlling OSF.
Study on antifibrotic effects of curcumin in rat hepatic stellate cells (PMID 19152370 (http://pubmed.gov/19152370)):
QuoteSuppression of activation or fibrogenesis and induction of apoptosis, in hepatic stellate cells (HSCs) have been proposed as therapeutic strategies against liver fibrosis. Curcumin, an active compound isolated from yellow curry pigment of turmeric (Curcuma longa Linn), has been demonstrated to be an effective anti-inflammatory and antioxidant compound. In this study, we investigated the in vitro antifibrogenic effects of curcumin on HSCs at the concentration range of (1-40 microM). A cell line of rat HSCs (HSC-T6) was stimulated with transforming growth factor-beta1 (TGF-beta1). The inhibitory effects of curcumin (1.25 approximately 10 microM) on fibrosis-related markers including alpha-smooth muscle actin (alpha-SMA) and collagen were assessed. In addition, the induction effects of curcumin (20 approximately 40 microM) on apoptosis in HSC-T6 cells were also assessed by Hoechst and propidium iodide stains. Curcumin (1.25 approximately 10 microM) concentration-dependently suppressed TGF-beta1-induced alpha-SMA expression and collagen deposition in HSC-T6 cells, without cytotoxicity. Whereas, higher concentrations of curcumin (20 approximately 40 microM) induced cell apoptosis and cytochrome c release in HSC-T6 cells. Our results suggest that curcumin exerted antifibrotic effects, possibly through two different mechanisms depending on its concentrations. At lower concentrations (1.25 approximately 10 microM), curcumin exerted antifibrogenic effects, whereas at higher concentrations (20 approximately 40 microM), curcumin exerted induction of apoptosis in HSCs.
It's interesting that the article "Peyronie's disease: an anatomically-based hypothesis and beyond (http://www.nature.com/ijir/journal/v14/n5/full/3900876a.html)" presents the hypothesis of Peyronie's as 'trapped inflammation' (trapped due to the physical structure of the tunica albuginea). One of the treatment strategies suggested by the author if this hypothesis is true would be using an "anti-cytokine agent such as anti-TGFb in the form of receptor blocker". Curcumin inhibits TGFb:
PMID 19539560 (http://pubmed.gov/19539560):
QuoteFurthermore, the mRNA expression of the cytokine profiles was assessed by quantitative reverse-transcription polymerase chain reaction (qRT-PCR), revealing the dramatic decrease of IL-17, TGF-beta, IL-6, IL-21, STAT3, and RORgammat expression in curcumin-treated groups and STAT3-phosphorylation also was inhibited.
s&s
This is interesting! I also believe that curcumin and oil (in my case cannola oil) have been helpful to me. I have been using them for some time now. - George
Certainly sounds worthy of trying. I've sent off for some from iherb. I had assumed that ordering from the states would always take ten days +, but apparently the order should arrive in day days or less at a reduced delivery charge. Great! Much cheaper than most UK supplements. I have no idea why we tend to be charged a premium for everything here!!
Lots of life extension type forums have concerns about the bioavailablity, but disolving it within oil certainly seems like the best way of making sure that the body makes the best use of the curcumin, well until more advanced formulas or methods are introduced. Many use it with black pepper, but that appears to have some drawbacks and can interfere with medications.
I just started taking Pentox (400mg, 3x daily) and have noticed that after the 2nd dosage (in the afternoon) that I feel a bit nauseous for several hours. I do take it with food as was recommended. Has this happened to anyone else? Will this go away? I notice I don't feel as bad with the 3rd dosage in the evening.
Regardless, I will probably power through for as long as I can. The Uro found a lot of abnormal tissue a few days ago (all along where I was injured) and I want to keep at this as long as possible. Nothing like a good challenge! ;)
Thanks and best to all,
Skjald
Skjaldborg - It appears to be a relatively common side effect, and I'd say that taking it with food certainly helps. For the first week or so I had the same reaction, but ever since, I've had no such problems regardless of whether or not I take pentox with food.
I have been taking 2g of acetyl-l-carnitine on an empty stomach in the morning (and was taking a gram before my Peyronies Disease surfaced). I notice that on days I don't take it, inflammation in an active plaque region I have is much reduced.
I don't know whether this is because it's just inflammatory by itself, or whether either taking a smaller dose or taking it with ALA would help. I might do some experiments since I have a built-in inflammation detector, unfortunately.
Some people at imminst.org have formed a consensus that Na R-ALA is the best form of ALA and should be taken in a 1:10 ratio with ALC for anti-aging benefits for the mitochondria. The rationale behind taking R-ALA with ALC varies from person to person (http://www.imminst.org/forum/ALCAR-RALA-t31067.html).
s&s
what dosage do you take on the curcumin?
Quote from: YoungOne on July 02, 2009, 12:57:02 PM
what dosage do you take on the curcumin?
I take two caps (http://www.iherb.com/Life-Extension-Super-BIO-Curcumin-400-mg-60-Veggie-Caps/15211?at=0) after breakfast and two after supper, opened and mixed into coconut oil.
The paper
In vitro anti-fibrotic activities of herbal compounds and herbs applied assays "to examine the anti-fibrotic activities of 21 compounds isolated from plants used in Chinese medicine and methanol extracts of 12 Chinese herbs" (PMID 19474275 (http://"http://pubmed.gov/19474275")).
QuoteResults. Three flavonoids (quercetin, baicalein and baicalin) and two non-flavonoids (salvianolic acid B and emodin) demonstrated anti-fibrotic activities in both total collagen accumulation and nodule formation assays. The remaining 16 compounds had little anti-fibrotic effect or were cytotoxic. The anti-fibrotic compounds suppressed collagen I expression at both mRNA and protein levels and also variably suppressed -smooth muscle actin expression and bromodeoxyuridine incorporation. Methanol extracts of Scutellaria baicalensis Georgi, Salvia miltiorrhiza Bunge and Rheum palmatum L., which are rich sources of baicalein, baicalin, salvianolic acid B and emodin, respectively, also showed in vitro anti-fibrotic activities.
...
As shown in Table 1, quercetin, baicalin, baicalein, salvianolic acid B (SAB) and emodin showed in vitro anti-fibrotic activities. Among these compounds, quercetin, baicalin and baicalein showed similar in vitro efficacy, suppressing total collagen deposition at concentrations ranging from 5 µM to 80 µM, with relatively low cytotoxicity (Figure 1A–L, respectively). SAB was more potent, demonstrating in vitro anti-fibrotic efficacy at concentrations as low as 1.75–14 µM, with little cytotoxicity (Figure 2A–D). Emodin showed a strong anti-fibrotic effect at concentrations around 20 µM, which were very close to concentrations that induced cell detachment, suggestive of cytotoxicity (Figure 2E–H). Interestingly, the three compounds that showed concentration-dependent in vitro anti-fibrotic efficacy share the same molecular core and belong to the family of flavonoids (Figure 1, Table 2). Both non-flavonoids showed poor dose dependence, but differed from each other in their range of non-toxic effective concentrations. SAB had a moderate efficacy but a wider effective concentration range (Figure 2A–D), while emodin was characterized by a potent anti-fibrotic effect observed at concentrations close to a toxic range (Figure 2E–H).
The New Chapter Chinese skullcap product (http://www.iherb.com/New-Chapter-Chinese-Skullcap-60-Vcaps/72?at=0) contains both baicalein and baicalin. Their Zyflamend product (http://www.iherb.com/New-Chapter-Zyflamend-EasyCaps-180-Softgel-Capsules/79?at=0) contains emodin from Polyganum cuspidatum (from which resveratrol is most often derived). Doctor's Best has a quercetin/bromelain product (http://www.iherb.com/Doctor-s-Best-Quercetin-Bromelain-180-Capsules/7?at=0). Planetary Herbals has a Salvia product (http://www.iherb.com/Planetary-Herbals-Salvia-with-MSV-60-1-020-mg-60-Tablets/1613?at=0).
s&s
slowandsteady - Thanks for the valuable post. I'm pleased that we are concentrating on untried (in peyronies anyway) anti fibrotic treatments. What is your entire supplement regimen at this time? Do you think that all of these treatments effectively combine to work against peyronies via many different mechanism? I wonder if the dosages are sufficient. What are your thoughts?
Things seem to be going well with my current program. Inflammation has been greatly reduced for me lately (nice not to be in pain), and plaque sizes seem to be shrinking. My routine has only been in its current form for a few weeks now, so I'm looking forward to any curvature changes.
My Peyronies Disease related supplements
Before breakfast1 tablet Jarrow NAC sustain
100mg pycnogenol with 2g l-arginine
Breakfast2 LEF biocurcumim mixed in oil
B vitamins
500mg of 99% transresveratrol mixed with soy lecithin
Supper2 LEF biocurcumim mixed in oil
oil soluble vitamins
- vitamin A from fermented cod liver oil
- vitamin K from high vitamin butter oil
- vitamin D, 7500 IU
- a full spectrum vitamin E
ALC was causing inflammation for me so I'm taking a break. I'm also taking a break from DMSO since the above list is working so well.
I can feel the improved blood flow with the pycnogenol/arginine combo in my penis, a bit like the sensation you get when a wound heals.
s&s
Edit: I forgot the resveratrol; removed afternoon NAC
Edit2: My regimen changes frequently
It's not a world away from my program, though I'm currently also taking Resveratrol and Astragaloside IV (and pentox and occasional viagra). I've only been taking Res and Astra for a week or so though.
I'm thinking of giving the anti-fibrotic compounds you mentioned earlier a try too. Hopefully in combination this program will have a positive effect. If I come to the conclusion that it doesn't add to the current program I'll drop them, but a month or two trial can't hurt.
For those taking Curcumim, I'm sure that mixing it with oil (such as coconut oil), increases its bioavailability somewhat, but you do think adding black pepper to the mix would increase it yet further? There seems to be an indication from some quarters that this could be the case. The downside being that, due to its effects on drug metabolism, it may interfere with certain medications.
Piperine appears to be something of a doube edged sword: http://www.delano.com/Articles/piperine-multiplies.html
See this post from grouppekurosawa.com (http://www.grouppekurosawa.com/blog/2005/11/curcumin-as-preventativetreatmentcure.htm), where they use curcumin in their cancer and cystic fibrosis protocols:
QuoteCurcumin is a true treatment for cystic fibrosis, but ONLY if its bioavailability can be increased.
Dissolving curcumin is warm coconut milk, heavy cream or 1/2 and 1/2 should tremendously increases the uptake of curcumin into the lymphatic system.
And in a post about using curcumin against pancreatic cancer:
QuoteFirst, there is inflammation, typified by the release of a host of pro-inflammatory hormones, followed by the release of collagen, resulting in fibrosis. Cancer makes its appearance only much later. [...] Unfortunately, if the injury is prolonged, chronic stellate cell activation leads to excessive pro-inflammatory hormone, and collagen release resulting in inflammation and fibrosis. [...] In order for liver or pancreatic tissues to regain function, the debris associated with inflammation, fibrosis and cancer MUST be removed.
Curcumin turns off overactive stellate cells and helps remove fibrosis debris in pancreatic cancer. To what extent these processes are similar with the fibrosis in Peyronies Disease I don't know, but it's something to think about. They use dosages of 3g or more with coconut milk (I've seen 5g twice daily for some things).
Some interesting curcumin bioavailability thoughts here:
QuoteThe cells lining the human small intestine contain several types of enzymes that convert curcumin into relatively inactive substances:
1.UGT (UDP-glucuronosyltransferase) enzymes;
2.sulfotransferase enzymes;
3.alcohol dehydrogenase;
4.p450 enzymes.
These same enzymes are also found in the liver and other tissues.
Among the available substances that inhibit these enzymes are:
1.Piperine (extracted from black pepper) inhibits UGT enzymes and p450 enzymes;
2.Quercetin (extracted from various plants) inhibits sulfotransferase enzymes;
3.Genistein (extracted from soy) inhibits alcohol dehydrogenase
http://www.delano.com/ReferenceArticles/curcumin-enhancement.html
QuoteCurcumin's full pharmacological potential is limited owing to its extremely limited water solubility. We report here that the water solubility of curcumin could be increased from 0.6 μg/ml to 7.4 μg/ml (12-fold increase) by the use of heat. Spectrophotometric (400–700 nm) and mass spectrometric profiling of the heat-extracted curcumin displays no significant heat-mediated disintegration of curcumin. Using an enzyme-linked immunosorbent assay that employed HNE modification of solid-phase antigen, we found that the heat-solubilized curcumin inhibited HNE-protein modification by 80%. Thus, inhibition of HNE modification may be a mechanism by which curcumin exerts its effect. We also report a simple assay to detect curcumin spectrophotometrically.
- http://www.liebertonline.com/doi/abs/10.1089/adt.2007.064
Thanks for those links. I'm off on vacation for the next week. During that time I'm going to try Chinese skullcap and quercetin to improve the bioavailability of curcumin. I'm increasing curcumin to 2g/day, taken with warm coconut milk.
s&s
I'd just like to mention, due to some recent troubles I have been having, please take care NOT to self medicate when using Ibuprofen and Vitamin E.
Essentially, taking large doses of each is a bad idea, especially at the same time. Your heart is a million times more important than your penis. Taking large doses of these drugs without professional supervision can damage it.
Quote from: RichB on July 12, 2009, 07:02:19 PM
I'd just like to mention, due to some recent troubles I have been having, please take care NOT to self medicate when using Ibuprofen and Vitamin E.
Essentially, taking large doses of each is a bad idea, especially at the same time. Your heart is a million times more important than your penis. Taking large doses of these drugs without professional supervision can damage it.
From the studies I have posted previously, I really don't think taking oral Ibuprofen is preferable to topical. This has been confirmed for knee injuries and as such when I hear about people taking oral ibuprofen for a year plus, as has happened before, I really think that's a bad idea, and not particulalrly healthy. What kind of vitamin E doses did you take?
QuoteBreakers of advanced glycation endproducts
Abstract:
Advanced glycation endproducts (AGEs) have been implicated in the pathogenesis of a variety of debilitating diseases such as diabetes, atherosclerosis, Alzheimer's and rheumatoid arthritis, as well as in the normal aging process. Seven compounds are here reported to be active in breaking AGE-protein cross-links. These compounds are 1,4-benzene-bis[4-methyleneaminophenoxyisobutyric acid] (LR102); 4-[(3,5-dichlorophenylureidophenoxyisobutyryl]-4-aminobenzoic acid (LR99); L-bis-[4-(4-chlorobenzamidophenoxyisobutyryl)cystine] (LR20); 4-(3,5-dichlorophenylureido)phenoxyisobutyryl-1-amidocyclohexane-1-carboxylic acid (LR23); methylene bis [4,4′-(2-chlorophenylureidophenoxyisobutyric acid)] (LR90); 5-aminosalicylic acid (5-ASA); and metformin. These compounds may be used to reverse the debilitating effects of those diseases in which AGEs are formed.
-
http://www.freepatentsonline.com/6787566.html
There are a few mentions on the page and it is called a "moderate AGE-breaker". I wonder if there's much evidence out there to support this claim...
Quote from: newguy on July 13, 2009, 11:19:57 AM
Quote from: RichB on July 12, 2009, 07:02:19 PM
I'd just like to mention, due to some recent troubles I have been having, please take care NOT to self medicate when using Ibuprofen and Vitamin E.
Essentially, taking large doses of each is a bad idea, especially at the same time. Your heart is a million times more important than your penis. Taking large doses of these drugs without professional supervision can damage it.
From the studies I have posted previously, I really don't think taking oral Ibuprofen is preferable to topical. This has been confirmed for knee injuries and as such when I hear about people taking oral ibuprofen for a year plus, as has happened before, I really think that's a bad idea, and not particulalrly healthy. What kind of vitamin E doses did you take?
I remember specifically taking at least 3 a day (with food) for a week or two and due to me feeling very horrible I stopped. I also took at least the maximum dosage of ibuprofen per day every 2 or so days. I was never on a strict regime, I kind of just took it on and off for psychological purposes. Even though I might have taken too much at points I do think that it helped me in the long run when I took the recommended dosage during times of heightened inflammation.
Rich - Yes, I'm sure it helps to some extent. If you feel the need to continue using it, I'd recommend giving the topical version a go.
Personally, I have just never felt comfortable with any of these over the counter pain and/or inflammation medications. Just look at all the controversy right now over Tylenol problems. I tend to think that aspirin is the safest of the lot and even it has issues. That is why I usually opt for something like Mangosteen juice instead, but that would not work for someone who is very limited as to sugars. As all of you know, I also have a problem with the sugar problem, but when faced with a choice, I take a bit of Mangosteen juice as opposed to an over the counter solution. There is also a book around that has been mentioned previously on this forum regarding food and inflammation. In fact there are several very good titles out these. Diet can help control inflammation probably as much as over the counter pills and it is less likely to cause side effects. - George
RichB:
Your inbox is full, so you should review the inbound PMs and delete enough so that you can receive more. Could not send an answer to the last one received from you. Thanks.
Old Man
Alrighty inbox cleared up, my apologies
I am just trying to post here.I am new.
Continuing the conversation on curcumin ...
Quote from: ScienceDaily
Vitamin D, Curcumin May Help Clear Amyloid Plaques Found In Alzheimer's Disease (http://www.sciencedaily.com/releases/2009/07/090715131558.htm)
ScienceDaily (July 16, 2009) — UCLA scientists and colleagues from UC Riverside and the Human BioMolecular Research Institute have found that a form of vitamin D, together with a chemical found in turmeric spice called curcumin, may help stimulate the immune system to clear the brain of amyloid beta, which forms the plaques considered the hallmark of Alzheimer's disease.
Researchers found that naturally occurring curcumin was not readily absorbed, that it tended to break down quickly before it could be utilized and that its potency level was low, making it less effective than the new synthetic curcuminoids.
"We think some of the novel synthetic compounds will get around the shortcomings of curcumin and improve the therapeutic efficacy," Cashman said.
"Since vitamin D and curcumin work differently with the immune system, we may find that a combination of the two or each used alone may be more effective — depending on the individual patient," he said.
Welcome James! - George
Thanks very much for the curcumin update George. It adds to the body of evidence suggesting that it's at least worth us sticking with it and seeing where it takes us. It's a shame we don't have access to versions with greater bioavailability but we at least have methods at our disposal geared towards increasing its effectiveness. Let's face it, if we sit on our laurels it will likely be a long time until substances such as this start appearing in peyronie's research (well 1 year +), so there's a good argument for being on the front line. It's especially interesting to see it mentioned alongside vitamin D.
Just a note to say that I think we cause a lot of confusion and false impressions when we use the word plaque. I am often guilty of this although I try to use the term scar tissue when I stop to think. It helps if we specify what we are really dealing with which in our case is a type of hypertropic collagen based scar tissue.
Plaque is a catch-all term for totally unrelated conditions. It only describes the physical dimensions (thin layer) or general descriptions (patch of abnormal material). It says nothing to describe what the specific material is or the underlying processes that cause each specific abnormal material. That is why it is common to hear of plaque on the teeth (mucus & food debris), plaque in the arteries (fat and cholesterol build-up), plaque associated with Peyronies Disease (hypertropic scaring), Alzeheimers plaque (Deposits of aluminium silicate and amyloid peptides), just to name a few. I know of absolutely no direct evidence that treating or preventing one of these will have any substantial impact on the many other forms of plaque since there is no real relationship. The English language has many such ambiguities caused by shared terms. It sometimes confuses their very, very limited commonality. Words like; nodule, blotch, plaque, scale, may each share some minor specific feature with other conditions using the same word but a scale and a scale are often more different from each other than a cat and a rhinoceros.
I'm always on the hunt for novel oral medicinal agents to combat this disease. Curcumin has come up recently, and I've read the discussion and want to add a few things.
1) Curcumin has been showed to clear amyloid plaques in Alzheimers disease. These are much different than the collagen depositions in Peyronies disease.
2) There have been discussions on how to increase serum levels of curcumin. Everyone should be careful changing the way the body metabolizes drugs in general just to increase one drug level, as all of the drugs you take could potentially be affected.
3) Several pubmed articles commented on curcumin INCREASING tgf-beta levels and improving wound healing (meaning skin cuts...NOT collagen deposition)! These mediators improve wound healing by INCREASING deposition of, among other things, fibrin and collagen which is the OPPOSITE of what we want. Peyronies Disease seems, as best we can guess from what I've read, due to the body not being able to shut off the healing mechanism. Abnormal TGF beta molecules have been demonstrated in Peyronies Disease, and the body may not clear these as quickly who knows. But if TGF beta is increased, it is likely that the abnormal TGF beta increases along with it. Just my theory...
http://www.ncbi.nlm.nih.gov/pubmed/17569219?ordinalpos=4&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
Many of us take pentox to decrease tgf-beta. My hope would be that curcumin wouldn't worsen the problem.
On a side note, there also was an article that demonstrated that tgf-beta skyrockets for several hours after strenuous exercise!!! That sucks...but obesity also raises tgf-beta through secondary mechanisms so I vote for being physically fit with Peyronies Disease!
To this day, nobody knows exactly what causes the abnormal depositioin of collagen in Peyronies Disease. My point is be careful, keep your head up and take one day at a time! And be very discerning with what you choose to put in your body, and always consider the cosequences of each move you make.
What surprises me here is that nobody seems to have picked up on the notation in the alzheimer study noting that even different cases of alzheimers responded differently to treatment with curcumin / Vitamin D. AND that they are discussing pre-treatment testing to determine who would benefit from what. This alludes to a concept that Tim has discussed here before that perhaps each of us as different individuals require individualized treatment for Peyronie's. So while we know that some things like Pentox seem to be helpful for a broad range of people, perhaps other things might be very beneficial for one individual, but not helpful or even perhaps detrimental for another. Hawk has also alluded to this in the case of Vitamin D. This is the value of having this discussion. So while I am extremely excited about the research discoveries going on out there, I think it is important to realize that there simply is NO SLAM DUNK for this on the horizon. This is not to say we should be gripped by depression. Believe me, the NEAR future looks extremely positive to me. I also believe that a solution is near. But that is an entirely different thing from saying that we are on the verge of an EASY solution. The tools are improving and soon will enable us to put this disease in reverse. But it is NOT going to be a matter of "take this little pill and tomorrow everything will be normal".
Also, regarding plaque. What ALL plaque has in common is that they represent a build up of abnormal and foreign material in various tissues. That is WHY it is collectively referred to as "plaque". Essentially, Plaque = bio-debris. What researchers are searching for is a common technique for stimulating the immune system to clean up this foreign material as it is supposed to. There are more than a few indications that these build ups demonstrate a common process gone bad even though the materials deposited vary widely in composition. Research has demonstrated an association between things like Alzheimers, heart disease, and ED, and others, ED often being a euphemism for Peyronie's. - George
roadblock - There are various studies suggesting that curcumin inhibits collagen and TGF beta production. I'll stick with it and see how it goes.
I agree with your point relating to being careful changing the way the body metabolizes drugs though. I had been using black pepper with curcumin for a few days, but it's probably not worth it all things considered.
The Alzheimer's study seems to be an in vitro study. I'd have been more impressed were it in actual people, but it is hopeful nevertheless.
The biggest positives to me with curcumin have been the results I'm seeing. It seems to have halted the progression of the disease for me these past few weeks, with perhaps the beginning of some curvature changes too (though that could be wishful thinking; it's still too early to tell). Pain is gone, and I think that points to good fundamental changes happening.
How much curcumin is everyone taking?
I have been to one urologist and he told me surgery for peyronies disease is the only way. I asked him about medications and other ways of fixing it and he sais no only surgery.
Has anyone tried Herbal Ed's tonics like Gotu Kola or Connective tissue tonic?
Your doctor is simply incorrect. There is no straight across the board answer for peyronies, everyones case is different. You are foolish not to try non surgery remedies like pentox before going into surgery. Even that does not address the underlying root of the problem with the auto immune dysfunction. You've gotten bad advise, but you found our pds society, so your in good hands now! The first thing I'd try if you would be pentox! You need to seek out a new doctor though. Unfortunately a lot of surgeons and doctors will tell you , you need a surgery or a procedure when its simply not true, especially if they sell that surgery (hmm conflict of interest? nahhh never!!!).
Comebackid
comebackid what is pentox and how would I get that?
Quote from: Noway on July 19, 2009, 01:37:24 PM
comebackid what is pentox and how would I get that?
Short form for a perscription drug. Full name.... Pentoxifyline. Generic name is Trentol.
Your uorologist will need to prescribe it. Not all uro's believe that it is effective and are hesitant to do this.
Many here have found that it helps to relieve pain with erections. It also improves blood flow to the penis.
Quote from: lwillisjr on July 19, 2009, 02:08:11 PM
Quote from: Noway on July 19, 2009, 01:37:24 PM
comebackid what is pentox and how would I get that?
Short form for a perscription drug. Full name.... Pentoxifyline. Generic name is Trentol.
Your uorologist will need to prescribe it. Not all uro's believe that it is effective and are hesitant to do this.
Many here have found that it helps to relieve pain with erections. It also improves blood flow to the penis.
Actually I believe it's the other way around. Pentoxifylline is the generic. Trental is a brand name.
Fred
I saw this and found it extremely interesting as it seems to attack the underlying root of autoimmune disease:
Low Dose Naltrexone (http://www.lowdosenaltrexone.org/)
QuoteAutoimmune diseases. Within the group of patients who presented with an autoimmune disease (see above list), none have failed to respond to LDN; all have experienced a halt in progression of their illness. In many patients there was a marked remission in signs and symptoms of the disease. The greatest number of patients within the autoimmune group are people with multiple sclerosis, of whom there were some 400 in Dr. Bihari's practice. Less than 1% of these patients has ever experienced a fresh attack of MS while they maintained their regular LDN nightly therapy.
Enjoy!
- George
is there some cure yet??? - getting impatient here
Fred22,
You are correct. Was typing too quickly...... thanks.
http://www.ncbi.nlm.nih.gov/pubmed/19375729?ordinalpos=8&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
I am on Losartan (Cozaar) because I needed a blood pressure drug and I specifically requested Cozaar from my physician because I believe it is helpful with my other problems INCLUDING Peyronie's. I have been on it for some time now and continue to believe one of the best BP drugs out their for most hypertension patients. It is still a few months away from being a generic so it is still a bit pricey. I forget now exactly when it goes generic, but I think it may be this year or perhaps in 2011. - George
Dear All:
I am on week 4 of 1200 mg/ day Trental. I was experiencing some mild nausea and grogginess during the early afternoon after the 2nd daily dose (I always take it with food). This appears to be subsiding. I have noticed several dietary changes that seem to mitigate the nausea. I hope this helps anyone else who experiences these side effects:
1. Acidic foods and beverages such as orange juice, citrus fruit, tomatoes and balsamic vinegar make me feel worse. Limiting intake of these foods (especially at noon) made me feel better.
2. Dairy, bread, cereal and other "bland" foods made me feel better. I ate more of these foods in the middle of the day and I felt better. Proteins also seemed beneficial. This is common sense for all tummy troubles, but worth mentioning.
3. Eating multiple small meals, especially a snack in the afternoon, kept the green gills at bay.
These last two aren't dietary, but are helpful nonetheless:
4. I started taking each does as far apart as possible within the recommended dosage period, taking my first dose at 6 or 7 am, second dose at 1 or 2 pm and final dose at 8 or 9 pm. I notice fewer incidences of nausea in the afternoon perhaps due to not having so much of the medication in my system at one time.
5. Started exercising in the morning rather than in the afternoon. Running and lifting in the heat make me feel gross anyway without having a gut full of slow release medication. Changing things up seems to help.
Hope this helps and good luck to everyone!
-Skjald
Skjaldborg,
I just increased my Pentox daily intake to 1200 mg from 1000 mg. I've been taking Pentox since mid-May. So far, I have not noticed any side effects from Pentox, including nausea. I have taken it with and without food.
It appears from other previous postings that some experience mild nausea and others do not.
I'm glad to hear your modifications are making you feel better.
CF
Skjaldborg,
Thanks for sharing your experiences here. I hope it helps others in need of such practical advice.
Tim
Cowboy,
I had nausea in the beginning only when I took the medication without food! This has went away for me now. You might feel restless legs in the beginning to, or a need to move them around. I always had and still have dry mouth, but its only mild, I drink a lot of water to try to flush the medication down, and since I take slow release big vitamins I want to flush them down as well. I don't take a vitamin daily either... I know what you mean about working out with thick pills in your stomach,its not pleasant, I think when you drink more water or liquid it will help dissolve the pills quicker. I don't take my vitamin and pentox pills together either, I try to wait at least 1 hour to take one after the other.
Comebackid
i take all my vits in 1 go - i get really bad stomach pain but at least its over and done with - i take 3 x 400mg of pentox daily - love it and would take more if I could - it goes down well with my toast in the morning....only joking..this disease is a crippling nightmare and I can F***king wait to get off this crap I put into my body - I must have done something REAL bad in my previous life!
Iceman - Maybe I'm not reading this right, but do you take all 3 pentox tablets at the same time? I tend to take them 8 hours apart so that it's always in my system.
I too get tired at times from taking all of the oral treatments, though if anything it's probably improved my overall health.
I generally only take 800 mg of Pentox daily, as it's two pills worth - and I am a generally scatterbrained individual! I can remember to take a pill every 10-12 hours, but having to take one every 8 doesn't work for me. I'm either sleeping when the 3rd pill is required, or I miss a few hours and don't have time to take 3.
Which raises two questions - will two pills still have an effect? 1200 mg seems to be the number bandied about most often, though my Rx literature tells me to take the pills 12 hours apart (for claudication, naturally, not Peyronies Disease, so I can see where it might differ). I know it's working to an extent, but am I missing out on anything truly important by missing that 400mg daily?
Secondly, can you even take two pentox at once? I was under the impression that these were powerful blood thinners, and the literature states things like arythmia and seizures to be potential side effects of overdosing (it doesn't say what constitutes an overdose, however). I'm worried about taking a pentox less than 8 hours after my last one - I got into this whole Peyronies Disease mess taking a pill I didn't need, I'm wary of taking extra pills to cure it!
Speaking of spacing apart Pentox, I had ordered Pentox once from an online pharmacy and got what I expected (Pentoxifilline). The second time I ordered from them instead of getting Trental I got Kinetal, and it also says "Pentoxifilline Sustained Release Tablets" on the package. Anyone else heard of this form? Seems like it would be better.
ALL Pentox tablets are sustained release, there is no other form of this drug. - George
George, I guess you are right.. I had assumed it was different and hadn't thought much more about it. I just found this page, http://stason.org/TULARC/health/Drugs-Herbs-Manual/Pentoxifylline.html , which lists them both as trade names for Pentoxifylline. -Joe
Has anyone heard of Peyreton?
"Peyreton" seems suspicious to me. The site contains testimonials supposedly dating back to january this year, yet the domain was registered on the date of 2009-05-11. It seems possible that these testimonials are written by the creator of the site himself. If this is the case, this is another example of cynical people trying to profit on the disease of others, instilling false hope.
There are no end of people selling "highly acclaimed" "cures" for Peyronie's and other difficult to treat diseases including every sort of cancer. These people typically work out of "mail drops" where they are there one day and gone the next selling a new miracle cure out of a different mail drop. They often reside in countries that don't view this kind of activity as a crime and perform their activities remotely which is easy to do in this electronic age. These treatments are usually safe and in trying them usually all you will waste is your money and your time, but don't expect any benefit. The proven approaches are all well documented on this website as are the potentially beneficial treatments which are almost always available from multiple vendors in a competitive marketplace. So if they make amazing claims about a pill and won't tell you what their secret formula is, beware! They are after your money and nothing more. And you will lose the opportunity to get started on something that is really effective while you waste your time chasing a fantasy and helping to make some crook wealthy. - George
Here's the story on Gordon's:
http://onesickmother.typepad.com/my_weblog/2009/07/gordons-herbal-research-center-scam.html
At the bottom of the page you'll see links to dozens of creepily similar web sites they operate, all with names ending in 'eton' for some reason. All hawking phony herbal cures. Apparently we've recently been added to the list of targets.
Ah yes! Peyreton didn't ring a bell, but Gordon's of New Zealand certainly does. I came across this website quite a while ago, but didn't pay much attention because is seemed to have scam written all over it, even though I couldn't put my finger on it. Whenever people put cute names on their products like "Peyreton", that is a red flag to me. So are impossible to verify testimonials. When looking for treatments, I prefer stuff I can verify to some degree like Naltrexone. At least it has some REAL FDA/NIH approved studies going on and didn't just drop out of the heavens. And it costs a whole lot less than Peyreton to boot. But then it doesn't promise to cure you of every ailment known to man ... if you buy enough of it, of course. Thanks j for that fascinating read. We all want to find more effective treatments, but don't be suckers guys, there are people out there trying desperately to cash in on your pain. They offer no risk and interest rates that are off the map. Don't be deceived! - George
Dear All,
I understand that many people here use and advocate the PAV cocktail (Pentox, Arginine, Viagra) as the oral protocol for Peyronie's. I am currently on Pentox (week 5) and L-Arginine but I have not used Cialis or Viagra. I do not currently have problems getting or maintaining an erection (except for pain during the erectile process, which I have experienced for approx 5 months of the total 6 months I have had this disease). My question is: will taking low dose Cialis or Viagra cause priapism since I do not currently have erectile problems? Has anyone else had that problem? Will I be walking around with a constant erection or what? I am thinking of adding Cialis to the regimen because I fear my hour glassing is getting worse and I want to make damn sure I'm doing everything I can. Any advice would be much appreciated.
Rough day today but you've got to keep fighting.
Best,
Skjald
Thanks everyone, for the in-put on the Peyreton. You confirmed my suspicions.
Cheers!
The link to onesickmother is fascinating. In addition to the links to Peyretron, they have a similar link to another scam site for payronie's called "http://peyronies-options.com/". Here is the description of the idea:
"You create two or three so called 'guaranteed treatments' for the SAME condition, market each one under a different bogus website and then set up a bogus "independent institute" to compare them all against each other, and then to "objectively" recommend one of them!"
The site listed above is the one that lists the herbal "options". It (like virtually all of the sites) is run by two Pakistani brothers who were educated (and perhaps raised) in England with citizenship and thus able to travel freely, but to produce product in Pakistan (cheap).
The description of how it works is fascinating!
http://onesickmother.typepad.com/my_weblog/2009/07/spah-the-medical-scam-clearinghouse.html
The same marketing ploy is used for multiple diseases. If you follow the links to Peyroten, the testimonials are identical to those used for fibromyalgia, etc. Identical. Similarly, the three site comparison scam is done again and again for every disease under the sun.
This site is a god-send to those of us who are wondering if something is a scam. It appears that a lot of crap is a scam out there.
Tim
Interestingly, looking at these ripoff artists, you can see that the site layouts for "comparing" treatments are always the same (even makes a cool sound when it opens up).
Acanthosis Nigricans (darkish coloration to the neck), Parkinsons disease, and Peyronie's Disease, for instance, all get the same look. Then, the links to the "independent products" that are "reviewed", are also similar (OK - identical).
Seeing the evidence of these peoples greed is good. It helps to remind us as we order things that look really good on the internet, that there are bad people who are crass and mean and greedy and they are going to hurt you. James Cho - see why we want more than vague references?
Just for good measure, here is how these young men think of us and out families (from the onesickmother" site): "These people seem to like their little inside jokes: "Murakab" -which is an Islamic term meaning "complex ignorance" is an ingredient in many of their products; The fact that initials of Society for the Promotion of Alternative Health make the word "SPAH" (think English accent) all point to a rather ignoble disregard for their target market: i.e. sick people and their families."
http://acanthosisnigricans-options.com/
http://bronchiectasis-options.com/
http://peyronies-options.com/
Notice how the links then go to sites that are also the same. The testimonials are the same. I looked for a disease that affects only women with a testimonial by a man, but could not find it. They are that good - they aren't making big mistakes, and they are slick. And they are bad and out to take your money.
Tim
We're now living in the Age of Information. We hope it will be followed by the Age of Correct Information.
It is blindingly easy to create an impressive-looking web site prmoting anything you can imagine. Scams, crazy conspiracy theories, wishfull thinking, creationism and pseudo-science, hysterical fears - are all presented on web sites that on the surface appear just as credible as the New York Times (which has had its own credibility issues).
The need for critical thinking skills has never been greater.
Skjald
Iam also on the PAV cocktail. I ve been on it for about a year off and on. Had to stop due to esophagus problems for a while.
I ve had no problems with the viagra. I take 25mgs at night before I goto bed after I use the VED. It only works if you have stimulation or you start to get something on your mind :) You will not walk around all day at attention. I noticed it helped me with nocturnal erections and morning glory. I only get morning glory if I take the viagra. Before I had Peyronies Disease I use to have it often. I ve noticed it also helps me with spontanious erections. Its important to have normal erections nocturnal and spontanious. It will not automaticlly give you priapism if you take it with good erectile function. I have good function and I take it as prescribed by the Doctor.
If you have any other questions I will be glad to ansewer them if I can.
Woodman
I have also heard that low dose naltrexone is very good for night time erections.
skunkworks:
Is naltrexone the same as trazadone?? Trazadone has been used by some on this forum to provide nighttime erections.
Old Man
Trazadone and Naltrexone are two very different drugs. Trazadone has been much discussed on this forum. Naltrexone on the other hand is described on the site http://www.lowdosenaltrexone.org (http://www.lowdosenaltrexone.org).
Quote from: WikipediaTrazodone (Desyrel, Beneficat, Deprax, Desirel, Molipaxin, Thombran, Trazorel, Trialodine, Trittico) is a psychoactive drug of the piperazine and triazolopyridine chemical classes that has antidepressant, anxiolytic, and hypnotic properties.[1] It has been advertised that its therapeutic benefits become noticeable within the first week of administration. Trazodone has considerably less prominent anticholinergic (dry mouth, constipation, tachycardia) and sympatholytic (hypotension, sexual dysfunction consisting of erectile dysfunction and anorgasmia) side effects in comparison to most of the tricyclic antidepressants (TCAs) and tetracyclic antidepressants (TeCAs).
Quote from: WikipediaNaltrexone is an opioid receptor antagonist used primarily in the management of alcohol dependence and opioid dependence. It is marketed in generic form as its hydrochloride salt, naltrexone hydrochloride, and marketed under the trade names Revia and Depade. ... Low dose naltrexone (LDN), where the drug is used in doses approximately one-tenth those used for drug/alcohol rehabilitation purposes, is being used by some as an "off-label" experimental treatment for certain immunologically-related disorders,[10] including HIV/AIDS,[11] multiple sclerosis[12] (in particular, the primary progressive variant,[13]) Parkinson's disease, cancer, fibromyalgia,[14] autoimmune diseases such as rheumatoid arthritis or ankylosing spondylitis, Crohn's disease, ulcerative colitis, Hashimoto's thyroiditis, and central nervous system disorders.
Naltrexone is a very different drug. The other reason I mention it is because I have seen mention of Peyronie's being an auto-immune disease, or similar and low dose naltrexone is basically the best treatment for any auto immune disease.
I would agree that Naltrexone would be an interesting candidate for Peyronie's therapy. The problem is that it is not FDA approved for use in the case of any autoimmune disease at this point as noted by the wikipedia entry. Therefore getting a doctor to prescribe it would be the tough part. I intend to pursue it for treatment of other issues and I plan to take note of its effect on my Peyronie's at the time. If anyone else has other issues that would make them more likely to be successful in convincing some doctor to prescribe it for them that would also be interesting. In my case I will of course share anything I learn about it in the process here on this forum AND with my Peyronie's doctor. It is proving helpful to people with a diverse range of autoimmune related diseases and certainly its usefulness in the treatment of Peyronie's should be investigated. But because its a cheap off patent drug no pharmaceutical company is willing to invest money in it and doctors are reluctant to prescribe it for off label use. Sort of like the initial problem with Pentox. - George
Quote from: George999 on August 02, 2009, 11:39:44 AM
I would agree that Naltrexone would be an interesting candidate for Peyronie's therapy. The problem is that it is not FDA approved for use in the case of any autoimmune disease at this point as noted by the wikipedia entry. Therefore getting a doctor to prescribe it would be the tough part. I intend to pursue it for treatment of other issues and I plan to take note of its effect on my Peyronie's at the time. If anyone else has other issues that would make them more likely to be successful in convincing some doctor to prescribe it for them that would also be interesting. In my case I will of course share anything I learn about it in the process here on this forum AND with my Peyronie's doctor. It is proving helpful to people with a diverse range of autoimmune related diseases and certainly its usefulness in the treatment of Peyronie's should be investigated. But because its a cheap off patent drug no pharmaceutical company is willing to invest money in it and doctors are reluctant to prescribe it for off label use. Sort of like the initial problem with Pentox. - George
I am going to talk to my dermatologist about prescribing it for my psioriasis, but if not I may just order if from an online pharmacy. It is a very safe drug, and too cheap for anyone to bother counterfeiting. If I can get it I will also try to document from day one.
Glad to hear someone else had already been thinking about it before I mentioned it.
Hi Guys,
I have been a lurker on this forum for some time now, and would like to say thank you to you all, I don't know what state I would be in without your info.
My Peyronies Disease started last September with the BB and then progressed to the plaque and then an upward 40 degree bend at the gland. I live in Thailand so I can buy Pentox over the counter and after seeing this website and everyones testimonials to Pentox I immediately started taking 3xday at the beginning of March. Since then the plaque has shrunk to half the size but still had the BB.
Anyway, I have a lot of other autoimmune issues, including psoriasis, RA in my right foot big toe and multiple allergies that I have been taking antihistamines nearly every day, for the last 20 years.
Because of these issues I was searching for something that would help and came across Low dose naltrexone (LDN). Unfortunately, no pharmacy that I have been to stocks it here. So I bought some online from India. Here is the link http://www.alldaychemist.com/common_generic/Naltrexone.html
It arrived within a week, They are 50mg tabs, so to cut them down I put 50ml/cc of water in a brown glass bottle put in one 50mg tab give it a shake and draw out 4.5ml/cc using a syringe (without needle:)
and drink at bedtime. Well, after the first dose and a night of vivid dreams and feeling of euphoria on the night of the 25th July. I have not had any allergic reactions, pain in my big toe has gone (still swollen/enlarged bone). My psoriasis was only on my elbows because I sunbathe a few times a week, but this has slightly improved also (but not totally gone). I stopped taking the Pentox on the 25th July to see what would happen to my Peyronies Disease while only taking the LDN.
Well, I know it has only been just over a week I have been on LDN, but I cannot feel the BB, there still seems to be some plaque there and I still have an upward bend at the gland when erect.
I will report back if there is any change.
Again, many thanks to you all for the forum.
P.S. Here is a link to an LDN website http://www.lowdosenaltrexone.org/
is this worth it LDN - is it ok to use - has anyone ever used this?? - it seems a bit risky - isnt it a form of opium?? - should i give it a try just for the hell of it? - can LDN affect pentox??
BEANO - what is a BB you mention?
I am in India for some time hence can buy Rx drugs easily.. does anybody has any refrnc/studies which say it should be helpful for our condition... I knw excat studies will not be possible.. but anything which gives confidence for trying it,... I can start it off today itself if it makes sense... also how much is low dose 5mg ???
Google it and find out. I have never heard of anyone using it for peyronie's disease before. All I know is that it has been successfully used to treat many auto-immune conditions, and some on this forum think Peyronie's is also an autoimmune condition.
Ice man, BB sized palpable nodule. As Skunkworks says, GOOGLE IT and read the LDN website http://www.lowdosenaltrexone.org/
Young25, Low dose is 4.5mg. READ THE MATHS, They are 50mg tabs, so to cut them down I put 50ml/cc of water in a brown glass bottle put in one 50mg tab give it a shake and draw out 4.5ml/cc.(4.5ml/cc = 4.5mg) and store the rest in the fridge. How simple is that.
Skunkworks, I also think it may be an auto-immune condition, thats why I stopped taking the Pentox to see what happens ( I'm using myself as a guinea pig)
Quote from: skunkworks on August 02, 2009, 07:55:26 PMI am going to talk to my dermatologist about prescribing it for my psioriasis, but if not I may just order if from an online pharmacy. It is a very safe drug, and too cheap for anyone to bother counterfeiting. If I can get it I will also try to document from day one.
This is not a drug you can "just order from an online pharmacy". READ the information on the LDN website! Naltrexone will actually make your problem worse. What you need is "LOW DOSE Naltrexone" which must be expertly custom compounded. That WILL require a prescription. No way around it. But certainly psoriasis would be a perfect excuse for getting the drug. If your dermatologist won't prescribe it for you, I am sure there are doctors who would. You might do a web search and look for docs in your area who might be working with it. - George
To all who are suggesting making up LDN on your own, I would be cautious. I know that LDN is a very safe drug, but it does effect the body on a hormonal level and I would be concerned about the risk of getting it not quite right and ending up making my condition worse in the long run. I also think there are enough physicians around who would be willing to prescribe it. Another issue with Naltrexone is that there is an extended release version and taking that would not be a good thing even in a cut down dose. There are even cautions on the LDN site about using only pharmacies with experience in compounding LDN. So I would be careful. - George
I am aware, Dr. Shippen prescribes it to some propecia patients..I will try and see if I can get more information on that..
For those interested, the cost of LDN prepared by a compounding pharmacy runs somewhere around $1 per day. - George
Quote from: George999 on August 03, 2009, 10:24:27 AM
Quote from: skunkworks on August 02, 2009, 07:55:26 PMI am going to talk to my dermatologist about prescribing it for my psioriasis, but if not I may just order if from an online pharmacy. It is a very safe drug, and too cheap for anyone to bother counterfeiting. If I can get it I will also try to document from day one.
This is not a drug you can "just order from an online pharmacy". READ the information on the LDN website! Naltrexone will actually make your problem worse. What you need is "LOW DOSE Naltrexone" which must be expertly custom compounded. That WILL require a prescription. No way around it. But certainly psoriasis would be a perfect excuse for getting the drug. If your dermatologist won't prescribe it for you, I am sure there are doctors who would. You might do a web search and look for docs in your area who might be working with it. - George
Actually yes it is, as it is water soluble. This is something I have researched extensively. It does not require expert compounding, although that would be far more convenient (albeit at added expense).
As for dosage, as previously mentioned it is water soluble so splitting up the dose is as easy as dissolving a tablet into a predetermined amount of water and taking a set amount of that water. ie if the pills are 50mg, and I want to take 5mg, I dissolve it into 100ml of water and take 10 ml of the solution.
As for the online pharmacy and prescriptions, I will not comment on that further as I do not wish to promote the use of online pharmacies. I hope to get a doctor to prescribe the naltrexone.
so will LDN work for Peyronies Disease???????????????? - has any one out there ( even lurkers) had any positive results???????????????????????????????????????????????
I think the best we can hope for is that LDN might be an incremental improvement over Pentox. Knowing what I do about it, I don't think it would actually reverse Peyronie's. I do think it could be far more effective than Pentox at stopping its progress. I base this assessment on the reality that LDN has been known to stop Multiple Sclerosis SYMPTOMS in their tracks, BUT brain scans show that there is no perceivable improvement in the physiological damage caused by MS. I use MS as an illustration because these are the people who have been most studied while using LDN. So while I suspect that LDN might be useful to us, I cannot conceive that it would be a panacea. But I will welcome whatever help I can get and will be thankful for it. So far vitamin D + Pentox is keeping my Peyronie's in check, but I know some of you are not getting the action you need from these and I am hopeful that LDN will prove to be helpful in such cases. I think LDN + vitamin D would make a great team and I see no reason why Pentox could not be included as well in that regimen although one might not need Pentox with LDN, but that is all speculation on my part. - George
So would you say that the only cure all would be a potent anti fibrotic agent of some kind?
I have only just encountered this condition so do not know indepth what actual structural changes are happening inside a Peyronie's inflicted condition, but from what I have read it would seem to be related to scarring and fibrosis?
Here is a good website for the side effects of LDN, also dosage for different sized people.
Personally, both me and my wife have suffered with vivid dreams and sleepless nights since taking LDN and thinking about reducing the dose by 1mg if the nights don't get better soon. I weigh 75kg and taking 4.5mg, my wife weighs 50kg and is taking 3mg
http://www.webspawner.com/users/sideeffectsofldn/index.html
Quote from: Iceman on August 03, 2009, 09:23:40 PM
so will LDN work for Peyronies Disease???????????????? - has any one out there ( even lurkers) had any positive results???????????????????????????????????????????????
Neither I nor anyone else is saying that this is a cure, nor that it will even help. I was just mentioning that there is a possibility that it might be beneficial for the condition given its history of results with other autoimmune diseases, as some on this site class Peyronie's as an autoimmune disease.
The second reason I thought it worth mentioning was because I read that some on this forum are using drugs such as viagra and trazadone (?) to promote night time erections, which is another common side effect of low dose naltrexone. I hear that night time erections are good for the penis as they promote blood flow, and more than once on this forum I have read about people speaking of seeing improvements in erectile function after supplementing for night time erections.
As stated before I am taking LDN for the auto-immune issues I have. NOT primarily for Peyronies Disease. But, if it stops the progression of the Peyronies Disease I will be one happy chappy.
If the Peyronies Disease progresses again I may go back on the Pentox, but I was suffering with arrhythmia when I was relaxing in bed before I went to sleep at night on Pentox and have been OK before and since coming off it.
Also, I am a fit 53 year old. I run every other day and go to the gym between. While on Pentox, running with an heart rate monitor, my heart rate was always higher than pre-pentox and sometimes while only jogging my heart rate would suddenly shoot up to 180+ bpm for no reason. Since coming off Pentox my heart rate is back to normal and I find it difficult to get my heart rate over 140 even running uphill.
My resting blood pressure is approx 115/65 and pulse approx 50bpm.
Sorry for babbling on but this has been worrying me.
Thank you ALL for your excellent contributions in terms of thoughts and experiences regarding LDN. I really think that LDN is a new potential ray of hope for all of us. At this point our choices of treatment are so very limited that each new possibility brings excitement hand hope. Still, many of us are asking the question "but where is the cure?" in terms of eliminated preexisting physical tissue damage and deformity. To that I would answer that underlying that damage and deformity is actual genetic damage in the form of genetic mutation. My personal hope is that maintaining healthy vitamin D levels over time might chip away at that problem since vitamin D is known to police genetic integrity. Some researchers are saying that with five years of continued normal vitamin D levels positive genetic changes *might* begin to take hold. I think another route to that same end, of course, may be a brute force method like Xiaflex. And I also think it is important not to neglect mention of the VED is a potential tissue remodeler. And, of course, over time LDN may have some impact here as well, but that is NOT being exhibited in the short term in regards to LDNs impact on damage from other autoimmune diseases which are currently being investigated. But keep up the good conversation on this, we are all learning from each other. - George
QuoteTo that I would answer that underlying that damage and deformity is actual genetic damage in the form of genetic mutation.
So you are saying that a genetic predisposition to fibrosis is what you believe is the cause? And that by removing/treating that genetic disposition normal healing might take place after a trauma instead of fibrosis?
Quote from: skunkworks on August 04, 2009, 06:58:19 PM
QuoteTo that I would answer that underlying that damage and deformity is actual genetic damage in the form of genetic mutation.
So you are saying that a genetic predisposition to fibrosis is what you believe is the cause? And that by removing/treating that genetic disposition normal healing might take place after a trauma instead of fibrosis?
What I am trying to say is that it is very complex. We all have unique genetic vulnerabilities, but in early life those "bad" genes usually stay "quiet" and our lives are unaffected. What we are learning now from research is that in the absence of vitamin D, those "bad" genes are much more likely to become "expressive", and when they do we have a problem. Often it is some triggering event that causes this malfunction to reveal itself in the form of debilitating disease. But the underlying disease has a genetic component and until that genetic component is corrected there is no lasting solution. The hope is that normalized vitamin D levels over time will shut these "bad" genes down and make them "quiet" once again. In the mean time we are finding better ways to shut off the inflammation which at least stops the damage from progressing. That may in fact lead to a glacially slow healing process, but actually fixing things at the genetic level might make that happen faster. Also, remember that this genetic damage can occur on different levels simultaneously. You can have systemic genetic damage that causes hormone levels to get screwed up. At the same time you can have locally occurring fibrosis or malignancy or even infectious disease that involves abnormal genetic changes in localized tissue. It has been compared to layers of swiss cheese. Think of a stack of swiss cheese with each slice having ever growing holes. As long as the holes don't line up, you don't have a problem. But eventually there will be a conjunction of the holes somewhere in the stack and you will be able to see from top to bottom. Until we see progress at the genetic level we will only be able to stabilize the disease but not truly cure it. In the case of "incurable terminal illnesses", it means that we are already at the point were once incurable diseases are becoming instead chronic diseases where continued medication is required to control them. But they CAN be controlled whereas a few short years ago they were a death sentence. There is still a lot we don't know, but the good news is we are learning things at an ever faster pace as the mysteries get unraveled and the pieces of the puzzle find their places. Right now we need to be satisfied with incremental gains which I expect to continue. Peyronie's is still a nasty disease, but our generation is blessed because things are getting better quite fast. And we need to ever be thankful that we have fibrosis in our penises and not in our liver or pancreas or lungs or brains or kidneys. It could be much worse and much more debilitating. There are ever so many people that would LOVE to trade places with us and exchange their problem for ours! - George
Just playing devils advocate for a second. If LDN actually boosts the immune system, do you think that could be a potential problem with using it as treatment for peyronie's? If the immune system is treating initial injury to the penis in an abnormal fashion, could this be magnified yet further under the use of LDN?
I'm likely wrong in my thoughts since LDN appears to be of used in other autoimmune diseases, but I thought I'd bring this point up anyway.
The cause of autoimmune disease is NOT a overly strong immune system but a weak and imbalanced immune system. The reason that immune system enhancers are dangerous for people with autoimmune disease is not because they strengthen the immune system but because they fail to balance the immune system in the process, and in fact may cause it to become more imbalanced. The way many of these diseases have been treated in the past IS by drugs (like Pentox) that weaken the immune system. But that is not the best approach. A strong and balanced immune system in necessary for the prevention (and elimination) of autoimmune diseases, cancers, AND infectious diseases. The immune system, for example must have big guns to get the job done AND it must be able to differentiate between friend and foe to avoid collateral damage. That is the balance that must be struck. Many drugs can give the immune system bigger guns, but, in the case of autoimmune disease we need drugs (and other therapies) that enable it to better differentiate between friend and foe. With autoimmune disease our bodies are dying not from an overly strong immune system, but from a confused immune system that is killing us with friendly fire. With cancer on the other hand the opposite is true. The immune system may well be plenty strong, but it is being outsmarted by the cancer, so it is really not so strong after all. But giving it bigger guns is not going to make the cancer go away. We are even finding out that there are similar things going on with infectious disease. So we need to strengthen the immune systems ability to target the bad guys and leave the good guys alone. This is the exciting emerging medical science right now! - George
Just another random thought. Sorry about all these posts, I am new to the Peyronie's situation and have only just started thinking about it. I have a degree in human biology and am remembering all these chemicals that have properties that might relate to peyronies.
There is an extract from onions called quercertin which has shown itself to have antifibrotic capabilities in quite a few studies. Have any of the scientifically minded on this forum ever thought of its possible application to peyronie's
I have found Quercetin to be a mixed bag. It has been helpful for allergies, it has seemed to actually aggravate my neuropathic problems, and it has not had any perceptible effect on my Peyronie's status. Like a lot of other known antifibrotics I have tried, it was another disappointment. My conclusion has been that there is some sort of factor in the autoimmune process that is preventing these plaques from being broken down, sort of like cancer cells have the ability to fend off the immune system when the immune system is compromised. And, actually, the natural breaking down of scar tissue IS a process accomplished by the immune system. That is why the immune system is where we need to focus. If its not right, even supplements and drugs targeted at it may not work and may actually result in unintended consequences. - George
The problem, too, George, is that each of our individual processes are possibly quite different. There may be those with autoimmune disorders, others with over-expression of TGF beta'1, others with inadequate functioning collagenase, others with deficient blood flow, others with excessive glycation products. So, of another person, quercetin may help. There have been no randomized double blinded studies of this for all comers though. I thus always encourage those with curiosity and some means to try things. Just remember that results may take months and for most of us, resources are limited. Thus, I would encourage exploration, but I would also encourage not wasting time on frosting, when there is cake to be eaten. Go after the VED and PEntox first, perhaps ALC - then look into the other stuff.
Tim
Quote from: Tim468 on August 05, 2009, 11:49:53 AM
The problem, too, George, is that each of our individual processes are possibly quite different. There may be those with autoimmune disorders, others with over-expression of TGF beta'1, others with inadequate functioning collagenase, others with deficient blood flow, others with excessive glycation products.
Tim, I really think that one could say this about any number of autoimmune diseases including MS. The reality is that your whole list of possible causes are immune system related. They are all the result of a malfunctioning immune system and fixing THAT is where we should be focusing. I TOTALLY agree with you about making use of the few proven remedies out there and am not trying to discourage anyone from experimenting. skunkworks asked if anyone had any experience with Quercetin, I take it six to eight months out of the year for allergy issues, so I could only respond with my experience.
The future is in moving back up the immune system tree. Certainly this is what is happening with LDN which is showing itself capable of treating multiple immune dysfunction related diseases. And that will be the future. More and more powerful drugs will show themselves capable of treating a broad spectrum of diseases unlike earlier drugs which are designed to be useful in treating only one disease. It used to be that anyone claiming a drug could treat many diseases was regarded as a quack. And the reality was that they were. But medicine is undergoing a sea change which is changing that reality.
Quote from: George999 on August 05, 2009, 11:02:31 AM
I have found Quercetin to be a mixed bag. It has been helpful for allergies, it has seemed to actually aggravate my neuropathic problems, and it has not had any perceptible effect on my Peyronie's status. Like a lot of other known antifibrotics I have tried, it was another disappointment. My conclusion has been that there is some sort of factor in the autoimmune process that is preventing these plaques from being broken down, sort of like cancer cells have the ability to fend off the immune system when the immune system is compromised. And, actually, the natural breaking down of scar tissue IS a process accomplished by the immune system. That is why the immune system is where we need to focus. If its not right, even supplements and drugs targeted at it may not work and may actually result in unintended consequences. - George
I was actually more thinking of it as a topical, as it has been shown to have topical benefit for fibrosis in another study I read a while back, will try to find it.
I have little else to add regarding Quercetin, other than to say that it is thought to aid the bioavailability of Curcumin.
I was asking my local natural pharmacist about treatments to boost testosterone naturally. I still beleive that my Peyronies Disease came from a hormonal imbalance caused by finasteride, a DHT-inhibitor. I am toying with the idea of increasing my testosterone, and thus my DHT, which I hope will curb the progression of my peyronie's disease.
My pharmacist told me to take 7-keto DHEA with a supplement called Calcium D-Clucarate. He knows I have peyronie's disease, but I was wondering if by taking a calcium supplement that I was increasing the chances of having my plaques calcify? Or if daily pentoxifylline will offset those risks.
I'd appreciate any feedback from any of the members who are better versed in oral treatments than I!
Thanks.
Quote from: skunkworks on August 06, 2009, 10:05:35 AMI was actually more thinking of it as a topical, as it has been shown to have topical benefit for fibrosis in another study I read a while back, will try to find it.
Quercetin dihydrate is a small molecule (338.27 Da), a prerequisite for getting through the skin. It might hold some promise for keloids (PMID 17086741 (http://"http://pubmed.gov/17086741")), and some sources point out similarities between keloids and Peyronies Disease. Worth a shot. A lot of the reviews at iHerb (http://www.iherb.com/Now-Foods-Quercetin-500-mg-100-Vcaps/774?at=0) mention it helping their allergies.
s&s
Edit: good in vitro results with quercetin here (http://pubmed.gov/12813346).
ocelot556 - You might want to try Tongkat Ali.
Quote from: slowandsteady on August 06, 2009, 03:51:37 PM
Quote from: skunkworks on August 06, 2009, 10:05:35 AMI was actually more thinking of it as a topical, as it has been shown to have topical benefit for fibrosis in another study I read a while back, will try to find it.
Quercetin dihydrate is a small molecule (338.27 Da), a prerequisite for getting through the skin. It might hold some promise for keloids (PMID 17086741 (http://"http://pubmed.gov/17086741")), and some sources point out similarities between keloids and Peyronies Disease. Worth a shot. A lot of the reviews at iHerb (http://www.iherb.com/Now-Foods-Quercetin-500-mg-100-Vcaps/774?at=0) mention it helping their allergies.
s&s
Edit: good in vitro results with quercetin here (http://pubmed.gov/12813346).
Good find on that study, am still searching for the topical one I read before. WIll post soon as I dig it up.
Quote from: ocelot556 on August 06, 2009, 03:49:08 PM
My pharmacist told me to take 7-keto DHEA with a supplement called Calcium D-Clucarate. He knows I have peyronie's disease, but I was wondering if by taking a calcium supplement that I was increasing the chances of having my plaques calcify? Or if daily pentoxifylline will offset those risks.
I'd appreciate any feedback from any of the members who are better versed in oral treatments than I!
Thanks.
Dhea converts to Estrogens in male more than T, so be careful... I too have Low T and took Dhea for a while & I ws atleast mentally feeling better but I could feel something like a gyno developing so i Stopped. Also I took Saw Pallemetto(a mistake) for a week a month back to dhea supplements so I really dono what ws triggering the gyno...
I would recommend taking Dhea in supervision of a Doc. When I got my bloodwork my Dhea was actually over the roof so I was actually over supplementing my body. Nw i have left it to my Doc to get my hormones in shape( in my case Dr. Crisler), too scared to mess them up again... Hope this helps
Young25--
I was told by my pharmacist that although DHEA does convert into estrogen, 7 Keto DHEA does not. My research (one day strong at this point) seems to indicate that this is the case, as well.
... And coming back to LDN, there is a mention on lowdoesnaltrexone.org that a woman reported a condition known as "Pemphigoid" -- a condition in which blisters appear on your skin. The report states that LDN slowly cleared and healed after 6 weeks of treatment.
Wikipedia states that penphigoid is both an autoimmune disorder AND a connective tissue disorder. Sound familiar?
Quote from: ocelot556 on August 07, 2009, 04:06:22 AMI was told by my pharmacist that although DHEA does convert into estrogen, 7 Keto DHEA does not.
[snip]
... And coming back to LDN, there is a mention on lowdoesnaltrexone.org
That's why I take the 7 keto form too; my testosterone is at a good level as is.
LDN is interesting. Imminst.org thread here (http://www.imminst.org/forum/index.php?showtopic=18073&st=0).
As I look down the topics in the forum I find that "Success" was 16 down from the top. It would seem that if we had more success or real improvement that topic would float a little higher up. If you read the success stories most are from surgery, implant, ved usage. When I was first diagnosed I hoped to be one that would recover naturally. Remember how most urologists take the wait and see course of action. Don't forget to take your vitamin E as that will help. Please continue taking your vitamins, herbs & supplements as even if they don't cure you they probably won't hurt. I would like nothing more that to take a hand full of pills and my bent penis would return to as it once was. That is desperation dreaming. If you have a 35 deg. bend and what you use or take seems to bring some improvement, good for you. If I had a 35 deg. I would consider myself cured. The truth is that I don't think the pill has been developed yet that will dissolve scar tissue. Surgery can cut it out. (Most people don't want to hear the word cut) If I was a person of financial means I would sign up for surgery today. A real drug like Xiaflex may bring some improvement. (I was told that Xiaflex may lessen my bend but never bring me close to being straight) A real cure will come sometime down the road but I doubt if it will be for adding a little more vitamin D in our diet. Lets get off desperation dreaming and get the professionals to find us a real answer.
S&S,
The thread on LDN you posted is interesting.
Here is a quote from post#59
Ive just had my total testosterone checked
Its come back high after 1 month on 3-3.5mg LDN
Testosterone 30 nmol/L (range is 9.9-27.8 nmol/L)
not a huge amount over range..however Im not taking anything other than LDN that could make this elevate..this is rather high for a 43 yr old.
On the positive side my Thyroid Antibodies have dropped from
900 to 290...a huge drop..
Also my Liver Function Test 'GGT' dropped from
130 -> 76 ...getting closer to normal.
25 OH D is 100 nmol/L (range 60-110 nmol/L) so pretty OK no need to supp...
so to wrap up LDN appears to be doing good..however some bad as well...previous to this I had mid-range normal levels.
Im still experimenting with dose..and will get it all checked again in month.
On a personal note.
I am finding the lack of sleep with LDN becoming a drag. I go back to work offshore on Wednesday for 6 weeks, so may try daytime dosing while at work.
My wife has had no sleep problems with LDN. But, has developed flu like symptoms this morning.
Quote from: Beano on August 07, 2009, 11:46:23 PM
S&S,
The thread on LDN you posted is interesting.
Here is a quote from post#59
[snip]
On a personal note.
I am finding the lack of sleep with LDN becoming a drag. I go back to work offshore on Wednesday for 6 weeks, so may try daytime dosing while at work.
My wife has had no sleep problems with LDN. But, has developed flu like symptoms this morning.
Are you taking any melatonin? I take 6g at night. Hopefully I'll sleep through it when my LDN comes in. How much naltrexone are you taking, and has it helped with pain? With my twice daily 2g curcumin mixed in oil, I've been pain-free (even discomfort free) for over a month now, with no curvature progression.
s&s
Just a word of caution on melatonin. Most melatonin products now carry a warning regarding people with autoimmune issues using it. I would be very cautious. I ended up with neuropathy and discovered that melatonin greatly aggravates it. I wouldn't say that it CAUSES it. But I would say that it is probably capable of TRIGGERING it if you are susceptible to it. - George
Thanks George. Melatonin and autoimmune is something to dig deeper into.
PMID 19435479 (http://pubmed.gov/19435479):
QuoteConsequently, estrogens (especially in patients affected by B-cell-driven immunity) and melatonin should be avoided, and glucocorticoids (as replacement therapy) and vitamin D are allowed in the treatment of autoimmunity.
I'll have to dig deeper into this.
As George pointed out, Melatonin is a at least a suspected if not a documented problem with most autoimmune diseases. Unfortunately it is an immune enhancer and beneficial in several forms of cancer prevention. It becomes the age old quandary of damned if you do damned if you don't :)
Hawk, I believe the problem with Melatonin is NOT its immune enhancement qualities. Both melatonin AND LDN raise endorphin levels and endorphins are immune enhancing. BUT Melatonin creates problems and LDN relieves problems. So the problem more likely has something to do with another of melatonin's functions. Most of these hormones have multiple functions and coexist in a delicate balance. That is the problem with directly repleting individual hormones. When things get out of balance, bad things can happen. I know that stimulating the immune system in the case of autoimmune disease is counter intuitive, but so is suppressing the immune system in the case of cancer, and we do that all the time. The immune system is far too complex and nuanced to be described as "strong" or "weak". The immune system gets out of kilter in multiple ways and the challenge is not to "strengthen it" or "weaken it" but rather to balance it. That is the beauty of vitamin D, the ONLY hormone that we NATURALLY supplement all the time since our body is not capable of manufacturing it without rare food sources or exposure to sunlight. Thus it is the only hormone completely subject to lifestyle decisions. - George
Have any other members started on Low Dose Naltrexone yet? I'm interested to see how people get on with it. From looking at the life extension site and peoples reactions to it over a period of time, even in low doses it does sounds somewhat heavy duty compared to many supplements people are taking here. I suppose that has to be weighed up against the possible potential to deal with peyronie's inflammation though. It's at least one treatments that should be fairly obvious and unambiguous as to whether it works or not.
I supposeit depends somewhat on the cause of peyronie's disease in the individual. If someone has immune issues I can see how it can be useful. If a person appears to have no such issues and instead their conditions seems to tally more with the "trapped inflammation" theory, maybe it won't be of as much use. I really don't know, but it will be interesting to see how this one unfolds.
Quote from: George999 on August 09, 2009, 11:42:50 AM
I know that stimulating the immune system in the case of autoimmune disease is counter intuitive, but so is suppressing the immune system in the case of cancer, and we do that all the time. The immune system is far too complex and nuanced to be described as "strong" or "weak". The immune system gets out of kilter in multiple ways and the challenge is not to "strengthen it" or "weaken it" but rather to balance it.
George, I don't argue the point that it is a tuned immune system that is the goal (or problem) rather than strong vs weak. Your other point however leaves me racking my brain for any cancer treatment that is designed to or intended to suppress the immune system. Some do as a undesired side-effect, but huge effort and expense are always directed to prevent that from happening.
Hawk, I believe that a number of currently used cancer meds are immune suppressive. And I understand that this is not a desired effect, but is rather an undesired side effect as you note. My point is that in the case of drugs useful for autoimmune disease, you may well end up with the same case. A beneficial drug may have the unwanted side effect of being immune strengthening and still might be useful as it might have other beneficial effects on the immune system that outweigh the unwanted effect. My concern is that people fought LDN use for autoimmune disease based on that very argument in the face of case studies indicating positive results and they are still fighting that battle in the face of preliminary controlled trials in spite of the fact that everyone of these trials has ended in success. It is the same sort of attitude that vitamin D researchers are facing in spite of overwhelming evidence on the side of the need for major increases in vitamin D intake. Fortunately, in the case of vitamin D, these people are finally losing ground. Creighton University just received $4 million from the NIH to do an extensive (2300 individual) follow up on their study finding heavy vitamin D supplementation in older women resulting in an astonishing 77% reduction in cancer risk within two years. And the WHO is planning a massive vitamin D study soon as well. Scotland is also now in the forefront of vitamin D research. I believe that they will eventually find that vitamin D supplementation will result in a massive health benefit to 95% of the population. A few it might prove deadly to, but that is the case with most modern medications such as statins which a few people regularly die from. It will be up to the individual to decide if the risk/benefit ratio works for them. Personally I have already decided. But I hate it when people are obstructionist based on their own personal prejudices. There are so many approaches out there just reeking with potential value that are being buried in ignorance rather than being responsibly investigated. - George
I have been trying to take the 4.5mg dose of LDN like a man. But alas, it looks like I'm not up to it (squeak squeak). So, I've dropped the dose down to 3mg the same as the wife is taking with no problems, and had a wonderful nights sleep last night.
As stated previously, My multiple allergies have stopped since the first dose of LDN, the RA in my right big toe, the pain stopped after the first dose of LDN and since then the swelling has gone. Which I think is miraculous considering I have been in pain with this for over a year. My psoriasis on my elbows has improved but I still have some rough skin.
As for the Peyronies Disease, I'm not sure how much improvement there has been. To me the plaque feels softer and my erections feel harder, but it may be only wishful thinking. I am also taking since the beginning of March L-Arginine and a Thai root herb for night time erections thats called Butea Superba. If you google it, there are plenty of write ups and I highly recommend it.
Quote from: Beano on August 09, 2009, 10:28:07 PM
I am also taking since the beginning of March L-Arginine ...
Have you tried pycnogenol with your l-arginine (see my earlier post (https://www.peyroniesforum.net/index.php/topic,22.msg20172.html#msg20172))? I would say it works better than viagra, but I've never tried viagra. ;) I'm taking 2.5 g of l-arginine and 100mg of pycnogenol on waking.
No, I'm not using pycnogenol. But it looks interesting, I will give it a go if I can find some.
I started taking Alpha lipoic acid and ALC a couple of days ago, I read were it is recommended with LDN
Quote from: Beano on August 09, 2009, 10:28:07 PM
As stated previously, My multiple allergies have stopped since the first dose of LDN, the RA in my right big toe, the pain stopped after the first dose of LDN and since then the swelling has gone. Which I think is miraculous considering I have been in pain with this for over a year.
WHOA! You boosted your immune system with LDN and your RA problem is resolving. Will wonders never cease! I wonder how the immuno-phobic LDN skeptics would explain this? - George
Quote from: George999 on August 10, 2009, 10:55:25 AMWHOA! You boosted your immune system with LDN and your RA problem is resolving. Will wonders never cease! I wonder how the immuno-phobic LDN skeptics would explain this? - George
;) To be fair, the mechanism of LDN's impact on the immune system is not well understood. It increases the levels of beta-endorphins (http://www.lowdosenaltrexone.org/#How_does_LDN_work_):
QuoteThe brief blockade of opioid receptors between 2 a.m. and 4 a.m. that is caused by taking LDN at bedtime each night is believed to produce a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production. Normal volunteers who have taken LDN in this fashion have been found to have much higher levels of beta-endorphins circulating in their blood in the following days. Animal research by I. Zagon, PhD, and his colleagues has shown a marked increase in metenkephalin levels as well.
Beta-endorphin is "used as an analgesic in the body to numb or dull pains" (wiki (http://en.wikipedia.org/wiki/Beta-endorphin)).
Also,
QuoteIn general, in people with diseases that are partially or largely triggered by a deficiency of endorphins (including cancer and autoimmune diseases), or are accelerated by a deficiency of endorphins (such as HIV/AIDS), restoration of the body's normal production of endorphins is the major therapeutic action of LDN.
I was unaware of this take on the cause of autoimmune disorders. The above quotes come from the low dose naltrexone site.
Also at the site is a page (http://ldn%20and%20autoimmune%20disease) on "LDN and Autoimmune Disease":
QuoteThere is growing recognition in the scientific community that autoimmune diseases result from immunodeficiency, which disturbs the ability of the immune system to distinguish "self" from "non-self". The normalization of the immune system induced by LDN makes it an obvious candidate for a treatment plan in such diseases.
So, if any of this is true, it may be more of a retraining of the immune system.
s&s
If the possible application for LDN in peyronie's disease is to impact the inflammatory response, then it will be pretty easy to tell if it isn't has an application here. If someone takes it for two or three months and experiences no change then it likely isn't for them. If multiple people try it with no positive response then I guess its positive effects don't stretch to peyronie's. Hopefully it will hold an application for us though. It's not beyond the realms of possibility, and it'd be a shame not to find out through lack of trying.
Anyone who has concerns about the effect of vitamin D on the calcification of soft tissue will want to read this article:
Coronary Artery Calcification Linked to Vitamin D Deficiency (http://www.renalandurologynews.com/Coronary-Artery-Calcification-Linked-to-Vitamin-D-Deficiency/article/141373/)
- George
Quote from: newguy on August 10, 2009, 02:57:29 PM
If the possible application for LDN in peyronie's disease is to impact the inflammatory response, then it will be pretty easy to tell if it isn't has an application here. If someone takes it for two or three months and experiences no change then it likely isn't for them. If multiple people try it with no positive response then I guess its positive effects don't stretch to peyronie's. Hopefully it will hold an application for us though. It's not beyond the realms of possibility, and it'd be a shame not to find out through lack of trying.
That is exactly how I feel about it. Can't hurt, might help and there is enough information suggesting that it might help to make it worth a shot.
Quote from: skunkworks on August 11, 2009, 10:19:31 PM
That is exactly how I feel about it. Can't hurt, might help and there is enough information suggesting that it might help to make it worth a shot.
Agreed, I'm looking forward to those trying LDN getting back to us with their thoughts soon.
I see after reading
this post (http://www.imminst.org/forum/index.php?showtopic=18073&view=findpost&p=340727) that the full text of the "Low-dose naltrexone for disease prevention and quality of life"
paper is available (http://www.ldn4cancer.com/.../ldn_for_disease_prevention_quality_of_life.pdf) (PMID 19041189 (http://"http://pubmed.gov/19041189")).
I've just started reading it; I find it well written, interesting, and potentially applicable for Peyronies Disease. Excerpt:
QuoteRecent studies have shown BE [beta-endorphin, which LDN raises] concentration in circulating
blood cells to be dramatically low in rheumatic diseases such as
arthritis, lupus and gout, with significant inverse correlations between
BE and both rheumatoid factor and erythrocyte sedimentation
rate and hence the likelihood of inflammation [25]. Levels of
BE were as low as 1/8 to 1/4 normal in other autoimmune-related
diseases, including fibromyalgia [26], Crohn's disease [27], multiple
sclerosis [28], chronic migraine [29] and cluster headaches
[30] and endometriosis [31].
[...]
Recent work on collagen-induced arthritis in rats have found BE
treatment to reduce clinical arthritis manifestations by shifting the
balance of TH-1 and TH-2 cells toward TH-2. This comes from
down-regulating the NF-kappa2 pathway, including tumor necrosis
factor alpha, Interleukin-1beta, Interleukin-6, inducible nitric
oxide synthase, and mRNA for matrix metalloproteinase-2 and
mmp-9 [32]. Dr. Sacerdote and her colleagues in Milan have
reached the same conclusion that BE increases ameliorate autoimmune
diseases by suppressing TH-1 and augmenting TH-2 cells[33].
So, are circulating levels of beta-endorphins low in our case, as would be expected if there is a strong autoimmune component to Peyronies Disease?
For further reading about its effect in mood and focus, there is
another good thread (http://www.mindandmuscle.net/forum/index.php?showtopic=35964&pid=514553&mode=threaded&start=#entry514553) I googled at mind and muscle.
s&s
Im looking into getting L-arginine, What dosage and frequency should i take?
also, i talked to my urologist about pentox and he said he personally doesnt prescribe it, so how should i go about getting it?
In pigs, quercetin bioavailability was enhanced with MCT oil (http://www.google.com/url?sa=t&source=web&ct=res&cd=1&url=http%3A%2F%2Fjournals.cambridge.org%2Fproduction%2Faction%2FcjoGetFulltext%3Ffulltextid%3D946880&ei=uIaDSovBAZPoMa3LnO0E&usg=AFQjCNEu4at-nynlBAGuZamJqZQ3ar13gA&sig2=v0XZhT43VU9LuuC9EITW4g). Quercetin seems to enhance curcumin's bioavailability too. Time for a curcumin and quercetin in coconut oil nightcap.
Interesting about it being more bioavailable in oil. I had been taking it in pill form 15 mins before taking curcumin with oil. Silly me. I may as well just add them both. Also, maybe it'd make sense to add Genistein too, though best to give piperine a miss unless for those taking other supplements/medications:
http://www.delano.com/ReferenceArticles/curcumin-enhancement.html
Genistein study:
QuoteOBJECTIVE: To observe the effects of Genistein on TGF-beta1 expression and the intracellular free Ca2+ concentration in human hypertrophic scar fibroblasts, and to discuss the mechanism of the anti-fibrosis effect. METHODS: Fibroblasts were derived from human hypertrophic scar tissue and cultured in vitro. Genistein in different concentrations (25, 50, 100 micromol/L) was administrated to the fibroblasts, respectively. After 48 hours of co-culture, the expression of TGF-beta1 mRNA and protein were examined by RT-PCR and Western-Blot assay respectively. The intracellular free Ca2+ concentration in hypertrophic scar fibroblasts pretreated by Genistein was determined by laser confocal scanning microscopy with or without the stimulation of bFGF. RESULTS: Genistein inhibited the expression of TGF-beta1 in hypertrophic scar fibroblasts on a concentration-dependent manner. bFGF significantly elevated the intracellular free Ca2+ concentration, however its stimulating effect was remarkably alleviated when the fibroblasts were pre-treated by Genistein. CONCLUSIONS: Genistein can reduce the expression of TGF-beta1 and block the accumulation of intracellular free calcium induced by growth factors. It maybe one of the possible mechanisms of Genistein's antifibrosis effect.
-
http://www.ncbi.nlm.nih.gov/pubmed/19119629?ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
Hey guys despise here. I have been really busy lately and well im trying to do more treatment for my peyronies disease. Only problem is I don't have the time to read up on all of this and catch up. Basically all im taking right now is Vitamin E 400 full spec gama beta's either once or twice a day, Vitamin D3 1000 once a day. I'm 18 with peyronies and am trying to do the best I can for it but sadly this is all I have been doing so far. What other vitamins or anything should I also be taking? I want to start taking the best oral supllements etc... I possibly can and do a lot of physical exercise. Help would be really appreciate thanks!
can someone let me know more about LDN and if they have :
1) used it
2) the results
3) if positive where do i buy it
im needing some other meds other than pentox and others here in the forum
pLEASE!!!
Quote from: MasterShake on August 12, 2009, 10:12:08 PM
Im looking into getting L-arginine, What dosage and frequency should i take?
also, i talked to my urologist about pentox and he said he personally doesnt prescribe it, so how should i go about getting it?
Try showing your current Uro the study I have attached. It shows positive results for using pentox for Peyronie's and may help persuade him to prescribe it. Failing that, ask your urologist to refer you to someone who does prescribe Pentox.
I really have no idea why a uro would not prescribe. It's cheap, has low toxicity and much like vitamin E, it can't hurt. Some of these urologists are a real disgrace to the medical profession.
I'm not sure about L-arginine dosage. The brand I take says you can have 500 mg 3 times a day for a total of 1,500 mg/day. Hope that helps.
Best,
Skjald
Attachment deleted from this post - It can be found at this link https://www.peyroniesforum.net/index.php/topic,772.0.html
Hawk
Some uros simply have a policy set in virtual stone that they do NOT prescribe off label period. They will, however, usually be more than willing to grant a referral to a Peyronie's doc who WILL prescribe Pentox and they will have no problem at all following you up once the Peyronie's doc has given his blessing to Pentox. I think they will be more flexible over time in this regard. So what we need to know from MasterShake is what area he is in. That way someone in his area can point him to a doc in his region that does Pentox. - George
Quote from: Skjaldborg on August 13, 2009, 11:21:06 AM
Quote from: MasterShake on August 12, 2009, 10:12:08 PM
Im looking into getting L-arginine, What dosage and frequency should i take?
also, i talked to my urologist about pentox and he said he personally doesnt prescribe it, so how should i go about getting it?
I'm not sure about L-arginine dosage. The brand I take says you can have 500 mg 3 times a day for a total of 1,500 mg/day. Hope that helps.
Attachment deleted from this post - It can be found at this link https://www.peyroniesforum.net/index.php/topic,772.0.html
Hawk
I'm taking 3g per day (three 1000mg tablets). And, I actually can't defend why I take that dosage. I'll check some older posts because that is why I picked that dosage.
That being said, Skjaldborg gave me a good idea . .. read the label. So, I'll check that tonight.
Also, it's time for me to reorder L-arginine, and I think I'll try the S.A.N. Vasoflow brand because of what others have posted about this brand on the forum.
I've been ordering L-Argnine from puritanspride.com, but I'll have to go elsewhere for the Vasoflow.
CF
Quote from: newguy on August 13, 2009, 12:13:54 AM
Interesting about it being more bioavailable in oil. I had been taking it in pill form 15 mins before taking curcumin with oil. Silly me.
To enhance bioavailability even further: mix lecithin in water, stir, let sit for a few minutes, stir again. Mix up the curcumin (2g) and quercetin (1g) in coconut oil (2-3 tablespoons). Pour the oil mixture in the lecithin mixture and stir. You'll see the oil dispersed in the water due to the surfactant action of the lecithin. Breaking up the oil mixture into little beads should help absorption.
Hmm, perhaps adding vitamin E would help too, judging by
this patent (http://www.freepatentsonline.com/6485738.html). While I'm at it, I may as well add my vitamins A, D3, and K2-MK4 (they do synergize, as we saw (http://blog.cholesterol-and-health.com/2009/04/tufts-university-confirms-that-vitamin.html)).
s&s
Resveratrol and curcumin are apparently
involved in immune system suppression (http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1810449).
QuoteA faulty immune response plays a pathogenic role in a wide spectrum of inflammatory diseases, including hypersensitivity responses to environmental antigens (allergic disorders), false recognition of self-antigen (autoimmune diseases) and immune attack against alloantigens during transplantation. Hence, it becomes crucial to suppress the immune system to control the damage done to the self-tissues. Even though several immunosuppressive drugs are available, their mechanism of action is still not known precisely.
These results tie in well with the auto-immune theory of Peyronies Disease that has been discussed on these forums; perhaps this is why I'm getting the relief I am from curcumin and resveratrol.
If so, curcumin and resveratrol would appear to be addressing the symptoms (reducing inflammation through immune suppression) rather than the cause (auto-immune response). This situation isn't ideal, since you'd like your immune system to be robustly attacking pathogens, not weakly attacking yourself. Low dose naltrexone has the potential to address the cause, and I'm looking forward to trying it soon.
s&s
Both LDN and Vitamin D are focused on immune enhancement rather than the traditional immune suppression approach. While I believe that this is clearly the way to go, it still remains unclear whether we can get enough mileage out of this approach at this time. If we can, that would be clearly the better alternative. Immune suppression risks increased vulnerability to both infectious disease AND cancers, while the opposite is true of immune enhancement. There is currently one FDA approved immune enhancement drug targeted at MS (Copaxone), but it is so feeble as to be practically useless although many MS patients feel relief with it. A number of new immune enhancement drugs (referred to a "small molecule" drugs) are at the threshold and at least one of them will likely be available within five years. This is the future or autoimmune (and cancer AND infectious disease) treatments. They work toward FIXING the immune system and not just trying to push it out of the way. - George
I ordered 1000mg L-arginine pills and more natural vitamin e. as of this exact moment I cant get the pentox, but I'm going to try calling other urologists as soon as possible, but in regards to it, how many miligrams are the pentox dosages and how frequently?
Do you guys think thers any more chance of improvement just by adding the l-arginine into my vitamin e regime?
also the dr. who doesnt prescribe pentox is dr. Sadeghi at the Hackensack med center in NJ, and he seems to know A huge amount about peyroines. He told me if i do get pentox and l-arginine he would like to know how it works for me tho, and have follow up appts. Im currently in upstate NY in sullivan county, 2 hours north of nyc, and soon relocating for the semester to Oneonta NY, near albany and bighamton.
I've got an apt with my Men's Health doctor, Dr. Mariano, in Monterey, CA in October. He's been succesful in getting my Testosterone up and some other good things as he goes about treating what he considers my adrenal fatigue, but I'm also going to talk to him about LDN. From what I'm reading here and elsewhere, it could be of use in addressing both my Peyronie's and my Vitiligo, which is an auto-immune skin disease. I'll be sure to report back his thoughts on the subject. He's a behavioral neuroendocrinologist, psychiatrist and nutritionist, so I'm sure he'll have some thoughts on LDN, the question is can I comprehend what he tells me!
Nemo
just bought some tumerick - they say its meant to be a great anti inflammatory - lets see what happens.
I trialled stopping curcumin for a day and only taking quercetin. Result: pain and inflammation started up again. But my mild sore throat cleared up.
So, despite quercetin's potentially beneficial interactions with collagen, it also upregulates the immune system. One possible conclusion (and my working hypothesis) is that it pays off more to dampen down the body's immune system than it does to address the collagen issue with quercetin. I'm really looking forward to my LDN trial.
s&s
I noticed the same thing with Quercetin. It makes allergies go away, but the autoimmune stuff gets aggressive. - George
so does this mean tumeick is bad?
Hi, I have peyronie's disease...have not been to doctor but I am sure I have it by viewing pictures and reading many articles. It is all so confusing and frustrating...surely for my wife as well. I understand what's going on down there but what to do is a different story altogether. I mean, should I try vitamins? Surgery? what? I know someone will say go to the doctor...I am still pondering that aspect. What works for you guys?
Quote from: stnlycp on August 14, 2009, 06:07:04 PM
Hi, I have peyronie's disease...have not been to doctor but I am sure I have it by viewing pictures and reading many articles. It is all so confusing and frustrating...surely for my wife as well. I understand what's going on down there but what to do is a different story altogether. I mean, should I try vitamins? Surgery? what? I know someone will say go to the doctor...I am still pondering that aspect. What works for you guys?
nothing really "works" per say or else we' all wouldnt be here lol.
but in seriousness, theres a lot of things that people have tried. the first and most commonly used is Vitamin E treatment. Although I do recommend you go see urologist pronto.
Also,
anyword on how much of the L-arginine I should take when it arrives? and also, what dosages and frequency should pentox be taken at? (if it helps Im 5 ft 8in tall, and am 144 pounds)
Quote from: Iceman on August 14, 2009, 05:07:46 PM
so does this mean tumeick is bad?
Turmeric is the root and the spice. Curcumin is the extract from turmeric.
I don't think curcumin is bad at all. After getting vitamin D levels up, it's great for cancer prevention.
Taking 2g of it twice daily is quite a bit though, and it looks like part of its anti-inflammatory response comes from the way it affects the immune system.
Lately I have been looking for a doctor willing to prescribe me low dose naltrexone. It hasn't been easy, but I just made a real breakthrough. I called a local compounding pharmacy and asked if they had ever heard of it. The answer was that yes a lot of people here are using it. So I asked which local docs were prescribing it and got a list with no problems. Turns out a doc at my local medical group is prescribing it and also the lead doc at our local neurology practice. Also an alternative med doc in a town 20mins away. So if you are looking for LDN your local pharmacist might be able to give you a clue. - George
That's a great hint, George. Thanks.
First time on and looking for all advice. I live in the Dallas Fort Worth area and have been to the URO once. I have been taking 0.6 colchicine for a couple of weeks and vitamin e for a few months. My peyronies seems to have progressed rather quickly and even if it stops I still have about an 80-85 degree up curve. I have very little if any pain and erections are no problem. A sight member recommended the possibility of a referral to obtain pentoxifylline.
I am open for help. Thanks.
Pentox has helped many people on this site. Consider checking out our peyronies disease resource library, printing the studies by Dr . Lue and taking them to your urologist to aid in your request for pentox. Other than pentox and VED/traction there have been very few success stories with other treatments.
Comebackid
can tribulus help with Peyronies Disease???
For the first time in a while, I turned on the heat pad for about 20 minutes before falling asleep (I roll it into a cylinder). My plaques were noticeably softer this morning. Perhaps with the reduced inflammation my protocol now provides, the heat is more effective. A heating pad is fairly low risk, at least when set to medium. ;)
My LDN came in today. I'm going to start tonight at 2.25 mg (a half capsule).
s&s
Quote from: Iceman on August 17, 2009, 06:32:52 AM
can tribulus help with Peyronies Disease???
I was thinking about starting tribulus to fix what I believe (for me) is low testosterone that compounds the difficulties I'm having with Peyronies Disease. I haven't ordered any yet, and would be interested to hear if others on this board have had any success - if not with amelioration of your plaques or curve, at least in an increased testosterone count.
once again. dosage and frequency of pentox? anyone please help, because my mother works at a dr's office and might be able to get the dr's to write me a script for it....
400mg 3X per day. I take mine with meals. Its extended release and taking it with meals gives good coverage during the day when inflammation seems to be higher for me. Also taking it with food all but eliminates side effects for me.
I took tribulus for quite awhile. I didn't notice any effect from it, but thats me. - George
thank you george999
Quote from: George999 on August 17, 2009, 09:39:56 PM
. . . Its extended release and taking it with meals gives good coverage during the day when inflammation seems to be higher for me.
George999 and others,
Can you describe more specifically what you mean by inflammation? I'm thinking that it is distinguished from "progression" (worsening, despite the fact of any deformity consequences - improvement or not).
Is this something that you feel, physically; or, something you notice visually?
CF
For me it's when plaque areas are painful. When it happens the plaques seem harder/swollen.
I see inflammation as driving progression. I would agree with slowandsteady that severe inflammation causes pain and burning. But I also believe that low level inflammation can be painless. I also believe that the palpable "plaques" are not actually plaques, but are pockets of inflamed tissue. I believe the actual plaques are tissue that is not distinguished so much by its thickness as by its inability to stretch and flex. I realize that this represents a rather unorthodox view, but these are my perceptions, that inflammation as it travels through tissue in waves of "plaques" leaves behind the actual plaque that is simply trashed tissue which is no longer supple and stretchy like it once was, but is as lifeless as an old rag. In the early stages of Peyronie's people can have "plaques" and no deformity, BUT that inflammation will eventually lead to deformity if not quickly controlled. On the other hand, some people never have "plaques". They experience low level inflammation and only observe progressive deformity. This is why I believe that cranking down on inflammation needs to be the first priority for the Peyronie's patient. This is why I so value Pentox and vitamin D and why I am rather hopeful about LDN. Pentox is an immuno-suppressant while Vitamin D and LDN are immuno-modulators. Immuno-modulators would be superior to immuno-suppressants since they leave other important immune functions unhindered. But it is not yet clear whether currently known immuno-modulators are capable of sufficiently suppressing inflammation. - George
Quote from: slowandsteady on August 17, 2009, 06:06:34 PM
For the first time in a while, I turned on the heat pad for about 20 minutes before falling asleep (I roll it into a cylinder). My plaques were noticeably softer this morning. Perhaps with the reduced inflammation my protocol now provides, the heat is more effective. A heating pad is fairly low risk, at least when set to medium. ;)
My LDN came in today. I'm going to start tonight at 2.25 mg (a half capsule).
s&s
Looking forward to hearing updates re LDN. What are your treatment goals though? Better erections, less curvature, diminishing of plaque size?
Quote
Looking forward to hearing updates re LDN.
Me too. I think the primary aim of LDN would be to reduce or elimination inflammation. If this occured then in theory at least further damage would not occur (or would be diminished) which would ensure that the condition didn't worsen beyond the damage already done. Without inflammation the body might be able to better repair the damage that has already taken place. In addition to that, the oral supplements and mechanical treatments (VED etc) would likely be better able to do their job too. I would think that pentox would be even more useful in conditions where inflammation is not continuous in nature. It' hard to repair existing damage, when the inflammatory process shows little sign of ending. If we had better control over the inflammatory phase, then there would be much less risk at exploring other options (injections etc) because if anything nasty started to occur it could be snuffed out pretty quickly.
I joined a pretty active LDN yahoo group to have a nose around. Unfortunately there are no posts relating to peyronie's or similiar conditions, so it's a bit of a shot in the dark. It is useful in a great number of autoimmune conditions though, so we're bound to learn something from trying to it. If it is of use to us it will put us in a powerful position to be able to better deal with this conditon. If it isn't, we'll continue our search and stick with what we know.
Well, last week I had some pain in the groin region very similar to my first bout of what I assumed to be Peyronies Disease, and I decided to take some L-arginine and vitamin E to ease the pain and help the healing process. Well, I took 500mg of l-arginine during the day but later decided to take 1 vitamin E pill and some l-arginine before bed. Later I awoke dizzy and just feeling overall strange, and as if I hadn't even slept. Over the course of the next couple of days I started to feel very strange, my vision became "snowy," and I can't seem to focus. I am not sure what is happening and I really just want it to go away, it has happened before when taking these but it has never lasted so long. I know that in any possible way that the amount my blood pressure was lowered could not cause any brain damage or anything of the sort, but I am just worried that I have caused something catastrophic in general. Has anyone else felt this way while taking these supplements?
I know stress can manifest itself in the body a number of ways and I feel like this is one of them. Last time I felt this way, a talk with my brother made everything subside over the next day or two after talking with him. He is training to be a nurse and put some things in perspective. But I am still not sure. I just feel very disconnected. Any help or advice is appreciated.
QuotePentox is an immuno-suppressant while Vitamin D and LDN are immuno-modulators. Immuno-modulators would be superior to immuno-suppressants since they leave other important immune functions unhindered.
My thoughts exactly. I took my first LDN dose last night (about 2.5 mg). To be honest, I didn't notice much. I'll try 4.5 mg tonight. I did manage to get a prescription for it, so I'll see if how a version made by a local compounding pharmacy (this one happens to be transdermal) is different from the overseas version.
Still thumbs up on the heat treatment. This might make a difference over time.
s&s
Quote from: RichB on August 18, 2009, 04:15:32 PM
Well, last week I had some pain in the groin region very similar to my first bout of what I assumed to be Peyronies Disease, and I decided to take some L-arginine and vitamin E to ease the pain and help the healing process. Well, I took 500mg of l-arginine during the day but later decided to take 1 vitamin E pill and some l-arginine before bed. Later I awoke dizzy and just feeling overall strange, and as if I hadn't even slept. Over the course of the next couple of days I started to feel very strange, my vision became "snowy," and I can't seem to focus.
Rich, I would not be too worried about this at this point. But I would make an appointment with the doctor to discuss it. I don't see how either Vitamin E or L-arg could cause something like this, but the vision issue troubles me a bit. The risk is that there may be something going on that is completely unrelated to the supplements and that perhaps taking them is unmasking something that needs to be checked. I don't think its an emergency or cause for any huge concern, but I do think it needs to be checked out. Also if you are taking certain heart/hypertension meds, they just might interact in a bad way with the L-arg. - George
Quote from: George999 on August 18, 2009, 09:14:33 PM
Quote from: RichB on August 18, 2009, 04:15:32 PM
Well, last week I had some pain in the groin region very similar to my first bout of what I assumed to be Peyronies Disease, and I decided to take some L-arginine and vitamin E to ease the pain and help the healing process. Well, I took 500mg of l-arginine during the day but later decided to take 1 vitamin E pill and some l-arginine before bed. Later I awoke dizzy and just feeling overall strange, and as if I hadn't even slept. Over the course of the next couple of days I started to feel very strange, my vision became "snowy," and I can't seem to focus.
Rich, I would not be too worried about this at this point. But I would make an appointment with the doctor to discuss it. I don't see how either Vitamin E or L-arg could cause something like this, but the vision issue troubles me a bit. The risk is that there may be something going on that is completely unrelated to the supplements and that perhaps taking them is unmasking something that needs to be checked. I don't think its an emergency or cause for any huge concern, but I do think it needs to be checked out. Also if you are taking certain heart/hypertension meds, they just might interact in a bad way with the L-arg. - George
I actually think I may have an on and off sinus infection that has gone on for quite some time. I think I'll take your advice and get it checked out.
Just as a quick recap, recommended oral treatments include:
pentox
trazodone
viagra
l-arginine
vitamin e
vitamin d3
Acetyl L-Carnitine (ALC)
horny goat weed
maca powder
cocoa
aloe vera
possible:
low dose naltrexone
what have i missed?
skunkworks,
I would add ALC and Vitamin D3
I find taking pycnogenol with l-arginine makes it many times more effective. For stopping inflammation, curcumin mixed in oil is tops.
LDN day 2: I went with 4.5 mg last night. I am having the sleep disturbances people who start LDN talk about, and a little night sweating. I'm not too worried about those symptoms since they usually resolve over a couple of weeks.
My last curcumin was yesterday morning. I may be getting the beginnings of relief from the LDN already. Lately I've been having some minor finger joint pain but not this morning.
I'm going to try getting some D-phenylalanine. It keeps endorphins around longer, so may be somewhat immunomodulatory too.
s&s
Quote from: slowandsteady on August 19, 2009, 08:45:48 AM
I find taking pycnogenol with l-arginine makes it many times more effective. For stopping inflammation, curcumin mixed in oil is tops.
LDN day 2: I went with 4.5 mg last night. I am having the sleep disturbances people who start LDN talk about, and a little night sweating. I'm not too worried about those symptoms since they usually resolve over a couple of weeks.
My last curcumin was yesterday morning. I may be getting the beginnings of relief from the LDN already. Lately I've been having some minor finger joint pain but not this morning.
I'm going to try getting some D-phenylalanine. It keeps endorphins around longer, so may be somewhat immunomodulatory too.
s&s
From what I have read if the side effects are bothering you enough that they cannot be ignored, drop the dose for hte first few weeks. Most actually recommend starting o the 2.5 or 3mg dose and then building up.
Quote from: skunkworks on August 19, 2009, 09:55:00 AM
From what I have read if the side effects are bothering you enough that they cannot be ignored, drop the dose for hte first few weeks. Most actually recommend starting o the 2.5 or 3mg dose and then building up.
I dropped to 1.5 mg last night and slept well. I read that the mood effects of LDN show up quickly, but the autoimmune effects are optimally effective after 4-6 months.
s&s
That's quite a long time. Hopefully it would be somewhat incremental. If not, should it have a role in the fight against peyronie's it might be so slow at kicking in that it could partially render itself ineffective anyway. It will be interesting to see if you do start experiencing some level of relief though of course. That is my hope. I don't know how realistic that hope is though. Fingers crossed.
EDIT: For those interested in exploring LDN further, there is a very activate yahoo group relating to it here: http://health.groups.yahoo.com/group/lowdosenaltrexone/
I would most certainly be willing to wait 6 months for benefits from LDN. I am willing to wait 5 years for benefits from vitamin D. But I suspect their will be an incremental aspect. Additionally, I think it is a mistake to focus on just a reduction in deformity and not pay more attention to the value of inflammatory relief AND potential protection from even more life threatening diseases. I found this blog very interesting:
http://blog.impactwp.com/?p=473 (http://blog.impactwp.com/?p=473)
One thing that makes this drug extremely interesting to me is the fact that it is known for working on a number of diseases that other extremely expensive and highly touted drugs fail at controlling. The shear breadth of diseases that it has been reported to be helpful with gives me much hope that we will also benefit. At this point I am just waiting for a series of MRIs followed by an appointment with a local neurologist who is known to support the use of LDN. I am thinking that I may be able to actually get off the Pentox and shift completely over to LDN at that point, but we will see how that works out. - George
George - LDN certainly appears to be hold promise in a vast number of autoimmune conditions. We can only hope that it is of use for peyronie's. I'm sure its positive use for us is an question that wll eventually be answered, and I really do hope that it works. I could've perhaps of phrased my previous message better. My concern was that 4-5 months is a long time for inflammation to be occuring for, and as such if LDN does work but takes that long to reach its full potential, for many men it may well mean that it's actually too late to prevent serious damage from occuring. Of course this is all guesswork, but that was my concern. If it works at all for peyronies that would of course be something I welcome.
Quote from: newguy on August 20, 2009, 09:05:23 AM
That's quite a long time.
Well, that's for "optimally effective". I expect to get relief before that. I've been able to taper off my curcumin to about 750 mg.
Some quotes from the yahoo group (http://health.groups.yahoo.com/group/lowdosenaltrexone):
QuoteI had RA for almost 11 yrs. I have not had any medication in the last 4 yrs. I started LDN on March 2nd. I took 1.5mg for 2 weeks and I did great, mainly the stiffness was significantly less.
QuoteI've been on LDN for only two weeks, but am having less pain. I have fibro + CFS with some thyroid issues thrown in.
Quote
I have been taking LDN for two weeks for CFS; I have had great improvement in myhealth.
QuoteIve been on LDN for about two weeks [for multiple sclerosis] and I am thrilled. I no longer wake
up with that awful pain in my legs and feeling like the tin man.
QuoteThe bottom line is that after only 2 weeks on ldn,I have a quality of life.[person with MS]
So it looks like there can be a great response after two weeks followed by peak improvement after 6 months. Here's hoping.
s&s
I agree completely. There has to be effectiveness against inflammation immediately for this to be of value. From what I know about the way it works, I would be surprised if it does not achieve this handily. All these other things it is being used for are inflammation driven and it is getting a lot of rave reviews. I see no reason why it wouldn't be just as effective against Peyronie's inflammation, but I guess there is always the possibility of an exception to the rule. But lets indeed hope it does for us what it is doing for so many others. - George
I bumped on the article somehow, seems interesting but is a Rx type 2 diabetic drug
http://www.ncbi.nlm.nih.gov/pubmed/16831155
http://www.biomedexperts.com/Abstract.bme/18445362/Effects_of_pioglitazone_on_erectile_dysfunction_in_sildenafil_poor-responders_a_randomized_controlled_study
This does not look like something particularly useful for Peyronie's to me BUT it does look like something potentially VERY useful for corporal fibrosis, and thus is a real cool find. Anyone with a corporal fibrosis problem should be looking closely at Low Dose Pioglitazone. Since it is seemingly a custom low dose formulation, it would probably have to be formulated by a compounding pharmacy. The trade name for the base drug is " Actos". Its a relatively new "on patent" drug meaning it is likely expensive, but certainly, an off label prescription might be possible. - George
A quick update on the LDN. I'm finding that half the contents of a 4.5 mg capsule to be a nice dosage. I'm still adjusting to it's effects at night with the lighter sleep and more vivid dreams. As long as I don't short change my self on sleep hours I feel fine the next day. On doses of 3mg and up I feel a bit blah the next day, so that might be indicating a bit too much antagonism of my opiate receptors.
I had some inflammation yesterday, but I think that's because I dosed 2g of ALC; perhaps I just don't need that much. No inflammation today.
One nice benefit: my recovery from exercise is noticeably quicker. I'm building up my push up numbers, and I was only a little sore the day after I added more to my total. Maybe when one's body isn't so busy fighting itself it has energy left over.
My mood is subtly enhanced too, which is quite nice. I'd be willing to bet that low endorphin levels are correlated with Peyronies Disease.
s&s
George999 and others,
What oral treatments should be used to keep down or eliminate inflammation, and should they be used when one is not experiencing inflammation?
CF
slowandsteady - Thanks for the LDN upates. It sounds like it's giving you some benefits already (exercise recovery etc). In your view is the jury still out on its effectiveness for peyronie's? I want to get a few solid opinions before going down this route myself. Being that the forum structure has made it a possibility, maybe we should create a Low Dose Naltrexone thread?
I can't help but notice that you've mentioned a couple of times now that ALC has possibly been the cause of inflammation for you. I wonder if this is common at doses at that level. Do you take it with Alpha Lipoic Acid?
Quote from: cowboyfood on August 22, 2009, 03:36:46 PM
George999 and others,
What oral treatments should be used to keep down or eliminate inflammation, and should they be used when one is not experiencing inflammation?
CF
My personal opinion on this is that IF you have Peyronie's, you HAVE an inflammation problem whether you are experiencing pain or not. And personally, I think the
major keys at this point are
1) vitamin D3 in softgel form. I would get vitamin D levels tested and boost vitamin D levels up to 50-70ng/ml UNLESS you also have known prostate cancer issues. In any case, IF you do work on getting your vitamin D levels up, I would watch the vitamin D level with periodic testing, watch serum calcium levels with periodic testing, and watch PSA levels with periodic testing. I would also get a traditional prostate exam before and during. Some of us around here are more concerned about vitamin D possibly promoting prostate cancer than others. I am less concerned than most. I think there are other factors involved in aggressive prostate cancer that we should be more concerned about such as: Obesity Tied to Prostate Cancer Recurrence (http://www.healthday.com/Article.asp?AID=630092) But it is an issue, so be forewarned. There is that risk, but I believe there is a greater risk from having depressed vitamin D levels. 50-70ng/ml is the typical reading found among people who get plenty of sun and I believe that level represents what should be the norm. There is a lot of disagreement on this right now, but there is more and more evidence that vitamin D is hugely anti-inflammatory and is an immuno-modulator which is the best tonic for a failing immune system.
2) Pentoxifylline. I really believe that at this point Pentox is still pretty much the gold standard when it comes to anti-inflammatory treatments for Peyronie's. It is an immuno-suppressant that is very effective at knocking down the inflammation associated with Peyronie's. I highly recommend it. It is safe, easy to take, inexpensive, with few and mild side effects. It has a long and proven track record as a drug. I really can't say enough good things about it. Some will have a problem with it because if you have major immune deficiency problems you will likely have problems with any immuno-suppressant.
As for the future, I believe that LDN is promising since it is pretty much a proven immuno-modulator that is showing itself effective in dealing with a number of auto-immune diseases. Additionally, it is being shown useful in treating infectious disease (HIV/AIDS) AND cancer. But at this point we know nearly nothing about its actual impact on Peyronie's which a handful of guys on this forum are currently exploring. So you will also want to key an eye on that one. Those are the major oral options out there right now. Of course I could add to the list a string of bit players from ALC to Mangosteen juice etc. That list is endless and different things on that list will likely prove helpful to different people. But the same thing that helps one person might not help another. That is why I favor the use of vitamin D and Pentox. - George
Quote from: slowandsteady on August 22, 2009, 02:44:14 PM
I had some inflammation yesterday, but I think that's because I dosed 2g of ALC; perhaps I just don't need that much. No inflammation today.
What would lead you to consider ALC an inflammatory. That seems to be contrary to research and most anecdotal accounts here.
Quote from: George999 on August 22, 2009, 08:38:52 PM
personally, I think the major keys at this point are 1) vitamin D3 in softgel form.
Why do you put that much stress on gelcap form?
Quote from: Hawk on August 22, 2009, 09:14:50 PM
Quote from: George999 on August 22, 2009, 08:38:52 PM
personally, I think the major keys at this point are 1) vitamin D3 in softgel form.
Why do you put that much stress on gelcap form?
Because I have read accounts by doctors complaining that they were unable to get patients blood levels up with the dry form and thus consider it to have problems with assimilation. I think that is a serious red flag. I also think the fact that so many people are on fosomax after years of taking dry D with calcium indicates that something is wrong with this approach. It has always been attributed to lack of assimilation on the part of the calcium, but I suspect the real problem was that patients were not assimilating the dry D which led to problems assimilating the calcium. I definitely do not trust the traditional dry form of vitamin D to be biologically available and thus warn people to use the oil based softgels instead. - George
Quote from: Hawk on August 22, 2009, 09:12:52 PM
Quote from: slowandsteady on August 22, 2009, 02:44:14 PM
I had some inflammation yesterday, but I think that's because I dosed 2g of ALC; perhaps I just don't need that much. No inflammation today.
What would lead you to consider ALC an inflammatory. That seems to be contrary to research and most anecdotal accounts here.
I have had similar experience with ALC. Mainly it seems to be anti-inflammatory, but at times its seems to do just the opposite. I used it successfully for years, but consider Pentox to be a lot more reliable. I would not discourage its use, I believe it is generally helpful, but would caution users to be aware of a possible underlying Jekyll and Hyde factor in rare cases. - George
I have used over 3G of ALC daily and have been far more on-again off-again with ALC than I am most supplements. I have never seen anything out of ALC except clear indications of its ant-inflammatory effect. I have only seen documentation from clinical trials that it mitigated inflammation in everything from heart, arterial, peyronies, muscular, and induced inflammation in rats.
I would have to believe ALC preceding inflammation had nothing to do with that inflammation. I think it is far more likely that the inflammation was the result of a subtle unidentified environmental, dietary, or internal agent or process that was independent of ALC (possibly even held in check by the ALC)
Hawk, I certainly don't question your experience. But I am reporting my experience and you can doubt it or try to explain it if you like. On multiple occasions I experienced a relief from inflammation when stopping ALC. Now that may represent multiple coincidences, I really don't know. But I have had no such experience with Pentox and thus view it as being more dependable from my own experience. If someone is getting benefit from ALC, I would certainly recommend they keep on using it, but if things start to go down hill, I would recommend that they try to shift over to Pentox. But you are certainly correct in stating that there is not a shred of objective evidence to indicate that ALC might be inflammatory. Not a shred. - George
George, I do not doubt your experience in the least. I do doubt your conclusion in this instance and I generally doubt the established unreliability of anecdotal accounts. Because of the millions of unidentified issues that impact our bodies, anecdotal accounts as you know are unreliable. Hundreds of posts keep reminding us of that. It is obvious that we are oblivious to these millions of variables that impact upon our bodies daily. We seldom even put stock in a clinical trial with small groups for that very reason. If assessing "A precedes B so DOES A cause B" were that easy to conclude, research would be child's play.
I certainly would trust my own observations, but I would never ever trust my own conclusions that ALC is anti-inflammatory just because it seemed so to me. For that conclusion I would have to find supporting evidence to evaluate and that is all I was looking for in this case.
We always have to force ourselves to go back to objectivity and evaluating hard evidence as summarized on our PDS web Site. It cannot be read in its entirety too many times.(Thanks in large part to Tim) http://www.peyroniessociety.org/evaluating.htm
I view it as one of the main purposes of this site to help the thousands who come here to step beyond the old subjective traps that muddy the evidence and deepen the mystery of Peyronies Disease.
George999 and Hawk,
Your responses are appreciated.
As I've posted before, my daily intake includes Pentox (1200 mg), D3 (but, dry not softgel), ALC, L-Arginine, Isomer Vitamin E (GNC) and Viagra.
My urologist's office is doing a blood test for me soon (the P.A. told me that, generally, many uros prefer one's "general" physician to do this or someone else). They are going to test testosterone levels at my request. I'll see if they can check Vitamin D levels, I'll bring in a hard copy of your previous post regarding this.
I'll switch to D3 softgel; I saw only 5000 IU available at puritan's pride. But, here is a lower dosage by Jarrow at Vitamin Shoppe: http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=JF-7339
CF
Quote from: Hawk on August 22, 2009, 09:12:52 PM
What would lead you to consider ALC an inflammatory. That seems to be contrary to research and most anecdotal accounts here.
I get pain with 2g. I wonder if it's better taken when one isn't having pain. Perhaps 2g for me is on the other side if the U curve. How much do you weigh? I'm at 145 with about 12% body fat.
George999,
based on your reply, it sounds like I (and, others) should assume we are in an inflammatory state. This sounds like a wise and "aggressive" viewpoint in my opinion, and one that I agree with.
In my own case, I don't understand how I can tell whether I am literally in an inflammatory state or not.
Are there any traditional symptoms of inflammation? I'll guess that pain and discomfort are symptoms. But, they are also symptoms from the VED treatment (from "overpumping").
CF
Quote from: cowboyfood on August 22, 2009, 11:00:38 PM
I'll switch to D3 softgel; I saw only 5000 IU available at puritan's pride. But, here is a lower dosage by Jarrow at Vitamin Shoppe: http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=JF-7339
Now Foods produces D3 softgels in 400IU, 1000IU, 2000IU and 5000IU potencies. - George
Quote from: cowboyfood on August 22, 2009, 11:00:38 PM
I saw only 5000 IU available at puritan's pride. But, here is a lower dosage by Jarrow at Vitamin Shoppe: http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=JF-7339
Cowboy, just go to Puritan and type
D it the search box. It takes you to this page http://www.puritan.com/d-vitamins-534?searchterm=d&rdcnt=1 Puritan has 400 IU, 1000 IU, 1200 IU, and 5000, IU gel caps all on this page. Right now they are running their best buy one get 2 free sales.
cowboyfood - Since many men experience sudden curvature without any symptoms of pain I think it's safe to say that it's possible to have damaging low level inflammation without ever being aware of it. This makes sense as people experience all kinds of health problems due to inflammation without necessarily being in noticable pain. It therefore follows that it's possible that those who experienced pain from peyronies and are now pain free are not actually inflammation free. With this theory in mind I think it's useful to stay on an oral treatment regime even after symptons of pain are gone. At least for a while. Please don't take this to mean that I think that men with peyronies 'always' suffer from inflammation, as it seems to be the case that for the majority of men their condition eventually stabalises after a period of time.
Quote from: cowboyfood on August 22, 2009, 11:20:57 PM
Are there any traditional symptoms of inflammation? I'll guess that pain and discomfort are symptoms. But, they are also symptoms from the VED treatment (from "overpumping").
In other inflammatory syndromes where reversal has been achieved it has been through extremely aggressive anti-inflammatory therapy. Thus I am assuming that a continued fibrotic state is indicative of low level inflammation. - George
Hawk, Let me put it this way. If someone is taking ALC and having pain, then obviously the ALC is not doing the job regardless of what the objective data shows. So at this point it is time for them to move on, and Pentox is the obvious choice. - George
Quote from: George999 on August 22, 2009, 11:38:20 PM
Hawk, Let me put it this way. If someone is taking ALC and having pain, then obviously the ALC is not doing the job regardless of what the objective data shows. So at this point it is time for them to move on, and Pentox is the obvious choice. - George
George you know better than make that conclusive statement. Why do trials have controls? Because the control group could exhibit the same, a better, or a worse response than the study group. You can conclude ALC did not stop the inflammation at that dose for that duration. You cannot however conclude that it did not reduce the pain over what it would have been and you surely cannot conclude it caused the pain.
Quote from: newguy on August 22, 2009, 03:43:30 PM
slowandsteady - Thanks for the LDN upates. It sounds like it's giving you some benefits already (exercise recovery etc). In your view is the jury still out on its effectiveness for peyronie's?
Still too early to say. Things should be more clear by the middle of next week.
Quote from: cowboyfood on August 22, 2009, 11:20:57 PM
Are there any traditional symptoms of inflammation? I'll guess that pain and discomfort are symptoms. But, they are also symptoms from the VED treatment (from "overpumping").
Quote from: George999 on August 22, 2009, 11:34:43 PMIn other inflammatory syndromes where reversal has been achieved it has been through extremely aggressive anti-inflammatory therapy. Thus I am assuming that a continued fibrotic state is indicative of low level inflammation. - George
Which conditions? Do you have a link to any write ups of such a reversal?
What did they use to fight the inflammation?
I always thought that in the case of auto immune diseases, the inflammation was a symptom of the disease rather than the disease itself.
Quote from: skunkworks on August 23, 2009, 02:08:46 AM
I always thought that in the case of auto immune diseases, the inflammation was a symptom of the disease rather than the disease itself.
I think your understanding was always the assumption but in recent decades research has indicated more and more that inflammation is, or at least triggers, many diseases rather than simply being a symptom of the disease. Interestingly enough it seems to be the root of both coronary disease and cancer along with a host of autoimmune diseases.
Inflammation is produced when the body's immune system damages the body's own tissue. To some point this is inevitable as the immune system does its job. But when the immune system is not appropriately focused in its attacks, body tissue suffers excessive damage. This is what is referred to as the autoimmune factor. In order to stem this damaging process, the traditional treatment has been to suppress the immune system. This has the effect of relieving inflammation, but it also leaves the body more vulnerable to things the immune system is designed to deal with from alien invaders (viral, bacterial, parasitic, fungal, etc) to the body's own deviant cells (cancer, etc). Thus a better approach is to refocus the immune system which is the point of vitamin D, LDN, and a number of what are referred to as "small molecule" drugs currently making their way through trials. Suppressing inflammation by either method slows or stops the progression of the disease. If the suppression is sufficient, actual reversal can occur. - George
Quote from: Hawk on August 23, 2009, 12:11:36 AM
Quote from: George999 on August 22, 2009, 11:38:20 PM
Hawk, Let me put it this way. If someone is taking ALC and having pain, then obviously the ALC is not doing the job regardless of what the objective data shows. So at this point it is time for them to move on, and Pentox is the obvious choice. - George
George you know better than make that conclusive statement. Why do trials have controls? Because the control group could exhibit the same, a better, or a worse response than the study group. You can conclude ALC did not stop the inflammation at that dose for that duration. You cannot however conclude that it did not reduce the pain over what it would have been and you surely cannot conclude it caused the pain.
Hawk, You are making precisely the mistake that most medical professionals make by
assuming that current studies are conclusive which is almost never the case. I don't know how many times new research has literally upended previous research and what doctors
knew was ultimately proven to be not quite the case. Medical knowledge is continually being refined and nuanced by new discoveries. I, for one, am not going to stand by and try to tell myself that something is working when it obviously is not and neither do I recommend that approach to anyone else. The results of well designed medical studies are strong evidence but they are
not ultimate knownlege
and even objective data show Pentoxifylline to be many times more capable of dealing with Peyronie's than ALC. I respect the capabilities of ALC. I was on it for years and was greatly benefited by it, but there came a time that I had to move on to Pentox because it was aggravating my neuropathy. Anyone dealing with a problem with ALC should know that there is a way to move on to something else that can resolve their problem. Just like people who are having a problem with Pentox need to know that it
does suppress the immune system and that vitamin D might be helpful to them in both directions. - George
Quote from: skunkworks on August 23, 2009, 02:08:46 AM
Quote from: George999 on August 22, 2009, 11:34:43 PMIn other inflammatory syndromes where reversal has been achieved it has been through extremely aggressive anti-inflammatory therapy. Thus I am assuming that a continued fibrotic state is indicative of low level inflammation. - George
Which conditions? Do you have a link to any write ups of such a reversal?
Lets look at some examples:
Reversal of cardiac fibrosis and related dysfunction by relaxin. (http://www.ncbi.nlm.nih.gov/pubmed/19416203?ordinalpos=9&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)
Renin-angiotensin inhibition reverses advanced cardiac remodeling in aging spontaneously hypertensive rats. (http://www.ncbi.nlm.nih.gov/pubmed/17586415?ordinalpos=58&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)
Mini-dose of thalidomide for treatment of primary myelofibrosis. Report of a case with complete reversal of bone marrow fibrosis and splenomegaly. (http://www.ncbi.nlm.nih.gov/pubmed/17405746?ordinalpos=73&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)
Reversal of fibrosis: no longer a pipe dream? (http://www.ncbi.nlm.nih.gov/pubmed/17162224?ordinalpos=81&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)
Reversal of chemical-induced liver fibrosis in Wistar rats by puerarin. (http://www.ncbi.nlm.nih.gov/pubmed/16426832?ordinalpos=83&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)
Halofuginone induces matrix metalloproteinases in rat hepatic stellate cells via activation of p38 and NFkappaB. (http://www.ncbi.nlm.nih.gov/pubmed/16489207?ordinalpos=84&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)
Reversal of allergen-induced airway remodeling by CysLT1 receptor blockade. (http://www.ncbi.nlm.nih.gov/pubmed/16387808?ordinalpos=90&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)
This list could go on endlessly. The point is that if you sufficiently block the inflammation, tissues do heal. Its a slow process, but it does happen. The hard part is finding ways to block stubborn inflammation without causing dangerous side effects. - George
Quote from: George999 on August 23, 2009, 11:30:53 AM
This list could go on endlessly. The point is that if you sufficiently block the inflammation, tissues do heal. Its a slow process, but it does happen. The hard part is finding ways to block stubborn inflammation without causing dangerous side effects. - George
I agree. If peyronie's sufferers are able to get a handle on the inflammation right away, in terms of either knocking it out completely, or reducing it to something the body is better able to deal with, it stands to reason that they will be in a much better position. As you rightly say there is a balancing act between trying to deal with this issue and ensure that the body doesn't become suseptable to other health problems. What we have on our side in such a scenario is the fact that if the right drug comes along we'd probably only need to knock out inflammation for a finite length of time to allow normal healing to take place, and so this window of opportunity for other health problems would be relatively small.
There are likely issues that could make my reasoning invalid (maybe "reducing" a trapped inflammation, if that's what peyronie's is, simply means that it will exist at a lower level of severity but nevertheless will not stop until it's "burned itself out" etc) but hopefully they don't hold true in reality.
Quote from: newguy on August 23, 2009, 11:54:19 AM
If peyronie's sufferers are able to get a handle on the inflammation right away, in terms of either knocking it out completely, or reducing it to something the body is better able to deal with, it stands to reason that they will be in a much better position.
There are likely issues that could make my reasoning invalid (maybe "reducing" a trapped inflammation, if that's what peyronie's is, simply means that it will exist at a lower level of severity but nevertheless will not stop until it's "burned itself out" etc) but hopefully they don't hold true in reality.
It is abundantly clear that chances of reversing Peyronie's are far greater when it is identified and treated aggressively in its earliest stages. That is what is so frustrating with the typical "wait and see" approach. I think that if Pentox was prescribed at the get go we would see a lot of Peyronie's cases cured. Once the disease progresses you have "trapped inflammation" as you describe it. It is low level inflammation within the fibrosis and it is extremely difficult to deliver enough medication to it to be effective. Delivery of therapeutic medication is dependent on blood flow, and when it is severely compromised it becomes very difficult to accomplish. At the same time, you can have a deficiency of vitamin D in these tissues even though vitamin D levels are normal on a systemic level. Inflammation consumes vitamin D and if it is being consumed faster than it can be delivered, you can have localized pockets of vitamin D deficiency. At the same time, lack of vitamin D promotes inflammation. That is why it is important to saturate surrounding healthy tissues with vitamin D to the maximum safe level. - George
Quote from: George999 on August 23, 2009, 10:57:36 AM
Hawk, You are making precisely the mistake that most medical professionals make by assuming that current studies are conclusive which is almost never the case.
What did I say to make you think I was assuming that. I made no such point. My point is the simple rational fact that some evidence is more credible and superior to other evidence whether it is a criminal investigation or medical puzzle. I think you must have fired off a response to my post without reading the page I referenced. Reading the page would have clarified that we questions many studies. In spite of that however, we do not substitute anecdotal accounts for clinical research. I am hopeful mankind has advanced beyond that stage.
I am also hopeful we no not drag members backward at the PDS by trying to disregard clinical studies with an anecdotal account.
No curcumin or ALC today, only a tiny amount of discomfort. I ran 7 miles after a very busy day that would have wiped me out before (I had built up to only 3 miles in the last few months). I had buckets of patience for the kids. I am really liking LDN.
Quote from: slowandsteady on August 23, 2009, 08:45:58 PM
No curcumin or ALC today, only a tiny amount of discomfort. I ran 7 miles after a very busy day that would have wiped me out before (I had built up to only 3 miles in the last few months). I had buckets of patience for the kids. I am really liking LDN.
It's good to know that it seems to be something of a life enhancing treatment! I do a bit of running too, so if I do start on LDN, it doesn't hurt to know that an energy boost could be a nice side effect. It's certainly positive that you may be seeing the first signs of it lessening your peyronie's inflammation too. I think we're a way off knowing this for sure, (we'd need very strong indications from multiple sources) but at least not not hearing that you're in pain. Good news.
Quote from: newguy on August 23, 2009, 11:54:19 AM
Quote from: George999 on August 23, 2009, 11:30:53 AM
This list could go on endlessly. The point is that if you sufficiently block the inflammation, tissues do heal. Its a slow process, but it does happen. The hard part is finding ways to block stubborn inflammation without causing dangerous side effects. - George
I agree. If peyronie's sufferers are able to get a handle on the inflammation right away, in terms of either knocking it out completely, or reducing it to something the body is better able to deal with, it stands to reason that they will be in a much better position. As you rightly say there is a balancing act between trying to deal with this issue and ensure that the body doesn't become suseptable to other health problems. What we have on our side in such a scenario is the fact that if the right drug comes along we'd probably only need to knock out inflammation for a finite length of time to allow normal healing to take place, and so this window of opportunity for other health problems would be relatively small.
There are likely issues that could make my reasoning invalid (maybe "reducing" a trapped inflammation, if that's what peyronie's is, simply means that it will exist at a lower level of severity but nevertheless will not stop until it's "burned itself out" etc) but hopefully they don't hold true in reality.
In that case we should all be on a low GI diet, similar to that prescribed by Dr Pericone. Insulin is one of the major factors in long term inflammation.
Now that I think about it, diabetics are considered to be at high risk for most auto immune diseases...
Quote from: skunkworks on August 24, 2009, 07:24:04 AM
In that case we should all be on a low GI diet, similar to that prescribed by Dr Pericone. Insulin is one of the major factors in long term inflammation.
Now that I think about it, diabetics are considered to be at high risk for most auto immune diseases...
BINGO!!!!
Typical lifestyles today = low vitamin D levels + lots of inflammatory foods = a sick population
Ask the right questions and get the right answer.
Bad carbs + bad fats + bad proteins = bad health
You are hitting the nail on the head!
- George
I definitely agree with the dietary point. Of course each person has their own approach of how strict they want to be, but I see it as a win-win. If dietary factors can make a meaningful difference in those with existing peyronie's, it's the right thing to do. If it makes a very marginal difference then it's still worth adhering to because diet can play a huge say in your general health. Diabetes is a risk factor in peyronie's, so it's safe to say that some men's terrible dietary habits led to them becoming diabetic, which in turn increases their risk of developing peyronie's disease.
We KNOW that diabetics are at higher risk for Peyronie's AND we KNOW that diabetics have generally poorer outcomes than non-diabetics. BUT, what about people who are "borderline"? A lot of people who are borderline are in denial. They think that because they are not outright diabetic, they are safe. ??? I suspect that by improving your blood sugar levels you will probably be improving your outcome EVEN IF you are not frankly diabetic. - George
Quote from: George999 on August 24, 2009, 11:19:29 AM
We KNOW that diabetics are at higher risk for Peyronie's AND we KNOW that diabetics have generally poorer outcomes than non-diabetics. BUT, what about people who are "borderline"? A lot of people who are borderline are in denial. They think that because they are not outright diabetic, they are safe. ??? I suspect that by improving your blood sugar levels you will probably be improving your outcome EVEN IF you are not frankly diabetic. - George
This actually crosses over into a huge topic concerning human health. There is a growing body of evidence to suggest that pre diabetic conditions such as insulin resistance and PCOS are an underlying factor in a huge list of health issues, heart disease is the notable example.
Quote from: Hawk on August 22, 2009, 09:42:13 PM
I would have to believe ALC preceding inflammation had nothing to do with that inflammation. I think it is far more likely that the inflammation was the result of a subtle unidentified environmental, dietary, or internal agent or process that was independent of ALC
I took 500 mg of ALC yesterday and had minor pain and inflammation. I did take it with 100 mg of pycnogenol. We've seen how strongly pycnogenol potentiates l-arginine (PMID 12851125 and 18037769). Perhaps it also affects ALC. The biochemistry is a bit complex for me though.
I'm still loving the LDN. Pain free today. Anyone else start it?
s&s
Quote from: slowandsteady on August 26, 2009, 01:19:17 PM
Quote from: Hawk on August 22, 2009, 09:42:13 PM
I would have to believe ALC preceding inflammation had nothing to do with that inflammation. I think it is far more likely that the inflammation was the result of a subtle unidentified environmental, dietary, or internal agent or process that was independent of ALC
I took 500 mg of ALC yesterday and had minor pain and inflammation. I did take it with 100 mg of pycnogenol. We've seen how strongly pycnogenol potentiates l-arginine (PMID 12851125 and 18037769). Perhaps it also affects ALC. The biochemistry is a bit complex for me though.
I'm still loving the LDN. Pain free today. Anyone else start it?
s&s
I may have to order it online, as have had no luck finding a doc to prescribe.
Quote from: slowandsteady on August 26, 2009, 01:19:17 PM
I'm still loving the Low Dose Naltrexone. Pain free today. Anyone else start it?
It is a shame more people aren't taking it, so that some kind of consensus could quickly be reached. I'm thinking of ordering some in a few days. I'll keep an eye out for the your updates until that time.
I will be starting it next month, currently on other prescription drugs for Low T, the protocol is ending next week probably then I will start LDN. Right now dont want to mess up with lot of Rx Drugs.
Hey guys I came across this article is there any truth to this? http://curezone.com/forums/fm.asp?i=1209418
"Dupuytren's contracture" and "Peyronie's disease" are two "fibrotic" conditions that can be helped considerably by SSKI. In Dupuytren's contracture, thickening (fibrosis) occurs along one of the tendons in the palm in the hand, pulling the related finger down towards the palm. As the problem progresses, the finger often can't be straightened any more.
In Peyronie's disease, a very similar thickening occurs along the shaft of the penis, making erections increasing "curved" and painful. In both cases, rubbing SSKI into the thickened tissue at least twice daily softens and lessens the fibrotic area over a period of several months, allowing for more normal function.
For these conditions, it's additionally helpful to take para-aminobenzoic acid (PABA) 2 grams, three times daily, and to rub a mixture of Vitamin E and DMSO into the thickened areas, also. However, if "caught early", SSKI alone will often "do the job". (It's also advisable to have glucose-insulin tolerance test done, as there's an unusually high incidence of "insulin resistance" in people with Dupuytren's contracture or Peyronie's disease.
"Keloids" are abnormally thick scars, sometimes as much as an inch thick, that can form after injury. Although anyone can get a keloid, they're more common among blacks than other ethnic groups. Rubbing SSKI into a keloid at least twice daily will ultimately flatten them down to a "normal scar", but it can take many months to a year for particularly bad ones. The treatment goes faster if SSKI is mixed "50-50" with DMSO." This is for Potassium Iodide
Quote from: George999 on August 24, 2009, 11:19:29 AM
We KNOW that diabetics are at higher risk for Peyronie's AND we KNOW that diabetics have generally poorer outcomes than non-diabetics. BUT, what about people who are "borderline"? A lot of people who are borderline are in denial. They think that because they are not outright diabetic, they are safe. ??? I suspect that by improving your blood sugar levels you will probably be improving your outcome EVEN IF you are not frankly diabetic. - George
Just had a blood workup June and my serum glucose (blood sugar?) was 76. They stated the safe limits to be 65-99. Should I be shooting for a lower level? I've eliminated practicaly all refined sugar products from my diet. I have shredded wheat (with no sugar or sodium added) for breakfast with blueberries and a small slice of banana for breakfast. Maybe a dessert on a "special occassion" (rarely). Quite a bit of other fruit (fresh peaches, mangoes, nectarines), nuts (almonds and walnuts). My total cholesterol was 146, Trigs, 74, HDL, 42. My serum calcium was 9.8. I'm wondering with this level if it would be safe to increase my D3 intake. I'm currently taking 2000 IU. (I know you're not a doctor, but realize you've done quite a bit of research in these areas and would just be interested in your opinion.)
Fred
Quote from: Fred22 on August 28, 2009, 10:57:11 AM
Quote from: George999 on August 24, 2009, 11:19:29 AM
We KNOW that diabetics are at higher risk for Peyronie's AND we KNOW that diabetics have generally poorer outcomes than non-diabetics. BUT, what about people who are "borderline"? A lot of people who are borderline are in denial. They think that because they are not outright diabetic, they are safe. ??? I suspect that by improving your blood sugar levels you will probably be improving your outcome EVEN IF you are not frankly diabetic. - George
Just had a blood workup June and my serum glucose (blood sugar?) was 76. They stated the safe limits to be 65-99. Should I be shooting for a lower level? I've eliminated practicaly all refined sugar products from my diet. I have shredded wheat (with no sugar or sodium added) for breakfast with blueberries and a small slice of banana for breakfast. Maybe a dessert on a "special occassion" (rarely). Quite a bit of other fruit (fresh peaches, mangoes, nectarines), nuts (almonds and walnuts). My total cholesterol was 146, Trigs, 74, HDL, 42. My serum calcium was 9.8. I'm wondering with this level if it would be safe to increase my D3 intake. I'm currently taking 2000 IU. (I know you're not a doctor, but realize you've done quite a bit of research in these areas and would just be interested in your opinion.)
Fred
A glucose response test would be a far better indicator of where your body is at with glucose and insulin related inflammation. For instance, I had a fasting glucose of 5 (normal range 3-6) yet after a meal it would jump to 17 for around 4-5 hours. You can see why testing serum glucose is just not enough.
On the diet thing I'm only going to post generally.
Ditch the shredded wheat, eat a lot more protein. Best to eat protein before you eat anything else, especially fruit.
Fred22 - If you've cut out refined carbs then in my view you've struck a good balance. You could drop some of the fruit in exchange for vegetables as they tend to have less sugars, but in practical terms whether this will change anything is unknown. If it doesn't offer any peyronie's specific benefits, it's still of course sensible to have a healthy diet.
Overcomer - That message conains a little bit of everything. PABA and DMSO have been talked about extensively on the board. Lots of treatments potentially have their place, but the "curezone" page makes it all sound rather straightforward when in reality it isn't. You're best off looking at actual studies really and experiences from others here, and drawing conclusions based on that.
I eat a fairly low carb diet (usually below 80g/day, and often less). I've come to the conclusion that pre-diabetes doesn't cause Peyronies Disease, but does make it worse. In general I think that anything inflammatory will make it worse. For many people that would include gluten.
Another test to consider is glycated hemoglobin (hemoglobin A1c). Increased blood sugar (especially fructose) causes glycation over time, so H-A1C will give a good moving average perspective of blood sugar.
s&s
Quote from: newguy on August 28, 2009, 11:26:54 AM
Fred22 - If you've cut out refined carbs then in my view you've struck a good balance. You could drop some of the fruit in exchange for vegetables as they tend to have less sugars, but in practical terms whether this will change anything is unknown. If it doesn't offer any peyronie's specific benefits, it's still of course sensible to have a healthy diet.
I do eat a variety of vegetables (green beans, peas, carrots, etc.) usually frozen though. should probably eat more fresh veggies. I very seldom eat red meat, usually poultry and fish. I've cut back on proteins in general because I have gout which is caused by a buildup of uric acid which occurs when proteins are broken down. Haven't had a gout attack in about a year and a half since cutting back on meats (and nutritional yeast which is bad for gout). I keep hearing about shredded wheat being a problem. I thought whole grains were good. Is the problem the high carb content in the wheat?
Quote from: Fred22 on August 28, 2009, 03:48:24 PMIs the problem the high carb content in the wheat?
Mostly it's the gluten content of certain grains, especially wheat. For some informative discussion, you might read
this post (http://wholehealthsource.blogspot.com/2008/12/gluten-sensitivity-celiac-disease-is.html) and
this post (http://wholehealthsource.blogspot.com/2008/11/book-review-dangerous-grains.html) from the Whole Health Source blog.
Dr. Davis of the track your plaque has found that his cardiac patients who give up wheat have far less of the small LDL particles that are problematic. He has
35 posts on wheat (http://heartscanblog.blogspot.com/search/label/Wheat) that you can peruse.
s&s
Quote from: slowandsteady on August 28, 2009, 01:11:36 PM
In general I think that anything inflammatory will make it worse. For many people that would include gluten.
s&s
s&s,
I have to take exception here on the gluten discussion. My wife is Celiac and we are very familiar with gluten and it's effects. It is not an inflammatory. Gluten is a protein in wheat, barley, oats, and rye. I will agree that many people may suffer from this as proper diagnosis has only been improved in that last 4-8 years. So I agree that it does cause health issues and does so by affecting the cilia in the small intestine. But it is not via an inflammatory response mechanism.
Gluten is a strange animal. I agree that it can be a problem, but I also suspect it can be a rabbit trail. There is new research indicating that gluten can trigger diabetes. But the question is why? I think the problem that we run into with gluten is the same as that which we run into with metoprolol and a number of other drugs that seem to set off Peyronie's. It is all to easy to identify one of many triggers as "the" cause. I think we would be better served by moving further upstream and dealing with whatever is causing gluten to have this effect on the body. Whole wheat products carry with them tremendous health benefits of their own, and to write them all off simply due to gluten would be an overreaction. IF one is currently reacting badly to gluten then by all means avoid it, but if not, deal with the upstream issues like potential vitamin D deficiency. - George
How does one know if one is having a "problem with gluten"?
Quote from: Fred22 on August 28, 2009, 09:03:46 PM
How does one know if one is having a "problem with gluten"?
I would say by stopping it for a period and then restarting it. I have a family member who was struggling with diverticular problems which involves inflamed intestinal "pockets". She was unable to eat anything with seeds as a result. One of the things we tried was a gluten free (SCD) diet. It worked, but it was a very difficult diet to keep. You would be amazed at the number of foods that have gluten or similar substances in them. Then she began increasing her vitamin D levels. Now she is eating seeds without problems and without having to be on a gluten free diet. So what I am trying to say is that often dietary methods sort of work, but sometimes we can find better ways to address the issues upstream and can avoid the more draconian solutions. But the way to find out if your shredded wheat is causing a problem is to quit it for a month and see if it has positive effects. If it does, you might be ahead by making a change. If not, what can I say? The more important issue to me is to make sure you are getting your gluten in whole food products, not processed foods. So as long as your shredded wheat is made from whole wheat flour and does not have sugars and corn syrup added, I wouldn't worry about the gluten issue UNLESS it is obviously affecting you in a bad way. - George
Quote from: Fred22 on August 28, 2009, 09:03:46 PM
How does one know if one is having a "problem with gluten"?
My wife found a specialist. For years she was having gastrointestinal issues. Would always need a tums after she ate, etc. She had an endoscopy and the doctor took a biopsy of the lining of her small intestine. He said this is the only test to know for sure. There is a blood test for Celiac disease but it very inaccurate. The biopsy is the only sure way to tell. Symptoms can range from being simply "gluten intolerant" to a total "gluten allergy".
It is also possible to have an allergy to wheat and wheat products. But this is NOT necessarily a gluten allergy. It is important not to confuse the two.
Quote from: George999 on August 28, 2009, 10:08:47 PM
But the way to find out if your shredded wheat is causing a problem is to quit it for a month and see if it has positive effects. If it does, you might be ahead by making a change. If not, what can I say? The more important issue to me is to make sure you are getting your gluten in whole food products, not processed foods. So as long as your shredded wheat is made from whole wheat flour and does not have sugars and corn syrup added, I wouldn't worry about the gluten issue UNLESS it is obviously affecting you in a bad way. - George
If you only stop the shredded wheat, then you can only tell if the shredded wheat is bothering you. If you suspect it is the gluten, you have to go on a totally gluten free diet which is very difficult. If you find the issue is truly with the gluten, then you have to stay gluten free. You can't go off of it and then back on. The gluten specific related problems will return.
Quote from: lwillisjr on August 28, 2009, 06:21:16 PM
Quote from: slowandsteady on August 28, 2009, 01:11:36 PM
In general I think that anything inflammatory will make it worse. For many people that would include gluten.
s&s
s&s,
I have to take exception here on the gluten discussion. My wife is Celiac and we are very familiar with gluten and it's effects. It is not an inflammatory. Gluten is a protein in wheat, barley, oats, and rye. I will agree that many people may suffer from this as proper diagnosis has only been improved in that last 4-8 years. So I agree that it does cause health issues and does so by affecting the cilia in the small intestine. But it is not via an inflammatory response mechanism.
Anything that is high GI, such as most foods containing wheat, will cause an insulin spike, which is undoubtedly inflammatory. Celiac disease is a whole different ballgame whereby intestinal bacteria is killed off via an allergy to gluten meaning little nutrition is absorbed, and in fact can offer some protection against type 2 diabetes. Bit of a Pyrrhic victory though.
Quote from: George999 on August 28, 2009, 06:50:36 PMWhole wheat products carry with them tremendous health benefits of their own, and to write them all off simply due to gluten would be an overreaction.
What benefits?
The benefits of whole wheat are legion, but here is one benefit that has been in the news lately:
Whole Grains, Bran May Fight Hypertension in Men (http://www.healthday.com/Article.asp?AID=630429)
Sensitivity to gluten does follow the allergic pathway which is different from the autoimmune pathway although both involve immune system dysfunction. lwillisjr is correct in his comment that in order to detect a gluten allergy you have to eliminate ALL gluten containing foods which is indeed difficult. In the case of autoimmune disease, the immune system causes tissue damage by attacking the body's own cells. In the case of allergies the immune system causes inflammation and potential damage to the body's tissues by attacking inert external substances that pose no threat to the health of the body. These both represent variations of immune dysfunction. Once you resolve immune dysfunction itself, you eliminate both autoimmune issues AND allergies. This is why people on LDN are reporting allergies being resolved along with autoimmune problems being resolved. This is also why Vitamin D deficiency is being identified as being a risk factor for both autoimmune disease and allergic syndromes. It used to be dogma that once a person is allergic to something, that allergy NEVER goes away. That view is now changing as ways are being discovered to treat immune dysfunction.
As for GI (Gylcemic Index, NOT Gastro Intestinal) issues, only REFINED grain products are high GI. Whole grain products typically are not. Categorically eliminating whole food groups is not conducive to health UNLESS one has a specific problem related to that particular food group. I really don't know about the shredded wheat. There are some degree of variation in shredded wheat products. Its a matter of reading the label. Its also a matter of the serving size. There are lots of very evil foods out there but they are almost invariably processed foods, the more processed, the more the problems. I am just uncomfortable singling out something like shredded wheat on either a GI basis OR a gluten basis. And I say this as one who has not eaten a shred of shredded wheat for probably close to thirty years so I have no great bias for shredded wheat. I just think that the shredded wheat could be replaced by something far more insidious which can happen if we are not careful about how we evaluate food products. - George
I settled on shredded wheat because it was the only breakfast cereal I could find (at Kroger) that did not contain high fructose corn syrup or loads of sugar or both. The shredded wheat that I eat has 1 ingredient; whole grain wheat. It does, however, contain BHT as a preservative which some research has indicated might be linked to certain types of cancer. BHT is also an antioxident which some people use to treat viral conditions such as Herpes. Any thoughts on BHT? Many people say that oatmeal is the best choice, but according to nutritiondata.com (don't know how reliable this site is, but looks pretty official), both oatmeal and shredded wheat are classified as "moderately inflammatory" and the "glycemic load" of each is about the same. I was just reading about "steel cut" oats which is supposed to be a better choice. I may have to check out the cereals at Whole Foods or other health food stores to see if I can find a better alternative. I think that having a healthy whole grain cereal for breakfast is a good way of fulfilling your daily need for whole grains. We also have brown rice a few times a week for dinner. I do think that a healthy diet is a key component in the battle against Peyronies, but it's very difficult to achieve in this society.
Fred, I think you are doing pretty well. The problem becomes that when you get to intense about eliminating inflammatoriness or glycemicness, you end with not much more than water. Most food have some degree of these seemingly less than desirable qualities. But the reality is that the body actually needs a certain level of these qualities in order to survive. The problem comes when we are starved for vitamin D + we are at the high end on both the inflammatory and glycemic indexes. And that combination is fairly typical of the modern diet and lifestyle. So I think you have done your homework here and you are not going to achieve a whole lot by shifting to steel cut oats, although they are a good choice as well. Whole Foods probably carries Food For Life whole grain cereals and if you check their labels they will look good as well, but are they ahead of shredded wheat? Probably not by a whole lot other than they (or the oats) will allow you to bypass the BHT. Personally I don't like the additives like BHT, but here again, I think we can strain at the gnat and swallow the fly. For years I have worried about all these kinds of things, only to discover that lack of vitamin D was probably causing my body more damage than all these things put together. So should we be concerned about these things? Yup, but not too much. - George
I am still adjusting to the way LDN affects my sleep. It does get in the way of deep sleep. I understand that this effect goes away after 2-3 weeks, but I needed to get a good night of sleep last night because it's been catching up on me. Still, so far so good on the inflammation front.
s&s
s&s - I'm pleased to hear that things are going well on the inflammation front. I may as well give it a whirl really, so I'll send off for some tomorrow. Since LDN appears to impact a specific window of time, do you think it would be suitable for a person with somewhat irregular sleeping hours (due to work)?
Quote from: George999 on August 29, 2009, 10:43:07 AM
The benefits of whole wheat are legion, but here is one benefit that has been in the news lately:
Whole Grains, Bran May Fight Hypertension in Men (http://www.healthday.com/Article.asp?AID=630429)
On that website, the third article down was titled "Wheat Consumption May Contribute to Diabetes".
I personally have now removed wheat, potato and rice from my diet. So far this has increased morning erections. I wish there was a quick way to test inflammation.
Quote from: newguy on August 30, 2009, 11:12:37 PM
do you think it would be suitable for a person with somewhat irregular sleeping hours (due to work)?
My best guess is that 11pm is the best time (I don't know that the natural endorphin schedule is thrown off by sleep time). On the other hand many have taken it successfully in the morning, judging from the yahoo group posts.
s&s
Quote from: skunkworks on August 31, 2009, 05:22:48 AM
I personally have now removed wheat, potato and rice from my diet. So far this has increased morning erections.
Do I understand that you are attributing morning erections to the elimination of wheat, rice, and potatoes ?
Quote from: skunkworks on August 31, 2009, 05:22:48 AM
Quote from: George999 on August 29, 2009, 10:43:07 AM
The benefits of whole wheat are legion, but here is one benefit that has been in the news lately:
Whole Grains, Bran May Fight Hypertension in Men (http://www.healthday.com/Article.asp?AID=630429)
On that website, the third article down was titled "Wheat Consumption May Contribute to Diabetes".
I personally have now removed wheat, potato and rice from my diet. So far this has increased morning erections. I wish there was a quick way to test inflammation.
I would suggest that before anyone remove wheat from there diet, they READ both of the above referenced articles. The second one has NOTHING to do with an inflammatory response, rather it has to do with a rare ALLERGIC response to wheat in some young people that may TRIGGER TYPE 1 diabetes. It think it can be dangerous to make dietary shifts based on the impressions of headlines alone. Here is the link: Wheat Consumption May Contribute to Diabetes (http://www.healthday.com/Article.asp?AID=630279) READ the article before simply assuming that it means the wheat is somehow inflammatory. Ditto for any other food. REFINED carbohydrates ARE inflammatory. Whole food carbohydrates are NOT. - George
What is interesting is that wheat proteins triggered this response. I wonder if a load of exposure makes it worse - IOW if lots of wheat adds to the risk, or if refinement adds to it. A refined carbo load in the diet is associated with an increased risk of diabetes - but this study only looked at people who already had diabetes.
Tim
Quote from: Tim468 on August 31, 2009, 09:38:51 PM
What is interesting is that wheat proteins triggered this response. I wonder if a load of exposure makes it worse - IOW if lots of wheat adds to the risk, or if refinement adds to it. A refined carbo load in the diet is associated with an increased risk of diabetes - but this study only looked at people who already had diabetes.
Tim
Its the consequence of an allergic reaction. Allergic reactions only happen when there are underlying immune issues. It is not normal for the immune system to attack non-pathogenic proteins. - George
Quote from: Hawk on August 31, 2009, 10:21:34 AM
Quote from: skunkworks on August 31, 2009, 05:22:48 AM
I personally have now removed wheat, potato and rice from my diet. So far this has increased morning erections.
Do I understand that you are attributing morning erections to the elimination of wheat, rice, and potatoes ?
As someone who has a definite problem with glucose and insulin, yes. The removal of those foods has caused a positive change in my erections.
If you are only eating low GI wheat products, then that would definitely be an improvement on what is normally consumed.
I saw a post on imminst.org leading to this page:
http://addiandcassi.com/year/the-real-curcumin-for-treating-alzheimer%E2%80%99s-parkinson%E2%80%99s-and-other-brain-disease
It discusses what is called a "super optimized curcumin" used at UCLA and a parents quest to get access to it. I am suspicious of these things, but if we can find the actual study elsewhere confirming its bioavailability then it could be something that's useful to us.
Further information here: http://downsyndromejourney.forumotion.com/down-syndrome-awareness-f12/longvida-curcumin-information-t1300.htm
Found this too:
QuoteDear Margaret:
Recently, a solid lipid nanoparticle formulation of curcumin has become available.
The formulation was developed in the labs of two professors at UCLA:
Professor Sally A. Frautschy http://alzheimer.neurology.ucla.edu/Frautschy.html
Professor Greg M. Cole http://alzheimer.neurology.ucla.edu/Cole.html
This formulation is described in detail in a patent application, PCT/US07/05829 (WO/2007/103435) http://tinyurl.com/3eaegw
Bioavailable Curcuminoid Formulations for Treating Alzheimer's Disease and Other Age-Related Disorders.
The Regents of the University of California http://tinyurl.com/2bztov have licensed it to:
Verdure Sciences, Inc.
1250 East Conner Street
Noblesville, IN 46060
info@vs-corp.com
This formulation has eleven times greater bioavailabiity in the plasma when tested in rodents (see note 1).
Verdure has trademarked this formulation as Curcuminol M3Cx and Longvida. It is available in 500 mg capsules, and these may be obtained by contacting Blake Ebersole @ 317-219-0355 at Verdure. E-mail bebersole@vs-corp.com You can ask him to fax the forms a customer needs to fill-out to obtain the capsules. It is sold in packages of 100 capsules for $59.99. A 400 capsule package is available, too.
Although curcumin has been given in clinical trials in doses as high as 12 grams a day with only minimal toxicity (note 2), I would reason that 4 grams (8 x 500 mg capsules) might be the optimal dose.
Pharmanza Herbals Pvt. Limited, which is Verdure's production facility in India, http://www.verduresciences.de/index.php?nav=2&lang=en, is acting as the sponsor for a trial of this curcumin formulation for advanced osteosarcoma at:
Tata Memorial Hospital
Advanced Centre for Treatment, Research and Education in Cancer (ACTREC)
Pilot Study of Curcumin Formulation and Ashwagandha Extract in Advanced Osteosarcoma (OSCAT)
http://clinicaltrials.gov/ct2/show/NCT00689195
Manish Agarwal, M.D. 011-91-22-2417-7184 mgagarwal@gmail.com
Vikram S. Gota, M.D. 011-91-22-2417-7000 ext 4537 vikramgota@gmail.com
I spoke with Dr. Gota in July who told me that this formulation seemed effective in the early results from the trial. They are using a 4 gram/day dose.
Regards,
David Corbin
REFERENCES
1) Curcumin structure-function, bioavailability, and efficacy in models of neuroinflammation and Alzheimer's disease.
Begum AN, Jones MR, Lim GP, Morihara T, Kim P, Heath DD, Rock CL, Pruitt MA, Yang F, Hudspeth B, Hu S, Faull KF, Teter B, Cole GM, Frautschy SA.
J Pharmacol Exp Ther. 2008 Jul,326(1):196-208.
http://pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=18417733
The inference I suppose is that the curcumin used in the study (1) is the curcumin formulation in question. It might be worth having a read through it to see if it actually is much more effective than the methods we're using right now and whether its something worth exploring further.
Vitamin D2 is the prescription form sold with a large mark up by the pharmaceutical companies. Doctors have been taught for eons that it is the "better" form of vitamin D. The reality is just the opposite. Vitamin D researchers have demonstrated repeatedly that only D3 is optimally effective in humans. Now, finally, docs are catching on. Their response has been to finally specify "D3" in their prescriptions. So what do the pharmaceutical companies do? Well they label their D2 as being D3! And they explain that they are using the term D3 as a "brand name" to describe their D2. So don't assume that the "D3" you are getting from the pharmacy is actually D3. - George
The Story of the Fake D3 (http://heartscanblog.blogspot.com/2009/09/d2-and-d3-are-two-different-things.html)
George,
I clicked on your "Fake D2" link and read with interest. as I was perusing the page I noticed a list at the left of the screen and saw "wheat" under "blog archives". What I found were horror stories regarding the consumption of any wheat products. Shredded wheat was actually singled out as very bad for human consumption relating to high glycemic index, weight gain, wheat addiction, etc., etc. Have you read this part of the blog? It has made me think that I should not only give up my shredded wheat for breakfast, but all bread and grain products, including rice, barley, etc. Check it out if you get a chance and let me know what you think.
Fred
Fred, I think a part of the problem is that most wheat cereal products, while they claim to be whole something or other, are not actually true whole grain products. There are a lot of refined foods that have the same problem as the vitamin D2/D3. They are claiming to be something they are not. So if you have any doubt, make a switch. Personally, I don't consume a lot of cereal and the cereal I do consume is the Food for life products which are multi-grain, unadulterated and minimally processed. - George
PS - Wheat Bellies ... Good find!
George,
I had my Vitamin D level checked after taking 2000 IU per day for 60 days, the results were as follows;
Vitamin D, 25 OH total 47
Vitamin D, 25 OH D< 4
Vitamin D, 25 OH, D3
Not sure what this indicates! Do you think I should increase my intake level or leave it as is? I know you have talked about ranges around 70.
Thanks,
Jayhawk
Quote from: jayhawk on September 04, 2009, 03:05:57 PM
George,
I had my Vitamin D level checked after taking 2000 IU per day for 60 days, the results were as follows;
Vitamin D, 25 OH total 47
Which lab did you use? Hopefully
not Quest (http://www.nytimes.com/2009/01/08/business/08labtest.html). If you did use Quest, divide your result by 1.3 for your actual result, and (I'd recommend) double your dosage and get retested in another couple of months. If you used a different lab, you're in pretty good shape, though I'd consider a slight increase to 2500 IU daily just to get over 50 ng/dl. I'm in the low 60's myself taking 7500 IU/day.
s&s
Quote from: George999 on September 04, 2009, 01:19:57 PM
PS - Wheat Bellies ... Good find!
Yeah, man I sure don't want one of those!!
Quote from: slowandsteady on September 04, 2009, 04:33:02 PM
Quote from: jayhawk on September 04, 2009, 03:05:57 PM
George,
I had my Vitamin D level checked after taking 2000 IU per day for 60 days, the results were as follows;
Vitamin D, 25 OH total 47
Which lab did you use? Hopefully not Quest (http://www.nytimes.com/2009/01/08/business/08labtest.html). If you did use Quest, divide your result by 1.3 for your actual result, and (I'd recommend) double your dosage and get retested in another couple of months. If you used a different lab, you're in pretty good shape, though I'd consider a slight increase to 2500 IU daily just to get over 50 ng/ml. I'm in the low 60's myself taking 7500 IU/day.
s&s
jay, I pretty much agree with s&s's assessment. 50 to 70ng/ml is considered optimal according to the vitamin D docs, but I am trying to get my levels up as close as possible to the upper limit. I seem to recall reading somewhere that the NIH admits that they really haven't seen any cases of toxicity below 400ng/ml although I certainly would not advocate going over the 110ng level for something like Peyronies. - George
Well guys, I just got a tentative diagnoses of multiple sclerosis today which puts me in an interesting position. That 1) makes it more likely that I will be able to get an above board prescription for LDN and 2) will enable me to observe its long term effects on Peyronie's AND to have Dr Lue following me during that time (hopefully!). I am really hopeful that LDN will prove effective for Peyronie's. - George
Quote from: George999 on September 04, 2009, 07:54:30 PM
Well guys, I just got a tentative diagnoses of multiple sclerosis today which puts me in an interesting position. That 1) makes it more likely that I will be able to get an above board prescription for Low Dose Naltrexone and 2) will enable me to observe its long term effects on Peyronie's AND to have Dr Lue following me during that time (hopefully!). I am really hopeful that Low Dose Naltrexone will prove effective for Peyronie's. - George
You might find this interesting George:
http://darwinstable.wordpress.com/2008/11/21/the-paleo-diet-and-multiple-sclerosis/
All the best with putting together a good treatment plan for the MS, there are some effective treatments available these days.
Gosh, George, I'm very sorry to hear that. I certainly know you will attack it with everything at your disposal, and we'll all be pulling for you.
Nemo
It's great that you'll be able to give LDN a try George. The ball is finally rolling. Do you currently have any peyronie's symptoms to gage its effectiveness against?
Quote from: skunkworks on September 04, 2009, 11:58:41 PM
Quote from: George999 on September 04, 2009, 07:54:30 PM
Well guys, I just got a tentative diagnoses of multiple sclerosis today which puts me in an interesting position. That 1) makes it more likely that I will be able to get an above board prescription for Low Dose Naltrexone and 2) will enable me to observe its long term effects on Peyronie's AND to have Dr Lue following me during that time (hopefully!). I am really hopeful that Low Dose Naltrexone will prove effective for Peyronie's. - George
You might find this interesting George:
http://darwinstable.wordpress.com/2008/11/21/the-paleo-diet-and-multiple-sclerosis/
All the best with putting together a good treatment plan for the MS, there are some effective treatments available these days.
WOW! Thanks you so much for that link! This has to be applicable on at least some levels for Peyronie's sufferers as well. There are certainly a number of people with MS who have employed this approach with great success. This series really outlines that process that triggers autoimmunity in the first place and does it very well and so it is indeed a must see. The real fly in the ointment in trying to apply these dietary restrictions is in the difficulty of maintaining them over a long term. Another factor is that some people can't really apply them at all because they already have medical restrictions on many of the allowed foods which leaves them at a loss for choices. But I would certainly advocate following these guidelines as much as individually possible. I, personally, am probably following them with 80% or more of my diet and in places where I am in violation, grains for example, I try to get the most whole grain products that I can. I can also tell you that I avoid cheese because it exacerbates my problems in a very obvious way as does milk itself which I avoid completely. But certainly the link you provide has greatly enhanced my understanding of the underlying process (I watch the whole presentation). I recommend that everyone here take a look see. - George
Quote from: Nemo on September 05, 2009, 03:20:03 AM
Gosh, George, I'm very sorry to hear that. I certainly know you will attack it with everything at your disposal, and we'll all be pulling for you.
Nemo
Thanks Nemo for those kind words of support! - George
Quote from: newguy on September 05, 2009, 10:06:50 AM
It's great that you'll be able to give Low Dose Naltrexone a try George. The ball is finally rolling. Do you currently have any peyronie's symptoms to gage its effectiveness against?
At this point the Pentox has shut down the Peyronie's 100%. It is just locked in place. No inflammation or progression, but no significant return toward normalcy either. My hope is that the Low Dose Naltrexone will be able to accomplish something that the Pentox has not been able to accomplish by suppressing the chronic silent inflammation in addition to the painful acute inflammation that is handily suppressed by Pentox. But we will see how that works out. My plan is to try stopping the Penox once I am established on the Low Dose Naltrexone and see what happens. I know that s&s and some others here are already well along with the Low Dose Naltrexone (so the ball has really already been rolling around here for a while now) and I will be hoping for good news from them as well. I am thinking that perhaps someone here who is already on Low Dose Naltrexone ought to start an Low Dose Naltrexone thread now that we have that option. - George
Often the topic of prescription drugs has come up concerning Peyronie's disease and guess what, is no different with MS. For a long time now I have been taking Cozaar (losartan) as a BP med because it has a great reputation for being antifibrotic and in fact has been shown in research to protect people from kidney disease. Well, NOW they are finding out that lisinopril seems to shut down MS. The reason it does that is that it blocks Angiotensin Converting Enzyme (it is known as an ACE inhibitor). Angiotensin Converting Enzyme, they have discovered, is a potent inflammatory factor in the brain. Cozaar is an ARB or Angiotensin Receptor Blocker. It blocks the BP raising process at its end point and thus actual causes levels of Angiotensin Converting Enzyme to RISE as the body tries to overcome the Cozaar blockade. Thus Cozaar, which I was taking with the expectation that it would be helpful with the Peyronies, in all likelihood contributed to ending up with MS and is now likely aggravating and fueling the MS. So now I am in the process of switching back to Lisinopril and hoping that I can tolerate it since I was having other problems with it, as well, when I switched to Cozaar. What tangled webs we weave! EVERYTHING in life interacts. You change your drug regimen, supplements, or diet in order to try to fix one thing and that, in turn, screws up something else. :'( Thats one reason doctors are so cautious about everything and so minimalistic in their treatment approaches. - George
Inexpensive hypertension drug could be multiple sclerosis treatment, study shows (http://med.stanford.edu/ism/2009/august/lisinopril.html)
Quote from: George999 on September 05, 2009, 11:44:14 AM
I know that s&s and some others here are already well along with the Low Dose Naltrexone (so the ball has really already been rolling around here for a while now) and I will be hoping for good news from them as well.
Sorry to hear about the diagnosis George; I hope it works out for you.
I found a different source for naltrexone
here (http://www.alldaychemist.com/single_product_detail.php?productid=1704&isProductID=156/1) that is much more cost effective than anti-aging systems, though you'd have to mix it in water and put it in a bottle with a dropper.
I'm still going through the early phase with LDN. At 2.25 mg, I can sleep through the night much better than when I started. I had been getting tired, and took a couple of days off. LDN at my current dose doesn't handle all of the inflammation, so I still use some curcumin. I also take 600mg NAC, 4000 FU nattokinase, 100mg pycnogenol, and 2g l-arginine in the morning on an empty stomach.
s&s
Geoge,
been busy with admin work on the forum and am sorry to just read about your tentative diagnosis. Hopefully is will turn out to be corrected to a more benign condition, but in any event it has a strong adversary ;).
I wish you the best.
On the subject of Whole wheat: The FDA allows the uses of the term whole wheat or whole grain on products that include a mix of whole wheat or whole grain ALONG WITH REFINED FLOUR. It simply means there is SOME whole wheat in the product.
A product must say 100% Whole Wheat in order to indicate the absence of refined flower.
s&s - That really is good value. The alldaychemist site one or two frequently mentioned on the LDN yahoo group. The other being riverpharmacy, which is more expensive: https://www.riverpharmacy.com/drugInformation.php?ActiveIngredient=638 . I ordered LDN from riverpaharamcy about 3 days ago, so we will probably have a few viable options. There is talk that sometimes people require a prescription with alldaychemist and sometimes they don't, but I assume they state the situation before you confirm your order.
George - My point was more that since pain may be low level, and beyond your ability to feel it, how will you know if LDN is working or not? I am interested to know.
All,
Anyone have a trusted and reliable source for Sans Vasoflow? I noticed that bodybuilding.com stopped selling it.
I've been using L-Arginine from puritan.com, but the company does not carry the Sans Vasoflow product.
Thanks.
CF
Quote from: cowboyfood on September 05, 2009, 04:27:29 PM
Anyone have a trusted and reliable source for Sans Vasoflow? I noticed that bodybuilding.com stopped selling it.
Bodybuilding.com is on our supplier list primarily BECAUSE they sell San Vasoflow. If they no longer sell it they will be removed and replaced by some existing source.
Quote from: newguy on September 05, 2009, 02:16:48 PM
George - My point was more that since pain may be low level, and beyond your ability to feel it, how will you know if Low Dose Naltrexone is working or not? I am interested to know.
For low level inflammation, the way you would know is if the deformity began to gradually correct itself in a way that was obvious. In other words, straightening itself doesn't necessarily indicate a good thing because the opposite side may be shortening BUT if there is measurable lengthening, THEN you would know that something good is happening. Another way would be a positive ultrasound comparison v a previous ultrasound. You are right, it is a bit difficult, but progress on this front would be unreal. - George
Quote from: George999 on September 04, 2009, 07:54:30 PM
Well guys, I just got a tentative diagnoses of multiple sclerosis today George
George,
I'm sorry to hear about the diagnosis and as Nemo said, we'll all be pulling for you . You're a real souce of inspiration and encouragement here on this forum and I've greatly benefited from your contributions and advice both here and in our private conversations. Hopefully, the initial "tentative" diagnosis will turn out to be something less serious.
Fred
George - I think it could be argued that a sudden cessation of low dose inflammation could make the deformity better or worse. Better due to the body having the best opportunity to be able to heal itself, or worse since on occasion if somebody has active peyronie's the healing probably only begins once the inflammatory processes has died down totally. I suppose the occurence of changes, good or bad, coinciding with LDN intake could be taken to mean that it is reducing inflammation. I'm intrigued by LDN and hope that it does something for me. I'm quietly confident that it can help with the ms, especially since you're getting on it so soon after the diagnosis.
Quote from: cowboyfood on September 05, 2009, 04:27:29 PM
All,
Anyone have a trusted and reliable source for Sans Vasoflow? I noticed that bodybuilding.com stopped selling it.
I've been using L-Arginine from puritan.com, but the company does not carry the Sans Vasoflow product.
Thanks.
CF
I hate to recommend VitaCost as I am not a great fan of their major line of supplements, but I've never had a problem with them fulfilling their orders and they DO carry SAN VasoFlow. Too bad bodybuilding.com seems to have dropped it as of a couple of days ago. - George
http://www.vitacost.com/San-VasFlow?csrc=GPF-672898618003 (http://www.vitacost.com/San-VasFlow?csrc=GPF-672898618003)
UPDATE: The reason that bodybuilding.com has discontinued it is because for some reason SAN is no longer making it. There currently seems to be no reason given for why they are no longer producing it. There seems to be quite a bit of it out there at them moment, but it won't last now that bodybuilding.com the major retailer has stopped carrying it. Too bad, a lot of people found it very useful. - George
Quote from: newguy on September 05, 2009, 06:00:09 PM
George - I think it could be argued that a sudden cessation of low dose inflammation could make the deformity better or worse. Better due to the body having the best opportunity to be able to heal itself, or worse since on occasion if somebody has active peyronie's the healing probably only begins once the inflammatory processes has died down totally. I suppose the occurence of changes, good or bad, coinciding with Low Dose Naltrexone intake could be taken to mean that it is reducing inflammation. I'm intrigued by Low Dose Naltrexone and hope that it does something for me. I'm quietly confident that it can help with the ms, especially since you're getting on it so soon after the diagnosis.
I agree, ALL the inflammation has to be gone for any real healing to take place. - George
George, I'm sorry to hear about SAN VasoFlow being taken off the market, though I won't miss that nasty smell and taste of the oil those caps soak in in the jar. Do you have a second choice as far as L-Arginine?
Nemo
I came across this study, "Pyridoxal 5'-phosphate as a novel weapon against
autoimmunity and transplant rejection" ([[http://pubmed.gov/14656979|PMID 14656979]]). It's from Iran in 2003. From the abstract:
QuoteActivation of CD4 T cells by antigenpresenting
cells is required for the full expression of
most autoimmune diseases and allogeneic transplant
rejection.
From the conclusion:
Quote
Considering that the D1 domain of CD4 plays a pivotal
role in the CD4–MHC II interaction and that PLP
binds tightly to this domain, and could therefore
prevent D1–beta2 interaction, it could be deducted that
PLP may be a useful addition to anti-autoimmunity and
anti-transplant rejection armamentarium. PLP is very
economical and could be administered to humans
intravenously in relatively high doses.
The full text of the article is available for download (http://www.fasebj.org/cgi/reprint/17/15/2184.pdf).
In another article (http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1006534):
QuoteAbnormalities of tryptophan metabolism have been reported in patients with rheumatoid arthritis (RA) and it has been suggested that these abnormalities are the result of disordered vitamin B6 metabolism. Fasting serum pyridoxal, assayed by an automated microbiological system, was found to be below normal in 35 out of 42 patients with RA while a similar abnormality was found in 8 out of 35 patients with osteoarthrosis (OA).
Another source: Abnormal vitamin B6 status is associated with severity of symptoms in patients with rheumatoid arthritis
The American Journal of Medicine, Volume 114, Issue 4, Pages 283-287
P5P is one of three forms of B6. Pyridoxine (http://en.wikipedia.org/wiki/Pyridoxine) has been linked to peripheral neuropathy (noticeable by tingling extremities) in doses of 200 mg and above. P5P is supposedly far less likely to lead to this.
It would be interesting to see if a few hundred milligrams of P5P helps with Peyronies Disease symptoms. Stop if you get tingling in fingers or toes, but I don't think that would happen with the P5P form.
s&s
Edit: I see this topic has come up (https://www.peyroniesforum.net/index.php/topic,22.msg257.html#msg257) before.
Thinking about what I wrote about P5P yesterday, I decided to try some. The only thing stopping me was that I had none on hand. ;)
I did have some pyridoxamine (PM) though, another form of B6 that is well know for glycation reduction. After taking 300 mg last night, I had a very easy morning with only some inflammation in the afternoon. I took another 300 mg dose before supper and again am feeling quite good. I haven't taken pyridoxamine at this dose before. It has a half life of about 1.5 hours
R (http://www.aapsj.org/abstracts/AM_2003/AAPS2003-001280.PDF), so I might benefit from splitting it up a bit more across the day.
There are some qualities of PM that might be interesting in Peyronies Disease. In a rat model fo chronic allograft nephropathy (which causes kidney failure in transplants):
QuotePM significantly decreased proteinuria (76 ± 18 vs 29 ± 3 mg/day), serum creatinine (130 ± 12 vs 98 ± 5 µmol/l), focal glomerulosclerosis (116 ± 27 vs 16 ± 5 AU), glomerular macrophage influx (5.6 ± 0.6 vs 3.3 ± 1.0), interstitial fibrosis (132 ± 24 vs 76 ± 2 AU) and interstitial macrophage influx (47.0 ± 8.7 vs 15.4 ± 5.0.
Decreased fibrosis, macrophage infiltration, and AGE formation -- sounds good to me.
I'll keep on with this and see how it works out.
s&s
slow and steady - so couldnt this supp be the answer - has any one else heard of it and if so have they tried it and with what results -
s&s - I take 10mg a day of pyiodoxaime as it is present in my multi-b Benfotiamine pill. I wonder if the higher doseage will work for you. One of the most tricky components of taking several supplements is getting the dosage right. Maybe there is a case for megadosing certain supplements, bu it's always hard to know because we're flying blind to a certain extent.
CAN SOMEONE HELP - all the supp ive been taking has led to me getting burning mouth syndrome - can these supps do this ? - has this happened to anyone - bit panicky here!!!
Lots of info on pyridoxamine on this site (http://morelife.org/supplements/PM.html). In rats it's very non-toxic (it took 5000-7500 mg/kg oral to kill half of them, very roughly 58g for a 150 pound person, about 190 times less than I'm taking).
Iceman, I've just taken it for a couple of days. You might want to wait a bit.
What are you taking that causes your mouth to burn? That doesn't sound good.
Pyridoxal 5'-phosphate (PLP) is potentially better than pyridoxamine (PM) according to this study in a rat model of diabletes (PMID 17449494 (http://"http://pubmed.gov/17449494")):
QuotePLP significantly inhibited expression of TGF-beta1, type 1 collagen, fibronectin and RAGE in the kidneys. PLP was superior to PM in inhibiting accumulation of AGEs, expression of TGF-beta1, type 1 collagen, and fibronectin, and the development of diabetic nephropathy.
This study has been brought up before (Hitman and George999), but I don't know how much follow-up it has received. George999, do you remember how much P5P were you taking?
s&s
im taking - pentox, Larginine, ALC plus tribulus - i tried cucurum for about a week and that might be the cause - im not sure..
Quote from: slowandsteady on September 10, 2009, 03:46:49 PM
Pyridoxal 5'-phosphate (PLP) is potentially better than pyridoxamine (PM) according to this study in a rat model of diabletes (PMID 17449494 (http://"http://pubmed.gov/17449494")):
QuotePLP significantly inhibited expression of TGF-beta1, type 1 collagen, fibronectin and RAGE in the kidneys. PLP was superior to PM in inhibiting accumulation of AGEs, expression of TGF-beta1, type 1 collagen, and fibronectin, and the development of diabetic nephropathy.
This study has been brought up before (Hitman and George999), but I don't know how much follow-up it has received. George999, do you remember how much P5P were you taking?
s&s
As I remember, I was taking 5mg per day for some time. This was the product -> http://www.jarrow.com/product.php?prodid=255 (http://www.jarrow.com/product.php?prodid=255) I didn't notice any profound effect. I see that NOW Foods has a product with significantly more P5P in it -> http://www.iherb.com/Now-Foods-P-5-P-Coenzyme-B6-50-mg-60-Tablets/740?at=0 (http://www.iherb.com/Now-Foods-P-5-P-Coenzyme-B6-50-mg-60-Tablets/740?at=0) - George
George , do you have many thoughts on the use of ACE Inhibitors as part of a wider oral treatment regime aimed at combating peyronie's? I've seen them come up in a few peyronie's studies where potential treatments are stated, and as being useful to combat fibrosis. Is the potential downside of such medications generally seen to be too great to encourage use in this condition? I know you yourself had a negative experience, but I'm still interested in hearing your view on this subject.
Quote from: newguy on September 11, 2009, 02:36:08 AM
George , do you have many thoughts on the use of ACE Inhibitors as part of a wider oral treatment regime aimed at combating peyronie's?
At this point I really don't have a clue on this one. I left ACE Inhibitors for an ARB due to low level chest pain and chronic congestion. Now that you bring it up, I don't know whether that was before I contracted Peyronie's or after????? That is actually a very good question, the answer may lie in the paper trail somewhere, I'll look into it further when I have the time. Now I have to deal with MS and late breaking research is showing ACE Inhibitors to be potentially powerful tools for combating MS. It turns out that while some ARBs have anti-fibrotic qualities, they do nothing to reduce ACE and in fact may even raise it. Now ACE is implicated in fueling MS fairly powerfully. So I am already on a path toward moving back to Lisinopril as quickly as possible since I will gladly trade my MS for a little old chest pain and congestion, although hopefully that won't reoccur. And how might that relate to Peyronie's? I really don't know at this point. We have all of these hormones and drugs circulating in our bodies. So many variations, in fact, that it would not be possible to study all of the combinations. All or any of these have the potential to affect our immune systems and/or epigenetics in any number of unexpected ways. Both are delicately balanced and unique to us as individuals. I think there is probably at least one guy here now, and probably more, that is/are taking Lisinopril. I don't know whether their Peyronie's is aggressive or easily controlled. That is how little we know about these things. But after what has been discovered with Lisinopril and MS, Lisinopril would probably be interesting to me even if I were not facing the MS issue. I would have to wonder whether ACE might not also be making my Peyronie's more virulent. I guess perhaps now I am about to find out. In life you either never stop exploring or you end up trying to hide in a hole. - George
Quote from: George999 on September 10, 2009, 10:09:30 PM
As I remember, I was taking 5mg per day for some time. This was the product -> http://www.jarrow.com/product.php?prodid=255 (http://www.jarrow.com/product.php?prodid=255)
Yeah, that product has 5mg of P5P as an afterthought. It's the 50 mg of pyridoxamine that's the main ingredient.
I'm going to trial P5P at higher doses (400 mg/day).
After reading about the success of the ALK5 inhibitor IN-1130 which antagonizes TGF-beta signaling in the study PMID 19473283 (http://pubmed.gov/19473283), I did some searching on ALK-5 inhibitors. I saw this patent (http://www.freshpatents.com/-dt20090820ptan20090209539.php), "Pyrimidine derivatives as alk-5 inhibitors".
Looking up pyrimidines, I found that orotic acid (http://en.wikipedia.org/wiki/Orotic_acid) is a member of that family of compounds. Orotic acid can be taken as a supplement as magnesium or calcium orotate (and others).
Magnesium orotate has been shown to be beneficial in heart disease (PMID 19367681). I'm wondering if it might also benefit Peyronies Disease. Still digging.
s&s
Quote from: slowandsteady on September 13, 2009, 01:39:10 AM
After reading about the success of the ALK5 inhibitor IN-1130 which antagonizes TGF-beta signaling in the study PMID 19473283 (http://pubmed.gov/19473283), I did some searching on ALK-5 inhibitors. I saw this patent (http://www.freshpatents.com/-dt20090820ptan20090209539.php), "Pyrimidine derivatives as alk-5 inhibitors".
I think it should be helpful. In the past I have used both magnesium orotate and potassium orotate. I did not notice any significant benefit in terms of Peyornie's, but probably was not getting nearly enough of it to make much difference. So the problem is how to get enough of it without potassium or magnesium overload. Calcium orotate might be a solution. But then the next issue is that in large amounts it becomes pretty pricey. - George
I've been on pentox for 6 months now - still no improvement. I've also been taking cialis every other day, and using the VED 4-5 days a week for about 2 months. I'm scheduled to undergo a penile vascular study soon - a color doppler and possibly a DICC test. Has anyone undergone one of these tests, and if so, is there anything I should know or be aware of? And when do most improvements from pentox/VED start to take place? I'm starting to get a little discouraged at this point. :-\
Joe
Two months of VED therapy are not enough to start getting results. In my case it took 3-4 months and the best was at about 1 year.
I would recommend a Color Doppler. What does DICC stand for?
Do not get discouraged just remember never - ever / never - ever ever give up. If you are going to a general practice urologist I would suggest you find a Male Sexual Function Doctor, they are much better at treating our condition but extremely hard to find.
Jackp
Pentox takes years to work, not months. I have been on it close to two years and am just now really beginning to see some benefit. But no other oral treatment comes close at this point. There simply is no silver bullet, but if one does nothing, it will likely continue to get worse. The ONLY instant fix is surgery and that carries its own downsides. There is no easy solution. - George
George - you say you are starting to see some benefit from pentox after 2 yrs - what benefits are you seeing exactly as Ive been on pentox for 18 months now and would like to compare my observations with yours.
cheers
iceman
On the topic of cialis, levitra and viagra, these could all be taken on a daily basis?
And the purpose is to give us more nocturnal erections, which enhance bloodflow and healing? A secondary gain is the raised nitric oxide levels?
Is anyone taking any of these on a daily basis?
Quote from: skunkworks on September 13, 2009, 09:51:55 PM
On the topic of cialis, levitra and viagra, these could all be taken on a daily basis?
And the purpose is to give us more nocturnal erections, which enhance bloodflow and healing? A secondary gain is the raised nitric oxide levels?
Is anyone taking any of these on a daily basis?
It is often given on a daily basis post surgery. Also..... since it is typicaly to take something like Viagra twice per week, then each tablet could be cut into 3-4 pieces so a smaller dose taken on a daily basis. I personally cut my Cialis tablets in half and take one every other day.
I almost always take Cialis daily at about 4-5 mg a day. Minimal side effects, good erectile function with sex whenever it happens, and good morning erections.
Tim
Ive tried some Vitamin E tablets for the past few months, and they haven't been very successful. Almost no change at all. Do you guys think that masturbation and sexual activity could contribute to peyronies (after you found out you already have it)?
Quote from: Exile999 on September 17, 2009, 02:37:46 PM
Ive tried some Vitamin E tablets for the past few months, and they haven't been very successful. Almost no change at all. Do you guys think that masturbation and sexual activity could contribute to peyronies (after you found out you already have it)?
Tablets or gelcaps? Vitamin E is an oil soluble vitamin, so it's best taken in oil. I like NOW gamma E.
For sexual activity, I personally think it's not good
if you have inflammation.
Exile999 - After reading your history I'm unsure of the nature of your condition and those you've seen about do not appeare to have helped lessen your concerns. Let's see if we can make some progress here.
Do you or have you ever experienced penis pain?
You mention curvature. Has it always been there, or is it recent? How curved is it?
Do you know what caused the 'squishy feeling' that you mention?
Has your condition changed much since you first noticed it?
Vitamin E in my opinion isn't really something that you should rely solely on for improvements, but it probably won't hurt wither. The PAV cocktail is a good start for an oral treatment regime: Pentoxifylline, L-Arginine and Viagra.
If sex and/or masturbation makes pain worse, then you might want to go easy on it for a while.
Quote from: newguy on September 17, 2009, 02:48:45 PM
Exile999 - After reading your history I'm unsure of the nature of your condition and those you've seen about do not appeare to have helped lessen your concerns. Let's see if we can make some progress here.
Do you or have you ever experienced penis pain?
You mention curvature. Has it always been there, or is it recent? How curved is it?
Do you know what caused the 'squishy feeling' that you mention?
Has your condition changed much since you first noticed it?
Vitamin E in my opinion isn't really something that you should rely solely on for improvements, but it probably won't hurt wither. The PAV cocktail is a good start for an oral treatment regime: Pentoxifylline, L-Arginine and Viagra.
If sex and/or masturbation makes pain worse, then you might want to go easy on it for a while.
The situation definitely has changed, I did indeed take vitamin E gelcaps, however I realized this, that the squishy feeling from before was simply a vein and even a doctor has confirmed that. I told him about the curve of my penis, and he said that I should give it some time and take some vitamin E tablets, which are indeed the gels. I already told him I simply waited for a few months already, but he told me to wait longer -_-. He also said these cases dont often occur to people my age.
I have also learned this, the curve is not caused by the vein, but in fact a hardened area on the base of my penis, and I have learned how to feel it (its definitely much tighter). There is no pain whatsoever in any way shape or from. From erections to masturbation there is no pain.
If there is no pain, then I wouldn't worry so much about cutting down on sexual activity. If the curve appeared recently and has not always been there, then maybe you would benefit from the PAV cocktail I mentioned previously. How pronounced is the curve?
truthfully i would say the curve is more psychologically damaging than anything else. When fully erect my guess is that the curve is slightly less than 45 degrees. Its similar to a curve like this " \ ".
In that case, I think you should try to find a doctor who will prescribe Pentoxifylline and Viagra (since you mentioned some erectile dysfunction issues). You should also buy l-arginine. That combo may help to improve matters, or hopefully top the situation getting worse. You might also want to think about starting on VED therapy: https://www.peyroniesforum.net/index.php/board,38.0.html
Hi, Exile999. Welcome... I hope you will quickly see that you will find a lot of very helpful people on this site.
I saw your posts and I have a question for you:
Have you noticed any loss in penis length or girth? In my case, I noticed a curvature first but almost immediately (within weeks/ maybe a month) I began to notice loss in both length and girth. This is what really got my attention and got me to schedule my first Uro appointment. I was diagnosed w/ Peyronies in April, 09 (my first symptoms appeared in Nov, 08). I am on the PAV cocktail mentioned by Newguy (although I am on Potaba...not Pentox). And, I am faithfully using a VED. I am now seeing a reversal in the curvature and a re-gain in both length and girth (I have charted and measured monthly). It took determination and a complete self-evaluation of diet, medicine, supplements, and exercise. I don't think any one item is a cure-all.
Good luck. The psychological issues are terrible at the onset....stay strong.
JackieO
Sadly its been like this for about 9 months now so I have known about the curve relatively for a long time. I cant say that its gotten worse but it definitely hasn't gotten better in these past 9 months. Thanks for the idea of the PEV PAV, I'll definitely see what I can get from it. I do have a question however, are there any side effects?
Exile999: Did you mean to say PAV: Pentoxifylline, L-Arginine and Viagra?
The "P" (Pentox) is generally tolerated. I am on Potaba (Uro's choice) and it is regarded as having more side-effects (upset stomach, vomiting, diarrhea). I have no side-effects on a low dosage. However, on what is considered a preferred dosage (24 tablets daily) I had bleeding. L-Arginine is generally accepted and w/o side-effects (to my knowledge) and Viagra.....you know the side-effect. Actually, I take Cialis.
If you do a search on the website you will find a lot of data on these drugs/ supplements.
JackieO
Quote from: Jackieo on September 17, 2009, 08:44:31 PM
and Viagra.....you know the side-effect. Actually, I take Cialis.
For what it's worth I take Cialis too. My thinking , aside from the bovious benefits, is that it's best to have a PDE5 inhibitor in your system 24/7. As part of a comprehensive approach I am thinking/hoping that it's better able to combat some of the peyronies disease processes.
For those interested and unable to get Pentoxifylline through a urologist, you might want to try river pharmacy. I bought LDN from them as they are recommended on the LDN forums as being reliable. Previously I had managed to get inhousepharmacy to stock it, but it is so much cheaper on this site, that I feel like I was totally ripped off previously:
https://www.riverpharmacy.com/drugInformation.php?ActiveIngredient=332
It's listed as Pentoxiphylline, another name for Trental.
What was the quoted price on pentox and naltrexone from inhouse?
I got this quote from qhi:
QuoteHello
We can special order these products for you
Nalorex® Tablets, yellow, f/c, scored, naltrexone hydrochloride
50 mg 28-tab pack = 53.83 US Dollars/32.62 Pounds/38.17 Euros
Trazodone 50mg capsules 84's 27.19 US Dollars/16.48 Pounds/19.28 Euros
Trazodone 100mg capsules packs of 56's 31.35 US Dollars/19 Pounds/22.23 Euros
Trental® Tablets, m/r, pink, s/c, pentoxifylline
400 mg 90-tab pack (Parallel Import) = 48.88 US Dollars/29.62 Pounds/34.66 Euros
These prices are based on paying in US Dollars or pounds by personal
cheque or cash. if paying by card the cost will be 6% more expensive and
charged in Euros and converted back to your currency by your credit card
company.
These prices DO NOT include shipping
Valid for 30 days
be well
QHI
NB. if this is against the forum rules I will get rid of it.
Quote from: George999 on August 22, 2009, 08:38:52 PM
I really believe that at this point Pentox is still pretty much the gold standard when it comes to anti-inflammatory treatments for Peyronie's. It is an immuno-suppressant that is very effective at knocking down the inflammation associated with Peyronie's.
George,
Are you sure that Pentoxifylline (Trental) is an immune-suppressant? If that is the case I DEFINITELY cannot take it - I am dealing with some chronic infections, and suppressing my immune system could be disastrous for me.
In googling Pentox, I keep coming across references to it as an immune-modulator, so I am confused as to what effect it actually has on the immune system. Anyone have an idea?
Thanks,
HopeToHeal
PS - Just posted my story in the VED section here: https://www.peyroniesforum.net/index.php/topic,25.msg22034.html#msg22034 (https://www.peyroniesforum.net/index.php/topic,25.msg22034.html#msg22034)
Quote from: HopeToHeal on September 18, 2009, 09:35:51 PMAre you sure that Pentoxifylline (Trental) is an immune-suppressant? If that is the case I DEFINITELY cannot take it - I am dealing with some chronic infections, and suppressing my immune system could be disastrous for me.
Below is a quote from an old abstract attesting to the fact that Pentox is an immunosuppressant, although a rather weak one. I recently suspended my Pentox for a few days because my daughter has a virus and Swine Flu is on the upswing in our area and I really would rather pass on it at the moment and am willing to risk some Peyronie's inflammation if necessary. However, I hope to get back on the Pentox again within a few days as things settle out on the flu front. If I had the kind of chronic infections you are dealing with, I would be VERY careful with Pentox. At least one other person on this site has encountered this issue although there are others here who will debate this issue. Two things I WOULD recommend you look into are two honest to goodness immuno-modulators. One, of course, is vitamin D. I recently am hearing reports from doctors in swine flu areas that are keeping their patients' blood levels of vitamin D up to snuff and they are seeing ZERO swine flu infections among their patients. Thats how good it is in terms of knocking out infections. The second is Low Dose Naltrexone. This one really ramps up the immune system and has been known to stop HIV in its tracks. It also is so good in terms of autoimmune diseases that it is widely used by people with MS and has even helped people with Lupus. The key sites again are:
Grass Roots Health (http://www.grassrootshealth.net)/
Vitamin D Council (http://www.vitamindcouncil.org) for Vitamin D and
Low Dose Naltrexone dot org (http://www.lowdosenaltrexone.org) for Low Dose Naltrexone. - George
Quote from: Transplantation - June 1997USE OF THE METHYLXANTHINE DERIVATIVE A802715 IN TRANSPLANTATION IMMUNOLOGY: I. Strong In Vitro Inhibitory Effects on CD28-Costimulated T Cell Activities 1 (http://journals.lww.com/transplantjournal/Abstract/1997/06270/USE_OF_THE_METHYLXANTHINE_DERIVATIVE_A802715_IN.19.aspx) - Recently, methylxanthines such as pentoxifylline (PTX) were shown to be immunosuppressive in vitro. Unfortunately, when used in transplant patients, PTX was poorly active as an immunosuppressant.
George999 - can one get LDN in Australia - is it worth it in dealing with Peyronies Disease?- will it straighten things out a bit??
Hi guys thanks for the ideas and recommendations. And yea sorry for the misspelling of PAV. Going to call in to schedule a new appointment soon hopefully.
Quote from: Iceman on September 19, 2009, 02:35:37 AM
George999 - can one get Low Dose Naltrexone in Australia - is it worth it in dealing with Peyronies Disease?- will it straighten things out a bit??
At this point no one knows that answer to that question. Personally, I think its worth a try, especially for those who for some reason can't take Pentox. I also especially think its worth a try for someone with a LOT of other health problems because it is very likely to take care of at least some of them even if it doesn't take care of Peyronie's. I believe it IS available in Australia. It is sold by
Complementary Compounding Services (http://www.custommedicine.com.au/shop/dose-naltrexone-p-79.html) in Ballina, New South Wales. If you call them and talk to one of their pharmacists, they might be able to help you find a doctor who uses it in their practice. You might also look through the Low Dose Naltrexone thread for additional information. - George
Quote from: Exile999 on September 19, 2009, 02:36:32 AM
Hi guys thanks for the ideas and recommendations. And yea sorry for the misspelling of PAV. Going to call in to schedule a new appointment soon hopefully.
When you request Pentox from your doctor,
DO take the supporting research information that can be downloaded from the resource library on this website,
these two (https://www.peyroniesforum.net/index.php/topic,772.0.htm) and also
this one (https://www.peyroniesforum.net/index.php/topic,723.0.html).
GIVE your doctor a copy of each of these as supporting evidence. It is good to highlight the important spots in the articles in advance so the doctor doesn't have to read the whole thing to find them. Additionally,
DO NOT tell the doctor that you found out about this medication "on the Internet" or from posts on this website. Most doctors have a very low opinion of ideas found on the Internet for obvious reasons. Instead you need to present to the doctor a few scholarly papers written by reputable known physicians. That should open the door for either getting a prescription or if not, at least later getting a referral to someone who will give you a prescription. If you do need a referral later, you will want to make the best impression on your current physician now. - George
I have taken 10- 20mg of Cialis since 2003 but as my Peyronies has progressed, my erectile function has diminished and find that I cannot attain a sufficiently rigid erection for vaginal intercourse with 20mg these days. Do you think that Viagra or Levitra may be effective when cialis isn't?
Wintercookie,
I have no idea to be honest, but I to noticed decreasing erectile function slowly over time, until i got on pentox and used the VED. The VED gave me solid full erections the next day after I had used it, or hours later. I think it helps with this somehow, not exactly sure, but it must open up the blood vessels...
Comebackid
I have taken many and varied supplements and meds for Peyronies since 1998 and none have seemed to have had any noticeable affect on progression or resolution of my fibrosis.
Among those were
Full spectrum Vitimin E
ALC
San Vaso flow L'Arginine
MSM
Vitimin C
HGW
The Enzymes (can't remember their names)
and prescription meds
Cialis & Viagra
Tamoxifen
A Urologist told me a long time ago that they don't work but I refused to accept that since at the time the Peyronies was ravaging my penis. However since then I am firmly of the opinion that Supplements at least have no beneficial effects at all in the fibrotic process of Peyronies Disease.
Quote from: Wintercookie on September 22, 2009, 06:34:08 AM
A Urologist told me a long time ago that they don't work but I refused to accept that since at the time the Peyronies was ravaging my penis. However since then I am firmly of the opinion that Supplements at least have no beneficial effects at all in the fibrotic process of Peyronies Disease.
In most people I believe that oral treatments become less effective over time, and the condition stabalises. That's why surgery eventually becomes a vialbale option for many. I think at the beginnings of the fibrotic process oral treatments can make a difference (trental and so on), but when it has been totally stable for quite some time, I would tend to agree with your comments.
What is the purpose behind taking Viagra AND L'Arginine? Doesn't Viagra do everything that L'Arginine does?
Quote from: skunkworks on September 26, 2009, 12:51:58 AM
What is the purpose behind taking Viagra AND L'Arginine? Doesn't Viagra do everything that L'Arginine does?
Viagra is a PDE5 inhibitor
L Arginine is an NO agonist.
Their functions are related but not identical. As a result, they are synergistic. - George
They are synergistic (complement each other ) L-Arginine is actually a nitric oxide donor, not a nitric oxide antagonist.
L-arginine leads to the production on nitric oxide.
Nitric oxide stimulates the production of cyclic guanosine monophosphate (cGMP), a vasodilator that causes the arteries to let more blood in leading to an erection.
PDE5 breaks down the cGMP killing the erection by closing the artery down
Viagra inhibits the PDE5
In summary cGMP is the basic erection maker. Nitric oxide turns it on, PDE5 turns it off.
L-arginine makes the substance that turns an erection on and Viagra inhibits the stuff that prevents or turns an erection off.
Well that is good to know. I wasn't going to bother with arginine at all, but i'll be giving it a go now that I know that.
Is the effect reasonably instant, do you start producing more NO pretty much as soon as the arginine is fully digested?
Quote from: Hawk on September 26, 2009, 08:51:33 PM
They are synergistic (complement each other ) L-Arginine is actually a nitric oxide donor, not a nitric oxide antagonist.
Hawk is correct about L Arginine being a donor, not an agonist. Thanks Hawk! - George
Actually George, you had it right. L-arginine IS an agonist, and Hawk is right. L-arginine is not an antagonist.
In summary, an agonist promotes something and an antagonist prevents it. We think about or use the word "antagonistic" all the time in common use, but we do not usually say "he is an agonistic fellow" to mean the opposite.
Tim
Thanks Tim, so seldom do we use agonist that I misread the word.
My spell check does not even recognize it. :D
what is the accepted dose for pentox?
In this study Striking regression of subcutaneous fibrosis induced by high doses of gamma rays using a combination of pentoxifylline and alpha-tocopherol: an experimental studyhttp://www.ncbi.nlm.nih.gov/pubmed/10098440 (http://www.ncbi.nlm.nih.gov/pubmed/10098440). , the dose for rats was 1600mg/120kg which is a bit over 1 gram per kg.
Trental (pentox) comes in 400mg doses as far as I know, do those on this for Peyronie's just take one per day?
ps. I had a link to the study but was unable to post it.
Most people take 3 x 400mg tablets. Some take 2, and I have seen 4 mentioned in studies relating to some types of fibrosis, but you get the general idea. Ideally they should be spread out. I try to take it every 8 hours.
I was just reading the "Alternative Treatments" posts and noticed that someone is suggesting human growth hormone for Peyronie's pain. In fact, I think it was stated that it decreased the pain in a matter of days. I was reading about HGL and nothing regarding pain reduction was mentioned and it was also said to boost the immune system. If Peyronie's is an auto-immune problem wouldn't this treatment seem counter productive? This stuff is very exoensive, BTW! Hyperbaic chamber treatment is also mentioned on one of these threads. Anyone heard of that for Peyronie's? I'm posting it here, because there always seems to be a lively discussion taking place on this particular thread regarding oral treatments (not that hyperbaic is oral, but still lots of seemingly well informed participants here).
Fred
Fred, People with autoimmune problems also have problems with infections and such. If autoimmune problems are a result of the immune system being too strong, how can this be? The reality is that both a tendency to infections AND autoimmunity are a result of a weakened immune system. When you understand that multiple types of immune cells are needed for proper immune function and that those cells must work together, you can see how a weakened immune system can lead to either or both problems. Thus immune suppressants are just short term strategies that make things better in the short term, but make the problem worse in the long term. That said, I am no fan of HGH. I consider it to be a short cut to health that can make things worse in the long term. I would take it ONLY under the direct guidance of a medical doctor who is an HGH specialist. The bottom line is that its a hormone and bad things happen when you fool around with hormones. I am not saying that it cannot be helpful, I am saying that there are a lot of hucksters out there promoting it and they can leave you paying money and ending up worse off. - George
Quote from: George999 on September 30, 2009, 10:54:35 AM
Fred, People with autoimmune problems also have problems with infections and such. If autoimmune problems are a result of the immune system being too strong, how can this be? The reality is that both a tendency to infections AND autoimmunity are a result of a weakened immune system. When you understand that multiple types of immune cells are needed for proper immune function and that those cells must work together, you can see how a weakened immune system can lead to either or both problems. Thus immune suppressants are just short term strategies that make things better in the short term, but make the problem worse in the long term. That said, I am no fan of HGH. I consider it to be a short cut to health that can make things worse in the long term. I would take it ONLY under the direct guidance of a medical doctor who is an HGH specialist. The bottom line is that its a hormone and bad things happen when you fool around with hormones. I am not saying that it cannot be helpful, I am saying that there are a lot of hucksters out there promoting it and they can leave you paying money and ending up worse off. - George
That's what I was thinking. Not to mention the cost.
Some speculative thoughts on my part.
In the study
A Combination of Nutriments Improves Mitochondrial Biogenesis and Function in Skeletal Muscle of Type 2 Diabetic Goto–Kakizaki Rats (full text available (http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2391295)):
QuoteWe demonstrated that defect of glucose and lipid metabolism is associated with low mitochondrial content and reduced mitochondrial enzyme activity in skeletal muscle of the diabetic Goto-Kakizaki rats. The treatment of combination of R-α-lipoic acid, acetyl-L-carnitine, nicotinamide, and biotin effectively improved glucose tolerance, decreased the basal insulin secretion and the level of circulating free fatty acid (FFA), and prevented the reduction of mitochondrial biogenesis in skeletal muscle
Acetyl-L-carnitine has had good results in reducing Peyronies Disease curvature (http://www3.interscience.wiley.com/journal/120710070/abstract?CRETRY=1&SRETRY=0) in one study. In other threads, we have seen studies about taurine and niacin's ability to reduce fibrosis. Also, we know that type II diabetes is associated with Peyronies Disease. Perhaps there is some defect in "glucose and lipid metabolism" that makes Peyronies Disease more likely to occur.
I'm wondering whether the combination of things used in the study might be beneficial for Peyronies Disease. I have had mixed results with acetyl-L-carnitine by itself, and I'm looking to see whether there might be any synergies with other things like niacinamide (=nicotinamide).
s&s
Interesting. Biotin seems to come up as a collagen I antibody. I'm still trying to figure out how biotin interacts with collagen type I (the main type of collagen that's overexpressed in Peyronies Disease).
Edit: from the combination of nutrients study on the topic of biotin:
QuoteThird, biotin-dependent carboxylases play important role in mitochondrial function because four of the five biotin-dependent carboxylases are in the mitochondria. A high intake of biotin may exert effects on beta cells, liver and skeletal muscle, that favor good glucose tolerance [41]. In addition, it was shown that LA could reduce the activities of biotin-dependent carboxylases, such as pyruvate carboxylase and β-methylcrotonyl-CoA carboxylase, in rat liver while biotin co-treatment with LA could normalize these carboxylase activities [42]. Though the mild decreases in carboxylase activities caused by LA would presumably not cause pathology, it is always essential to keep homeostasis and avoid side-effects by a simple co-administration with biotin.
Positive results from both NAC and losartan in PMID 16641917, where the researchers are looking for a way to avold fibrosis caused by dialysis (rat study):
QuoteOmental transforming growth factor (TGF)-beta1, vascular endothelial growth factor (VEGF), collagen I, and heat-shock protein (hsp) 47 expression and lipid peroxide levels and dialysate VEGF and Ang II concentrations were significantly increased in rats treated with [peritoneal dialysis solution] compared to control. All of these changes were prevented by both NAC and losartan.
s&s
Quote from: George999 on September 05, 2009, 11:55:24 AM
What tangled webs we weave! EVERYTHING in life interacts. You change your drug regimen, supplements, or diet in order to try to fix one thing and that, in turn, screws up something else.
George, first off, let me express how sorry I am about your diagnosis. I know you will do everything you can and admire the fact that you continue to post here and investigate the relation between Peyronies Disease and various meds and conditions. Second, your comment about a tangled web is very true. Your announcement about MS got me reading, reading more than I should. Long story short, I'm waiting to go see a doctor to begin tests for Scleroderma. The docs haven't and won't even utter a prelminary diagnosis until the tests are complete since the nature of Scleroderma is not back and white.
Who would have thought that Peyronies Disease was just a symptom and not the actual problem, eh? Peyronies Disease has impications with autoimmune, collagen, fibroblasts, etc. MS and Scleroderma all have some these factors in common. Good luck to you.
Can we get a round up of possibly beneficial supplements and the recommended dose and reasons for taking them? Maybe copy the list from this post and add to it and correct me.
I'll start:
Vitamin E - anti scarring, one study on unrelated condition showed reversal of fibrosis while used in conjunction with pentox - DOSE = 400iu
L-arginine - nitric oxide agonist, seems to have anti fibrotic properties, works synergistically with pde5 inhibitors
niacin - s&s says so :)
Maverick, Thank you for your kind thoughts, but it turns out my diagnoses, which was tentative, was wrong and when I saw the neurologist, she ruled out MS. That is the good news. The bad news is that now I am back in the state of not knowing what I am facing. But indeed, it seems like most drugs and supplements do have dark sides and while fixing one thing can instigate another. For sure autoimmune diseases are legion and it is nearly impossible to sort them all out. But autoimmune reactions can be instigated by all kinds of environmental triggers, some benign and some serious and deadly in their own way. Autoimmune syndromes, infectious disease, cancer, they are all connected by their relationship to a faltering immune system. It is the immune system that protects us from both foreign pathogens and our own wayward cells and it is the immune system that shepherds a successful healing process. When the immune system slips, all sorts of bad things happen which we refer to as disease states. That is why I believe that in the end, it is the immune system which holds the key in curing Peyronie's. I am sure there will continue to be all sorts of helpful substances and strategies in the interim, but the real deal will be successfully rebooting the immune system so it can just proceed to do what it was designed to do: make us healthy in both mind and body and keep us healthy. I wish you the best in dealing with your own nameless health issues. Hopefully the tests will sort it all out for you and get you on your way. In my case, all of the many tests that have been done so far only indicate that I am in extraordinarily good health. My neurologist even thought that I was making it all up until I started to experience visible symptoms right before her eyes. Some of these things are extremely difficult to sort out. - George
Quote from: skunkworks on October 03, 2009, 08:39:37 PM
Can we get a round up of possibly beneficial supplements and the recommended dose and reasons for taking them?
Here are the supplements I take in the morning on an empty stomach specifically for Peyronies Disease:
- ALCAR (2 g)
- l-Arginine (2 g)
- Biotin (5 mg)
- Carnosine (500 mg)
- Curcumin (600 mg in coffee with coconut oil, soy lecithin, and resveratrol)
- Niacin (inositol hexanicotinate, 2g)
- Pycnogenol (100 mg)
- NAC (600 mg)
- Na-RALA (100 mg)
- trans-Resveratrol (500 mg)
- Taurine (2 g)
I'm still uncertain about the best form of niacin to take.
QuoteRats in the treatment groups were administered 50, 100 or 200 mg/kg berberine, intragastrically, daily for 4 weeks. Serum levels of alanine aminotransferase (ALT) and serum aspartate aminotransferase (AST), hepatic activity of superoxide dismutase (SOD) and hepatic malondialdehyde (MDA) and hepatic hydroxyproline (Hyp) content were determined. Liver biopsies were obtained for histological and immunohistochemical studies to detect the expressions of alpha-smooth muscle actin (SMA) and transforming growth factor (TGF)-beta1. 3. The results showed that, compared with the fibrotic control group, serum levels of ALT and AST and hepatic content of MDA and Hyp were markedly decreased, but the activity of hepatic SOD was significantly increased in berberine-treated groups in a dose-dependent manner. In addition, histopathological changes, such as steatosis, necrosis and myofibroblast proliferation, were reduced and the expression of a-SMA and TGF-b1 was significantly downregulated in the berberine-treated groups (P < 0.01). 4. These results suggest that berberine could be used to prevent experimental liver fibrosis through regulation of the anti-oxidant system and lipid peroxidation.
- www.ncbi.nlm.nih.gov/pubmed/17973934
My biggest issue right now is that I've had a spike in the intensity of my pain. I've been in pain now for 3 1/2 years, but it decreased in intensity in the spring of 2008 and I stopped taking the ibuprofen (600 to 1200 mg each night and needed more). For the last few weeks the major pain seems to be returning. I took 800 mg ibuprofen last night and it gave me a little relief, but not much. I'm wondering if I've reinjured myself. One morning a few weeks a go I woke up with a partial erection and, half asleep, rolled out of bed. When I rolled out, I rolled over on my penis. There was no immediate pain and I really can't remember if the pain was spiking before or after this happened. (After daily pain for this length of time, events tend to become blurred). Anybody think such a minor event could cause more injury? All my former uro would prescribe was Vitamin E to "soften up the plaque". I'm in search of a local uro who will prescribe pentox. Meanwhile, I'm looking for anything that will relieve the pain. What supplements , diet change, etc. are recommended for that specific problem? (Pain) I know this is not an issue with some, as I've read that many have not experienced pain, or maybe only minor pain or painful erections. My pain is there in flaccid state and definitely increases when I'm under even minor stress. All I'm taking now is Vit. E and taurine. I know the idea is to control the inflammation thereby controlling the pain, but my pain seems to just come and go with no apparent pattern. I guess what I'm asking is for those who have pain, how are you managing it? Thanks.
Fred
Thanks for the post, newguy.
Sources of berberine include barberry root fluid extract, Chinese Goldthread, and Oregon Grape.
Some products and their berberine content:
- Nature's Answer, Echinacea & Goldenseal (http://www.iherb.com/Nature-s-Answer-Echinacea-Goldenseal-Alcohol-Free-2-fl-oz-60-ml/5169?at=0): 5 mg
- New Chapter, Zyflamend (http://www.iherb.com/New-Chapter-Zyflamend-120-Softgel-Capsules/77?at=0): 2.4 mg
- Nature's Way, Oregon Grape Root (http://www.iherb.com/Nature-s-Way-Oregon-Grape-Root-475-mg-100-Capsules/2023?at=0): ?? mg
- Thorne Research, Berbercap, Oregon Grape Root Extract (http://www.iherb.com/Berbercap-Oregon-Grape-Root-Extract-60-Veggie-Caps/18577?at=0): 160 mg
- Nature's Answer, Goldenseal (http://www.iherb.com/Nature-s-Answer-Goldenseal-Organic-Alcohol-Extract-1-fl-oz/5189?at=0): 10 mg
- Herb Pharm, Coptis (http://www.iherb.com/Herb-Pharm-Coptis-1-fl-oz-29-6-ml/13985?at=1): ?? mg
s&s
Quote from: Fred22 on October 07, 2009, 12:03:27 PM
What supplements , diet change, etc. are recommended for that specific problem?
Ouch, Tylenol is really hard on the liver. I've never tried pentox, so I can't give any feedback on it. For a nutritional supplement, the best I've found by far is curcumin.
Try 600mg or so, once or twice daily. Curcumin is oil soluble, so it really benefits by taking it with oil. I add it to coffee with coconut oil and soy lecithin. Mixing it with olive oil in a tablespoon is good too. You can get it as a
bulk powder (http://www.easycart.net/BeyondACenturyInc./Herbals_C-E.html#8550) or open your
capsules (http://www.iherb.com/Jarrow-Formulas-Curcumin-95-500-mg-60-Capsules/106?at=0).
dp
Quote from: slowandsteady on October 07, 2009, 12:26:32 PM
Quote from: Fred22 on October 07, 2009, 12:03:27 PM
What supplements , diet change, etc. are recommended for that specific problem?
Ouch, Tylenol is really hard on the liver. I've never tried pentox, so I can't give any feedback on it. For a nutritional supplement, the best I've found by far is curcumin.
Try 600mg or so, once or twice daily. Curcumin is oil soluble, so it really benefits by taking it with oil. I add it to coffee with coconut oil and soy lecithin. Mixing it with olive oil in a tablespoon is good too. You can get it as a bulk powder (http://www.easycart.net/BeyondACenturyInc./Herbals_C-E.html#8550) or open your capsules (http://www.iherb.com/Jarrow-Formulas-Curcumin-95-500-mg-60-Capsules/106?at=0).
s&s,
Thanks for the info. I've been consideing curcumin. I have some coconut oil. What would you do if you wanted to take it straight (I don't drink coffee), just follow the capsules with a teaspoon of coconut oil? Regarding your reference to Tylenol. I don't take Tylenol which is not an anti-inflammatory....I take generic ibuprofen (Motrin, Advil, are some brand names), but it also has unwanted side effects. It can cause bleeding of stomach lining and it may increase chances of heart attack and stroke. Does the curcumin work immediately or does it take a matter of days, weeks, months to kick in? How bad is your pain on a scale of 1 to 10 and how long have you been experiencing pain? Is it daily or intermittant? Thanks again!
Fred
Fred - The pain aspect is very difficult to deal with I agree. On my first bout of peyronie's I didn't really have to deal with pain in any meaningful way. After my raction injury i've been dealing with pain/discomfort for over a year and a half. It isn't contstant and it isn't intense, but it's there. Sometimes it goes, but then returns. I am worries about what the end game of this pain will be, because small changes are now taking place (slight indentation - though that appears to have stopped and is very slight indeed, but now a nodule). The nodule is very small and literally appeared overnight. Mentally i've decided that if the pain goes away and there aren't massive changes, i'm going the surgery route. What keeps me sane is the knowledge that I'm doing EVERYTHING in my power to keep on top of this. If it still going downhill I will be very pissed off, but at least i'll know i'm trying my hardest to keep this under control. I'll post my oral supplement list later today.
I'd advise you to really fasttrack the pentox move, because it's something that has some success behind it. Also, think about trying topical ibuprofen, as it has been shown to penetrate beneath the skin, but not only a fraction of it enters your system, so its much safer than oral ibuprofen. Studies in knee injuries have demonstrated this, and I see no reason why it wouldn't apply to the penis.
Curcumin in coconut oil (as advied below) is a good option too. I'd get on l-arginine and pycnogenol too to ensure firm erections.
Quote from: Fred22 on October 07, 2009, 01:01:03 PM
Does the curcumin work immediately or does it take a matter of days, weeks, months to kick in? How bad is your pain on a scale of 1 to 10 and how long have you been experiencing pain? Is it daily or intermittant? Thanks again!
Curcumin works within an hour and lasts a half day for me. My pain is about 3-4 without any interventions (I do have a high pain tolerance though) and curcumin pounds it down to hard to detect. Today without curcumin it's about a 2 (I'm testing feverfew (http://www.iherb.com/Now-Foods-Feverfew-400-mg-100-Capsules/2449?at=0) by itself).
You can put a spoon of coconut oil in warm water. You could probably just pour the caps into your mouth and swish it with coconut oil too.
Quote from: slowandsteady on October 07, 2009, 12:16:50 PM
Thanks for the post, newguy.
Sources of berberine include barberry root fluid extract, Chinese Goldthread, and Oregon Grape.
- Thorne Research, Berbercap, Oregon Grape Root Extract (http://www.iherb.com/Berbercap-Oregon-Grape-Root-Extract-60-Veggie-Caps/18577?at=0): 160 mg
s&s
The above option certainly looks like a good one. There are quite a few good suggestiosn being bandied about lately. Maybe we will eventually need a list of potentially useful new additions.
Quote from: newguy on October 07, 2009, 02:28:50 PM
The above option certainly looks like a good one. There are quite a few good suggestiosn being bandied about lately.
I should be getting it in a couple of days. Hopefully the berberine and feverfew will complement one another. When looking at what goes on in Peyronies Disease tissue (increased numbers of leukocytes, TGF-beta 1, alpha-smooth muscle actin, and myofibroblast count), it seems to be tricky to tell which elevated parameter is responsible for elevating other parameters.
For example, lowering TGF-beta 1 might be beneficial, but if elevated TGF-beta 1 results from elevated alpha-smooth muscle actin, then it's only a secondary effect.
Quote from: slowandsteady on October 07, 2009, 02:52:04 PM
For example, lowering TGF-beta 1 might be beneficial, but if elevated TGF-beta 1 results from elevated alpha-smooth muscle actin, then it's only a secondary effect.
I'll be interetsed to know how the combo works for you.
Peyronie's a bit of a puzzle and there jusr aren't enough studies out there to form firm conclusions in this area. Hopefully if we try enough different ways of attacking peyronie's we will eventually hit on certain combinations of treatments that further reveals the workings of this condition and really do set people on the road to recovery.
Either feverfew or goldenseal root extract did not agree at all with my Peyronies Disease. I had to double up on the curcumin (1.2g) to stop the pain. I'm putting both on the side for the moment, though I'll give the Oregon Grape extract (80% berberine) a trial when it comes in.
Quote from: slowandsteady on October 08, 2009, 11:25:23 AM
Either feverfew or goldenseal root extract did not agree at all with my Peyronies Disease. I had to double up on the curcumin (1.2g) to stop the pain. I'm putting both on the side for the moment, though I'll give the Oregon Grape extract (80% berberine) a trial when it comes in.
Sorry to hear that s&s. Do you think it's worth trying again at a later date to be certain? If feverfew or goldenseal is to blame, I wonder what about them caused this.
Has your curvature changed at all over recent months? It seems that despite the pain, your regime is keeping worsening of the condition at bay. Either that or certain changes have naturally come to a stop. The fact that certain supplements appear to work well for you, is heartening. It's a shame we have nothing at our disposal that puts a stop to pain once and for all over a short period of time! That's the holy grail.
I have a slight curvature to the right (where the most active plaque is), a few degrees.
One thing I'm trying to figure out is why, when substances like curcumin or pentox can knock down inflammation to relatively low levels, inflammation will come back when they are withdrawn. Maybe the answer to that question is the same answer to the question of why Peyronies Disease starts in some men after minor trauma, whereas other men can have the same trauma but no Peyronies Disease.
After knocking down inflammation, heal quickly to stop the cycle. Maybe a healing agent like Astragalus, when used in a low inflammation state, might put the fire out.
Quote from: slowandsteady on October 08, 2009, 07:59:04 PM
One thing I'm trying to figure out is why, when substances like curcumin or pentox can knock down inflammation to relatively low levels, inflammation will come back when they are withdrawn. Maybe the answer to that question is the same answer to the question of why Peyronies Disease starts in some men after minor trauma, whereas other men can have the same trauma but no Peyronies Disease.
It's certainly a difficult situation to get a handle on. Another curiosity to me is that penis surgery, which is surely quite drastic and does cause damage, rarely causes new bouts of inflammation in those with peyronie's disease. It appears that the ongoing inflammation is only ongoing when certain criteria is met. All injuries are apparently not equal. Maybe peyronie's involves tiny open wounds that for whatever reason has no way of healing an attracts low level inflammation to the surrounding tissue. I really don't know, as no one theory appears to make complete sense.
I have some Astragalus and Revgenetics Astragaloside IV supplements, so I might start them up and see what happens. They shouldn't be taken with resveratrol apparently, so maybe I'll take res in the day and astra at night.
Fred- Sorry to hear about your problems with the pain from Peyronies Disease. I also have had Peyronies Disease for about 2 and half years now and have had constant pain ranging from almost unbearable to very irritating. I have talked to 4 or 5 urologist about it including Dr. Levine in Chicago and Dr. Larry I Lipschultzs in Houston. Dr. Levine gave me a open puzzled look about it with no options or offerings to help with it. Dr. Lipschultzs prescribed Celebrex two times to try and help with it. I only got the Celebrex because I asked two to three times if there was anything he could do. He would only give me a 30 day prescription for it because of long term side effects.
Its very hard mentally when the pain never stops it just makes you constantly think about your problem. I think in general that Urologist think we shouldnt have pain at all after the 12 to 18 month period that they have textbook for stabalization. As we all know being Peyronies Disease suffers that those are very loose numbers and are not concrete at all.
I ve come to the conclusion from asking 4 different doctors in this past 2 and half years is they do not have or will not give anything for the pain.
Iam currently taking vit E, L Argine, Viagra, ALC, & Saw Palmetto. I also use the VED. I only use the large cylinder because I try to stay gentle as possable and not make the pain worse or cause further damage. I ve noticed I added the ALC and Saw Palmetto about two weeks ago and I am noticing some improvement with the pain. I also think the gentle use of the VED helps with the pain too at least for me. I just judge if it hurts a little to much then I lay off for a night or two. Then resume once it subsides a bit.
I hope some of this helps hang in there We are kind of rare birds in the Peyronies Disease game with long term constant pain. If you have any questions feel free to ask me. I ve been trying to chip away at this for a long while too.
Woodman
Quote from: Woodman on October 09, 2009, 12:27:18 AM
I ve noticed I added the ALC and Saw Palmetto about two weeks ago and I am noticing some improvement with the pain. I also think the gentle use of the VED helps with the pain too at least for me.
Woodman
Woodman,
why are you taking Saw palmetto? Do you have prostate issues. Pls donot take SP as it is nataural alternative of Propecia, a 5-AR Gene inhiibhitor.It decreases DHT & its metabolite & hence is affects hormonal profile in Males. Many people suffer sexual sides from 5-ar inhibhitors, so be cautious before taking SP. I hope this helps
Quote from: Woodman on October 09, 2009, 12:27:18 AM
Fred- Sorry to hear about your problems with the pain from Peyronies Disease. I also have had Peyronies Disease for about 2 and half years now and have had constant pain ranging from almost unbearable to very irritating. I have talked to 4 or 5 urologist about it including Dr. Levine in Chicago and Dr. Larry I Lipschultzs in Houston. Dr. Levine gave me a open puzzled look about it with no options or offerings to help with it. Dr. Lipschultzs prescribed Celebrex two times to try and help with it. I only got the Celebrex because I asked two to three times if there was anything he could do. He would only give me a 30 day prescription for it because of long term side effects.
Its very hard mentally when the pain never stops it just makes you constantly think about your problem. I think in general that Urologist think we shouldnt have pain at all after the 12 to 18 month period that they have textbook for stabalization. As we all know being Peyronies Disease suffers that those are very loose numbers and are not concrete at all.
I ve come to the conclusion from asking 4 different doctors in this past 2 and half years is they do not have or will not give anything for the pain.
Iam currently taking vit E, L Argine, Viagra, ALC, & Saw Palmetto. I also use the VED. I only use the large cylinder because I try to stay gentle as possable and not make the pain worse or cause further damage. I ve noticed I added the ALC and Saw Palmetto about two weeks ago and I am noticing some improvement with the pain. I also think the gentle use of the VED helps with the pain too at least for me. I just judge if it hurts a little to much then I lay off for a night or two. Then resume once it subsides a bit.
I hope some of this helps hang in there We are kind of rare birds in the Peyronies Disease game with long term constant pain. If you have any questions feel free to ask me. I ve been trying to chip away at this for a long while too.
Woodman
Woodman,
You're so right about the constant pain causing one to stay preoccupied with the problem. I was in cognitive behavior therapy for some other issues before I was diagnosed with Peyronie's and it helped quite a bit. At the time I had already started to experience some pain, but no curvature. I was seeing the therapist for generalized anxiety disorder and paruresis (shy bladder). The therapist I was working with does a lot of work with patients with chronic pain issues, so I think I'm going to start seeing him again. The paruresis, which is classified as a social anxiety disorder, was improving with gradual exposure to increasingly more difficult situations. After I was diagnosed with Peyronie's I realized the the Peyronie's symptoms were exacerbating the paruresis as the pain was causing hesitation when trying to urinate in public. Consequently I've become more reclusive. I avoid going to concerts, rarely take my wife out to dinner, etc. The Peyronie's has set up another vicious cycle for me and I'm definitely going to get back into therapy. I was wondering if we could start a "Pain" thread for those of us who have this almost daily long term pain problem? Maybe all who have this problem could post regarding coping tools, pain management, drungs, supplements, etc. for dealing with long term chronic pain.
Fred
Well most of my treatments are yet to start, due having to special order pentox and naltrexone, and I have no VED yet due to unapologetic idiocy in the Fitzz shipping department.
However I am seeing some improvement in erection quality, just with the household treatments I am using atm.
I am taking horny goat weed, vit E and flax seed oil. Morning wood is very woody. I am also using traction a few hours a day.
I need arginine and niacin, maybe taurine.
Quote from: skunkworks on October 10, 2009, 09:25:41 PM
I need arginine and niacin, maybe taurine.
I don't know of any in australia, but it might be worth looking further afield if you can get better deals. iherb.com was mentioned here many times, and eventually I gave them a go. Delivery to the UK was very fast (about 4 days), so maybe they deliver to the states too. If the delivery cost is reasonable to that destination then it might be a good choice. Check up local VAT/Duty charges too.
I'm interested in buying bulk powders of taurine and so on, as I'll be cheaper. If anyone has any suggestions for that, I'd appeciate it.
Quote from: newguy on October 10, 2009, 09:44:06 PM
I'm interested in buying bulk powders of taurine and so on, as I'll be cheaper. If anyone has any suggestions for that, I'd appeciate it.
Here's what I have: http://www.iherb.com/Now-Foods-Taurine-Powder-8-oz-227-g/7425?at=0
So niacin or niacinimide? Which is better and what is the difference?
Great call on Iherb by the way, looks like a winner.
Quote from: skunkworks on October 11, 2009, 07:41:13 AM
So niacin or niacinimide? Which is better and what is the difference?
Actually, there are three: nicotinic acid (often just referred to as niacin), niacinamide, and inositol hexanicotinate. Nicotinic acid can cause the niacin flush, which I think is good but you should be aware of it before you go running to the emergency room after taking a bunch on an empty stomach ;).
I don't know which is better; it's an on-going debate. I take a bit of all three to hedge my bet. Inositol hexanicotinate may be a good choice. I use this one (http://www.iherb.com/Now-Foods-Flush-Free-Niacin-Double-Strength-500-mg-90-Vcaps/1102?at=0). For nicotinic acid I use this one (http://www.iherb.com/Nature-s-Way-Niacin-Nicotinic-Acid-100-mg-100-Capsules/1999?at=0). I use this niacinamide (http://www.iherb.com/Now-Foods-Niacinamide-500-mg-100-Capsules/704?at=0).
Quote from: slowandsteady on October 11, 2009, 12:05:54 PM
Actually, there are three: nicotinic acid (often just referred to as niacin), niacinamide, and inositol hexanicotinate. Nicotinic acid can cause the niacin flush, which I think is good but you should be aware of it before you go running to the emergency room after taking a bunch on an empty stomach ;).
I rarely get any negative impact from supplements, but the first time I took niacin I become so hot and tingly that I thought I was having a panic attack!! For those wishing to take it rather than the alternatives, the flushing does diminish somewhat if you stick with niacin. Also, it is thought that taking aspirin 30 minutes before niacin significantly reduces the flushing, so if you're already taking it, you might want to organise your time accordingly: http://www.healthy.net/scr/Article.asp?Id=785
Can anyone help:
I need to place an online order at iherb for my supps as I have run out of:
Larg, ALC and Tribulus.
Can anyone let me know a good/decent grocery list that I should order @ iherb as it has to be freighted internationally and I do this every 6 months. Therefore this order must be thorough and up to date of the best products on the market or as recently discovered to help Peyronies Disease.
Thx
I'm starting to think that DHEA is crucial after taking it for a few days now. I supplement with the 7-keto form (I've started 300 mg/day) since my testosterone is fine. This is what I use, Iceman:
Taurine (http://www.iherb.com/Now-Foods-Taurine-500-mg-100-Capsules/852?at=0), 7-keto DHEA (http://www.iherb.com/Now-Foods-7-KETO-DHEA-Metabolite-100-mg-60-Vcaps/961?at=0), pycnogenol (http://www.iherb.com/Healthy-Origins-Pycnogenol-100-mg-60-Veggie-Caps/4128?at=0), l-arginine (http://www.iherb.com/Now-Foods-L-Arginine-500-mg-250-Capsules/359?at=0), niacin (http://www.iherb.com/Now-Foods-Flush-Free-Niacin-Double-Strength-500-mg-90-Vcaps/1102?at=0), NAC (http://www.iherb.com/Jarrow-Formulas-N-A-C-Sustain-600-mg-100-Tablets/135?at=0), vitamin E (http://www.iherb.com/Jarrow-Formulas-Gamma-E-300-120-Softgels/205?at=0), and biotin (http://www.iherb.com/Now-Foods-Biotin-5-000-mcg-60-Vcaps/447?at=0).
Iceman - I think a good regime includes:
Pentox
L-arginine + Pycnogenol
Viagra/Cialia/Levitra (though not all three ;))
Taurine + Niacin (I've been impressed with the various taurine studies, and the niacin ones that s&s found make me think they may be useful in combination)
NAC , ALC
Obviously you can't buy presciption meds from iherb, but I'm definitely suggest stocking up on the rest..
If you're looking to expand further maybe include vitamin e, d3, fibrozym
Quote from: slowandsteady on October 11, 2009, 10:45:20 PM
I'm starting to think that DHEA is crucial after taking it for a few days now. I supplement with the 7-keto form (I've started 300 mg/day) since my testosterone is fine. This is what I use, Iceman:
Taurine (http://www.iherb.com/Now-Foods-Taurine-500-mg-100-Capsules/852?at=0), 7-keto DHEA (http://www.iherb.com/Now-Foods-7-KETO-DHEA-Metabolite-100-mg-60-Vcaps/961?at=0), pycnogenol (http://www.iherb.com/Healthy-Origins-Pycnogenol-100-mg-60-Veggie-Caps/4128?at=0), l-arginine (http://www.iherb.com/Now-Foods-L-Arginine-500-mg-250-Capsules/359?at=0), niacin (http://www.iherb.com/Now-Foods-Flush-Free-Niacin-Double-Strength-500-mg-90-Vcaps/1102?at=0), NAC (http://www.iherb.com/Jarrow-Formulas-N-A-C-Sustain-600-mg-100-Tablets/135?at=0), vitamin E (http://www.iherb.com/Jarrow-Formulas-Gamma-E-300-120-Softgels/205?at=0), and biotin (http://www.iherb.com/Now-Foods-Biotin-5-000-mcg-60-Vcaps/447?at=0).
Do you still take carnosine? I heard that it depletes taurin from the body so I stopped taking beta-alanine for now. I might give biotin a try. I'll make an order in a month or so and add anything that I think might help. What's the thinking behind taking DHEA?
newguy - why take NAC and not ALC??
Quote from: Iceman on October 11, 2009, 11:17:28 PM
newguy - whats NAC??
From Wikipedia:
Acetylcysteine, also known as N-acetylcysteine or N-acetyl-L-cysteine (abbreviated NAC), is a pharmaceutical drug used mainly as a mucolytic agent and in the management of paracetamol (acetaminophen) overdose.And:
Acetylcysteine is used in the treatment of interstitial lung disease to prevent disease progression.And:
The IV injection and inhalation preparations are, in general, prescription only, whereas the oral solution and the effervescent tablets are available over the counter in many countries.- George
George - does this mean the NAC should be on the shopping list??
Quote from: newguy on October 11, 2009, 11:04:24 PM
Do you still take carnosine? I heard that it depletes taurin from the body so I stopped taking beta-alanine for now.
I did not know that. I do take it on occasion, plus it's in meat.
QuoteWhat's the thinking behind taking DHEA?
I posted about it here (https://www.peyroniesforum.net/index.php/topic,38.msg22531.html#msg22531). It seems to be helping so far.
Quote from: slowandsteady on October 12, 2009, 12:54:15 AM
Quote from: newguy on October 11, 2009, 11:04:24 PM
Do you still take carnosine? I heard that it depletes taurin from the body so I stopped taking beta-alanine for now.
I did not know that. I do take it on occasion, plus it's in meat.
A number of animal studies on beta-alanine appear to suggest that it can seriously depletes taurine. If it's try for beta-alanine I suspect it's true for carosinine, though I'm of course be happy if that isn't the case. It could be that the doses in humans to ellicit depletion is very high (since high doses are often used in animal studies). That would be an angle that would remove this potential problematic finding (for those wanting to take both supplements). Also, it could be that this issue doesn't transfer to humans, but studies do suggest that beta-alanine and taurine compete for absoption. On some bodybuilding sites they mentioning cycling beta-alanine.
Quote"Taurine was found to inhibit beta-alanine uptake into neurons and astrocytes in a competitive manner, with Ki values of 217 microM in neurons and 24 microM in astrocytes. beta-Alanine was shown to inhibit taurine uptake in neurons and astrocytes, also in a competitive manner, with Ki values of 72 microM in neurons and 71 microM in astrocytes."
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=309020 0&dopt=Abstract
"The uptake systems for taurine and beta-alanine were thus in principle similar, and they exhibited certain characteristics typical for a neurotransmitter amino acid. The inhibition studies further suggest the existence of only one common transport system for taurine, beta-alanine, and GABA in cultured primary astrocytes. The same uptake system may also be used for hypotaurine."
Looks like they perhaps both inhibit one another. Maybe cycling or dosing at difference times of day would reduce the problem. It might just be a case of keeping them apart from one another.
Ok I now have naltrexone and pentox. One question, I have seen these words posted here "for those who can't use pentox". Why can certain people not use pentox? Do some suffer unbearable side effects, and if so what are they?\
Will soon be putting in a supplements order.
At the moment my shopping list consists of:
l-arginine powder
Flush Free Niacin
taurine
Quote from: skunkworks on October 12, 2009, 02:30:15 AM
Why can certain people not use pentox? Do some suffer unbearable side effects, and if so what are they?\
Pentox can cause some gastrointestinal side effects such as nausea, diarrhea and gas and occasionally causes dizziness. I had a bit of nausea the first few weeks but now it doesn't really bother me (I'm 4 months in now). I spread out the doses (at least 5 hours apart, if not more) and found certain foods agree better with pentox than others. Other than some GI side effects, pentox has low toxicity. Afterall, it is prescribed on label for people who are close to losing hands and feet due to complications with diabetes-if you are generally healthy there shouldn't be any problems. Of course, follow you doctor's instructions at all times.
On the upside and non-Peyronie's related, I notice my recovery times for running are much reduced and that I have fewer aches and pains post-workout. I think the tissue oxygen boost from pentox is a big plus for my workouts. So, uh, silver lining I guess?
Best,
Skjaldborg
I've only noticed a few with pentox- dry mouth, difficulty in reaching orgasm, and diahrea like symptoms.
On the up side, I've noticed solid full erections, what appears to be more flexibility and softening of some of my plaque, increase in size, and less curvature ( I don't know if this is due to the blood thining effect, and the ability of the blood to get to all areas of the penis or not).
If I take my pentox with food I never have an upset stomach. If you don't take it with food you can get upset stomach.
The only concern I have is the downregulation of the immune system caused by pentox, is it permanent, does it weaken the immune system, is it dangerous to be on long term? Maybe Tim or someone else can way in on this.
Overall this is the best treatment I've found to date.
im getting allot of tounge ulcers recently - could this be from my immune system being weak from pentox? - been on pentox for nearly 1.5 yrs now
I did feel slightly nauseous today, but I have not yet eaten and it is now 4pm, so have had 2 doses of pentox.
Iam one who cannot tolerate the side effects from Pentox. It makes me very depressed & withdrawn. I have a very hard time concentrating and I become quite. I am usually an outgoing talkative person normally. I tryed three different attempts with the same effects. It builds slowly and peaks at 8 to 12 weeks useage.
I asked my doctor about it and at first he said he hadn't had any other patients with the same complaints. Then a couple months later he told me during a visit that he had another man experience the same effects. He asked me to elaborate on it a little so he could learn for his patients in the future.
Is there anyone here on LDN for there Peyronies Disease? I noticed someone mention earlier that it was used by people who couldn't take Pentox. I ve read about it on the naltrexone website and it seems very interesting sense Peyronies Disease is thought to be autoimmune. I believe it is autoimmune IMO.
If there is anyone on LDN could you please post your experience with it. It would be great to have something new to try. When I asked the doctor he told me there isn't anything to substitute Pentox unfortunately.
Woodman
Just to recap some things regarding Low Dose Naltrexone.
1) At this point there is absolutely no overt research evidence that Low Dose Naltrexone is helpful in the case of Peyronie's Disease. That is the unfortunate bottom line.
2) The caveat to number one is that A) Low Dose Naltrexone is known to be beneficial for people with a wide range of problems, including, but not limited to autoimmune problems. And B) that Low Dose Naltrexone, like Pentox, is very inexpensive, easy to take, and low risk. And C), that Low Dose Naltrexone, unlike Pentox, strengthens the immune system.
3) At this point, there are guys here who have tried or are trying Low Dose Naltrexone, but it is going to take a substantial amount of time to collect the kind of experiential evidence that will give any kind of indicator that it might be helpful.
4) The overall bottom line with Naltrexone is that if you can get a doctor to prescribe it for you, it is almost certainly not going to harm you, and it might fix other health problems if not the Peyronie's.
5) Along with Naltrexone, I also recommend that people who can't tolerate Pentox try to get their vitamin D levels in order unless they have prostate cancer issues.
- George
Hi Guys,
This is my first post in this forum. I've been following it somewhat since last year when i was first diagnosed with Peyronnies. The urologist I saw last year didn't so anything other than tell me to take Vitamin E everyday. I have since moved out of state and found a urologist in the Baltimore area that specializes in Peyronnies. He has me taking Colchicine everyday and 50mg Viagra 3x a week. I've read that Colchicine is used for Peyronnies treatment and is supposed to inhibit scar production, but I don't really see anyone in this forum taking it. Does anyone have any experience with this drug and it'e effectiveness?
I am also taking Vitamins E and C along with L-Arginine twice a day. I haven't noticed any benefits yet from taking these drugs and vitamins...not sure if they are helping or not. I never did experience any pain from my Peyronnies so that hasn't been an issue for me. I curve to the right about 30-35 degrees, have an indentation on the right side and the distal portion of my penis curves up too. I've lost about 1 1/2 inches in length. I just started using the Andropenis traction last week to help with the curvature and the lost length. Pretty depressing dealing with this issue. Luckily I have a very understanding wife who is very supportive, so I am blessed in that regard.
My uro says there is a phase 2 study coming up early next year that I may have an opportunity to participate in. It involves injecting Cholchinase directly into the scar tissue and he said the results so far look very promising. Has anyone else heard anything about this drug and it's effectiveness?
Mike
chopsuey
Be careful this stuff has some nasty side effects. This is a quick google of Colchicne
Adverse reactions in decreasing order of severity are: bone marrow depression, with aplastic anemia, with agranulocytosis or with thrombocytopenia may occur in patients receiving long-term therapy. Peripheral neuritis, purpura, myopathy, loss of hair, and reversible azoospermia have also been reported
If you think you ever want a child or another child this stuff kills sperm.
Jackp
JackP,
Thanks for the warning...I didn't see those listed anywhere. I'll talk to my doc about it.
I also misspelled "collagenase" when referring to the phase II study injections.
Do you think ldn could render pentox ineffective?
Quote from: skunkworks on October 13, 2009, 06:19:35 PM
Do you think Low Dose Naltrexone could render pentox ineffective?
That would be surprising, since for me at least, it doesn't render curcumin ineffective.
Quote from: slowandsteady on October 13, 2009, 06:36:15 PM
Quote from: skunkworks on October 13, 2009, 06:19:35 PM
Do you think Low Dose Naltrexone could render pentox ineffective?
That would be surprising, since for me at least, it doesn't render curcumin ineffective.
Hmm I guess I need to read up more on how Pentox actually works to help Peyronie's. I thought it was due to its mild immune suppression, but this is not the case?
Regarding LDN and Pentox, I think the jury is still out on this one. LDN stimulates the immune system and Pentox suppresses it. Thus the intuitive answer would be that these two would not work out together. But intuitive answers are sometimes wrong. In the case of Pentox, it does not suppress the immune system broadly or directly, but rather narrowly and indirectly by blocking cytokines, not be directly suppressing immune function like a classic immune suppressant such as Prednisone or Interferon. LDN, on the other hand is believed to be a very broad immune system stimulant. Oh, and by the way, I am just now celebrating the arrival of a bottle of LDN pills. So I, myself, am facing this dilemma. At this point I am planning on doing both. In this way I will be using LDN in an attempt to make my immune system stronger and smarter while at the same time attempting to take advantage of the protective effects of Pentox. So we will see how all of this works out and I will keep you all posted. - George
http://www.peyronies-disease.co.uk/2009/10/long-term-pentoxifylline-treatment.html (http://www.peyronies-disease.co.uk/2009/10/long-term-pentoxifylline-treatment.html)
George99 - I am also using both.
I found this:
QuoteThe mechanism is not fully understood; pentox blocks the transforming growth factor (TGF) B1- mediated pathway of inflammation, prevents deposition of collagen type 1, and acts as a nonspecific (PDE) inhibitor.
So it seems tgf - beta1 is the clincher here, I need to find out what effect LDN has on it. Internet gives me not much info so may have to try and find researcher emails.
I've been on pentox for 6 months now and during this have not incorporated any other supplements except for D3.
Should I add in l-arginine and pycnogenol daily? What if I do have "kind of routine, but not every" morning erections and do not experience difficulty acheiving an erection when called for? Will it still be beneficial?
Quote from: ashen311 on October 15, 2009, 02:12:00 PM
I've been on pentox for 6 months now and during this have not incorporated any other supplements except for D3.
Should I add in l-arginine and pycnogenol daily? What if I do have "kind of routine, but not every" morning erections and do not experience difficulty acheiving an erection when called for? Will it still be beneficial?
I think so. The combination increases NOx, which further reduces TGF-beta1.
Quote from: slowandsteady on October 15, 2009, 02:52:15 PM
Quote from: ashen311 on October 15, 2009, 02:12:00 PM
I've been on pentox for 6 months now and during this have not incorporated any other supplements except for D3.
Should I add in l-arginine and pycnogenol daily? What if I do have "kind of routine, but not every" morning erections and do not experience difficulty acheiving an erection when called for? Will it still be beneficial?
I think so. The combination increases NOx, which further reduces TGF-beta1.
I will give it a try then. Ordering both the Now Foods L-Arginine 500mg and Healthy Origins Pycnogenol 100mg.
Hello Folks,
Been a while since I posted. Since learning about the inflamatory connection of Peyronies Disease, I went on a journey of discovery regarding inflamation. I have also become more healthy then I have ever been in my life. In the gym that I worked out in, I was advised by the coach/nutritionist to start taking Fish Oil supplements to help with recovery from work-outs and to address nagging pain in my shoulders after work outs.
In short, it has been a God send. The added benefit is that by eating a low inflamatory diet and taking fish-oil supplements, I have seen my plaque's shrink and my condition improve.
So I need to get on Pentox, get my VED and cure myself of this dang thing, becuase the progress I got is going to keep going! Does anyone know if a Uro in the Boston area that is pro-Pentox or am I going to have to educate my doctor?
I'd prefer to go right to someone that is on board.
I'll keep you'all posted on progress.
Ted.
can someone help me please - has anyone ever used Pycnogenol? - im thinking about adding this to my supp regime but I would really like someones feedback on this.
thx
Quote from: Ted Williams on October 17, 2009, 03:08:07 PM
Hello Folks,
Been a while since I posted. Since learning about the inflamatory connection of Peyronies Disease, I went on a journey of discovery regarding inflamation. I have also become more healthy then I have ever been in my life. In the gym that I worked out in, I was advised by the coach/nutritionist to start taking Fish Oil supplements to help with recovery from work-outs and to address nagging pain in my shoulders after work outs.
In short, it has been a God send. The added benefit is that by eating a low inflamatory diet and taking fish-oil supplements, I have seen my plaque's shrink and my condition improve.
So I need to get on Pentox, get my VED and cure myself of this dang thing, becuase the progress I got is going to keep going! Does anyone know if a Uro in the Boston area that is pro-Pentox or am I going to have to educate my doctor?
I'd prefer to go right to someone that is on board.
I'll keep you'all posted on progress.
Ted.
Hi Ted,
Could you offer some more details regarding your diet? What foods are you eating and what are you avoiding to keep inflammation at bay? Also how much and what kind of fish oil are you taking? Thanks.
Fred
Hey Fred,
It is basically the "Zone Diet". I am taking Zone fish-oil supplements. The Omega-3 fatty acids protect against inflamation. I am doing my best to get out all of the things that have a high glycemic index. Basically, all the sugar and pasta and stuff. I balance it with lots and lots of fruits and vegetables. Mostly vegetables.
My plaques are not gone, but they have shrunk in size.
I hope that is helpful.
Ted
I take a more intuitive approach than Ted, but in the end very similar with the same goals. If one is concerned about inflammation, sugar and refined carbs are virtually the devil. The typical western refining process removes the most beneficial elements of carbs and jacks their glycemic impact up to the sky. Knocking out inflammation is very much about eating only good carbs, good fats and good proteins. Dr Oz's "You on a Diet" is a more informal approach whereas Zone Diet is a more structured way of doing it, but they are pretty much parallel approaches. And either one can work for anyone willing to make the commitment. They also have the advantage that once you get on them, there is no rebound effect like most diets cause. This has been very helpful to me and I would encourage anyone to pick one of these dietary approaches and go with it. - George
Quote from: Iceman on October 18, 2009, 03:15:32 AM
can someone help me please - has anyone ever used Pycnogenol? - im thinking about adding this to my supp regime but I would really like someones feedback on this.
thx
Do I search for pycnogenol . It' been talked about quite a lot lately. In short, using it alongside l-arginine is likely a good idea.
I follow the Paleolithic way of eating. Which to a certain extent can be summed up as, if it is toxic while raw do not eat it. I cook my food as normal, but only eat things that are edible raw. That means no potato, no wheat.
Paleo diet is a step beyond Zone and if you can manage it, good for you! As far as I can tell, Paleo pretty much conforms to Zone rules, but takes it a step further in terms of eliminating wheat and other gluten containing grains along with modern hybrid meats that are reeking with the wrong kinds of fats and such. I would go there if I absolutely have to, but hope to avoid it with Low Dose Naltrexone which should reinforce the weak points that gluten exploits. The part about avoiding designer meat I actually try to observe. I at least try to make sure it is grassfed and not feedlot. I think there are a lot of nasty health problems associated with feedlot meat, farmed fish and assembly line poultry, all pumped full of antibiotics and growth hormones. Yuch! - George
It's actually quite easy once you get started. Meat is very very satisfying.
When you guys mention the Zone Diet are you talking about the following?
http://www.zonediet.com/
Yup, thats the site. And it looks like Zone diet is getting a whole lot more sophisticated. I looked at the new additions and said "whoa!, what are they doing?". But when you look at the labels and see how they are designing them its pretty cool, almost paleo!. Lots of fascinating and unique supplements here now as well. Very tempting! - George
I checked out the website but to me it seemed pretty commercially oriented and not very user friendly. However, I may be missing something. I watched all 3 videos (Weight Loss, Wellness, and Fitness) and he basically said the excat same thing in all three. Also it says "Dr. Sears explains molecular baking", but he does not really explain what it is in any of the videos. What is molecular baking? Also the nutrition bars and other food products seemed very expensive and also contained quite a bit of sugar (one of the nutrition bars had 18 grams of sugar). The box of nutrition bars is over $35, but I could not find how many bars were contained in a package. There was also a link to a site which purported to contain information regarding the amount of actual fish oil contained in some of the name brand products but this information wasn't in the YouTube videos posted on the site. The speaker did mention that you couldn't really build up your omega 3 count by eating plant sources of omega 3. I've been eating lots of walnuts lately because of the omega 3 content, but according to the videos, you must eat fish to get the proper omega 3. Is it true that eating walnuts and other plant sources of omega 3 won't help? I've been taking one 1200 mg. gel cap fish oil daily and we eat fish a couple of times a week. I take the Nature Made brand fish oil and was hoping to find some information on that brand. Is there a book on the Zone Diet or another website that better explains the concept, or can someone here (Ted or George, etc.) elaborate on it? I'm very interested in the non-inflammatory diet concept. Is the Zone fish oil really superior in quality to others? Can anyone recommend a better brand (I have about a year's supply of the Nature Made, so I hope it's good enough). Thanks.
Fred
Stone age man in Europe ate a lot of large and dangerous wild game. Men of northern European ancestry are more likely to get Peyronie's than people from elsewhere in the world. Perhaps an overheated immune system evolved to quickly heal stone age hunters in Europe after getting pummeled and gored by their quarry. Those who scarred quickly instead of bleeding out or succumbing to infection were able to fight and hunt another day and go on to reproduce. Makes me wonder if that isn't why I'm dealing with this goofy disease.
Unfortunately for fans of the "Paleo" diet, very few stone age plant and animal species survive in their original form today due to climate change, population growth and the extensive cultivation of a handful of crops for human consumption and industrial purposes. A true "stone age" diet is not exactly possible. Furthermore, to get the full benefits of the paleo diet, you need to be outside hunting and running and throwing spears, not ordering bison meat off the internet from a comfy office chair.
Also, wild einkorn wheat and emmer wheat (as well as several other grains) were eaten in stone age times when available. This modern prohibition against wheat does not make sense unless you are allergic to gluten. Forgoing bread and pasta will not cure Peyronie's. Skipping plants in the Solanaceae family (potatoes, tomatoes, etc.) is no miracle cure either. Indeed, stone age man never ate a twinkie, but he would live to what? Thirty-five at best? No thanks.
Moderation, moderation, moderation. In the words of Michael Pollan: "Eat food. Not too much. Mostly plants."
-Skjald
One of the reasons I prefer the Dr Oz intuitive approach to diet is that there are some very good diets out there that do tend to get a little strange in certain ways.
To try to answer some of Fred's questions:
1) Yes the Zone Diet website has become more commercial lately and that is a turnoff. As for the products, I tend to judge them more by the ingredient labels than by the marketing terms like "molecular baking" whatever that is supposed to mean. Looking at the ingredient labels and the nutritional disclosure labels, I found many of the food products rather impressive. On the other hand, "nutrition" bars are, in my opinion, designer junk food. I would stay away from them. All of them. As for pricing, who knows? The guy is trying to make money from his diet plan. Such is life.
2) Omega 3's are omega 3's. It doesn't matter where they come from, they all contribute to your daily total. The way to measure fish oil products is by the total EPA/DHA content. The more the better. With fish oil you are limited by its propensity to promote bleeding and other problems. You can only take so much of it a day. Within that daily allowance you want to pack as much EPA/DHA in as possible. And of course, you want to make sure it is totally free of heavy metal contamination. So read the labels and go from there.
And now for Skjaldborg:
1) Wild game is healthier than domestic meats. Thats the bottom line. Having said that, red meat is still read meat and is still basically inflammatory. This being the case, I would take the Paleo diet's promotion of meat with a grain of salt. I try to limit my consumption of meat, and especially red meat, but given the choice, I will take wild game over the feedlot stuff any day.
2) Your point about couch potato "cave men" is very insightful. A Paleo diet is best implemented alongside a Paleo lifestyle.
3) The obsession with gluten has some problems as well. The reality is that people who are sensitive to gluten already have a metabolic problem going on. I think there are perhaps better ways to deal with this these days than trying to avoid gluten. Ditto with tomatoes. I prefer an approach like Low Dose Naltrexone that addresses the underlying immune system issues rather than trying to dance around the whole food allergy game starting with things like gluten. Gluten only causes a problem because there is something wrong in the first place. Why not just try to solve the something wrong.
4) And yes lifespans in the stone age were not all that impressive and diets that lean toward vegetarian are intrinsically healthier.
And to sum up, NONE of these things is going to instantly cure our Peyronie's situation. I don't think that any of us were meaning to imply that to be the case. At this point, if we can stop its progress, and I think we can, we have achieved a lot. And we need to get this information out to those that are just starting out with Peyronie's so that they can arrest it before it does a lot of damage. On the other hand, if we can push back on it a bit, and I suspect we are getting to the point that we can do that too, that is all the better. - George
Quote from: Skjaldborg on October 19, 2009, 01:09:49 PM
Stone age man in Europe ate a lot of large and dangerous wild game. Men of northern European ancestry are more likely to get Peyronie's than people from elsewhere in the world. Perhaps an overheated immune system evolved to quickly heal stone age hunters in Europe after getting pummeled and gored by their quarry. Those who scarred quickly instead of bleeding out or succumbing to infection were able to fight and hunt another day and go on to reproduce. Makes me wonder if that isn't why I'm dealing with this goofy disease.
Unfortunately for fans of the "Paleo" diet, very few stone age plant and animal species survive in their original form today due to climate change, population growth and the extensive cultivation of a handful of crops for human consumption and industrial purposes. A true "stone age" diet is not exactly possible. Furthermore, to get the full benefits of the paleo diet, you need to be outside hunting and running and throwing spears, not ordering bison meat off the internet from a comfy office chair.
Also, wild einkorn wheat and emmer wheat (as well as several other grains) were eaten in stone age times when available. This modern prohibition against wheat does not make sense unless you are allergic to gluten. Forgoing bread and pasta will not cure Peyronie's. Skipping plants in the Solanaceae family (potatoes, tomatoes, etc.) is no miracle cure either. Indeed, stone age man never ate a twinkie, but he would live to what? Thirty-five at best? No thanks.
Moderation, moderation, moderation. In the words of Michael Pollan: "Eat food. Not too much. Mostly plants."
-Skjald
Skjald:
The introduction of the wheats you mention, coincided with a large drop in the average height of skeletons found. We are only now starting to get back to that height now, but now we are ridden with issues such as tooth decay and poor bone density, none of which were evident in the skeleton evidence found from that period.
Moreover the average age is not relevant as this would have been a product of many diet unrelated factors such as infant mortality, death by misadventure, and that the lack of antibiotics meant that a small scratch on your finger could prove to be fatal if it got infected.
George99 and Skjaldborg - I could not disagree more with the assertion that vegetarian diets are intrinsically healthier. There is a lot of research that shows the majority of hunter gatherers ate a meat based diet, and had done so since and before becoming homo sapiens. We are talking 200k years as homo sapien, and part of the homo genus for far far longer.
Our digestive systems have not had time to adjust to wheat, and most vegetarian diets have a lot of wheat. Moreover there are things a vegetarian diet cannot supply. A mostly meat diet does not have this problem.
I think when we begin to debate meat based diets as opposed to vegetarian diets, we need to cite controlled studies. There are studies out there indicating that there are inherent risks to meat based diets. There are no studies that I know of indicating the opposite. Please correct me if I am wrong on this. Simply trying to say that we have not adapted from our cave man days to vegetables and wheat is really just speculation. Where are the studies that prove it? Where are the studies that show that a diet weighted towards vegetables and grains has a negative impact on health? Many cultures consume far less meat than ours does, where are the studies indicating they have poorer health as a result? Now if you were to say that we haven't adapted to Twinkies and other junk food, that would sound more logical. - George
Well this is just on the inflammation side of things, as that is all I am concerned about.
http://www.nutritiondata.com/facts/beef-products/10526/2 - Grassfed beef - anti-inflammatory
http://www.nutritiondata.com/facts/beef-products/8000/2 - regular beef - anti-inflammatory
http://www.nutritiondata.com/facts/beef-products/7492/2 - beef sirloin - anti - inflammatory
http://www.nutritiondata.com/facts/baked-products/4878/2 - whole wheat bread - inflammatory
http://www.nutritiondata.com/facts/cereal-grains-and-pasta/5707/2 - long grain brown rice - inflammatory
http://www.nutritiondata.com/facts/cereal-grains-and-pasta/5714/2 - long grain white rice - inflammatory
There are a tonne more there. There are some meat products that are mildly inflammatory, but far far more that are anti-inflammatory. The reverse is true for wheat products, even whole grain products. In my personal opinion, a diet that excludes wheat dairy and tubers, (with the exception of sweet potato) is going to be the best diet from an inflammation point of view.
The discussion as to which is healthier on a big picture scale, does not relate to Peyronie's in my opinion, and I'd rather leave that discussion to diet related forums.
OK, I stand corrected on that issue and have modified my previous post accordingly. But I still think we have to be aware of the bigger picture in terms of health. We can't ignore our general health in attempting to address Peyronie's. That would end up being counter productive. And we have to take our cures from research and from what we know about diet from the diets of people in Blue Zones were longevity is common and disease of any kind is rare. Additionally, if you look at the nutritiondata.com site itself, nearly all of the top rated foods in terms of general health are non-meat products. And more of them contain wheat than meat. Even in terms of inflammation, you are comparing mildly inflammatory with mildly anti-inflammatory which sounds somewhat different than simply inflammatory v anti-inflammatory. As I stated earlier, I do think the Paleo diet is interesting, but there are some aspects that I would question in terms of potential to carry them too far. - George
can anyone comment on the effects of this please please as I am about to place an order and want to vary my regime:
7-keto DHEA + pycogenol -
1) has anyone used these
2) has there been any benefit ( reduced pain curvature etc)
3) how does it relate to Peyronies Disease?
Please dont just go over this email and add another question so this get lost PLEASE!!!
I took 7-keto for about a month and a half, though I had to discontinue it due to budget reasons. I was taking it with another supplement (Calcium-D-glucarate? I know that's not right, but off the top of my head that's what I came up with) with the intent of using the two to raise my T levels. I noticed some improvement in my energy levels and libido, but no improvement in plaque size or curvature. I've since decided to boost my T naturally by adding a few dozen reps of leg presses a day - the legs/glutes are the largest T producing groups of muscles, so you can boost your T better than 7-keto can with some bodybulding)
I never used pycogenol, so can't weigh in on that on that one.
Hey guys im reading up from the beginning of this post ;D trying to get all my knowledge down and I just finished reading page 78 and 77. So far my questions are -
"I am taking 1500mg of Bromelain per day, it's a proteolytic enzyme commonly used for tennis elbow and other types of plaque buildup"
1)What exactly is Bromelain? I only saw this one guy post this and no feed back what so ever. Quite odd because it seems like it could be usefull in the fight for peyronies.
2) Do you think acetyl l carnitine is worth taking? I am a 18 year old male and am not quite sure if it would be worth my efforts, simply because I can't afford a lot of oral medication. I just simply don't have the money to be spending on these oral treatments.
3)Lastly I am quite curious about trazadone, it seems to be very useful with night time erections and I am also curious on what it does for depression, it brings up the question about other anti depressents. I currently have a pschiatrist that I am lucky to be able to see for free and he has tried to get me on anti depressents but I have passed on everything he has tried to describe me except for Xanax, simply because I know Xanax is a synthetic drug that won't harm peyronies, and won't harm me in other way as long as I take it only once and a while, and don't get addicted. As for the other anti depressents, I can't recall what they were but I will get a update on that. They were all also addicting and had to many scary side affects, so I ended up not taking any of them. I tried lexapro for a week and then decided it wasn't worth it and discontinued taking them. I would also just like to answer a question I saw on page 77." I have never seen a post from a guy with Peyronies Disease who said he had strong nocturnal erections in 2 years on any forum. If you are out there, could you post?" I am young and you would think that if anyone I would get strong night time erections, however that is not the case. I wake up sometimes with a erection but it will seriously deminish in a matter of seconds. I haven't woke up with a strong erection in a long time, long enough to remember. It's 4:18am over here in Los Angeles, and I took a nap from 8 to 2, I did notice I woke up with a erection but it was pretty pitiful and just went right away. Is this a bad thing or something I should not worry about? Is there even such a thing as a STRONG night time erection? Should I not be worried about not maintaining a erection after I wake up? I have noticed that my erections even with stimulation and masterbation go away pretty easily, which does worry me because again I am young, but I guess that's peyronies disease for ya.
I haven't had much luck with enzymes (like serrapeptase and nattokinase). If you try them, make sure it's on an empty stomach, otherwise it will be wasted for any Peyronies Disease benefit.
ALC has reduced curvature in a small study with Peyronies Disease at 2g/day. That has been posted about here a bit. Hint, use google:
site:www.peyroniesforum.net carnitine
site:www.peyroniesforum.net bromelain
site:www.peyroniesforum.net pycnogenol arginine
For nighttime erections, improved blood flow, and improved NOx production, pycnogenol and arginine are a great nutritional intervention.
s&s
While I have no actual evidence, I feel that most of my (marginal) improvements have come while talking Acetyl-L-Carnitine, in addition to a whole host of other supplements. But I have, occasionally, phased ALC out separately - I feel that while taking it alone won't cure your problems, it's doing something (at least for me) in conjunction with other drugs such as L-Arginine, to help my peyronie's pain/plaque size.
As for trazodone, I have a scrip for it, though I haven't taken it in a long while. It gave me IMMEDIATE results - strong erections the first night of taking it. The kind that would wake me up when I was rolling over in my sleep, because I was that hard that my body would go "okay, you have to mind this thing while you're tossing and turning". I don't remember getting nocturnal erections that hard even before I had peyronie's.
I don't think it helps in any way other than encouraging nightime erections, but if that's your goal... go for it. I've heard that it's fallen out of favor as a depression medication in most instances, but I do know it works on a path different than most SSRI's. Which you want to stay away from unless you really need them, as I hear they can cause sexual dysfunction problems all their own.
Wow! I started something with the "Zone Diet"!
I am just getting back. My thanks to George and Skjaldborg for their explaination.
Regarding fish oil, my attraction to this is because of its anti-inflamatory qualities. I go from personal experience. I actually have a bit of a paleo-lifestyle. After discovering Peyronies, I changed my lifestyle to be more healthy. I work out very intensely in a mixed cardio-weight scenario and I do it frequently. To recover faster, I was advised to take fish oil. I was told it would mitigate the pain I was feeling post work-out. (ice-packs on both shoulders.) It was a miracle. I recover much faster and feel great after the work outs. This sent me on the path of Zone-Anti-Inflamatory eating.
To Fred:
With Fish Oil, the trick is to get the highly purified oil. Fish may contain toxic levels of heavy metals like Mercury and Lead. That is why you should be careful w/your selection. I go with the Zone brand for no other reason then that they advocate highly purified. I am not familiar with your brand of fish-oil.
Regarding the web-site, it is designed to get you to buy his book. It will give you enough information that you need to get more. The first book is "Enter the Zone" I believe. It will give you the information you are looking for. He is out to make a buck, but he is a sincere man... I don't mind profit on a good product.
Regarding the snack bars. I buy them for a little more than a buck each. I am going to start buying them in bulk.
Basically, I use them prior to a work out, 3:30 snack and a late night snack. Of course I have other snacks I eat, but if I don't feel like fruit or I am on the run, a Zone Bar hits the spot. The concept is eating in a way that is like creating a food "dose" to maximize your hormonal levels through-out the day for maximum performance. High sugar levels are not a concern if you are behaving well through out the day. It is the carbo-component of your snack... it is just a lower quality carb...
On the days that I "stay-in-the-zone", I feel great. On the days that I go to Burger King... I feel like crap.
As for the relation to Peyronies... I have several plaques, and they have all remained soft or have softened. Their is mild improvement with life-style change and I think I have set my body up to maximize my response to Pentox, VED and eventually Xiaflex.
I hope this is helpful... great info from everyone on the diet concepts of Paleo and Zone... I am a fan of both.
Ted.
Ted,
Thanks for the info. I figured there was a book expaining this concept, but for some reason didn't see it adverised on the website. I may check it out. BTW, what is "molecular baking"?
Fred
the taste of l-arginine and taurine is one of the most horrible things I have ever tasted.
HELLO TO ALL.
I HAVE NO IDEA WHETHER I AM POSTING IN THE CORRECT PLACE, AS I AM VERY CONFUSED REGARDING "OUR" WEBSITE". I HAVE READ SO MANY POSTS IN THE PAST YEAR AND A HALF, THAT I JUST DON'T KNOW WHERE TO START! LET ME BEGIN BY THANKING EACH AND EVERY ONE OF YOU ON THIS FORUM, AS YOUR WORDS HAVE CARRIED ME THROUGH SOME DARK TIMES, AND OCCASIONALLY MADE ME LAUGH. MOST TIMES I LEACH A BIT OF HOPE FROM YOU ALL. A SPECIAL THANKS TO OLD MAN, TIM, ANGUS, LIAM, (HOPE I HAVEN'T FORGOTTEN SOMEONE), FOR CONTINUALLY RUNNING AN INFORMATIVE AND DISCIPLINED SITE.
BY WAY OF INTRODUCTION, I AM A 49 Y/O WHITE MALE, AND HAVE SUFFERED THE EFFECTS OF PEYRONIE'S SINCE EARLY SUMMER 2008. IT BEGAN WITH A DOWNWARD CURVE TO APPROX. 50 DEGREES.
PAIN WAS VENTRAL AT THAT TIME, ALL ALONG THE SHAFT. AFTER READING ABOUT THE FASTSIZE TRACTION DEVICE, I ORDERED ONE. I, LIKE MANY, FOUND IT VERY DIFFICULT TO WEAR THIS THING MORE THAN 2 HOURS A DAY, AND SUBSEQUENTLY STOPPED AFTER ABOUT A MONTH. AFTER A PERIOD OF APPROX. 4-5 MONTHS AFTER D/C'ING THE FASTSIZE, THE PAIN HAD ESSENTIALLY GONE AWAY, REPLACE BE A "TIGHT" FEELING BENEATH. SHORTLY AFTER THIS, I NOTICED A "NODULE" FOR LACK OF A BETTER TERM, HAD FORMED ON THE LEFT SIDE OF MY MEMBER, RIGHT AT THE BASE, AND SHORTLY AFTER THAT, A HEAVY "DENT" APPEARED AT THIS SITE. THIS BENT ME TO THE LEFT AND DOWNWARD. NOT LONG AFTER, A SMALLER NODULE APPEARED ON THE RIGHT SIDE, AND RECENTLY, ONE ON TOP... ALL AT THE BASE OF THE SHAFT. IT SEEMS NOTHING HAS HAPPENED SINCE THEN, THANK GOD, AND I THINK I AM NOW STABLE (KNOCK ON WOOD)(INSERT JOKE HERE)...IN MY TEENS, I MEASURED JUST OVER 7", BUT AM NOW AT 5". NASTY BUGGAR OF A DISEASE! AS I AM IN THE HEALTH CARE FIELD, I KNEW ALL ALONG WHAT I HAD, AND EDUCATED MYSELF, MOSTLY ON THIS BOARD. GOD BLESS YOU ALL, AS TO WHAT COULD BE DONE. I HAVE WAITED PATIENTLY FOR A YEAR AND A HALF TO BE ONE OF THE APPROX. 33% WHO RESOLVE. NO LUCK... I HAVE THEREFORE APPROACHED MY FAMILY DOCTOR, JUST THIS MORNING, ABOUT THE PROBLEM. HE AGREED TO PRESCRIBE TRENTAL, AND OFFERED TO REFER ME TO A UROLOGIST 50 MILES AWAY. I HAVE NO IDEA IF THIS DOCTOR HAS ANY KNOWLEDGE OF PEYRONIE'S TREATMENT OR NOT. I DECLINED. MY REASONING: HE CAN TELL ME I HAVE PEYRONIE'S, WHICH I ALREADY KNOW. HE COULD DO SURGERY, WHICH I WON'T GO FOR AT THIS TIME. HE COULD DO "INJECTIONS", WHICH I WON'T ALLOW BASED ON ADVICE OF MAJORITY ON THIS BOARD. IF THERE WAS ANOTHER "MAGIC BULLET" OUT THERE, I'M RELETIVELY CERTAIN ONE OF YOU WOULD HAVE PUT IT OUT IN 10 INCH HEADLINES! IN SHORT, I'M MUCH MORE COMFORTABLE WITH MY DOCTOR FOR NOW, AND HE'S SHOWN A WILLINGNESS TO WORK WITH ME. I HAVE TODAY, STARTED A REGIMEN OF TRENTAL 400mg 3 TIMES A DAY, ALONG WITH L-ARGININE 1000mg 2 TIMES A DAY, VITAMIN E 400 UNITS 3 TIMES A DAY, AND SAW PALMETTO FOR A SLIGHTLY ENLARGED PROSTATE. I PLAN TO CONSUME 8 OZ OF POM WONDERFUL 2 TIMES A DAY, AS IT IS REPORTED TO "OPEN" CLOGGED ARTERIES, AND CAN HENCE IMPROVE SEXUAL FUNCTION. I ALSO WILL ORDER THE VITALITY FROM FITZ BASED ALMOST SOLELY ON ADVICE FROM "OLD MAN".
I HAVE SO MUCH TO SAY, BUT I'LL TRY TO KEEP FUTURE POSTS SHORTER.:)
I'M NOT AT NEARLY THE EDUCATION LEVEL AS SOME OF YOU, ESPECIALLY IN THE AREA OF CELLULAR BIOLOGY, SO BEAR WITH ME, BUT I MAY HAVE AT LEAST A FEW THINGS TO ADD TO YOUR DISCUSSIONS. AND IF I POST IN THE WRONG PLACE, PLEASE CORRECT ME, AS I'M NOT EXACTLY "MR. COMPUTER".:)
I LOOK FOREWARD TO GETTING TO KNOW EACH OF YOU, AND BEING A FAIRLY FREQUENT POSTER.
WOULD ANYONE LIKE TO COMMENT ON MY SELF-MEDICATION REGIMEN?
Quote from: PTMAN on October 31, 2009, 01:16:43 AM
HE COULD DO "INJECTIONS", WHICH I WON'T ALLOW BASED ON ADVICE OF MAJORITY ON THIS BOARD. IF THERE
LOOK FOREWARD TO GETTING TO KNOW EACH OF YOU, AND BEING A FAIRLY FREQUENT POSTER.
WOULD ANYONE LIKE TO COMMENT ON MY SELF-MEDICATION REGIMEN?
PTMAN,
Unfortunately....... welcome to the group. Clearly you have done your homework and are off to a good start. I think your med plan at the moment is a good one. Just don't expect any overnight results as it takes time.
Regrading the injections.... I'm going to to out on a limb here. I don't agree that the "majority" on this board advise against the injections. I do know that Old Man and Jackp did have bad experiences with injections and I respect their advice and opinions. And many others on this forum will say they don't recommend the injections based on this and the fact that many of us don't want anything jabbed into our penis and will therefore also recommend against it. But keep in mind.... there are those who have had the injections although with limited success, but with no side effects. I for one had them, and although they did not help, there were no side effects. And there have been some recent posts from people who had the injections and stated they helped them. I only say all this to simple say not to totally rule out injections as a possibility. I go to Dr. Levine and it is usually part of his standard treatment approach to at least try a few of them. He has many patients and has published studied regarding this approach. The injections have there best chance of helping during the first 12 months of Peyronies Disease detection druing the active phase. Beyond this I think there is little chance of success from VI's.
Which leads me to my next thought....... It is great you have found a doctor you can work with. That in itself is half the battle. I don't know where you live but would encourage you to seek out a male functional specialist who also specializes TREATMENT of Peyronies Disease. Many doctors can diagnose it..... few are specialists in treating it.
And finally..... welcome to the group. Looking forward to future posts and sharing.
Les Willis
THANKS, WILLIS!
GOOD TO MEET YOU (KIND OF)...
ONE OF THE MEDICINES IS REALLY MESSING WITH MY HEAD. KINDA DIZZY AND "DRUGGED" FEELING, NOT IN A GOOD WAY! :)
HAVE NOTICED A DIFFERENCE SINCE MY FIRST DOSE IN THAT THE MEMBER FEELS SLIGHTLY WARM... WONDERED IF ANYONE ELSE HAS NOTICED THIS. ALSO, HAD SOFT "WOOD" ALL NIGHT LONG, WITH REALLY RESTLESS SLEEP. PRETTY TIRED TODAY. WILL I ACCLIMATE TO THIS DRUG, AS I ASSUME IT'S THE TRENTAL?
I HAVEN'T RULED OUT ANY TREATMENT OPTION COMPLETELY, BUT AS I AM ABLE TO "DO BUSINESS" AT THIS TIME, I HATE TO UPSET THE APPLECART. MY HEART GOES OUT TO THOSE OF YOU WHO ARE FAR MORE DAMAGED THAN I.
THE ONLY COMPLAINTS I REALLY HAVE IS THAT IT APPEARS SOMEONE HAS TAKEN A RATHER LARGE BITE OUT OF MY MEMBER AT THE BASE (AGAIN, INSERT JOKE HERE) AND I HAVE LOST APPROX. 2" OF LENGTH. BUT FROM THE THINGS I READ HERE, I COUNT MYSELF FORTUNATE.
ONE QUICK QUESTION: I HAVE SEEN SEVERAL POSTS REGARDING ANYONE WHO HAS HAD SUCCESS WITH ELIMINATION OR LESSENING OF THE "DENT". I HAVE SEEN FEW IF ANY REPLY POSTS AS TO THIS QUESTION. LEADS ME TO THINK THERE IS LITTLE HOPE FOR THIS PROBLEM SHORT OF INJECTIONS OR SURGERY? CAN ANYONE CLAIM SUCCESS WITH THIS PROBLEM?
TO ALL:
BY WAY OF TRYING TO ADD SOMETHING, I THOUGHT I'D MENTION AN OBSERVATION OF MINE OVER THE PAST FEW MONTHS... I TAKE IT FROM MANY POSTS THAT NIGHTIME ERECTIONS ARE IN SOME WAY BENEFICIAL TO PEYRONIE'S SUFFERERS, ALTHOUGH I'M NOT SURE EXACTLY WHY. (PERHAPS THE STRETCHING OF THE TISSUES?)
I NOTICED MONTHS AGO, PRIOR TO STARTING THE DRUGS YESTERDAY, BUT AFTER THE DISEASE HAD SET IN, THAT AT BEDTIME, IF I RAISED MY MEMBER TO THE "UP" POSITION AND LET MY BREIFS HOLD IT THERE ALL NIGHT, I WOULD HAVE HAVE SEMI RIGID WOOD MOST OF THE NIGHT, AND IN THE MORNING.
THIS DIDN'T WORK EVERY NIGHT, BUT MY ESTIMATE IS APPROX. 80% OF THE TIME... DON'T KNOW WHY.
I TESTED THE THEORY MANY TIMES. UP ONE NIGHT, DOWN THE NEXT. WOOD IN THE DOWN POSITION WAS ABOUT 20% OF THE TIME. I KNOW THIS IS A REALLY TRIVIAL THING AND IT MAY HAVE ALREADY BEEN COVERED, BUT THOUGHT I'D MENTION IT... MAY HELP SOMEONE :).
CAN SOMEONE HELP... I READ A WHOLE THREAD A DAY AGO REGARDING USE OF "TIGER BALM" AND ULTRA BENGAY. AS I AM NEW TO THE BOARD, I CAN'T FIND IT AGAIN TO SAVE MY LIFE! WHERE DO I FIND IT, AS I HAVE BOUGHT SOME...
Pitman
After reading through your post this morning I would strongly advise you going to the VED board and start the VED routine ASAP.
Why, for your penile health, it will also help restore lost length. It will keep your penis healthy in case you need surgery later on.
You can read my success with the VED at My History, there is a link at the bottom of this post.
Jackp
PTMAN, George wote about trying TigerBalm (I recall - perhaps in error) and he thought it helps. But, if you read on, he also thought it was too hard on him and ultimately was a no-go.
Go to the "Child Boards" or the introduction to topics and get caught up before you go charging off in the probably wrong direction!
Tim
HELLO, JACKP!
REST ASSURED THAT I FULLY INTEND TO BEGIN THE VED THERAPY, AND CONVERSE WITH YOURSELF, OLD MAN AND OTHERS. JUST GOTTA MAKE ONE MORE PAYMENT ON THAT PESKY CREDIT CARD.:) HOPFULLY WILL BE ORDERING WITHIN THE NEXT 2-3 DAYS. I PLAN TO TAKE OLD MAN'S ADVICE AND ORDER THE FITZZ 3 CYLINDER MODEL. I FEEL I HAVE TO TAKE ANY REASONABLE ACTION I HAVE AVAILABLE TO IMROVE MY CONDITION, IF ONLY SO I CAN LOOK BACK AND SAY "I DID EVERYTHING I COULD".
I WANT NO REGRETS...
I READ YOUR ENTIRE PROFILE. MY GOD MAN, YOU'VE BEEN DOWN SOME DUSTY ROADS!!! (SORRY, MY TEXAS LINGO WILL COME OUT SOMETIMES). I THOUGHT MY LUCK WAS THE WORLDS WORST, BUT YOU'VE GOT ME BLOWN OUT OF THE WATER!!!
I'M CURIOUS THOUGH... ARE YOU STILL DOING OR TAKING ANY TREATMENTS FOR THE PEYRONIE'S, OR HAS THE IMPLANT RENDERED THAT UNNESSESSARY?
AGAIN, THANKS FOR YOUR POSTS!
HI TIM...
THANKS FOR GETTING BACK TO ME AND FOR ALL YOUR POSTS. I'VE BEEN READING THEM FOR MONTHS, AND YOU GUYS HAVE BEEN MORE HELP THAN YOU KNOW!!! I'M SO GLAD SOME COMPUTER LITERATE PERSON (UNLIKE ME) STARTED THIS FORUM. I JUST SHUDDER TO THINK WHERE I WOULD BE WITHOUT THE INFORMATION YOU HAVE ACCUMULATED!!! PERHAPS WHERE JACKP IS WITH ALL HIS COMPLICATIONS...(SHUDDER) ANYWAYS, THANKS A LOT!
ANYWAYS, WITH REGARDS TO THE TIGER BALM... I READ THE ENTIRE THREAD VERY CAREFULLY, AND WANTED TO READ IT AGAIN BEFORE I STARTED WITH IT. IF I RECALL, HE HAD A DRAMATIC REDUCTION OF THE "NODULES" WITH THE BALM INITIALLY, ALONG WITH SOME SEVERE "BURNING", BUT LITTLE CHANGE IN "DENT". MY LINE OF THOUGHT WAS THAT IF IT HELPED THE NODULES DIMINISH IN SIZE, OR ELIMINATED THEM ALTOGETHER, PERHAPS A MAN COULD SLOW THE PROGRESS BY USING LESS/BEING MORE PRECISE IN PLACEMENT, ETC. JUST THOUGHT IT TO BE TOO EFFECTIVE TO JUST DROP THE IDEA ALTOGETHER. I AM ABOUT TO ORDER THE FITZZ 3 CYLINDER UNIT AND THOUGHT IF THE NODULES WERE ELIMINATED OR REDUCED BY THE TIME I GET THE UNIT / START USING IT, THIS MIGHT HELP THE VED EFFICACY. (METHOD TO THE MADNESS? :) THANKS PTMAN
O.K., TIM...
I GUESS I'M A HOMER, BUT I JUST DON'T KNOW.
I CAN'T SEE ANYTHING ON THE "HOMEPAGE" THAT IS TITLED "CHILDS PAGE" OR "INTRODUCTION TO TOPICS". LIKE I SAID, NOT MR. COMPUTER MAN:)
Pitman
If I can do it you can too. It just takes a never - ever give up attitude. Of course my wife was a lot of support and never complained.
With my implant I have a straight hard erection. The only thing I do now is exercise the implant. I pump it up at least twice a day for five minutes. ::)
Jackp
PT, The deal on the TigerBalm is that, yes, initially it worked for me, but after a few days of it, it is so irritating to the skin that you can't go on and everything just regresses to where it was before. There are just a huge number of treatments listed on this site that some of us have found helpful. There are others that seem promising, but no one here is sure as to their effectiveness at this point.
---BUT---
I STRONGLY recommend that to start out you go for those treatments that are KNOWN to work. DON'T WASTE TIME on the other stuff. The things that work are:
1) VED as recommended to you by Jack. Not much I can say about the VED. Almost everyone here who has tried it swears by it. The only thing I know of that give faster results is number 3 in my list below.
2) Pentox which a number of us would also recommend to you. Pentox will really reduce nodules and pain over time. Pentox will most likely stop the Peyronie's from progressing and may even push it back a bit. It is inexpensive, few side effects, low risk and reasonably easy to take. Pentox requires a prescription which takes some effort. Pentox is what I am mainly relying on for control of my Peyronie's. It works much better than TigerBalm.
3) If you want really fast and certain results, there is only one way to achieve that at this point and that is via surgery.
Once you take action with one or more of the above items, THEN you can begin to look at other approaches. - George
PTMAN:
Correction to Tims post about going to the child boards. That heading is no longer used on the forum. The forum was reformatted several months and we now have a home page that lists all of the "boards" that are in the forum. Each board has topics or threads listed in them.
So, just go to the home page which comes up as you log in and scroll down the page until you see the board that you want to access. Click on that link and it will bring up the sub topic items you want to use, etc. You then click on and open those you might need.
As Tim says, just scroll around on any and all of the boards that look interesting and relevant to your case.
Good luck and let us know if you have any further questions.
Old Man
Hope this isn't inappropriate, but I'd like to address several members with one post.
Old Man... thanks for clearing that up... I kinda figured it out. I can't run a "search" for Tiger Balm on the home page, or I only come up with my own posts. Gotta be on the right section.
Jackp...you sound a lot like me. At times in my life people say I'm like a bulldog when i get an idea in my head -just can't let it go till I see it through. Also been said that I'm "like a dog with a bone".
I'm left to believe I must be some sort of dog. :)
Also, I believe you said in your profile (correct me if i'm mistaken) that you once had nodules. I was just wondering if you still have them, or they were removed, went away over time, etc.?
George... Homework done. Started Pentox yesterday, and about ready to order ved. Have already touched base with Old Man regarding this. We must be similar, you and I, for I too tend to think outside the box. But on your suggestion, I believe I'll take the Balm back. Besides, It's for Tigers, I'm a dog. :)
Thanks to all for replying!!! PTMAN
PTMAN - Could you cut it out with the caps? No need to have everything typed in capital letters, makes it harder to read also.
Already handled, skunkworks :)
Newbie here and would like to know whats the best route to go in terms of Oral Treatments?
From the looks of things on here L-Carnitine, Arginine, Bromelain?
PT
My peyronies started in 1995. The only oral treatments I received at the time was 400IU of Vitiaman E three times a day and Potaba. I stopped the Potaba in about a year but stayed on 400IU of vitamin E until my heart doctor took me off with my first stent in 2006.
The only signs of peyronies I have now is the scar on top of my penis and loss of length. Regardless of what your hear other wise the AMS 700 LGX will straighten the peyronies curve if done by a skilled surgeon. www.amslgx.com.
With the help of the VED protocol and now my implant I have been able to restore my length back to 90% of my pre peyronies length. My girth has been fully restored and now a healthy 6.28".
Any time I or anyone else on this forum can be of assistance just let us know.
Jackp
Philip:
As a newby myself, let me say welcome to the forum.
From reading the posts for some time, I believe the consensus to be split between arginine and carnitine, with some believing one is better, others the other. I have read good things about both, but can unfortunately give you no personal experience, as I am new as well, and just started treatment.
I will paste my new regimen below, compiled from advice from those on this board, and research of my own. It was at least "approved of" by lwillis, who's a longtime member and one I would trust.
Again, welcome to "We Band of Bent Brothers"!! :)
I HAVE TODAY, STARTED A REGIMEN OF TRENTAL 400mg 3 TIMES A DAY, ALONG WITH L-ARGININE 1000mg 2 TIMES A DAY, VITAMIN E 400 UNITS 3 TIMES A DAY, AND SAW PALMETTO FOR A SLIGHTLY ENLARGED PROSTATE. I PLAN TO CONSUME 8 OZ OF POM WONDERFUL 2 TIMES A DAY, AS IT IS REPORTED TO "OPEN" CLOGGED ARTERIES, AND CAN HENCE IMPROVE SEXUAL FUNCTION. I ALSO WILL ORDER THE VITALITY FROM FITZ BASED ALMOST SOLELY ON ADVICE FROM "OLD MAN".
Footnote: You might also want to seek out Old Man on the board, as he may have further recommendations for you!
The recommended drugs are referred to as the PAV cocktail. You can search on this. It is a combination of several drugs including:
1. P -Pentoxifyline (Pentox, Trental)
2. A - L'Arginine, Carnitine, etc.
3. V - Viagra, Ciallis, Levitra
Vitamin E is also encouraged along with watching your vitamin D levels.
No one drug works on you would see it in capital letters on this forum somewhere and some drug company trying to market the magic Peyronies Disease elixer.
Quote from: PTMAN on November 01, 2009, 10:36:01 AMVITAMIN E 400 UNITS 3 TIMES A DAY
That is a very large dose of Vitamin E, and could be damaging to your health. Everything I have read says the dosage should be kept under 400 if you are going to be taking it long term.
skunkworks
That was instructions from my doctor. The reason my heart doctor took me off was he put me on Plavix.
Do you have any published information by doctors to back up your statement?
Jackp
Actually my doctor instructed me to take 800IU of Vitamin E per day indefinitely. As with Vitamin D, there is a lot of disagreement among doctors as to what constitutes an excessive dose. I would certainly be interested in seeing any research that indicates that large doses of natural vitamin E are significantly hazardous to heart health. For several months I was taking several thousand IU per day. I stopped because one has to be very careful about potential bleeding problems when doing so and also because I found that high dosages are no better than smaller amounts in terms of Peyronie's benefits, at least not for me. - George
skunkworks,
I read up on both this site and Googled it at length before deciding on 1200 iu/day.
When I could find a listed dosage for Peyronies, they usually mentioned this amount.
I did read where excessive use could cause problems, though. This was usually mentioned with dosage several hundred iu/day higher. I came away realizing that there is no accepted dosage for peyronies, only a range considered to be bordering on "too high". I am well below this level...
That's my rational. If you find or know something that I don't, please let me know!
You've got me re-thinking now, which may not be such a bad idea.
Thanks for looking out for me!!
P.T.
can anyone please tell me the best vit e to get from iherb as im about to place an order.
thx
Google returns many results on this, but if doctors are still recommending high doses then there must be enough of a grey area in the studies to justify the use of higher than 400iu doses.
I personally also use a higher dose, but thought he should be aware of the potential risks. It seems he has done the research already though, which is commendable.
I chose my 3 x 500iu dose based on this study:
http://www.ncbi.nlm.nih.gov/pubmed/10098440
Iceman,
I recently did some study on Vitamen E types. Admittedly, I don't understand what I read, but decided on some called "Ester-E" because it had at least 2 if not 3 different "dl" types.
Sadly, I can no longer find it at the local Wally-World! Couldn't tell it worked any better than the "Spring Valley" brand they now sell, as I have taken one, then the other, for some time, and had no appreciable success. Wish I could be of more help...
Dear Reader,
Vitamin E, also known as alpha-tocopherol, is an antioxidant in the form of a fat-soluble vitamin. Your body's supply of fat-soluble vitamins, which also include vitamins A, D and K, accumulate and are stored in the liver and adipose (fat) and muscle tissues. In contrast, water-soluble vitamins such as vitamin C and the B vitamins are not stored but excreted regularly from the body. This means that you do not have to replenish your intake of fat-soluble vitamins as often as you do your water-soluble vitamins. Fat-soluble vitamins are also more easily absorbed by the body when consumed with some fat (the property that gives rise to the term 'fat soluble'). As with other vitamins, nutrients and minerals, it is often best to get your vitamin E by eating a varied and healthy diet rather than using supplements unless your doctor or other medical care provider specifically recommends otherwise.
The U.S. Recommended Dietary Allowance (RDA) for vitamin E in individuals 14 years or older is 22.5 IU (15mg). If a woman is breastfeeding, that requirement increases to 28.5 IU (19mg). There is no need to exceed the RDA level of intake unless you have been diagnosed with a vitamin E deficiency or another condition that would put you at risk for a deficiency. With those numbers in mind you may find that taking 1000 IU, or even 400 IU, of vitamin E daily over the long term can do some damage to your wallet (and possibly your body) without much benefit. Don't forget that the pills are not the only source of vitamin E going into your body; you will also be getting vitamin E through foods such as:
almonds, peanuts, filberts
wheat germ, cereal grains
turnip greens, broccoli, spinach, leafy greens
peaches, strawberries
egg yolks
milk fat
liver
sunflower and safflower oils
If you have been taking vitamin E supplements, you don't need to worry just yet; it does not appear to be harmful in large doses of up to 1500 IU per day over a short period of time. However, recent studies have shown that taking supplements of over 400 IU over the long term is associated with an increased risk of mortality (from all causes). The reason for this association is not clear and some of these studies have been criticized due to flaws in their designs, such as small sample size and use of subjects who were already sick. However, you might want to consider your reasons for taking vitamin E supplements before adding them to your routine over an extended period of time.
One of the potential dangers of long-term use is that high levels of vitamin E may increase one's risk of prolonged bleeding, especially for those who suffer from a vitamin K deficiency or those taking anti-coagulants (blood thinning agents) such as warfarin, heparin or aspirin. The body needs vitamin K in order to form blood clots. Taking high doses of vitamin E can greatly increase one's vitamin K requirement, which, for someone who already has a vitamin K deficiency, could put her/him at a greater risk for hemorrhaging. Vitamin E has not been found to produce blood-clotting abnormalities in individuals who are not vitamin K deficient.
Finally, as with any dietary supplement, the amount of vitamin E in each pill can vary greatly because the Food and Drug Administration (FDA) does not regulate nutritional supplements. That is, your 400 IU supplement may contain much more, or much less, vitamin E than what is listed on the label. After reading all of this, if you feel a vitamin E supplement is a good choice for you, it would be wise to speak with your health care provider about how much to take and how to find a reliable supplement brand.
Alice
Source- http://www.goaskalice.columbia.edu/0962.html
I've read and heard the same as skunkworks, not to go above 400IU per day for a long period of time. There is no study that shows vitamin E works for peyronies, nor have I ever heard anyone in the last 10 years tell me it helped them. Compare that to all the people who have said pentox helped them and Dr. Lue's studies, and its a no brainer...
Quote from: ComeBacKid on November 01, 2009, 11:14:31 PM
I've read and heard the same as skunkworks, not to go above 400IU per day for a long period of time. There is no study that shows vitamin E works for peyronies, nor have I ever heard anyone in the last 10 years tell me it helped them. Compare that to all the people who have said pentox helped them and Dr. Lue's studies, and its a no brainer...
If I had it to do over again, I would not be fiddling around with Vitamin E and supplements. I would go straight for the Pentox. The ONLY exception in terms of supplements for me would be vitamin D, and in that case I would make it a priority to get tested and take Vitamin D3 accordingly. But Vitamin D is NOT a true vitamin. It is rather an essential naturally occurring hormone. When it is insufficient the damage is far more nasty and widespread than vitamin deficiencies. And of course another strategy that is proven is the VED. So as we old timers around here can afford to debate the merits and intricacies of all sorts of arcane approaches to treating Peyronie's, it is VERY IMPORTANT that new comers start out with things that are known to work from the get go. If you are a newcomer, and especially if you are newly diagnosed, you will NEVER have this opportunity again. Doctors will advise you to "watch and wait". Voices from all directions will advise you to try this and try that. Other voices will try to convince you to pay big money for an elusive but certain "cure". But my advice as one who has seen it all is to get on something that WORKS and do it quickly. If your doctor won't prescribe it for you, find one who will. But don't fiddle around with stuff like Vitamin E, not even with premium forms of Vitamin E. Instead, don't waste any more time and get yourself on Pentox while there is still possibility of stopping Peyronie's in its early stages. - George
Regarding vitamin E, I asked Dr. Lue point blank if there were any other anti-fibrotic, pro-healing medications at all in the world that I should be taking in addition to pentox, side effects be damned. He said no, pentox is the one. This guy would know.
Vitamin E is another in a long line of medications that are generally harmless but of dubious efficacy that we all take at first because most uro's have vaguely heard something or other about vitamin E being good for Peyronie's and vitamin E "won't hurt." It's part of the throw-everything-at-the-wall-and-hope-something- sticks-mentality that occurs when there's no real cure.
I stopped taking vitamin E in month 3 or 4 because I read that it is a blood thinner and shouldn't be taken in conjunction with other blood thinners-like pentox.
-Skjald
Vitamin E will harden your arteries if taken at high levels over 400IU for a long period of time. This is what I've read and heard.
CBK
Any medical literature to back up that statement?
Jackp
just ordered pycnogenol - anyone had anything to do with this or any positive results?????
Thx
Quote from: George999 on November 02, 2009, 10:57:04 AM
If I had it to do over again, I would not be fiddling around with Vitamin E and supplements. I would go straight for the Pentox. George
This seems to suggest that the two are mutually exclusive. I agree that pentox is the first and foremost treatment we have available.
However this study suggests (to me) that there could well be a benefit to taking both at the same time.
Striking regression of subcutaneous fibrosis induced by high doses of gamma rays using a combination of pentoxifylline and alpha-tocopherol: an experimental study.http://www.ncbi.nlm.nih.gov/pubmed/10098440 (http://www.ncbi.nlm.nih.gov/pubmed/10098440)
Sorry, I was mistakened, it is smoking that causes hardened arteries over time. The only thing I've read is what i posted below, that vitamin E can be unhealthy in large doses, more studies are needed on this. After 6 years of reading postings and learning new contradictory information, it will make your head spin! ::)
Although I will say I haven't heard one person tell me vitamin E helped them, it wouldn't hurt to take it, but I personally wouldn't go over 400IU. If I did take it for a peyronies treatment I would only do it for a few months, maybe two and then quit. I have read not to take high dosages though cause it is unhealthy, I thought it was cause it hardened your arteries.
does anyone think this is interesting:
07/15/2009
Study Demonstrates the Anti-inflammatory Properties of Pycnogenol® on Inflammatory Mediators COX-2 and 5-LOX
Pycnogenol® found to inhibit pain and inflammation causing enzymes
GENEVA, Switzerland – A recent study published in "International Immunopharmacology," reveals why Pycnogenol® (pic-noj-en-all), an antioxidant plant extract from the bark of the French maritime pine tree, is effective for reducing inflammation and soothing pain associated with various health problems. Dr. Raffaella Canali of the National Research Institute on Food and Nutrition in Rome, Italy, found that Pycnogenol® inhibits the generation of COX-2 and 5-LOX, two naturally occurring enzymes associated with a host of inflammatory conditions.
"This study reveals that Pycnogenol can actually decrease pain and reduce inflammatory conditions, as has been previously reported, by shutting down the production of specific enzymes involved with inflammation," said Dr. Canali.
Inflammation is a tightly controlled, concerted action of immune cells fighting infections, irritations and injuries. When inflammation goes out of control it may target the body's own tissue such as in arthritis or asthma. The worst known cases are the auto-immune diseases.
The study investigated healthy volunteers ranging from ages 35-50, who consumed Pycnogenol® tablets (150 mg) for five consecutive days in the morning before breakfast. Blood was drawn before and after supplementation to investigate how immune cells respond towards pro-inflammatory stimuli. The behavior of specific white blood cells (leukocytes) for generating a repertoire of enzymes in inflammatory condition was tested by real-time PCR. The gene expression of enzymes COX-2, 5-LOX, FLAP and COX-1 were monitored and the products these enzymes generate, prostaglandins and leukotrienes, were quantified.
A baseline study revealed that the volunteers' immune cells rapidly initiated production of COX-2, 5-LOX and FLAP enzymes upon pro-inflammatory stimulation. Taking Pycnogenol® almost entirely subdued COX-2, 5-LOX and FLAP induction in the immune cells of volunteers. Control studies showed that Pycnogenol® did not have an effect on generation of the COX-1 enzyme, thus the potential for typical NSAID side effects is defied. While Pycnogenol® is not a COX-2-specific inhibitor; it blocks the COX-2 enzyme production during inflammation only. There are COX-2 enzymes not involved in inflammation in other organs such as the kidneys, where it has important physiologic functions.
"Standard NSAID medications reduce the production of prostaglandins by COX enzymes for lowering the pain," explains Dr. Canali. "In contrast, Pycnogenol® turns to the root of the problem, completely stopping the production of COX-2 in inflammation. Thus far, Pycnogenol® seems to be a unique tool for modulating inflammatory processes."
These pharmacologic findings are consistent with past clinical trials of Pycnogenol® that showed significantly lowered leukotriene levels in asthmatic patients, a condition originating from 5-LOX. Three recent clinical trials also showed pain relief and a reduced need for pain medication in arthritis patients after taking Pycnogenol®, results that are linked to COX-2 inhibition. One arthritis study showed a significant reduction of inflammatory marker C-reactive protein. Pycnogenol® has been shown to inhibit inflammation in several dysmenorrhoea studies and also a reduction in skin inflammation related to sunburn and acne.
About Pycnogenol®
Pycnogenol® is a natural plant extract originating from the bark of the maritime pine that grows along the coast of southwest France and is found to contain a unique combination of procyanidins, bioflavonoids and organic acids, which offer extensive natural health benefits. The extract has been widely studied for the past 40 years and has more than 220 published studies and review articles ensuring safety and efficacy as an ingredient. Today, Pycnogenol® is available in more than 700 dietary supplements, multi-vitamins and health products worldwide. For more information, visit www.pycnogenol.com.
Horphag Research Ltd. is the exclusive worldwide supplier of Pycnogenol® (pic-noj-en-all) French maritime pine bark extract. Pycnogenol® is a registered trademark of Horphag Research Ltd.; Guernsey and its applications are protected by U.S. patents #5,720,956 / #6,372,266 and other international patents. Horphag Research Ltd. Is the recipient of the 2008 Frost & Sullivan North American Health Ingredients Excellence in Research Award. For more information about Pycnogenol® visit our Web site at www.pycnogenol.com
CBK
I agree with the smoking 100%.
I can attest to the fact that 400IU of Vitiamin E 3 times a day helped me. It helped keep the blood flow to my penis.
I attribute a lot of my blood flow problems to the testosterone gel's I was on for years. Even though I complained to my urologist at the time that was all he recommended. Every time I went to my arthritis doctor he would complain of my blood being too thick.
After I changed urologist and started the testosterone shots my blood level returned to normal. I also think the thick blood was a factor in my heart problems when I had to have stents. All this happend within a few months.
My heart doctor said the vitamin E I was taking was not a problem but after the stents he took me off it and put me on Plavix.
I do know that blood thinners help penile function and feelings in men with cornary artery disease. While I was on warfarin for 3 months I had a lot better feelings in my penis.
Just me take.
Jackp
Iceman - there is a thread titled l-arginine at bedtime, give it a read. You will find a handful of people using l-arginine and Pycnogenol together. Taken around dinnertime people claim to have very good nocturnal erections. I will be trying this combo out in a week or so once my Pycnogenol comes in.
I will first try 500mg of l-arg and 60mg of Pycnogenol and see what kind of results it gives. Then I may step up the l-arg to 1g and keep Pycnogenol at 60mg.
Quote from: skunkworks on November 02, 2009, 11:26:48 PM
Quote from: George999 on November 02, 2009, 10:57:04 AM
If I had it to do over again, I would not be fiddling around with Vitamin E and supplements. I would go straight for the Pentox. George
This seems to suggest that the two are mutually exclusive. I agree that pentox is the first and foremost treatment we have available.
However this study suggests (to me) that there could well be a benefit to taking both at the same time.
Striking regression of subcutaneous fibrosis induced by high doses of gamma rays using a combination of pentoxifylline and alpha-tocopherol: an experimental study.
http://www.ncbi.nlm.nih.gov/pubmed/10098440 (http://www.ncbi.nlm.nih.gov/pubmed/10098440)
My comment was directed toward NEWBIES. The complete post, I hope, would make that clear. Once ON PENTOX. other options are open as well, but fiddling with them without Pentox is asking for a downhill slide. - George
Jackp,
Your the first who has told me vitamin E helped you, I'm glad it did! I'm not on a mission against vitamin E, but for years urologists would say take vitamin E and that was a bit of a joke. Many people have tried it with no success. Perhaps if you were on anything else that could of helpe dyou as well. Pentox for me almost immediatlely helped the flow of blood to my penis as it grew in the flaccid size and looked pump, must have something to do with blood thinners and the blood getting to all the hard to reach areas, nothing could work that fast (within 24 hours).
why doesnt anyone answer me anymore arghhhhhhh.....please dont dominate this forum guys....you know who you are.
Quote from: Iceman on November 03, 2009, 11:44:00 PM
why doesnt anyone answer me anymore arghhhhhhh.....please dont dominate this forum guys....you know who you are.
I think that Pycnogenol is potentially interesting when used alongside l-arginine (and moreso in conjunction with pentox and possibly viagra). Thanks for posting the study, the one relating to l-arginine and pycnogenol in relation to erection strength is worth checking out if you haven't already.
Quote from: Iceman on November 03, 2009, 11:44:00 PM
why doesnt anyone answer me anymore arghhhhhhh.....please dont dominate this forum guys....you know who you are.
Here's the one I use. Sorry that you are getting ignored. - George
http://www.iherb.com/Now-Foods-Gamma-E-Complex-Advanced-120-Softgels/299?at=0 (http://www.iherb.com/Now-Foods-Gamma-E-Complex-Advanced-120-Softgels/299?at=0)
1) thx george - i was referring to pycnogenol as ive just ordered a whole lot and want to know if anyone has tried this and results etc
2) CBK - just a bit frustrated mate as i need info on these supps as I think this forum should be focusing on positive results and new supp results ( just my opinion)
3) have a new dent and this is depressing me - its on the side and i hope i dont get the hour glass effect - i will fu#%ing kill myself - its hideous!!!
Very unfortunately I cannot tolerate Pentox. If you guys couldnt use Pentox then what would you suggest to try in place of it.
Any suggestions would be helpful.
Woodman
What were the problems you had with it?
I vaguely remember something about Taurine helping people tolerate pentox, I will look around for the info again.
Might need to reconsider taking Vitamin D at breakfast?
The Track-Your-Plaque Forum is buzzing with information that taking Vitamin D with soluble fibers prevents the absorption of the supplements.
I did not know this! The soluble fiber (oat bran, flaxseed, pectin, Metamucil, etc) binds the supplements and prevents absorption.
Supplements should be taken 1-hour prior to/ or 2-hours after meals w/ soluble fiber.
Has anyone else come across this information?
Quote from: Jackieo on November 04, 2009, 02:30:23 PM
Might need to reconsider taking Vitamin D at breakfast?
The Track-Your-Plaque Forum is buzzing with information that taking Vitamin D with soluble fibers prevents the absorption of the supplements.
I did not know this! The soluble fiber (oat bran, flaxseed, pectin, Metamucil, etc) binds the supplements and prevents absorption.
Supplements should be taken 1-hour prior to/ or 2-hours after meals w/ soluble fiber.
Has anyone else come across this information?
Information like this is very useful. Perhaps we should have a thread pertaining to when best to take the various supplements that are useful to us. We could thrash out a consensus over a period of time, and then it'll be quite easy to put this is list form, so that a handy guide is available to people. This will allow us all to gain maximum benefit from our supplements.
Quote from: Jackieo on November 04, 2009, 02:30:23 PM
The Track-Your-Plaque Forum is buzzing with information that taking Vitamin D with soluble fibers prevents the absorption of the supplements.
I did not know this! The soluble fiber (oat bran, flaxseed, pectin, Metamucil, etc) binds the supplements and prevents absorption.
Supplements should be taken 1-hour prior to/ or 2-hours after meals w/ soluble fiber.
Interesting. I have a lot of doubts about this. All during the time I was raising my Vitamin D, I was taking it with a lot of soluble fiber and I still managed to raise it to where I wanted it with no problem. What I do know is that the dry pill form of Vitamin D presents all sorts of problems. One should only take the oil base softgel form and should ALWAYS get their levels tested to make sure they are responding AND that they are not over responding. - George
Quote from: Woodman on November 04, 2009, 01:57:54 AM
Very unfortunately I cannot tolerate Pentox. If you guys couldnt use Pentox then what would you suggest to try in place of it.
Any suggestions would be helpful.
Woodman
Certainly ALC is an option, one that has been helpful for a number of us. And if your problems with Pentox are related to issues with your gastro-intestinal tract, then you might want to explore LDN. LDN is pretty much known to stop Irritable Bowl type stuff. And it certainly worked for me in that regard. And, though I have no evidence to back it up, I suspect it might be useful in dealing with Peyronie's as well. But like Pentox, it requires an off-label prescription. - George
Skunkworks- I experiance heavy depression and become withdrawn. Also it plays with my emotions during the process. Its not right off from the start. It starts off slowly and ramps up begins showing signs at about 4 weeks and gets worse. Around 8 weeks Iam in the middle by 12 weeks its pretty intense. I ve never made it past the 12 week mark or so. I tryed 3 attempts the last time my family members asked me what was going on because I was not acting like myself. Once they mentioned it to me it made me realize it must be the Pentox so I stopped after a little while the effects wore off and things went back to normal.
Pentox did benefit me. It helped alot with blood flow & erections. It also helped with the pain witch is one of the most important things for me. It took me a year to learn about it and find a doctor to prescribe it when I couldnt take it I was very disappointed. I am sure if I was taking it this past yr or so my condition would not still be progressing.
George999- I ve been taking ALC the capsules 250mg twice a day its the spring valley brand. Iam not sure what the correct dosage should be per day. Iam not very well versed on the supplements. I try to read the board and get what others like yourself suggest.
Iam currently taking 400mg Vit. E twice a day, 250mg ALC twice a day, 500mg l-Arginine twice a day, and 25-50 mg Viagra every other night or so. Along with using the VED protocal that jackp listed a while back in his postings.
I have been reading about LDN and it looks very interesting. Iam curious about the downsides to taking it if there is any I do not remember reading any up to now. I think if it would be a good avenue for Peyronies Disease then I could get my MD to prescribe it for me if I bring the info to him.
woodman
Woodman, At this point there is virtually no evidence for LDN in terms of Peyronie's. There ARE a raft of other things it has been found useful for though, and if you can identify it with one of those you would stand a better chance of getting a prescription. - George
Quote from: Woodman on November 04, 2009, 10:24:46 PM
George999- I ve been taking ALC the capsules 250mg twice a day its the spring valley brand. Iam not sure what the correct dosage should be per day.
I'd recommend taking both capsules right when you wake up on an empty stomach, and wait 20-30 minutes before having breakfast (and from another topic, I found reducing methionine helpful, so you might want to consider not eating egg whites).
Woodman - Before I was on Pentox (now currently off of it) I was taking ALC. I would take 2g's per day and it took away all the pain and it seemed to slightly help with curvature, not as much as the Pentox did, but it was still helpful.
I would spread the 2g's of ALC out though, take 1g in the morning and 1g in the evening. Initially this dosage gave me diarrhea, but I switched brands and that completely went away. I forgot which brand I was using because I haven't used it in 6 months. I will check for you today though and let you know. Also I worked up to the 2g/day over the course of a couple weeks so my body could adapt to it.
It may just coincidence, but I think I am seeing results from my oral treatments already.
Erection frequency and strength is through the roof compared to 4 weeks ago.
When my penis is full erect, the dents are not that bad, this makes the one lump far less obtrusive. (actually where it is could classify it as a clitoris stimulator luckily).
I think I was quite lucky in that I got onto pentox within 3-4 months of injury (there are two incidents which may have been the injury, so cannot tell for sure).
Everyone needs to be on pentox.
That is normal, within the first day of being on pentox I got solid full "pumped" erections, and bigger hang. It goes to work right away apprently, I've been preaching this for months now, this is not a joke drug.
Comebackid
Just to clarify my treatments, all taken daily:
3 x Trental (pentox)
3 x 500iu Vitamin E
horny goat weed
flax seed oil
2.5g l-arginine
1g taurine
Also completely wheat and dairy free diet.
Would it be stupid or even dangerous to get pentox online and take it without a script? I can't get my doc to prescribe it and I feel like I'm missing out.
I wouldn't recommend it, this is tragic, we know this drug helps and a doctor won't prescribe it, forcing you to take risk to find in on the internet out of desperation, kind of makes me angry. Did you try taking him the Dr. Lue studies? Depending on where you live the APDA has a list of peyronies disease friendly doctors in different parts of the country, only two of them are affiliated with the APDA. You might try seeking them out as they would be more willing to write the script for pentox. If you google Association of Peyronies Disease Advocates you can find their site. Some of those doctors have been added to our mass mailing project, but we have not decided if we will mail to the doctors associated with the APDA yet or not.
Comebackid
Quote from: hornman on November 06, 2009, 06:12:32 PM
Would it be stupid or even dangerous to get pentox online and take it without a script? I can't get my doc to prescribe it and I feel like I'm missing out.
In my opinion it is time to find a new doctor. http://www.peyroniesassociation.org (http://www.peyroniesassociation.org)
Thanks for the link Iwillis. Comeback. He knows of the Lue studies. but he said he has used Pentox for patients in the past and found it to be ineffective.
Quote from: hornman on November 07, 2009, 04:22:11 PM
Thanks for the link Iwillis. Comeback. He knows of the Lue studies. but he said he has used Pentox for patients in the past and found it to be ineffective.
There is also the very impressive Iranian study. So lets go down the list one by one:
2003Quote
Nitric Oxide. 2003 Dec;9(4):229-44.
L-arginine and phosphodiesterase (PDE) inhibitors counteract fibrosis in the Peyronie's fibrotic plaque and related fibroblast cultures.
Valente EG, Vernet D, Ferrini MG, Qian A, Rajfer J, Gonzalez-Cadavid NF.
Division of Urology, Research and Education Institute, Harbor-UCLA Medical Center, Torrance, CA, USA.
Inducible nitric oxide synthase (iNOS) is expressed in both the fibrotic plaque of Peyronie's disease (Peyronies Disease) in the human, and in the Peyronies Disease-like plaque elicited by injection of TGFbeta1 into the penile tunica albuginea (TA) of the rat. Long-term inhibition of iNOS activity, presumably by blocking nitric oxide (NO)- and cGMP-mediated effects triggered by iNOS expression, exacerbates tissue fibrosis through an increase in: (a) collagen synthesis, (b) levels of reactive oxygen species (ROS), and (c) the differentiation of fibroblasts into myofibroblasts. We have now investigated whether: (a) phosphodiesterase (PDE) isoforms, that regulate the interplay of cGMP and cAMP pathways, are expressed in both the human and rat TA; and (b) L-arginine, that stimulates NOS activity and hence NO synthesis, and PDE inhibitors, that increase the levels of cGMP and/or cAMP, can inhibit collagen synthesis and induce fibroblast/myofibroblast apoptosis, thus acting as antifibrotic agents. We have found by immunohistochemistry, RT/PCR, and Western blot that PDE5A-3 and PDE4A, B, and D variants are indeed expressed in human and rat normal TA and Peyronies Disease plaque tissue, as well as in their respective fibroblast cultures. As expected, in the Peyronies Disease fibroblast cultures, pentoxifylline (non-specific cAMP-PDE inhibitor) increased cAMP levels without affecting cGMP levels, whereas sildenafil (PDE5A inhibitor) raised cGMP levels. Both agents and L-arginine reduced the expression of collagen I (but not collagen III) and the myofibroblast marker, alpha-smooth muscle actin, as determined by immunocytochemistry and quantitative image analysis. These effects were mimicked by incubation with 8-Br-cGMP, which in addition increased apoptosis, as measured by TUNEL. When L-arginine (2.25 g/kg/day), pentoxifylline (10 mg/kg/day), or sildenafil (10 mg/kg/day) was given individually in the drinking water for 45 days to rats with a Peyronies Disease-like plaque induced by TGF beta1, each treatment resulted in a 80-95% reduction in both plaque size and in the collagen/fibroblast ratio, as determined by Masson trichrome staining. Both sildenafil and pentoxiphylline stimulated fibroblast apoptosis within the TA. Our results support the hypothesis that the increase in NO and/or cGMP/cAMP levels by long-term administration of nitrergic agents or inhibitors of PDE, may be effective in reversing the fibrosis of Peyronies Disease, and more speculatively, other fibrotic conditions.
PMID: 14996430 [PubMed - indexed for MEDLINE]
2006QuoteNat Clin Pract Urol. 2006 Feb;3(2):111-5; quiz 116.
Treatment of Peyronie's disease with oral pentoxifylline.
Brant WO, Dean RC, Lue TF.
Neurourology and Erectile Dysfunction, University of California, San Francisco, CA 94143, USA.
BACKGROUND: A 51-year-old male presented with a penile deformity without obvious etiology. Physical examination revealed hard plaques in the dorsal and ventral penis. INVESTIGATIONS: Physical examination, penile ultrasound. DIAGNOSIS: Peyronie's disease. MANAGEMENT: Oral pentoxifylline.
PMID: 16470210 [PubMed - indexed for MEDLINE]
2008QuoteAsian J Androl. 2008 Jan;10(1):79-87.
Non-surgical therapy of Peyronie's disease.
Taylor FL, Levine LA.
Department of Urology, Rush University Medical Center, Chicago, IL 60612, USA. Frederick_Taylor@rush.edu
The present paper provides a review of the available non-surgical treatments for Peyronie's disease (Peyronies Disease). A review of published literature on oral, intralesional, external energy and iontophoresis therapies for Peyronies Disease was performed, and the published results of available treatment options reviewed. The authors recommendations for appropriate non-surgical management of Peyronies Disease are provided. Although there are many published reports that show the efficacy of non-surgical therapies for Peyronies Disease, there is a lack of large scale, multicenter controlled clinical trials, which makes treatment recommendations difficult. Careful review of the literature does suggest that there are treatment options that make scientific sense and appear to stabilize the disease process, reduce deformity, and improve function. Offering no treatment at all will encourage our patients to pursue alternative treatments, which might do harm, and misses the opportunity to do some good. Clearly further work is necessary to develop safe and effective non-surgical treatments for Peyronies Disease.
PMID: 18087647 [PubMed - indexed for MEDLINE]
2009QuoteBJU Int. 2009 Oct 26. [Epub ahead of print]
A double-blind placebo-controlled study of the efficacy and safety of pentoxifylline in early chronic Peyronie's disease.
Safarinejad MR, Asgari MA, Hosseini SY, Dadkhah F.
Urology and Nephrology Research Centre and Department of Urology, Shaheed Modarress Hospital, Shahid Beheshti University (MC), Tehran, Iran.
OBJECTIVE To analyse the safety and efficacy of pentoxifylline sustained-release (PTX-SR) treatment in patients with early chronic Peyronie's disease (Peyronies Disease). PATIENTS AND METHODS In all, 228 patients with a mean (sd) age of 51 (9) years who had early chronic Peyronies Disease were randomized to receive 400 mg PTX-SR (Apo-Pentoxifylline, Apotex Inc., Toronto, Canada) twice daily (group 1, 114) or similar regimen of placebo (group 2, 114) for 6 months. A medical history was taken and the men had a complete physical examination. The following variables were assessed before and after therapy: penile curvature and penile artery spectral traces (end-diastolic velocity, EDV, peak systolic velocity, PSV, and resistivity index, RI, of the right and left cavernous arteries assessed with dynamic penile duplex ultrasonography), plaque characteristics (assessed by penile X-ray and penile ultrasonography), pain (assessed by visual analogue scale), erectile function (assessed by the International Index of Erectile Function, IIEF questionnaire), treatment satisfaction (assessed by Erectile Dysfunction Inventory of Treatment Satisfaction questionnaire), and side-effects. Patient perception of penile curvature and plaque size, and mean weekly intercourse attempts were also assessed. RESULTS Overall, 36.9% of patients who received PTX-SR reported a positive response, vs only 4.5% in the placebo group. Of patients in PTX-SR group, 12 (11%) had disease progression, vs 46 (42%) in placebo group (P = 0.01). Improvement in penile curvature (P = 0.01), and plaque volume (P = 0.001) was significantly greater in patients treated with PTX-SR than placebo. The increase in IIEF total score was significantly higher in the PTX-SR group (P = 0.02). Mean PSV changes after therapy compared to baseline were statistically significant between PTX-SR (right, +11.4%, left, +11.7%) and placebo-treated (+0.2% and -4.2%, respectively) patients (both P = 0.04). CONCLUSIONS PTX-R was moderately effective in reducing penile curvature and plaque volume in patients with early chronic Peyronies Disease. Further studies with different treatment regimens are needed to better elucidate the beneficial effects of PTX-SR in Peyronies Disease.
PMID: 19863517 [PubMed - as supplied by publisher]
This guy is determined to go by his own experience even when four published studies contradict his opinion. I agree with lwillis, find a new urologist and get a referral to him or her for a second opinion. Do your homework first and find a doc who believes in Pentoxifylline treatment for Peyronie's. Don't be afraid to do some travel if necessary. Many of these doctors will take care of everything in one visit. Beyond that you just keep in touch via email or telephone. - George
Whew! I just got the message I was hoping for back from my urologist as I wrote him an e-mail requesting a prescription for Pentox using all the data and links you provided to its superiority in battling Peyronies over vitamin E (which he had put me on). Got the reply:
"No problem.
I put an order in for pentox twice a day.
Some use once a day dose, other use two or three doses a day.
You need to take it for 6 months.
Go to any Kaiser pharmacy to pick up your medication. You need to check in on arrival and present your membership card. Use as directed. Stop medication if severe side effects."
Would people here recommend 2 or 3 doses a day? And what kind of "severe side effects" could I potentially experience? And are there other supplements that help reduce side effects (I seem to think I saw someone mention "taurine" as an aid).
I also just put in my order with Fitzz for the 3 cyl. Vitality Plus VED system (making sure to put "TEAM" into the coupon code for $25 off the price... thanks for the heads up).
Plus I went to Walgreens a couple days ago and got a bottle of l'arginine 1000mg pills. Any recommended daily dosage of this? Also, I've seen some people here recommend adding pycnogenol with this. Any particular reason for that?
And I already have a prescription for levitra, so once I get my Pentox that will have me off and going on the PAV cocktail, and coupled with the 3 cylinder VED and 26 week protocol, I feel a sense of confidence by being proactive in fighting the peyronies.
Had I not found this forum, I would have just taken my urologist's original advice of "vitamin E and wait and see". Everyone here has shared their knowledge and experience and given me a real action plan to work with. But more than anything else, you've given me hope, and I can't thank everyone enough.
With regards to dosage, I take:
3 x pentox daily
2 x 1g l-arg daily (before bed and as soon as i wake up)
I would stay on Vit E if possible, one study I have seen shows that the combination of vitE and pentox do great things against scar tissue.
It looks like you have a great treatment plan lined up, good work.
Quote from: sunsetsonfire on November 08, 2009, 01:53:27 AM
Would people here recommend 2 or 3 doses a day? And what kind of "severe side effects" could I potentially experience? And are there other supplements that help reduce side effects (I seem to think I saw someone mention "taurine" as an aid).
Dr. Lue is the expert on this and he recommends 3X/day. But what I find fascinating here is that the Iranian study found that 2X/day worked well. That is pretty convincing that a lower dose might work just as well as the traditional 3X/day dose. As for side effects the most typical is gastric distress. Be sure to take these ONLY with meals even though they end up not completely evenly distributed through the day. Two times a day would mean with breakfast and supper for example. The more food you take them with the better. Your stomach will thank you for it.
I really find it interesting that he pretty much mimicked the Iranian study with his prescription, so apparently that was what carried weight here. Anyone trying to get a Pentox prescription should note this. In your case, if it works well, and if you have problems at the end of six months, and if he refuses to extend the prescription, you may be in the position once again of needing to look for another doctor, but at least for now the problem is solved and hopefully this works well for you! Congratulations! - George
So recently I came down with a very bad flu (no idea if it was part of that whole swine thing) and spent the better part of two weeks laid up in bed, and I discontinued use of pentox in that time. I felt weird about taking a voluntary blood thinner when you have a fever and should be taking aspirin instead anyway, and then I went on corticosteroids to combat the virus.
That was about a week and a half ago and I haven't fully restarted taking pentox for various reasons. I wonder what the effect is of my near-month layoff? They say it takes six months to see any benefit from the drug - will that be true now again? Or will I be able to continue normally?
George,
Thought you might find this interesting considering your use, and interest in Vitamin D. Finding out that Vit D is immunosuppressive is quite interesting with regards to Peyronie's. The whole scope of the article is actually quite interesting in relation to auto immune diseases. Complicates things somewhat.
http://www.sciencedaily.com/releases/2008/01/080125223302.htm
Exceprt
QuoteVitamin D deficiency, long interpreted as a cause of disease, is more likely the result of the disease process, and increasing intake of vitamin D often makes the disease worse. "Dysregulation of vitamin D has been observed in many chronic diseases, including many thought to be autoimmune," said J.C. Waterhouse, Ph.D., lead author of a book chapter on vitamin D and chronic disease.
While Trevor Marshall makes some good points regarding Vitamin D, he is also very off the track. There are now study after study showing that raising Vitamin D levels has a net positive effect on health. His claim that disease is responsible for lowering Vitamin D levels is true. Inflammation lowers Vitamin D levels. We know that. We also know that Vitamin D fights inflammation. This is why sick people need more Vitamin D than well people. We also know that Vitamin D IS immune suppressive. In particular, it suppresses auto immune activity. But we also know that Vitamin D is at the same time immune enhancing. For one, it enhances the capability of macrophages to attack invaders. So the bottom line is that Trevor Marshall is simply interpreting the data wrong and is fighting a losing battle against an army of dedicated Vitamin D researchers around the world, many of whom have credentials far superior in the research world to Trevor Marshal. Doctors who are prescribing Vitamin D to their patients are seeing extremely positive results. I just came across the following for example:
Quote from: Vitamin D CouncilProfessor Bruce Hollis presented findings from his and Carol Wagner's five million dollar Thrasher Research Fund and NIH sponsored randomized controlled trials of about 500 pregnant women. Bruce and Carol's discoveries are vital for every pregnant woman. Their studies had three arms: 400, 2,000, and 4,000 IU/day.
1. 4,000 IU/day during pregnancy was safe (not a single adverse event) but only resulted in a mean Vitamin D blood level of 27 ng/ml in the newborn infants, indicating to me that 4,000 IU per day during pregnancy is not enough.
2. During pregnancy, 25(OH)D (Vitamin D) levels had a direct influence on activated Vitamin D levels in the mother's blood, with a minimum Vitamin D level of 40 ng/ml needed for mothers to obtain maximum activated vitamin D levels. (As most pregnant women have Vitamin D levels less than 40 ng/ml, this implies most pregnant women suffer from chronic substrate starvation and cannot make as much activated Vitamin D as their placenta wants to make.)
3. Complications of pregnancy, such as preterm labor, preterm birth, and infection were lowest in women taking 4,000 IU/day, Women taking 2,000 IU per day had more infections than women taking 4,000 IU/day. Women taking 400 IU/day, as exists in prenatal vitamins, had double the pregnancy complications of the women taking 4,000 IU/day.
This is just one of many examples I could cite, others note dramatic benefits when Vitamin D is given to sick people as well, but Trevor Marshall and his adherents continue to argue that Vitamin D supplementation is somehow an extraordinary health threat. They are simply wrong. And if you scroll back you will find references to Trevor Marshall over and over on this thread. - George
PS -
Quoteincreasing intake of vitamin D often makes the disease worse
SHOW ME THE CASE STUDIES THAT BACK THAT STATEMENT UP. You can't. They don't exist. This is not a statement of fact, its an opinion based on half baked research. There are LOTS of people now taking Vitamin D for all sorts of ailments and I don't see many complaining that things get worse with Vitamin D. There are also, as I mentioned previously, carefully controlled studies involving people with auto-immune diseases, indicating that Vitamin D makes things better, not worse. A few negative Vitamin D studies are currently being buried in a onslaught of studies from around the world demonstrating NET positive effects. While a few people are made worse by Vitamin D, the vast majority are helped. Its just like with medication. Most highly effective medicines can result in harm in rare cases. Thats a risk of life.
Fair enough, wasn't saying I supported the article, just bringing it to your attention.
Quote from: skunkworks on December 05, 2009, 04:06:40 AM
Fair enough, wasn't saying I supported the article, just bringing it to your attention.
Thanks, I appreciate that, but it is actually kind of old news that just resurfaces every now and then. - George
Hello,
I wanted to ask people what the verdict is on Vitamin E. I read on here on the accounts of improvements page that someone tried synthetic vitamin E to no avail, but after trying natural vitamin E with some results, that person took on Peyronie's Disease Institute's recommendation of Full Spectrum Vitamin E I believe it was. I looked on the website and they state "We have spent considerable time and effort studying all the vitamin E products available, as a result we strongly recommend the interested person use only vitamin E products from Yasoo Health Inc.".
Thus, I am not only asking whether people have had positive experience using vitamin E, but also whether people have used any of the vitamin-E related products from PDI and if they could comment about their experience. Thank you,
Bart
Bart
I was on Vitiamin E for years. I had the same good result with the big box brand as the expensive stuff. 1995 through 2007.
Jackp
For whatever its worth, I got absolutely zero effectiveness from synthetic Vitamin E. Natural Vitamin E worked better for me and then saw the recommendation for full spectrum Vitamin E which was even more helpful. Each persons situation is unique. For me, it was not worth it to waste my money on synthetic Vitamin E since it was not helping me. But try it. If it works for you then it works. If it doesn't, its dirt cheap. If I had it to do over again, I wouldn't waste time or money on any form of Vitamin E. I would rather get on Pentox right away. Pentox is so far superior to any form of Vitamin E, its ridiculous. Right now, Pentoxifylline is the number one best oral medication for Peyronie's hands down. The sooner one gets started with it the better. As for PDI, I have used their products, including their full spec E. You can get other brands of full spec E elsewhere that are just as good and not as expensive. But I repeat. Don't waste your time on supplements. It is often fairly simple to stop the progress of Peyronie's, but it is far more difficult to achieve any significant degree of reversal. Get on Pentoxifylline and stop it before it spreads and advances. - George
Hey George,
I have been posting my situation on the congenital vs. peyronie's thread, where jackp has been really helpful. I actually am going to start my treatments in the new year; a combination of VED, pentox, L-arg, and as of right now balanced vitamin E complex (400 IU). My uro said I do not have classical Peyronies Disease, since he could not feel a plaque, but at 23 years of age he also did not rule it out which was comforting knowing I was actually be considered at face value. What I can say though is that this has been present for a while, it is not getting worse and I am not experiencing inflammation, so right now I feel the VED will be the most helpful. Can I ask you though how much did you pay for the vitamin E from PDI and what was it called exactly? Thanks,
Bart
Quote from: bart15 on December 08, 2009, 01:11:53 AM
Can I ask you though how much did you pay for the vitamin E from PDI and what was it called exactly? Thanks,
Bart
Yes, I was using Yasoo's Integral E 400/400 60 soft gels for $28.00. I found it to be a very good product at a very good price compared to what Yasoo sells it for through other vendors, but quite expensive when compared to competing products like GNCs Isomer E and Now Foods Gamma E. As for the VED and Pentox, I think they work really well together. A lot of people seem to believe that VEDs promote inflammation. I believe that the exact opposite is true and that when used responsibly, VEDs often alleviate inflammation rather than aggravating it. Through in the Pentoxifylline and get Vitamin D levels correct and you have a winning combination. - George
i could swear this forum had a guidelines thread that would help me avoid asking again but i can't seem to find one so here it goes...
what's the maximum IU's of Vitamin E suggested daily for Peyronies. it seems to me that it's higher than normal suggestions.
anyone?
Normal upper level on Vitamin E is 400IU/day. Many urologists recommend 800IU/day for Peronie's, a few up to 1,000IU/day, and some 400IU/day. My experience is that anything over 800IU/day is overkill and really doesn't provide any additional benefit. Vitamin E is a Vitamin K antagonist, so if you are taking any significant amount of Vitamin E, you should also be taking some Vitamin K in order to help prevent excessive bleeding issues. Even 800IU/day of Vitamin E on a regular basis can present bleeding issues IF you are deficient in Vitamin K. AND all of this (obviously) presents a problem for people on drugs like Coumadin. - George
I've had a recent flareup and progression and at the suggestion of a forum member I've been taking daily doses of ibuprofen for 10 to 14 days. The recommendation was 800 mg. 3X a day, but I've only been doing the 800 2X (total 1600 mg), due to some other meds I'm taking and GI issues. Bottom line, after about 4 days, my pain began to subside. I've been on the 1600 now for about a week or a little longer and the inflammation is much better. I plan to go for 14 days then cut back to a smaller dosage.
I had read about the topical ibuprofen and was really anxious to give that a try (to avoid GI problems), but when I Googled it I came up with the news release below RE topical ibuprofen. I also came up with some sites that are selling the products mentioned in this release. Some are on well know websites (one is on Amazon.com) and I'm wondering if they are being sold illegally. Has anyone tried topical ibuprofen for Peyronie's and does anyone consider it unsafe? Obviously it's not FDA approved but being sold anyway.
FDA NEWS RELEASE
For Immediate Release: August 20, 2009
Media Inquiries: Siobhan DeLancey, 301-796-4668, siobhan.delancey@fda.hhs.gov
Consumer Inquiries: 888-INFO-FDA
FDA Issues Warning Letters to Marketers of Topical Ibuprofen Drug Products
The U.S. Food and Drug Administration today announced that the agency issued warning letters to eight companies marketing unlawful over-the-counter (OTC) topical drug products containing the pain reliever ibuprofen.
The products, which contain ibuprofen in combination with a variety of other active ingredients and are marketed for pain relief, are unapproved new drugs that require an approved new drug application in order to be legally marketed. Under its OTC drug monograph system, the FDA allows some OTC drugs to be marketed without first obtaining agency approval. These drugs must comply with applicable monographs, that is, regulations that set requirements for the drugs' labeling, formulations, and indications. Ibuprofen is not included in any OTC drug monograph. Companies wishing to market OTC drugs that do not meet the monograph requirements can submit and receive approval of a new drug application.
"These companies have an obligation to the public to demonstrate to the FDA that their products are safe and effective, and they have failed to do so," said Deborah M. Autor, director of the Office of Compliance at the FDA's Center for Drug Evaluation and Research.
Orally administered ibuprofen has been approved as a safe and effective treatment for pain and inflammation. There are no approved applications for topical ibuprofen products. Although the FDA has proposed to add orally administered ibuprofen to the applicable OTC monograph, it has never proposed that topical ibuprofen be added to any OTC monograph. Topical ibuprofen is often promoted as a "safer" alternative that can be used in place of oral ibuprofen because of certain side effects, such as stomach ulcers and cardiovascular effects that are associated with prolonged use of oral ibuprofen. However, these safety claims for topical ibuprofen have not been reviewed by the FDA, nor has the agency evaluated what side effects might be associated with such products.
The names of the products and manufacturers that received warning letters are:
Emuprofen (Progressive Emu, Inc.)
BioEntopic 15% Ibuprofen Crème (BioCentric Laboratories, Inc.)
Ibunex Topical Ibuprofen (Core Products International, Inc.)
LoPain AF 15% Ibuprofen Crème (Geromatrix Health Products)
IB-RELIEF (MEKT LLC)
Profen HP (Ridge Medical Products)
IbuPRO-10 Plus (Meditrend, Inc. dba Progena Professional Formulations)
IBU-RELIEF 12 (Wonder Laboratories)
The FDA warning letters advise the companies that they may not continue to market their products without FDA approval. The FDA is requesting a written response from the companies within 15 business days of receipt of the warning letters stating how they will correct these violations and prevent similar violations in the future.
The warning letters are available on this FDA Web site.
#
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I'm fortunate in that I have what I thought was pretty good health coverage. I went on line to renew my meds this week and discovered that they have dropped covering Viagra, Cialis, and Levitra!! I've emailed them as to why and what the options are. It's a bit frustrating nonetheless.
Is anyone else experiencing this? I would encourage you to check with your individual mail order or local pharmacies. Seems mine has dropped these drugs from their formulary.
Anyway, I've researched something call Revatio. It appears to be a 20mg form of Sildenafil. It is marketed for cardiovascular issues and not ED. But everything I've read so far says it is 20mg Sildenafil. It also appears to be significantly cheaper than Viagra.
Are any of you familiar with Revatio?
Is there a particular fish oil that anyone could recommend here in the forum?
The two things to look for are:
1) EPA/DHA content - the higher the concentration, the better
2) Freedom from contaminants - especially heavy metals
Nordic Naturals appears to be sort of a gold standard (they test for exotic chemical contaminants in addition to heavy metals), but its expensive.
I am currently using the Natural Factors brand from Canada, not quite so good as Nordic Naturals, but a little less expensive.
There are other good products out there.
Bodybuilding.com www.bodybuilding.com/store/san/vaso.html - Good price on a likely superior L-Arginine, San Vasoflow. San Vasoflow - A time release L-arginine supplement with "Norvaline" which blocks the activity of arginase - thus promoting the change of arginine into nitric oxide via NO synthase pathways. (some complaints about odor and taste)
looks like they discontinued this product =/
The manufacturer, SANN, discontinued VasoFlow, not BodyBuilding.com. - George
is anyone here taking vasoflow for the l-arginine? I'm interested in buying it but would like to hear other peoples personal experience with it before doing so. I'f not then ill most likely just buy l-arginine by itself.
I was looking up the peyronies disease institute on google after reading Theodore R. Herazy post and peyronies disease institute scam popped up right below, which led to ehow.com.
http://www.ehow.com/about_5402943_herbs-treat-peyronies-disease.html
Something that cought my eye was this
"While taking the other herbal remedies (which can be taken as long as you wish with the exception of ginseng), you may also use homeopathic remedies to improve your condition. Two remedies that are rumored to help Peyronie's disease are Silica and Fluoric acid. There has been very little documented evidence about these two homeopathic treatments in connection to Peyronie's, but since there is almost no chance of harm with a homeopathic remedy, it is worth a shot. Try the two of them together at a low potency of 3x (where x is equal to 10 times the standard homeopathic potency) for 2 weeks and then stop and wait to see if there are results. Secale may be another helpful remedy as it aids sluggish circulation and blood clots. Try a small dose of 6x or less three times a day and see if symptoms improve"
Has anyone here on the forum tied these homeopathic remedies with any results?
and of course here's
"There are many claims on the Internet about healing Peyronie's. One website in particular, The Peyronie's Disease Institute, looks like a scam from top to bottom. Do not trust in these claims unless you have the backing of your physician."
Homeopathy is a huge waste of money built on lies and ignorance and deceit. Do not waste your money.
Homeopathy never been shown to work in controlled trials; at the end of the day you have to go with the scientific method. Keep in mind that the placebo effect works about 30% of the time anyway.
The foremost doctors first recommend conservative treatment, which consists of pentox, l-arginine, and viagra. Pentox is a cheaper drug that is said to break down scar tissue and allow freer movement of blood. L-arginine is another blood flow enhancing supplement (found at wal-mart or any other pharmacy). Some also say take vitamin E.
The first step is to get a penile duplex ultrasound, which will detect the plaque and scar activity. Then have a urologist get you a prescription for pentox. L-arginine is over the counter, and you may or may not need viagra depending on what the doctor says. If you take vitamin E, take 400-800 mg per day and l-arginine about 1000-2000 mg per day.
Also get on a VED therapy (vacuum erection device) or traction device, which has proven sufficient to correct deformaties. It is a lot of overwhelming information and first, but take the time to read through all the message boards, especially those regarding oral treatment and traction/VED.
If you provide us with a country or city where you are located, we generally can try to direct you to a good doctor.
Brend, I definitely see all three of your issues as being related. All are degenerative, fibrotic, inflammatory and autoimmune type syndromes. Old Man's advice for dealing with Peyronie's specifically is good. Pentox is the very best oral treatment for Peyronie's at this point, but it is no match for VED or traction when it comes to rapid correction of curvature. Many guys with Peyronie's use both Pentox and VED or traction together successfully. Aside from that, I would look at strategies to attack the underlying cause and hopefully prevent even more problems in the future. I would look for a doctor specializing in "functional medicine". They are more likely to connect the dots between seemingly disparate diseases. Things I would concentrate on are 1) checking your serum vitamin D levels and making sure they are optimal (see Vitamin D Council (http://www.vitamindcouncil.org) and Grassroots Health (http://www.grassrootshealth.org) websites) and 2) looking into LDN (see Treating Fibromyalgia With Low Dose Naltrexone (http://www.webspawner.com/users/ldnforfms/index.html)) which might even help your fibromyalgia significantly. I am convinced that LDN will also help prevent developing more of these types of diseases in the future and may even help with your Peyronie's and Dupeytren's. - George
Thanks for your replies. I have been reading up on pyronies on this site and am learning more. It is overwhelming but I know I must persist. I do now intend to go back to the urologist, but will be armed with info and questions.I will tell him that I want to try the non invasive therapies and only to consider surgery as a last resort.
Chiguy. You asked about where I live. I am in Ireland. I hope someone can recommend a Doc here who is open to therapies.
George. I am not aware of any doctors in Ireland who can connect the dots or look at functional medicines. Maybe someone on this forum knows of such a doc in Ireland.
Again thanks for the support
Brend.
Tim468 is a doctor in the UK I believe. He might be able to point you in that direction, granted Ireland is a different country, but still close. Also, he might be able to tell you where to go for the medications, since it might be different on the other side of the fence.
Definitely look up pentox, l-arginine supplements, and vitamin E. You can also order a VED or traction device to Ireland.
brend, you might want to listen to some of Mary Boyle's radio shows (http://www.blogtalkradio.com/mary-boyle-bradley). She's been instrumental in bringing LDN to people's attention in Ireland and vicinity.
chiguy:
No, Dr. Tim468 lives Stateside somewhere in PA I believe. He is a pulmonary specialist by profession.
Old Man
Ah sorry I stand corrected. For some reason I thought he had said he was in the UK.
Brend, I don't know if you do Facebook or not, but if you do you might check here:
http://www.facebook.com/pages/Low-Dose-Naltrexone-Ireland/214478879688?v=info#/pages/Low-Dose-Naltrexone-Ireland/214478879688?v=wall (http://www.facebook.com/pages/Low-Dose-Naltrexone-Ireland/214478879688?v=info#/pages/Low-Dose-Naltrexone-Ireland/214478879688?v=wall)
Also there is a new Irish LDN forum page here:
http://www.ldndatabase.com/forum/showthread.php?p=197 (http://www.ldndatabase.com/forum/showthread.php?p=197)
I think if you can locate a doc who prescribes LDN, you will likely have a doc who can connect the dots, or at least lets hope so. - George
I have been thinking that it might be a good idea to get on cialis for blood flow and extra benefit of strong erections. Is there any downside to cialis? I'm only 18 so I'm kind of worried that there might be some ill long term effects, but I am also interested in it because when I have sex with my gf my erections aren't as strong as I would like them to be.
George,
Thanks for the info re Irish forum and link to facebook.
Brendan
Hi all,
I woukd like to bring you up to date.
I spoke to my doc and he explained that Naltrexone is not licenced for sale in this country, although it is available. He would be willing to prescribe it as long as I sign a waiver absolving his medical practice of any responsibility. I dont know what to do.
Brend
Ask for pentox (Trental).
Quote from: brend on January 29, 2010, 12:36:10 PM
Hi all,
I woukd like to bring you up to date.
I spoke to my doc and he explained that Naltrexone is not licenced for sale in this country, although it is available. He would be willing to prescribe it as long as I sign a waiver absolving his medical practice of any responsibility. I dont know what to do.
Brend
Naltrexone is very safe, fortunately. Remember that it has been found safe in 50 mg doses, which is a much higher dose than the 2-4.5 mg doses used in a low dose regimen.
Brenden, Both Naltrexone and Pentoxifylline are VERY safe. I am currently taking both simultaneously for several months now. The Naltrexone in its Low Dose form is most likely to help your fibro. The Pentox is most likely to help your Peyronie's. I really think you need to read all the information about Low Dose Naltrexone at the lowdosenaltrexone.org website so you more fully understand the background of this drug. If your doctor is willing to prescribe it for you, that would indicate that you are really fortunate to have an understanding and open minded doctor. His request for you to sign a waiver is only reasonable since he doesn't want to get in trouble for prescribing a non-approved drug. Also I think it would be good if you looked up the youtube videos on LDN and watched some. I think it could really help your fibro more than anything you have tried so far, but YOU are the one who has to make that decision and YOU are the one who has to feel comfortable with that decision and YOU are the one who needs to learn the ins and outs of this drug to proceed. Pentoxifylline, of course, is a whole other issue. It is absolutely the best drug out there for Peyronie's. It would likely keep it from worsening, but there is really nothing that can turn the clock back other than physical approaches such as VED and traction. If I were in your shoes, I would be taking both Naltrexone and Pentoxifylline, both are safe, easy to take AND inexpensive. But in the end the decision is yours to make. - George
Note to chiguy: Pentox WILL NOT help Brenden with his fibromyalgia which in many ways is more debilitating than Peyronie's although neither is a picnic of course. Only Low Dose Naltrexone will help with fibromyalgia.
Oh and Id like to add that the reason why I'm even considering cialis at such a young age is because of sexual side effects due to peyronies disease, but I think the cialis isn't necessary, just curious.
I'm 24, and the uro was deciding between L-arg and cialis for me (Along with the pentox he already prescribed). Essentially what he told me was that he can't seem to tell which one has more of an effect (I'm sure cialis improves the erections more but both are good for cardio function) but the price difference is pretty significant. He told me cialis is quite expensive, whereas L-arg isn't. I think that in the long run, both do not contribute as much as pentox so it is something to consider.
On a side note, I was definitely thinking that my erections sucked too and I was worried that it would interfere with my sexual intercourse with my gf. Compounded by a pretty significant curve (70 or so degrees mid shaft downwards and 15 or so degrees midshaft leftwards) I was really stressed...particularly since the only previous sexual intercourse experience I had was a one night stand and I was really intoxicated so I had a case of the whiskey dick haha (oh the embarrassment haha). Anyways, and I acknowledge that already with only a month of treatment I have experienced better erections, that you just honestly need to be comfortable I believe and the erections will come with the confidence. While talking to my uro about erection problems (And quite possibly a prosthesis as a fixer upper for the curve and erection difficulties) he said I am way too early in my treatment regiment to think about a prosthesis, let alone any sort of grafting surgery. He actually said that I wouldn't even really be a candidate for prosthesis until we could prove that any ED issues I was "experiencing" were due to organic problems, which I now can say for me at least that it was all my mindset.
So yea, although telling you to relax and be confident is of course easier said than done in the moment, I think from a Peyronies Disease treatment perspective the cialis and L-arg have similar results long term for different prices. Of course if it is an organic problem then I'm sure most people would say to get the cialis, or likely compound the effects and take both if you can afford it.
Bart
Quote from: bart15 on February 14, 2010, 08:14:42 PM
I'm 24, and the uro was deciding between L-arg and cialis for me (Along with the pentox he already prescribed). Essentially what he told me was that he can't seem to tell which one has more of an effect (I'm sure cialis improves the erections more but both are good for cardio function) but the price difference is pretty significant. He told me cialis is quite expensive, whereas L-arg isn't. I think that in the long run, both do not contribute as much as pentox so it is something to consider.
On a side note, I was definitely thinking that my erections sucked too and I was worried that it would interfere with my sexual intercourse with my gf. Compounded by a pretty significant curve (70 or so degrees mid shaft downwards and 15 or so degrees midshaft leftwards) I was really stressed...particularly since the only previous sexual intercourse experience I had was a one night stand and I was really intoxicated so I had a case of the whiskey dick haha (oh the embarrassment haha). Anyways, and I acknowledge that already with only a month of treatment I have experienced better erections, that you just honestly need to be comfortable I believe and the erections will come with the confidence. While talking to my uro about erection problems (And quite possibly a prosthesis as a fixer upper for the curve and erection difficulties) he said I am way too early in my treatment regiment to think about a prosthesis, let alone any sort of grafting surgery. He actually said that I wouldn't even really be a candidate for prosthesis until we could prove that any ED issues I was "experiencing" were due to organic problems, which I now can say for me at least that it was all my mindset.
So yea, although telling you to relax and be confident is of course easier said than done in the moment, I think from a Peyronies Disease treatment perspective the cialis and L-arg have similar results long term for different prices. Of course if it is an organic problem then I'm sure most people would say to get the cialis, or likely compound the effects and take both if you can afford it.
Bart
I always had plenty of anxiety for solid erections due to my peyronies, but in the end I got so comfortable with my gf-that was no longer a issue. Of course my erections aren't as solid as I would like them to be, but they are strong enough thanks to the VED therapy. If you are having real issues creating a erection while masterbation then it is quite possible it's not your anxiety. But hearing what you have to say it sounds like you need to work on your anxiety as well as your peyronies. The bad thing is you got peyronies disease, the good news is that you now have a chance to improve yourself in health, whether its physical and mental (which actually go together quite a bit) I'm a 18 year old peyronies disease sufferer and I cannot begin to tell you how much peyronies destroyed me, at first. I developed panic attacks, GAD, (Generalized Anxiety Disorder) and Depression. I spent my days asking questions such as, why me? Did I deserve this? What am I going to do now? Pefore I got peyronies I was already having a lot of issues and this was the last straw for me. I first dramatically got worse and worse. Turning into a alchoholic, got a DUI (after only having my license for 3 months) lost a lot of friends and just started to slowly die in my own self pity. In the end I met my gf, now my fiance, and started to change for the better. I stoped drinking, smoking cigs, smoking pot entirely, sadly that didn't end my anxiety and depression. So I had to get on lexapro even though I didn't evoided that route for years. I can honestly say it has helped me a whole great deal, but with a few setbacks. Lexapro made my erections even worse, because it is horrible for blood flow, but with the ved therapy and daily exercise it hasn't been much of a issue. I also suffer from pre mature ejaculation, and even though that doesn't bother my fiance much, it most definitely bothers me. Sometimes when life seems hard and you are more unfortunate than others you just have to let go that way of thinking and only think of ways to better yourself. Exercising has been helping me out a great deal mentally and physically (two seem to go together quite a lot) and with my sexual performance as well. My fiance wants me to become stronger and bigger, but I am really into cardio like running, because it helps my health. bleh sorry for rambling on =P hopefully this helps you out some. If you would like to talk don't hesitate to message me.
If you really feel Cialis is necessary then get a prescription for that, but I would only keep it for sexual activity, due to how expensive it is. I haven't gotten Cialis simply because I don't want to depend on it. I will only resort to that if it is completely necessary. L-Arginine is definitely something you should get. It's great for nitric oxide and It's great for nocturnal erections, except for my case =P doesn't really help with my nocturnal erections, but that's probably due to the Lexapro.
Hey despise,
I was actually just inputing my opinion on your prior post about getting some info on cialis, and what people thought about it. Personally, I don't need it. And yes I have the variety of supplements (Pentox, L-Arg, Vitamin E and D3) and both VED and traction, so I am really bombarding this condition. (On a side note, I am very pleased with both physical therapies, as I am getting good stretches with the traction device and today I had a really solid B cylinder session with the VED...the head of my penis almost touched the actual negative pressure pump so I got huge engorgement which I did not think was previously possible :) )
Also, I do not remember a traumatic experience in my case and because my curve has been around for as long as I can remember, I may have a congenital curve rather than peyronie's. (I talked to a guy on here who is considering surgery, and he showed me some pics of his curve which are very similar to mine, to which the surgeon told him that guys with large penises often develop that assymetrical curve due to one side being shorter than the other). Why I bring that up is that none of this stuff has been proven for congenital so it is really a shot in the dark. Anyways, things are progressing for me. I commend you on the workouts, peyronie's/curve or not, people should work out regardless.
Are you still taking the anti anxiety meds? Do you think there is room for you to decrease the dosages you intake to maybe help with your erections. I don't know much about the underlying mechanisms involved there, but you mentioned yourself you aren't getting any nocturnal erections and it could be cuz of the meds...
Quote from: bart15 on February 15, 2010, 12:46:15 AM
Hey despise,
I was actually just inputing my opinion on your prior post about getting some info on cialis, and what people thought about it. Personally, I don't need it. And yes I have the variety of supplements (Pentox, L-Arg, Vitamin E and D3) and both VED and traction, so I am really bombarding this condition. (On a side note, I am very pleased with both physical therapies, as I am getting good stretches with the traction device and today I had a really solid B cylinder session with the VED...the head of my penis almost touched the actual negative pressure pump so I got huge engorgement which I did not think was previously possible :) )
Also, I do not remember a traumatic experience in my case and because my curve has been around for as long as I can remember, I may have a congenital curve rather than peyronie's. (I talked to a guy on here who is considering surgery, and he showed me some pics of his curve which are very similar to mine, to which the surgeon told him that guys with large penises often develop that assymetrical curve due to one side being shorter than the other). Why I bring that up is that none of this stuff has been proven for congenital so it is really a shot in the dark. Anyways, things are progressing for me. I commend you on the workouts, peyronie's/curve or not, people should work out regardless.
Are you still taking the anti anxiety meds? Do you think there is room for you to decrease the dosages you intake to maybe help with your erections. I don't know much about the underlying mechanisms involved there, but you mentioned yourself you aren't getting any nocturnal erections and it could be cuz of the meds...
hehe oh gosh how embarissing =P reread your post and yeah my bad! Do you really think the traction is helping? I have been really curious about it, but it just kinda sounds pointless, because I can stretch my plaque from the VED. I still haven't got on Pentox either sadly, but once my medical insurance falls through, that's the first thing I'm doing.
I'm still on 10mg of lexapro, which is the smallest therapeutic dose, but I'm most definitely not planning on getting off of it any time soon. I know It's horrible for my erections and it would help me a great deal with the peyronies, but believe it or not my anxiety is way more traumitizing than peyronies. I would way rather be a little happier and have a little peace of mind then to not have the best sexual performance. I'll admit lexapro hasn't completely fixed my anxiety and depression, but it has definitely helped, and that's a start.
I have continued taking 800 IU Vitamin E daily since my first urologist recommend it more than 1 year ago, during the acute and painful stage. In reading about it, more than 200 IU daily for an extended period can sometimes lead to problems. More importantly, the multiple studies referenced in the study liked below lead me to believe that after the pain subsides, Vitamin E is not very effective in decreasing either the plaque or curvature. For these reasons, I am going to stop taking high dose Vitamin E.
http://www.hawaii.edu/hivandaids/Oral%20Therapy%20for%20Peyronies%20Disease.pdf
Excerpt:
...with additional follow-up of a larger cohort, they subsequently reported that while 99% of patients experienced a decrease in pain, 70% noted no objective improvement.
Pryor and Farrell reported that 35% of patients taking vitamin E noted an improvement in penile pain, however minimal effects on plaque size or penile curvature could be expected.
Gelbard et al evaluated patient's perception of their disease in a questionnaire survey. They detected no difference between those patients treated with vitamin E and those untreated with respect to overall improvement (22% vs 19%), improvement in curvature (11% vs 11%) or improvement in pain (53% vs 44%). More untreated patients characterized their disease as one of gradual resolution (14%) than those treated with vitamin E (9%).
BrooksBro
IMHO you need to stay with the Vitamin E about 6 more months. I was on 400IU 3 times a day for the first 18 months the dropped to twice a day after for years. Back in 1995 that was all we had along with Potaba.
At 18 months my curve got lots better, the bad thing is when this happens you loose 20 to 25% of penile length depending on the curve. Hopefully you are on the VED protocol to help prevent the loss of length and it will help the curve.
My 2 cents.
Jackp
Thanks for the suggestion. I have been using the FastSize for about three months, and it seems to be restoring length and girth. I don't yet detect any reduction in plaque or curve. The prescription meds (oral PAV & topical testosterone) are effective, so I don't need a VED, yet. Erections are pain-free and adequate for myself and spouse.
My dietitian was telling me not to take over 200 IU per day. She said there are studies showing an increased risk of death at higher doses (800-1600 IU/day), mostly in men over 60 with existing heart disease. Other studies found an INCREASE in cell damage at 800 IU, the very thing Vitamin E is supposed to prevent. The recommended intake is only 15 IU/day.
Quote from: jackp on February 16, 2010, 10:42:44 AM
BrooksBro
IMHO you need to stay with the Vitamin E about 6 more months. I was on 400IU 3 times a day for the first 18 months the dropped to twice a day after for years. Back in 1995 that was all we had along with Potaba.
At 18 months my curve got lots better, the bad thing is when this happens you loose 20 to 25% of penile length depending on the curve. Hopefully you are on the VED protocol to help prevent the loss of length and it will help the curve.
My 2 cents.
Jackp
Brooks Bro
I was on that much Vitiamin E from 1995 until my heart stents 10/07. I was going to the heart doctor yearly for check up and he told me he had no problem with the Vitiamin E. After the heart stents I was on Plavix for just over a year. Now I do not take any type of blood thinner except ibuprofen for arthritis.
I was at the heart doctor last month for an Echo and blood work. Everything is fine.
Jackp
George is promoting mangosteen juice. I would stay away from juices all together. Of all people george you should know better than to promote drinking any juice because you have pounded the boards on glycation, drinking juice of anykind (dumps) sugar into the body all at once and that is a big no-no.
Eating fruit is good because the sugar is bound in fiber and released (slowly) into the body at a rate the pancreas can handle.
Anyone have experience with Caverta tablets? They are supposed to be an offshore brand of sildenafil (Viagra). If you have experience with them, what was it, what was your source and cost? Thanks.
How does Pentox help Peyronie's and can it improve erectile function? Are there any major side effects associated with it and have any of the board members who have used it experienced side effects, especially cardiovascular ones?
I have been taking Vitamin E 800 IU for quite some time and have experienced some mild pain in my sinuses and noticed blood in my phlegm several times in the last few months. Is it true that excessive use of Vitamin E can cause hemorrhagic stroke and what is the recommended dosage? Should I get tested for Vitamin E in my blood?
Quote from: snowydreams on March 08, 2010, 03:51:44 PM
How does Pentox help Peyronie's and can it improve erectile function?
In multiple ways. For example, it blocks TFG-beta1, an immune system cytokine known to play a role in aggravating Peyronie's. TGF-beta1 is normally utilized by the body in the process of breaking down scar tissue. In the case of Peyronie's it becomes overactive and damages adjacent healthy tissue in the process, thus adding to, rather than reducing scar tissue. Pentox subdues TGF-beta1 activity. Additionally, Pentox makes red blood cells more flexible so they can better oxygenate damaged tissues. Pentox likely has other ways of benefiting guys with Peyronie's, but these are the two best known benefits. I took Pentox for a couple of years and made sure I took it only with meals. It was extremely helpful to me and I had almost no side effects. At this point I am off it since my supply ran out and Dr Lue did not renew my prescription. I have been off it for over a month now and my Peyronie's has not become active again and shows no signs of doing so at this point. I am very grateful to Dr Lue for prescribing it for me and am convinced that it has saved me a lot of pain and further damage. I highly recommend it.
Quote from: snowydreams on March 08, 2010, 03:51:44 PM
Are there any major side effects associated with it and have any of the board members who have used it experienced side effects, especially cardiovascular ones?
Each patient, of course, reacts differently. But most of the reported side effects are gastro intestinal or sleep issues and none are serious. Most people tolerate Pentox well and it has a very long track record of safe use.
Quote from: snowydreams on March 08, 2010, 03:51:44 PM
I have been taking Vitamin E 800 IU for quite some time and have experienced some mild pain in my sinuses and noticed blood in my phlegm several times in the last few months. Is it true that excessive use of Vitamin E can cause hemorrhagic stroke and what is the recommended dosage? Should I get tested for Vitamin E in my blood?
Vitamin E tends to cause bleeding because it counteracts the effects of Vitamin K. If you are not taking a prescription blood thinner, you will probably find that taking a little bit of Vitamin K on a regular basis will stop any Vitamin E bleeding effect you might be experiencing.
DISCLAIMER: I am just trying to provide you with information. I am not a doctor and would suggest you discuss these issues with your doctor before proceeding further. Your pharmacist might also be able to give you expert advice on these issues. - George
There is a new and very revealing study out on Vitamin D and cancer. Here is the link: Association between pre-diagnostic circulating vitamin D concentration and risk of colorectal cancer in European populations:a nested case-control study (http://www.bmj.com/cgi/content/full/340/jan21_3/b5500?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=jenab&searchid=1&FIRSTINDEX=0&sortspec=date&resourcetype=HWCIT).
The really revealing part is this brief note:
QuoteThe dose-response analysis of the interaction between circulating 25-(OH)D concentration and level of dietary retinol intake (P for interaction=0.030) indicates that the inverse colorectal cancer risk association of higher 25-(OH)D was stronger at lower intakes of retinol (table 5).
In plain English this means that Vitamin A blocks the beneficial effects of Vitamin D! There has been a lot of speculation on how Vitamin A and Vitamin D interact. Some have even suggested that they are synergistic. Now we are learning that quite the opposite is true. High Vitamin A intake will negate high Vitamin D intake. This means that those getting their Vitamin D from things like cod liver oil may not be reducing cancer risk at all. In fact they may be increasing cancer risk because of the blocking effect of the Vitamin A. This may explain why a some Vitamin D testing has shown it to actually elevate cancer risk. If the source was cod liver oil, that could be the expected result. Because this effect involves receptors, it is likely that Vitamin A also blocks other beneficial qualities of Vitamin D. Beware!
In light of this new emerging knowledge of Vitamin A/Vitamin D interaction, old studies are currently being reevaluated and results being reported. Here is an example: Meta-analysis of longitudinal studies: Serum vitamin D and prostate cancer risk (http://www.ncbi.nlm.nih.gov/pubmed/19939760?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=1)
If you want to be sure you are getting enough Vitamin A, DO NOT TAKE RETINOL! Instead make sure you are getting enough beta carotene. This way your body can control Vitamin A levels and prevent them from becoming too elevated.
- George
Quote from: George999 on March 08, 2010, 11:05:50 PM
Quote from: snowydreams on March 08, 2010, 03:51:44 PM
How does Pentox help Peyronie's and can it improve erectile function?
In multiple ways. For example, it blocks TFG-beta1, an immune system cytokine known to play a role in aggravating Peyronie's. TGF-beta1 is normally utilized by the body in the process of breaking down scar tissue. In the case of Peyronie's it becomes overactive and damages adjacent healthy tissue in the process, thus adding to, rather than reducing scar tissue. Pentox subdues TGF-beta1 activity. Additionally, Pentox makes red blood cells more flexible so they can better oxygenate damaged tissues. Pentox likely has other ways of benefiting guys with Peyronie's, but these are the two best known benefits. I took Pentox for a couple of years and made sure I took it only with meals. It was extremely helpful to me and I had almost no side effects. At this point I am off it since my supply ran out and Dr Lue did not renew my prescription. I have been off it for over a month now and my Peyronie's has not become active again and shows no signs of doing so at this point. I am very grateful to Dr Lue for prescribing it for me and am convinced that it has saved me a lot of pain and further damage. I highly recommend it.
Quote from: snowydreams on March 08, 2010, 03:51:44 PM
Are there any major side effects associated with it and have any of the board members who have used it experienced side effects, especially cardiovascular ones?
Each patient, of course, reacts differently. But most of the reported side effects are gastro intestinal or sleep issues and none are serious. Most people tolerate Pentox well and it has a very long track record of safe use.
Quote from: snowydreams on March 08, 2010, 03:51:44 PM
I have been taking Vitamin E 800 IU for quite some time and have experienced some mild pain in my sinuses and noticed blood in my phlegm several times in the last few months. Is it true that excessive use of Vitamin E can cause hemorrhagic stroke and what is the recommended dosage? Should I get tested for Vitamin E in my blood?
Vitamin E tends to cause bleeding because it counteracts the effects of Vitamin K. If you are not taking a prescription blood thinner, you will probably find that taking a little bit of Vitamin K on a regular basis will stop any Vitamin E bleeding effect you might be experiencing.
DISCLAIMER: I am just trying to provide you with information. I am not a doctor and would suggest you discuss these issues with your doctor before proceeding further. Your pharmacist might also be able to give you expert advice on these issues. - George
Hi George,
What was Dr. Lue's rationale for not renewing your pentox script? Does he just feel that it's done all it can do? How are you, BTW?
Fred
Fred, Quite honestly I really don't know why doctor Lue did not renew the prescription. I emailed him and he did not respond. Perhaps he expected me to schedule follow up visits which I did not do. In all fairness, I haven't pursued it any further since I haven't had a problem. The Pentox I took seemingly did the job and at this point I really no longer seem to have a need for it. I would still highly recommend both Pentoxifylline AND Dr. Lue when it comes to dealing with Peyronie's. My current overall health and seemingly my Peyronie's symptoms as well, currently seem to be headed in a positive direction. At this point I am really planning to look into the possibility that I might have overloaded my body with elemental mercury. I have used fluorescent lighting in my home exclusively for over thirty years and have accidentally broken them on multiple occasions and exposed myself repeatedly to the fumes as a result (I am now changing all my home lighting to LED as quickly as possible, about 50% converted at this point). Years ago I painted the interior of my home with paint that was later found to be contaminated with inordinate amounts of mercury for which the manufacturer was later successfully sued. Additionally, around the time all this stuff started, I had a mouthful of large disintegrating amalgam fillings which were all removed and replaced around the same time. If you look at the effects of overloading oneself with elemental mercury, you can see how I might have some suspicions in this regard. The hypertension and peripheral neuropathy tend to match up to some degree. I am also wondering in the bigger scheme of things if this might be driving systemic inflammation which is also feeding into the Peyronie's syndrome. So right now, I am exploring in other areas, but if it turns out that I feel a need to get back on Pentoxifylline, I won't hesitate to seek another referral to Dr Lue. - George
George,
Glad to hear the positive report RE your Peyronie's. Wish I could report the same. I got a VED around Xmas, but haven't been able to use it much due to increase in pain. I've been doing 800 mg ibuprofen 2x daily for about 10 days, but it's not much help. I'm stopping it today. Just wish I could find a uro in the area who would prescribe pentox, but it might be too late even for that as I've had pain for almost 4 years now. I do my best to stay positive, but with chronic pain and the toll it's taken on sexual intimacy with my wife it can get quite depressing. Hopefully some of the current research (Xiaflex, Hyperthermia, etc.) will present us with some better options.
Fred
Fred22:
I suppose by now you have read what the cost of Xiaflex is at the moment. The distributor price for it is $3,250.00 per vial. Each vial contains only about one or two injections at the most based on who is doing it.
By the time that the uro/doc's markup is applied, the cost will be much higher. Don't think that insurance will be paying for it either. Fairly sure that Medicare will not pay either.
I don't see much hope for the price coming down soon. Also, my doc says that he doesn't think that Xiaflex would help much with Peyronies Disease.
Sorry to negative about it, but that is the way that is looks to me right now. Reserve the right to be corrected later if it does prove beneficial.
Old Man
Old Man,
With all due respect I don't think you can make those statements about xiaflex. Since the frist FDA trial is not done with the attention of trying to get great results, but merely prove safety. On top of this, my doctor reviewed the reports from Auxilium, and says these are excellent results.
Insurance companies do love to not pay for treatments, but if the xiaflex treatments are cheaper than surgery, they may cover them.
If xiaflex is shown to be effective and the injections are not covered, that is a shameful tactic by an insurance company. As we know with the VED some companies will cover them, and some not, depending on the code and diagnosis ED vs. Peyronies. There are no high rate studies to show VED helps peyronies, but some of us have seen results. If top urologists do xiaflex studies which show improvement that will be awfully hard to ignore.
Comebackid
CBK:
You have your position and I have mine. If you will note, I left a caveat in the last sentence of my previous post. Will change my position when information to the contrary is afforded at some future date and will so indicate on this forum. I based my statements on the word of my personal physician who is a specialist in DC operations. His information came from his medical association and a personal friend somewhere on the East Coast who is well versed in his knowledge of Xiaflex since he participated in the trials, etc. To his knowledge nothing has been established to indicate that any insurance will cover the cost yet. He stated his group will not be administering the medicine until the coverage has or has not been established due to the high cost.
Whether or not Xiaflex will work for Peyronies Disease has yet to be established according to the information given to me at the present time. So, bottom line, I don't hold out much hope for any change in my position until proven otherwise by the trials for Peyronies Disease, if and when they are ever done.
Old Man
Does Pentox interact with DHEA or PDE5 inhibitors(Viagra, Levitra or Cialis) and what is the name of the company that makes Pentox in the USA? If one takes Pentox for a long time, should he do any diagnostic testing(blood or cardiac tests) or be examined by a physician?
Quote from: snowydreams on April 15, 2010, 04:11:51 PM
Does Pentox interact with DHEA or PDE5 inhibitors(Viagra, Levitra or Cialis) and what is the name of the company that makes Pentox in the USA? If one takes Pentox for a long time, should he do any diagnostic testing(blood or cardiac tests) or be examined by a physician?
Snowydreams, the brand name of pentox is trental. I took it for 8 months and was not required to do any testing. In general, it is a safe medication with few side effects. It is often given to people with intermittent claudication (due to severe diabetes), people with liver fibrosis and sickle cell anemia. Simply put, it's meant for very sick people and if they can handle it, healthy people with Peyronie's can handle it.
I believe some urologists have prescribed pentox along with cialis and viagra, so I do not believe there are any interaction issues. Talk to your urologist or doctor for specifics though.
-Skjald
Quote from: Skjaldborg on April 16, 2010, 12:24:30 PM
Quote from: snowydreams on April 15, 2010, 04:11:51 PM
Does Pentox interact with DHEA or PDE5 inhibitors(Viagra, Levitra or Cialis) and what is the name of the company that makes Pentox in the USA? If one takes Pentox for a long time, should he do any diagnostic testing(blood or cardiac tests) or be examined by a physician?
Snowydreams, the brand name of pentox is trental. I took it for 8 months and was not required to do any testing. In general, it is a safe medication with few side effects. It is often given to people with intermittent claudication (due to severe diabetes), people with liver fibrosis and sickle cell anemia. Simply put, it's meant for very sick people and if they can handle it, healthy people with Peyronie's can handle it.
I believe some urologists have prescribed pentox along with cialis and viagra, so I do not believe there are any interaction issues. Talk to your urologist or doctor for specifics though.
-Skjald
Good reply. I am on what my doc calls "triple therapy." That is: 400 mg pentox 3X daily, 25 mg Viagra nightly, 1,000 mg L-Argenine nightly. If cost is a concern, then be sure to ask for generic rather than brand name.
From Wikipedia:
Pentoxifylline is the International Nonproprietary Name (INN) of a drug sold by Aventis under the brand name Trental. Its chemical name is 1-(5-oxohexyl)-3, 7-dimethylxanthine. Pentoxifylline is a xanthine derivative. Other brand names include Pentox, Pentoxil, and Flexital.
Other brand names:
Pentoxil (Upsher Smith)
Pentoxin (Ratiopharm)
Artal (Leiras)
Vasonit (Lannacher)
QuoteSnowydreams, the brand name of pentox is trental. I took it for 8 months and was not required to do any testing. In general, it is a safe medication with few side effects. It is often given to people with intermittent claudication (due to severe diabetes), people with liver fibrosis and sickle cell anemia. Simply put, it's meant for very sick people and if they can handle it, healthy people with Peyronie's can handle it.
I believe some urologists have prescribed pentox along with cialis and viagra, so I do not believe there are any interaction issues. Talk to your urologist or doctor for specifics though.
But don't both Pentox and Cialis or Viagra affect the cardiovascular system and wouldn't taking them both at the same time heighten any symptoms. I remember when I took Flomax years ago, I used to occasionally get palpitations(100+) at rest even though I was in good cardiac health and my cardiac tests were normal and Flomax is safer than both Pentox and Cialis or Viagra, so I was wondering if there was any interaction and whether it is prudent to do any diagnostic testing when taking Pentox long-term or combining it with Cialis or Viagra. I think it is better to call the company which makes the medication as they would have more info than a urologist or pharmacist.
Some of the side effects of Pentox mentioned here:
http://www.rxlist.com/trental-drug.htm
http://www.healthyontario.com/DrugDetails.aspx?brand_id=1718&brand_name=ratio-Pentoxifylline
Quote from: snowydreams on April 17, 2010, 01:49:42 PMFlomax is safer than both Pentox and Cialis or Viagra
Can you please provide a reference for that statement? ALL drugs have side effects. ALL drugs have potential interactions. You can't tell which drugs are safer and which are less safe just by reading warning labels. You tell which drugs are safer by comparing the statistics of how many people have dangerous reactions to them. Since I don't think you have those numbers, I don't think you have a basis to say that Pentoxifylline and PD5 inhibitors are less safe than an alpha blocker like Flomax. And VERY frankly, I would take the opinion off a pharmacist over a pharmaceutical company employee ANY DAY as to the relative safety of a given drug. Would you also go to a Ford dealer to tell you how safe a Ford is? Not me! I would go to an independent person with training. NO company is going to tell you that their product is unsafe. Lots of people listened to Merck tell them how safe Vioxx is and more than a few of them are dead as a result. Go to an INDEPENDENT pharmacist with these questions. Even doctors are suspect because they DO get perks for moving certain pharmaceutical products. In the whole scheme of things ALL the drugs you mentioned, including Flomax, are relatively safe. These are drugs that literally millions of people around the world use safely day in and day out. TALK to a pharmacist AND to your physician IF you have any pre-existing conditions or are currently on any other prescription drugs. ALL prescription drugs should be managed by a physician. Thats the bottom line. Some are fudging on that a bit because it is so difficult to find doctors willing to prescribe Pentox, but in that case its extremely important to talk to a pharmacist AND read ALL the precautions AND stop taking the drug if red flags emerge. But please don't post statements without any evidence to back them up.
Side effects are always part of taking a medication. Funny you should mention Flomax - which many men have associated with the onset of their Peyronie's Disease - in comparison to Pentox, which some of us take to treat Peyronie's Disease.
Flomax could easily trigger Peyronie's due to interference with testosterone metabolism, yet that is not a listed side effect.
But you are right, any combination of drugs that potentially affect circulation could affect you adversely if you have a history of that happening.
Tim
QuoteCan you please provide a reference for that statement? ALL drugs have side effects. ALL drugs have potential interactions. You can't tell which drugs are safer and which are less safe just by reading warning labels. You tell which drugs are safer by comparing the statistics of how many people have dangerous reactions to them. Since I don't think you have those numbers, I don't think you have a basis to say that Pentoxifylline and PD5 inhibitors are less safe than an alpha blocker like Flomax. And VERY frankly, I would take the opinion off a pharmacist over a pharmaceutical company employee ANY DAY as to the relative safety of a given drug. Would you also go to a Ford dealer to tell you how safe a Ford is? Not me! I would go to an independent person with training. NO company is going to tell you that their product is unsafe. Lots of people listened to Merck tell them how safe Vioxx is and more than a few of them are dead as a result. Go to an INDEPENDENT pharmacist with these questions. Even doctors are suspect because they DO get perks for moving certain pharmaceutical products. In the whole scheme of things ALL the drugs you mentioned, including Flomax, are relatively safe. These are drugs that literally millions of people around the world use safely day in and day out. TALK to a pharmacist AND to your physician IF you have any pre-existing conditions or are currently on any other prescription drugs. ALL prescription drugs should be managed by a physician. Thats the bottom line. Some are fudging on that a bit because it is so difficult to find doctors willing to prescribe Pentox, but in that case its extremely important to talk to a pharmacist AND read ALL the precautions AND stop taking the drug if red flags emerge. But please don't post statements without any evidence to back them up.
No need to get angry. I was just interested in whether Pentox has any side effects, especially when taken long-term. I certainly think that the potential benefits of Pentox and the PDE5 inhibitors outweigh the risks, though it is prudent to be checked up if taking them long-term. As for Flomax being safer than the PDE5 inhibitors, then I have no doubt that Flomax is safer than them as I remember reading an article which mentioned that hundreds of deaths have been reported from taking Viagra(who knows how many have been unreported or caused by Viagra and other PDE5 inhibitors). I haven't heard of any deaths caused by Flomax, though it is possible. As for Flomax and Pentox, I haven't read about Pentox as much as Flomax, but one of the side effects reported for Pentox is internal bleeding, something which I haven't read about Flomax. Also, Pentox is generally recommended to be taken for several months, thus increasing the potential for side effects, while Flomax is taken for a much shorter time and can have an immediate effect on relieving symptoms. That all drugs have side effects is true, but there is a difference between the side effects of these drugs. I am sure you wouldn't compare between Saw Palmetto or Vioxx which killed thousands and caused thousands of heart attacks. As for the information about side effects, I didn't just read warning labels, but looked up the side effects on the internet and read pharmaceutical compendiums. If anything, the side effects for medications printed up by pharmacists exclude many side effects. I agree that pharmaceutical companies aren't honest and cannot be trusted in many aspects, but I would presume they would be honest when it comes to their medications interacting with other medications. I mentioned calling the pharmaceutical company because a pharmacist told me to do so when I asked her whether Pentox interacts with another medication and pharmacists don't know everything about a certain medicine. I don't know why you excluded pharmacists from pharmaceutical companies and physicians in your criticism as they can be just as guilty as the previous two as they have an interest in selling medication and making a profit.
QuoteSide effects are always part of taking a medication. Funny you should mention Flomax - which many men have associated with the onset of their Peyronie's Disease - in comparison to Pentox, which some of us take to treat Peyronie's Disease.
Flomax could easily trigger Peyronie's due to interference with testosterone metabolism, yet that is not a listed side effect.
But you are right, any combination of drugs that potentially affect circulation could affect you adversely if you have a history of that happening
Can you give more information on the effect of Flomax on Peyronie's and its interference with testosterone metabolism as I took Flomax for 2 months and my Peyronie's began several months afterwards? How exactly does it interfere with testosterone metabolism? Can this interference be detected on blood tests?
Also, I would presume that most of those have Peyronie's have suffered an injury of some sort as mentioned by many on this forum.
Quote from: snowydreams on April 20, 2010, 12:31:36 PM
No need to get angry. I was just interested in whether Pentox has any side effects, especially when taken long-term. I certainly think that the potential benefits of Pentox and the PDE5 inhibitors outweigh the risks, though it is prudent to be checked up if taking them long-term. As for Flomax being safer than the PDE5 inhibitors, then I have no doubt that Flomax is safer than them as I remember reading an article which mentioned that hundreds of deaths have been reported from taking Viagra(who knows how many have been unreported or caused by Viagra and other PDE5 inhibitors). I haven't heard of any deaths caused by Flomax, though it is possible. As for Flomax and Pentox, I haven't read about Pentox as much as Flomax, but one of the side effects reported for Pentox is internal bleeding, something which I haven't read about Flomax. Also, Pentox is generally recommended to be taken for several months, thus increasing the potential for side effects, while Flomax is taken for a much shorter time and can have an immediate effect on relieving symptoms.
You have to realize that exponentially more people are taking Viagra and other PDE5 inhibitors than are taking Flomax. While Flomax is used mainly by older guys with prostate issues, Viagra is taken by men of all ages for "sexual enhancement". Just comparing the number of Flowmax ads with the number of Viagra ads should be an indication of where the money AND the sales are. You also have to realize that the number of guys taking Viagra WITHOUT a prescription or physician oversight is almost certainly far higher than with Flomax. This is a breeding ground for problems. Viagra type drugs ARE sexual enhancement drugs. Who is going to deliberately overdose on their drug? The Viagra patient or the Flowmax patient? Who is going to be more likely to disregard the warnings on their drug. The guy with the prostate problem or the guy trying to get an even bigger orgasm? That doesn't make Viagra inherently more dangerous than Flowmax. It only makes it more likely to be abused, and when any drug is abused, people usually die as a result.
Next, comparing Flomax to Pentox. Yes, Pentox can cause internal bleeding. It is a blood thinner. Aspirin can cause internal bleeding that can kill you as well. Does that make Aspirin more dangerous than Flowmax? I hardly think so. Here again, if you combine Pentox, Aspirin, and other blood thinners all at the same time, you can run into trouble, although I safely used multiple blood thinners, including Pentox, simultaneously with no problem, mainly because I knew the drugs and supplements in question and took prudent precautions. When you take Pentox, take it with meals. Don't take Pentox if you are taking a major blood thinner like Coumadin OR if you have a pre-existing medical issue like bleeding ulcers. If you are taking Pentox with Vitamin E (also a blood thinner), take Vitamin K as well to counter the blood thinning effects of Vitamin E. If you need to take full dose Aspirin for some reason, you might want to skip the Pentox for a day or so. Common sense sort of stuff.
Quote from: snowydreams on April 20, 2010, 12:31:36 PMThat all drugs have side effects is true, but there is a difference between the side effects of these drugs. I am sure you wouldn't compare between Saw Palmetto or Vioxx which killed thousands and caused thousands of heart attacks.
Believe me, neither Viagra or Pentox can be compared to Vioxx with its hidden risks. Vioxx risks are more akin to Statin drug risks. Nevertheless, I actually disagreed with the decision to remove Vioxx from the market. Vioxx, contrary to popular perception, was actually a good drug. The problem was that it was not restricted to people wherein the benefits would outweigh the risks. Unfortunately it was marketed to people who could have done as well with other less risky drugs and thus was made unavailable even to those who could have benefited from it. Such is life.
Quote from: snowydreams on April 20, 2010, 12:31:36 PMAs for the information about side effects, I didn't just read warning labels, but looked up the side effects on the internet and read pharmaceutical compendiums. If anything, the side effects for medications printed up by pharmacists exclude many side effects. I agree that pharmaceutical companies aren't honest and cannot be trusted in many aspects, but I would presume they would be honest when it comes to their medications interacting with other medications. I mentioned calling the pharmaceutical company because a pharmacist told me to do so when I asked her whether Pentox interacts with another medication and pharmacists don't know everything about a certain medicine. I don't know why you excluded pharmacists from pharmaceutical companies and physicians in your criticism as they can be just as guilty as the previous two as they have an interest in selling medication and making a profit.
Good points.
QuoteSide effects are always part of taking a medication. Funny you should mention Flomax - which many men have associated with the onset of their Peyronie's Disease - in comparison to Pentox, which some of us take to treat Peyronie's Disease.
Flomax could easily trigger Peyronie's due to interference with testosterone metabolism, yet that is not a listed side effect.
But you are right, any combination of drugs that potentially affect circulation could affect you adversely if you have a history of that happening
Quote from: snowydreams on April 20, 2010, 12:31:36 PMCan you give more information on the effect of Flomax on Peyronie's and its interference with testosterone metabolism as I took Flomax for 2 months and my Peyronie's began several months afterwards? How exactly does it interfere with testosterone metabolism? Can this interference be detected on blood tests?
Also, I would presume that most of those have Peyronie's have suffered an injury of some sort as mentioned by many on this forum.
Snowy, I would pay close attention to Tim on this because he is an MD and he pretty much knows what he is talking about. Injuries, often very minor, do trigger Peyronie's, but many men injure their penises and NEVER get Peyronie's as a result. Peyronie's requires not only an injury, but also some underlying metabolic anomaly that facilitates it. What Tim is indicating here is that Flomax may well have been one of likely multiple factors that led to your contracting Peyronie's. - George
George thanks for your support, but I jumped the gun - I was thinking of finasteride, not flomax (two different medications used for BPH). It goes by the name of Proscar, but works by interfering with testosterone. Finasteride is a synthetic anti-androgen that acts by inhibiting type II 5-alpha reductase, the enzyme that converts testosterone to dihydrotestosterone (DHT).
Flomax (tamsulosin) works by a mechanism of smooth muscle relaxation via alpha-adrenergic antagonism. I found two "case reports" of men developing Peyronies within a month of starting Flomax (http://www.ehealthme.com/ds/flomax/peyronie%27s+disease) but I don't think those are hard data quality reports.
Tim
Tim, All I know is that taking any medicine or supplement carries risks. I really suspect there are a lot of meds and even some supplements that can play a role in causing Peyronie's. But NOT taking certain meds or supplements has its own risks. Thus I believe there are meds and sups that can equally prevent Peyronie's and certainly we know of those that can alleviate the symptoms of Peyronie's. But they in turn carry their own risks of causing other problems. All of this has to be weighed by each individual. Life has risks. - George
I have to agree with snowy... I'm absolutely convinced that finasteride caused my peyronie's -- maybe I was always at risk to get it, but it happened during a two week period in which I took propecia. I am convinced that propecia didn't increase my changes to get injured but once I was already injured I could not heal as I otherwise properly would. That propecia modifies TGF-beta is not a cooincidence, I feel. But I've been taking Pentox for well over a year with no negative effects but the occasional upset stomach!
Quote from: ocelot556 on June 25, 2010, 04:17:09 AM
I have to agree with snowy... I'm absolutely convinced that finasteride caused my peyronie's --
That is nice and all, and I'm glad you're convinced, that means a lot. However the simple fact of the matter is that finasteride has been on the market for quite a long time now, and zero connection has been made between Peyronie's and finasteride.
I've talked with George and Tim about pentox. We know that it downregulates the immune system or weakens it in a way while your on the medication. My question is once your off the medication, does your immune system go back to full throttle and the strength it was before the medication? I don't know we have addressed this question on the forum. From what I've read online it appears that pentox will block certain parts of the immune system, but not all of it. I'm concerned that staying on pentox for to long will permanently keep my immune system weak, or have it fail to "trigger" to come back on full throttle when I'm done with medication.
Comebackid
From what I know about Pentox it is simply a drug that suppresses or modulates one small piece of a very complex human immune system. Once you remove the Pentox and it gets out of your system, nothing should prevent an immediate return to normal. This is precisely why your Peyronies tends to get active again once you take away the Pentox. MOST immune system depressing drugs are like this. Once you remove them, things return to where they were before. Otherwise you could just take a few doses and that would be it.
Anything that causes a permanent change in the immune system is not suppressing or modulating it. Its damaging it. And other than *perhaps* a few draconian cancer drugs, I don't know of a whole lot of drugs that would do that. Even the extremely powerful drug regimens that prevent organ rejection have to be maintained or the immune system kicks in and destroys the transplanted organ. So I think there are a lot of myths circulating about risks that just don't exist.
The good thing is that Vitamin D fixes both problems (and other potential ones) at the same time IF you get your blood levels to a healthy point (perhaps I am talking to the wall here again). Another thing that I would recommend for you is a good oral probiotic. A lot of the bacteria that infects us systemically enters through the mouth and a good oral probiotic is a first line of defense against that. There are also, of course, some fairly effective immune boosting supplements, but I would avoid those with the Peyronie's hanging over you. - George
Sorry, skunkworks. You can be as snarky as you want about my theory, which I find funny as there really isn't a consensus reason as to the cause of Peyronie's Disease, but I'm entitled to my opinion. I'm sure people mocked the first questions about Vioxx, but it stayed on the market for years and many people took it with no problem.
Propecia inhibits the presence of dihydrotestosterone, a hormone that is necessary for the development and maintenance of the penis.
If I start a medicine and have an unintended consequence that seems to be in line with that medicine's method of action, it's not wrong to assume that the medicine played some role. I don't need a fact statement to be released by the FDA about what I felt my body go through. I'm not trying to rail on the drug, it's just my opinion that - for me - the lack of 5AR in my blood somehow triggered Peyronies Disease.
Quote from: ocelot556 on July 07, 2010, 05:17:17 AM
Sorry, skunkworks. You can be as snarky as you want about my theory, which I find funny as there really isn't a consensus reason as to the cause of Peyronie's Disease, but I'm entitled to my opinion. I'm sure people mocked the first questions about Vioxx, but it stayed on the market for years and many people took it with no problem.
Propecia inhibits the presence of dihydrotestosterone, a hormone that is necessary for the development and maintenance of the penis.
If I start a medicine and have an unintended consequence that seems to be in line with that medicine's method of action, it's not wrong to assume that the medicine played some role. I don't need a fact statement to be released by the FDA about what I felt my body go through. I'm not trying to rail on the drug, it's just my opinion that - for me - the lack of 5AR in my blood somehow triggered Peyronies Disease.
Ocelot, I really think this is a case where you are both right. 1) I think it is pretty clear that Propecia does NOT cause Peyronie's. A lot of guys use it and never get Peyronie's. 2) I think it is also very clear from the postings on this forum AND from the points you just noted above that Propecia (along with Beta Blockers and a whole lot of other stuff) is almost certainly ASSOCIATED with Peyronie's. That would indicate to me that Procepia + Other Known or Unknown Factors DO cause Peyronie's. In fact, I would go so far as to say that there is NO ONE CAUSE for Peyronie's and that most if not all Peyronie's cases are caused by a combination of factors which likely varies between individuals. This is what makes it so hard to find an effective treatment since Peyronie's is not really a disease, but rather a collection of diseases which present identically in terms of symptoms as one disease. Many other diseases such as Cancer are extremely challenging to treat for the same reason. That is my view. - George
So, George.
My Peyronies developed after I scotch brands. Does that mean that scotch causes Peyronies Disease?
There is a reason why personal anecdotes are not medically acceptable.
Quote from: abraxis on July 07, 2010, 06:32:57 PM
So, George.
My Peyronies developed after I scotch brands. Does that mean that scotch causes Peyronies Disease?
There is a reason why personal anecdotes are not medically acceptable.
If a lot of people are reporting that their illness, whatever it might be, occurs in conjunction with some other specific thing, that indicates a possible association. Cause and association are two different things. If you took the time to read my post, you would see that I was referring to association NOT cause. Specific multiple associations may or may not constitute a cause. But in the case of diseases like Peyronie's, multiple associations are much more likely to be a cause than some specific undiscovered factor. Researchers typically look for a single cause for disease and that is one reason they are so unsuccessful at developing treatments for these types of diseases. They are just beginning to catch hold of the idea that multiple genetic defects can act in conjunction to precipitate certain diseases when combined with certain environmental factors. And this is exactly my point. Associations don't always cause diseases, but the right associations in combination can. And when this is proven, they are referred to as risk factors. People in the medical profession like to rag on personal anecdotes, but believe me, if enough people contact the FDA about their anecdotal stories of reactions to a certain supplement or even medication, an investigation ensues. One anecdotal story indeed is meaningless, but combined they tell as story. AND actually if you read the side effect/risk information on some of these drugs like the ones I mentioned, you might actually just find Peyronie's on the list. - George
For George999 & Despise
Just scanning the January suppliments postings and saw Despise asking about a good fish oil . I use , for heart health , Ascenta NutraSea. I have spoken to them several times and am confident that it is as pure as pure can be.
It is pure fish oil ,sardines /anchovies /mackerel - bottled in Nova Scotia. I use the EPA 1500 MG / DHA 500 MG. They also offer a higher Omega 3 content product. Mine is $47.00 cdn. for 500 ml at Nutrition House. Dose is 1 tsp/5 ml daily.
Quote from: ocelot556 on July 07, 2010, 05:17:17 AM
Sorry, skunkworks. You can be as snarky as you want about my theory, which I find funny as there really isn't a consensus reason as to the cause of Peyronie's Disease, but I'm entitled to my opinion. I'm sure people mocked the first questions about Vioxx, but it stayed on the market for years and many people took it with no problem.
Propecia inhibits the presence of dihydrotestosterone, a hormone that is necessary for the development and maintenance of the penis.
If I start a medicine and have an unintended consequence that seems to be in line with that medicine's method of action, it's not wrong to assume that the medicine played some role. I don't need a fact statement to be released by the FDA about what I felt my body go through. I'm not trying to rail on the drug, it's just my opinion that - for me - the lack of 5AR in my blood somehow triggered Peyronies Disease.
I'd have a lot more time for a theory like this if it didn't involve a drug that has been on the market for decades.
DHT is involved in the development of the penis most definitely, but do you have any evidence to show that it is involved in the maintenance?
The only way I could see finasteride being involved in a heightened risk of Peyronie's would be that it can lower libido and erection strength, and it has been suggested before that having sex with a less than fully erect penis can heighten the risk of injury.
My opinion obviously.
Raw fish oil tends to harbor a sea of contaminants. They range from various heavy metals to things like PCBs and dioxins. Various vendors use a range of techniques to deal with this. Some are highly successful and result in an ultra safe product, others are less so, and some fall on their face and result in a seriously unsafe product. Best ways to tell are Consumer Labs (http://www.consumerlab.com) or to order from a vendor KNOWN to take these issues seriously like Nordic Naturals (http://www.nordicnaturals.com) or The Life Extension Foundation (http://www.lef.org). Remember, Fish Oil supplements are highly concentrated, so if the ingredient is contaminated, the resulting product can be bad news if those contaminants are not removed in the manufacturing process. Beware of inexpensive fish oil products. - George
Quote from: mike67 on July 09, 2010, 10:41:45 PM
For George999 & Despise
Just scanning the January suppliments postings and saw Despise asking about a good fish oil . I use , for heart health , Ascenta NutraSea. I have spoken to them several times and am confident that it is as pure as pure can be.
It is pure fish oil ,sardines /anchovies /mackerel - bottled in Nova Scotia. I use the EPA 1500 MG / DHA 500 MG. They also offer a higher Omega 3 content product. Mine is $47.00 cdn. for 500 ml at Nutrition House. Dose is 1 tsp/5 ml daily.
I'm not a medical professional and neither are most of the men on this Forum. I wasn't aware that we had to post only medically sound and proven theorems in the "Oral Treatments" section.
Skunkworks: I understand your point about finasteride being on the market for a long time, but there ARE many anecdotal reports of adverse effects. Maybe it's a reaction in .1% of the population -- I know that from the reaction my body had to propecia, I stopped taking it within 2 weeks. When you go from a relatively normal young man to someone who doesn't leave his bed and contemplates suicide (something I have never done before, or since) and feeling that rain cloud clear when the course of medicine left my system... I know it had an affect on me beyond the inhibition of DHT. We often don't know why or how the body reacts to the things we put in it.
Here's a study I was able to Google very quickly about DHT inhibition in rats: http://www.asiaandro.com/archive/1008-682X/5/33.htm -- And there's a forum (albeit not as well maintained as this one) that I won't plug here, but is filled with people who have taken propecia and have had it wreck their hormonal balance and cause other physiological damage. A small percentage of the population that is taking Finasteride, yeah, but they're out there.
I don't really care to convince anyone, because I know what happened, and it's way off topic for this thread anyway. It just really makes me bristle when I'm belittled for sharing my opinions (which are just that). Thanks, George, for your well reasoned answer. I agree -- I don't think it was propecia itself, but rather the drug interacting with the specific chemical makeup of my body at the time.
hello everyone.
i have peyronies for quite a long time, 10 years ago, and i am 28 years old now.The fibrosis plaque has stablizie and my penis is not flexibile. I can still masturebate but sex is quite difficult and uncomfortable. I wonder whether treatments like pentox will still be effective for me at this stage? I have been taking vitamin E but it has shown no positive effects so far. I will not consider surgery at this moment because i am waiting and hoping that Xiaflex will help me soften the fibrosis in the near future.
thanks.
Quote from: burnoutz2010 on February 22, 2011, 01:47:14 AM
hello everyone.
i have peyronies for quite a long time, 10 years ago, and i am 28 years old now.The fibrosis plaque has stablizie and my penis is not flexibile. I can still masturebate but sex is quite difficult and uncomfortable. I wonder whether treatments like pentox will still be effective for me at this stage? I have been taking vitamin E but it has shown no positive effects so far. I will not consider surgery at this moment because i am waiting and hoping that Xiaflex will help me soften the fibrosis in the near future.
thanks.
I started taking pentox many years after developing peyronie's, and believe that it was been of help to me. It's hard to know what specifically is the source of improvement, but it has been an aspect of my treatment that I've stuck with for a significant length of time. It's definitely worth a shot, though be sure to take it for six months + before drawing any conclusions as to its effectiveness.
Quote from: George999 on March 08, 2010, 11:05:50 PM
Quote from: snowydreams on March 08, 2010, 03:51:44 PM
How does Pentox help Peyronie's and can it improve erectile function?
In multiple ways. For example, it blocks TFG-beta1, an immune system cytokine known to play a role in aggravating Peyronie's. TGF-beta1 is normally utilized by the body in the process of breaking down scar tissue. In the case of Peyronie's it becomes overactive and damages adjacent healthy tissue in the process, thus adding to, rather than reducing scar tissue. Pentox subdues TGF-beta1 activity. Additionally, Pentox makes red blood cells more flexible so they can better oxygenate damaged tissues. Pentox likely has other ways of benefiting guys with Peyronie's, but these are the two best known benefits. I took Pentox for a couple of years and made sure I took it only with meals. It was extremely helpful to me and I had almost no side effects. At this point I am off it since my supply ran out and Dr Lue did not renew my prescription. I have been off it for over a month now and my Peyronie's has not become active again and shows no signs of doing so at this point. I am very grateful to Dr Lue for prescribing it for me and am convinced that it has saved me a lot of pain and further damage. I highly recommend it.
Quote from: snowydreams on March 08, 2010, 03:51:44 PM
Are there any major side effects associated with it and have any of the board members who have used it experienced side effects, especially cardiovascular ones?
Each patient, of course, reacts differently. But most of the reported side effects are gastro intestinal or sleep issues and none are serious. Most people tolerate Pentox well and it has a very long track record of safe use.
Quote from: snowydreams on March 08, 2010, 03:51:44 PM
I have been taking Vitamin E 800 IU for quite some time and have experienced some mild pain in my sinuses and noticed blood in my phlegm several times in the last few months. Is it true that excessive use of Vitamin E can cause hemorrhagic stroke and what is the recommended dosage? Should I get tested for Vitamin E in my blood?
Vitamin E tends to cause bleeding because it counteracts the effects of Vitamin K. If you are not taking a prescription blood thinner, you will probably find that taking a little bit of Vitamin K on a regular basis will stop any Vitamin E bleeding effect you might be experiencing.
DISCLAIMER: I am just trying to provide you with information. I am not a doctor and would suggest you discuss these issues with your doctor before proceeding further. Your pharmacist might also be able to give you expert advice on these issues. - George
George,
I'm curious now as to the benefit of pentox. You mention how pentox blocks TGFBeta-1 which is used by the body to break down scar tissue and in the case of peyronies it is over expressed. Is this true with all cases of peyronies?
I'm wondering if pentox could preserve the scar tissue. If the body uses TGFBeta-1 to break down scar tissue and pentox blocks that wouldn't this be the case? From everything I've been told by the doctors I have seen and from what I have read, a small percentage of peyronies cases have spontaneous regression. It makes sense that if someone were to get a injury to the penis scar tissue could form and from reading about scar tissue it has the life cycle of 12-18 months and the body uses this to fortify the wound until it can be healed, then as time goes on the scar tissue reduces or fades I'm assuming due to TGFBeta-1. But if this is blocked would it rule out any spontaneous regression assuming your in that small percentage of men? It makes sense to use pentox in men where peyronies is progressing but what if one has never had progression since first noticing it?
The general observation has been that with Pentoxifylline things get better. That has been the case until recently. Now there is a research study comparing the outcomes of those who receive Pentoxifylline with those who don't. Those who received Pentoxifylline did markedly better than those who didn't. It is certainly possible that a small percentage would have done better without it, but overall it greatly improves outcomes. If you ignore this information, you are playing against the odds. Such is the case with all established medications. One has to weigh the risk benefit ratio. In the case of Pentoxifylline for Peyronie's, the benefits greatly outweigh the risks, since Pentoxifylline is very benign in terms of interactions and side effects. And you have to realize that it doesn't block TGF-beta1 entirely, it just throttles it back. - George
Oh ok I thought it blocked it entirely. I am currently taking pentox and was just curious when I read your comment. Thanks for the info though.
Thought this was interesting guys, have a read:
http://www.healthscout.com/news/1/642360/main.html
Quote from: ComeBacKid on May 22, 2011, 12:57:37 AM
Thought this was interesting guys, have a read:
http://www.healthscout.com/news/1/642360/main.html
I think I read this before, but it's a great article. For years I'm pretty sure that I had a vitamin D deficiency. I'm not really one to go out in the sun and few foods here are fortified with vitamin D.
As my Peyronie's approaches 1 year, the pain is mostly gone, but the deformation is progressing. It might still be early enough that oral therapies might help.
I have access to Potaba, Pentox, and CoQ10. Each has support from a single recent double blind study, respectively: Weidner et al. (2005); Safarinejad et al. (2009); Safarinejad (2010). They each seem to provide some help to some men.
What is known, or predicted, about taking two, or all three of them? Safarinejad has stated (personal communication) that there isn't any negative interaction between Pentox and CoQ10. Synergisms aside, it's good news if Pentox + CoQ10 on a particular patient is at least as effective as Pentox alone or CoQ10 alone on that patient.
Are there any reports on interactions between Potaba and the other two? Do the physiological mechanisms suggest any negative interactions? It would be a pity to achieve less with more.
I, personally, was on Pentox for many months when the Safarinejad CoQ10 study came out. I immediately started Ubiquinol 100mg 3X per day in addition to continuing Pentox 400mg 3X per day. At that point I obtained obvious additional efficacy to the point that a long running issue was solved. In effect, Pentox was protecting me from chronic inflammatory pain, but not acute pain caused by any minor trauma. With the addition of Ubiquinol, I suddenly became bullet proof in terms of pain. The effect was dramatic and obvious. At this point I am off Pentox for some time now, but continue with Ubiquinol. Peyronie's pain has never returned and physical deformity issue is gradually improving.
George999: That's encouraging info. May I ask why you discontinued Pentox?
I'm now taking Potaba 4g 3x per day + Pentox 400mg 2x per day + CoQ10 100mg 2x per day (+ vitamin E 1200IU + Tadalafil 2.5mg + L-Arginine 1500mg, but these are generally regarded as secondary). The high Potaba dose is tough on the gut. Every Potaba study from 1970 to 2005 has used that same dose. Does anyone here know why? And the main question, whether adding Potaba to the known compatible combo of Pentox and CoQ10 is counterproductive, remains.
Quote from: ppain on October 08, 2011, 10:28:18 PM
George999: That's encouraging info. May I ask why you discontinued Pentox?
I'm now taking Potaba 4g 3x per day + Pentox 400mg 2x per day + CoQ10 100mg 2x per day (+ vitamin E 1200IU + Tadalafil 2.5mg + L-Arginine 1500mg, but these are generally regarded as secondary). The high Potaba dose is tough on the gut. Every Potaba study from 1970 to 2005 has used that same dose. Does anyone here know why? And the main question, whether adding Potaba to the known compatible combo of Pentox and CoQ10 is counterproductive, remains.
ppain,
I did the potaba, pentox, and coq10 as you are. I had no troubles with my gut but my liver emzymes came up high on blood tests after being on the potaba for about 5-6 months. I discontinued the potaba after that test and a month later had another blood test that showed my emzyme levels to be normal again. I also just had another blood test done to confirm it is still normal just waiting to hear back about the results.
I discontinued Pentoxifylline because I was finally able to discontinue it without having a flareup as a result. I prefer not to take Pentox if I don't have to because it does have minor side effects AND because it does have the potential to interact with some other drugs. AND it is one less pill I have to take and I don't want to have to take any more pills than necessary. I am continuing the Ubiquinol, on the other hand, because it is easier on the body and has other benefits besides just Peyronie's. In any case, at this point the "fire" seems to gone out of my Peyronie's problem and it is in retreat.
I really don't see why Potaba would interact negatively with any of the others, but who knows? As rd points out, Potaba, like other Vitamin B family members, DOES carry a liver risk at mega dosages and Potaba is typically prescribed in HUGE dosages for Peyronie's. ANY patient on Potaba should be getting REGULAR liver enzyme tests done. All the things typical of Potaba are why I have never been willing to take Potaba even though my uro was pushing on me to take it. At this point I think I have pretty much convinced him that Pentox is better and he is now recommending Pentox to his patients.
- George
rd: thank you for the warning. "All patients taking POTABA-GLENWOOD powder should undergo liver functioning testing at least every 4 weeks" printed on the package insert was missed by me, my urologist, and my GP. I'll get tested fast.
I've been taking Potaba for 11 months almost since onset. I cut the daily dose from 12g to 4g about 3 months ago and new deformity developed about 1 month ago. Perhaps coincidence, perhaps not.
I'm curious whether your Potaba+Pentox+CoQ10 regimen was purely your own or from a doctor.
Quote from: ppain on October 09, 2011, 06:41:36 PM
rd: thank you for the warning. "All patients taking POTABA-GLENWOOD powder should undergo liver functioning testing at least every 4 weeks" printed on the package insert was missed by me, my urologist, and my GP. I'll get tested fast.
I've been taking Potaba for 11 months almost since onset. I cut the daily dose from 12g to 4g about 3 months ago and new deformity developed about 1 month ago. Perhaps coincidence, perhaps not.
I'm curious whether your Potaba+Pentox+CoQ10 regimen was purely your own or from a doctor.
I just figured anything that had any shred of evidence I would use. I could only get a rx for Potaba, then found a place online where I could get the pentox, and of course I didn't need one for COQ10. My uro wanted me to try the Potaba so I did. He said he didn't feel comfortable giving me Pentox even though he was familiar with doctor Lue and his methods. So when I found a sorce for it I added it to my treatments. I figured I'd throw everything but the kitchen sink at it. Right now I have stopped everything but the coq10 because I had the stem cell treatment and am still waiting to see what results come from it with out anything else in the mix.
rd, I wish you all the best on the stem cell treatment. I know they are receiving some remarkable results with that for some issues, perhaps not so good for others. Hopefully we get some positive surprises with Peyronie's. That would be wonderful for all of us. I had not seen your comments on the stem cell stuff before, but just now caught it with your previous comment and went back and reviewed your previous comments as a result. Thanks for sharing all of this. But sure to keep us updated as things (hopefully) progress. - George
Sorry George to be indiscrete, but specially you who have been a great Pentox advocate (I actually started Pentox after reading your posts) getting off pentox, It would be interesting for me to get a little supplement of information.
Quote from: George999 on October 09, 2011, 11:33:22 AM
I discontinued Pentoxifylline because I was finally able to discontinue it without having a flareup as a result. I prefer not to take Pentox if I don't have to because it does have minor side effects
with "flareup" do you meen pain or curvature?
did you experience the common side effects (stomach etc...) or did it have specific ones for you?
Quote from: George999 on October 09, 2011, 11:33:22 AM
AND because it does have the potential to interact with some other drugs.
Did you experience some interaction? I meen with supplements or other drugs we take against Peyronies Disease? Or with other drugs outside the common Peyronies Disease medication?
Quote from: George999 on October 09, 2011, 11:33:22 AM
AND it is one less pill I have to take and I don't want to have to take any more pills than necessary.
100% agree with that one...
Sorry again if the questions are indiscrete, but i was just very curious.
Luc
Well, the unfortunate news is that after over six months off of Pentox and no problems I have finally had a minor flareup. By flareup, I mean either pain or deformity, anything that would indicate Peyronie's activity. In my case it is a sudden onset of low level pain. So ... as of last night, I am now back on Pentox. I have never had any problem myself with drug interaction with Pentox, but it does mean you have to be more careful with blood thinners and that sort of thing and the potential for interactions is always there which is just another reason why I would rather be off of it. I also suspect it might be raising my BP just a bit. So hope that is a good enough answer. I have always been determined that if I ever had a recurrence of the problem, I would get back on Pentox right away. Unfortunately, that point in time has arrived, but it has been a nice break in the mean time. What I am noticing from lab tests is that my immune system seems to be recovering in that my white cell counts are headed higher than they have been for a long time. In fact, the last time I had neutrophil counts this high was back in November of 2007. That very well could have something to do with this. I took some Astragulus to deal with a low neutrophil count recently and also have been taking large amounts of DHEA to try to improve my hormone levels. Either or both could be altering my metabolic environment enough to cause a hopefully temporary recurrence of Peyronie's inflammation. - George
george - should you increase the ubiquinol then??
Restarting Pentoxifylline stopped the pain in no time. It looks like I will have to spend another year or so on it and see how it goes. If things stay better for a while, I will probably try stopping it again later on. In the mean time, I really see no need to increase Ubiquinol. Its very expensive and there is no evidence at this point that more than 300mg/day is of any benefit. - George
ive just been email comeback kid and he swears by pentox - ive just got an extra 12 months supply and im going to really take more than i have been - i was only taking 1 tab in the morning and thats it - from now on its x 3 per day.
also ive noticed that glyocarn kind of makes my flaccid state seem normal - anyone tried this stuff
I will not merge this topic with others because it contains almost everything that oral treatments can be.
It has also 81 pages and I don't want to add more.
James
James, this was the original catchall thread for Oral Treatments before more diversity was introduced via sub topics. This WAS originally the only "Oral Treatments for Peyronie's Disease" thread. - George
This is my second day on here, feel very lucky finding this site yesterday. I only wish I could access all of this at work, but you know net nannies.
I have seen many comments of guys taking Viagra or cialis in small doses on a regular basis to ensure daily erections. Is that to combat ED? I have not experienced ED, other than my psyching myself out. I still wake up with morning wood, jerk off at night, is that all sufficient? Also, I bought a bottle of 1000mg L-Arginine, is that a good start? Can't get in to see my GP until June, so no Pentox. I don't want to start that until I speak with her as it is a thinner. So for now I think I'll stick with the supplement/nonprescription route.
Pumps - I also saw a lot of talk about pumps, is that more for the individual who has a curve? I have no curve, only a slight hourglass behind the glans above and below. I can actually feel the corpora cavernosa sort of cinched at the end, which is why my glans doesn't fully engorge. When flaccid I feel a little oblong nodule behind the glans just left of center.
Is there anyone else in Southern California/Long Beach area that can recommend another urologist? One that will do more than confirm my condition, tell me there's nothing that can be done with it, and then come back in 6 months? I got some good advice on 2 doctors, a Dr Boyd at USC, and Wilson in Indio, unfortunately they don't show on my coverage list.
Thanks in advance,
Rob
In my opinion L-Arginine is a good start.
The VED is not just to correct curvature, is also to maintain healthy blood flow into your penis.
Regarding doctor I will quot Skjaldborg:
QuoteAlso, since you are in California, get a referral from your GP or urologist to see specialist urologist Dr. Tom F. Lue at UCSF. He is one of the premier urologists on Peyronie's and my appointment with him and his staff was a turning point for me.
James
Willfly,
Many guys have Peyronies without any ED issues. But there are some who have blood flow issues to the point that ED can be a problem. So yes some are taking Viagra or Cialis in small doses to help with this or to improve blood flow.
Cialis and Viagra also stop TGF-Beta, a protein associated with inflammation and scar tissue formation in addition to ED help.
-Skjaldborg
Hi everyone,
I am the Peyronies Disease and I begun the oral treatment just a month ago. I met several specialists and some of the them suggested to me to simply take POTABA plus the VIT E: others also told to me to take the PENTOX. Also in light to the outcomes of this forum this is my current prescription:
POTABA 6000mg/day
PENTOX 800mg/day
VIT E 800mg/day (alpha form)
I have a question: since it was pointed out that POTABA can produce many side effects on the stomach, I have never read about the possibility to use a stomach protector like PANTOPAN (PANTOPRAZOLE SODIUM SESQUIHYDRATE). Is there anyone using it? Is there any side effect using it as a stomach protector?
Thanks a lot and may God bless us
Yes I read that about potaba also. And there are no studies saying potaba gives any results (maybe with pain, but certainly not for the rest)
As to pentox, the effects on stomach exist also, but are much less strong (at least thats what I read)
Taking pentox with food seems to be good enough for most of us.
Usually most people here take 3x400 mg pentox, (so one more than you do) and have no side effects. The few that do have side effects, usually take 800mg and with food acceptance is good.
But no one I know is taking pentox AND Potaba.
I would start pentox immediately, with no stomach protector, during meals. but take 3x 400mg.
And if you tolerate it well, add the Potaba. If you get problems, then you can either stop potaba or add a stomach protector.
If I had the choice between potaba and pentox, I would go for the pentox only!!!
Luc
Hi Luciano,
so are you telling me that you have never heard about the combined use of potaba and pentox? I have met three different specialists and practically two of them suggested to combine it. The first two told me to take 800mg/day vit E plus 600mg potaba and 800 pentox. The third one only prescribed me a massive dose of potaba (6000mg) and vit E (800mg). What I want to do is to combine the potaba with 800 or 1200 mg of pentox. I will inform the last specialist of this but if there are no problems to combine them, I would like to do it. I will let you know the answer of the last specialist. What do you think?
Thanks
another_one
I would like to reinforce Luciano opinion that not too many people are using Potaba today.
To get a good picture regarding Potaba read the board of Oral Treatments for Peyronie's Disease, POTABA - effectiveness, interaction & questions topic. It will help you deciding what to do.
I will quote newguy post
QuotePOTABA - effectiveness, interaction & questions
on November 06, 2009.
QuoteI doubt this thread will see much action, as potaba is an old treatment and one of the most difficult to tolerate. However, it's useful for it to have its own area for discussion, to stop is clogging up other threads.
I have to mention also the have one guy (from reading the above mentioned topic) that Potaba & Pentox combination helped him.
James
Hi James,
the reason because I don't want to stop potaba is that all the specialists suggested to me to use it: depending on the specialist, it just change the amount of prescribed potaba. On the other hand, the papers/contribution read in the forum, plus also the suggestions of many specialists would suggest to take pentox. That is why I would like to follow all advices and take both, minimizing the side effects for my stomach. Consequently in order to save my stomach I wanted to know if there were side effects to combine a stomach protector with the potaba and pentox.
Thanks everybody
OK, I understand your approach.
Maybe because my age or bad experience I am "over" carefull mixing things. Maybe you should begin with small doses.
Myself, even with Pentox I begin one daily and stopping 100mg Aspirin for one week.
Wish you success with your treatment, don't forget to update us how is going.
James
Sure, I will do it!
I wish you the best!
I read on the Peyronies Disease website that ALC has some benefit, yet I seldom see any mention of it here in the forums. Am I just missing it or is ALC just old news?
No, Acetyl L-Carnitine is indeed one of the recommended supplements and one of the few that have solid research backing them. CoQ10/Ubiquinol is another, and Pentox of course is the preferred medication.
Although I am a woman, I still want to comment. My husband showed the symptoms of Peyronie's suddenly at the age of 64 (since 2 years, that is). What I want to know of you men is a) does it hurt? and b) does it affect your sex life? In our case, it doesn't hurt our sex life once he had overcome the stage of "hey, I don't want her to see this." I don't know about any pain or discomfort. His urologist prescribed him Cyalis and Vit.E and after one year of treatment there is a small improvement. Take care: some medication used for this illness may also lower general bloodpressure.
IMHO, the answers to your questions are; yes and yes, but also no and no. It all depends on where you are with Peyronies Disease.
At first, in the acute stage it was painful; but now, in the chronic phase of the disease, it is not painful. If your husband has had Peyronies Disease for 2 years, there is a good chance he is past the painful stage. But, there are men of this forum that will probably feel differently.
Peyronies Disease is a very strange disease and as the old saying goes, "results may vary."
GS
What GS said is true. This affects every man differently. I had no pain at all and ended up with a 70 degree curve. So to answer your questions.
1. Everyone is different. Some men had no pain at all with this while others experience pain even from early onset.
2. Depends on the degree of severity. Many men have to face the emotional and mental impact of "Why did this happen to me". But the reality is that men with less than moderate curves or deformity are able to perofrm sexually without any problem. While others have such curvature that intercourse can be impossible or painful.
I don't know if it can help with Peyronies, but for inflammation for sure, so it may be connected.
A small fall with my motorbike a few days ago, I had a small hit at my feet. After a few days, all my left feet was inflamed, very swollen, very painful, yesterday I was not able to walk. After taking 2 capsules of a local herbal medication noon and night, wake up today with almost no pain and almost not swollen feet.
The name is "Montalin". I am continuing to take it, hope all will gone shortly.
On the box is written that will help with stiff joints, uric acid deposits and many other inflammation related problems.
James
James,
Just read a little about the product "Montalin" on the net and it had a warning so I would be careful with that. I don't know if it's the one, but anyway here is one of the links with the warnings: Foreign Product Alert: MONTALIN Jamu Pegal Linu Dan Asam Urat - Recalls & alerts - Healthy Canadians Website (http://healthycanadians.gc.ca/recall-alert-rappel-avis/hc-sc/2014/37715a-eng.php)
MiniMe
Thanks for the alert. I was not aware of it.
On the pack have a list of the ingredients that are 95% and "Lain lain" that mean "others" is 5 %.
In the Singaporean alert is written that this "Jamu" includes Piroxicam and Paracetamol. So in any case is in a very small quantity.
Also I will take it not for more than 3 days, twice a day. In the past I use it twice, each time just one capsule that helped immediately and the local people are saying not to take it if the inflammation passed.
Thanks again for the alert, I will take it in consideration.
James
Hi guys. Although, everyone has a different progress in Peryronies and supplements, can someone that is been cured, share with us his way of doing it?
Dias
I doubt if you will get some clear answers to your question.
The only way to find out is to start reading the forum and to understand what others have done and the level of they success.
I would like to say one more thing:
If some treatment works on someone, is not a guaranty that it will work on all. This is Peyronies!!!
James
Dias, welcome to the forum.
Unfortunately, I'm afraid your question is deceptively simply, but virtually unanswerable. I doubt you will find one person who claims to have been "cured" of Peyronie's and can prove this by testing that shows complete disappearance/healing of scar tissue. What you will find, however, are guys who have seen improvements to the point that Peyronies Disease no longer causes them any real problems, and even guys who have seen their curvature or distortion improve to an almost to pre-Peyronies Disease state.
However, as you might expect, guys who truly have no problem with their Peyronies Disease anymore don't frequent the forum much, and who can blame them, right? They're back to living their lives free of this monkey on their back, so why occupy your time with it online.
Additionally, amongst guys who have seen such improvement, you probably won't find two who practiced the same course of treatment. Some took this supplement, some took that, some used a VED, some didn't, Pentox, etc., etc., etc. And some, I'd wager, improved by doing absolutely nothing.
It's a mysterious disease with ten million different stories, each unique in their own way. I'm afraid your well-intentioned question will find no ready answer here, or at least no actionable answer, for even if a guy feels he's been "cured" of Peyronies Disease, he can only believe it was because of what he was treating himself with - he could never prove it.
Bottom line - you have to invest the time in reading what's available on this forum, choosing your own course, and setting about your own journey. And on that journey, I wish you the best!
Regards,
Nemo
Thanks a lot Nemo and James, I knew this answer was coming. I am just hoping whoever from this site gets cured, not to forget us and come back at least one last time and write in bold letters his success medicine.
We need each other
Cheers guys.
I read on a different topic that nsaids such as ibuprofen can worsen peyronies because it stops inflammation and that's how the body heals itself. Does anybody have any info on this and whether I should take it or not.