This topic is for Peyronies Disease discussions on alternative treatments that do not fit in other categories.
I have a treatment idea and don't know the best place to post it. I thought maybe a new post but I can't do that :-) So I have believed for quite some time that there is serious vallidity to the idea of enzyme therapy. Taken internally it make perfect sense. So I was thinking what about a topical preperation. I know that DMSO adn emu oil are both none to be great carrier agents. They are supposed to be two of the very few that will carry through all seven tissue layers. Maybe there is somthing better, I don't know. Could I take a mortar and pestal and just gring anzymes to a fine powder and mix with one of these two ? The problem I see is thant powder won't mix well with oil and I read someplace that if you premix something with DMSO it will go bad. I'm sure that a blend of proteolytic and systemic enymes with co-enzymes (they need eachother to work) in a topical preperation would be helpful. I don't think it's a cure but it could help. I just don't know squat about compounding pharmacueticals or things of the like.
This sound like dmso based topics. There is also some material there you may find interesting to go with your ideas. RZZ and Barry F have done some good research on dmso. They might be able to help.
The DMSO portion of my idea is only one of the ideas, that's why I put in here. I haven't really seen what I'm looking for man I wish I didn't drop out of chemestry
Flexor,
I am in general agreement with what you say. In fact I have a copy of the "Leriche Technique" obtained through the NIH. Unfortunately it's in french so it's been of little use to me.
Yes, there is a lot of this type of research data out there, and it becomes frustrating trying to follow each hopeful path. You can go in so many directions that you become so splintered you end up getting nothing done.
At the PDC we are trying to orginize our efforts into a step by step approach. As a first step it was determined to address the issue of Peyronies Disease being an orphan disease, and this is not a cut and dried matter of good or bad. Being a rare disease limits research, but if it has orphan status funding is available through the "Rare Disease Act of 2002" and an earlier act in 1986. The question becomes one of numbers, so if you prove that Peyronies Disease occurs in say 400,000 men the drug companys will perhaps see this as too small a number for a reasonable return for research. In that case it may be better to have Peyronies Disease retain it's orphan status. If we are talking 4,000,000 men than you have a different picture. There are other questions. Cystic fibrosis is a high profile disease, and it's an orphan disease affecting around 30,000 people, but because it's high profile will it and other high profile diseases push Peyronies Disease aside.
It's complicated, but we are talking to people to make sure we know the issue well before lobbying for any particular position.
Larry H
Larry,
I don't know how long the report is but you can translate from French to English on a free website.
http://babelfish.altavista.com/ This will translate from one language to another and you just have to copy and paste the text. The drawback is you can only copy and paste about 150 words at a time. If it is a long report it would probably be too tedious to pursue.
FYI
Glenn
Quote from: Larry H on September 16, 2005, 05:47:32 PM
Flexor,
In fact I have a copy of the "Leriche Technique" obtained through the NIH. Unfortunately it's in french so it's been of little use to me.
Larry H
Glenn,
Thanks, that's a very good idea and I'll give it a try.
Thanks Much,
Larry
31 from asia.
RECENTLY, i have started to do something about it after gathering
information from the net:
1. i start to take cochicine, and vitamin E.
2. i self made some topical ointment:
actually PLB's verapmil formula is not a sercret, though it is
patent, the content is list in the patent. it is PLO based.
Since i have no channel to buy those ingredient i know from the
patent, say (Fluronic gel 20, etc). i self made the ointment as
below.
a. verapmil pill - ground them into powder
b. dissolve in volka ( with ethanol and water as solvent)
c. lecithin, cod liver oil, flaxseed oil, vit E (lecithin as
penetration enhancer and emulsifier, cod liver oil and flaxseed oil
for their poly un saturated fatty acids, like LA, ALA, OA which are
also penetration enhancer). No DMSO, as i couldn't source them.
d. some vinegar to reduce pH, verapmil has high solubility in ow pH
e. a few drop of lemon and methol essential oil ( limonene and
mehtol as penetrative enhancer too)
I apply the ointment (watery, but dry quickly, probably due to
ethanol evaporation) twice daily. have to shake before use cause the
oil and water base don't mix well.
Not sure of the result. but just try for a week.... hope there is
miracle...
Anyone can give me advice on
-comments on ointment formular?
MAny thanks
This something I found on the net by a doctor william wong phd sports medicine:
To break up fibrosis( binding scar tissue)
PC Ligament Stretch - Work yourself up into a semi erect (Tumescent) state. Create a ring around the penis with your thumb and middle finger. Starting at the pelvis side of the shaft, slightly tighten the finger ring and draw it out towards the head (glans penis). This will pull the blood towards the head and make it extremely hard and full. Hold this position for 5 to 10 seconds and while holding the ring just before the head pull slowly and gently away from you as if you're lengthening the shaft. Do 20 reps, each rep with a 5 to 10 second hold for 5 sets. (Don't make the ring too tight, and don't yank or tug)! This exercise will not only stretch the PC ligament over time but it also help to break up fibrosis (binding scar type tissue) inside the spongy cavity that prevents it's full engorgement and expansion with blood.
maybe its worth a try.. let me know if it works for anyone?
Rzz posted something back in August about Needle Atrophy. He mentioned two doctors in Florida that are performing this procedure. Does anyone have info on this?
Thanks,
The technique is Needle Aponeurotomy. It is used for the fibrous build-up on the palm of the hand in Dupuytren's Contracture. The surgeon uses a needle to go just under the skin to tear at the plaque and break it up, so that the palm can straighten.
A similar technique (Leriche technique) has been reported from France, with high success rates. An erection is artificially induced, and the neddle inserted just under the skin to tear the plaque so that the penis can straighten. 'Sucess is' defined as whether the patient thinks it a success, or the ability to resume sexual intercourse. Of ten men in the experiment, after three months, three reported 'cured' and two reported satisfied. The remaining five returned for a further session, after which three of them were satisfied, and two were so advanced that they went on to surgery, and the treatment did not impede the surgery.
An interesting side issue, which may cheer up Old Man, is that they attribute the high success rate to the requirement that the patient returns rapidly to sexual intercourse after the treatment, or failing this, the use of a VED - the point presumably being to produce erections that stop the torn plaque from knitting back.
I've not found anyone outside France doing this, though it makes sense. Are there doctors in Florida doing this?
I secured a copy of the Leriche paper which was in French. Flexor sent me a private note and offered to have the paper translated. I sent it to him and he returned the translation, and I want to thank him for his time and effort.
Barry and I did a little background checking as to why this treatment has not been discussed in more detail, and why we have heard nothing about. We really don't have answers to those questions as yet. I'm sending the paper on to Hawk for whatever action he wishes. Flexor did sum it up nicely.
Larry H
Need Aponevrotomy (NA) has been performed on Dupuytren's Contractures for decades in Europe with good results. It hasn't been seen in the U.S. until recently; conventional hand surgeons dismissed it. It's now being done by about half a dozen U.S. MDs and patients are lining up around the block based on word-of-mouth advertising alone. I have DC myself and have had 2 conventional surgeries. Next time I need a correction, I'll be having NA instead.
It doesn't work in all cases; success depends on how the contracture is attached to the surrounding tissue. In most the cases, results are excellent. In all cases, no harm is done. I've wondered for a long time if something similar could be done for Peyronie's and maybe the answer is yes.
For DC, the NA technique doesn't sever the bands, just weakens them until they can be snapped by forcibly straightening the fingers. So for Peyronie's the key is to induce an erection that stretches the fibrotic tissue tightly, then a special needle is used to weaken it until, hopefully, it tears.
As with DC, those of us in the U.S. might be encountering strong initial resistance from surgeons who refuse to believe that anything so simple, non-invasive and - yes - inexpensive, can actually work. But with DC, the battle is being won by NA.
I wasn't aware that anyone was trying this for Peyronie's. Based on the history of NA for DC, this may be very good news. We may end up having to go to France for it, however.
Regarding earlier discussion on iontophoresis, it has been using verapimil. Has anyone used a steriod cream with iontophoresis? If so, any success?
Hi !
Thank you very much for your helpful response.
Here are the following Peyronies Disease treatment I will be trying:
Peyronies Disease Plan
Neprinol 3x3 pills daily for 4 weeks but start at 2-3 pills a day for 1-2weeks
Vitamin E Gamma+ Intergral E Daily
Vitamin C Natural Daily (2000mg-4000mg daily)
Castol E Oil to be massaged on scars daily
MSM 2000-4000mg daily for several months then reduce to 1-2grams daily
DMSO 4oz Daily massage twice with Castor E oil
What do you think? Have you tried any of them? What has your experience been like?
Also I take many herbs from a Dr.Lin and use his vip heat massage which I do
daily twice. Also I take Dr.Lins natural Prostaglandin E1 Therapy. This helps
to soften the scars but so far hasnt eliminated it.
Yes ! I will try the infrared formula as I have tried something similar recommended
by Dr.Lin which has really helped with Peyronies Disease.
Cheers !
I will only comment that Vitamin C and MSM both have warning from different sources that they could worsen Peyronies Disease. Vitamin C is a huge component in stepping up collagen production. It is also documented in studies to worsen inflamation and formation of osteo-arthritis.
Quote from: Hawk on November 17, 2005, 10:53:28 PM
I will only comment that Vitamin C and MSM both have warning from different sources that they could worsen Peyronies Disease. Vitamin C is a huge component in stepping up collagen production. It is also documented in studies to worsen inflamation and formation of osteo-arthritis.
Hi Hawk!
Thanks for the very warm welcome :)
mmm so does anyone have any positive experiences with MSM or vitamin C?
Also anyone taking Neprinol here?
Im wondering if everyone could put one treatment as the best one, which would it be?
If any of you could point out which supplement, herb, method has worked best for you to
ease down Peyronies Disease please let us know.
Cheers!
Quote from: learn4life on November 18, 2005, 11:11:13 PM
Quote from: Hawk on November 17, 2005, 10:53:28 PM
Im wondering if everyone could put one treatment as the best one, which would it be?
If any of you could point out which supplement, herb, method has worked best for you to ease down Peyronies Disease please let us know.
If I HAD to give one, I would say L-Carnitine but I consider L-Arginine just as helpful if not better.
Quote from: learn4life on November 18, 2005, 11:11:13 PM
Im wondering if everyone could put one treatment as the best one, which would it be?
If any of you could point out which supplement, herb, method has worked best for you to
ease down Peyronies Disease please let us know.
I'm never brief. My recommendation would depend on whether you have Peyronies Disease with strong erections or Peyronies Disease with some degree of ED I have 3
Acetyl L Carnitine 2000 - 3000mg daily
VED (Vacuum Erection Device)
HEAT (In the form of hot water localized to just the penis)
I would place less emphasis on the VED for someone that gets full scale rigid erections
Hi !
Thank you Hawk and Joshua for your very helpful responses.
I wonder if anyone here has overcame Peyronies Disease fully?
Actually my Peyronies Disease is quite severe as from the base to the glans neck there are very
deep and hard plague modules all over the entire penis. The entire right side goes numb if I dont take
my herbs, supplements and do daily vip heat cream massages.
I do take L-Arginine as suggested by Dr.Lin but I take 4000mg. I read you had advise
it is best to take 5000mg? Why is this if true?
Also I take Fish oil, Borage Oil, Choline, Same, Neprinol, L-Tyrosine, 5htp+Gaba,
Many different types of Herbs plus herbal teas.
I do a twice a day massage on the penile tissues with Vip Cream and also
Evening Primose Oil/ Borage oil to boost the Prostaglandin E1 in the penile tissues.
This helps to soften the scars. It works as whenever I decide to stop for a few days
the scars get much harder and restricts penile size.
L-Carnitine: How does this help Peyronies Disease?
Also what is VED?
I feel the heat method helps with Peyronies Disease alot whether it is water or or even a warm towel.
Im going to give the infrared light as suggested by Joshua. Iam going to add a vip cream
massage while under the infrared light to let the cream penetrate deeper to
soften the scars. What do you guys think of this?
If anyone is interested I got Peyronies Disease from overmasturbating since 11 twice daily for years while
jelking with as much force generated by my hand tightly squeezed for many months.
Hanging weights on base. Also tying several elastic bands on the base for 1-2 hours.
I suffer from precum ozzing as well, although not as bad as before. Anyone else have this?
Thansk guys for the awesome support as it is great to be able to speak about Peyronies Disease
with people :)
Cheers
Hi folks !
4:30am here in the Uk.
I got a good question.
How long would you try a cure/solution for?
I have just started to take Neprinol and I will test it for 1 and half months as it doesnt
come cheap. 170usd inc shipping for 1months supply.
I think 1-2 months is good time to test a cure. What do you guys think?
Just a comment on Dupuytren's.
Several years ago, a ridge of fibrin/plaque appeared on my right hand across the palm in line with my ring finger. I showed it to my doctor, whos said it was a bursa - an escape of fluid fom the tendon. The plaque got worse, and then the same thing happened on my left hand. However, there was no pain, I had no curvature of the finger, but I could not bend my ring fingers back. So it was just unsightly, and did not bother me.
Then I developed Peyronies Disease. When I saw the uro, I showed him my hands, and he confirmed that this was DC.
As part of my attempt to sort out the Peyronies Disease, I started taking Vitalzym. This involves a highish level (5 pills three times a day, I think) for five weeks, and then dropping down to an activation level.
After four weeks, I suddenly noticed that the plaque on my hands had virtually disappeared. Since I wasn't expecting it, I wasn't looking for it, so I don't know if it happened over a few days or a few weeks.
The present position with DC is that the plaque is slightly there, but not really noticeable. The tendons leading to the ring finger are taut. I still can't bend my finger back, but definitely an improvement.
Also, some years ago, my optician diagnosed high eye pressure - potentially dangerous as it can lead to glaucoma. After lots of hospital tests they decided that I was at the high end of 'normal', but to have an annual test just to make sure it didn't rise any further. So I have done that for several years, and there has been no change in the pressure. About three months after starting the Vitalzym, I had my annual test, and the optician was a bit taken aback to find that the eye pressure had fallen. I put this down to the Vitalzym.
I am still taking the enzymes because on the whole I feel better with them than without, but I am sorry to say that after that promising start, and almost a year of taking it, it has had no effect on the Peyronies Disease.
Quote from: learn4life on November 19, 2005, 11:30:47 PM
How long would you try a cure/solution for?
I have just started to take Neprinol and I will test it for 1 and half months as it doesnt
come cheap. 170usd inc shipping for 1months supply.
I think 1-2 months is good time to test a cure. What do you guys think?
First, great to have a new posting member and another member from European side of the pond. I think no one has answered because it is anyone's guess. In addition to that, it probably depends on the treatment. I try several things at once. I is confusing as far as research is concerned because if you get results you don't know which one helped, if the combination helped, or the old standby, that it was spontaneous improvement.
I guess generally, I would try something a minimum of 2 months and I think the first indicator may be a reduction in pain if you have some measurable pain. If stopping the the trial treatment and restarting in seems connected with pain it is a pretty good piece of evidence that it is helping, but still not proof.
One last point, sadly, I think it is very safe to say that we test possible treatments not cures.
Thanks Hawk !
Its always good to hear from ya :)
Cheers !
All:
Has anyone used iontophoresis with a steroidal cream? If so, any results? I will have to go to a physical therapy facility to receive ion. It's kind of awkward getting that kind of therapy on your penis.
Hawk : I have not heard of MSM being bad for Peyronies Disease. Do you recall the sorce ?
learn4life : For me The time frame I go by is 90 days. My thought is that if something is going to help you should see something in 90 days. Even a small change. Also I have been using Neprinol with MSM for some time now and it has been working well. However I have also been using the thacker's formula. So I am in the process now of trying to zero in on which one has had the most benefit because the Neprinol is really expensive .
Nick,
First, Welcome back from the land of the missing. :)
I have run across the MSM, Vitamin C, Glucosamine warning a few times from doctors (on the internet). I have no solid evidence they are harmful and I think it may be theory due to collagen boosting properties they share with L- Lysine.
Interestingly enough, the topic "A New Theory" by a non-medical person, is very interesting. He also mentions MSM and/or Glucosamine.
Since I never saw evidence or even theory that it helps Peyronies Disease, I avoid it just to be cautious.
Footnote. My Peyronies Disease is changing very slowly. My downward curve is gone but I now have a slight right curve on full VED erection. That complicates knowing whether something works, or if you are we are just experiencing progressive changes common to Peyronies Disease
Thank Hawk. Life has been crazy . I Have had 3 viruses causing unspeakable hell in my life. A flu virus, a computer virus and an ex wife. I have read about the Vit. c and the glucosamine so I avoid them. I need to read up more on the MSM. everthing I have read talks about wound healing, pain reduction and reduction of inflamation. Here's a link with a nice write up.
www.mynaturalstore.com/msm-supplement.htm
here's 1 more link, http://www.msm-supplement.com/herbal-remedies/msm/msm-benefits
I've been doing the IR heat lamp treatment since Christmas with no noticable results (not even a good tan). I notice no other posts. Did we decide that was a dead end or just too soon to tell?
Number1
I've been using the IR for several months and I think it helps. Along with E,ALC, anti-inflamatory med. Keep on using it for several more months. good luck.
what type of improvement did you experience? less pain? decreased curve?
Roadblock,
I think I have less pain and less of a curve. Don't know for sure if it is the infrared, but I think so.
Pete
Thanks for the post. It is encourageing to know that someone is actually try to find a cure of Peyronies Disease.
Pete, a very interesting post. I have a comment.
I understand Dr. Lue's point about a breakup of the "plaque" not being a complete solution. However, my first thought is that anything that weakens the interlocked collagen matrix would make that tissue more amenable to stretching. For example, it might make stretching with a VED much more effective than before. If the result was that you permanently streched the left side such that you actually then had a bend to the right with no erection, but with an erection you were fairly straight, I'd call that success.
The situation is similar with Dupuytren's contracture. A treatment called "needle aponevrotomy" is now being widely used with good results. The contracture is painlessly perforated with a fine needle until it's weakened to the point where it is simply snapped by forcibly straightening the finger. The affected tissue isn't 'cured' in any sense, it remains fibrotic and doesn't look very pretty but ceases to be a functional problem.
Encouraging and I think Dr. Lue is definitely on the right track. I'd like to see a simple 'mechanical' solution to this problem, otherwise we wait 20 years for breakthroughs in tissue regeneration.
Emersonchief- I don't know if you saw this post- so posting again- I do not have a medical background- just try to read- and think out of the box-I cannot believe a needle injection ( trauma) is good for Peyronies Disease..I am a firm believer with Dr. Leu- that the healing system- is run a mock- causing excess fibrin etc.. and lack of circulation- I think too, there has to be a balance...
FYI- I have been conducting research with several companies that should fall into this category as well.
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..just turned 59- plus my younger brother 57- got it about the same time as me- At this time, 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%- not approved in the US yet- in Canada and England- an American Medical Company- and also make the equipment that does - laproscopy- ablation- to remove brain tumors- see link http://www.misonix.com/medical/US/applications -
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 mini targeted liposuction using high frequency to dissolve the tissue matter- which in Peyronies Disease is the plaque and fibrin tissue...and feel this method can be used for Peyronies Disease patients as well- just thinking out of the box again- they say, the urologist know of their equipment-its just an educational thing- where they have to apply the technology to another part of the body-...
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 think this could be the missing ingredient for the Auxullium trial as their modality requires injection with a needle- not good for Peyronies Disease-scarring.
BREAKING NEWS- This company just met with a Peyronies Disease doctor in Canada- (will get name) that wants to do a clinical trial using their syringe- to treat Peyronies Disease with new drugs, enzymes etc.
The main reason is for possible administration of a super strong enzyme creme as I have been 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-
Clinical Trial- I want to find a doctor to work with that can monitor the treatment ( before and after) - one that is willingling to explore other modalities - w/o surgery. Hopefully, I will be able to find one in the South Florida area that would be willing to place at least 5-10 of his Peyronies Disease patients in this trial.
INJECTION- 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.
Hopeful,
I appreciate your efforts. I live in Canada and would be interested to know the name of the doctor who is looking to do the clinical trial. Thanks
Pete wrote of Dr. Lue's experiment:
"...the laser completely dissolved the plaque to the point where it was totally undetectable. However, it did not fix the problem since the elasticsity did not return to the tunica albuginia even though the hard plaque was gone. So he dropped this approach...."
I assume the Doctor still believes that the presence of plaque in the first stages of Peyronies Disease causes the deformity and the runaway depopsition of more plaque. Then why isn't it worthwhile to eliminate plaque with laser after all, as long as it's done as early as possible - before a cascading builup makes the tunica permanently inelastic? Unless the Doctor suspects that the laser did damage of its own to the tunica, and reduced elasticity in its own way, I don't see why the approach was dropped.
[Good response-
I am waiting to hear back from Misonix www.misonix.com - as they have a device-thattotally ablates tumors, cures prostate cancer etc- a US company- they are getting approval to try system -on a cadaver in London- this system is currently being used to dissolve brain tumors etc-
Maybe there is a side effectto laser- I know the key is curculation- fresh blood- and wonder if a VED would help or do harm?????
Still searching- wil alsao let everyone know of the doc in Cananda that is gettingready to do research with injections with the needless syringe that I have discivered.
Hopeful,
"...the laser completely dissolved the plaque to the point where it was totally undetectable. However, it did not fix the problem since the elasticsity did not return to the tunica albuginia even though the hard plaque was gone. So he dropped this approach...."
I assume the Doctor still believes that the presence of plaque in the first stages of Peyronies Disease causes the deformity and the runaway depopsition of more plaque. Then why isn't it worthwhile to eliminate plaque with laser after all, as long as it's done as early as possible - before a cascading builup makes the tunica permanently inelastic? Unless the Doctor suspects that the laser did damage of its own to the tunica, and reduced elasticity in its own way, I don't see why the approach was dropped.
[/quote]
I am taking Pentox, Cialis (it lasts longer), arginine, and acetyl-l-carnitine. I don't think that viagra's use or proposed mechanism of action in the peyronie's study had anything to do with it's ability to increase erections. But it is a PDE inhibitor. I am taking this because of the study and because I heard Dr. Lue was using it with some success. But I have no idea what the results are, if any yet, of this study are. I guess it has just recently begun.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16470210&query_hl=7&itool=pubmed_docsum
But anyway, if it even halts the progression of it, it is worth taking. Chuck
For those of you with Uro's interested in treating Peyronies Disease, is there anything in the works regarding Beta-aminoproprionitrile fumarate? It is used in horses to prevent cross-linking of fibrin and scar formation in horse's with tendon injuries. Apparently it is injected and has demonstrated great results. It is quite a stretch to imagine it would be efficacious in patients with Peyronies Disease...or is it?
Might be worth a mention to the Uro's out there...someone might pass the idea along which might initiate some lab research on the modality. Who knows but worth keeping an eye on. Maybe someone could turn up some research already in progress, too. Just thought I'd throw it out there!
Also, how many of you are taking Viagra in low daily doses to treat Peyronies Disease? There is some preliminary results in lab rats showing that it does some good things. Since we all are essentially lab rats, maybe it could work for us as well?? ;) If you are doing this, what dose are you taking daily? What have uro's using this approach seen in terms of results?
Old man,
Certainly, part of the perceived effect is from chronic enhancement of NO in penile vasculature. But, check this out as well:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16469038&query_hl=1&itool=pubmed_docsum
There is one thing that has always confused me about using Viagra as a treatment regime. In the information sheet that comes with Viagra and all the new erection pills for that matter, it clearly states the medication should not be used by those with Peyronies Disease. Yet I know many, many urologist prescribe it as a treatment plan for thier Peyronies Disease patients. Strange, but true.
Rzz
RZZ,
Buddy, It is great to have you back on the forum.
Your post surprised me. As one than does a fair bit of research, I thought I had read all of the enclosed literature with Viagra and yet your post is news to me.
My very well known ED/Peyronies Disease doctor had me on 25 mg Viagra nightly after a radical prostatectomy and a 100 mg Viagra once or twice a month. I was told to take no Viagra during the 2 or 3 times each week that I was supposed to inject bimix into my penis (for ED from the nerve sparing surgery). He wanted me to continue both the injections and the Viagra after I got Peyronies Disease. Pharmaceutical literature and studies are full of information linking the components of bimix with penile plaque. This link is in addition to any danger from the actual needle.
The other interesting thing is that I seem to recall a study that links Viagra to causing Peyronies Disease type plaque in the tunica of rats. So here we are, with evidence that Viagra both causes and treats Peyronies Disease.
I mis-stated. When I said the Viagra information sheet says Viagra should not be taken by those with Peyronies Disease, I should have said the information sheet says that Viagra should be taken with extreme caution by those with Peyronies Disease. My apologies, Rzz
Viagra and pentoxifylline are both PDE inhibitors, although they both do increase blood flow as well. But I would like to mention, and this was mentioned above, that the mechanism of action for Viagra is probably NO.
In hairloss studies, many vasodiators were studied. The only ones that had any effect on hairloss were the ones that mimicked NO---like minoxidil. Increasing blood flow in and of its own didn't do anything at all. So NO is thought to be like a chemical messenger that initiates hair growth. It may be that NO initiates some kind of reaction that is beneficial for Peyronies Disease.
As for the caution given for Viagra and Peyronies, they are covering their asses. It reminds me of Upjohn saying that Rogaine is only effective on that back portion of the head. The FDA made them say that because that is the only place that it was tested initially. But it works elsewhere too. Maybe not as well but it does work on other parts of the scalp. They just can't say it. It's all regulatory stuff.
Interesting article on pentox at:
http://www.medicalnewstoday.com/medicalnews.php?newsid=38297
Thank you for posting this.
Gents,
Pentoxifylline also is active in reducing TGF-beta which has been implemented in the development of the fibrous plaques in Peyronies Disease. It seems to me that this is a reasonable treatment with a relatively small potential for serious side effects. Also, Dr. Lue is a well-respected physician in his field with an impressive CV. I know that I'm going to pursue the initiation of this medical therapy, and if any member has any experience with it please post!
roadblock
Quote from: roadblock on March 30, 2006, 10:54:15 PM
Gents,
Pentoxifylline also is active in reducing TGF-beta which has been implemented in the development of the fibrous plaques in Peyronies Disease. It seems to me that this is a reasonable treatment with a relatively small potential for serious side effects. Also, Dr. Lue is a well-respected physician in his field with an impressive CV. I know that I'm going to pursue the initiation of this medical therapy, and if any member has any experience with it please post!
roadblock
Yes, it looks like pentox is the only viable treatment for Peyronie's Disease.
A drug called Imiquimod has been suggested for use against Dupuytren's and Peyronie's. Here's a link to a synopsis of the article, which appeared in a dermatology journal.
http://www.highbeam.com/library/docfree.asp?DOCID=1G1:130058395&ctrlInfo=Round19%3AMode19b%3ADocG%3AResult&ao=
This isn't really new but I just heard about it. Apparently it is just a suggestion and no actual study has been done. However I think Imiquimod is a commonly available prescription drug - we wouldn't be waiting until doomsday for FDA approval. And it's already being used on keloids, which are similar formations of collagen.
wwww.pyrotab.com
please tell me that this crap is a joke...supposedly theyve been around for three years
The link on this post was edited to make it an inactive link. An active link would actually allow a search bot to crawl the link to their site and it would help improve their search engine rankings. Since it is clear these people are preying on others, I wanted to make sure we don't inadvertantly help them.
Hawk
It's not a joke, it's a scam. It only looks like a joke because it's so incredibly hokey. I particularly liked the link to the "clinical study" which brings up a popup saying it's "soon to be posted here". Holding my breath...
In the good old days you could do a domain name search and with a few minutes of Googling maybe find out who was behind a site like this, which incidentally was apparently registered only a week ago. Now, these guys hide behind outfits like DomainsByProxy.com, a company that registers a domain for you and protects your identity. That's where this domain is registered.
Thanks Blackeyes for pointing this out. In addition to not having anything under their clinical study, they 100% guaranteed it. TO DO WHAT???
NOTHING! QuoteHad the effectiveness of Pyrotab not been proven beyond any doubt, it would not be possible for us to make such a bold claim.
Here are their "bold claims":
QuoteThere is absolutely no alternative to its unique formula; it is a treatment; Thousands of patients have been successfully treated
A very carefully worded way of saying nothing. A unique formula is some guy mixing honey and goat urine in a boot. If he was successful in dumping it on 100 guys heads then he successfully treated them. No mention of a successful outcome for the patient, or any outcome. The reader is to assume those claims are in the study and that this all-important study is the one thing that somehow did not make it on to this slickly produced website.
One more reprehensible fraud trying to prey on those they consider vulnerable.
We need to do what we can to try to cause some grief for these people.
Pyrotab's mailing address, 26 York Street London W1U 6PZ, is actually the address of a company called "W1 Office" which provides what's called "virtual office" services - the current term for a mail drop and a phone that gets answered by someone.
W1's web site makes it sound good: "Just £60/month! A prestigious W1 London business address, a dedicated London 0207 telephone number with calls answered live in "Your Company Name"...
Of course, they're not going to give out names. But maybe we could call and set up a meeting meeting in one of W1's conference rooms, introduce ourselves to Mr. Pyrotab when he shows up have a nice chat.
Well, I guess the FDA has no interest in them!
"22,000 patients treated successfully"
i guess pyrotab was passively trying to gloat they ripped off 22,000 hopeless sob's..
i think we should invite these ppl to chat to tell them we are interested, and then completely rip on them...wait i got an idea from this...
maybe we should start a "ripoff" thread of hokey-pokey crap like this
Does anyone know if there is any evidence besides that one study that shows that Aceyl L Cartinine is effective in treating Peyronies Disease? I am currently taking these pills as well as Tim, and soon I will be starting the IONO treatments like he is. The pill bottle just says the pills take fat and convert it into energy, but says nothing about breaking up scar tissue, does anyone know anything about these pills and the theory behind how they work?
ComeBackid
I found this transdermal product used for bodybuilding. It seem to have ALL of the ingredients I am looking for. Here are the specifics as I have them now.
Supplement Facts:
Serving Size: 10 Sprays (5mL)
Servings Per Container: 48
Amount Per Serving:
Proprietary Blend: 500mg
L-Arginine
Arginine AKG
DiArginine Malate
Citruline Malate
Acetyl-L-Carnitine
Adenosine TriPhosphate
Adenosine MonoPhosphate
Nicotinic Acid
Other Ingredients:
Water, isopropyl alcohol, benzyl alcohol, propylene Glycol.
Directions: Apply 10 sprays to muscles being exercise 30 minutes prior to workout. Allow to dry 3 to 5 minutes. Apply again 30 minutes after workout to maximize recovery. Product may be applied on off days to maintain vacularity.
The website is:
http://www.1fast400.com/p1772_NO_Infuse_Legal_Gear.html
I am Not endorsing this product. Only passing along something I found interesting.
I thought the prevailing opinion of forum members is that transdermals such as verapamil do not reach the tissue where Peyronies Disease plaque is located. Studies have found this, and there have only been a few anecdotal reports of "some" improvement (which a percentage of patients will experience even with no treatment). So does it make any sense to simply change what agent is to be delivered transdermally? I guess some may believe that locally applying the medication as close to the site as possible is more likely than oral ingestion to partially reach the plaque. In that case, utilizing Ionto or DMSO may theoretically increase that chance of a transdermal product getting through and achieving results. But wouldn't there be some documented evidence of that by now?
Thanks to Liam for introducing this topic because I think it is very worthy of discussion.
I have a well developed skepticism of any information on almost any topic. The following are my thoughts based only on that skepticism. These are things I am thinking through so I will share them.
On the surface this sounds like a good, logical idea and it may well be
but:They state that systemic L-Arginine is impractical and that many drugs are delivered transdermally. Strangely, many of the examples they then offer are in fact systemic applications such as: birth control patches, diabetics etc. The birth control patch does not act on the butt cheek it is affixed to. The same is true with nicotine patches and others.
I know lots of diabetics. This is a disease that is well researched and funded. I know of none that use transdermal L-Arginine to improve circulation to the feet and would like to see full details of any studies that indicate it works as they claim. This would be a
huge break through to a large group.
They claim that "your muscles will receive a 32% - 35% increased blood flow with no real documentation, just their statement.
Having spent more than my fair share of time with body building books, magazines, and discussions with body builders, and trainers, I have tried to get down to the scientific. I know of no industry so full of hype, false claims, misleading ads, and BS as the body building industry. I also know of no group more willing to experiment with unproven and possibly dangerous products for the mere hope of "improving"
What "draws this product into the muscles"?
Assuming it is drawn into the muscles and increases blood flow:
This product also contains isopropyl alcohol, benzyl alcohol. Are these also drawn into the body?
Would all the structures and tissue in the penis respond to this product in the same way the long voluntary skeletal muscle would? Or could some penile structures be harmed by some of these substances?
I am interested in any discussion on this topic and any reports from those that consider the issues and decide to use it.
Hawk,
I found this about transdermal l-arginine and diabetes. Their conclusion:
We conclude that in the patients we studied with diabetes, treatment of their feet with a transdermal preparation of L-arginine improved both flow and temperature, and this effect was surprisingly long lasting. Such improvement of compromised local blood flow should be beneficial and could reduce the complications of the disease.
Here is a link to the site.
http://care.diabetesjournals.org/cgi/content/full/27/1/284
Again, I am not endorsing nor am I advocating the use of any product. This is for discussion only.
Liam,
Thanks for a very interesting 2004 study and link. I also appreciate your first disclaimer about not promoting this product but there is no need to be too worried about that. We don't think you are a shill and I have no problem with anyone promoting anything as long as they are up front about it and they are willing to answer direct questions.
Thanks again!
These are a few of the articles I've been reading related to topical l-arginine.
http://www.medscape.com/viewarticle/466972 -Diabetic Feet
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12135233&dopt=Abstract - Spinal Cord Injury
http://www.bjs.co.uk/bjsCda/cda/microJournalArticleDetail.do?DOI=10.1002%2Fbjs.4182&issueDOI=10.1002%2Fbjs.v90%3A9&vid=2 -relaxation of interior anal sphincter
There are plenty of articles and websites that are non scientific promoting some sex creme. I disregard that type. I don't know if it beneficial for Peyronies Disease. I am interested in it and am trying it out as I stated in an earlier post. I am using it in conjunction with traction.
Liam,
Thanks for the links. Good info. My analysis, at least at this very moment? l-arginine couldn't hurt?
The one I use is NO Infuse by Legal Gear. Body builders spray this on the body part they are working on (add your own joke here). I decided on it after comparing ingredients. I assume NO is Nitric Oxide and not saying "no" it will not "infuse". I say this because I am not sure of the transdermal "vehicle".
It does not dry out the skin nor irritate me. But test a small area not so close to home before using. I use enough to cover the area, not the ten pumps they recommend (add your own joke here).
There is another product, marketed as a "male enhancement" creme. Its called Maxoderm. Friends from the gym use it like NO Infuse. It may have a better transdermal effect. I may order some and compare. If I do, be assured I will post any results or lack of results. I was reminded to add this product by the ad on the bottom of the page linked below.
As everyone knows, I'm just a guy experimenting. Research and decide for yourself before trying anything.
Here is a link to one site that sells it. There are others. This one was just the first that came up on Google.
http://www.supplements101.com/store/NO_Infuse_p/legnoinfuse.htm
NO is a short-lived molecule, and is not what is in the product. Rather, they have a list of "NO promoters" that are either precursors or chemicals that can "donate" NO to a molecular reaction. The problem is that there is no data presented that demonstrate penetration into tissue. The diabetic data is encouraging, though, that topically applied chemicals can get in - the question is simply how deep can they go?
I am now about 25% of the way through using my more cncentrated verapamil iontophoresis, and so far it is is disappointing - no results to speak of so far. I wil keep you all posted.
Tim
Hopeful, this is in response to your request. Re: my post of June 23, 2006 concerning my experience with topical verapamil. Magnesium sulfate , like verapamil is a calcium channel blocker. The difference I believe is that MS is a natural substance. It was discovered in spring water in Surrey, England in the 1800's. MS is NOT a cure for Peyronies Disease however it has helped me with some of the Peyronies Disease symptoms; hinge effect and dents. It was a very gradual improvement. I have only been able to find one source for this topical version of epsom salt. They are Kirkman Labs of Lake Oswego, Oregon. I have no financial interest in this company. Also it's important to say that they do not sell this product as a treatment for Peyronies Disease. It comes in a 4oz. (113 grams) jar. Each gram has l00 mg of MS. No product helps everyone ;I don't think this is an exception. The good news is that it is very inexpensive. good luck to all. http://www.kirkmanlabs.com/products/minerals/magnesium/Mag_Sulf_Cream_Spec225.html
Mark501,
How many times did you apply the cream to your penis? How much did you apply? How long did it take before you noticed any results?
ComeBackid
I began using it in my 5th month of Peyronies Disease. Shortly afterwards, the progression stopped. At that point I was in pretty good shape with less than a 5 degree curvature and one very small dent. The progression remained stopped until my 11th month when I had hernia surgery. I also had a lipoma disected from spermatic cord. (a benign lipoma; separated from cord but not removed). Shortly after surgery 30 degree bend to left. The rest of story on June 23 post. I normally use 2-3 grams twice a day. I have not been consistent in my usage but use almost every day. There have been times in the last 2 years when I have used alcohol-free liquid propolis mixed in with the MS. I can't say that this did any good. Just don't know. What an interesting smell propolis has in liquid form! On the page that Kirkman sends with the product it says: "recommended usage: 1 gram of cream per application usually to the back, shoulders, though any extensive body area is satisfactory" "cream may be applied 3 to 4 times daily or as recommended by your physician" One thing to consider is that some of the preparation will rub off onto your underwear so perhaps a bit more is called for each time. Mark 501
I received E-mail from Kirkman Labs. They say: "creams are manufactured by creating an emulsion, a 2 phase process which incorporates water soluble ingredients with oil soluble ingredients by the use of surfactants called emulsifiers. MS generally breaks down most emulsions causing them to separate into layers thereby becoming ineffective. Our formula handles the high concentrations of MS and is still very bioavailable. The glyceryl di laurate is the ingredient which makes this possible. The chemistry revolving around liposomal formulations is such that the MS would break down the anionic emulsifier used to make liposomal gel so this type of formulation is not feasible."I appreciate their response & still think its worth a try. Mark
Hi Mark501,
Dose Magnesium Sulfate actual penetrate the skin and get into the plaque like verapamil? What is the carrier agent that does that???
Fighter, They are saying that one of the ingredients, glyceryl di laurate makes it possible for MS to be "very bioavailable". They are not claiming that it penetrates into the plaque. I repeat they do not sell this product as a treatment specifically for peyronie's. I'm sure it does penetrate the skin at least. It has certainly helped me. As I said before this is a topical version of epsom salt. When someone adds epsom salt to their bathwater it does penetrate the skin to relax muscles. If you google epsom salt there is a lot of info available on the web. If I find a particularly good website on this, I'll let you know. good luck, Mark
Mark did the Magnesium Sulfrate help your dents and hinge? Can it help restore grith also? What are the side effects? Is it even possible to get the dents out of your penis? Thanks
Howcanthisbe, As I said before, I do believe the MS was the main reason for the improvement of dents & the hinge effect. At one time I had 2 dents on each side. Strangely enough, they were not opposite each other. The two on the right side are gone. On the left side both are over 50% reduced in size. This took about one year to take place; always very gradual. You asked about girth. I don't know the answer to that. I have had no side effects. This product is very concentrated so I wouldn't go too far beyond the instructions that come with it. They provide a l gram cup with the product. You might want to consider consulting with your doctor about dosage. Each gram of this emulsion contains 100mg of MS. I told the 2 urologists that I've seen that I was using this product. They did not object to my using it. They also did not direct me to use a cerain amount. In the earlier stages of Peyronies Disease it seemed to help with stopping the progression of symptoms however that is not so much the case in later stages with me. The plaque that I have seems to be constantly changing. Mark
Mark so your still getting worse? Thats good to hear it made 2 dents go away. Im only 23, do you think that makes me chance of recovery better? I just dont wanna progress any further, im too young to be dealing with this crap...... hopefully since it was a drug induced side effect it wont get any worse or may even get better. I know nobody knows, thats what sucks so bad about this condition. I hope im one of the lucky ones that dont get it so bad.
howcanthisbe, One big advantage you have over me is that you are very young. I bet there will be a great solution for you. It is tough at any age to wait for a new effective treatment to be announced. In my situation the main issue is curvature at about 30% upward. Everything else is operational: testosterone level, rigidity, sensativity & ejaculation. good luck, Mark
Thanks Mark. I sure hope I get better or at least dont get worse. I will keep my fingers crossed.
Thanks..MArk
I am going to order- plus I am going to order their Zinc creme...as well- can't hurt and Zonc is supposed to be good for ED problems as well..
Hopeful
. Each gram has l00 mg of MS. No product helps everyone ;I don't think this is an exception. The good news is that it is very inexpensive. good luck to all. http://www.kirkmanlabs.com/products/minerals/magnesium/Mag_Sulf_Cream_Spec225.html
[/quote]
Mark, I am trying to soak once a week in warm epsom salt water. Couldn't hurt and it relaxes my muscles.
Did you know it will help bougainvilleas bloom? My plants weren't blooming so I went to a gardening forum. That is what they suggested. IT WORKED! :)
hopeful, Suggest that you begin only with the MS cream and add the zinc creme at a later date. At least 7-10 days later so that if you have a reaction such as a rash or burning sensation you will know which cream you are sensative to. I don't have any information that a zinc cream would be helpful. Mark
Hi Hopeful,
My son is 23 and has Peyronies Disease since about three months. He has Pudendal Neuralgia since 6 months and cannot sit. He is actually taking amitriptyline and I would like to know about any treatment which could help.
I have read that Neprinol pills are a good treatment.
Thank you in advance for your reply and advises.
Quote from: hopeful on March 15, 2006, 08:05:06 AM
Emersonchief- I don't know if you saw this post- so posting again- I do not have a medical background- just try to read- and think out of the box-I cannot believe a needle injection ( trauma) is good for Peyronies Disease..I am a firm believer with Dr. Leu- that the healing system- is run a mock- causing excess fibrin etc.. and lack of circulation- I think too, there has to be a balance...
FYI- I have been conducting research with several companies that should fall into this category as well.
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..just turned 59- plus my younger brother 57- got it about the same time as me- At this time, 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%- not approved in the US yet- in Canada and England- an American Medical Company- and also make the equipment that does - laproscopy- ablation- to remove brain tumors- see link http://www.misonix.com/medical/US/applications -
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 mini targeted liposuction using high frequency to dissolve the tissue matter- which in Peyronies Disease is the plaque and fibrin tissue...and feel this method can be used for Peyronies Disease patients as well- just thinking out of the box again- they say, the urologist know of their equipment-its just an educational thing- where they have to apply the technology to another part of the body-...
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 think this could be the missing ingredient for the Auxullium trial as their modality requires injection with a needle- not good for Peyronies Disease-scarring.
BREAKING NEWS- This company just met with a Peyronies Disease doctor in Canada- (will get name) that wants to do a clinical trial using their syringe- to treat Peyronies Disease with new drugs, enzymes etc.
The main reason is for possible administration of a super strong enzyme creme as I have been 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-
Clinical Trial- I want to find a doctor to work with that can monitor the treatment ( before and after) - one that is willingling to explore other modalities - w/o surgery. Hopefully, I will be able to find one in the South Florida area that would be willing to place at least 5-10 of his Peyronies Disease patients in this trial.
INJECTION- 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.
You need to go to a competent urologist and have your son evaluated. I think everyone here would be hesitant to provide any advice given the complicating factors of your son's condition.
Lily,
I agree with wantitstr8 about offering advice. In general terms, though, you can look around here and see several treatments being tried. Check the supplements page. I have heard of and considered Neprinol. I have not yet been convinced to try it.
Also, even supplements can have interactions with different meds. Please check before starting any.
One other thing, a "blood supply problem" is linked by some to both erectile dysfunction and Peyronies Disease. Amitriptyline has erectile dysfunction listed as one of it's side effect. I only bring this up as a subject to discuss with your doc.
Good Luck
Liam
Lily,
The one other thing I would suggest is to have your son consider logging on to the forum. If he is suffering from the potentially devastating psychological effects of Peyronies Disease or ED at such a young age, I am sure he would find top notch support and a good basic education on options, finding a good doctor, interacting with a doctor, and evaluating treatments. Such suffering could be obvious, or worse yet, it could be bottled up. We have many here and all offer support. Several of our members are no older than your son.
Best of luck
Hi All,
I have been doing some internet research and came across the following. Let me know what you gents think about the following articles, thanks. ;D
Cheers.
12 amino acid sequence
Abstract
The present invention relates to an isolated target sequence. The target sequence is a splice variant of PDE5 called a PDE5a1, a component of which is presented as SEQ ID No 1. The identified target sequence of the present invention may be used to as a target to identify agents (such as modulators) useful in the prevention and/or treatment of a disease associated with scarring and/or fibrosis or to selectively identify smooth muscle cells and myofibroblasts and myoepithelial cells in samples of normal and diseased tissue from individuals.
http://appft1.uspto.gov/netacgi/nph-Parser?Sect1=PTO2&Sect2=HITOFF&p=1&u=%2Fnetahtml%2FPTO%2Fsearch-bool.html&r=11&f=G&l=50&co1=AND&d=PG01&s1=intracavernosal&s2=injections&OS=intracavernosal+AND+injections
Penis enlargement
Abstract
A method for causing a permanent increase in the length and girth of a male subject's penis, the method comprising treatment comprising the step of (a) administering to the male an effective amount of a vasodilator selected from the group consisting of a vasodilator per se and compositions thereof comprising a pharmaceutically-acceptable diluent or carrier, to induce a cumulative prolonged engorgement of the subject's penis; and (b) repeating step (a) as necessary to cause the increase during the treatment. A potentiator which enhances the effect of the vasodilator may also be used.
http://appft1.uspto.gov/netacgi/nph-Parser?Sect1=PTO2&Sect2=HITOFF&p=1&u=%2Fnetahtml%2FPTO%2Fsearch-adv.html&r=1&f=G&l=50&d=PG01&S1=20050065159&OS=20050065159&RS=20050065159
You can apparently get a patent for anything.
I can not find any information on this person who is filing this patent. There is no way at all to independently verify these "case reports", which are IMHO probably faked. And the patent covers virtually every single compound that one could ever conceive of injecting rubbing infusing or giving in any way shape or form. The patent seems designed to "cover all bases" so that this person can then honestly say "Patent pending!" at the bottom of the page, or better yet "Our special patented formula that is proven to work!!!".
It reeks of BS to me.
Junk patents have become a big problem in the software industry, where I work. And let's not forget Jerry Easterling (PDL) who obtained a patent on any and all topical usage of calcium channel blockers for Peyronie's - an idea I doubt was even his.
The US patent office is woefully underfunded and understaffed. The patent examiners often can't begin to understand the technical details of an application.
J,
Your exactly right, underfunded and understaffed coudln't be more right.
Quote from: j on July 06, 2006, 10:50:26 PM
Junk patents have become a big problem in the software industry, where I work. And let's not forget Jerry Easterling (PDL) who obtained a patent on any and all topical usage of calcium channel blockers for Peyronie's - an idea I doubt was even his.
First off, Easterling shouldn't even be allowed to patent any and all topical usage of calcium channel blockers for peyronies. As Tim has pointed out this gives Easterling a monopoly, and blocks potential research on topical drugs to treat peyronies. Secondly if Easterling can never prove his idea and product works, in time I believe his patent should be revoked, all he is doing is sitting on the patent and doing nothing with no further studies or proof. I couldn't agree with Tim more, in fact after completing my report and anxiously awaiting the results of our survey, putting the pieces of the puzzle together I believe this patent idea was part of a bigger strategy, with Easterling knowing his product simply doesn't work and blocking out anyone to disprove his product. I encourage members to view my report on PDLabs and topical verapamil, and if you have used topical verapamil from PDLabs, Talon Pharmacies, or used the generic version, make sure you take our survey!
Report on PDLabs and Topical Verapamil (https://www.peyroniesforum.net/index.php/topic,328.msg3276.html#msg3276)
The PDL patent is a "Non-Provisional (Utility) Patent". Under patent law, the person or persons filing a "Utility patent" need only present "ONE CLAIM"......key word is "Claim" not proof, in doing so this claim must be written in a specific language as dictated by the USPTO to be legal. What a joke this federal department is. J has hit the proverbial nail on the head when he says that the USPTO is under staffed and under funded. But their laws afford people like Easterling, under law, to get away with what he has done within his patent. If you really want to get the full idea on just how easy it was for PDL to encompass the entire calcium channel blocker family of drugs I have attached the URL to the USPTO for your reading pleasure >:(.
http://www.uspto.gov/ You will love this stuff ???
Below are the definitions of CLAIM and UTILITY PATENT as defined by the USPTO, Also an interesting read:-(
claims: define the invention and are what aspects are legally enforceable. The specification must conclude with a claim particularly pointing out and distinctly claiming the subject matter which the applicant regards as his invention or discovery. The claim or claims must conform to the invention as set forth in the remainder of the specification and the terms and phrases used in the claims must find clear support or antecedent basis in the description so that the meaning of the terms in the claims may be ascertainable (clearly understood ) by reference to the description. (See 37 CFR § 1.58(a)).
utility patent: may be granted to anyone who invents or discovers any new, useful, and nonobvious process, machine, article of manufacture, or composition of matter, or any new and useful improvement thereof.
NOTE the words I have colored in blue.......Personally I find this very interesting, just my own thoughts.
Much to anyone's lacking in delight, Easterling is LEGAL.
Barry
Hi Lily
I wish I had good news - but I do not as of yet- as for Neprinol- it is a very expensive enzyme formula base- I spoke to the owner of the company that created the formula for them- Enzymes - do help- I have not troed Neprinol yet- I am still trying the topical enzyme creme - and taking other oral enzymes-and am still waiting to hear about the possible study with the needless injector- I do not know the condition you mentioned or the drug.... I stil think IONTO is a possible treatment- however, I am not hearing good results about the Physion unit.... please keep me in the loop if you hear of anything else
Quote containing complete posts was deleted from this post - Hawk
Barry, pudder135, since we're venting our frustration with America's intellectual property laws, let's not forget injectable collagenase (AA4500). In 2000, BioSpecifics was awarded patent number 6,022,539 from the U.S. Patent Office for the use of injectable Collagenase enzyme to treat Peyronie's disease. They've since licensed it to Auxilium
Here is something that, unlike verapamil, appears to actually work. But we'll never see it unless and until the big players at these companies figure out how to make a ton of money off of it. If they can't come up with a plan with a big enough payback, they'll sit on that patent forever.
Interesting book review I found through google: Heres the reader review of interest:
I got this book subsequent to being diagnosed with high cholesterol, and being put on statin medication, to reduce it. I was appalled when I went to pick up my first thirty Zocor tablets, and was told "That'll be $155 please." I haven't had health insurance for three years now, and couldn't afford this amount. I was abit dismayed anyway, at being put on this medication. I thought I'd be able to bring my cholesterol down by reigning in my diet, I'd been eating poorly prior to my bloodwork. I found generic medication I could afford, and took it for two months, but wasn't convinced that inhibiting an enzyme in my liver was the way to solve the problem; if anything, the medication allowed me to keep eating crappy, and not have bad blood levels! So, after trying it the conventional way, and seeing that, yes, my cholesterol levels had come down, I decided to try Dr. Rosedale's diet, and supplement plan. I found it online, while researching cholesterol. I am in my third month of the diet, and, while I say I "approximate" the diet, I pretty well stick to the supplement plan. I've had some really good experiences with this, and some fear, at the high levels of some supplements he recommends, but have had remarkable results with Vitamin K. I was diagnosed with osteopenia a year or so ago, and put on Fosamx, which I refused to take. It also was expensive, $14 per weekly pill, and its mechanism of action, as well as potential side-effects turned me off. Dr. Rosedale recommends 2000 mcg of K per day for oseteoporosis prevention, 8000 mcg per day for treatment. Since osteopenia is a milder form of bone loss that osteoporosis, I take 5000 mcg per day, of K-1, which is what you get in most vitamin bottles. The chemical name starts with a P. There's another Vitamin K, which is K-2, and whose chemical name starts with an M, which you have to be careful about, because high levels of it can harm you, but the research I did on the internet says that K-1 isn't harmful at high levels, and can be helpful with connective tissue diseases. This I have to tell you. I have suffered from Dupuytren's in my left hand for five years, and mine was atypically painful. I was also getting Leiderhose, and Peyronies. Devestating. I was scared to take 2000 mcg K per day all at once, from the 100 mcg I was taking, so I ramped up to 1000 mcg the first day, then 2000 mcg the next day, and 5000 mcg the fourth day. After the second or third day, I began to notice dramatic changes in my left hand: reduction of pain, increased comfortable range of motion. Now, three weeks out, my Peyronies is all but gone, my Leiderhose almost gone, and my left hand only mildly affected. I was starting to get it in my right hand as well, and althought I still feel aches sometimes, it's greatly reduced over what I was experiencing before I took the increased doses of K. The stuff is cheap, too. I get 100, 100 mcg pills for $1.96. For a supposedly incurable disease! But I tried ordering Dr. Rosedale's supplements online, at his website, and although it took my order, it didn't ship, and my bankcard was never debited. Also, I wrote to Dr. Rosedale to tell him about the connective tissue disease improvements, with the Vitamin K, and to thank him for writing his book, and my mail came back, "Moved, no new address". I didn't know what to make of this, but the changes have been marvelous. I'm learning what it's like to relax. I was in a hyper state for so long, I guess with all the carbohydrates I used to eat, that the unhyper state seemed strange to me at first. I can look, plan, act. Before, and still sometimes, I act compulsivley, always running, like a hamster on a wheel, but this diet slows me down, allows me to be more in the moment, emotionally, which is not always positive, but at least it's real, and I'm learning to tolerate emotions I previously would have run away from. I used food as a place to hide, and, letting that go, I deal with reality more directly now. I just stop, get ahold of myself, wait, and the overwhelming feeling passes. I experience moments of stopping keeping myself in a perpetual motion cycle, and see outside of the corner I'd painted myself into.
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Heres the actual link:
http://www.amazon.com/gp/product/0060565721/103-6847158-7218257?v=glance&n=283155
Also im sure this is fake, but I found this site:
http://peyronies-disease-help.com/testimonials.html
Anyways I always love reading good news about peyronies, it gives me a little hope,lol.
Fascinating account. Like all anecdotal accounts, it may have nothing to do with what it appears to be about - but it is enough to make me look closer! I will do some research on this...
Tim
Here is another post on Amazon.com by this guy:
"The description says the product contains phylloquinone, which, I believe, is the naturally occuring version of Vitamin K, as opposed to what you usually get in Vitamin K supplements, which is, I belive, the synthetic version of Vitamin K, phytonadione. I have used both, for osteoporosis prevention, actually, osteopenia treatment, and foind remarkable chages to my Dupuytren's in my left hand, within days of using 5mg per day. Trouble was, counting out 25, and 25 100 mcg tablets per day of the standard 100 mcg dosage. Found 500 mcg tablets, but, within days, felt positive effect on my Dupuytren's disappear. Looked on the bottle, and saw phylloquinone, instead of phytonadione. Switched back to the phytonadione, and the problem reversed in a couple of days. Found this product, through the munufacturer, full retail price, plus shipping, and, within hours, had run out of phytonadione, and was using up the supply of phylloquinone I'd bought, the discomfort in my hand was easing. Also have Ledderhose in my feet, and it helps similarly with that. But this product has phytonadione, not the phylloquinone that the description advertises. Also, best price I've seen, no shipping charges, even on one bottle. I'm going to contact the company to tell them about the mistake, but this stuff is amazing. Cheaper than Fosamax, better mechanism of action, for bone loss, and helps arteries, and connective tissue difficulties as well."
Tim do you think this guy is just a scam promotor maybe for a company claiming to cure peyronies that links back to a site? Anyways im off to work, see you guys later
I have never heard of symptoms of Peyronies Disease or Dups coming and going that quickly. Vitamin K(and phylloquinone) occur in green leafy vegetables you eat. It, put simply, helps your blood clot. This flies in the face of the studies with pentox and sildenafil.
I think the author may have been partaking of the green leafy herb you smoke ;).
QuoteI was in a hyper state for so long, I guess with all the carbohydrates I used to eat, that the unhyper state seemed strange to me at first. I can look, plan, act. Before, and still sometimes, I act compulsivley, always running, like a hamster on a wheel, but this diet slows me down, allows me to be more in the moment, emotionally, which is not always positive, but at least it's real, and I'm learning to tolerate emotions I previously would have run away from. I used food as a place to hide, and, letting that go, I deal with reality more directly now. I just stop, get ahold of myself, wait, and the overwhelming feeling passes. I experience moments of stopping keeping myself in a perpetual motion cycle, and see outside of the corner I'd painted myself into.
Liam, I am glad you pointed that out. It caught me when I read it and I thought this guy may just be a bit disconnected from reality. It would certainly make a jury wonder about his reliability as a witness. I am glad you had the judgement to shine a light on that part of his review.
PS: Nothing even comes close to approaching kale for vitamin K content. I had an unusual very bloody prostate biopsy. As a result, I knocked out all vitamin E and I ate kale for 3 days prior to my next 2 biopsies. Probably unnecessary, but after my experience I was taking no chances.
This is from "The world's healthiest Foods". "1,000 milligrams or more of vitamin E can interfere with the bodily activities of vitamin K. This potential injury of vitamin K metabolism was largely the reason why the National Academy of Sciences, in the year 2000, set a Tolerable Upper Limit of 1,000 milligrams per day for vitamin E." This is a 7 page article about vitamin K. www.whfoods.com/genpage.php?pfriendly=1&tname=nutrient&dbid=112
I agree that Mr. K. sounds confused. Dupuytren's is never painful, to my knowledge. If he's complaining about chronic pain in his hands, he's not talking about Dupuytren's. And anything that could dissolve advanced contractures in a few days would probably also be a good furniture stripper. ;)
Has anyone tried this combination? I'm thinking of trying it. Please advise. Thank you.
Rico
Hi guys I first posted here about 6 weeks ago. At that time I had a severe case of Peyronies Disease. Hard plaque covering almost the entire left side of my penis and half of the top. Caused nearly a 90 degree bend at full erection. I was devastated and of course unable to have sex.
I have very exciting news to report. I have been almost completely cured of Peyronies Disease in 6 weeks.The plaque is virtually all gone, the penis is nearly completely straight at full erection and I am back in action sexually.
I used a cocktail of things to treat my condition so I will list everything I have done.
500 mg of Cipro twice a day, I have 90 day supply so will continue until all used up. (I bought a generic version of Cipro but it is same thing)
1000 mg acetyl L carnatine twice a day
400 mg Vit E twice a day
Prayer
That is all I have done and I have had dramatic and I do mean dramatic improvement.
Leopold,
That is great news. I'm not sure I would give credit to the med and supplements. Spontaneous recovery has been documented. This is biggest obstacle in determining the efficacy of a treatment.
Having said that, I would continue taking everything, too. :)
I'm not sure if you read about some of the guys saying they developed Peyronies Disease while taking Cipro. Do you have any thoughts on the reasons why Cipro may have helped?
Good Luck :::cheering:::
Liam
Quote from: Leopold on July 26, 2006, 11:32:49 PM
Hi guys I first posted here about 6 weeks ago. At that time I had a severe case of Peyronies Disease. Hard plaque covering almost the entire left side of my penis and half of the top. Caused nearly a 90 degree bend at full erection. I was devastated and of course unable to have sex.
I have very exciting news to report. I have been almost completely cured of Peyronies Disease in 6 weeks.The plaque is virtually all gone, the penis is nearly completely straight at full erection and I am back in action sexually.
I used a cocktail of things to treat my condition so I will list everything I have done.
500 mg of Cipro twice a day, I have 90 day supply so will continue until all used up. (I bought a generic version of Cipro but it is same thing)
1000 mg acetyl L carnatine twice a day
400 mg Vit E twice a day
Prayer
That is all I have done and I have had dramatic and I do mean dramatic improvement.
Leopold, i swear this is probobly one of the only things that have made me smile in the past 3 months. I AM EXTATIC that you found something that works, i am so honestly happy for you. Im not sure what cipro is and if i can take it because im only 16, but being the only thing that i have heard has almost completely corrected your problem i am definatly going to look into it. These little lights of hope make everything alot easier. If you dont mind me asking how long have you had peyronies? i have had mine for about 3 to four months and it is not nearly as bad as what yours sounds like. Maybe my diesease hasnt progressed all the way but if you could fill me on what Cipro is, and how you learned about this i would be so amazingly helpful. This is the first good news i have heard and i am so happy.
I pray every night for myself, and i will pray for you to be completely back to normal.
Tyler
Cipro (Ciprofloxacin Hydrochloride) - An anibiotic, well known for the drug of choice for inhalation anthrax exposure.
Hi guys the reason why I took Cipro(Genereic is called Zoxan) is because I read some guy on another forum used it. I was desperate so willing to try anything.
Just a followup on my previous post, I am not completely cured so I don't mean to overstate my results. I still have some plaque, but is is much much less. But to go from a severe 90 degree bend to a very slight bend in 6 weeks is quite dramatic to me. I am going to keep fighting this until I am completely cured. ;)
Fight on Brother. We are behind you all the way. :::: playing Rocky theme::::
Hey guys.Anyone with any background on taking Bromelain? My new Lady , who is into alternative/holistic healing emailed this short info about Bromelain. Tell me what you think. I'm gonna try it myself.
BROMELAIN
More than other enzyme supplements, bromelain should be recognized for the one major ability that is not found in any other potential therapy that is so easily, readily and economically available to the man with Peyronies Disease. Bromelain is unique among the protein digesting enzymes in its suspected capacity to stimulate secretion of collagenase. This particular enzyme, collagenase, is most important to Peyronies Disease because mature and developing scar tissue is primarily made of collagen. Collagen is degraded or digested by collagenase. And as was just stated, "bromelain is suspected to increase secretion of collagenase" that can take apart and remove the collagen material that makes up the major part of scar tissue. This is great news for the Peyronies Disease sufferer! Bromelain increases the enzyme that takes apart the major building material of scar tissue.(38) That single bit of information should be enough to motivate a guy with Peyronies Disease to jump out of his chair and order some protein-digesting enzymes, especially bromelain.
In addition, bromelain has several other abilities in relation to soft tissue healing: it inhibits clot formation, breaks down fibrous tissue,(39) reduces inflammation, and it has skin debridement (wound clearing) properties. Other less direct benefits are its ability to enhance absorption of drugs and nutrients, and to enhance the immune response to allergies. Bromelain is well absorbed orally and available evidence indicates that its therapeutic effects are enhanced with higher doses. Although all of its mechanisms of action are still not completely understood, it has been demonstrated to be a very safe and effective therapy. All in all, bromelain has many large, medium and small benefits for the man with Peyronies Disease. --Zig The Twig
I don't believe this breaks down the same kind of plaque(scar tissue), that is associated with peyronies. It is more for the type that you would have in your artires.
I will add though that a good healthy diet, with 12 pieces of fruit and veggies everyday with good proteins and plenty of nuts..these five are the best pecan, walnuts, almonds, Brazil and cashews along with plenty of water and arginine will help wound healing. Lots of fresh greens. I have been on this diet for about 10 days along with epsom salt baths and I can tell my body is feeling better, mentally and my little guy looks better also. Not a cure all, but a way to give your body a chance. Save you money and spend it on fruit and veggies and lots of greens and nuts and take the arginine and what Tim and Liam are taking, once again this is for a different animal than we are dealing with.
I have been doing some google searching on this cirpo and ask some questions, most say it has no significant effect on scar tissue, but one MD did state that in some cases it is used in tendon rupture. I always felt mine was like a small rupture, and tendons have very little blood flow and that is why they don't heal, like the tunica, I don't know and would like to hear what Tim and Liam have to say about this, they seem pretty well verse in the medical field.
This diet I'm on, man you crap like a goose:).....but it feels healthy....
Rico
This whole thing is indeed interesting. Bromelain is just one of the supplements I have been taking but until now I was unaware of the collagen connection. (Here's a link to an authoritative site: http://www.cancer.gov/Templates/db_alpha.aspx?CdrID=44125 ). Exactly whether its en vivo performance matches its performance on the meat counter is unclear, but it has been used in arthritis trials to test out just that concept ( http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=11407084&query_hl=3&itool=pubmed_docsum ). And cardio vascular disease indeed involves the same collagen scarring as one encounters with peyronies ( http://en.wikipedia.org/wiki/Atherosclerosis ).
Thanks Rico, for the info. Like you said, it is somewhat hard to incorporate all the healthy foods daily that you have suggested. We unfortunately live in a fast paced society where processed junk is in the daily diet. I wouldn't mind some quick light recipes when you have the time to PM me. Since my girlfriend seems to have quite a bit of knowledge about alternative healing, I will try the Bromelain anyway, as well as Gota Kola, especially since she has taken such an interest in this and bought both items. I believe she is also going to mix up a salve/tincture to apply as well. I'm willing to make the sacrifice if this is what she wants to do. ;D She has signed on as a member now in the Ladies group and I'm very proud of her.
Thanks again- Zig the Twig
Quote from: Leopold on July 27, 2006, 02:36:21 AM
Hi guys the reason why I took Cipro(Genereic is called Zoxan) is because I read some guy on another forum used it. I was desperate so willing to try anything.
Just a followup on my previous post, I am not completely cured so I don't mean to overstate my results. I still have some plaque, but is is much much less. But to go from a severe 90 degree bend to a very slight bend in 6 weeks is quite dramatic to me. I am going to keep fighting this until I am completely cured. ;)
Do you think Cipro Is helping? Why? I think i am going to follow your regime exept i will use Topical Verapamil instead of taking Cipro, anyone i talk to says it has no correlation with Peyronies Disease and that it will just F~@< with my immune system? What do you think? What makes L carnatine better than L argenine? Im really a newb to all this and would die to get cured of peyronies, i am also still in the inflamitory stage so i think i should take action now.
If you are in the inflammation stage I would try a warm soak in the tub with epsom salts, it is cheap and will reduce swelling, it has help me, I wish I would of started it earlier, it took me almost three months to start it. Read as much as you can on here, it by far the best you can get, then do what your heart tells you to do, don't pull on it and look at it every two seconds, sometimes you have to watch a film or read a book, eat right and rest....time heals....."This Too Shall Pass"....epsom salts are cheat..walgreens 12lbs...good for at least 10 baths $9.....warm water for 25 minutes...it will help with inflammation...
Rico
All:
I took cipro for a prostate infection that I developed at the same time I was developing Peyronies Disease. My doctor followed with a prescription for Levaquin for 21 days and Tequin for 60 days ( only took for 30) . My Peyronies Disease pain was on and off during this time. I did not develop a curve until 6 months after stopping these antibiotics. All three are from the same family of antibiotics. I can't be sure whether they had a positive impact or negative. My discussions with Hawk and the data he has provided indicate that antibiotics can be used to prevent scars for worsening.
Concerning ruptured tendons, apparently there is a correlation with taking these particular antibiotics and them causing a ruptured tendon, especially the achilles tendon. The combination of steroids and these antibiotics increase the risk of tendon ruptures.
Phil
Quote from: JustLookingToBFixed on July 27, 2006, 03:30:19 PM
Do you think Cipro Is helping? Why? I think i am going to follow your regime exept i will use Topical Verapamil instead of taking Cipro, anyone i talk to says it has no correlation with Peyronies Disease and that it will just F^@% with my immune system? What do you think? What makes L carnatine better than L argenine? Im really a newb to all this and would die to get cured of peyronies, i am also still in the inflamitory stage so i think i should take action now.
Cipro has an anti scarring affect from what I understand. Acetyl L-carnatine is recommended many times in this forum so that I why I took it. I started taking all this while I was in the beginning stages and inflammatory. So I attacked it early as I could.
Quote from: Leopold on July 28, 2006, 05:36:56 PM
Quote from: tyler on July 27, 2006, 03:30:19 PM
Do you think Cipro Is helping? Why? I think i am going to follow your regime exept i will use Topical Verapamil instead of taking Cipro, anyone i talk to says it has no correlation with Peyronies Disease and that it will just F^@% with my immune system? What do you think? What makes L carnatine better than L argenine? Im really a newb to all this and would die to get cured of peyronies, i am also still in the inflamitory stage so i think i should take action now.
Cipro has an anti scarring affect from what I understand. Acetyl L-carnatine is recommended many times in this forum so that I why I took it. I started taking all this while I was in the beginning stages and inflammatory. So I attacked it early as I could.
How long have you had peyronies?
Yesterday, I found out that my problem was a case of Peyronies disease. It's been going on for about 6 months now. I don't have pain, and the scarring is limited to the base of my penis. I guess I'm lucky it isn't worse, but the curvature and maybe some resulting ED make it difficult to perform penetration.
My urologist told me that the cause is unknown and there is no known cure. He put me on vitamin E (600 to 800 ius per day). After the inflamation phase, things may get better if the inflamation doesn't cause more damage. In the meantime, he prescribed Levitra. I haven't tried it yet and would prefer a natural solution.
I've been reading all morning, and there are lots of things people have tried. It seems that every individual has to find what works for him. My first inclination is to try an IR light. It is inexpensive and has produced results for some guys. My question is where to buy the light and what power should it be? Are there any precautions I should take? Any other suggestions are welcome.
Thanks to everyone in advance and good luck to all.
Try the Levitra. Also, most of the men here take l-arginine (check the research section).
Welcome!!! Make sure to check the website (see the blue bar at the top of the page) and some of the research papers.
Liam
Any change with Bromelain- How much are you taking- what about the salve that your girlfriend made- Anything..
Would love to here!
Hopeful
Quote from: zigwyth on July 27, 2006, 01:19:22 PM
Thanks Rico, for the info. Like you said, it is somewhat hard to incorporate all the healthy foods daily that you have suggested. We unfortunately live in a fast paced society where processed junk is in the daily diet. I wouldn't mind some quick light recipes when you have the time to PM me. Since my girlfriend seems to have quite a bit of knowledge about alternative healing, I will try the Bromelain anyway, as well as Gota Kola, especially since she has taken such an interest in this and bought both items. I believe she is also going to mix up a salve/tincture to apply as well. I'm willing to make the sacrifice if this is what she wants to do. ;D She has signed on as a member now in the Ladies group and I'm very proud of her.
Thanks again- Zig the Twig
Has anyone noticed that the plaque arrives/worsens at times of great stress? Mine did, and eventually gave me a 90 degree upward bend. This was straightened by surgery - the Lue procedure with a venous graft. Prior to that, Potaba and Vitamin E had been ineffective in preventing further plaque.
Recently I took a beta blocker (Timolol) for glaucoma and even the tiny dose used in these eye drops caused the hang to be less full. I have since found out that this medication is not advised for those who have Peyronies. I have now changed eye-drops!
As beta blockers seem to reduce peripheral circulation, I have recently tried Ginkgo Biloba which, it is claimed, increases peripheral circulation. Sure enough, even at 2500 mg/day, it has given me a fuller hang - something to hold on to until the magic cure arrives!
Percival
"Subject line on this post edited for easy reference"
Hi Percy, welcome aboard! I know that when the body is under great stress disease runs rampant. My peyronies plaques seemed to increase slightly recently. I am going through a divorce, her idea, and am under great stress. I have been taking L-Arginine to promote good blood flow. I know that exercise will help reduce stress and promote better blood flow also. At night, I've been taking 25mg of Trazedone. Trazedone helps me sleep, and also causes night erections. The fresh oxygenated blood flowing into the penis at night is replicating what came natural at a younger age and not under so much stress. I just got my soma correct erection device and have started to use it to straighten the penis. A lot of fellows report improvement using this device. I believe that using antioxidants, increasing blood flow, reshaping scar tissue, and eating good with exercise, should show some improvements. Even if I don't see any, my body is feeling much better, and I'm not as stressed, because I'm too busy to dwell on it. When all else fails, I pray a lot! Keep the Faith...Blink
Blink
Thanks for that - I have some L-arginine on order. Also use a VED. Not sure about Trazodone - maybe I'll ask my doctor next time.
Percival
Percy, What I can tell you about trazedone is that it is far less expensive than the blue pills. If you are using viagra to achieve erections for treatment purposes, I would rather use trazedone. It is not habit forming, it does not have the adverse affects on blood pressure that viagra has, and you don't see blue when you take it. Any thing that affects my vision is not good for me. Trazedone costs about four dollars for a prescription. I don't think you can get one viagra for the same price. When I talked to my doc, I asked for 50mg tablets (the lowest dose), and cut them in half. I get two months supply of trazedone for 4 bucks! If you must take viagra for ED in order to have sex, then I guess that is what you must do. When I talked to my doc, I said that I wanted the trazedone for low level depression, to help with sleep, and for my peyronies disease. He gave it to me with no questions asked. He is aware that I'm a part of this group and that we as a whole have probably dug up more information than any of the docs. He has already referred someone to call me about peyronies. I believe that he will be one of the docs who will sign up for the forum. I will be visiting him again real soon to give him more info on OUR site. Keep the Faith...Blink
Blink
I appreciate your point but from reading this site it seems that Trazedone causes erections when you are asleep. This is ok for the healing process but would require the lady to help herself as you slumber on - unless the effect lingers when you wake up. Does it?
I believe that Viagra here in the UK costs about £8 for a 100 mg tablet - about US$15, so if you can get the real stuff for $4 that seems a good deal.
Percival
"Subject line on this post edited for easy reference"
FYI - The reason that Viagra can make one see blue is that it not only inhibits PDE-4 and PDE-5, but it also inhibits PDE-3. Levitra and Cialis are not affected by this problem. I also understand that all of these PDE-5 inhibitors can cut off oxygen to the optic nerve, which is not a good thing either. All drugs (and supplements) carry risks, that just comes with the territory.
"Subject line on this post edited for easy reference"
I hear ya. I'm in the process of trying to obtain a scrip for 100 mg Viagra since it costs the same as 50 mg Viagra (does that make any sense?) and therefore would effectively cut in half my cost of the 25 mg daily dosage my doctor suggested.
By the way, where did you hear you can get 100 mg for $4 a pop? I'd love to know. :) The cheapest I'm currently seeing is Costco which is about $10/pop.
"Subject line on this post edited for easy reference"
Years ago I was taking Trazedone for depression. I marveled at the fact that I could hold an erection that would not quit. I felt like a teen again! Once your body gets used to taking the stuff, you and your lady should be able to enjoy the side effects. I hope you guys are in shape, my wife had to call it off more than once! Keep the Faith...Blink
"Subject line on this post edited for easy reference"
Quote from: percival on August 21, 2006, 05:19:18 PM
Blink
I appreciate your point but from reading this site it seems that Trazedone causes erections when you are asleep. This is ok for the healing process but would require the lady to help herself as you slumber on - unless the effect lingers when you wake up. Does it?
I believe that Viagra here in the UK costs about £8 for a 100 mg tablet - about US$15, so if you can get the real stuff for $4 that seems a good deal.
Percival
"Subject line on this post edited for easy reference"
Percival,
I too am an Englishman, please keep an eye on this site as there seems to be a bunch of us that are willing to try it all,..... :D
I am taking trazedone, cutting the 50mg tabs in half and have noticed more erections during sleep....
My family doctor knows about my Peyronies Disease and realizes that my wife spends a lot more time researching this condition than he ever will so he gave me a 6 month pescription......
I'll keep you informed....
Mr. BLBC
Dear Mr. BLBC, You need to come clean my computer screen. The glass cleaner is on my work bench... Just to clarify, because THAT sounded sooo strange... DH and I at one time had a bunch of reptiles including several snakes. A friend of his has a couple of amazing pythons and they (the snakes) are often guests at our home.
And yes dear the subject of IR lamps were brought up recently. Thank you for the laugh!
"Subject line on this post edited for easy reference"
When your posts here are recorded in the Annals of Peyronies Disease, you will wish you had added a subject. The subject line is like the title of your literary work. Thanks for your help.
I forget all the time. Thank goodness for the "modify" button on your post. You can go back and change (or add ;)) anything.
This is sooooooo important for archiving purposes
Thanks a bunch!!!
Liam
"Subject line on this post edited for easy reference"
Hi All,
I came across this article and thought that I would share it with you.
NOW THAT'S A NICE SCAR!
Lessons on Scar Tissue
by Shari Aizenman, Massage Therapist
Scar tissue??? Doesn't sound so bad, does it? I mean, we have all cut ourselves, maybe had a surgery, and, of course, it needs to heal, so what? So EVERYTHING! That's what! Knowing the anatomy of scar tissue and what to do with it and about it can mean the difference between freedom and bondage.
Excuse me if I sound like I am on a soapbox, I am. As a massage therapist practicing for seventeen years, I have touched more scars than I can count. None of them have been exactly alike, although each of them has something in common; they want to hold on!
Scar tissue forms as a natural part of healing of all tissues in the body that have been damaged. Aren't you surprised that a broken bone can actually heal and possibly the healed part will be stronger than the rest of the bone? All of this happens because the inherent nature of the body is to be as whole as possible and to maintain homeostasis, which is a relatively stable state of equilibrium. So, what's the big deal?
In its desire to maintain balance, the body repair process is not as simple as it may seem. The human body's cellular structure is so well designed. Soft tissues are designed for strength as well as flexibility, and the cellular construction is what determines both. Where more strength is needed the cells are more dense and fibrous. Where flexibility is desired, cells are less dense and less fibrous. Where strength and flexibility are both desired, the structure is even more complex.
To insure the best performance in soft tissues, the cells are designed in rows and spirals. When there is disruption in soft tissue, like a cut, for example, collagen fibers form at the injury site in a manner I compare to mayhem. These fibers have only one thing in mind: STITCH and MEND!
Again, what's the big deal? Remember that inherent design process? When it is disrupted, the flexibility in the tissue is compromised. What does that mean to you? If you are an average healer, maybe not much, especially on superficial (close to the surface of the body) scars. But all scar tissue is not as simple as what it may seem on the surface. Scars can bind deeper tissues, tying its collagen fibers around organs and other layers of fascia, the fibrous connective tissue that surrounds all soft tissues in the body. This can mean a lifetime of bondage in some cases.
Aha! You have a scar, you say? And you want to know what to do about it? Don't fret! All scar tissue, no matter how old, can be addressed with a special type of massage known as friction or deep friction. The definition of friction in this case is: the movement of superficial tissue over deep tissue. Friction is done by locking the superficial tissue down over the deeper tissue and moving back and forth over the affected area. Scar tissue becomes more like normal tissue through the breakdown of unnecessary collagen fibers and with repeated treatments, and the effects are cumulative.
In this treatment, no lubricant is used. After treatment, I encourage you to use pure 100% cocoa butter to rub into your scar as frequently as you like. This will soften the scar and eventually, the scar will begin to disappear. You can begin treating your scar as soon as the stitches are removed, beginning lightly on a fresh scar, deeper on an older one. Pure cocoa butter can be purchased from a beauty supply or health food store. It will be in solid form, easily melted as you rub your fingers on it or rub it directly on your scar.
Here is the first step for using the "friction" technique. Look in a mirror and know exactly where the superficial scar's borders are. Palpate your scar. Do you have full sensation or is it numb? You need to get to know the feel to your fingers of the surrounding tissue and of the scar tissue being treated. Is your scar thick and bumpy? Or smooth in some places and irregular in others? Can you pick up your scar, as if it is free from the tissue beneath it? Or is it just stuck? The thicker and bumpier and more stuck the scar, the more work it needs.
Next, make a plan of action. If you can press your scar against a bony structure, here is the plan for you. Use your index and middle fingers to press your scar against the bony structure underneath. Using a back and forth motion, hold the scar down and move the scar over the underlying tissue. Go back and forth twenty or so times, using enough pressure to pull the scar tissue away, a little at a time, from the deeper tissue. Move two finger widths at a time over the scar until the entire scar is treated. When you are finished doing this "cross-fiber" friction, go over the scar again using a circular motion, pressing the tissue down as before.
If you can't press the scar against a bony structure here is the plan for you. Squeeze the scar between your index finger and thumb (adding your middle finger if possible), as if pinching it, lift and roll the tissue back and forth. When you have treated the scar fully this way, roll it again in circles between your fingers. You may need to utilize two thumbs or maybe even two index fingers on with two hands. The important thing is to get the scar between two moving, opposing forces to cause a friction reaction.
How often should you treat your scar and what should you expect with continued treatments? Touch your scar daily if not more often. You cannot touch it too much. Your scar is just like every other part of your body and needs love and attention!
No matter what your skin tone, in the beginning, you may notice that your scar looks reddened, and the tissue around it may also become pinker. This is from the increased blood flow to the area. Good for you!! Increased blood flow means increased oxygen (which is carried in the blood) and faster healing. Your scar may be a little sensitive due to the increased attention. If you feel a bruised sensation, back off your treatments to every other day. Use cocoa butter daily after treatment. Your scar may be numb but that will change and sensation should gradually return to most of it and the surrounding soft tissue.
Remember that touch is the ultimate form of self-love. This is a gift to yourself!!
http://www.webwhispers.org/pages/Headlines/Headlines_Apr04.htm
Also, perhaps this power jelq device could provide the friction and the foam rollers would be beneficial?
http://www.jelqdevice.com/about_the_JELQ/the_JELQ_design/
Cheers.
Of course, I am not affiliated with this company in any way.
The "device" made me think of this. Interesting. :)
Well I'm finally out of my sling after shoulder surgery, it's good to have my dominant arm back....
Mrs BLBC is out of town working on the VED....
I'm going to try a stimualted massage session twice a day and try to see if there is any change, I'm using Vitamin E cream instead of Cocoa butter......
Mr.BLBC
Did you have surgery for your Peyronies Disease- I am confused by this Post- Please let me know.
Hopeful
Quote from: percival on August 20, 2006, 03:13:57 PM
Has anyone noticed that the plaque arrives/worsens at times of great stress? Mine did, and eventually gave me a 90 degree upward bend. This was straightened by surgery - the Lue procedure with a venous graft. Prior to that, Potaba and Vitamin E had been ineffective in preventing further plaque.
Recently I took a beta blocker (Timolol) for glaucoma and even the tiny dose used in these eye drops caused the hang to be less full. I have since found out that this medication is not advised for those who have Peyronies. I have now changed eye-drops!
As beta blockers seem to reduce peripheral circulation, I have recently tried Ginkgo Biloba which, it is claimed, increases peripheral circulation. Sure enough, even at 2500 mg/day, it has given me a fuller hang - something to hold on to until the magic cure arrives!
Percival
"Subject line on this post edited for easy reference"
Hopeful, you may want to be careful with the IR lamp therapy. j and I were both trying this treatment. He even had a controller rigged up I believe with a thermocouple and dig readout. You can really cause more damage if you don't know what your doing. By the way, it didn't help either one of us. I myself have been a guinea pig because of this, but remember, knowledge is power. Do alot of research on a regimen for your Peyronies Disease. As always, surgery should be the last resort.
Zig the Twig
>>Did you have surgery for your Peyronies Disease- I am confused by this Post- Please let me know.
Hopeful<<
>>>Quote from: percival on August 20, 2006, 02:13:57 PM
Has anyone noticed that the plaque arrives/worsens at times of great stress? Mine did, and eventually gave me a 90 degree upward bend. This was straightened by surgery - the Lue procedure with a venous graft. Prior to that, Potaba and Vitamin E had been ineffective in preventing further plaque.<<<
Um, it seems to me not to be confusing. He had surgery.
Tim
Hello, I'm new to this site, but was wondering if anyone has used the Peyronie's Disease Institute and any of their treatment approaches? The host, T.R. Herazy suggests an aggressive treatment using many alternative treatments. Has anyone tried any of these with any good result?
Also, I can't figure out how to start a new topic. I looked at all the helps, but I don't get the New Topic button.
Thanks
Tim
There is no magic happening at the Peyronies Disease Institute. It appears to be a site promoting a book and some "explicit" "how to" sex videos on their "sister" site. I'm not trying to question the character of the owner of the site. I just believe all the info is out there for free.
I am always skeptical of "helpful" sites that sell something. Also, I never read one of the testimonials that said, "Thank You I am now 100% healed."
Thomas
Liam
Tim-
Herazy - talks a great game- cant show anything in the way of healing- He is underwritten by the producers of Neprinol- which is an enzyme0 very good-although very expensive- another company preyingoff of Peyronies Disease sufferes
Hopeful
As one who has been taking Neprinol for the last three or four months, I just want to sort of affirm some of what has already been said here. Personally I am convinced it is good stuff. That is why I have been taking it. But I am not convinced at this point that it can cure, or for that matter, even help with Peyronies disease. Neprinol is basically technology exported from India and marketed in the US by Arthur Andrew Company. My confidence in Arthur Andrew as a corporate entitiy in terms of integrity is not very high. They, like most big corporations these days, are mostly concerned about making money, not about making you their customer healthy. So Neprinol gets big bucks for promotion and lots of references to "research" that is for the most part invisible to the consumer. The question has occured to me more than once, if this stuff is so good, why don't they just give it away to some Peyronies sufferers and then publish their testimonials WITH a statement from their urologists? Why isn't their the slightest thread of objective evidence as to its effectiveness? Mind you, I'm not suggesting that it is not effective, for all I know it might be. But it is also very expensive. as I recall, around $150 for 300+ pills. Thats close to 50 cents a pill. Now, consider the fact that they tell you to take around 10 pills a day. Thats $5 a day worth of Neprinol, $35 a week $150 a month, $1,800 per year. One can, for example, compare Neprinol treatment for Peyronies at $5.00 per day, with the latest and greatest Diabetes drug from Merck with no end of published research to back its safety and effectiveness. That would be Januvia. This product, just released, costs $4.86 per day. Does that put things in perspective? For a 'drug' that may or may not work? As for Herazy, I buy from him becauses his prices are relatively good compared to other vendors, but he is indeed pushing Peyronies Disease sufferers to try and use everything in the book and some things that aren't. I think that shill is a rather harsh term, but I am not sure that this is a very wise approach to treating Peyronies Disease, and I am sure that it is certainly not at all cost effective. So when considering Neprinol, I think you have to take all of these things into account. I am not saying don't use it. I use it myself (ONE capsule per day). But just be aware that there is a lot of marketing hype going on in the background and don't let it overwhelm your common sense.
- George
Thanks George. That's why I am asking the question about this site. He of course publishes reports from satisfied customers. I'd also want to hear from others. You are taking Neprinol. Is is for Peyronies? Has it made any difference? Have you tried other successful options?
Thanks,
QuoteNeprinol Contains:
NEPRINOL® is a proprietary combination of Nattokinase, Serratiopeptidase, rutin, alma and other proteolytic enzymes specially formulated to assist and defend your body from the damaging effects of fibrin. As fibrin builds up in our bodies, it may cause many unhealthy conditions. NEPRINOL® can help keep fibrin and its harmful results under control.
source - http://neprinolenzyme.com/neprinol-ingredients.htm
nattokinase for sale, 90 for $14.89 -
http://www.vitacost.com/productResults.aspx?N=32+1003670
article Serratiopeptidase: Finding the Evidence (a table showing an overview of quite a few studies, some good, some bad)
http://www.jr2.ox.ac.uk/bandolier/booth/alternat/serrapep.html
Serrapeptidase for sale:
http://www.iherb.com/store/ProductDetails.aspx?c=Herbs&pid=NTV-10050
Notice whats in the the product called Fibrozym
These are just examples of less expensive alternatives to the "proprietary blends". I am not endorsing their use or the companies selling the product.
QuoteYou are taking Neprinol.
Yes, but only one per day, not 9 or 10 as they advise.
QuoteIs is for Peyronies?
I take Neprinol because I like the ingredients and am too lazy to take a dozen other pills to provide them. I had the Peyronies in mind when I started the Neprinol, but I am not taking it specifically for the Peyronies.
QuoteHas it made any difference?
Perhaps. I really don't know because I have been taking more different supplements than Carter has pills as the saying goes. My strategy has been to take a little bit of everything that either seems extremely interesting or has a degree of credible research behind it. The result has been a tremendous improvement in my Peyronies to the point that, for all practical purposes, it is pretty much gone and forgotten, although a close look would reveal that it has left its mark. Right now, I have quit all of those supplements to try to sort things out, and after a week off all the supplements, my Peyronies has not gotten worse. So I am extremely happy about that. I am convinced that the synergy behind all of those supplements has solved my Peyronies problems. But I am not sure which supplements contributed what to the general outcome. So the ultimate answer to your question is "I don't know". I certainly hope it helped because it cost me almost as much as everything else put together. So even if it helped, in retrospect, I'm not convinced that it was cost effective. I would really like to see some truly independent testing to either prove or disprove its usefulness. Until that happens I can only say yeah, I use it, but I'm not sure I would recommend it.
QuoteHave you tried other successful options?
I tend to take the PDI approach of using a barrage of supplements at once. Where I strongly differ with PDI is 1) I look closely at the research first, I don't just take a given supplement on the basis of marketing or testimonials, 2) I look closely at the potential interactions and side effects first, there are some very promising supplements out there that I won't touch with a ten foot pole due the risks they present, and 3) I steer clear of 'mega-dosing'. The "if a little bit helps, a lot should be the cure" approach is very seductive. Too much of anything can get you in over your head fast (and empty your pocket even faster). I should also add, that there comes a time when one should temporarily stop all the supplements and reassess things. Otherwise, you can easily loose sight of the forest for the trees. And as Liam points out, there are other products similar to Neprinol, like Fibrozym, which are much less expensive. While the difference in ingredients are small, the larger difference is that Fibrozym has much less marketing pizzazz behind it and its maker, at least in my eyes, exhibits considerably more integrity as compared to the maker of Neprinol. The maker of Fibrozym has been at this stuff for years and was one of the pioneers of enzyme therapy, yet, in comparison to the maker of Neprinol, they are very restrained in the claims and much more reasonable in their pricing. And I can also tell you that, in my opinion Nattokinaise, on its own, is a great product, and its pricing is a bargain compared to Neprinol. In fact, I have also been taking Nattokinaise. So hope this is helpful,
- George
Read Tim's post, he is right on...stem cell is way down the road...there are so many drugs out there, the FDA approved ones used in combination with VED, might be are best bet....if they keep looking into ED cures, and working with pentox, trazdone, Viagra etc...they will come out with something to fix this with a mechanical approach also like VED....we are closer with the drugs we have, it is just finding the right combination.....everyday I'm more convince in the oxygen given to your unit on a daily basis, Viagra and the other pde5 inhibitors are looking more promising...I have had good results with ginkgo and ginseng and VED, now I'm looking at taking it a step farther, pentox/viagra/arginine along with VED.... this can maybe be the best of both worlds, working your unit and giving it oxygen and the anti scarring effects...get the plaque to stable and remold it....if you just sit on your hands and wait for ten years of research on stem cells....well all I can say is good luck....
Rico
Rico, thanks for the nice things that you said about me.
It is hard to wade through all the posts here. For that reason some of us have been trying to compile a selection of either posts, or summations of what we have read here so that the newbie can go straight to the (more or less) consensus reports for each topic.Someone does not have to wade through, for instance, my long(winded) posts about how I think the VED might or might not work to find Old Man's posts on the protocol - instead, the protocols, a summary of how it works, and a list of sources for materials or VED's will be presented in a more or less BRIEF format.
For now, it makes sense to wade through old posts to catch up before asking for a lot of help here, IMHO.
Tim
I just saw this quote- what is Jelping???
Hopeful
Quote from: Liam on November 13, 2006, 08:28:37 AM
Kimo,
Jelqing is a term that has earned a questionable connotation. It also promotes some techniques I find a little dangerous. Maybe using terms like massaging or physical manipulation would be more accurate (unless you are referring specifically to jelqing).
HOpeful,
Don't mistake your anger at Dr. Carrol for other urologists who are really trying to help. As many have pointed out, this price is not unreasonable for a book in the medical field. Dr. Levine is doing a lot for us and conducting several new studies in explatory areas that others are not. I feel your anger in regards to Dr. Carrol, but other doctors are out there working hard for us, we can't shoot them down, or they will thrown in the tell and give up on us.
Jelqing (http://en.wikipedia.org/wiki/Jelqing)
anyone tried penishealth.com? I have done some google searches and found good things about it. Heres one good thing from a forum post: http://forums.men.style.com/thread.jspa?messageID=60132
www.penishealth.com
I know these exercises can be dangerous. I really think they are like VED use, I think they could really help heal Peyronies Disease. Basically your just making new cells to increase penis size. Anyone ever tried this site?
Quote from: howcanthisbe on November 16, 2006, 07:46:41 PM
anyone tried penishealth.com?
I know these exercises can be dangerous. I really think they are like VED use, I think they could really help heal Peyronies Disease. Basically your just making new cells to increase penis size.
HCTB,
Are you serious? Are you saying that as long as you have been here, you consider those good sites ??? They discuss penis pills ::)
Share the evidence that makes you think the exercises are like VED use, or that you are making "new cells".
In my opinion those sites are somewhere between laughable and lowlife preying on the desperate, insecure, unbalanced,
and ignorant, in society.
Old man im a bit confused. You sent me a private message a while back about exercises. I know the penis pills are fake of course. Look back in your sent messages. Here is part of the message you sent me:
"Yes, I did develop a stretching exercise, but it is done with the VED. Usually, it is recommended to be done after several months of regular VED use.
However, there is another stretching exercise that is called jelqing. It has helped a lot of guys, but it can add more trauma/plaque or nodules if not done correctly and with moderation.
I will give you what is called the basic jelq, but please be careful in using it. It goes like this: Lubricate your penis real well and then using either hand that is comfortable for you, form an "O" with your first finger and thumb like an OK sign. Slide this O down over your penis all the way to the base and as close to your body as possible, then squeeze fairly tight with the OK grip and slowly slide your hand up toward the head of your penis. When you have gotten the penis well filled with blood, hold this for about 15 or so seconds, release and repeat this cycle for 5 to 10 minutes based what is comfortable for you.
Just be careful not to use too much pressure, but enough so that the blood is held in the penis head area tight long enough to stretch the tissue, etc. Takes a little practice but it will fall into place real soon. It works best when your groin area is warm and/or wet, so you might get better results while taking a shower or hot tub bath. Practice doing it and you should see any results in a week or two. Have no idea how much if any results this will do, but others had said it worked well for them. I never did it for any length or time and saw no results."
So isnt this a simliar exercise that the penishealth site offers? Im just a bit confused, maybe I didnt fully understand the penishealth site? Im not trying to insult anyone, I jusy wanted some info on that particular site. I thought these type exercises could help if done right but also if done wrong could cause serious problems. Anyways sorry for the misunderstanding.
HCTD,
Many of us do things to help ourselves that are "unproven", and sometimes not even things we are aware of doing. Stretching my penis out periodically is something I have done for years. I try to remember to not do it at major public events - reaching in my pants and rummaging around can seem odd to others, for some reason.
I do not know of any data that states or proves that stretching out my penis in a lengthwise fashion is "helping". But I have known for years that, for ME, a sense of shrinkage is closely associated with activity of my Peyronies Disease, and that shrinkage is best battled by warmth, relaxation, exercise and tugging. Best of all have been erections and sex - but I pursued those with perhaps too much attention in years past (sometimes with negative consequences for my emotional health).
I love the VED because it is easy, it stretches me in all dimensions instead of just length (as tugging or Jelqing would do), and it does not involve screwing anyone willing to screw - NOT to imply I ever might have done that!
Tim
Thanks Oldman and Tim. I tend to be really optmisitic sometimes, so I just thought maybe those could help. I guess the VED is the clear best exercise to do. Anyways thanks for helping me out, its good to know this forum is here to keep me from running into possible damaging techniques. If it wasnt for this forum I would really be lost on battling this Peyronies Disease.
Quote from: howcanthisbe on November 18, 2006, 12:21:15 PMI tend to be really optmisitic sometimes, so I just thought maybe those could help. I guess the VED is the clear best exercise to do. Anyways thanks for helping me out, its good to know this forum is here to keep me from running into possible damaging techniques.
With all due respect to Old Man and everyone else here I'm not so easily convinced that it's "VED or nothing" when it comes to trying to improve Peyronies Disease. Here is my reasoning:
1. Based on the messages here, VED is about the only thing that offers hope for help in curing Peyronies Disease. Several people have mentioned VED as helpful and even though that's anecdotal it seems to trump anything else here in terms of usefulness.
2. Based on what I know of VED and manual exercises they seem to work in somewhat the same fashion (attempting to engorge the penis with blood and stretch the cells). So to say that the VED is OK and manual exercises are bad seems a little strange. I'm not saying that the VED isn't great but rather that I think we've closed the book on manual exercises too quickly.
3. There is at least one other poster on these forums who claimed that manual exercises *only* cured him of Peyronies Disease (although it ultimately re-surfaced later on).
4. While there are a *ton* of scammers trying to make a buck on penis enlargement sites/pills/etc., there are also some good communities dedicated to this with thousands of members claiming positive results. Certainly all these could be made up but if you take a look around these communities I think you'll claim to the same conclusion I did...that manual exercises can help to increase length and girth (although for me it was never worth the trade-off in time).
5. Some of the drugs that we are taking (including Pentox) aim to help improve circulation. However, that's ultimately what penile massage would do as well and would seem to be more targeted. Massage in general is one of the best things for improving circulation and so it seems that a steady diet of penile/groin massage would probably be good for Peyronies Disease sufferers. Yet, that has been talked about very little here.
6. We've spent countless time debating things like medicines and supplements and (IMHO) precious little time talking about what seems to me like a potentially promising area of Peyronies Disease treatment. Every time it is brought up it is almost instantaneously dismissed as "a scam to make people money" or "a great way to hurt yourself." However, as we all know, the VED also makes people money (as does all the drugs we're on) and you can definitely hurt yourself by doing the wrong things with the VED or your medication.
OK, I've rambled on long enough but let me say one final thing. I love this community. The fact that we've bonded together as a virtual group of brothers is amazing. And to be honest, I'm not going to stop here until we figure some stuff out that helps fewer people have to deal with this in the future. So I'd encourage us to keep an open mind to all sorts of new and potentially beneficial forms of treatment and to have honest and constructive dialogue about each, regardless of what the prevailing opinion might have been in the past.
D.Ocean you make some good points. Many members of the community here have been on other Peyronies Disease message boards years ago that in time became a bewildering mass of good thoughts, good ideas and trials and a good number of spam ads, spam posts and many outrageous posts with strange, goofy things claimed to fix Peyronies Disease. Some spam posts about jelquing (have no idea if I spelled that right) were posted there. This caused a lot of people to write off jelquing as a scam based penis enlargement thing. This may explain why some here appear skeptical, although there may be other reasons as well. A few pioneered the VED and gave it a chance to help with Peyronies Disease and reported good results so it is being explored as a reliable fix. A few more tried it and it worked for them and so on. Manual exercises could very well be a compliment to the treatments being explored here. Techniques would have to be tried, results recorded and then discussed. But someone needs to forge ahead and give manual exercises a shot; change techniques or make up new ones. This could become a stand alone treatment for Peyronies Disease or a complimentary therapy to the VED, but no one will know until someone tries it. I for one would love to hear that someone tried it and that it works by itself or maybe alongside VED therapy. It seems it would be a long term therapy (1 year or more) to produce results much like the VED, but we don't know until it is actually tried and given a chance.
I am considering trying it. I need to do a fair amount more research and also commit myself to a program. This also depends somewhat on whether I'm able to convince doc to write out a script for the VED next time that I see him. If he does then I might go that route first. If not, I may roll the dice with some manual exercises. I think done properly (with warm-up and not overdone) these could be effective.
Can someone shed some light on what VED stands for I have Peyronies Disease and i am new to the Forum
Jim
Jim,
Scroll down on this page of our website http://www.peyroniessociety.org/nontraditional.htm
The VED Dose this show so hope to fix Peyronies Disease?
I really don't understand how this my help Peyronies Disease.
has anyone seen improvement of Peyronies Disease with this device?
Thanks Jim
JTL,
There are over 700 posts on this forum on VED's. Rather than repeating that information, I recommend that you do some time reading. To make it easier for you we have started a section for new members to get a quick over-view. Thanks to Angus, the VED section is one of the sections that has been completed. Just go to this link and click on highlights of the VED topic. Start at the top and read down.
https://www.peyroniesforum.net/index.php/board,18.0.html
I don't know if anyone has seen this yet but, i decided to join the forum to simply post a message on a very interesting clinical trial. There is hope yet. Here is the link:
http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=109&STORY=/www/story/10-25-2006/0004458907&EDATE=
I would highly reccomend everyone to take a look before diving into the surgery option. Side note: i have had Peyronies Disease for 6 months. Cheers.
Wow thats great news. Thnks for letting us know. It looks like we have some hope now.
I read over the link posted by frankiewa. Does/has auxilium shown any hope for reducing shrinkage? I was a bit unsure of there info. Do they mean that if you contact them they will send you the product to try at home? I would be very keen to give anything a try.
frankiewa, jtl, gibson,
If you go to the Developmental drugs topic on this forum, you will find all kinds of info on Auxillium and the AA4500 drug. I don't believe at this time they are offering this drug as trials to anyone that requests it. It is in ongoing clincal trials that are under controlled conditions. crs
Hey all. Just wanted to post on something that I think is helping quite a bit. Starting a few weeks ago I begin doing a lot of self-massage in the groin/lower abdomen region. As anyone who has studied massage knows, it's incredibly helpful for increasing circulation. Since I couldn't find a (reputable :)) masseuse who would massage that region I figured I'd give it a go myself.
A few weeks later I'm hanging better than ever and having more frequent erections than I can remember in years. Even though I haven't noticed any big changes in Peyronies Disease yet I do think that improving circulation and bloodflow in that region would make a ton of sense (after all, that's what Pentox does right?) and I don't think this could hurt.
Another thing that's interesting (and unrelated to Peyronies Disease) is that there is a theory espoused by many bodyworkers that "issues get trapped in the tissues" and throughout my life I've struggled with anxiety and a good deal of guilt/shame. What I've noticed from yoga is that my hips/groin area is very tight and I was wondering if there was a connection. Then I came across an instructional massage DVD that talked about this very fact and helped to confirm my theory.
Anyway, I'm rambling right now but this seems to me something that most likely won't hurt and could produce some great conditions for the healing of Peyronies Disease. Let me know if any of y'all notice similar results to what I've noticed.
Thanks for filling us in. Actually I have talked to one other fellow (can't remember his name cause it was so long ago) who was doing the massage in the groin area. He at that point had not seen any results, but it was early on in the game. Keep us filled in and if your seeing more positive results as time passes. Are you taking any supplements such as l arginine, that may help your circulation goal as well. Are you on the pentox? When I started it I noticed an increase in bloodflow almost within days, it was pretty amazing you can tell its working or at least doing something. I think we should look more into yoga and the potential benefits from that as well.
ComeBackid
QuoteSince I couldn't find a (reputable ) masseuse who would massage that region
I would love to hear that phone conversation ;) ;D
It's interesting because I'm doing all those things (pentox/arginine/yoga). I guess I just noticed the fullness since I started doing the groin massage but my guess is that it's probably a combination of all of those things. I'm going to make 20 minutes of groin/lower abdomen massage a regular routine going forward. It's a pretty accepted fact that massage helps a lot with other forms of injury so I don't see why this would be any different.
Quote from: pudder135 on December 14, 2006, 08:05:31 PM
Thanks for filling us in. Actually I have talked to one other fellow (can't remember his name cause it was so long ago) who was doing the massage in the groin area. He at that point had not seen any results, but it was early on in the game. Keep us filled in and if your seeing more positive results as time passes. Are you taking any supplements such as l arginine, that may help your circulation goal as well. Are you on the pentox? When I started it I noticed an increase in bloodflow almost within days, it was pretty amazing you can tell its working or at least doing something. I think we should look more into yoga and the potential benefits from that as well.
ComeBackid
Is there a web site or something that describes the technique for massaging "that special area"? Are you saying to massage the area where the legs meet the body and the pubic area below the abdomen? What about the penis itself?
Hello All! A few days ago I spoke with a secreatary who works for Dr. Gerald Jordan; she told me that Dr. Jordan will be involved in a clinical trial regarding a medication for Peyronie's Disease - she explained it of being a medication that is injected. Dr. Jordan will begin these trials in Jan/2007. This was all the information she gave me.
Does anyone here know what medication this will be?
http://www.lifesciencesworld.com/news/view/12581
More info under:
Developmental treatments and drugs for Peyronies Disease (Still in trials)
In a hurry,
Liam
Danny,
I'm glad your noticing the same fullness I am, in better flaccid hang, and totally full erections, its like I'm on an ultra-viagra since I've started the pentox. I've noticed this fullness from the pentox alone. It would of been interesting if you had just started the pentox first to see if that gave you the fullness first, then added in the l arginine/ viagra/ groin massage. I just say this cause there are so many variables in regards to this disease, and treatments. What you may conclude(that your massage is causing fullness) could be totally different than what I conclude( that pentox is causing my fullness). Nonetheless my philosophy is if your on a protocol and anything is working- stay on everything and don't change a thing! Keep us informed if you continue to see positive results- us desperate folks like to hear the success stories! ;)
ComeBackid
Quote from: pudder135 on December 17, 2006, 01:02:18 PM
Danny,
I'm glad your noticing the same fullness I am, in better flaccid hang, and totally full erections, its like I'm on an ultra-viagra...
I'm sure it probably is a combination of factors. One of the reasons why I suspected that the self-massage was helping was that I noticed the dramatic increase in fullness within a few days of starting the self-massage (even though I've been on Pentox for several months). Also, when I am massaging that area I get very full even if I am not touching the penis itself. This could simply be a stimulation thing but either way it's cool by me. :)
As for technique, I'd offer two things. First, if you're not feeling pain you're probably not causing any damage. The other side of that coin is that if anything does hurt then I would immediately back off. Second, go to a massage therapist and get a deep tissue massage. Notice how they massage other parts of your body and then try to imitate that on the groin and lower abdomen area.
I'm actually contemplating starting massage school later this year because I think that there is a huge amount of benefit that massage brings to overall health. So I hope to know a whole lot more at the end of 2007 than I do right now! :)
I considered putting this in the light side subject. But I was doing one of my nightly searches on this topic and came across this page:
http://www.sinepenis.com/penis_enlargement/penis_techniques_level_2_straight_strokes.html
It seems completely ridiculous to me, but I'm curious is there any truth to this at all?
Absurdity in Abundance! ;)
Maybe I'll send everyone PM's with this link offering to increase their "manhood" ;)
Quote from: IrishB OCD on December 20, 2006, 12:39:48 AM
It seems completely ridiculous to me, but I'm curious is there any truth to this at all?
This specifically might be absurd but I still haven't given up on the theory that some of the "penile enlargement" exercises might be very helpful for Peyronies. I've spent enough time on some of the PE forums to be convinced that these exercises can and do work (at least for a significant number of people). Prior to Peyronies Disease it was never worth the investment of time these guys make. Now with Peyronies Disease I'm re-thinking things. And especially given the the positive experiences many have had with the VED and my own positive experience with groin massage I'm think that things that increase circulation/bloodflow might be very helpful (which is exactly what exercises like jelqing purport to do).
Bottom line = I'm not convinced yet but I also think that throwing the baby out with the bathwater when it comes to PE exercises might not be very smart for us.
Has anyone ever had any success using Potaba ? I have been taking 12 grams/day religiously for 3 months.In addition I am taking arginine,L-acetyl carnitine,lysine,proline,and of course vitamine E. I cannot say i have seen any improvement.
I am requesting that my uro get educated on Pentox and Peyronies,however he does not generate a lot of revenue from Peyonies 'customers" thus I seem to be the teacher here....
Comments ?........
Dave
IEDCL,
Welcome my friend. I was on acetyl l carnitine for awhile, it definately did not make my peyronies bend improve at all, but it did seem to take away pain. Right now I"m on the pentox and l arginine and doing the VED. The pentox is giving me very full erections and improved flaccid hang, its definately helping, whether its reducing the plaque or not I really don't know- can take a long time though, like a year for someone with calcifications. The experience you had with your urologist is not uncommon, I've experienced the same. What I would suggest is printing out the pentox study done by Dr. Lue and taking that in with you, or mailing it into your urologist. The L arginine you don't need a prescription for, and the viagra I don't see why your urologist wouldn't prescribe it. The more scientific studies you go in with, the more likely he will be to prescribe you the pentox. Just go in with a very respectful attitude, I know how difficult it can be to deal with a doctor or urologist who has an ego- on the other hand there are many doctors who really listen and are open minded about things, good luck.
ComeBackid
IEDCL
I took 12g/day Potaba for over 18 months and it did not cure Peyronies Disease. I can't really say that it did anything in my case.
However, I have read on this forum that it does help in some cases, particularly in preventing the disease from progressing further.
Should we conclude from this that Peyronies Disease sufferers should take Potaba for life in order to keep it in check? At a working dose of 12g/ day this would be a daunting prospect!
Good luck.
Percival
Quote from: DannyOcean on December 26, 2006, 09:14:11 PM
Bottom line = I'm not convinced yet but I also think that throwing the baby out with the bathwater when it comes to PE exercises might not be very smart for us.
Well - speaking of babies - if the VED really made our dick that much bigger, all we'd be able to do with it is put it over our shoulders and burp it.
Thought I'd share this with others in case it's helpful. I'm currently doing a 20 minute routine each day which consists of three things performed simultaneously:
1. Groin massage - Massaging the area around my penis similar to the way a masseuse would work on someone's shoulders or neck muscles.
2. Deep breathing - Slow and deep breaths from the lower abdomen.
3. Meditation - Just a simple counting of my inhales and exhales.
I don't have any evidence that these things are working but it would seem that #1 and #2 would help with circulation and all three would help with relaxation. If we assume that there is some connection with circulation and stress associated with Peyronies then this would seem to be helpful over time. Best part about it is that it's totally free. :)
Anyway, if any of y'all adopt my routine I'd love to hear how it goes for ya!
Anyone here ever tried Wheatgrass spray. I have heard it can heal scars pretty well sometimes. Also for those of you wondering how the mind healing was going with me....well it was going good. I saw some improvments. I was really really excited until I started having really weird things happen to me from too much energy. Anyways I am taking some time off, because getting too much energy can be scary. I don't wanna go into details of what too much energy can do to you, but I had to take some time off. Im gonna pick it back up in a few months. The energy work really works im telling you, my erections are harder and my dent is a little less noticable. Anyways I just wanted to see if anyone has tried wheatgrass spray.
Well... wheatgrass spray, groin massage, and mind therapy...
At least the title of the thread is correct - these are certainly alternative treatments!
time for bed... Tim
Quote from: Tim468 on January 14, 2007, 11:08:40 PM
Well... wheatgrass spray, groin massage, and mind therapy...
At least the title of the thread is correct - these are certainly alternative treatments!
time for bed... Tim
"All truth goes through three stages. First it is ridiculed. Then it is violently opposed. Finally, it is accepted as self-evident." -Schoepenhouer :D
Tell me more about wheatgrass spray. Any links to study that show its effectiveness?
Remember that all falsehoods are also appropriately ridiculed, so ridicule is no sign of truth. In fact, even that quote is false. I can think of many truths that were not initially ridiculed but rather applauded. ;)
Quote from: howcanthisbe on January 14, 2007, 04:43:51 PM
Also for those of you wondering how the mind healing was going with me....well it was going good. I saw some improvments. ... my erections are harder and my dent is a little less noticable.
HCTB: I find your above quote unbelievable and you without credibility in view of this quote from you on the BTC just yesterday under the topic "Mind to control P D"
QuoteI am only 23 and I know I can beat this. Im not even worried to be honest as of the last say 5 months. My condition continues to slowly worsen it seems. After I realized that my negative thoughts worsened my condition it made me realize that I could improve it potentially with the power of the mind. I have a few things I wanna try. First would be healing through lucid dreaming. ... I posted this on peyroniesforum.net and everyone thought I was crazy. ... My staus right now is my Peyronies Disease is slowly worsening.
If you wish to continue this type of posting I encourage you to do so on the BTC or in our off topic area where you will be given a little more leeway. You have exceeded the limits of inconsistency, lack of credibility, and posting on baseless claims with no theory, studies, or even Peyronies Disease claims to support them. This board is for posting that have at least some frail data to connect them to Peyronies Disease treatment.
Please seek the non-Peyronies Disease help that you need.
Hawk, yes I did post that yesterday. I didn't explain the whole situation in both post because the importance didn't relate to doing so. I saw improvement when I first started doing the mind healing methods. I recently had sex with a girl about 12 days ago and injured myself. I am slowly worsening again. However, the mind healing did make some improvments. I don't even know why im trying to explain myself, I have nothing to hide. I can try and try to tell you guys that the mind can help our conditions but none of you will believe me until I fully heal my condition. I see they removed my topic on the biospecifics forum.... wow. Im sick of people not believing me to be honest, but it only gives me more fuel to prove you guys wrong. Anyways with that said, please delete all my topics if you wish. I don't know much about the wheatgrass spray, I haven't really looked into it. Hawk, why don't you try Quantum Touch? You will see its all so real if you ever try it, you will feel it 100% sure. Its ok if you don't, leave it to me. I will prove you guys wrong eventually, right now I have to take some time off though.
BTC did not detete your post. It just got buried under 100 spam posts made yesterday (14th) Your post is on the 13th.
I am likely moving this exchange to the off topic area.
oh my bad Hawk. You can move this to off topic its cool. I will just keep trying and see what happens. I wish us all luck, something will come along to cure this mess.
Dear HCTB,
I find your claim to be likely untrue. That does not mean that mind power is useless or that you cannot heal. Rather, I think that *you* are unbelievable.
I'm not sure why I feel that way, but I am certain that if I devoted some thought to it I could explain it adequately. It boils down to consistency in thought and deed. There is so much in the way of avoidance of truth here, like not going to a doctor, making assumptions about what can work and what cannot work without direct experience of it... but in the end, we have to decide whether or not a person has credibility.
For instance, George has credibility with me. I do not know one thing about his "training" in health, science or biology, but what he says - when I check it out - has consistently proven to be of value to me. And, what he says has consistently proven to be true. And when he has mis-spoken and had it pointed out, he has quickly recognized and admitted it. These things demonstrate credibility to me. But it is a fact that he could be a pimply teenager with nothing better to do than to screw with us here and he is making it all up!
But I doubt it...
So perhaps you have Peyronie's Disease (it seems that you probably do), and I accept that you are determined to take care of it using alternative methods, including quantum touch therapy, postitive thinking and maybe wheat grass spray (or something like that). But see, even in that out in left field realm, there are ways to be more believeable. When I was twentyfive, I read "Anatomy of an Illness" by Norman Cousins, and how he fought off ALS with positive thinking and laughter and by God if I did not start to visualize a straighter penis and to watch Marx Brothers movies to laugh hard, and all the other stuff he recomended. It didn't make my Peyronies Disease better, but at least I tried. Who knows, maybe what you want to try will help you. But I don't see much a LINK from what you want to do, to healing Peyronies Disease, explained.
Tim
Ok Tim. I see you have tried some of these methods. The problem is really visualizing something and truely believing it is really hard to do. I do not expect to do it within my first year. Quantum Touch on the other hand is a bit easier for me. Anyways im sorry if you do not believe me. Why would I lie? Im not trying to sale anything. I really don't even wanna talk about this anymore. Im a bit hard headed I admit, but I won't stop until I have given it my full 100 percent. Like I said before... I saw improvments in my conditon for a while before the recnt injury. Lets not discuss it anymore, im sorry I brought it up. I will only post now about other alternative methods. I know everyone is sick of hearing about this mind healing.
I am new to this forum, and am wondering if anyone has tried the herbs advertised for Peyronies Disease on the web. One site offers a 60-day money back guarantee, so it seems like there's not much to lose there except time. Bit I remain skeptical, especially since no one on this forum has mentioned it.
Also can anyone let me know why the Thacker Formula thread is no longer active. Is that because people have given up on that method?
Many thanks for all replies.
Watch out for money back guarantees. I know of at least one operation that was offering money back guarantees and selling up a storm. The only problem was it turned out they were operating out of a mail drop and when everybody came back for their money after discovering the products worthless, the seller had vanished. I am not saying this is the case with this operation, but I am really, really, skeptical of near miracle cures for Peyronies. Peyronies is an extremely difficult disease to treat, let alone cure. I strongly suggest that if you are really interested in what works in terms of herbs and supplements, that you go to the supplements thread and read it from beginning to end. You will learn more there than you will ever learn from websites that are trying to sell you on a treatment plan. You are really desperate to get your Peyronies under control and they are just as desperate to get your wallet under their control ... BEWARE!!!!
- George
Quote from: jwelw on January 16, 2007, 05:47:10 PM
.........
Also can anyone let me know why the Thacker Formula thread is no longer active. Is that because people have given up on that method?
Many thanks for all replies.
The Thackers/DMSO formula has been cussed and discussed for many years now. A very few reported improvement with its use, but the general consensus over the years is that its efficacy is "busted", or doesn't work for Peyronies for the vast majority. It has been tried by many desperate men with Peyronies, myself included (long ago), and for me personally the only change it made in me was to cause bad breath. The formula was a mess to mix and use, and there are many unanswered questions on how DMSO affects humans that absorb it (long term or otherwise). There are many other ways outlined here in the forum to attack Peyronies Disease with more credibility, improvement and safety for the user, IMHO.
Hi All,
I can say without reservation that the Thacker formula does indeed work. I use it in conjuction with the ved and the pav cocktail and they seem to work synergistically.
I was abroad over the holidays and I only took my pav cocktail ingredients and had to leave my ved and Thacker ingredients at home and my condition got markedly worse. The key to Thacker is that you must use it regularly and for 2 hours every day. It is not difficult to prepare or use and it does soften the plaque, I have no doubt of that.
Cheers.
soxfan:
When you say your conditon got worse? Can you tell me more on that.... also you have been using the dmso(thacker), now for sometime, does one have to use it for ever...
I did use it for awhile, and with the dmso cream got the same reaction I felt from the pav or gingko, better hang ect.... which to me was more blood flow into the area, and I must admit when I used the thacker with the dmso I was getting some results... when I mixed the pentox in with the mix is when I found I had problems with the rash looking spots on the head of my unit, I discontiue the dmso and ved and stayed on the pav, which now I can say my hour glass is a little worse.... from my experience with the dmso, it seems to add blood flow(circulation) to the effected area and is known to soften scar tissue... but once again I don't feel comfortable in putting this in my system for the rest of my life.... if you can soften the plaque with the dmso and then remold with the VED, then this is good, but haven't you been doing this now for sometime, why did it go backwards again?
Rico
Hi Rico,
I noticed that when I was on holiday without my ved/Thacker that my plaque became harder and I had less bloodflow. I was away for a few weeks and next time I will just have to risk being emabarassed at the airport and take the ved and Thacker ingredients with me. :-\
I have been using Thacker for many months now but Thacker said that it might be necessary to use it for up to 18 months. In any event, it works. it's cheap and easy to use so I will stick with it, plus ved and pav cocktail.
Cheers.
Ok I was about not to post this because I know you guys are tired of hearing about my weird ways of potential healing. My results doing this method are just too good not to post. I was googling and found something called Kegels. I know everyone here has probably heard of them and tie them into penis enlargment scams. Well I was reading a article that was describing what muscle to flex to do this exercise, its the muscle that stops urine flow when you are urinating. Like you know how when you stop midway through urinating and it stings, well its that action. I decided to try it for a few days and all I can say is wow! I feel like I own a new penis! I mean its almost like my penis is back to normal slash the dent. My penis now has big veins on it and all just like before. I have only been doing this for 4 days and I swear its the most incredible results ive ever seen for any treatment ive tried. I don't know if alot of guys here have tried this or not, but I swear my erections are rock hard now. Its only been 4 days but everytime I try to get hard im rock hard now, a huge difference from before. Maybe this works good on me for some reason? I guess everyones different.
HCTB
Evey man that ever had a radical prostatectomy (several men on this forum) have done kegels to regain urine control. I have done many thousands of them. I can assure you they have nothing to do with Peyronies Disease. As a matter of fact, men with prostatectomies (the same men doing kegels) have a much higher rate of Peyronies Disease than others. All kegels do is isolate and strengthen a specific muscle. No muscle can be strengthened in a few days so your perceived improvement and vein development in the last few days is not connected to this very common exercise.
I have also never had it sting when I cut off a urine stream so you may want to have that checked.
Hawk are you trying to say Kegels can cause Peyronies? I can promise you my erections are way better then before the exercises. I have read from other people that also experience this after only a few days of the exercise. So your saying Kegels do not help increase blood flow to penis also? Do Kegels give you a harder erection?
Quote from: howcanthisbe on January 21, 2007, 05:00:56 PM
Hawk are you trying to say Kegels can cause Peyronies? I can promise you my erections are way better then before the exercises. I have read from other people that also experience this after only a few days of the exercise...
HCTB, Read! I never said they cause Peyronies Disease. They have nothing to do with Peyronies Disease plaque period. They are a non-Peyronies Disease issue and as such I will not be commenting further on this subject. This is becoming the "HCTB Cure of the Week" topic followed by admissions to setbacks and worsening of your condition.
I am not trying to be mean or rude, but I seriously wonder if you have OCD, Bi-polar, hyper-active, or related issues causing you to feel "over energized", mood and perception swings, and an erratic frame of reference? I am very close to family members with such issues. I also have a niece that offers counseling for such disorders, (although counseling alone is not sufficient) which is what makes me ask.
Feel free to PM me.
ok guys, I will take your advice. I do not think I have any mental disorders Hawk, I do think im paranoid however about curing my Peyronies Disease. Im just curious, do Kegels give you better erections though... like harder ones?
QuoteFrom Medscape Urology
Kegel Exercises and Erectile Dysfunction
Question
How effective are Kegel exercises for a patient who is suffering from ED caused by leaking veins? What additional treatments should also be considered?
Response from Ira D. Sharlip, MD
Clinical Professor of Urology, University of California San Francisco
Kegel exercises have no efficacy in the treatment of erectile dysfunction (ED) caused by corporovenous occlusive disease (CVOD or "leaking veins") or any other abnormality[/b]. There is no significant evidence that Kegel exercises can produce any durable physiologic change that would improve erectile function.
CVOD is almost always a manifestation of another underlying cause of ED, such as cavernous arterial insufficiency or cavernous fibrosis; it is very rarely a primary cause of ED. Therefore, most cases of ED cannot be treated by treating CVOD; the underlying abnormality must be corrected, if possible.
In the rare patient whose ED is due specifically to CVOD, surgical or radiologic ablation of the specific "leaking veins" may be considered, but these patients are very rare. In the great majority of men with ED whose CVOD is a result of other pathology, an oral phosphodiesterase should be tried as first-line therapy. If this is unsuccessful, second-line therapy with intracavernous injections, intraurethral alprostadil, or vacuum devices can be tried. Third-line therapy with penile prosthesis implantation is also an option if first- and second-line therapies fail.
Posted 01/17/2003
Source: http://www.medscape.com/viewarticle/447640
Dear Old Man - that was Hawk, not me, advising he not count on Kegels to help him. Liam's post helps confirm that, and God knows I agree with what they have said.
HCTB, if Kegels have given you firm erections within 4 days, then your erectile dysfunction is due to psychologic matters and not due to physiologic issues. Veins do not grow in four days, but a firmer erection for any reason may lead to some venous engorgement (and more easily observed veins than when your penis is flaccid).
Hawk, I agree with your questioning HCTB's labile manner here - it is what I was trying to tell him about how anyone might interpret another's words here (and how seriously we might take them). It is also fairly likely that chronic or acute anxiety is more likely to be happening than major mental disease. But hopefully, what HCTB can take away from us is a WAY to handle the stresses he has in his life - and develop rational strategies for handling them (like going to a doctor instead of squeezing his ass cheeks together)(my version of a Kegel).
For all of that, I am always interested in any thoughts about erectile function and Peyronies Disease that folks have.
Tim
Tim thanks for the help. I will listen to you guys, im taking a easy on kegels just in case. Is venous engorgement bad? What is venous engorgement? Thanks
venous - vein;
engorgement - filled with blood
QuoteMy penis now has big veins
When you google sarcoidosis which pentox is sometimes used for, they say pentox is a immune system suppressant..... with are immune system out of whack, why would we want to take this if it is the case? I started the pentox in Nov. got the flu in Dec. and just getting over it, still feel weak...
Rico,
A comment or two and a total shot in the dark. Your comment interests me because having recently had prostate cancer, I would never want to take a general immune suppressant.
If pentox is indeed an immune suppressant one of two possibilities exist. Peyronies Disease is an autoimmune disease (meaning our immune system attacks our own body in a specific way) in which case suppressing may actually help. The second possibility is that pentox stops the cascading conditions that result in Peyronies Disease through TGF1 etc. The fact that it may suppress the immune system is simply a tolerable side-effect that does not impair or offset its primary benefit.
I hesitate to respond because this discussion really belongs in "Oral Treatments." My apologies to Hawk.
Regarding the immune suppression, you could take (stay with me here, I'm not just grasping) Bee Propolis. Extensive reading about it on Pubmed reveals various studies showing it has Anti-Biotic, Anti-Viral, and Anti-Inflammatory properties, and also inhibits NO expression through the iNOS pathway (i.e. the "bad" way).
Granted, there are also the two or so Cuban studies that have always been regarded as
questionable, showing Propolis directly helps Peyronie's.
However, even disregarding the Cuban Peyronie's studies, there still seems to be science that shows it may help you not get (as) sick, and may even be helpful to us Peyronie's sufferers because of its Anti-inflammatory effect and iNOS inhibition. See quote from here (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16902858&query_hl=1&itool=pubmed_docsum):
QuoteThis extract, which at low concentrations induces anti-inflammatory and analgesic effects in mouse models, presents a high content of flavonoids, known to inhibit inducible NOS (iNOS) activity. These data taken together led us to reinforce the hypothesis in the literature that the anti-inflammatory effect of propolis may be a due to inhibition of iNOS gene expression, through interference with NF-kappaB sites in the iNOS promoter
And here (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15036463&query_hl=1&itool=pubmed_docsum):
QuoteThese results indicate that EEP [ethanol extract of propolis] exerts its inhibitory effect on the IL-1beta and iNOS gene expression in J774A.1 macrophages at the transcriptional level. Tested flavone derivatives contribute to the anti-inflammatory activity of propolis
And here (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=11734336&query_hl=1&itool=pubmed_docsum):
QuoteSince nitric oxide (NO) synthesized by inducible nitric oxide synthase (iNOS) has been known to be involved in inflammatory and autoimmune-mediated tissue destruction, modulation of NO synthesis or action represents a new approach to the treatment of inflammatory and autoimmune diseases. Caffeic acid phenethyl ester (CAPE), an active component of honeybee propolis, has been identified to show anti-inflammatory, anti-viral and anti-cancer activities. ... These results suggest that CAPE may exert its anti-inflammatory effect by inhibiting the iNOS gene expression at the transcriptional level through the suppression of NF-kappaB activation, and by directly inhibiting the catalytic activity of iNOS.
Anyone with knowledge in this area, feel free to correct my reasoning. There are many who are more knowledgeable than I in this area.
Personally I don't feel Pentox suppresses my immunse system. I've been on it for almost 4 months and have had one very minor cold which I recovered from quickly (I also had a flu shot). Meanwhile my Peyronie's condition continued to worsen during the first 2-3 months.
Googling propolis may miss some of the data out there since the Cuban studies were done using "propoleum" - which is the same thing (which I finally figured out using wikipedia). It makes sense to use it for Peyronies disease, as does taking Baikal Skullcap etc - all of these herbal remedies that have been studied in Peyronies formally and published in the peer reviewed literature.
What is harder is finding Baikal skullcap or propolis or Korean Red Ginseng that is identical to that which was used in the studies.
Anything that downregulates the expression of TGF Beta 1 and Tumor Necrosis Factor alpha is, by definition, an immune suppressant. That is a far cry from something that shuts down T or B cells, for instance (the kind of drugs used to prevent rejection of transplanted organs). With those sorts of immunosppressants, we see lingering colds or the development of lifethreatening infections sometimes. Not with drugs like Pentox.
Tim
Being Paranoid is understandable, I have Peyronies Disease myself and when you live your life with your manhood intact so to speak and then this comes along(Peyronies Disease), how can it not throw someone for a loop. Like i tell my wife, when she says she understands, I say how can you no matter what happens you can always lay down and have sex even if you dont want to. But a guy with this cant depending how bad it is. So it yeah I am a little paranoid also.
Quote from: howcanthisbe on January 21, 2007, 07:28:39 PM
ok guys, I will take your advice. I do not think I have any mental disorders Hawk, I do think im paranoid however about curing my Peyronies Disease. Im just curious, do Kegels give you better erections though... like harder ones?
I have had a curvature/twist for about 5 months now, can someone recomend me something? I dont feel any calcification, should I take viagra before bed?? If I was to start anything it would be through a doctor not from some shonky online pharmacy.
Thanks.
I used a combination of grape seed extract (CVS grape seed plus) combined with 400 IU a day of vitamin E that straightened a slightly curved/twisted penis within a couple of weeks. Don't use it if you have inflammation, and don't use it for weeks on end because it felt like if I used it for several days in a row that I had a feeling of almost having too many erections. Additionally, it temporarilly doubled the girth of my erections and added some length. So you don't want to be engaging in sexual activity probably while using this because the increased size might expose you to more injury due to a thinner tunica during erection.
Quote from: tdsc on March 13, 2007, 04:04:12 PM
I used a combination of grape seed extract (CVS grape seed plus) combined with 400 IU a day of vitamin E that straightened a slightly curved/twisted penis within a couple of weeks. Don't use it if you have inflammation, and don't use it for weeks on end because it felt like if I used it for several days in a row that I had a feeling of almost having too many erections. Additionally, it temporarilly doubled the girth of my erections and added some length. So you don't want to be engaging in sexual activity probably while using this because the increased size might expose you to more injury due to a thinner tunica during erection.
Was this the GSE http://www.cvs.com/CVSApp/cvs/gateway/detail?prodid=329887 ?
I am gonna try your regimen, so I want to use the same product.
Yes, that's it. I may not have been taking vitamin E at the time I noticed a straightening (so you may want to experiment with just grape seed by itself for a few days), but I remember that when I took Vitamin E with it, I noticed a large increase in size (I may have ramped up the vitamin E above 200 or above 400 IU later and noticed larger increases in size). I wasn't taking anything else at the time.
Quote from: tdsc on March 13, 2007, 04:14:11 PM
Yes, that's it. I may not have been taking vitamin E at the time I noticed a straightening (so you may want to experiment with just grape seed by itself for a few days), but I remember that when I took Vitamin E with it, I noticed a large increase in size. I wasn't taking anything else at the time.
Maybe due to increase blood flow from thinning of the blood wich vitamin E does.
CVS doesnt ship outside the US, so I am gonna haveto settle for standard GSE, do you think that will do?
Many of us have taken both grape seed and vitamin E without any change in our penis length, girth or Peyronie's lesions.
I advise reading through the archived threads here for good summaries of therapeutic options. The problem with individual accounts of "success" is that we have no idea if the success is random or due to the intervention that is described.
Finally, I would strongly advise FOR taking anti-inflammatory medications or vitamins when one has inflammatio or probable inflammation. I am uncertain about the logic presented here in stating to "hold off if there is inflammation" - that makes no sense to me at all.
Tim
Crook-
The grape seed should be alright. If not, I would try getting the individual ingredients as well (bilberry and green tea extract). The test would be, take 2 grape seed (100 mg) on an empty stomach and see if there is a feeling of blood rushing into the genital region 15-30 minutes after taking it. I don't recall other supplements like arginine or pentox give this feeling. If it does, then it would be alright to take it with meals as all you need is the medication in your system. The reason you don't want to take something that engorges the penis while you have inflammation in my opinion, is that it stretches an injured tunica that is trying to heal. Stretching or rubbing an injury is bad for collagen formation. Anti-inflammatories will probably keep down the swelling initially but you don't want to take them for extended periods cause they slow healing and they engorge tendons, etc. with blood so that they become more susceptible to inflammation and injury. I'm talking about experience with ibuprofen.
Also, if others did not have the same experience with grape seed and vitamin E, it is possible that its the formulation of grape seed plus at cvs pharmacies that you should try. I posted on the other forum because I heard somebody else used grape seed, they didn't say anything about what I was talking about, but after posting my experience and listing the cvs brand, a week later somebody else wrote back saying they had a similar experience.
tdsk:
You have made several statements that grab my attention as a Peyronies Disease patient because:
A. They are counter to my experience
B. I have never heard anyone else suggest such experiences after reading about 20,000 patient posts
C. there is no medical literature or sound physiological explanation offered
Tim has addressed some of these.
1. Anti-inflammatories "slow healing and they engorge tendons, etc. with blood so that they become more susceptible to inflammation and injury."
2. Grape seed extract increases size of penis
3. Grape seed extract gives a dose related transfer of blood to the penis
4. the logic that blood flow should only be increased after Peyronies Disease enters the non-inflammatory chronic phase. This is counter to every treatment protocol using pentox, viagra, VED's and alternative nutritional treatments. Further, blood flow is shown to inhibit transforming growth factor 1 (TGF-B1) https://www.peyroniesforum.net/index.php/topic,130.0.html
Since your points are such a departure from "conventional wisdom" I think your statements beg for elaboration. If they prove true, they are very important. If not, we need to know because they are contrary to sound advice. I would appreciate you responding to these 4 numbered points with any objective evidence that you may have.
I would say that using grape seed while you have inflammation of a tendon would aggravate it. Using anti-inflammatories like advil, it is also a blood dilator, and while using it and walking a lot would aggravate it. If you're not moving, anti-inflammatories are helpful at times. My experience with advil is that it prolonged healing time. Blood flow may be helpful in peyronies but not the extent that the area becomes so engorged that it stretches the area causing pain or further progression. I would not want to use grape seed if I had a recent injury because the larger and stronger erection would stretch the area.
As to points 2, I recently updated my post below, and it was my experience and one other person that it temporarilly increased the size of the erection. 2 pills of cvs grape seed plus was stronger. The size increase with vitamin e and grape seed was dramatic. The size increase was crazy and that's why I cut back on the vitamin E at the time because I thought it was too big, and I'm not joking. As to point 4, I would be careful with using anything in the beginning other than vitamin E, if that, if the injury is not too big, as to my experience. Perhaps using some kind of blood flow enhancer is beneficial. I wouldn't go overboard on it. The studies with viagra and arginine were on people who had problems in the penis due to an extended erection that would have left fibrosis throughout if they hadn't used the medication. However, even with using the medication, this group of people had to use medications to obtain an erection. With peyronie's people have a tear or a wrinkle in the tunica that causes inflammation or causes a plaque. I have a small tear or wrinkle near the head that is not a plaque. I have a plaque at the base. With a tear, you don't want to have any sexual relations or masturbation for quite some time, perhaps two years or for as long as you have no trace of pain, to let that area heal. Leaving the area alone is probably the best advice. Using grape seed and vitamin E (I don't remember if I was using vitamin E at the time I noticed straightening, but I used it in combination for a short period later) straightened a slightly curved erection, while at the same time, it stimulated erections. I probably used grape seed of and on for a little less than a month.
tdsc,
With all due respect, you offered NO evidence for any point except a personal story about your erect penis dramatically increasing in length and girth from a dose of a very common food supplement that makes no suggestion of such an effect. I find this claim fantastically unbelievable. I do not believe any substance on earth can result in this response so I am left bewildered by this claim. Clearly your tunica did not instantly become capable of a greater stretch. Do you mean that your erections had become small and flaccid and this dose returned it to normal ???
On the other points you simply say things such as you think anti-inflammatories caused inflammation and slowed healing in you. You offered
no evidence on how you know they did. You offer
no medical evidence on this ever being observed in a patient, you offer
no physiological rational on how this takes place.
I need far more reasoning for my course of action then
QuoteI would be careful with using anything in the beginning other than vitamin E, if that,
Statements like
QuoteWith peyronie's people have a tear or a wrinkle in the tunica that causes inflammation or causes a plaque.
are at best a very deceptive partial truth, at worst just flat wrong. Many people have NO injury prior to Peyronies Disease. No researcher has every connected a wrinkle anywhere to Peyronies Disease.
tdsc, I have no ax to grind other than for truth and accuracy. I have learned many new things on this forum through presentation of evidence. Truth can stand examination and cross-examination. In fact, truth thrives under such examination. Your lack of evidence and rational leave me with no choice but to dismiss your statements and conclusions as misinformation until something is offered to actually support them.
Dear tdsc,
I am sorry, but almost nothing that you wrote makes sense to ME. Where do I start?
"I would say that using grape seed while you have inflammation of a tendon would aggravate it."
There are NO data or rationale to support this.
"Using anti-inflammatories like advil, it is also a blood dilator [NOT TRUE] - do you mean vasodilator? Do you mean blood "thinner"?, and while using it and walking a lot would aggravate it." Aggravate WHAT? a tendon? Anti-inflammatories combined with ice, compression, rest and stretching are a known and accepted treatment for tendinous or muscular injuries.
"If you're not moving, anti-inflammatories are helpful at times. My experience with advil is that it prolonged healing time."
Your experience is not common or even near to what is accepted as the role of NSAIDs in recovery from injuries or inflammation.
"Blood flow may be helpful in peyronies but not the extent that the area becomes so engorged that it stretches the area causing pain or further progression."
Not only is this counter to what most of us believe, but it is also counter to an increasing body of evidence that shows that early erections and use of the VED are crucial in preventing contracture of post-surgical penises that have been repaired with grafts for Peyronies Disease. Reoccurance of curvature seems to be quite closely related to avoiding erections. My personal experience - having gotten Peyronies Disease when I was 21 or so - is that frequent erections adn use of my penis in intercourse "held it at bay". My personal experience is that it got worse when I became single and my sex life slowed down.
"I would not want to use grape seed if I had a recent injury because the larger and stronger erection would stretch the area."
I discount your tale of a much larger erection - I see no way that a tunica albuginea (TA) can suddenly become so much more compliant that it allows a huge erection. Just to be sure, I am going to go buy some more grape seed extract and vitamin E and take it on an empty stomoch! ;)
"As to points 2, I recently updated my post below, and it was my experience and one other person that it temporarilly increased the size of the erection. 2 pills of cvs grape seed plus was stronger. The size increase with vitamin e and grape seed was dramatic. The size increase was crazy and that's why I cut back on the vitamin E at the time because I thought it was too big, and I'm not joking."
I do not know whether to think that you are making this up, or if you simply had weak erections and finally got a real big and strong one for the first time in years. I do not think that the TA can suddenly become more stretchy - it defies physiology and simple logic. For one thing, I imagine that the chemists who market grape seed MIGHT have emntioned such a side effect prominently!
"As to point 4, I would be careful with using anything in the beginning other than vitamin E, if that, if the injury is not too big, as to my experience. Perhaps using some kind of blood flow enhancer is beneficial. I wouldn't go overboard on it. The studies with viagra and arginine were on people who had problems in the penis due to an extended erection that would have left fibrosis throughout if they hadn't used the medication. However, even with using the medication, this group of people had to use medications to obtain an erection."
Finally you say something that I agree with!
" With peyronie's people have a tear or a wrinkle in the tunica that causes inflammation or causes a plaque."
Not quite right...
"I have a small tear or wrinkle near the head that is not a plaque."
It seems that you have something wrong near the tip that is not easily palpable - that is common for us. Soetimes Docs don't feel it - but if it causes a deformity, then it is probably abnormal.
" I have a plaque at the base. With a tear, you don't want to have any sexual relations or masturbation for quite some time, perhaps two years or for as long as you have no trace of pain, to let that area heal."
Again, this is advice, and it is not clearly good advice, It does not fit with what worked for me, nor does it fit with the goals of most men here, which is to resume or continue a normal sex life.
"Leaving the area alone is probably the best advice."
I strongly disagree - see above.
"Using grape seed and vitamin E (I don't remember if I was using vitamin E at the time I noticed straightening, but I used it in combination for a short period later) straightened a slightly curved erection, while at the same time, it stimulated erections. I probably used grape seed of and on for a little less than a month."
Given that your experience fall so far apart from the norm here, and that your curve was so easily fixed, and since grape seed and vitamin E seemed to help you achieve bigger erections, I interpret that data differently than you do. It sounds to me like you had curvature associated with weaker or smaller erections than normal, and when things got better (either healed, or perhaps simply stronger erections) then the curvature went away.
That is most consistent with a mild case of Peyronies Disease combined with a mild case of ED. It is not consistent with a miraculous cure of a tough disease that most (if not all) of us struggle with here.
PLEASE hear this for what it is - I am trying to share with you the benefit of training in scientific thinking and a life of work that includes intellectual rigor. What you have been saying does not make sense. I want you to see that and to see why it does not make sense. Saying it again in different ways does not help make it sensible.
Tim
The grape seed extract I believe aggravated or inflamed an already inflamed tendon even more. I've read on tendonitis sites where advil slows down mitosis or some such in cells and can prolong healing in tendonitis, and these are legitimate sites.. I don't disagree with taking advil at the beginning, but my experience with it, was that it inflamed the area due to its blood thinning quality so that you had to stop walking from the burning or aggravation. It reduces the efficiency probably of the tendon because you have too much blood flowing through it. If you've ever had tendonitis and used advil or a vasodilator, you would know that it made it stiffer and more painful to walk. When you cease the medication, the tendons flow smoother.
Erections are probably good. However, people have erections at night and this hysteria of you have to have frequent daily erections to improve function is not always wise. If you're not having hard erections at night, that means probably you are in an active phase of the disease, and I wouldn't add erections that escalate pain. Every time I engaged in sexual relations, even of the lightest kind, always resulted in either girth reduction or length reduction. Pain was immediately evident afterwards, at first a dull light pain that escalated to a greater pain and red inflammation. One time this red inflammation spread around the penis and shortened it by some degree. I had sexual relations on the order of maybe 5 or 6 times after the injury and I definitely associate each act with immediate inflammation. When I first saw the urologist he said take it easy. I did, with very light intercourse and it caused inflammation. I went to the emergency room after I was afraid that I had a ruptured penis possibly, but they said it wasn't, and they advised to stop all sexual relations, which I have, and I have had no further progression of the disease. I have been careful not to aggravate it, by wearing light clothing and such like polyester or wool, as opposed to jeans or khakis. I still have light pain, but that has gone down. It has been 10 months since the injury. In addition, after each sexxual act, it led to progressive escalations of pain, where at the last time, led to occasional pain that I would rate as near disabling if the area was just aggravated very minorly. With just my experience, doctors should counsel that it would be wise to not have relations. The plaque at the base however, was not aggravated by sexual relations.
I agree that it's good to discuss and have different points of view. Sure, I would use antiinflammatories for pain at first and throughout, but for me, for very short periods of time.
The believe I used grape seed extract alone at first, and noticed a redder, stronger erection. My erections previous to this were not I would rate weak, they were perhaps not extremely hard due to the pain, but they were not atrophied. I had full strong erections without any medication and definitely noticed an angle, perhaps 10 to 20 degrees to the left, and the angle decreased to almost nothing probably I would say very shortly after using the grape seed. I would say using grape seed caused a bit of a stronger erection when used alone and a bit bigger. I could feel the erection pulling on whatever was causing a deviation in angle, and it was an almost pleasant feeling. When I added Vitamin E later, I noticed a gargantuan increase in size, especially in the head. I would probably not want to engage in sexual acts with a larger penis like this because it was probably thinning the tunica. I admit that it is a bit bizzare. However, when I used vitamin E alone I notice a bit of a larger erection. Additionally with arginine at night, the erection seemed larger and more engorged with blood. However, I never noticed a size increase like the grape seed and vitamin E. I used the CVS grape seed plus. I would not use the grape seed if you have experienced inflammation or shortening of any kind recently, because I believe the grape seed inflamed the area somewhat and led to a later shortening when I aggravated it.
Quote from: Hawk on March 13, 2007, 09:48:03 PM
tdsc,
With all due respect, you offered NO evidence for any point except a personal story about your erect penis dramatically increasing in length and girth from a dose of a very common food supplement that makes no suggestion of such an effect. I find this claim fantastically unbelievable. I do not believe any substance on earth can result in this response so I am left bewildered by this claim. Clearly your tunica did not instantly become capable of a greater stretch. Do you mean that your erections had become small and flaccid and this dose returned it to normal ???
The grape seed alone probably led to an erection that was at my natural greatest or perhaps a bit larger. When I added vitamin E, I'm not kidding, it was much bigger. I don't believe that I can be the only one. In fact, when I posted on the duputryn's site about this months ago, somebody else replied and said wow thanks I noticed the same thing.
Tdsk,
Other than this being an impossibility, there are about 4 other reasons this just cannot be. No amount of claiming it so can change that. I have no more explanation for your report than I would if you reported that you could shoot 38 caliber hollow points with your penis and that you have the target from the firing range to prove it. I only know that it could not be an accurate report.
I would have to say that is was a temporary (while on the drug) 50% increase. I would post the reply from another person on a different board who saw dramatic changes, but it can't be found. This is not an anomaly. I wouldn't be posting this if I thought it was a slight increase. The increase was cartoonish (when combined with 400-800 iu of vitamin e, and in fact I wouldn't even use the vitamin e, maybe just a little; when not combined, there was not a dramatic increase but the red blood flow was there) and one you should try for yourself. I would add that I believe from using grape seed alone, that after having a few daily erections, the penis actually had a red look under the skin like there was very good blood flow, and I never experienced this with arginine, any other substance, or even pentox. This is not a joke. You'll have to try it out for yourselves.
Here is a link for pine bark which is similar to grape seed extract and it says it may increase nitric oxide production: http://www.drugdigest.org/DD/DVH/HerbsWho/0,3923,551937%7CPine+Bark+Extract,00.html
I have tried it, I take it daily. However, i don't base my rejection on my case. That would be absurd. I base it on the impossibility of an oral supplement increasing penis size, much less in one dose. Get real! If that happened in 10% of men, the product would sell for thousands of dollars, yet in the case of grape seed extract they somehow fail to even mention it. It would be their gold mine! No, pound for pound much more valuable than gold!
I believe we have both had our say and that any thinking person can now assess these posts and make there own mind up on the issue.
I have to question the point of your posts and if you are just screwing with the forum. In any case. We have both had our say. At the risk of sounding realistic, it is time to leave the "cartoonish" and to get back on topic.
You do realize how ridiculous you're acting? You may have taken the medication and simply not have noticed your erection. How long did you take the drug, and what else were you possibly taking that could have counteracted it? Did you take it with Vitamin E as I stated? It is a lighthearded medication that probably won't do much damage (hopefully none at all if you're careful and have no inflammation), and that was its intent.
Yes Tdsk I do take it with vit E as do many others here that have obviously not experienced your impossible observations. No one supports your claim to a "cartoonishly enlarged penis" with a single dose of supplements; no members, no nutritionists, no doctors, no pharmacists, and no physiologists or biologists.
If you actually read my post you will realize my conclusions were not based on the results with me. They were based on fairly common knowledge and rational thought processes, sorry, nothing "cartoonish" or "lighthearded" to offer. ;)
I spent two months on BOTH grape seed PLUS pine bark PLUS resveratrol PLUS 2200IU of Vitamin E daily. Perhaps I was doing something wrong because none of the effects were "cartoonish". I really don't know where you are coming up with all of this stuff.
- George
We have had at least two people who said they would try taking "cvs grape seed plus" on an empty stomach (two pills). For those of you who are just reading, it does cause a rush of blood to the penis and although does not create an erection sort of helps it along. Also, the erections seemed to be stronger and fuller.
tsdc, grape seed supplements are powerful broad spectrum antioxidants which can indeed be beneficial for people with Peyronies, but I have never heard of them resulting in a 'rush of blood' anywhere in the body. The other ingredients are also antioxidants and I can't see what any of them would have to do with blood flow, but if its working for you, thats great. I would have no problem with recommending this product for Peyronies.
- George
Grape Seed Plus ingredients from the CVS web site:
Per Capsule: Selenium 15 mcg (as Selenium Yeast and Selenium Proteinate); Grape Seed Extract 50 mg (Standardized to Contain 50% Polyphenols, 25 mg); Full Spectrum Antioxidant Blend 130 mg (Green Tea [Camellia Sinensis] [Leaf]; Citrus Bioflavonoids [Citrus Sinensis] [Fruit]; Bilberry [4:1 Extract] [Vaccinium Myrtillus] [Fruit]); Rice Powder; Gelatin; Silica; Vegetable Magnesium Stearate
tdsk,
If you are not making this all up (my assumption, frankly), then it is really really hard to come up with a rational explanation for your report. That alone makes it sound absurd.
I have tried to understand it every way I can - but you are consistently reporting changes that are FAR outside the mainstream for Peyronie's disease sufferers. The color changes, the intense pain that even requires a different pair of pants, the freakish growth of your penis with supplements that many of us have taken (yes, even with similar brands).
I dunno.. maybe when you took that and got an erection, you bled into the subcutaneous space and it swelled up between the tunica and the skin. That might leave you with a bruise that should have slowly evolved into a purple, then yellow/green discoloration though. So it doesn't make ANY sense...
Perhaps the problems that you are having are related to a different lesion or a different anatomy than usual. Could it be that you have a strange collagen vascular disease like Ehlers Danlos? Are you "stretchy" in other places? I just cannot fathom a way that the anatomy can change the way you state.
Saying that vitamin E or grape seed extract changes the structure of collagen is incorrect. It does not. So, that theory of yours is WRONG.
I could go on. It seems that you are quite resistent to hearing alternative views to your own, despite the patently goofy nature of what you are saying. So I will invoke my personal three strikes rule. When I have posted on a subject three times with someone and they still do not either hear what I am saying or respond to it, I stop. Sometimes I even stop at two posts.
Finally, I must get out of this "debate" before we or someone must invoke Godwin's law, which states "As a thread grows longer, the probability of a comparison involving Nazis or Hitler approaches one." The corrollary to that rule is that when such a comparison occurs, the discussion must end.
http://www.encyclopediadramatica.com/index.php/Godwin's_Law
Tim
OK im just taking a long shot here...I was discussing something with a friend recently about diving and teh subject of the hyperbaric chamber came up. Apparenty it can be used in cases where gang green is starting, so it can increase oxygen flow to the tissue. I wont lie, I am young and dont know much about these things but I was thinking could something like that not be beneficial?? You get something called Hyperbaric Oxygen therapy which is used to treat a number of things and one is "wounds that are battling to heal"
Anyway...just a though for discussion I guess. U guys may just dismiss it :)
Ive been on the PAV treatment for about 2months now...no real improvements yet but no negative developement I guess so keepin hope up
Good Luck to all
Either this has never been tested for Peyronies Disease or it was tested once in Russia - I cannot recall right off hand. I think the downside of hyberbaric therapy is possible to outweigh the positives.
I know that Michael Jackson was considered (even more) wacko because he bought a hyperbaric chamber. It turns out he was trying to use it to heal his vitiligo (white patches) on his hand (it didn't work apparently). He went back to the one glove, and then finally decided to go with bleaching all of his skin to make it less obvious. They joke about him going from being a black man to a white woman, but I see him as a person in great pain, who has been acting in odd ways to (inappropriately) deal with it. But I digress...
I know of no data to support use of hyperbaric therapy for Peyronies Disease.
Tim
http://www.urotoday.com/287/conference_reports/aua_highlights__may_22_2006/aua_2006__the_effect_of_hyperbaric_oxygen_therapy_on_erectile_function_recovery_in_the_rat_cavernous_nerve_injury_model.html
to be honest this idea interests me a lot....but i wouldnt know where to start to try get it used + im sure the price of this treatment is quite significant
Quote from: Old Man on April 07, 2007, 10:59:06 AM
IMHO, the chambers might could be used to treat Peyronies Disease if one could find a way to just expose only his mid body to the system, etc.
Old Man
Well, is not a VED a localized form of hypobaric therapy?
Tim
My understanding is that a hyperbaric chamber is that it has a positive pressure and is oxygen saturated. I think it is supposed to allow the blood or the tissue (or both) to carry more oxygen than is possible under normal circumstances. I do not think the ones used for the bends from diving utilized super oxygen rich environments. I think they only used the pressure to prevent gas bubbles from forming in the blood.
I have now dispensed my total knowledge/assumptions about hyperbaric oxygen therapy
Nah.. the VED is HYPObaric, not HYPERbaric. It creates a more negative pressure, whereas the hyperbaric chamber creates a higher pressure. Thus a diver can be "taken back down" to a certain depth, and gradually "brought back up to the surface". OTOH, such a chamber can be used to create lower than normal pressures. Thus, in "Operation Everest II", "climbers" were gradually taken to an altitude the equivalent to the summit of Mt. Everest (where all sorts of invasive procedures were done that could not be done easily on the mountain). Scientists studying them had to wear oxygen masks to go into the chamber to work with them; once one of them had his mask fall off and he promptly passed out from lack of oxygen. OTOH, the climbers who had gone "up" gradually did well without oxygen (and put his mask back on him).
I have been to altitude, but I do not recall any positive "VED-like" actions on my penis or erections! That might be because the vacuum I create with the VED is quite more negative than the lowered pressure at 19,000 feet.
Tim
jusrt thinking about it logically though..for me..who has suffered a thickening and hardening throughout the penis...i can only think that going in as chamber that helps the oxygen and healthy blood flow can be benificial if anything...im very il informed on all these issues but just thinking about it makes loads of sence to me and I do belive is worth following..U know all we need is one urologist who is willing to experiment cause I am sure as hell very ready to experiment
Hello,
Have any of you seen this article from a year and a half ago?
http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2005/04/10/wruss10.xml&sSheet=/news/2005/04/10/ixworld.html
The claim is that if it's successful at high risk that you'll have "7 inches semi-aroused at all times", whatever that would be like.
Robert
I missed that article but did see a picture of the arm before reimplantation. I wondered why they did not use tissue expanders to stretch out the skin on the arm first (which makes it thinner) and have a primary closure instead of needing to graft skin from the leg.
http://www.mosnews.com/news/2005/03/22/miraclesurgery.shtml?3rdarm
It would actually be pretty hard to set up an experiment with this. It would require getting a chamber for regular use - say an hour a day of hyperbaric O2 therapy. It would mean getting waivers of liability and getting it passed by the human subjects review panel. There might not be enough data to suggest that it would help to even justify trying it.
I remember a chiropractor using a large magnet to treat the lung infection for a patient of mine with cystic fibrosis. Although it made some "sense" what amazed me was that he A) just did it, and B) charged her for it!
It didn't help.
Tim
Here is an article from Sweden about Acetyl-L-Carnitine
"...L-carnitine is an amino acid the body uses to turn fat into energy. It is not usually considered a nutrient because the body can manufacture all it needs. Two forms of L-carnitine, acetyl-L-carnitine and propionyl-L-carnitine, have been tried as treatments for Peyronie's disease.
A 3-month, double-blind study compared the effectiveness of acetyl-L-carnitine to the drug tamoxifen in 48 men with Peyronie's disease.1 Acetyl-L-carnitine (at a dose of 1 gram[g] daily) reduced penile curvature while tamoxifen did not; in addition, the supplement reduced pain and slowed disease progression to a greater extent than tamoxifen. ..."
http://www.swedish.org/111803.cfm
Has anyone experienced tunica albuginea grafts? There have been various trials that have reported seemingly mixed results, but I wonder what testimonials would come from those who went through it and whether such a procedure will be made available to the public. Also, what about tunica regeneration, as a part of tissue engineering, or any advances in growing synthetic substances that mimic the tunica to coat the affected area or the entire corporal cavernosa.
Robert
Has anyone tried or seen this 2-AEP? It says it's for what ails you, sort of like snake oil. But I'm wondering if anyone has seen it.
http://www.nutritional1.com/ctrk/land.php?vid=3&pid=26
I thik I'll stick to my Flintstones.
http://www.flintstonesvitamins.com/
Vitamin Role
Vitamin A Helps maintain a healthy immune system.
Vitamin A as beta-carotene Form of vitamin A thought to function as an antioxidant, which may provide protection against cell-damaging free radicals. Beta-carotene is found in dark green and orange vegetables and fruit that often are lacking in children's diets.
Thiamin (B1), Riboflavin (B2), Niacin, Vitamin B6 Pantothenic Acid and Biotin B vitamins help your body turn food into the energy it needs to function optimally. Taking B vitamins is important in helping your child grow up healthy and strong.
Vitamin B12 Essential for normal healthy nerve tissue and healthy red blood cell formation. Especially difficult to get for those who avoid animal products.
Folic Acid Essential for growth through its involvement in DNA production and healthy red blood cell formation.
Vitamin C Antioxidant necessary for healthy gums and to inhibit damage to body cells. Vitamin C also helps suport immunity.
Vitamin E Antioxidant that works to promote heart health and to help protect body cells.
Vitamin D Vitamin D helps promote the absorption of Calcium and Phosphorous and regulates how much calcium remains in your blood.
Minerals Role
Phosphorous Helps generate energy in every cell of your body. It is also a key component of bones and teeth.
Zinc Promotes cell reproduction and tissue growth and repair. Adequate Zinc intake is essential for growth. Zinc helps your body use carbohydrates, proteins, and fats.
Iron Serves as an essential part of hemoglobin, which carries oxygen in your blood from your lungs to every body cell. Iron helps support a healthy immune system.
Calcium Builds strong bones and teeth. Calcium helps your muscles contract and heart beat and plays a role in normal nerve function.
Iodine The chief component of thyroid hormones which regulate body energy metabolism.
Magnesium Necessary for energy metabolism, helps maintain body cells in nerves and muscles, and signals muscles to relax and contract. Magnesium serves as a component of bones.
Copper Helps your body make hemoglobin, needed to carry oxygen in red blood cells. Copper also helps your body produce energy in its cells.
http://www.fsphysiomed.com/peyronies-disease.php
Many of us called the pocket on this one.
Sounds a bit more respectable :D It's like medicine for my physiology.
Liam
I've started to add more to this post several times and have stopped due to excessive laughing. The more I think about this, the funnier it gets, on so many levels.
This link about fibrotic processes may or may not be of interest.
Clinical and Experimental Dermatology
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1365-2230.1994.tb02690.x?prevSearch=allfield%3A%28fibrotic+process%29
What it really to note in this study is the fact that when the causative factor (bacteria) is eliminated, the tissue suddenly heals normally. This is evidence to me that fibrosis is NOT irreversible. Reversal in fact, only requires that the causative factor be removed in order to proceed. In the case of Peyronies, we need to identify those causative factors and remove them. Many of us have been very concerned with TGF-Beta-1, and with good reason. But we have to remember that there may be larger factors behind the generation of the TGF-Beta-1, and if those factors could be addressed the TGF-Beta-1 might well go away on its own. And by this, I am suggesting that a key factor in Peyronies may well be some sort of systemic metabolic imbalance, and that that same imbalance may, in fact, be behind a number of enigmatic diseases generally associated with aging and/or poor health.
VEDs and traction, in theory, stretch and reshape. I thought I would research some of the Peyronies Disease "cousins like Dupuytren's and Adhesive Capsulitis and try to find an analogous treatment. I found this. This is for discussion or FYI. I don't think it is more than what it is.
Idiopathic adhesive capsulitis. A prospective functional outcome study of nonoperative treatment.Griggs SM, Ahn A, Green A.
Shoulder Service, Brown University School of Medicine, Rhode Island Hospital, Providence, USA.
BACKGROUND: Idiopathic adhesive capsulitis is a commonly recognized but poorly understood cause of a painful and stiff shoulder. Although most orthopaedic literature supports treatment with physical therapy and stretching exercises, some studies have demonstrated late pain and functional deficits. The purpose of this study was to evaluate the outcome of patients with idiopathic adhesive capsulitis who were treated with a stretching-exercise program. METHODS: Seventy-five consecutive patients (seventy-seven shoulders) with phase-II idiopathic adhesive capsulitis were treated with use of a specific four-direction shoulder-stretching exercise program and evaluated prospectively. The initial evaluation included the recording of a detailed medical and orthopaedic history and assessment of pain, range of motion, and function. The outcome evaluation included assessment of pain, range of motion, and function; completion of the Disabilities of the Arm, Shoulder, and Hand (DASH) Questionnaire; and completion of the Short Form-36 (SF-36) Health Survey. The mean duration of follow-up was twenty-two months (range, twelve to forty-one months). One patient died prior to the final evaluation, and three patients were lost to follow-up. RESULTS: Sixty-four (90 percent) of the patients reported a satisfactory outcome. Seven (10 percent) were not satisfied with the outcome, and five (7 percent) underwent manipulation and/or arthroscopic capsular release. The outcomes of the patients who did not have manipulation or capsular release were evaluated. There were significant improvements in the scores for pain at rest (from a mean of 1.57 points before treatment to a mean of 1.16 points at the final evaluation; p < 0.001) and pain with activity (from a mean of 4.12 points before treatment to a mean of 1.33 points at the final evaluation; p < 0.0001). On the average, active forward elevation increased 43 degrees, active external rotation increased 25 degrees, passive internal rotation increased eight vertebral levels, and the glenohumeral rotation arc at 90 degrees of abduction increased 72 degrees (p < 0.00001). The number of "yes" responses to the Simple Shoulder Test increased from a mean of 4.1 (of a possible twelve) to a mean of 10.75 (p < 0.00001). Despite the significant improvements and the high rate of patient satisfaction, there were still significant differences in the pain and motion of the affected shoulder when compared with those of the unaffected, contralateral shoulder (p < 0.00001). At the final outcome evaluation, the DASH scores demonstrated limitations when compared with known population norms, whereas the profiles of the SF-36 were comparable with those of age and gender-matched control populations. Prior treatment with physical therapy and a Workers' Compensation claim or pending litigation were the only variables that were associated with the eventual need for manipulation or capsular release. Male gender and diabetes mellitus were associated with worse motion at the final evaluation. Patients with a greater severity of pain with activity at the initial evaluation had significantly lower DASH scores at the final evaluation, and patients with lower initial scores on the Simple Shoulder Test had comparatively lower scores on the Simple Shoulder Test at the outcome evaluation. CONCLUSIONS: The vast majority of patients who have phase-II idiopathic adhesive capsulitis can be successfully treated with a specific four-direction shoulder-stretching exercise program. Although measurable limitations and deficiencies were noted at the outcome evaluation, these appeared to be acceptable to most of the patients and did not affect their general health status. Patients with more severe pain and functional limitations before treatment had relatively worse outcomes. More aggressive treatment such as manipulation or capsular release was rarely necessary, and the efficacy of early use of these treatments should be further studied.
PMID: 11057467 [PubMed - indexed for MEDLINE]
Related LinksInfluence of comorbidity on self-assessment instrument scores of patients with idiopathic adhesive capsulitis. [J Bone Joint Surg Am. 2002] PMID: 12107317 Arthroscopic release for chronic, refractory adhesive capsulitis of the shoulder. [J Bone Joint Surg Am. 1996] PMID: 8986657 An evaluation of the effects of the extent of capsular release and of postoperative therapy on the temporal outcomes of adhesive capsulitis. [Arthroscopy. 2005] PMID: 16171636 Arthroscopic capsular release for the treatment of refractory postoperative or post-fracture shoulder stiffness. [J Bone Joint Surg Am. 2001] PMID: 11701791 Arthroscopic capsular release for stiff shoulders: effect of etiology on outcomes. [Arthroscopy. 2003] PMID: 12522401 See all Related Articles...
Source: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Display&dopt=PubMed_PubMed&from_uid=17356153 #11
Anyone had any experiences with the herbal mixture treatments below ?
Im currently working on the modified Thackers formula with Vitamin E instead of
the ACV. I had pretty good results with the thackers and also the Vitamin E
massage so thought I'd give this a shot.
http://www.planetherbs.com/showcase/docs/PEYRONIEsDISEASE.html
PEYRONIE'S DISEASE
By Michael Tierra OMD, AHG founder
Peyronie's disease is characterized by mild to severe curvature of the penis. It is estimate that approximately 1 to 2 men out of 100 are afflicted with this disease in North America with varying statistics in other regions of the world. The cause is not certain but it is believed to be the result of injury which in turn forms plaque or a hard lump on the penis thus it is also known as "Penile Nodulaton Syndrome." It begins with localized inflammation that can occur on any part of the penis where there is erectile tissue.
Symptoms may develop slowly or appear during the course of a day. In severe cases the hardened plaque can reduce flexibility and result in pain by forcing the penis to bend during an erection. Obviously this also makes sexual intercourse difficult, interfering with a couple's physical and emotional relationship and causing a profound lack of self esteem in the man.
Peyronie's can occur at any age. Hypertension and hypercholesterolemia can lead to a weakening of the vasculature of the penis and as a result susceptibility to injury during intercourse can in turn develop into Peyronie's.
Peyronie's is not dissimilar to Dupuytren's contracture, which is a cord-like thickening across the palm of one or both hands causing the 4th and 5th fingers to contract towards the palm. This is fairly common in Caucasian men over the age of 50; however there is no corollary between individuals with Dupuytren's and Peyronie's.
François de la Peyronie, a French surgeon, first described Peyronie's disease in 1743, though the problem was first described in print as early as 1687. Early medical texts commonly classified it as a form of impotence but in recent years it is commonly referred to as erectile dysfunction (ED). Actually while Peyronie's is associated with ED, currently it is medically regarded as only one aspect of the disease since not all cases of ED are Peyronie's.
Traditional Chinese Medicine (TCM) classifies it under the category of liver qi stagnation. This can in sequence because blood stagnation and finally transform into systemic phlegm stagnation characterized by lumps and nodules. Another category for some manifestations might be damp cold syndrome caused by spleen/kidney deficiency that descends to the penis where phlegm nodules are formed.
Treatments
1. Salvia Disperse Peyronie's Nodule Decoction (Danshen Sanjie Tang) warms the kidneys, disperses cold, tonifies the spleen, transforms damp, moves blood and opens the collaterals: Salvia 12g, scrophularia 12, sinapis 10, dang gui 10, dioscorea 10, luffa fiber 10, citrus seed 10, raw Rehmannia 10, cooked Rehmannia 10, zedoaria 10 cinnamon bark 6, milletia 20, lonicera stem 30.
For advanced age, impotence, premature ejaculation, add dipsacus, loranthus, cornus, cibotium curculigo; for abdominal distention and persistent desire to urinate, add lindera, akebia and succinum; for diarrhea, aversion to cold, swollen tongue with tooth marks, add atractylodes and poria; for obvious swelling and pain in the penis, add corydalis and melia; for stubborn hardening that does not respond to treatment (usually with a purplish tongue), add sparganum, prunella, persica and carthamus.
90 cases reported, 15 cured, 34 markedly improved, 13 improved, 9 without results (for 19 cases no data was obtained), overall effectiveness was assessed at 69% (The Journal of Traditional Chinese Medicine, May, 1985.
2. Formula for removing cold, blood and qi stagnation, and softening hardness.
Zedoary (E-Zhu) – pungent, bitter, warm enters liver and spleen channels, invigorates blood circulation, and removes stasis and pain, 9gm.
Brassica seed (Bai jie zi) – pungent, warm, enters the lung and stomach, resolves phlegm and lumps and circulates qi, 9gms (crushed)
Litchi seed (Li zhi he) -regulates qi, disperses qi and cold stagnation in the liver channel - 15g (crushed)
Vacaria seed (Wang bu liu xing) pungent, sweet, neutral enters liver and stomach, invigorates blood, 9gms (crushed)
Persica seed (Tao ren) – sweet, bitter, neutral, enters, lung, liver and large intestine channels, moves blood, 9 gms
Bombyx (Jiang Can) – pungent, salty, neutral- enters lung and liver channel, subdues internal wind (antispasmodic), relives pain and resolves phlegm and nodulation – 10gms
Spargani (San leng) is pungent, bitter, neutral/cold, enters the liver and spleen, relives blood stagnation, invigorates qi and relieves pain. 9gms
Angelica sinensis tails (Dang gui) is sweet, pungent and warm, enters the liver, heart and spleen channels, moves blood, and relieves pain, 9gms.
Salvia miltiorrhiza (Dang shen) is bitter, slightly cool, enters the heart and liver channels. It invigorates blood, removes stasis and relieves pain.
Sargassum (Hai zao) is bitter, salty and cold, enters the lung, spleen and kidney, it softens lumps and hardenings – 15gms
Pteropus (Wu ling zhi) is salty, bitter and warm, and enters the liver and spleen, it eliminates blood stagnation and relieves pain – 9gms
Cat-tail pollen (Pu huang) is sweet, neutral and enters the heart and liver. It invigorates blood circulation, relieves stasis and pain. – 9gms
Penis soaks
Make a decoction of lobelia, pteropus (Wu ling zhi), myrrh, frankincense, Brassica seed and prickly ash. Simmer one ounce in a pint of water 30 minutes, cool and strain. Wrap a cloth saturated with the tea around the penis twice daily for 30 minutes.
Following this one should directly apply an oil of vitamin E, castor and DMSO twice daily.
Supplements
Take Vitamin E and Nattokinase daily.
Interesting links. Many of the herbs listed do not have any clinical or even anecdotal evidence linking them to improvements in Peyronie's: even if it "makes sense" that they might help, I prefer to see some sort of evidence.
What do you mean by "having pretty good results"? I would love to hear how it is working for you.
Tim
There are just so many promising Chinese herbal compounds out there that I would just love to try. But, for me, the underlying problem with "just trying" various Chinese herbal compounds is epitomized by the dog and cat food fiasco. The horrific problem with Chinese herbal solutions is the impossibility of knowing what kind of possibly deadly contaminates have been introduced, either by accident or otherwise, into the final product. Fortunately, many of the more popular remedies are marketed by mainstream established health food vendors whom one would hope are testing their raw ingredients. But many other second tier supplements are difficult to obtain and are available only through sources that don't lend themselves to a lot of trust. So this has been my dilemma when it comes to making use of semi-exotic Chinese herbals. I'm just to scared of what I stand to possibly lose to take the risk for what I might possibly gain. Otherwise, it IS a rather attractive option.
- George
QuoteTraditional Chinese Medicine (TCM) classifies it under the category of liver qi stagnation. This can in sequence because blood stagnation and finally transform into systemic phlegm stagnation characterized by lumps and nodules. Another category for some manifestations might be damp cold syndrome caused by spleen/kidney deficiency that descends to the penis where phlegm nodules are formed.
Phlegm nodules? ???Quoteswollen tongue with tooth marks
Which came first?Quote90 cases reported, 15 cured, 34 markedly improved, 13 improved, 9 without results (for 19 cases no data was obtained), overall effectiveness was assessed at 69%
Much like the results of PABA.I guess I'm a skeptic. Give me some real scientific data (which seems rare in the Peyronies Disease world).
Liam
This is not any new information. It is a concise list of the major nonsurgical treatments.
1: Eur Urol. 2006 Jun;49(6):987-97. Epub 2006 Mar 20. Links
Comment in:
Eur Urol. 2006 Jun;49(6):946-7.
A critical analysis of nonsurgical treatment of Peyronie's disease.Hauck EW, Diemer T, Schmelz HU, Weidner W.
Department of Urology and Pediatric Urology, University Clinic Giessen and Marburg, Justus Liebig University Giessen, Germany. ekkehard.w.hauck@chiru.med.uni-giessen.de
OBJECTIVE: Because the efficacy of nonsurgical therapy of Peyronie's disease is controversial, this review analyses the current status of conservative therapy of Peyronie's disease. METHOD: A systematic survey on results of studies published as original papers in peer-reviewed journals is provided. RESULTS: Oral drug therapies include potassium para-aminobenzoate (Potaba), vitamin E, colchicine, tamoxifen, propoleum, acetyl-L-carnitine, and propionyl-L-carnitine. Verapamil, interferon-alpha2a and interferon-alpha2b, collagenase, cortisone, hyaluronidase, and superoxide dismutase are considered intralesional therapies that have had various degrees of success. Other treatments include local gels, iontophoresis, extracorporeal shock wave therapy, and radiation. CONCLUSION: This review analyses the current status of the conservative therapy of Peyronie's disease, because the efficacy of the nonsurgical therapy is controversial.
PMID: 16698449 [PubMed - indexed for MEDLINE]
Source: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16698449&query_hl=1&itool=pubmed_DocSum
o/o Its the end of the world as we know it. Its the end of the world as we know it. o/o -REMNot listed are Pentox, L-arginine, and Viagra as well as some other favoritesQuoteCONCLUSION: This review analyses the current status of the conservative therapy of Peyronie's disease, because the efficacy of the nonsurgical therapy is controversial.
::) DOH!
I found this interesting. You judge the relatedness.
http://www.regence.com/trgmedpol/surgery/sur94.html
Here is a little background:
Effects of scar tissue on back pain and leg pain
The formation of scar tissue near the nerve root (also called epidural fibrosis) is a common occurrence after back surgery—so common, in fact, that it often occurs for patients with successful surgical outcomes as well as for patients with continued or recurrent leg pain and back pain. For this reason, the importance of scar tissue (epidural fibrosis) as a potential cause of postoperative pain—commonly called failed back surgery syndrome—is controversial.
Scar tissue formation is part of the normal healing process after a spine surgery. While scar tissue can be a cause of back pain or leg pain, in and of itself the scar tissue is rarely painful since the tissue contains no nerve endings. Rather, the principal mechanism of back pain or leg pain is thought to be the binding of the lumbar nerve root by fibrous adhesions.
Source: http://www.spine-health.com/topics/surg/scar/scar01.html
The Use of Betamethasone and Hyaluronidase Injections in the Treatment of Peyronie's Disease
http://www.ingentaconnect.com/content/tandf/suro/2000/00000034/00000006/art00004?crawler=true
This again raises the question of the simple effect of needling the plaque having a good effect on it - are the drugs infused irrelevant?
Tim
Great point Tim. All of the injections that have "limited" success have the needle going into the plaque in common. The variable may well be the point(s) of insertion. More strategically places punctures may have a more positive outcome (knock me out first please ;)).
We are all familiar (I think) with needle aponeurotomy (NA) used to treat Dupuytren's.
From the article on epidural fibrosis:QuoteFinally, adhesions may be disrupted by manipulating the catheter at the time of the injection.
This should be looked at again.
Well, some of the Peyronie's studies actually used placebo, and they improved but not as much (ie the first verapamil studies). So it may be a bit of both - but without a control group, it is impossible to tell.
Tim
I dug back in the forum and found this. It is now almost 3 years later and I could not Google anything more on this technique. Whats up with that? I'll keep looking.
1: Prog Urol. 2004 Sep;14(4):586-9; discussion 588-9. Links
[Leriche technique for the treatment of La Peyronie's disease][Article in French]
Khouaja K, Delmas V, Boccon-Gibod L.
Clinique Urologique, Hopital Bichat, Paris. karimkhouaja@yahoo.fr
OBJECTIVE: The treatment of La Peyronie's disease comprises medical treatment during the inflammatory acute phase and surgical treatment at the stage of stabilization of the lesions. This technical report describes the Leriche technique for the treatment of the stable phase of La Peyronie's disease. OPERATIVE TECHNIQUE: Patients are operated on an outpatient basis under local anaesthesia, after localization of the plaque by intraoperative ultrasound of the penis with erection induced by physiological saline. A percutaneous tear of the plaque is performed with an 18 gauge needle. MATERIALS AND METHODS: Ten patients with a mean age of 58 years (range: 32-82 years) were operated for La 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 to 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 2 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. CONCLUSION: The Leriche technique for the treatment of La Peyronie's disease is a simple, minimally invasive technique with satisfactory results. It does not compromise a subsequent procedure and does not present any short-term or long-term complications.
PMID: 15776920 [PubMed - indexed for MEDLINE]
Source: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=15776920&dopt=Abstract
Thanks for bringing this up, Liam.
I have been wondering about this as well. As a "newbie", I kind of figured that it was dismissed since I found few references on this site.
Can we have an update from someone out there?
I emailed Dr.Boccon-Gibod ,one of the authors of the paper, about the proceedure. Hopefully I will hear back from him soon. I chose him because I found a 2007 email address (I hope its correct).
We will see.
Liam
BTW, Do you speak French, Voulezvous?
Non.
The extent of my French (?) is:
Laissez Le Bon Temps Rouler!
I am glad you sent that email Liam. This deserves a follow-up. In view of the initial results on the Leriche study and in view of the various injected agents that all show some results, one has to wonder how much of the positive effects of injectable agents is just the needle.
Are the injection stats just a "hit or miss" Leriche technique.
Here is the email I sent:
Dr. Boccon-Gibod,
Thank you for taking time to read this. I will be brief and to the point.
I am looking for information on the Leriche technique for La Peyronie's disease. I have seen and read a translation of the 2004 paper you co-authored. Is this technique still being performed? Are there any new materials regarding this procedure?
As you might have guessed, I have this condition. I also contribute to a Peyronie's Disease forum ( https://www.peyroniesforum.net ). There is significant interest in this technique.
Thank you for your help!
Sincerely,
Liam (Baba) O'Riley
The Leriche technique is a form of NA which has been used for some time on Dupytren's Contracture of the hand.
This article may be of interest:
http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2007/04/29/nlefanu29.xml
Over the past week, I have been experimenting with several topical preparations that include Camphor. I have found the results to be really quite remarkable and I want to pass on my findings. I got started on this track due to a determination to explore the possible effectiveness of various non-steroidal anti-inflammatory agents against Peyronies. Steroidal agents, both oral and topical are so rife with unwanted side effects I avoid them whenever possible. I started out with common TigerBalm. My reasoning was that if Peyronies is indeed fueled by inflammation as Lue and others have asserted, then something like TigerBalm which is commonly used to control inflammation from sports injuries and such should be effective. Added to this is the fact that Camphor is widely acknowledged to be "transdermal".
So I applied TigerBalm to one of the affected areas of my penis. At first it felt soothing. Then it burned like hell fire for over a half an hour. But amazingly, within a few hours, the hardened three year old plaque on the septum of my penis had been reduced in size by close to 50%. So I began applying at 8 hour intervals and gradually expanding use to all of the affected areas of my penis. At first I noticed a lot of 'rebound' effect. The plaques would shrink dramatically and then, by the time of the next treatment, they had gained much of their size back. But the TigerBalm just kept working and gradually the rebound effect diminished. During this time there was no effect on curvature, but there was a dramatic effect on the two plaques, one old hardened one and a newer, but larger, softer one. There was also no observable effect on the "cord" connecting the two plaques.
After a few days, I decided to explore further and changed from TigerBalm to BenGay Ultra which includes an additional ingredient and is formulated as a cream rather than an oily salve. The effect was the same and I appreciated the fact that the BenGay did not leave an oily residue like the TigerBalm. Over the week, things moved along until one night when I experienced a very painful erection and then later noticed with a following erection that one of the cords was completely gone. I also noted that one of the curves was also completely gone. This curve is now rebounding and the cord appears as though it is trying to reform, AND I must quit the Camphor since there are warnings not to use it for more than one week in a stretch since it can cause chronic skin irritation among other possible side effects if you use it over too long a period. Camphor itself is actually slightly toxic (they make insecticides and mothballs out of it) and can actually cause poisoning if you get too much of it.
So at this point, I am planning to take a one month break and observe how the results hold up and then, hopefully, use it for another weeks stretch and hopefully chip away further at the Peyronies. Of all the things I have tried, this has to be the most effective yet and it absolutely makes it clear in my mind that these Peyronies plaques, cords, dents and curves CAN be reversed AND that there indeed is something out there that CAN do it.
If I were starting over, I would use the standard BenGay, not the Ultra, since the Ultra contains Salicylate which is of no benefit in terms of the Peyronies. Actually, on second thought, I wouldn't do that since the standard BenGay contains only Menthol with no Camphor. Most preparations contain some combination of Camphor and Menthol which is what I recommend you try. I am fairly certain that the effective agent is actually the Camphor which was actually used to treat Peyronies at one time, but then discarded as being ineffectual. But it was apparently only tried as an oral treatment and was never really tested topically. Actually, the oral form of Camphor is significantly different from the topical form. The topical form IS TOXIC if ingested. Camphor, interestingly is first and foremost an anti-microbial agent. But it is also classified as an anti-irritant and is reputed to have some anti-inflammatory qualities as well, although the FDA tends to refute that assertion. The FDA also questions its transdermal effectiveness as well. I really don't care about that OR how it works, since it obviously works for me. As the saying goes, each person is an individual and your mileage may vary, but at this point, I felt like the benefit I have obtained has been so dramatic, it is time for me to share it with you. But DO NOT use this stuff more than four times a day (once every six hours) or for more than one week at a time, because it can have serious side effects if you over use it, so PLEASE be patient and don't injure yourself with it! Also, it will burn, that is to be expected, but if you start to notice any other side effect from it, especially allergic reaction or general skin irritation, stop using it right away.
- George
George
Thanks for this interesting trial. I will try it myself and see what happens.
The active ingredients of Tiger Balm are said to be: camphor, menthol, cajuput oil and clove oil.
The active ingredients of BenGay Ultra are said to be: Methyl Salicylate 30%; Menthol 10%; Camphor 4%
They all seem harmless enough - I am sure that we have all used this type of treatment for other things.
Regards,
Percival
Percival, I really like the BenGay base (cream) as opposed to the TigerBalm base (ointment). I noted in my post that I would prefer the standard BenGay without the Salicylate. I am going to have to correct that previous post, because I just discovered that the standard BenGay DOES NOT CONTAIN CAMPHOR. Instead it contains only Menthol as an active ingredient and I don't think that Menthol will work for Peyronies. But there must be some cream base formula that has the Menthol/Camphor combination like the TigerBalm, perhaps even another TigerBalm product, like TigerBalm Arthritis Rub (TigerBalm products also contain Cajuput Oil, another tree derived agent with Camphor type qualities). Another interesting product would be Vicks VapoRub Cream. There are also interesting products out there containing camphor plus MSM and sulfur. In any case I wish you the best! It really worked for me. -George
Well, lo and behold! I go out on the internet to start looking over various Camphor products and what do I find? Camphor products marketed as scar tissue removing agents! There are actually already companies out there claiming that Camphor is capable of dissolving scar tissue. What an interesting connection! - George
http://www.herbsmd.com/shop/productdetail.asp?pid=8379 (http://www.herbsmd.com/shop/productdetail.asp?pid=8379)
George,
Bengay has a non-greasy Vanishing Scent gel that is said to be non-greasy. The active ingredient is 2.5 % Menthol. Camphor is one of the INACTIVE ingredients. The others are carbomer 940, diazlidinyl urea, isopropyl alcohol, nonoxyno-9, potassium hydroxide, and purified water.
Does this sound like something I should use or are there way too many ingredients.
In the previous post I said camphor was one of the active ingredients.
OK Fellas,
Here is a link I found on scars. It gets better toward the end with a formula for reducing scars. Read up.
http://www.edgarcayce.org/health/database/health_resources/scars-Adhesions.asp
Here is a link for some information from a search on methyl salicylate + scars titled :
Topical penetration of commercial salicylate esters and salts using human isolated skin and clinical microdialysis studies
http://www.blackwell-synergy.com/doi/abs/10.1046/j.1365-2125.1998.00045.x?prevSearch=allfield%3A%28Methyl+Salicylate+%2B+scar%29
Here are the ingredients from the pfiser site on Ben Gay (http://www.pfizerch.com/product.aspx?id=263)
Ultra strength Ben Gay =
Active Ingredients Purpose
Camphor 4% Topical analgesic
Menthol 10% Topical analgesic
Methyl Salicylate 30% Topical analgesic
George
I could only find Tiger Balm here. There are two versions - red or white. They seem similar so I chose the red version and have tried it today. The initial effect is as you describe - slight burning sensation but not too bad. After about 4 hours I checked to see what might be happening - it had made the veins very prominent so that my unit looked like a road map of Italy!
I have given it a second treatment and will persevere for a week if possible to see what happens.
One piece of advice if any one else is going to try it: don't get it on your nuts.
Regards
Percival
bodoo2u, I sounds like the Bengay product you mentioned would be effective. Camphor and Menthol are the only active ingredients. The others on the list merely form the base. As I mentioned, I personally prefer the non-greasy base. But another issue in terms of inactive ingredients in the base revolves around Alcohol. Alcohol can irritate the skin and also dry the skin excessively if you are predisposed to that. So it is important to remember that if you get a reaction. It may not be the Camphor, but rather the Alcohol that could be causing a problem.
As for the Cayce referrence, I saw that in passing. I did find it interesting, but I must say, I prefer to look to science for the answers to scientific questions rather than to witchcraft. People like Cayce have indeed come up with some pretty profound revelations, but I would have to warn you to be very careful, because their stuff is laced with a lot of really off the wall stuff as well that is very destructive. I would NEVER look to them for guidance, but it is interesting that Cayce did point out some beneficial qualities of Camphor. There are, in fact, products like one I linked below (ScarGo), that contain Camphor in a Cayce inspired olive oil base. Someone might want to give something like that a try to see how it works out. While it would be oily of course, it would also be less harsh than the Bengay approach. As I also mentioned below, Cajuput, contained in the TigerBalm products is another interesting substance that might actually have some therapeutic effect on scarring such as occurs with Peyronies. There are also Camphor products with an Aloe Vera base out there for those bent on experimenting a bit. In any case, there is no doubt in my mind at this point that Camphor holds significant promise in terms of its potential for reversing Peyronies.
Iceblue, thanks for the interesting link on the Salicylate. Personally, I did not notice any increase in the effectiveness with the addition of the Methyl Salicylate, but it is indeed interesting that there is a study out there that indicates it is absorbed into the tissues. Perhaps, with enough time, it would have a positive effect. -George
Back in the "old days" here in the Deep South, all parents kept a product on hand called Campho-Phenique. I dug out a bottle, and the ingredients are Camphor 10.8% (w/w), Phenol 4.7% (w/w) in an Aromatic Light Mineral Oil. We used this for EVERYTHING, from cuts and scrapes to insect bites. It's still around, made by Winthrop Consumer Products, Division of Sterling Drug Inc. I don't know what the designation "w/w" means; does anyone have any idea? Directions say to apply 3 to 4 times daily. For external use. Think it might work?
Scott
%w/w is percentage by weight of a substance.
Phenol is a well-known old-fashioned antiseptic. It has acidic properties and I would not think it wise to apply this to one's unit.
Percival
From Wikipedia:
Quote
In larger quantities, it is poisonous when ingested and can cause seizures, confusion, irritability, and neuromuscular hyperactivity. In 1980, the United States Food and Drug Administration set a limit of 11% allowable camphor in consumer products and totally banned products labeled as camphorated oil, camphor oil, camphor liniment, and camphorated liniment (but "white camphor essential oil" contains no significant amount of camphor). Since alternative treatments exist, medicinal use of camphor is discouraged by the FDA, except for skin-related uses, such as medicated powders, which contain only small amounts of camphor.
And
QuoteExposure of the skin to concentrated phenol solutions causes chemical burns which may be severe;
Scott - Note that Campho-Phenique pushes right up against this 11% limit on camphor and for some reason the FDA has banned "camphorated oil". The Campho-Phenique that is around to day may have been reformulated. I agree with Percival. I would use caution. I think the products on the market today are probably a safer option as they have been subjected both to more regulatory scrutiny and to more research. As for Phenol, even in diluted form it is a skin irritant and there is no way it is going to be effective against Peyronies. You would just be risking an unnecessary burn to your penis and camphor itself causes enough burning (although in the case of camphor, unlike with phenol, it is just a burning sensation that goes away). Just my opinion. - George
Scott,
I used Campho-Phenique all the time as you described. I probably still have some. It was the best for cold sores and bug bites. It didn't take much.
It is very aromatic. I don't think anyone having smelled it would ever ingest it (other than maybe a small tranfer from a cold sore, though. On second thought............ I'll just say Scott and I would never ingest it ;).
Here's a link: http://www.bayercare.com/htm/camphofaq.htm
Liam
One more warning deserves mention to those using camphor.
It is probably a good idea to wash this stuff off before intercourse! :o
I am assuming you only have intercourse with women you like. ;)
Quote from: George999 on May 20, 2007, 04:10:49 PM
As for the Cayce referrence, I saw that in passing. I did find it interesting, but I must say, I prefer to look to science for the answers to scientific questions rather than to witchcraft. People like Cayce have indeed come up with some pretty profound revelations, but I would have to warn you to be very careful, because their stuff is laced with a lot of really off the wall stuff as well that is very destructive. I would NEVER look to them for guidance, but it is interesting that Cayce did point out some beneficial qualities of Camphor. There are, in fact, products like one I linked below (ScarGo), that contain Camphor in a Cayce inspired olive oil base. Someone might want to give something like that a try to see how it works out. While it would be oily of course, it would also be less harsh than the Bengay approach.
Believe me George, I would never try anything like this. I just thougth it was interesting that Cayce talked about the idea so long ago. I should have mentioned that I was including the link only for reference purposes.
Guys,
I went to the store and noticed that Tiger Balm contains the maximum-allowable amount of 11% camphor while Ultra Ben-Gay is 4% camphor. I bought the Ben-Gay, however, because George said it worked so well for him. I'm getting ready to put it on. Wish me luck. I'll remain online so you all can hear me scream. ;D
Its always suggested for use on scar tissue. Any thoughts?
Liam, I have used Vitamin E oil and it seemed to be somewhat helpful, but nothing like the Camphor. The Camphor has had an effect that has really gotten my attention. It has really confirmed to me that these Peyronies plaques do not 'stabilize', but, in fact, remain dynamic. They just seem to stabilize as they mature and tend to remain the same size. But with the right external forces applied, they definitely react, and that is what I was looking for, something that would make them respond really observably. One thing I did notice was that the hardened plaque actually responded faster and more effectively to the Camphor than the softer one.
I think it would also be beneficial to distinguish to some degree between 'plaques' which are obvious nodules and 'compromised tissue' which, while it may not comprise a palpable plaque, is also scar tissue. In other words, even when the plaque itself is 'gone', the tissue that remains may still be unable to stretch normally and may in fact still be scar tissue. I think that Hawk has actually touched on this before and I think that he is right about it. The plaques can completely disappear and the bends and deformities can still be just as bad. So just getting rid of the plaques is not the be all and end all. HOWEVER, the plaque formation is part of the same physiological process as what causes the tissue degeneration. So IF we can identify a way to get rid of the plaques, that same process holds promise in terms of getting rid of the deformities as well, but it may take longer for that to happen.
I just started on this path a little over a week ago and so I am still learning. I really like the Bengay only because of the non-greasy base. It also has the salicylate which has shown little effect over the effect of the TigerBalm, but since it is an anti-inflammatory compound and apparently is transdermal also according to the research, perhaps it does have some potential long term benefit as well. I have also discovered that the TigerBalm I was using prior to the Bengay was actually the TigerBalm Ultra rather than the standard. So if the TigerBalm I was using was 11% and I am getting the same apparent benefit from 4% Bengay, perhaps the Salicylate is making up some of the difference. At first, I was concerned about the seven day limit, but since there are seemingly other formulations out there that don't specify a seven day limit, I am at this point continuing the Bengay with a once a day application. I am just trying to be careful to watch out for any potential side effects. I really want to see what the long term potential of this is. So far the only significant problem I have had is my wife's complaint that I am "stinking up the house".
It would also really be interesting to see what the effects of the Camphor would be in combination with other potentially active ingredients like Vitamin E and Aloe Vera, etc. or even one of the scar removal formulas like ScarGo. There are just so many things to explore with this.
I guess we also need to follow Hawk's lead as well and create some kind of rule book for its usage. Like for example, after using Camphor, always remember to wash your hands before you pick your nose, rub your eyes or stick your finger in any other less obvious body cavity. I have to agree with Hawk, this stuff is like hot chile, I can think of all kinds of calamities that could occur if one is not careful with it. - George
Avoid this at all costs. If you use this, plaque might be the least of you worries. :'(
Indeed! Actually, I looked into Capsaicin, since it is marketed for similar afflictions right next to the Camphor and Salicylate products. But, the pharmacology of Capsaicin is really in a separate niche.
Wikipedia:
QuoteWith chronic exposure to capsaicin, neurons are depleted of neurotransmitters and it leads to reduction in sensation of pain and blockade of neurogenic inflammation.
So Capsaicin really deals with the pain side of inflammation which is really not what we are needing to achieve, since pain is not even an issue for most Peyronie's sufferers. Rather we need to deal with the physiological side of the problem involving accumulation of collagen and scarcity of normal levels of elastin in the tissue.
But you are right. It would be just like one of us to give it a try. I can't even imagine! :o
I used it on my back for pain. I think it also, initially, works on the pain gate theory. Capsaicin is the chemical that makes hot peppers hot. It did a satisfactory job on my back and burned good. However, my wife's hands had a strong reaction to it. We were scrambling for an antedote. We were staying in a hotel and I found some peanut butter which worked. For a couple of days her hands looked like they had been scalded , however.
Thats the reason for my warning. OUCH!
For sure it would fry those plaques (along with everything else). It would be really ugly. I hate to even imagine.
I tried using the TigerBalm last week after discussing it with George. Initially, I forgot that it took a minute for the burn to hit me, so I kept adding tiny little dabs to get it worked in well. Then the burn hit me like a wave and I finally decided it was too much and washed most of it off with soap and water and then I soaked in a tub - all better. I reapplied it - this time using a little amount and only over the left hand base and not nearer to the glans (which was much more sensitive to the burning sensation).
The second application burned also, but was manageable. However, when I washed up at the end of the night, my skin was red and a tiny bit thickened or indurated looking. So, I left it alone and used some Emu oil to soothe things (mine is pure and has no menthol or camphor added to it like some Emu oil).
For the next three days, I stayed with a mildly itchy and inflammed looking skin - tolerable, but not ready for another application.
The kicker came when I got back from my trip and used the VED - the area that had been affected immediately formed a confluent area of petechiae (technically, it was "purpura" I guess). I noticed it through the cylinder (I was using the narrower 1.5 inch cylinder) and stopped.
So, it appears that for me the tigerbalm caused some increased leakiness to the small vessels or capillaries in the skin - probably as a result of the irritation it induced. Caution is quite indicated, and my experience is exactly why when we try something for the first time we should do it in moderation and then wait a good long time before deciding it is safe.
Tim
Tim,
I can only imagine what your burn felt like. I was in the drug store and noticed the Tiger Balm has 11% camphor vs. 4% for Ultra Ben-Gay. That must have burned like you-know-where. The Ben-Gay had me gasping the first time. I hope you're allright.
Thanks Tim for the note of caution. Sorry to hear that this worked out badly for you, I was really hoping it would be helpful. For everyone else: As I noted in my initial post on Camphor, any sort of skin irritation that endures beyond the burning stage would be an indication NOT to continue its use. It also pays to try just a little bit first and then gradually work up. Also take note of Tim's use of Emu Oil. I think this is a great product with lots of potential, especially for those using the VED. - George
Tim, I don't remember, are you taking Pentox?
I have a Question on the VED dose it help to reduce the Curve?
I was going to have a pump implant and had to put it on hold because my back fusion didn't take so I'm going to have that redone on June 5th after i recover from that i am on having the implant but it a ved helps with erection and reduce the curve. I would like to try it. Also were do you get one? can a uro perscribe it and dose most insurance cover theres? Thanks
jtl4661
I am not clear if you are trying to find out if you have an alternative to an implant or exactly what you are looking for.
A couple of basic answers. Since Peyronie's Disease is typified by a curve (although pain and ED are also common themes that we deal with), indeed it is true that we use the VED to help the curve. So that one is easy.
If you also have ED (the only reason to get an implant is intractable and otherwise untreatable erectile dysfunction), then the VED can completely treat erectile dysfunction also.
It is possible that for men who have complete erectile dysfunction and a curvature, that they can fix both surgically. However, be sure that the surgeon is good and experienced with the combination of resecting scar and plaque and with sewing in something as a graft, and then implanting the erectile chambers for the pump. Very few urologists are experienced with simultaneously fixing curvature and putting in a pump/implant.
jtl4661 - I have added bold font to the ideas that I want you to consider before getting operated on. Good luck.
Tim
One last post on Camphor. At this point I am also ceasing the use of the Camphor. I am starting to get skin irritation from it, and although its effect on the plaques has been somewhat spectacular, it has not been effective against the advance of the compromised tissue (non-palpable slightly thickened tunica tissue). In fact, it may even have caused that aspect to be more aggressive. So my apologies to all for being so quick to share this. I have learned much from it, including that the plaques themselves are reversible and that the compromised tissue does not seem to always respond to the same treatments as the plaques. This is even given me doubts about Vitamin E and other approaches, since many of them seem to be based solely on their perceived efficacy against the plaques. It also concerns me that most uros diagnose only by the presence or absence of palpable plaques, which tells me that many potential cases of Peyronies are actually failing to be diagnosed properly in the first place. It also very much confirms many of the assertions that Hawk has been making for some time in regard to Peyronies in the sense of distinguishing that there are two very different types of scar tissue involved in Peyronies, the plaque, and the compromised tissue that has, in effect, lost its elasticity, but is otherwise normal.
George,
Man that is some scary stuff you're talking. I have only been using Ben-Gay for three days but I could swear that the cord became thicker. I shrugged it off because I thought I was just imagining things. Whew! I hope I haven't set myself back.
I think I'm going to wait for the A---- stuff that's being tested by the small pharmaceutical company. I'm downright afraid to try anything else.
BD2,
I seriously doubt BenGay for 3 days can cause any damage other than some possible skin irritation. Having said that, I still have hope for the collagenase from Auxilium.
George and other adventurous men,
I've been thinking about Adolf's Meat Tenderizer (seriously, no pun intended). It works for jellyfish stings. I'M NOT KIDDING! :P I know it sounds funny. ;D Any thoughts before I give it a go (I do plan to research first. I believe it is an enzyme from the papaya).
Liam
I have ED and a 90 degree curve. The uro says to do an implant to fix both I was willing to I just found out I have to go in for back surgery again as my fusion didn't take i never had Peyronies Disease or ED until i had a catherder inserted for my 1st operation shortly after that i developed Peyronies Disease 90 degree curve. I believe the trauma was from a Foley catheter. Yet it is hard to prove thats what caused it. I have been looking for studies to see if it can cause Peyronies Disease When i was Catheter it was so painful I made them remove it then when it was removed a small Guss of blood came out 10 to 12 weeks later i got the pain from an erection for about 12 weeks or so then the pain left. and instantaneously I was left with a 90 degree curve haven't been able to have sex since. I think I was traumatize by the hospital staff I wish there was a study on the case of this by catheration. Like i was saying i don't want to have the pump installed yet as this back has to be redone and heal as I have to be cauterized again on June 5th for my refusing surgery and don't want to have anymore problem's. so i guess what i was asking is the ved will work for me maby? and were do i get one?
thanks for any input on the ved and cause of Peyronies Disease and ED
Jtl4661
Peyronies is something you have. It is not caused by a trauma.
You can have asthma. Something like running or eating may make you have an asthma attack. But, it didn't cause the asthma.
If a person had high blood pressure and didn't know it and was out on a hot day playing golf, he may have a stroke. The heat and stress may have triggered the stroke THAT DAY. It didn't cause the stroke.
The catheter may have "started the ball rolling", but the "ball" was already there. If catheters caused Peyronie's, many more men would have it.
The VED MAY work. One other thought. Pain can cause ED. Stress can cause ED. Peyronies Disease can cause ED. You seem to have a triple whammy. I think it is very reasonable to hold off with the impant until after you've had time to heal from the back surgery. In the meantime, try the VED. Its like chicken soup, couldn't hurt. :)
Note: Ok, I can poke holes in my analogies so I know y'all can. Hopefully they are sufficiently illustrative for my purpose.
In regards to trauma and Peyronies, I have been told by doctors that they have treated men with fairly severe damage to their penises which went on to heal quite normally with no Peyronies resulting from the injury. Liam is correct, trauma itself is not sufficient to cause Peyronies. Peyronies results from a failure of the normal process of healing. And in fact, there are some cases where Peyronies itself simply goes away without treatment. What is really not clear is whatever the background factor is that is preventing Peyronies from resolving itself. That is the big unknown at this point. And, as Liam noted, the use of catheters is quite routine. I had a catheterization years ago and no Peyronies resulted from that. But it is entirely possible that the procedure triggered the Peyronies that was already staged to happen. And if you had not had the catheterization, something else fairly minor could have triggered the same process later on. In my case, I initially had Peyronies affecting both of my corpus cavernosa. One healed to the point that it is now completely normal, the other didn't. Go figure. We just don't know a whole lot of answers in regards to this affliction yet.
Thanks for your input I Guess I just want to blame someone or something. The past 2 years have been hell with the Peyronies Disease developing and the back surgery seems like i hit 45 and going down hill from there. You say the VED might help were do i get one? do you suggest a certain Type?
Thanks Again
JTL4661
Hi jtl4661
You are asking some pretty fundamental stuff and I think it would do you a world of good to do some "catching up" on the boards. Because there are so many posts, some of them have been synthesized in the
"Beginner's Board" ( https://www.peyroniesforum.net/index.php/board,18.0.html )
You really ought to go and read there. Every question that you are asking has been answered already there - it will save some confusion for you and time for you and us alike.
Tium
This site lists some of the uses of Papain (along with chymopapain)
Medically Valid Uses:
Papain is used commercially as a meat tenderizer and is available in grocery stores.
Papain is also available as a digestive aid. It may be found in combination with other enzymes such as hemicellulase, which helps break down cellulose from plants and prevent excessive gassiness.
Papain will digest non-living protein materials (fibrin, dead white blood cells, serum) but will not damage living tissue. This makes it excellent for debriding wounds. Papain is therefore available in topical ointments (Rx only) that are used to remove dead tissue and fibrin from skin lesions. Topical papain preparations are used for bed sores (decubitus ulcers), burns, diabetic ulcers on the feet and legs, and varicose ulcers.
Papain, usually in the form of meat tenderizer, can be used to treat jellyfish stings and some insect stings such as bee stings. The proteolytic action of papain quickly digests the venom responsible for the stinging, pain and inflammation. To be most effective, the papain must be applied immediately. Lifeguards on ocean beaches often keep a bottle of meat tenderizer handy just for jellyfish stings.
Recently, papain has been added in low concentration to contact-lens cleaning solutions. It removes the proteinaceous film that clings to the contacts and extends their wearing time.
Source: https://www.stjohn.org/HealthInfoLib/swArticle.aspx?19,Papaya
It is also an ingredient in Rembrandt toothpaste. ( http://www.dentalarticles.com/reader/otc5.htm )
Chymopapain injection is used to "dissolve" herniated discs. ( http://www.medicinenet.com/chymopapain-injection/article.htm )
There is not sufficient information here to smear Adolf's on your penis. However, it has piqued my curiosity.
I only printed the superficial information. There is much more out there. I am still trying to digest it all. :::BURP:::
Those meat hammers with the pointy surface also work very well.......for meat tenderizing that is, not for Peyronies Disease. ;D
Call it "Extreme Massage" :o It would be Pa Pa Pa Painful!
I also keep one handy for my computer!
I can't help but notice similarities with collegenase (papain not the hammer) :)
Did anyone other than George and I try camphor for any length of time? I was more encouraged by George's experience of straightening than I was about the further hardening of his scar tissue. I have yet experience any straightening, but I'm going to keep trying for a while.
George, what happened to your straightened curve after you stopped using the Ben-Gay. Did it return to its previous angle, did it stay where it was, or did it become worse?
to anyone suffering skin irritation i recommend using pure olive-oil. I don´t have scientific links at hand, but it´s said to literally "completely renew skin within 2 yrs", and being 100% natural it could be a good alternative to complicated creams with dozens of ingredients
Quote from: meanmrmustard on May 27, 2007, 01:03:28 PM
it´s said to literally "completely renew skin within 2 yrs",
I am sure olive oil is fine but the I consider the renewing claim as bogus. The skin completely and literally renews without anything. Skin cells, like hair, like bone, and all other organs, constantly slough off old cells and replace them with new cells. Our very skeletons are replaced several times in a normal life span. Osteoporosis is the result of a flaw in this system where the cells are sloughed off faster than they are replaced. This being said, any item can carry the claim that with use, we will be totally renewed.
Maybe a good ad campaign would be:
"Drink Budweiser and you will have a totally new ears in just 3 years."
It even has a rhythm to it.
Just for the record, at this point, if anything, my Peyronies symptoms are better than before using the TigerBalm/BenGay. The curve MAY be less, one plaque may be reduced (the softer one, and the other plaque is very much improved (the harder one). The "cord" which is actually the defining boundary between normal tunica tissue and not so normal, seems less pronounced. I was concerned that the abnormal tissue was 'advancing', but that may have just been perception. So much hinges on perception, and perceptions can be very deceiving with this condition. I may actually give this another go at some point. But I am continuing to 'do' a lot of other stuff at the same time. I am really trying to target inflammation. One thing I am trying to do is lower insulin levels (elevated insulin levels are inflammatory) by avoiding high glycemic foods and using cinnamon and grapefruit with low glycemic foods. I am also targeting cortisol (elevated levels of cortasol can have an inflammatory effect in a similar way to insulin ie they cause the respective receptors to develop resistance). I am achieving this by using a CNS suppressant and also a concoction to manipulate the receptors themselves (like cinnamon and grapefruit do with insulin receptors). So my approach remains 'wholistic' rather than 'magic bullet' based. By at this point I am actually somewhat pleased by what was seemingly left in the aftermath of the TigerBalm/BenGay.
George
It could be that there was a combination effect between Tiger Balm and the other supplements you take - it may have tipped the scales a bit in your case.
I am now trying a methyl salicylate product to see what happens. The odour is a drawback - as powerful as the camphor product. I don't expect a miracle, but who knows?
Regards,
Percival
Percival, I know that Tim has tried Aspercreme and that didn't seem to work for him. But, who knows? As for the Camphor stuff, the only really dramatic effect it seemed to have for me was on the hardened plaque. For some reason it really seemed to reduce that dramatically. But the more we can document the things we try on this forum, the more information we will accumulate for others to mine out later and hopefully find useful. So keep us informed on how things go with the methyl salicylate. -George
I just askes a few simple questions!
the time and space you wasted wighting all that info down it would have been easier just to simply answer the question rather then insulting. I guess
I'll just give up on this site as not one of my simplest yes or no questions never get answered I am tired of this beating around the bush stuff see ya all later. I wont bother posting anymore as I seem to be a wast of everyones Time here even my time is being wasted. I look for a helpful site see you all later and goodluck all
jtl:
"I just askes a few simple questions! The time and space you wasted wighting all that info down it would have been easier just to simply answer the question rather then insulting."
Dear JTL, I am a fan of accepting life on life's terms. Perhaps you are refering to me as "insulting" when I wrote: "You are asking some pretty fundamental stuff and I think it would do you a world of good to do some "catching up" on the boards. Because there are so many posts, some of them have been synthesized in the
"Beginner's Board" ( https://www.peyroniesforum.net/index.php/board,18.0.html )
You really ought to go and read there. Every question that you are asking has been answered already there - it will save some confusion for you and time for you and us alike."
I could argue that instead of writing what you did, you might actually try reading the material that people have posted here. I was not "being insulting" when I posted what I posted. Rather, I am simply alerting you that many men here will not bother to respond to questions that suggest that the author of the questions has not read previous posts.
For instance, you asked: "You say the VED might help were do i get one? do you suggest a certain Type?"
The "where do I get one" answer has been posted here so many times - as recently as last month, that it is - to me - proof that you are not reading old posts if you have not noticed that.
Rather than retype out links to vendors of VEDs, or to discuss with you the pros and cons, I did give you information - I provided you with a link to read the answers for yourself.
You feel upset that you request was answered in a way that you did not expect. I do not feel it is my duty to "answer your questions" when the answers are already written out in detail on the beginners boards. I provided a link for you, even though the beginners boards are clearly marked as worth reading on arrival.
If you want a "helpful site" - you have one right here. However, this site tends to help those who are willing to help themselves. I hope you stick around to find this out for yourself.
Tim
There is so much information here. The best tool is the search function. I read previous posts for about a month before I ever posted (that was many posts ago). The answers (there are many) are 10 seconds away. You will learn far more than any one member will ever tell you in a single reply. :)
This is the reason we have limited topics. It is easier to find what you are looking for.
Also, realize its hard to tell "tone of voice" in a written post. Sometimes we are direct when making a point due to limited space and time. If you think you've been slighted, put it aside. There are too many benefits from this forum to let hurt feelings get in the way. Buck up!
Liam
JTL,
I too must chime in. I think in 2 years 1000 members and 9000 posts, you are the first person to even imply that you found this forum to be unhelpful. We get up to ten new members in a day. What would make this forum much LESS helpful is if each new member asked the same questions and we retyped the same answers. No person really interested in helping themselves and researching their Peyronies Disease would want to wade through the same repetitive dialog day after day.
That is why those that you criticize have worked thousands of hours without pay to have a "Newly diagnosed board", have organized this forum into topics, and taken care of all the other tasks that make the Peyronies Disease Society forum and website possible.
Added to our effort, you must take some responsibility to use the tools we have provided and not wear your feelings on your sleeve. If you need clarification on any posts or have a slight twist to a question, or need some individual input, just ask. Answering questions we have already provided easily accessible answers to over 100 times, just serves no purpose for you or the forum. If you ask one those questions, you will be directed to the where those answers can be found. Thats how it works.
I hope this helps.
Good luck
It has come up a time or two on this forum as well as on the old BTC. I know of no studies and no real anecdotal reports either good or bad. The posts I have read have been limited to conjecture that : Ice helps inflammation, so ice will probably help Peyronies Disease. I actually used hot and cold for a very short time but since there is little other than conjecture, here is my conjecture:
Ice reduces blood flow. Blood flow seems to be the main objective of every other treatment. Ice is bad.
I've found a few mentions of cryotherapy (not quite the same as an ice pack, I know) in relation to frozen shoulder and Dupuytren's. Nothing has led me to anything profound. :(
My thought, which is nothing more than that, is the cold may cause a reduction in the integrity of the extracellular matrix of the fibrotic tissue. If cold treatment is followed by VED or traction, reshaping may be facilitated. My concern is damage to surrounding tissue. :o
I will continue to investigate and ask questions. 8) <--- This is me with my FBI shades for investigating.
I still think chymopapain should be researched, for Peyronies Disease as well as other fibrotic conditions, by someone in the medical community. :-\
BTW, No reply from our French doctor about the Leriche procedure. >:(
Mr. Liam Emoticon ;D
Thanks for your follow up on the Leriche procedure (& for your effort). Is there any other means of "tracking down" this? I can't believe that we have no way of obtaining verifiable information.
The docs name I was given is Vincent Delmas. If someone would like to try to email him in French, I will pm his email address to you. You can find it on the web. I promised not to publish it, though.
Obviously anyone can contact this doctor but I think it would be good if a well thought out letter such as the one Liam sent, was sent in French. I would think we would have more chance of getting a response as an organization representing many, than many individuals trying to solicit information individually. Liam's letter could easily be translated and resent.
Any French translators?
Quote from: Hawk on May 31, 2007, 10:30:59 PM
Any French translators?
I know a guy who speaks french, I've asked him if he would translate an email into French for me. I'm waiting to hear back from him. So if someone wants to draft up the letter/email in the meantime that'd be great.
I sent you a PM.
MERCI BEAUCOUP
Thanks Jon!!!!
This went out just minutes ago:
Merci beaucoup pour votre temps. Dr. Boccon Gibod référé moi à tu. Je
être vite et direct.
Je suis regard pour l'information sur Leriche technique pour La
Peyronie la maladie. J'ai vu et ai lu une traduction du un 2004
papier explication Du la technique. Est là plus matériaux concernant ce procédé?
En tant que toi pourrait avoir deviné, Je avoir cette maladie. Je
moderate un Peyronie la maladie web forum à
https://www.peyroniesforum.net. Il y a significatif intérêt cette
technique. Mais, tous nous avoir est le une papier de 2004. Quand
Dr. Boccon Gibod a donné moi votre nom, et le dit moi tu régulièrement
il execute ceci procédé J'étais enthousiasmé!
Là être beaucoup Européen membres de le forum aussi bein que le'homme
ici dans le United States voudrais très heureux à mouche à La France
pour aide avec ceci les condition. Nous avoir approximativement 1000
membres et être les la plupart active sur internet. Le forum les la
plupart 1000,000 unique coups.
Quelque chose vous envoyer sera apprécié!
Je pas non éditer qui éditer n'importe quoi en entrent en contact
l'information sans votre permission ET faire ainsi. Cependant, plait
savoir ce là sont beacoup le'homme désespéré pour cette information.
Merci beaucoup pour votre aide!
Salute,
Very well put Liam ;)
This is another example of what we can get done when the need arises. Jon took the email and had it translated in an hour or two. WOW!!!
Teamwork!
Y E S!!!!!
I just noted this in the news. I don't think it would apply to any of us around here, but since I introduced the use of Bengay to this forum, I feel a duty to post this:
http://www.sfgate.com/cgi-bin/article.cgi?f=/n/a/2007/06/09/national/a052733D38.DTL (http://www.sfgate.com/cgi-bin/article.cgi?f=/n/a/2007/06/09/national/a052733D38.DTL)
- George
George
Thanks for the warning. I tried a small amount of cream based on methyl salicylate. It stung so badly I have not continued with it! No chance of an overdose therefore.
Percival
All:
I've had Peyronies Disease for almost 3 yr and tried most everything, and been to specialists. My curve has stabilized and I have two plaques close to the surface. Most recently I've tried very small amounts of Aspercreme directly on the skin above the plaque. Just a dab, not bigger than a pencil eraser. Seems to help a little bit. I've noticed the plaques seem a bit smaller. Can't be sure. I don't think the amount I'm using can hurt, and maybe help. I've read some reports that the substance does penetrate. Anybody else have any experience with this?
I am only half joking when I say, "Head On...Apply directly to the foreskin." ;)
You know, the Ben Gay seemed to work for George. Now Aspercreme has a good report. Who knows?
Liam
I've wondered if anyone had tried aspercreme, it makes some sense. I was in the drugstore this past weekend looking for a moisturizer to use on my penis between stretching seasons and I saw a product called ScarZone to diminish scars on the skin. Since it had moisturizers and an SP15 sunscreen ;), I decided to buy it. Will it penetrate enough to have an effect on the plaque, probably not. But since I am using a moisturizer anyway....
C
Certainly, it would seem these things would be helpful. But I have heard from at least one person who has tried aspercreme with no apparent benefit. That doesn't mean it couldn't be helpful for someone else. In my case, I identified the benefit as having come from camphor. That benefit was limited to actually reducing the size of the hard plaque to almost nothing. However, over time, it has gradually reestablished itself. That mind boggling plaque reduction was the only benefit I saw, all other symptoms remained pretty much unaffected. I noticed no real benefit at all from methyl salicylate (closely related to aspirin), the other Bengay component. As for ScarZone, I really don't know what is in it. The manufacturer doesn't disclose that information on their website and that alone raises a red flag for me. I really get suspicious when vendors make aggressive claims about a product and tell me absolutely zero about what it contains. But that is just me. I am currently curious about neem oil. Some people have gotten a good effect from emu oil. Some day I will get around to trying neem oil. - George
There was some discussion about this under "Progression of Peyronies Disease". Here is a link FYI. For brevity I only copied how it is used. QuoteHow do I use it?
Before you use this medicine, rub the ulcer or wound gently with a gauze pad soaked in sterile saline or Dakin's solution. Then rinse the wound with sterile saline solution. If you have any questions, talk to your health care provider or pharmacist.
If the wound is infected (has redness, warmth, or pus in or around it), apply an antibacterial ointment such as Neosporin. You can buy Neosporin without a prescription. If the infection continues, stop using the collagenase and ask your health care provider what to do.
Apply the collagenase directly to deep wounds with a wooden tongue depressor. Apply it to shallow wounds using a sterile gauze pad. Then cover the wound with a dressing, and tape the dressing securely. Remove any excess ointment each time you change the dressing.
Stop using collagenase when all dead tissue has been removed and healing is taking place.
source: http://www.fairview.org/healthlibrary/content/ma_collagen_ma.htm
And about collagenase in general:QuoteCollagenases, enzymes that break down the native collagen that holds animal tissues together, are made by a variety of microorganisms and by many different animal cells1. The most potent collagenase is the "crude" collagenase secreted by the anaerobic bacteria Clostridium histolyticum. The original 1953 fermentation and purification process described by MacLennan, Mandl and Howes2 was first adopted by Sigma-Aldrich and eventually improved upon for higher activity products. "Crude" collagenase refers to the fact that the material is actually a mixture of several different enzymes besides collagenase that act together to break down tissue. It is now known that two forms of the collagenase enzyme are present3, 4. With a few exceptions different commercial collagenase are all made from C. histolyticum, or are recombinant versions where Escherichia coli expresses a gene cloned from C. histolyticum.
source: http://www.sigmaaldrich.com/Area_of_Interest/Biochemicals/Enzyme_Explorer/Key_Resources/Collagenase_Guide.html
Hey...
Does anybody have some info about "pentoxifylline injection". Maybe it just the same as taking the pills? Tried to goggle it but turned up with very few results - mostly Chinese. So didn't want to spend time investigating if someone else already done it...
Thanks
Why would you want to inject it?
Thanks for replying... (spelling warning - english isn't my native language)
just thought that it would be better to treat the disease locally so that the rest of the body didn't get any sideeffects or perhaps it would be more efficient and maybe it possible to take a higher dose. But you are probably right. Looking at the way pentox work it isn't possible to get a local effect..
just came to think about it when I say this link - but pentoxifylline injections is used as i treatment for ischemia
http://cat.inist.fr/?aModele=afficheN&cpsidt=17055358
http://en.wikipedia.org/wiki/Ischemia
just wanted to hear if anyone knew something about it.
Interesting stuff!!! I'll look around for more references. Maybe someone knows more.
Don't worry. Your written English is better than some native English speakers I know. ;)
Liam
I know you guys will think I have gone over the deep end with this idea but this is it. Has the idea of injecting something into the scar tissue\plaque to increase the size been worked on? I'm thinking on the idea of how silicone was used to enlarge some body parts. I know silicone is a bad idea but used this just to explain the idea. If they use a graft surgery to lengthen the plaque maybe something injectable might work. Funny how when a person feels so hopeless, they can come up with ideas like this.
The graft replaces the scar tissue so there would be no point. There is nothing you can inject into a normal penis to make it larger. When you consider penis structure, the idea is totally unworkable. Putting bags of contained silicone in a breast is in no way a slightly similar concept. If you could fill the penis with silicone or an implant, it does not change the limitations of the thin outer wall of the penis.
Has anyone heard of or had acupuncture therapy? Ive read some on it. Just curious.....grasping at straws.
QuoteHas anyone heard of or had acupuncture therapy?
Verapamil injections :o ;D
I'm newly diagnosed-about 5 months ago-this disease is driving me crazy. I read about using a quarter or half pill of viagra every day. The viagra site mentions pill doses of 25, 50, and 100mg. What dosage of pill was being split.
Grant,
Welcome to the forum. I am glad you posted.
Grant, the daily Viagra dose is 25 - 50 mg which is 1/4 to 1/2 of a 100 mg Viagra. I would strongly suggest that if you are planning on doing that to get a good L-arginine and a prescription for pentox. These 3 together are informally referred to the PAV cocktail. The Viagra is by far the most expensive part of that combination.
Since these are "Oral Treatments" I will move these posts to that topic.
OK, I have a grasping at straws guestion. I've seen those commercials on TV about 'male enhancement' products. (Not that I put much stock in those products), but what ingredients do the makers of those products claim to have that increases penis size. It seems the only way to increase size would be to have the tissue swell and expand more than normal. Again, it's grasping at straws, but has anyone checked any of these products as a potential aid or treatment. It's a silly thought but I had to put it out there.
Enzyte and such is nothing but nutrients like zinc and arginine, along with herbs like ginko and Korean gensing etc etc. Nutrients cant change the size of a body part regardless of what smiling Bob implies on the commercials. Many of these same nutrients are in a multi-vitamin. Some of these ingredients may, and no doubt do have impact on blood flow and may increase firmness of erections since some are vaso-dilators and blood thinners.
You are much further ahead to just buy arginine or ginko or Horney Goatweed, straight so you know how much you are taking. These "specialized marketing products" have proprietary formulas that do not reveal how much of a specific nutrient the pill has. They often only have very small amounts of the nutrient or herb you want, and they may have lots of things you do not want.
No known substance whether oral, IV, or injected directly into the organ tissue - whether prescription, or over-the- counter, can increase the size of a mature penis. If one is ever developed, you won't have to ask and won't have to look for it. Every guy you meet will have a bottle and the news media will be recounting daily reports of stock prices and multi-billionaires.
For what it's worth. Biofeedback to increase blood flow. Hmmmmmm.
http://tde.sagepub.com/cgi/content/abstract/33/3/442
I actually like the idea of biofeedback although i don't know if it works for improving penile bloodflow. Has anyone heard of such a thing? I mean, peronally I have always had reasonable success with pornography. Oh sure, the feedback loop doesn't measure galvanic skin response or anything fancy like that, but I can definitely see when I'm getting the desired reaction. There you go fellas, if she asks, just tell the missus that you're practicing "poor man's biofeedback". Think of all the money you're saving - I mean, DVD's have to be way cheaper than a biofeedback therapist. If only they were covered by insurance.
my urogolist recently got to know a shiatsu-expert, that specialized in impotence. I'm considering seeing this guy. I didn't understand exactly how he operates, but he apparantly had some success concentrating on the "meridians" and trying to make the patient conscious of those meridians. he worked, no joke here, with horses also, race horses that were refusing to reproduce, according to himself he achieved a lot here, in cases where veteriniarians and their special aphrodiacs had failed
I've seen one urologist who has referred me to another uro. which I finally get to see at the months end. So until I see him I've been speaking with my family doctor about this disease. I told her about some of the scar creams I read about here-I've been using one and I feel that the plaque has softened somewhat and also decreased in size. It's only been about 3 weeks, but it's helping me feel better about this disease. My doctor suggested a product called 'Cicacare'. It is used for heart patients who have large scars from the staples after surgery. She said it comes in a cream and also in a fibrous strip. She thought that the strip would be good to try. This may be a Canadian name or brand. Has anyone heard about or tried something like this?
Is that pronounced like Sick of Care? :)
Anyway here is a link:
http://wound.smith-nephew.com/us/Standard.asp?NodeId=3023
I am doubtful of any benefit because the plaque is not on the surface like a scar. Sorry :(
The cream may not work but how wonderful that you have a doctor who is willing to try to help you and to think outside the box. Often, we simply need someone to demonstrate that they believe this is a problem worth tackling.
Tim
I certainly believe its worth a try. Little to lose and much to gain. Be sure to report back on your findings! - George
I'm with Liam on this one. I don't mean to be pessimistic, but I certainly harbor a fair amount of skepticism regarding the ability of most creams/topicals to penetrate far enough inside the penis to be effective. That being said, I also don't see any harm in it, and wish you success (make sure and keep us posted if you stick with it). Plus, depending on the consistency of the cream... application could actually be fun ;D
I went to a new uro last week. A few points.
1. His office was in Malvern, PA. Yes, guys - that Malvern! Collagenese injection capitol of the world! The man had Auxilium literature in his waiting room (Testim gel stuff, though). Of course, when I pointed this out to him and asked him about Xiaflex, he gave me a smirk and said he hadn't heard about it, but would look into it. (Come on, man!)
2. He grinned at me the whole appointment. I tend to talk a lot when nervous, and I didn't want to keep mum as yet another Uro prescribed "vitamin e and time" as my insurance runs out next month and I need treatments. So I threw it all out - everything I've learned from this board and beyond. He looked at me with a bemused grin, gave me viagra when I asked if he would prescribe me a VED (claiming - incorrectly, I think - that it can cause more scarring than it helps) and then wrote a prescription.
3. At first I thought it was topical verapamil and a transdermal, as it was vaguely classified as "Peyronie's Gel" and mixed by a pharmacist in our area's only natural pharmacy (the same place I buy my arganine and vite, actually). But when I filled it I saw that it was a gel comprised of Acetyl-L-Cartinine and something called EDTA. Cost me 100 bucks for a month's supply.
...So here's when I turn to the brotherhood. What's the word on topical A-L-Cartinine? What the hell is EDTA? Did I just get another "useless cream to keep this bigmouth busy so he can take his vitamin e and wait" treatment, or could this be a key treatment going forward?
I am late for clinic.
No clue about transdermal ALC - there are certainly no published data on it.
Otherwise, I am speechless.
Tim
Ocelot,
There are few things from the sublime to the ridiculous that escape notice or comment on the PDS forum. I have never heard of transdermal ALC as a treatment for any condition on earth much less for Peyronies Disease. I would ask this doctor for clinical data, trials, studies, or any verification that it even penetrates to the under-lying tissue. I would ask why it has not been prescribed by any other well known doctors pioneering Peyronies Disease treatments. Does he have some kind of exclusive information???
I am astounded that a doctor would stand and make statements like a VED causes more scar tissue, or pay $100.00 to rub ALC on your penis with no evidence. Are his patients supposed to accept this at face value because he is a doctor and he said it?
QuoteAre his patients supposed to accept this at face value because he is a doctor and he said it?
Unfortunately, this happens all the time.
ocelot, was this guy a real MD, or some sort of holistic quack? What's with the "natural pharmacy"?
None of this makes sense. Except the part about the doc tuning you out as soon as you mention "the Internet", that's a familiar experience.
Correct me if I am wrong Ocelot but I read right through the "natural Pharmacy" comment and assumed you really meant a compounding pharmacy.
Compounding pharmacies do not just dispense formulated name brand and generic drugs. They also compound drugs by combining ingredients they have right on the premise. They are few and far between compared to the corner drug stores and chains that handout name brand drugs.
Was I assuming too much or is this what you meant?
The reality is that EDTA, commonly used as a food preservative, is one of the most highly touted chelation agents around. The latest buz on EDTA is that it is supposedly capable of dissolving arterial plaque, much like products like Neprinol are supposed to do. The fervor around EDTA is so intense that even the National Institutes of Health are looking at launching a study on better understanding its capabilities. (http://nccam.nih.gov/news/2002/chelation/q-and-a.htm (http://nccam.nih.gov/news/2002/chelation/q-and-a.htm)) As I recall, EDTA is also believed to have certain transdermal qualities. So EDTA with a little ALC mixed in for good measure does not surprise me at all. But hopefully this doc really knows his stuff, because if you have amalgam fillings and the EDTA gets in the bloodstream in any quantity, there is the possibility of issues (http://grande.nal.usda.gov/ibids/index.php?mode2=detail&origin=ibids_references&therow=61336 (http://grande.nal.usda.gov/ibids/index.php?mode2=detail&origin=ibids_references&therow=61336)). This may or may not be of concern, but all indications are that EDTA DOES have the potential for possible side effects and interactions even though it is widely considered safe. Having said all that, lets hope that by some miracle it does in fact work. That would be really great news. But the reality is, its a long shot that is not completely without risk. - George
Ok, given all that buzz, where's the connection with Peyronie's? I google on "EDTA" and "fibrosis" and get nothing. I didn't think arterial plaque had any relationship to Peyronie's plaque other than the use of the word "plaque" to refer, generically, to any accumulation of bad stuff.
Is this just another "Thacker's Formula", based on the idea that Peyronie's tissue sometimes accumulates calcium, so anything that might tend to dissolve or otherwise remove calcium is a candidate? If so I don't buy it. Calcification of Peyronie's plaque (if it even occurs) happens late in the game. Just removing calcium will not in itself break up the collagen - the primary problem.
Ah! Sorry, I must have been comflating what actually happened with what I suspected happened. There is no transdermal agent in this cream, although I don't know what EDTA is.
Hawk - by natural pharmacy, yeah, I meant compounding pharmacy. I meant to distinguish this from CVS or Walgreens in that they deal with relatively expensive supplements and have an extensive supply, but also house a lisenced pharmacist.
This Doctor was legit - he was no quack. He was as "doctor" as they come. While in the waiting room an ambulance drove up and pulled in a man on a stretcher from the nearby hospital. There were no indications that he was a wacko physician.
I apologize for my syntax there, I think I threw everyone off with the words "natural" and that one line about transdermal agents. That was pure speculation on my part. All I know for sure: Prescribed by doctor, sold by pharmacist, it's a cream called "Peyronie's Gel" and contains only topical L-Carntinine and EDTA. They're little 10mm plastic vials, like syringes without a needle attatched, and I'm supposed to put 5mm on in the morning and 5 at night.
I was given no instructions about contraindications or potential toxic side effects, and the pharmacist even said that he'd prescribed this for the doctor before and the patient seemed to be happy with it. I got the feeling that was a little bit of feel-good pharmacy talk, though.
And George 999 - neither the doctor nor the pharmacist mentioned this to me - but that study you cite is slated to end in 2008. Maybe this Doctor knows something we don't? (hey, a little optimism?). I don't think this is a silver bullet - but maybe it'll work. I'm going to give it a shot and keep you all updated on it.
J, the connection with EDTA is that EDTA is believed to be a broad spectrum "chelate", meaning that it tends to combine with and remove "stuff" in the body that is not supposed to be there. As I stated in my post, there is no doubt that this is a long shot. But I can definitely see the reason that someone might be investigating its possibilities. One could conjecture, for example, that if EDTA can clear arterial plaque by attacking one or more of its key components, then it could possible have a similar effect on Peyronies plaque even though the overall composition of the two are not the same. My only concern is that ocelot go into this thing with open eyes knowing as much about EDTA as possible beforehand and being aware that it might have some potential dangers. Other than that it is certainly worth a try and more importantly, worth documenting on this site so that it can either be written off or further investigated depending on the results ocelot observes.
EDTA is also used as a preservative - I have no idea why it is in this cream. It is nice that someone is trying new things - but to do it without gathering data, and to charge a fee for it is not OK. That is not science - it's quackery IMHO.
Tim
EDTA* is a well-known (and cheap) chelating agent for metal ions. Perhaps they are hoping that it will work transdermally by dissolving the calcium ions in the plaque.
*ethylene diamine tetra-acetic acid - often sold as the sodium salt.
Regards
Percival
Thanks for the investigation into the cream, guys. Been using it for a week with nothing to report, save for the (probably psychosomatic) feeling that the largest nodule may be fractionally softer at it's lowest point beneath the skin (that's the best I can explain it. There was a recurrance of pain before I saw my uro, a dull ache right in the center of the main angle-causing scar, which has now resolved). The pharma said the gel would be a 6-9 month treatment, and I'm complimenting it with only VitE and L-Arganine...so we'll see.
I wonder about EDTA - I'm about 13 months into my Peyronies Disease, and from what I understand calcification is generally a symptom of far advanced and stable forms of the disease. I wonder if the EDTA is then "preventative" rather than a direct treatment? Get it in the scar to resolve any potential calcification and let the L-Cartinine do it's thing.
Fellas,
What I want to know is if doctors have actually cut the plaques out of a damaged penis, dead or alive, and analyzed the composition of the plaque? If so, what did they find? It would seem to be kind of difficult to know how to treat the disease if no one has ever determined exactly what it is. Another question I have alone the same line is whether the plaque is something that grew on the penis or if it is damaged tissue that would leave a void if it is cut out?
Quote from: ocelot556 on December 02, 2007, 12:22:25 PMI wonder about EDTA - I'm about 13 months into my Peyronies Disease, and from what I understand calcification is generally a symptom of far advanced and stable forms of the disease. I wonder if the EDTA is then "preventative" rather than a direct treatment? Get it in the scar to resolve any potential calcification and let the L-Cartinine do it's thing.
Don't confuse the role of calcium in Peyronies with "calcification". It is generally my understanding that ALL Peyronies plaque contains abnormal amounts of calcium. Presently the role of this abnormally excessive calcium embedded in the tissue is not completely understood. On the other hand, the term "calcification" describes the end stage of this process where the calcium concentration becomes so dense that the tissue itself becomes like bone. Thus there might be an advantage to dislodging calcium even in the absence of calcification. As I have said before, this approach really seems like a long shot to me, but it is also nevertheless very interesting and intriguing as to its potential benefits. But, then, thats me. I like to experiment with medical issues that have no known cure, and thus far that approach has served me well. My health status would be somewhere near basket case level if it were not for the fact that I have searched out alternative solutions and been willing to take carefully calculated risks. Only because of that approach, I am not on multiple prescription meds today. - George
Hi all,
I am new to Peyronies Disease however have a mild one for now. I have been to the urologist who confirmed my diagnosis.
I am taking vitamin E 400 twice a day and Bromoleine 3 times a day
I cannot take anti inflammatory drugs (NSAIDS) No steroidal anti inflammatory drugs since the affect my stomach.
I am trying triethanolamine salicylate which is a salicylate like Aspirin however it has great penetration through the skin and is easily available in the US and Canada. It has no smell and does not cause a warming sensation and has no odor.
Regards,
DCH
Welcome DCH - I also am new but the more I read the more I see that there are guys out there who have suffered far worse than me. I did the vit-e regimen, along with vit-c, ALC, Bromelain, ate pineapple like it was candy, bought two jars of Neprinol and finally found a URO who has a Peyronies Disease protocol that I am trying. I have had 4 iontophoresis treatments with Verapamil with 3 more scheduled. Now I am prescribed a compound that I must rub onto my penis two times a day that I will receive tomorrow. I don't even know the proper name for it but I feel like I am improving with the ionto so I will try anything he prescribes. Stay at it, don't give up and keep getting advice from these guys because everyone is different - something may work for you that doesn't work for me. But these guys have opened my eyes to a whole 'nother world. Keep posting - at least you are moving in a positive direction !! Hascal ( 30 degrees up and to the left )
Hascal, please post the components of this mixture as soon as you can. I'm interested to see what's in your doctor's topical concoction.
As most of you simply must be aware by now, I'm a firm subscriber to the theory that insulin resistance and faulty glucose metabolism are the root cause of Peyronies Disease. Accordingly, I've adjusted my diet, exercise, and supplement habits in an effort to attack that issue. But I am always looking for more ways to apply that theory and have recently run across this bit of conversation which I decided to pass along:
Quote from: AllExperts.comTopic: Urology -- Male issues
Expert: Arthur Goldstein, M.D.
Date: 7/16/2004
Subject: Peyronie's
Question
I want to know if ALT-711 can be used for the treatment of Peyronie's.
Can it make the condition harmful if used?
How a drug becomes a drug? Is it difficult to test it? Can't it be done in a medical university with a low budget?
Thanks
Wish You Best ...
Answer
Ulveron, to be honest with you I have never heard of ALT-711 before. I did some internet research (which I assume you did also) and found that this agent was developed by Altheon. It's use is based on the fact that with aging, fibrosis and stiffness occur because of the formation of AGEs (advanced glycosylation end products) that form cross links in various tissues (ie blood vessels). The process is medicated by the adherence of glucose to the surface of proteins. ALT-711 apparently can break or reduce these cross links thus reducing stiffness and allowing greater elasticity of the tissues. The studies are very preliminary and are being done on blood vessels. I could find no medical use referralable to Peyronie's diease but I suspect someone will try it experimentally if the agent is for real and the toxicity is tolerable. Not being in research, I cannot answer most of your questions about this product. To follow is some information I have put together on Peyronie's that you might find informative.
Peyronie's disease was first described in the 1700's. It is a common, benign disease of the penis of unknown cause characterized by the development of firm nodules (plaques) in the membrane surrounding the erectile bodies of the penis (corpora cavernosa). These nodules are masses of inelastic scar tissue. With erection, the nodules act like a bowstring and prevent that portion of the corpora from expanding. The result is curvature or deviation of the penis. Many therapies have been tried including medications (POTABA, vitamin E, etc.), ultrasound, radiation, steroid injections, etc. but none works universally well. Most often vitamin E 400 i.u. daily is used. It can't hurt and might help. Surgery is reserved for severe cases where either the deformity is extreme or the man is impotent and wishes this corrected.. Fortunately, these cases are in the minority. Surgical excision of the plaques of scar can be done but a tissue graft must be placed at the resected site. Graft shrinkage may result in recurrence of the problem. Great care must also be exercised at surgery not to damage sensory nerves which often are wrapped up in the scar. If a man is impotent, often the best solution is to place a penile prosthesis which corrects the deformity and solves the impotence problem. As both types of surgery have complication rates, this treatment should be reserved for the most severe cases. I suggest that you consult with a urologist to confirm the diagnosis and to decide if any type of therapy is indicated at this time. Good luck.
http://en.allexperts.com/q/Urology-Male-issues-989/Peyronie-s.htm (http://en.allexperts.com/q/Urology-Male-issues-989/Peyronie-s.htm)
Quote from: Life Extension FoundationTom,
I noticed that in your most recent update of your regimen at
http://www.morelife.org/personal/personal_health/his-regimen.html#changes
you indicate that you have started to take ALT-711 to reverse glycation damage (break AGEs). Do you know where people can procure this substance?
Thank you,
Stephen Flynn
::Obviously, I do know where people can procure this substance. But first I want to make clear that what I am taking does not come from Alteon, although it appears to be identical to the chemical which they have stated is ALT-711. The chemical involved is a generic chemical which has long been known and goes by (at least) two names: Phenacyldimethylthiazolium chloride or 4,5-dimethyl-3(2-oxo-phenylethyl)-thiazolium chloride. The chemicial itself is not patentable and Alteon only has a use patent on it (which is one of the reasons why they have difficulty getting investment funding).
A forum poster found it available at a small supplier and told me about it privately. In conversation with the supplier, I became satisfied that it was bona fida and was provided with standard chemical documentation for it. However, the supplier only wishes to sell it in bulk and does not want a lot of individual traffic.
I ordered 10 grams and am trying it (both Kitty and me), ramping up from 15 to 60 mg (1 mg/kg) daily over a three month period. So far (after 5 weeks at 15 mg daily) I have not noticed anything special.
My plan is to try it out and then be prepared to supply others who might wish to order some. The cost would be relative to what I have to pay for it each time, with some markup to pay for my efforts, and I would only be willing to selling it in bulk uncut form, so that in order to measure it without a specially sensitive scale the user would have to mix several days worth diluted with some other powder(s) as I am doing. Based on what I paid for my initial 10 grams, the selling price should be about US$200 for 10 grams which is the minimum that I would be willing to supply. Currently, I am collecting orders from people who are interested and I will make a final decision on supplying this product if/when I see sufficient interest.
Later note: If you are interested in purchase please reply to me privately (tom@morelife.org), not to this thread.::
Lots more interesting info here: http://forum.lef.org/default.aspx?f=37&m=17107 (http://forum.lef.org/default.aspx?f=37&m=17107)
- George
I notice these posts are from back in 2001. Have any positive results been reported in the 6 years since these posts?
Hawk, here are some links that directly address your question:
http://www.fightaging.org/archives/001000.php (http://www.fightaging.org/archives/001000.php)
http://www.fightaging.org/archives/001340.php (http://www.fightaging.org/archives/001340.php)
The key point that REALLY interests me is that it intersects with my belief that Peyronies is really a product of trauma + INTRACELLULAR glucose deprivation + EXTRACELLULAR aberrant glycosylation (the combining of glucose with protein) to form a tight, abnormal AGE infested extracellular matrix of collagen that occur in the presence of insulin resistance and elevated insulin levels. When you start to google some of these terms like "glycosylation" along with "peyronies", you just get a lot of very interesting hits that really bring out the depth of the interaction between glucose and peyronies, as well as all of the other fibrotic syndromes. And while we know that various types of plaque and fibrosis have differing compositions, perhaps glycosylation is a major common factor and is the thing that we need to learn how to both PREVENT and REVERSE. Certainly if it is an ongoing process, it won't matter how effective we are at REVERSING it, since it will likely form as quickly as we pull it apart. Thus, to successfully get rid of it, you have to both interdict the process itself AND undo the existing damage. I am convinced there is a very real connection here that most of you are not seeing. The links just fan out in all directions. For example, the most commonly used "treatment" for Peyronies is Vitamin E. My own experience is that it DOES have a subtle effect against Peyronies. But when you dig a little deeper, lo and behold, you find out that there is a connection between vitamin E and glycosylation: http://care.diabetesjournals.org/cgi/content/abstract/14/1/68 (http://care.diabetesjournals.org/cgi/content/abstract/14/1/68). And there is also a connection between Pentox and glycosylation http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=11020463&ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=11020463&ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum). ALT-711 is just one additional proposed method of attacking this issue. Perhaps there are others out there and perhaps we need to be looking in that direction as well as chasing down the TGF-beta-1 connection. And I am NOT suggesting at all that we should be ignoring the TGF-beta link either. But we need to be looking in multiple directions for these potential broader vectors and glycosylation (also referred to as glycation) and AGE creation appear to be on the upstream side of TGF-beta-1 and therefore perhaps even more important in terms of prevention and treatment.
Increased cell death rate due to faulty glucose metabolism would also tend to explain a loss of elastin, since elastin cells are long lived and not readily replaceable whereas collagen is readily replaceable. Thus high cell turnover caused by glucose issues would result in elastin deficient tissue. This whole thing just reeks of too much glucose in the body as a result of diets that are extremely calorie dense as opposed to nutrient dense. This is a connection that just can't be ignored if we really want to defeat this disease. - George
Here is another intersection of Peyronies and glycoslycation which happens to involve ALC:
QuoteAuthor: Biagiotti G, Cavallini G.
Date: 7/2001
Journal: BJU Int
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.
http://content.nhiondemand.com/psv/view-abs.asp?fnid=113043&absid=105943 (http://content.nhiondemand.com/psv/view-abs.asp?fnid=113043&absid=105943)
QuoteAuthor: Swamy-Mruthinti S, Carter AL.
Date: 7/1999
Journal: Exp Eye Res
Although the role of carnitine system in the ocular tissues is not clearly understood, earlier studies showed that lenticular levels of L -carnitine were the highest among ocular tissues and there was a dramatic depletion of lenticular L -carnitine and acetyl- L -carnitine in streptozotocin-diabetic rats. As protein glycation has been implicated in the development of several diabetic complications including cataracts, this study was initiated to show the possible effects of L -carnitine and acetyl- L -carnitine on the glycation and advanced glycation (AGEs) of lens proteins. Calf lens soluble fraction (crystallins) was incubated with 50 m m glucose (containing14C glucose) with or without 5-50 m ml -carnitine, 5-50 m m acetyl- L -carnitine and 5-50 m m acetyl salicylic acid, for 15 days. The results show that while L -carnitine did not have any effect on in vitro glycation of lens crystallins, acetyl- L -carnitine and acetyl salicylic acid decreased crystallin glycation by 42% and 63%, respectively-this decrease was concentration dependent. Glycated crystallins were separated on HPLC which showed that the rate of glycation is in the following order: alpha>beta>gamma. Interestingly, acetyl- L -carnitine inhibited glycation of alpha crystallin more than other crystallins. In vitro incubations with [3H-acetyl] acetyl- L -carnitine showed that acetyl- L -carnitine acetylates lens crystallins (non-enzymatically) and alpha crystallin is the major acetylated protein. Furthermore, there was a 70% reduction in anti-AGE antibody reactivity when 50 m m acetyl- L -carnitine was included in the incubation of lens crystallins and 10 m m erythrose, suggesting that inhibition of glycation by acetyl- L -carnitine also affected the generation of AGEs. This in vitro study shows, for the first time, that acetyl- L -carnitine could acetylate potential glycation sites of lens crystallins, and protect them from glycation-mediated protein damage.
http://content.nhiondemand.com/psv/view-abs.asp?fnid=113042&absid=105946 (http://content.nhiondemand.com/psv/view-abs.asp?fnid=113042&absid=105946)
Interestingly enough, there is also an ed connection with glycalysation:
QuoteTitle: Advanced glycation end products in human penis: elevation in diabetic tissue, site of deposition, and possible effect through iNOS or eNOS.
Author: Seftel, A D : Vaziri, N D : Ni, Z : Razmjouei, K : Fogarty, J : Hampel, N : Polak, J : Wang, R Z : Ferguson, K : Block, C : Haas, C
Citation: Urology. 1997 Dec; 50(6): 1016-26
Abstract: OBJECTIVES: We hypothesized that advanced glycation end product (AGE) formation contributes to erectile dysfunction (ED) by quenching nitric oxide. Our first goal was to identify the specific AGE pentosidine in the diabetic human penis. Because AGE-mediated effects may involve inducible nitric oxide synthase (iNOS), we performed immunohistochemical and Western blot analysis of diabetic and nondiabetic human penile tissue for iNOS. Finally, because AGEs may act intracellularly to affect proteins, we set out to identify endothelial NOS (eNOS) in the human penis as an initial step in examining a possible intracellular interaction between eNOS and AGEs. METHODS: We performed high-performance liquid chromatographic analysis of diabetic human penile corpus cavernosum and serum for pentosidine and performed immunohistochemical, electron microscopic (EM), and Western blot analysis of the diabetic and nondiabetic penile corpus cavernosum and tunica for pyrraline, iNOS, and eNOS (and neural NOS [nNOS] for comparative purposes) via standard methods. RESULTS: We found a significant elevation of pentosidine in the penile tissue but not the serum of diabetic patients (average age 55.6 +/- 2.3 years) compared with that of nondiabetic patients (average age 61.8 +/- 3.6 years). Pentosidine was 117.06 +/- 9.19 pmol/mg collagen in the diabetic tunica versus 77.58 +/- 5.5 pmol/mg collagen in the nondiabetic tunica (P less than 0.01) and 74.58 +/- 8.49 pmol/mg collagen in the diabetic corpus cavernosum versus 46.59 +/- 2.53 pmol/mg collagen in the nondiabetic corpus cavernosum (P less than 0.01), suggesting a tissue-specific effect of the AGEs. We localized the site of deposition of the specific AGE pyrraline to the human penile tunica and the penile corpus cavernosum collagen. Immunohistochemical and EM analysis localized eNOS and iNOS to the cavernosal endothelium and smooth muscle. Western blot analysis in 6 patients revealed the following: iNOS, but no eNOS, in penile tissue from 1 insulin-dependent diabetic man; eNOS only in 1 man after radical prostatectomy; both eNOS and iNOS in 2 men with Peyronie's disease, as well as in 2 other men with impotence and hypertension. Finally, the specific iNOS inhibitor PNU-19451A significantly augmented relaxation of precontracted human cavernosal tissue, from 64.7% +/- 5.58 to 80.03% +/- 4.55 at 10 microM acetylcholine and 65.06% +/- 2.84 to 86.16% +/- 3.96 at 0.1 mM acetylcholine (n = 4, P less than 0.002 and P less than 0.02, respectively). CONCLUSIONS: AGEs are elevated in diabetic human penile tissue, but not in serum, and are localized to the collagen of the penile tunica and corpus cavernosum. We identified eNOS and iNOS in the human penile cavernosal smooth muscle and endothelium. The augmentation of cavernosal relaxation with a specific iNOS inhibitor, combined with the identification of iNOS protein, but not eNOS, in a patient with severe diabetes and ED, allows for speculation of a pathophysiologic mechanism for AGE-mediated ED via upregulation of iNOS and downregulation of eNOS. These data provide further insight into the mechanisms of advanced glycation end product-mediated ED and provide a foundation for further study.
Review References: None
Notes: None
Language: English
Publication Type: Journal-Article
Keywords: Diabetes Mellitus, Insulin Dependent metabolism : Diabetes Mellitus, Non Insulin Dependent metabolism : Glycosylation End Products, Advanced metabolism : Nitric Oxide Synthase biosynthesis : Penis metabolism
URL: No URL associated with this record.
//
Ocelot556 - After reading your post #491 - on 11/28/07, it sounds like exactly the same thing. Mine was labeled " VUE GEL " , in syringes without needles and the same dosage and application. It is the week-end here and I cannot reach the Pharmacist who compounded the gel. As soon as they will answer the phone Monday I will get the formulation and post it. I have applied it only two times so far and can feel no noticeable difference - ie stinging or burning. I will run thru the three syringes according to his directions and see what happens. Later - HASCAL.
There is a new procedure now being done at Duke University in Durham North Carolina and they use as injection to dissolve the fibrous tissue in the penis and my brother also has the same condition and has an appointment next month. Check this out for yourself.
Moved by Moderator
Clay,
Can you tell us more about the procedure, or give us a link, if available. If no link is available then how about copying and pasting something for us?
There are no clinical trials currently ongoing at Duke in this topic area. Please let us know what it is he is going to get done. Is he getting Verapamil injections? (I bet that is it).
Tim
Tim the reason he is going to Duke is for his hands where they give the injection for the disease of Duouytren and is associated with Peyronie in some cases. It is hereditary and sometimes it causes the same thing in the penis over a short period of time. Some not as severe as others. I will keep you informed as soon as I hear back from my brother. Like everyone else I have tried everything except surgery and may rule that out because mine is short enough as it is. If I was well endowed I could lose an inch and it not matter but I am not that fortunate. I saw a doctor in Charlotte and he told me they had been experimenting with this in New York for 4 years but was not as of then FDA approved. We all can only hope as the alternatives are not all that great.
Clay
Clay,
Thanks for the post. We have been on top of new drug trials including collegenase. Read more under the topic " Developmental drugs and treatments - (Still in trial or not approved for Peyronies Disease)". Here is an article from a link posted there:
QuoteAuxilium Pharmaceuticals, Inc. Announces First Patients Dosed in XIAFLEX(TM) U.S. Pivotal Phase III Study
Enrollment in Australian Phase III Trial Also Has Commenced MALVERN, PA--(MARKET WIRE)--Sep 10, 2007 -- Auxilium Pharmaceuticals, Inc. (NasdaqGM:AUXL - News) today announced that the first patients have been dosed in the Company's second U.S. phase III pivotal trial and the Australian phase III study for XIAFLEX(TM) for the treatment of Dupuytren's contracture, a disabling and recurring condition in which the joints in the hand contract, impairing patients' ability to straighten and move their fingers.
"We are tremendously excited about achieving these important development milestones for XIAFLEX," said Mr. Armando Anido, Chief Executive Officer and President of Auxilium. "XIAFLEX is a company-transforming product opportunity that has the potential to be the first, effective, non-surgical treatment for patients with Dupuytren's contracture."
The U.S. CORD (Collagenase Option for Reducing Dupuytren's) I study is a double-blind, randomized, placebo-controlled study of XIAFLEX involving approximately 216 patients at over 15 sites throughout the U.S. Patients in the study will be randomized on a 2:1 basis in favor of XIAFLEX treatment. To qualify for the study, patients must have at least 20 degrees of contracture. The primary endpoint of the study is to determine if XIAFLEX can reduce the contracture angle of the primary joint to within 0 to 5 degrees of normal after up to three injections of XIAFLEX.
Upon completion of the double-blind study, all patients will be enrolled in a separate open label extension study in which the patient will receive active drug if they were initially given placebo and/or they have the opportunity to have other affected joints treated. Data from the double-blind study and the open label extension study will form the basis of 12-month follow-up information to be used in the Biologics License Application ("BLA") for marketing approval of XIAFLEX submitted to the U.S. Food and Drug Administration ("FDA").
The Australian CORD II study is a double-blind, randomized, placebo-controlled study involving approximately 60 patients and follows a protocol similar to that of the U.S. pivotal phase III trial and its open label extension.
The Company expects that enrollment in the U.S. study will be completed by the end of this year, and that they will file a BLA with the FDA in early 2009.
About Dupuytren's Contracture
Dupuytren's contracture is a condition that involves contracture of joints in the hand that impairs patients' ability to straighten and move their fingers due to a thickening and shortening of the normal ligaments of the palm and fingers. As the disease progresses, functionality of the hand is severely impaired. The incidence of Dupuytren's contracture is highest in Caucasians, historically those of Northern European descent. Most cases of Dupuytren's contracture occur in patients older than 50 years.(1)
The most frequently affected joints associated with Dupuytren's contracture are the joints called the metacarpophalangeal joint, or MP joint, which is the joint closest to the palm of the hand and the proximal interphalangeal joint, or the PIP joint, which is the middle joint in the finger. The little finger and ring finger are most frequently involved.
(1) Badalamente, M. A., Hurst, L. C. et al., Collagen as a Clinical Target: Nonoperative Treatment of Dupuytren's Disease, The Journal of Hand Surgery, (2002;27A:788-798)
About Auxilium
Auxilium Pharmaceuticals, Inc. is a specialty biopharmaceutical company with a focus on developing and marketing to urologists, endocrinologists, orthopedists and select primary care physicians. Auxilium markets Testim® 1%, a topical testosterone gel, for the treatment of hypogonadism through its approximately 190-person sales and marketing team. Auxilium has four projects in clinical development. XIAFLEX™ (clostridial collagenase for injection), formerly referred to as AA4500, is in phase III of development for the treatment of Dupuytren's contracture and is in phase II of development for the treatment of Peyronie's disease and Frozen Shoulder syndrome (Adhesive Capsulitis). Auxilium's transmucosal film product candidate for the treatment of overactive bladder (AA4010) is in phase I of development. The Company is currently seeking a partner to further develop this product candidate. Auxilium has two pain products using its transmucosal film delivery system in pre-clinical development. Auxilium has rights to six additional pain products and products for hormone replacement and urologic disease using its transmucosal film delivery system. Auxilium also has options to all indications using XIAFLEX for non-topical formulations. For additional information, visit http://www.auxilium.com.
SAFE HARBOR STATEMENT UNDER THE PRIVATE SECURITIES LITIGATION REFORM ACT OF 1995
link: http://ir.auxilium.com/phoenix.zhtml?c=142125&p=irol-newsArticle&ID=1050270&highlight=
Hope this has been helpful. Look around at all the topics. We have some "GOOD STUFF" ;) And, please continue to post!
Liam
Has anybody tried Cryotherapy for curing Peyronies Disease or other such conditions?
Cryotherapy is therapy which use extreme cold to increase blood circulation in muscles, tissues, so in the whole body and much more...it improves number of serious conditions. You can read something about it here:
http://en.wikipedia.org/wiki/Cryogenic_chamber_therapy
Ralf,
I have never heard cryotherapy even suggested as a treatment for Peyronies Disease and I have heard no evidence that it is even worth a look or a study. I do know that cryotherapy is used in prostate cancer to actually kill tissue. Cold actually suppresses blood flow which is why it is used for inflammation. It is also the reason a penis shrivels up in cold water.
The link you provided says that a quick dip in a cryo tank releases endorphins. Endorphins have know known role in Peyronies Disease.
Well, I have read interesting things about chamber cryotherapy..
After 2-3 minutes of being freezed to cca -120 C degrees (-184 F) there is increased amount of hormones in blood, as well as endorphines..Immediately after this freezing procedure, its necessary to do some excersice for cca 15 minutes to increase blood circulation, which circulate three or four times faster than ussual...
Its improving reumatic conditions as well as other types of inflammation, fybromyalgia, multiple sclerosis, increasing blood flow in internal organs, better peripheral nerve respond and so on...
Cryotherapy has more meanings in medicine, look here: http://en.wikipedia.org/wiki/Cryotherapy
Cryosurgery is sometimes called cryotherapy...and maybe thats the proper meaning for what you mentioned about the prostate cancer.. ???
Well, who knows, maybe it helps a bit...if I find some courage I will try it ;)
Greetings...
I am a brand new member and probably won't be active for very long at all, but I have some information that I thought may be helpful to someone, so here goes. I have to confess that I'm a little confused by the forum discussion process, but I'll post this and then check again to see if anyone responds or wants further info...
I'm a 57 year old male with Dupuytren's Contracture - that's a curling up of the fingers that occurs mostly in males - and I was doing some internet research on the condition, etc, etc. In my reading, I saw that this condition is somewhat related, or at least there was mention of, Peyronie's Disease. That caught my eye because I had Peyronie's Desease many years ago, but was completely cured back then and haven't thought of it much since.
I was probably in my early 30's when I developed Peyronie's Desease very suddenly. My penis bent over about in the middle and it was very painfull whenever I had an erection. Intercourse was definitely not possible and, to be honest, I wasn't as much concerned with that as I was with the pain that I was experiencing every time I had an erection. I still got erections in the AM and when with my wife, but I just couldn't bear to have any kind of sex because it was just too painfull to have an erection. Since we live fairly close to the Mayo Clinic in Rochester, Minnesota, I went up to see a doctor. I was interested in treatment to correct whatever it was that I had, but I actually planned to ask him for some kind of medicine that would prevent me from getting an erection, if there wasn't going to be any "fix" to my problem.
Well... the doctor examined me and immediately said that I had Peyronie's Disease. We didn't really discuss a whole lot of treatment plans as I recall. He just said that he was going to try radiation to correct it. He made it sound like that would work in many cases and that it was worth trying, so I just went along with it. I remember going to a couple of treatments (I think - may have been just one) and then I was supposed to just see how things went and go back if I had any more problems, concerns. As I recall, I didn't notice any change immediately, but the condition completely reversed itself over the course of the following several weeks and I just never went back in to see him again because there seemed to be no need. I was just VERY happy to be rid of the condition!! I just figured it was a simple problem with a simple solution, and that was that... and I haven't had any side effects from the radiation, that I can think of, some 25 years down the road.
So... bottom line is that I don't have any problems anymore, and I have been very normal in this regard ever since. I haven't searched your site extensively, but was immediately struck, I guess, by the lack of obvious talk about radiation treatment for this condition. It worked for me, so I figured it would be a very common treatment, in my mind. If anyone would like me to do some research on my medical records to find out who the doctor was, etc... I would be more than happy to do that. I'm really just guessing at the dates and timeline here, using my (poor) memory to recall this stuff, but I wanted to post this just in case it would help anyone. It is a MISERABLE condition to have and my heart goes out to anyone who is suffering from it.
Dan
I also have Dupuytren's and Peyronie's.
Radiotherapy is now being tried for Dupuytren's and some successes are reported. Naturally, it's only available in Europe Check this link:
http://www.dupuytren-online.info/radiation_therapy.html
It could probably work on Peyronie's too, but I've heard of no MD willing to try it. It does sound a bit dicey to me because radiation can actually cause fibrosis; this I think is the main reason that radiation therapy for cancer has to be strictly limited. But he people doing radiotherapy for Dupuytren's are well aware of that possibility and feel they're avoiding it.
Wow... Just checking back in and am amazed (again) because it really does look like this (radiation) treatment is somewhat of a new concept to many of the people in this forum. Based on my personal experience, I am naturally of the mindset that this would have been a very common treatment. As I recall, there was a very limited number of treatments (maybe just one) and I don't recall them being for a long duration at all - just seconds. They had a lead covering over me with just a small hole in it for my penis to poke through, as I remember. I guess I was thinking that I was protected from the radiation by that lead sheet.
Tell you what... I will contact the Mayo Clinic and see if I can get any information about all of this from them. I don't blame anyone for being more than a little skeptical about this, but to be very honest, it's not like I had this done in some out-of-the-way clinic somewhere and you should be immediately dismissing the information. This was done at the Mayo Clinic and they have a very reputable history. Give me a few days here and I'll see what I can come up with...
Dan
Anderdan,
It would be great if you can get us some more info on this topic. Who knows may be this is a good treatment that was overlooked to avoid side effects.
Any way, thanks for the information.
Pal
Welcome Anderdan,
Thanks for taking time to post about your experience with Peyronies Disease. It is especially appreciated that you would take the time to do so when you have not been troubled by it for many years.
I am not sure I followed this entire conversation but I have long heard of radiation for Peyronies Disease although I am of the impression it never came into common use because of lack of results. My impressions are that it was an older treatment that was tried somewhat for years and discarded. I know I have read about it and that Old Man has posted about it before.
Someone would have to show me on hell of an impressive study before they would bombard my penis with radiation. I am not even fond of getting x-rays.
Quote from: Liam on December 11, 2007, 06:06:55 AM
Clay,
Thanks for the post. We have been on top of new drug trials including collegenase. Read more under the topic " Developmental drugs and treatments - (Still in trial or not approved for Peyronies Disease)". Here is an article from a link posted there:
Liam:
Thank you for your help. I am going to relay this information to my urologist tomorrow if possible and see if he can find Xiaflex and I will be his trial patient. I will keep all informed and I may mention the radiation treatment as I am 65 and do not care if it make me sterile as I have a grandchild in her 3rd year of college.
Clay
Quote shortened per forum rules - Hawk
Hi Guys...
I did just a bit of research and discovered that radiation is NOT one of the listed treatment options at the Mayo Clinic in Rochester, MN. They have a website with information at:
http://www.mayoclinic.org/peyronies-disease/
Naturally, this seems odd to me because I specifically recall that this was the very FIRST option that was presented to me by the urologist back in the early 1980's. I spoke with my wife last night and she remembered that they had me on vitamin E during that period of time also. I also remember that they mentioned that they might contact me with a follow-up survey at some point, but they never did. I always thought it would have been good to let them know that I got 100% relief, but I never did anything about it either.
So... it certainly doesn't sound like this is something that they recommend any longer, but all I can say is that it definitely worked for me. But, of course, I don't even remotely pretend to be any sort of expert on the subject. I have filled out the Request for Information form from the Mayo Clinic and am asking for all information on the diagnosis and treatment that I received for Peyronie's Disease back then. I would guess that will take a bit of time to get, but when I do get that info, I will share it with you, just for the sake of information, in case anyone is interested.
This is a miserable condition/disease and I remember it well. Again, my heart goes out to anyone who is afflicted with this and I am more than happy to help in any way I can. Of course, there is little I CAN do, except share whatever information I have in the hope that it will help someone get closer to finding relief from the effects of this disease. My hat goes off to whoever started this website and forum. I'm sure it is a great resource for many people.
Best regards.... Dan
I think the deal with radiation has to do with the fact that radiation has risks. And since Peyronies, however devastating, is not life threatening, the medical community has pretty much decided that it doesn't warrant the risks, no matter how effective the therapy might be. The bottom line is that the medical community is now getting very concerned even about CT scans, let alone higher dose radiation. So I don't think we can expect a cure from that technology. Its a case of perception here that the risks simply outweigh the benefits. - George
Three papers. Others out therer. Seems like a lot of Peyronies Disease literature with fair results touted as wonderful. Mulhall raises some good questions about safety.
1)
Rodrigues CI. Njo KH. Karim AB.
Results of radiotherapy and vitamin E in the treatment of Peyronie's disease.
International Journal of Radiation Oncology, Biology, Physics. 31(3):571-6, 1995 Feb 1.
Abstract PURPOSE: A retrospective analysis of 38 patients with Peyronie's disease treated with primary radiotherapy in the period of 1975-1993. METHODS AND MATERIALS: Important complaints were curvature of the penis during erection for 92% of the patients, painful erection for 68%, and problems with sexual intercourse for 37.5%. Average size of all indurated plaques was 2.5 cm. The average pretreatment duration of symptoms was 9.5 months. All 38 patients were irradiated with orthovoltage radiotherapy (200 and 250 kV photons) with a total dose of 9 Gy in 5 alternating days (regimen A). Because of minimal response, 16 patients were irradiated again with another 9 Gy in 5 days and finally received 18 Gy (regimen B). RESULTS: With regimen A, a satisfying improvement was achieved for the majority of the patients: 65% experienced less penile pain during erection, 40% reported less curvature of the penis, and 47% experienced an improvement of their sex life. With the higher dose of regimen B there was an additional improvement for a minority of the patients: 25% reported less pain during erection, 21% had less curvature, and 29% experienced an improved sex life. With regimen A, pain improvement was statistically significantly superior when compared to regimen B. For all other improvements (curvature, sexual intercourse, and induration) no dose-response relation could be demonstrated between regimen A and the higher dose regimen B. No patient experienced any radiation-induced morbidity. After evaluating regimen A and regimen B, the overall result was that 76% experienced less pain, 60% reported an improved sex life, and 48% had a diminished curvature during erection. CONCLUSION: From this analysis it can be concluded that the distressing symptoms of Peyronie's disease can be treated successfully with radiotherapy. Radiotherapy proves to be a safe, noninvasive treatment method without causing morbidity. Low-dose radiotherapy with only a few fractions is recommended for an effective treatment result.
******************
2)
Mulhall JP. Branch J. Lubrano T. Shankey TV.
Department of Urology, Stritch School of Medicine, Loyola University Medical Center, Maywood, IL, USA.
Radiation increases fibrogenic cytokine expression by Peyronie's disease fibroblasts.
Journal of Urology. 170(1):281-4, 2003 Jul.
Abstract PURPOSE: Peyronie's disease is a crippling penile deformity that results from fibrosis in the tunica albuginea. To our knowledge its cause is unknown and empirical therapies are used extensively. A factor involved in the development of Peyronie's disease is fibrogenic cytokine over expression. Radiation therapy is an empirical therapy for this condition and, while some data suggest a role for it, no literature exists on the effects of radiation on tunical tissue or cells derived from this tissue. We evaluated the effect of radiation on fibrogenic cytokine production in cells cultured from Peyronie's disease plaque tissue. METHODS AND MATERIALS: Using a well established cell culture model cells derived from Peyronie's disease plaque tissue and neonatal foreskins were irradiated with 5 Gy (treatment group) or left nonirradiated (control group). At 24 hours cells were harvested and the supernatant was analyzed using enzyme-linked immunosorbent assay to determine the levels of the 2 fibrogenic cytokines basic fibroblast growth factor and platelet-derived growth factor-AB. RESULTS: Four Peyronie's disease plaque derived cultures and 2 neonatal foreskin derived cultures were analyzed. All plaque derived fibroblasts demonstrated significant elevations in basic fibroblast growth factor and platelet-derived growth factor-AB compared with foreskin derived fibroblasts. CONCLUSIONS: These data suggest that radiation may in fact increase the production of fibrogenic cytokines, which may promote the fibrotic process involved in Peyronie's disease. Further study is aimed at defining the effect of irradiation on plaque tissue.
*****************
3)
Niewald, Marcus. Wenzlawowicz, Knut V. Fleckenstein, Jochen. Wisser, Lothar. Derouet, Harry. Rube, Christian.
Clinic for Radiooncology, The Saarland University Hospital, Homburg, Germany.
Results of radiotherapy for Peyronie's disease.
International Journal of Radiation Oncology, Biology, Physics. 64(1):258-62, 2006 Jan 1.
Abstract PURPOSE: To retrospectively review the results of radiotherapy for Peyronie's disease. PATIENTS AND METHODS: In the time interval 1983-2000, 154 patients in our clinic were irradiated for Peyronie's disease. Of those, 101 had at least one complete follow-up data set and are the subject of this study. In the majority of patients, penis deviation was between 30 and 50 degrees , there were one or two indurated foci with a diameter between 5 and 15 mm. Pain was recorded in 48/92 patients. Seventy-two of the 101 patients received radiotherapy with a total dose of 30 Gy, and 25 received 36 Gy in daily fractions of 2.0 Gy. The remaining patients received the following dosage: 34 Gy (1 patient), 38-40 Gy (3 patients). Mean duration of follow-up was 5 years. RESULTS: The best results ever at any time during follow-up were an improvement of deviation in 47%, reduction of number of foci in 32%, reduction of size of foci in 49%, and less induration in 52%. Approximately 50% reported pain relief after radiotherapy. There were 28 patients with mild acute dermatitis and only 4 patients with mild urethritis. There were no long-term side effects. CONCLUSION: Our results compare well with those of other studies in the literature. In our patient cohort, radiotherapy was an effective therapy option with only very rare and mild side effects.
Radiotherapy seems to fall in the same category as Xiaflex/AA4500 and the legendary "Leriche" procedure: if some clinic were to start using it regularly, they'd steadily refine their technique with regard to dosage and targeting, and ultimately it would probably work pretty well. I'm hoping the results with Dupuytren's continue to be good as that might help build a case for Peyronie's.
Recently I read a rather depressing assessment of the drug industry. It's conclusion was that R&D spending is way down as the big companies decide that developing and approving new drugs isn't worth the expense and risk. Instead, money is poured into advertising and promotion of existing products. Sometimes old products simply get new names and packaging and a new campaign - featuring more inane "ask your doctor about" ads - is launched to give the public the idea that it's some new breakthrough.
I don't blame American doctors for this situatiom. But more and more I'm thinking that in the future, the price of sophisticated new procedures - even minor ones - is going to include air fare to Europe or India.
Hello again guys...
I'm the fellow who brought up this radiotherapy alternative a short time ago. I wrote earlier and said that I would ask the Mayo Clininc for my records and get back to you so here I am again. After looking at the medical records, I see that I was 35 at the time (I'm 57 now) and had begun to develop Peyronie's 7-8 months earlier. A lot of the initial visit comments are practically illegible due to the pitful doctor's handwriting - I suppose it could be deciphered in time. But, the "Treatment Summary Sheet" is the most important, I suppose, and is type-written, so it is very clear. It reads as follows:
PERTINENT HISTORY AND CONSULTATION NOTES
Thirty-five year old male with a 7-8 month history of the development of Peyronie's Disease. Pain with erection and curvature of penis with erection. Impossible to have intercourse at this time. He has had a trial of Potaba and Vitamin E with no help.
Plan 500 rad in one fraction according to the paper of Dr. Furlow and Dr. Robert Lee. Discussed with Dr. Lee. Discussed with patient and wife. They wish to proceed. There is a very minimal risk of the development of a cancer secondary to XRT. No patient has developed this problem to date.
SJ Buskirk/dc Dated 4/2/86
There is also a Treatment Summary at the bottom of the page showing that I only had one treatment with a dosage of "500 cGys", as well as numbers filled into the columns headed "Modality", "Technique", "Field", "Field Size", "SSD(SAD)", etc.
I'm not sure if any of these doctors are still at the Mayo Clinic, but if anyone would like me to find out, I would be more than happy to check into that for you. I would also be more than happy to scan these records and email you a copy if you would like to contact me personally. As I said before, I certainly don't pretend to be an expert on any of this. I just know that (as the blind man in the Bible said) "I was once blind, and now I can see". This treatment completely cured me, and I am almost 23 years "down the road" now with no recurrence of the disease, or side effects of the treatment apparent. I'm not trying to tell anyone what to do, but simply offer this information in the hope that it may help someone in battling this awful disease.
Dan
Dan,
Thanks for posting. I am curious about the onset of your condition. Did an incident precede the bend? Did the bend appear quickly and did you notice plaque or nodules? From start to end how long did you have it? How long had you had it when treatment began?
Thanks again!!!
Liam
Liam...
Interesting question... "Did an incident precede the bend?" That is debateable, I suppose. I know that a short time before the problem arose, my wife and I were having sex and, with her on top, I remember that (hard to explain) my penis got bent backwards in the middle. It kind of hurt, but I didn't think anything of it. Maybe that wasn't the cause - no way to know for sure - but weeks later, I started noticing that it began kinking sideways and becoming painful during erection. This was the onset of the Peyronies. I mentioned the earlier incident to my doctor when I went in for the first time because he asked the same question you did. He then said that there is no shortage of debate among those familiar with the disease as to whether it is causes by trauma, or whether it is caused by another reason. Personally, I would probably lean towards the trauma theory, but I'm no expert, that's for sure.
Did it come on quickly? I remember it happening somewhat gradually, but can't remember for sure. According to the medical records, I had the condition for 7-8 months before seeking treatment, so I would guess that it happened gradually over that period of time. I know that it became so painful that I didn't put up with that for long before seeking medical help.
Start to finish? I would say that it appeared gradually over the course of 6-7 months... then I made an appointment to see a doctor... tried some medication and Vitamin E with no success for a month or so... and then had the radiation. Then... it seems to me that I was completely back to my old self in just a couple weeks following the radiation.
Hope this helps...
Dan
Thanks!!! Very interesting.
Dear Anderdan.
Thanks for your kind help in recalling what you did and providing us details. It really helps figure out what we might want to pursue in the future. It seems to have no benefit to you to do this making it all the more appreciated.
Tim
Hi guys this is my first post. It is my understanding that elastin degredation is a major factor in the loss of elasticity of the penis, as those of us with associated weakening of the erection suffer. Does anyone know what effect applying a cream with tropoelastin, a precursor to elastin would do? This company (http://www.dermalastyl.com/) claims to have such a product. Thanks for your comments.
My first thought here is "how do they make it transdermal?" but apparently they have that down, since if its used by the military, one has to assume there must be some science behind it as well as some efficacy (although knowing our government, that assumption could very well be questioned ;). Actually, this is pretty fascinating. It certainly would be harmless enough to try, so, what are you waiting for? - George
Hi Duben
This Dermalastyl looks interesting, but whilst it might smooth out surface wrinkles I have my doubts about it penetrating to the plaque to help with Peyronies Disease. As George says - there's probably no harm in trying it. Interestingly, one of the guys mentioned on the web site is called Dickman - perhaps this is a good omen!
Regards
Percival
PS - it reminds me of a claim made by an old mate of mine for a cream he said he'd invented "to bring lustre to your cluster, and glamour to your rammer" (patent refused)
someone on a german Peyronies Disease-newsgroup reported major improvements of his Peyronies Disease and general penile inflammation after being treated with Mesotherapy. http://en.wikipedia.org/wiki/Mesotherapy
He received "micro-injections" into the penis. the injections consisted of unspecified "low-dosed anti-inflammation and pro-bloodflow medication", plus "procain". the injections went merely below the skin and the number of them was about 30 each session, 5 sessions.
______________
I am aware that injections into the penis are something you absolutely want to avoid and can even be the cause of Peyronies Disease. still, it sounds like a success-story that some people might find interesting.
The link provided did not mention anything about Peyronie's. It did say the following:
"Mesotherapy treatments have been performed throughout Europe, South America, and more recently the United States for over fifty years. However, physicians have been concerned about both the efficacy and safety of mesotherapy, arguing that a lack of scientific study makes mesotherapy a fad with potentially dangerous side effects. "There is simply no data, no science and no information, to my knowledge, that mesotherapy works," according to Rod Rohrich, M.D., Chairman, Dept. of Plastic Surgery, University of Texas Southwestern Medical Center, Dallas. The American Society of Plastic Surgeons issued a position statement not endorsing mesotherapy because to date, there has been no established mechanism of action, demonstrated efficacy, or established safety profile with any of the drugs used in mesotherapy.
The FDA cannot control the use of practitioners injecting various mixtures into patient's bodies because this practice falls under the jurisdiction of state medical boards. Dr. Robin Ashinoff, speaking for the American Academy of Dermatology, says "A simple injection is giving people false hope. Everybody's looking for a quick fix. But there is no quick fix for fat or fat deposits or for cellulite." The American Society for Dermatologic Surgeryinformed its members in February 2005 that "further study is warranted before this technique can be endorsed."
Many dermatologists and plastic surgeons are alarmed about the growing profile of mesotherapy. "No one says exactly what they put into the (syringe)," says Naomi Lawrence, a derma-surgeon at the University of Medicine and Dentistry of New Jersey. "One drug they often use, phosphatidylcholin, is unpredictable and causes extreme inflammation and swelling where injected. It is not a benign drug." USAToday 8/4/2004. It is currently banned in a number of South American countries. Even Brazil, which is less strict than the USA in drug approvals, has banned the drug for these purposes. USAToday 8/4/2004"
Not exactly a ringing endorsement.
If it helped, it was either due to the fact that sometmes "Peyronie's Disease" gets better (the quotes are for Liam), or that the needle did some breaking up of plaque.
Tim
Tim, It sounds to me like "Mesotherapy" is a parallel mode to DMSO in that it is just yet another way to bypass the body's natural layer of protection which is our skin. If that is the case then it would follow that Mesotherapy would carry NEARLY ALL of the risks associated with DMSO, which are not trivial. IN ADDITION, it would carry even more risk. 1) It involves physical trauma which may be exacerbated by a lack of skill on the part of the practitioner who is already demonstrating that he or she is not committed to conservative approaches. 2) It allows far more active ingredients to be transported across the skin barrier in a shorter length of time. And 3) it allows far more potent substances to be used that are only available to medical professionals, and, again, all of this in the hands of a practitioner who is not committed to conservative treatment approaches. This indeed should be equivalent to multiple red flags. - George
Has anyone actually been treated for Peyronies Disease with radiation and what were the results? I'm almost willing to try anything now, except surgery.
Old Man was treated with radiation. A member just posted the details of the treatment he had many years back.
The consensus is that it stops pain, maybe by killing nerves. It can cause ED. It has not been shown to change the deformity. I know of no one that offers it. If you knew you were getting better by 2 degrees a month, would you be happy? If you knew you stopped improving 2 months ago would it impact your decision? If you knew you were slowly getting worse would you stop your current treatment?
I would say these are real important questions and answers. Maybe even important enough to encourage someone to go to the extreme effort of tracking their length, girth, and curve. ;)
With Xiaflex now in serious trials and some success being reported, I wouldn't even consider a risky shot-in-the-dark like radiation.
Nemo,
I would tell you that your dick is likely to fall off, if I didn't think that you'd take it seriously and go out on a ledge.
It seems that your head is telling you more than you are able to synthesize and incorporate into your thinking. I feel confused after reading some of your posts, and I take that to indicate that you are confused (often we end up feeling what another is feeling, if we pay attention to it).
Maybe this is a bit too much information overload for you, Nemo. I again challenge you to do something positive for yourself. For you, I think that might entail reading less about Peyronie's and "getting right" in your head about who you are and what you are. Attention to your spiritual growth and development might yield returns for you - as many of us say, for every problem there is a spiritual solution. Right now, "facts" seem to be doing you wrong.
Tim
Dented,
Welcome to the forum.
I moved your post as Tim suggested.
Please read the "Read This First" section of the forum and don't assume you know the rules or how the forum should be set up. It explains in clear detail, how to post on this forum and why it is designed as it is. https://www.peyroniesforum.net/index.php/board,1.0.html
Hawk
Hi All,
Searching around today, I found this posting wiht quite a strange (in my opionion) cause and treatment for Peyronies Disease. You can find it at http://livingwith.urologychannel.com/peyronies-disease/20080214_4021 (http://livingwith.urologychannel.com/peyronies-disease/20080214_4021)
To summarize, this person (I don't know that they're a doctor, but based on his 'treatment', I suspect that he is) Peyronies Disease is cuased:
QuoteIn my experience ([moderator note: contact information has been removed]) Peyronie's is caused by inhaling carcinogenic chemical fumes that chemically cross-link proteins in the erectile nasal turbinates, biochemically rearranging antigenic determinants called epitopes.
And his treatment:
QuoteWhat to do for a treatment? I have tried hundreds of treatments, and found what works well is repeated frequent vaccination with MMR-II (mumps-measles-rubella) shots. ... Dosage: start with one shot per month, then every two weeks, then once a week, then twice a week, then daily.
ps. The daily shot regimen is what makes me suggest this person is a doctor...who else would have access to that much vaccine and syringes?
I'd never heard of anything like this before, so I thought I'd throw it out to the forum for discussion.
Steve
https://www.peyroniesforum.net/index.php/topic,673.0.html
::) Oops (that's an embarrased grin).
I guess you can delete my post too...I thought it sounded to strange to have much merit, but thought it could start some discussion. Now I see that any further discussion is un-necessary.
Steve
I'm smiling, but feeling unsettled. How often do we get creepy stuff like this? I was getting ready to dial my daughter's pediatrician. Thanks for looking out for us Hawk.
AR
Actually we are a community and we have all done an excellent job in policing such posts. It is rare to find a forum on any topic that allows the freedom that we allow, and yet avoids the flaming, attacks, insults, religious/political arguments, and off topic hijacking of the forum.
While I was knocked over by the post, it was another member that took the time to Google this member name and found other examples of his internet activity. Even then I avoinded deleting the post because I am fanatical about avoiding censorship. I did move it to Off Topic until the author can defend it. He posted and has never logged back on the forum.
Fortunately, the members have all done a great job of keeping this the best Peyronies Disease forum that ever existed.
I may move these posts to the the same topic in a day or two.
I am 37 years old and was just diagnosed with Peyronies Disease about 3 or 4 months ago. I noticed a curving of the penis about 4 months ago. The curve up quickly progressed within about 3 or 4 weeks. I do not have any pain with erections nor do I lose my erections. I started taking L-Arginine because I heard that can help. I made my erections more intense, which I am not complaining about but I recently stopped because I started to break out with cold sores. I also heard ultrasound or proteolytic enzymes may be helpful. Can anyone give me some advice on what may be helpful for someone with such a new condition. I do feel the scar tissue near the head of my penis and it is tender when I push down on it. Any advice would be appreciated.
Welcome, PAR. There are a variety of treatments guys on this board are using. You've hit on one - L-Arginine. There is a popular "cocktail" being used by leading Peyronie's doctors right now consisting of L-Arginine, a drug called Pentoxifilline (Pentox), and Viagra. The three are supposed to work in combo to attack fibrosis and get good blood flow into the penis to achieve this. Some of us are also taking Vitamin E (the classic Peyronies Disease standby), Acetyl L Carnitine and Propionyl L Carnitine - all these supplements are easily purchased online.
There are also practitioners of VED therapy (Vacuum Erection Device), and traction, which involves mechanically stretching the penis. Search either of these terms and you'll find plenty.
The bottom line is there's no magical cure, sadly. Many doctors don't know much about Peyronies Disease, and the ones that do pretty much recommend some or all of what I've listed above. Right now the Pentox seems promising, but so have other drugs in the past - I wish I could be more hopeful. If you're getting good erections and no pain, consider yourself lucky and do a little research to see what you might want to try to maintain or even better your condition - it does happen, so there's always hope.
Good luck brother,
Nemo
PAR,
I second what Nemo wrote. No magic bullets, but some promising areas that we can work on. I am focusing on supplements that are anti-oxidants and likely to suppress TGF Beta-1.
And, hey Nemo? Great advice. I wonder if you are finding that when you reach out to help others if your own pain is eased just a little bit. I know that for me this is true. Getting out of my own head is good for me.
Tim
Thanks for the info. Does anyone know if the problem continues to progress. Since I have only had it for 4 months, should I expect it to get worse. It seems like it curved quickly in the first 4 weeks or so. For the past 2.5 to 3 months it has not changed any. Any ideas what to do about the cold sore outbreaks with the arginine. I want to stay away from taking viagra or drugs if possible. Anyone try combining Lysine to help combat the cold sores and does that work. How about Ultrasound. I have heard that may be helpful. Has anyone tried that or gotten good results with it.
PAR
PAR, It is hard to top Nemo's suggestions, he did a really great job. But one thing I would tell you is that some of us here have noticed that dietary sugar, and stuff that raises blood sugar levels like refined carbs, tends to provoke flare ups. You might want to be cautious about that also. - George
PAR, I know first hand that no one can predict what Peyronie's will do.
If I were you, I think I'd look at it like this: you had noticeable bending in the first four weeks, very quickly, and now you've gone 3 months without change. Every day you go that you don't see change for the worse is one day closer to feeling comfortable that you're stable. Your inflamation process clearly had the capability of bending you, as it did, so the fact that it's taken three months off is a good sign in my book. That's not to say it might not change on you yet, it may, but likewise, if it moves again it may be for the better.
Again, good luck,
Nemo
Thanks guys, I appreciate all the advice. I do have issues with blood sugar so I will take that into account and I will look into the arginine and lysine. Has anyone help about proteolytic enzymes, fish oil and ultrasound and their possible benefits?
Does anyone have any information on the use of Low Level Laser Technology to treat Peyronie's?
Par,
Several of us have experience with taking different proteolytic enzymes marketed under different brands names. The problem is that none of us that I know of have any good experience taking them. My personal opinion is that there are far more cost effective things to spend money on unless the goal is just to spend lots of money. If that is the qoal, proteolytic enzymes are the perfect solution ;)
PAR, The whole proteolytic approach is a waste of time and money in my view. If you KNOW you have a blood sugar issue, you should spend your time, money, and effort dealing with that as a priority. It will not only benefit you in terms of Peyronies, but also in terms of general health. Researchers are now acknowledging that even NON-DIABETIC sugar levels can damage body tissue (http://www.healthday.com/Article.asp?AID=613110). There is much evidence to suggest that Peyronies and other similar diseases are directly related to faulty sugar metabolism. I would highly recommend to you three books: YOU The Owners Manual, YOU on a Diet, and YOU Staying Young, all by Mehmet Oz, MD and Michael Roizen, MD. These books can help you to understand the underlying processes involved and how to reverse them. While there are lots of strategies that WILL help you with Peyronies from the VED to Pentox, getting your blood sugar WAY down would likely also do wonders for you and greatly benefit you in terms of Peyronies. - George
PAR
Agree with George and Hawk. Avoid the enzymatic therapy - it doesn't work (well enough) to use.
Tim
I am interested in trying acupuncture with peyronie's. I've used acupuncture for various ailments such as Plantar Fascia and stiff necks. For some ailments it seems to work for me, for others it does not. I saw that Herazy offered an acupuncture plan, but it seemed like it cost 4 or 5 hundred dollars. Sounds like a lot for an alternative plan??? Has anyone tried this acupuncture plan that Herazy sells?
I just started a high ph approach for peyronie's. I like to try a few "harmless" approaches which intuitively appeal to me along with ones that make more logical sense.
This approach involves drinking water with a higher ph and chlorophyll and a kind of baking soda. The idea is to maintain a 7.2 to 8 ph in the tissues which is supposed to be ideal for healing. It involves measuring the ph of your morning urine and saliva. I was quite pleased that following the instructions, my morning urine tested out at 7 or 7.5 when it had previously been at 5.
I'm mentioning this approach in case there are others who have tried it and have feedback.
Gnosis,
sounds interesting..you mean to drink this water during the whole day or only a few times per day? How is this kind of water prepared and stored?
Maybe you should tell us something about the other cases that have benefited from it. Thanks :)
R3
Hi - Im very new to this and got diagnosed with Peyronies Disease 2 months ago - I have been taking - lets see now:
1) Neprinol
2) Natto
3) Serralone
4) Acetyl L-Carnitine
5) Quercetin Bromelain Complec
6) Vitamin E plus C
7) EDTA chelation therapy
8 ) DHSO with Copper serum
and finally I went to my uro in Sydney who prescribed me Trental 400.
I feel like I am finally seeing an improvement - I am religiously taking all these supplements and applying the oils at night for say 2 hours plus I apply it in the morning and have have it on me during the day - theres really not an issue with this - its fine and clean and not messy - it feels like my lump is finally going down and the pain is definitely reducing.
I am actually flying from Sydney Australia to San Fran to meet with apparerntly the best Uro there so hope fully there will be some more guidance.
One question though, can anyone please tell me honestly if they have had any success with any products from the PDI website ( e.g Neprinol, Serralone etc) - am I wasting my money??
If some one who has been using these products could get back to me that would be great!!
cheers
I can certainly give my opinion:
1) Neprinol - Useless for Peyronies :(
2) Natto - Useless for Peyronies :(
3) Serralone - Useless for Peyronies :(
4) Acetyl L-Carnitine - Effective for Peyronies confirmed by at least one study :)
5) Quercetin Bromelain Complec - Likely effective for Peyronies :)
6) Vitamin E plus C - Likely effective for Peyronies :)
7) EDTA chelation therapy - Possibly effective for Peyronies (EDTA is an interesting substance with some strange capabilities) ???
8 ) DHSO with Copper serum - Don't know about this one ???
and finally I went to my uro in Sydney who prescribed me Trental 400. - Effective for Peyronies confirmed by multiple studies on various forms of fibrosis ;D
Hope that is helpful. - George
George,
I laugh ;D and then throw something >:(
It makes me crazy to be told that researchers conclusions do not make a thing fact by individuals that take the position that NO research is superior evidence to some research.
It is like saying researchers conclude the dark side of the moon is much the same compesition as the light side. They cannot be sure. Therefore it is made of green cheese!
If you have nothing more than "could be therefore must be" then I cannot argure your point.
Well, I could....
I posted some comments yesterday and I need to know if there is any feedback from people using Neprinol or Serralone or Nattokinase - I got diagnosed with Peyronies Disease 2 months ago and have speant allot of money importing this product from the US to Australia - is it worth it ? and is there any other topical treatments I can use....please help me!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Iceman, I recall a couple guys on the forum mentioned using Neprinol, but I don't remeber anyone feeling like it did much to help.
As to topical treatments, I'm afraid conventional wisdom is that they don't penetrate enough to do any good. Topical Verapamil was the great hope a few years ago, but it never proved to be anything more than a high priced waste of time for most.
Verapamil delivery through the use of an Iontophoresis device does seem to be more promising, however, but these machines run you about $1,000 (available from a company called Physion). I'm about to start trying this myself this week.
Good luck,
Nemo
thanks for getting back to me - what about DMSO and copper serum CP - this was recommended on a website called the Peyronies Disease Institute - the said that the DMSO work the copper into the skin and penetrates deep down - have you heard of this???????
sorry for posting my messgae twice as I am unsure of this forum - all I want to know is some feedback on:
1) DMSO + Copper Serum ( part of Thackers Formula)
2) Trental 400 - has anyone used this and has anyone had a positive effect
3) why are there so many positive reports for Thackers formula yet you guys are so negative about these types of treatments..
many many thx
DMSO was an integral part of Thacker's Formula. Several here tried it, some (myself included) with mild benifits, but nothing too impressive. As to copper - I've never heard of that being used, but it seems like at one time or another, guys with Peyronies Disease will try any and everything.
Now, Trental is also known as Pentoxifilline (Pentox), which is a prescription drug that is being looked to with great hope by leading Peyronies Disease doctors (and several of us here). That one's definitely worth trying.
Nemo
Does anyone know about this stuff being used for treating Peyronies Disease: recombinant human superoxide-desmutase?
I saw it in a PDF document titled "Male Sexual Function and its Disorders." I found it at this site:
http://edrv.endojournals.org/
Quote from: Iceman on March 11, 2008, 09:34:41 PM
sorry for posting my messgae twice as I am unsure of this forum - all I want to know is some feedback on:
1) DMSO + Copper Serum ( part of Thackers Formula)
2) Trental 400 - has anyone used this and has anyone had a positive effect
3) why are there so many positive reports for Thackers formula yet you guys are so negative about these types of treatments..
many many thx
Copper Serum was never part of the original Thackers Formula. It was only DMSO, apple cider vinegar and castor oil, unless you meant Copper Serum
added to Thackers.
A WHOLE bunch of guys on this forum mixed Thackers and applied it every day in the past, including myself. It successfully turned some guys skin red and made our breath stink seconds after applying it. Other than being a mess to concoct (speaking for myself here) it did nothing for Peyronies. There are horse people who apply DMSO to horses legs for certain ailments and claim it works, but I can't talk to the horse and verify. If Thackers actually worked as some posters in other boards claim, the news would have spread like wildfire and actual case studies would have proven it. So far, I've seen nothing like this, only some random posts and some websites that claim victory with Thackers. DMSO will absorb through the skin and get into your system with lightning speed, as shown by garlic-like breath mere seconds after application. I tossed the DMSO, put the vinegar on salads and used the castor oil in model airplane fuel, and for me personally, those were the best uses for the ingredients. So for me, a former user of Thackers, it is a whimsical formula that needs to be put to rest once and for all as a Peyronies treatment. I have not read nor seen any evidence that someones Peyronies was improved by Thackers as a sole treatment. To me, reading a post or article that claims success with Thackers is not evidence.
I made a post a few months ago regarding a trip I had to a new Urologist. He prescribed to me a gel from a local natural pharmacy (the same place I get my Arginine and full-spectrum e) that was called only "peyronie's gel" and is said to include only topical ACL-Carntinine and EDTA (which is a chelating agent).
I recently lost my health insurance, so haven't been back to the doctor since he first prescribed this to me, though I contacted him over the phone to enquire how it works. He said that the function of the gel was to soften the plaques, the EDTA specifically acting as a calcium-channel blocker. I'm not sure how that plays a role (as I'm unsure as to how calcium affects fibrosis, but I'm not a doctor...) but whatever the cause, I'm reporting how it's going.
I was told that the treatment takes 6-9 months, and it's currently month 3. I've been somewhat lax from time to time, so it's really creeping on 4 months but I'm still on my 3rd month's supply. You have to apply 5 cc's twice a day, and given that the pharmacist advised I "rub it in good" I'm generally trying to acheive at least a moderate erection - "half-mast" - before applying. Not always successful, as sometimes I have to apply it in my workplace's public bathroom!
It's not a silver bullet, by any means...and I think over the course of the past few months the disease itself has progressed...but I am confident that this gel had a beneficial effect on curbing the progression of the curve. Additionally, I have been applying the gel most frequently and in higher amounts on one large plaque on the left side of my wanger. It seems as if that plaque, while not diminishing in size, has grown mildly softer than I remember. There is no perceptible decrease in bend yet, but I am heartened by what I beleive to be progress. I can't be sure if it's A) The more longterm use of L-Arginine, B) The fact that I am prompting more erections simply by "preparing" to apply the gel, or C) Have used, very infrequently, Viagra supplements when I feel a bout of inflammation coming on. I beleive that when I take Vitamin E, however, it seems to exacerbate the curve noticably...so I have stopped taking it, thinking perhaps it incites whatever faulty collagen process caused my fibrosis in the first place.
Nothing more to report, other than what I'm going through. I'm hoping that in three more months treatment I will be able to officially confirm or deny if this has changed the rigidity of my plaque. If you guys have appointments with knowledgable uros, please ask about the mix -- I can't find much about it on the net, short of using EDTA as angina medication.
Ocelot,
When you say that the doctor "prescribed" Peyronie's Gel did he give you a legal prescription, or was it something that you could buy from the pharmacist without the prescription? I also want to know what you mean when you say it has helped even as your Peyronies Disease progressed.
Fellas, does anyone else have any experience with Peyronie's Gel, and if so, what were the results?
Yes, Hawk, every time I see that I break out in a cold sweat since I was using a rice sock that was well above that temperature. I have no idea if I did any damage, but the thought is frightening.
Nemo
Yeah, that's the thing ... I always used the rice sock on my neck at the same temperature, and when I used it "downstairs," it never even remotely felt painful or uncomfortable - in fact, it felt pretty good. I never had any sign of skin irritation or anything that would cause me alarm. Then, when I read that study talking about damage at just a little over 100 degrees ... well, let's just say it's caused some frightening thoughts to run through my mind.
Tissue is tissue and if the rice sock didn't leave you with permanent damage in the neck it is unlikely it would do permanent damage any where else. I think where the problem really becomes complex is when you are using something like microwaves that can "trick" the senses and also when you are moving into a clinical environment where a patient might "tolerate" pain thinking that the doctor "knows what he/she is doing". I really don't think you have too much to worry about other than the fact that it is unlikely to be very effective. - George
hi guys - now that ive been shot down in flames and will toss out the:
Neprinol, DMSO + Copper serum, Natto + SErralone - is there anything that I can buy or use ( I am currently on Trental 400 and EDTA chelation drops - which taste terrible) which may help me......I often read that Peyronies Disease treatment is like the scales of justice; you have to keep adding weights whatever they maybe to the other side to tip the scales in your favour - so is there anything that can be recommended? - BTW - not too keen on VED stuff.
Again thx
You should post this on the Oral Treatments forum, but I'll tell you that Acetyl L Carnitine, Propionyl L Carnitine, and L-Arginine are very popular supplements among many on the forum. I'm taking all three.
Nemo
Bodoo2u:
It was a prescription. I knew of the natural pharmacy in town, but he explicitly asked me if I knew where it was at even though it was about 30 minutes away from his office. I assume this is because I would not be able to find a pharmacist who would mix this gel for me anywhere else. I assume I needed the Rx for it, as it was written on a slip.
The pharmacist said to me the first time I filled the Rx that he'd had other customers who used this and were very happy with their results. The pharmacist was being vague about any details, and I was not really compelled to ask a lot of detailed questions - because the shop was staffed with women and I am in my early 20's (not that the age matters in the humiliation this disease causes, but when a cute young girl is next to the pharmacist at the counter, I'm not talking about my fibrotic penis).
As far as "helped" -- the peyronie's has progressed. I have not curved more, but I can feel some small amounts of hardening. I went to the uro first because the disease was getting worse - in the first month of application I noticed more hardened scars but I doubt it was because of the gel itself and more because of the active phase of the disease which caused me to seek out this uro in the first place.
Since using it I've developed a new "piano wire" scar, small and very thin, but it wasn't on the area I was applying the gel to (at that point). My curve has not resolved to any extent that I can see (it's not a large curve, about 20 degrees) but where I feel the gel is helping me is in the tactile feel of the largest plaque. It simply feels softer. We're not talking skin soft...but it just doesn't feel as rigid as it used to. It has not diminished in size or changed in shape. But it's doing SOMETHING. Which is why I posted the update.
Give me a few more months to finish the treatment, since my reports are completely subjective, and I can give you a better idea of what this does (if anything). I just wanted to remain active because I feel like I owe this board a lot, even if I can't deliver extremely promising news.
Thanks a lot Ocelot. Do you have the name and location of that natural pharmacist. I sure would love to ge tmy hands on a tube of that gel.
Fellas, I see that no one has responded to my post on recombinant human SOD. I read a few posts on the subject from last year, but they didn't tell me where I can get the stuff, if it's available at all. Can someone let me know something?
It's the Lionville Natural Pharmacy in Lionville, Pennsylvania. My urologist who prescribed it was a Dr. James Bollinger, he operates out of Paoli, PA.
Paoli is a town that's so close to Malvern, PA, with both places being so built up with subruban sprawl that around here the area is frequently referred to as "Paoli/Malvern". Malvern, for maybe the one or two people who aren't eagerly waiting for more news on it, is where Auxilium has their headquarters. This is why I sought out the good doctor to begin with. He's actually a great guy, too - took a call from me at 9pm on a Friday on his personal time to reassure me when I was panicked that my peyronie's was progressing, and offered to step up to intralesional injections of the gel if I felt the conservative topical treatment wasn't working.
Dr. Bollinger wasn't familiar with Auxilium when I asked him, however (even though he had literature for their testosterone gel in his waiting room!) and he disputed the notion that a VED would help me, suggesting it had more potential to reinjure me than to help. He did give me some free viagra samples, however, so it's clear that he takes stock in that treatment. I give you this only to add a grain of salt - obviously he's not as cutting-edge as all of that, since even Levine acknowledges the VED.
And again, I reiterate for those PMing me: The gel comes in 10cc tubes that look like syringes without the needles. The syringes come in a bag. The slip on the bag has the normal info (my name, pharmacy, doctor, etc.) but all it says about the product is this, exactly: PEYRONIE'S GEL (EDTA, ACETYL-L-CARN) 80M.
This is all the info I have, really. I don't want to get people's hope up, but I hope what I have conveyed helps in some way.
Hi Ocelot,
I see Dr. Metro in Philadelphia. He prescribed me colchichine after my injury which may have helped prevent some of the collagen buildup. He specializes in traumatic penile reconstruction and seems to know a lot about Peyronies.
George, check this out. I think you will enjoy these links under "Defining Peyronies Disease". While this in not the reference I was looking for, it is interesting.
Quote from: Hawk on March 15, 2008, 08:46:25 AM
Perturbation of cell cycle regulators in Peyronie's diseaseAuteur(s) / Author(s)
MULHALL J. P. (1) ; BRANCH J. (1) ; LUBRANO T. (1) ; SHANKEY T. V. (1) ;
The p53 protein has been shown to be an important cell cycle regulator and pro-apoptotic factor. Aberrant p53 function leading to cell immortalization and proliferation has been implicated in several human malignancies. We hypothesized that abnormal p53 function may explain the high proliferative ability of fibroblasts derived from Peyronie's plaques. This study was undertaken to study the presence and function of p53 and its downstream elements (p21, mdm-2) in Peyronie's disease cell cultures. ...This is highly suggestive of an aberration of the p53 pathway in plaque-derived fibroblasts. Peyronie's plaque-derived fibroblasts demonstrated stabilization and defunctionalization of p53 protein combined with appropriate responses of its transcriptional elements. These findings may explain the high cell proliferation rates in these cells and suggests a role for perturbation of the p53 pathway in the pathogenesis of Peyronie's disease
I only got one hit on the site Extracorporeal shockwave therapy when I searched for Extracorporeal Shockwave Therapy. Does anyone have an opinion on it? I have been reading about it on the Web, and so far I have not read about any side affects. I will, however, continue to read up on it.
I have done research and have read the studies. It may help. Unfortunately the one place in North America that I can find that would do it is temporaily out of service. Its the place in Toronto Canada. The main Doctor there is going off to do other things and they haven't replaced him. >:(
Excuse me guys, for jumping in here with a non sequitur, but my wife and I were out working with our honey bee hives the other day when, after getting stung a few times, I casually mentioned, .."Hey, what if I had one of these girls sting me on my plaque..?" Now I've read about bee-venom-therapy, but know little about it, or how it might work, but for a second I thought, what the Hey!... VED's?, Traction?, Verapamine injections?... Bee-venom-therapy...? Yes, I know what you're thinking, but after you've been stung hundreds of times by honey bees, their sting is not such a big deal, albeit, the arm, hand, or face is not as tender as some parts of the anatomy...but what do you guys think? Tim, George..? Could the reaction to bee venom, in some "molecular-way", "shock" our plaque, cause beneficial "blood flow", or something else positive...? Anything positive..?
Anyone up on this..?
Totally sincerely, AR
Anyone up on this..?
Oh, I get it - you got this great diea but you want to try it on us first??
Tim
Actually, the idea is very intriguing and some show I watched a long time ago about bee venom therapy suggested it was quite beneficial. I also saw one on a snake handler who had been bitten and our jaws dropped when we learned he was 80 - he looked about 50. It suggested a beneficial outcome from surviving a rattler attack. However, that is one experiment on the penis I would definietly pass on!
Tim
Thanks Guys: I knew I should've posted this in the "On the Light Side" thread. :D
Yes, I think I saw those same programs... and that snake-handler guy's fingers were very, ah.., "bent" and "crooked", so I'd pass on the snake-venom approach... but bee-venom...? Maybe I'll ask my Uro his opinion first. :D
But seriously, if I was sure it wouldn't do more damage, I'd give it a try! I'll do some internet research.
If you never hear from me again, it's because it either killed me, or something tragic happened and I'm too embarrassed to return.
:) AR
Yeah, they only CALL it a trouser snake - there's no relation! Nor should you introduce the two!
But bee venom therapy is crazy - but sometime's crazy is what it takes. I know that they use it on arthritics, and MS patients - there is some measure of scarring involved in both diseases. It's supposed to release toxins that stimulate the bodies healing process - it's up for grabs if this would promote healing or fibrosis, since it's a messed up healing process that's causing the damn thing in the first place...
But if people are reporting medical injections via syringe giving them plaque nodules, I wonder how much damage a bee stinger would do - don't they leave them behind in what they sting!? :/
Why, then, are some people hailing Xiaflex as the next big drug to combat Peyronies Disease when it's an injectable? Wouldn't that, like verapamil and other injections, cause more plaque then it helps?
headinthesky, I'm not aware of any scientific basis for what you're saying about "resonant frequencies". Is this your own thinking?
ocelot, the premise of verapamil treatment is that it promotes local production of collagenase, an enzyme that dissolves collgagen. Xiaflex on the other hand actually is collagenase, so it's expected to be much more effective than verapamil.
Quote from: j on May 13, 2008, 06:29:12 PM
headinthesky, I'm not aware of any scientific basis for what you're saying about "resonant frequencies". Is this your own thinking?
No, not my own thinking. I'm doing my Masters in Biomedicine.
That's how basic waves work. Think of an opera singer with a high high tone, you know the example of her breaking glass. The waves hit the exact frequency (think of frequency as energy) that the atoms require to move. It's a concept in physics.
Check out: http://www.zyra.org.uk/microw.htm
As they explain, the frequency for water is 2450 Megahertz, which causes water unbond, and release energy in the forms of heat.
The aim of ultrasonic therapy is that above. Except applying it to plaque and fibrotic tissue is something that needs to be researched. They use it to break kidney stones (shock wave lithotripsy), which uses ultrasound waves to do it. Soundwaves operate in a similar fashion to light rays (like the opera singer).
Not all plaque is the same. I know of no data that says sterols are in the calcified plaque of Peyronies. It is different than what forms on the intima of small arteries in cardiovascular disease.
But the point about resonant frequencies is well taken none the less.
Tim
Quote from: Tim468 on May 14, 2008, 12:21:33 AM
Not all plaque is the same. I know of no data that says sterols are in the calcified plaque of Peyronies. It is different than what forms on the intima of small arteries in cardiovascular disease.
But the point about resonant frequencies is well taken none the less.
Tim
You're right, no plaque is the same, it varies in the composition, but it's the same "ingredients" to a point. Cholesterol is pretty "sticky". Cholesterol is a sterol.
And I would think injecting yourself with bee venom would cause a bigger problem... because of the inflammation?
We know that Trauma is a key factor in initiating Peyronies. That makes me more than a little suspicious of techniques that employ trauma in there delivery. Both needles used to administer things like Verapamil or Collagenase and ultrasound or other waveforms used to attack plaque are literally inflicting trauma in the process. This sounds to me like it could turn into some sort of chronic treatment scheme. Sorry to inject skepticism here, but I can't help but wondering if we are not barking up the wrong tree with these approaches. - George
Some one posted a copy of a scientific paper on this subject a few weeks back (forget who/which thread), now it's hit main stream with an article in the May 19 issue of Newsweek. Go to .com and find it under "Health" titled "War on Wounds". The first half is war-crap related, but the later half is interesting.
AR
It's headed up by Anthony Attala and he has created an artificial penis in an animal that works (the boy rabbits got the little girl rabbits pregnant). It's cool stuff.
Tim
I didn't see a thread for this topic, so thought I would start one. I found an artical on Low level laser therapy here:
http://adsabs.harvard.edu/abs/1995SPIE.2395..108J (http://adsabs.harvard.edu/abs/1995SPIE.2395..108J)
Would be interested if anyone has any experience with this.
Post moved from it's own topic to this more appropriate thread.
Angus
That abstract, which did not report any results, came out 13 years ago. Since it went no where, I assume it had negative results. On the web, you can find claims (oddly enough, by makers of lasers!) that "63%" of men were fixed by laser therapy.
I think this could properly go under the term "Alternative Therapies".
Tim
What is going on with this website?
http://www.peyronies-disease-help.com/
Is this just a crock? I found the book he sells on his website for 44 for 15 on amazon.com and purchased it and find it intriguing. Has anyone tried the methods or products that are sold here or know anybody that has?
I am just biding my time till the 18th, when I can finally see Dr. Cully Carson at UNC Hospital in Chapel Hill. As those who have followed me have seen, I went to two urologists in the Charlotte area, neither of which were helpful. They both insisted there was nothing wrong with me and became upset.
However, in looking I have a clear ridge going from the base of my penis to near the top. I also have various bumps and enlarged-looking veins on each side of my penis and what feels to be a mass on the underside. I have hourglass indentations that come and go depending on blood flow throughout the day. I have a very curved to the left penis. It also curves down. Everything hurts ALL the time where I know the mass on the top of my penis starts. It hurts me to even do anything at all. I hate wearing clothing as it rubs against the "scar" on my penis and hurts. The only way I have ever been able to sleep is on my stomach but this is now impossible as it hurts too much to put pressure on my penis. So I can never sleep more than about 30 minutes to 1 hour a night. I also now sleep with nothing on as my underwear would hurt my penis. Unfortunately, now I have 2-3 wet dreams a week and they ruin my sheets. I guess the covers are brushing my penis or something. When I wake up and am ejaculating in my sheets my dick doesn't appear very hard. Even armed with all this knowledge, my urologist told me that I was looking to much into it and that I was FINE. No Peyronie's, nothing wrong. Preposterous. I am slowly going COMPLETELY AND TOTALLY INSANE. I look at myself in the mirror and am so disgusted that I want to throw up. I got my one urologist to reluctantly transfer me to the urologist I am now waiting to see and cancelled my appointment with my other one. He had most recently told me that I needed to masterbate and that would fix things. He left a voice-mail for me sayin that he was glad I was better now!! He had assured me before that I would be better and told me to cancel my appointment with him if he was. Ha! Better!!!????!!!!
Every day I check my penis and new things are happening. New cord looking things, worse curve, more pain, and what appear to be harder lumps. For me to be told there is nothing wrong with me and for this to happen drives me crazy. The only time I do not beg and plead to die and make the pain stop is when I am with my girlfriend and she is hugging me. I get a curved and very painful erection at that point in time but I feel somewhat at peace because I am so much in love with her that I just don't give a crap that I feel horrible. When I look into her eyes, everything feels better for a minute and sometimes when I'm talking to her I even forget the pain momentarily and think that everything is okay.
But it's not. When I start driving away from her house or lay in bed at night unable to sleep and just waiting to have to wash my sheets in the morning the dread sets in. I would do anything to make the pain stop.
alcohen -
relax - the pain will subside over time - i was in so much pain for months but its going away now day by day - be strong and try not to think about it - its hard I know but you must try to shift your attention to something else - get on PENTOX!!! - your uro will supply it....
try ALC as well - these have helped me reduce the pain and also get on a VED.....ALSO this website you have the link to is I find a bit of a con - its promoting stuff thats really not going to do you much good - I bought a whole lot of that crap and for nothing!!!
just get the pentox and youll find it will help you over time......
I heard about a "Peyronie's Club" which approached a well know body worker and all 50 of them went to him for treatment. I heard that 40 got better. I'm trying to track down if anyone knows about such a club or about such bodyworker or about direct manual efforts to soften plaque.
gnosis
So, does he club your penis?? :P
What does he do? Sounds vague - too vague to even do a google search.
Tim
Gentlemen -
I'm very impressed with this website! Diagnosed 16 months ago, I received no encouragement by my urologist to try any particular treatment, and have seen him only the one time.
I recently spoke with an Asian-medicine pain-management specialist who instantly recommended a powder provided by the Chinese to the Viet Cong during the Vietnam war (apparently the larger unvieling to the western world of the concoction) for stopping bleeding and speeding healing (without scarring): YunNam BaiYao. Produced primarily from ginseng and rhisome from the YunNan province, its efficacy is apparently so profound that soldiers suffering bullet wounds could return to battle the next day(!)(?) and the widow of the formulator sold it (was forced to?) to the Chinese government, who now solely control its production. The several blendings of only some parts of the many ingredients are said to take place in disparate locales, with the final mixing performed by individuals in the dark about the origins of any of the minor ingredients. (This stuff is surrounded by legends, I guess. The one copy of the entire recipe is said to be in the hands of the Chinese Army.) It is known as "White Powder." She sells it in blister packs, cheap.
What have you heard about it? Any Peyronnies-related results? Is it something worthy of more investigation?
I am assuming that it is something topical? I have certainly never heard of such a thing. From what I have heard, some people have had success though how much is hard to measure through the use of alternative medicine such as what you are describing. The goal of any of that stuff is to reduce inflammation. Anyone else have thoughts on this? If it is cheap, then that is good. I definitely would not spend a fortune on something like that... But being cheap it could be interesting to try. I would be skeptical about its bullet-healing abilities though..
The white powder has all the properties of fraud written all over it.
Nevertheless, we have always eagerly listened to reports from those who try such stuff! Usually, the reports are negative.
Tim
I watched a you-tube type video of a speech by a Chinese scientist yesterday. They say the stuff has a bright future - they have clinical trial results all over for injury resolution, but want to do more scientific laboratory testing. The asian healer with whom I spoke told me straight-faced stories about this emergency kit staple that is in the pack of every Chinese soldier. There are herbal astringents in this stuff, too, I think. A google search will inform you better than I can about Yun Nam Bai Yao.
New to the site, I haven't read much of the great volume of posts from what appear to be thoughtful writers, but I haven't run across mention at all of Eastern treatments for Peyronnie's. I've got an email into that URO I saw 16 months ago. Is there an Eastern practitioner who any posters have sat down with? To any positive avail?
lessj -
i think i will now go and join the chinese army to see if i can get some of this stuff :):)
If you found the information on internet it must be true! No one would B.S. you on the net!
Lessj,
While there is often a lack of knowledge in the medical community, or a lack of consolidating all available information. I think there are VERY, VERY, FEW if any "secrets" in medicine. Researchers are always eager to take credit for true break-throughs and to demonstrate their genius by objective clinical trials. Most of the secrets from China revolve around lead paint on children's toys, cancer rates and pollution exceeding that of any nation, and the true ages of their Olympic athletes. Actually that does not begin to scratch the surface of their secrets but there have been NO demonstrated secrets in medicine.
I kind of agree with the emerging consensus here. Additionally, I suspect that if this REALLY WAS a secret of the Chinese Army, what with there level of paranoia and intrusive behavior, it simply wouldn't be out there kicking around on the Internet like this. But this is more like secret CIA knowledge of UFO's and the corpse of BigFoot in the freezer somewhere in Georgia. The facts behind the phenomenon are always magically just a bit out of reach. And all of the attempts to pin them down eventually lead down rabbit trails. So I think we have a choice of wasting our time chasing these things OR pursuing things that are known to be helpful, even if only slightly. Personally, I we like to try for a foot and gain an inch that try to chase down a mile and end up going no where. But, to each his own. - George
I have looked at many "Eastern" remedies, and tried a few - though I am not certain I posted about all of them here. That includes Wogonin (tested by Dr. Lue!), Maitake Mushroom, and various "tonic" such as Korean Red Ginseng (for ED) and that Malaysian herb that stimulates testosterone production (blocking on the name). None helped me personally and I tried them all.
However, a lot of research needs to be done on such remedies, as trial and error has led to many developments in herbal medicine that we do not understand, yet work.
Tim
I think the best chance of combating this with "eastern" medicine is through Ayurveda. If you go to this website for the great PBS documentary show "Frontline"
http://www.pbs.org/wgbh/pages/frontline/sickaroundtheworld/view/main.html
then click on one of the parts for this documentary, you will see a link on the side for "India: A Second Opinion". I can't remember exactly, but I think you can just watch the second part of this video.
The guy in the video had a problem that he could not move his shoulder, and after I think 2 weeks he had more movement than ever since he got the condition. They said he should stay 10 days longer, and he would keep getting better.
Auxillium is also being tested for Frozen Shoulder Syndrome, so it seems plausible to me, that something could be done for Peyronie's people in India, but who has 3-4 weeks they can take off for an Ayurveda vacation in India? Not exactly covered by insurance companies.
But if someone on here is retired and has the money, it'd be interesting to see how they fared.
Quote from: ox bow on November 05, 2008, 11:06:35 PM
I continue to take Pentoxifylli 400mg. twice a day and use hot water soakings. I believe that peyronies is, in my case, not unlike a sport injury. It has taken a few years for me to have recovered this far. I want to thank all of you for your help and advice.
I just want to encourage everyone to keep up your hope. It may take time, but I know that positive results are possible. Thanks for this site and the hope it brings.
hot water soakings?
how would you go about doing that?
Hi All
I joined this forum 5 months before but i lost my id and my mail id password also
I have again joined this forum with new id.
I have Peyronies Disease for 5 years. 3 years back I underwent surgery and again I got back Peyronies Disease.
I have read some books of AYURVEDA (indian medicine system) which basically classifies human body into PITTA body(Fire), KABHA body(Water), VADA body (Air). In any human body all the three are existing. (and one will be slightly higher in content than the other two. When one element is extremely high then that type of diseases will affect that human body. And the doctor will give medicine to pacify (reduce) that element and that disease will disappear. If all the three are balanced then he/she is normal.
Based on this philosophy and BASED ON THE SYMPTOMS I HAVE when I diagnose I feel that Peyronies Disease is because of more of fire content or heat. If you have balanced heat then all the systems (top to bottom) will work fine. If it is overperforming then you have diseases.
These are the symptoms which I had in the last 10 years. I was thinking these are normal. Do all the Peyronies Disease people have these symptoms.?
Please keep in mind Peyronies Disease is opposite of cancer. Cancer is due to underperformance. Peyronies Disease is due to overperformance.
1. These people have a strong metabolism, good digestion and resulting strong appetites. Very strong metabolism is not good as it causes diseases.(over performance)
2. Dandruff (heat body generates more dandruff), tendency toward baldness or thinning hair
3. Medium physique
4. Sharp mind, good concentration powers, very analytical
5. Orderly, systematic
6. Pittas frequently become irritated and angry
7. very very less sports activities because it generates heat and they will be tired very easily
8. These guys are sharp and analytical.
9. sarcastic, cutting speech
10. if you go thro websites you will see more symptoms listed.
These are the characteristics of FIRE body (fire). You may argue that all have good digestive system. Answer is No. Those who gets cold frequently during winter, don't have this pitta perfect. They are more of Kabha (water content)
How this is happening? Source is food only. All of you know certain food has 'heat' and certain has 'coolness'.
Here is one ayurveda website which lists out them.
http://www.ayurvedic-cooking.com/foodcomponent.asp
When pitta body eats food with that has more fire content – more and more heat is generated and it causes diseases. For other body it will not affect.
I started following strict diet 1 month ago...I expect that something good will happen. Honestly I am telling you I had dandruff problem for the last 7 years...(all kinds of shampoos I used ...no use) but after this diet, I am completely free of dandruff...
My question is ...Guys just go through the symptoms I have mentioned above, carefully...answer yourself.
I guess we all Peyronies Disease have pitta body. (fire to an EXTREME extent).
Lets discuss more.....
jks
honestly, I don't think that there is a pattern as you describe it amongst peyronies sufferers... Every case of peyronies is different, all the patients are different, IMHO. However, this does not mean that the therapy you are on is not good for you; maybe for you it is the therapy of choice. I truly hope so!!
Here comes my comment on your question about the "symptoms":
1. my metabolism is quite normal I would say
2. no dandruff, no baldness nor thin hair :) (I am 34)
3. medium to slim physique
4. I am a natural scientist, so sharp minded and analytical is true; good concentration: I would say no.
5. not at all! ;)
6. no! (only when driving during the rush hour! ;) )
7. Love sports (I ran several half marathons and last year even a marathon...)
8. view 4.
9. no
All the best!
This is very interesting actually...while a human being is an active part of a nature (but nowadays withdrawing from nature so much, hence all kinds of maladies), I think it has a particular sense. By the way, I fit to most of the points. Thank you.
Sometimes the problem is to get all the ingredients over the whole year, and sometimes it's really expensive. (e.g. tomatoes in winter :)
I welcome open minded discussion but the facts are there is NO medical basis to Ayurveda as you present it. You in fact describe it not as medical knowledge but as a philosophy. There is no evidence that philosophy and Peyronies Disease have any connection. We could just as logically try to associate Peyronies Disease with astrology or voodo.
Could it be ??? I believe almost anything could be true but I require a body of objective evidence, not just a statement of opinion or possibility.
I have to agree with Hawk on this. I use and have used Ayurveda herbals. Some of them are very good at what they do. Forskolin is just one example. But Ayurveda itself, with its deep roots on Hinduism, is not likely to be helpful, at least not on a scientific level. I much prefer to search for a medical solution amidst the findings of expert research than in the teachings of some ancient religious system. On the other hand, if you are looking for a spiritual solution, Ayurveda might be a possible choice, although it wouldn't be mine. - George
Quote from: Ralf3 on November 25, 2008, 12:44:03 PM
This is very interesting actually...while a human being is an active part of a nature (but nowadays withdrawing from nature so much, hence all kinds of maladies), I think it has a particular sense. By the way, I fit to most of the points. Thank you.
Sometimes the problem is to get all the ingredients over the whole year, and sometimes it's really expensive. (e.g. tomatoes in winter :)
If you have 'p' type of body (more of fire content) you should take less quantity of food that has heat.
Take more of water content and air content. Tomato to be avoided or taken less.....(more of heat ...thats why in hotels in starters tomato and pepper is used to aggrevate hunger)
Quote from: Hawk on November 25, 2008, 08:05:41 PM
I welcome open minded discussion but the facts are there is NO medical basis to Ayurveda as you present it. You in fact describe it not as medical knowledge but as a philosophy. There is no evidence that philosophy and Peyronies Disease have any connection. We could just as logically try to associate Peyronies Disease with astrology or voodo.
Could it be ??? I believe almost anything could be true but I require a body of objective evidence, not just a statement of opinion or possibility.
I agree with you....In india this Peyronies Disease itself is not a known disease among Ayurveda doctors.
In Ayurveda...all the diseases are symptoms only. Cause is something that is of more in content or something less in content....Always diagnosis is done using symptoms not using any medical equipments...
Especially skin diseases...are due to heat...thats why I raised this question that do you guys have these symptoms..Thanks for your reply.
JKS
Hi All... just an update to inform this page that i'm currently seeing a homeopath weekly, he's also doing acupuncture..!
i've seen him 4 times now and i'm taking a remedy on a daily basis which he gave me.
i am definitely noticing change going on but i just cant tell if its for better or for worse.. a stable state is being tampered with for sure so i'll just ride this out and see how i get on... i'll post my progress on this when i have more..
has anyone had any success with homeopathy..?
Quote from: ocelot556 on May 13, 2008, 05:10:18 PM
Why, then, are some people hailing Xiaflex as the next big drug to combat Peyronies Disease when it's an injectable? Wouldn't that, like verapamil and other injections, cause more plaque then it helps?
I have been healthy and active for 50 years but starting developing the dreaded ED issue shortly after my 50th bday. Around 2 years ago i started taking viagra (worked wonders fyi:) but soon after my fourth dose I developed a small lump on the underside of my penis. I don't remember any injury Soon after that occured I developed a small curve (around 15 degrees) upward and to the left. It caused slight discomfort but nothing too drastic. I lived with it like this up until 6 months ago when i finally went to my doctor and mentioned the issue.
I was always under the assumption that my doctor had injected me with verapamil but am i under the wrong impression? was it in fact possibly xiaflex or do they have topical and injectable verapamil? When I began reading posts I recognized verapamil as a drugname and thought it was what I remembered being treated with. Regardless, I was given the injection that i agreed to since it was the only option given to me at the time. This injection was painful and ended up making my curvature worse and more painful (I now use more due diligence after the last end result of just listening to anything my doctor tells me to do). I have tried numerous supplements that I thought would help and also that I've researched online (vit e oral and external, vitamin k, bromelain, magnesium) but feel like I could've done myself more good with good ol' snake oil. The only thing working for pain reduction as of now is advil and it does just enough of a job to allow for semi-enjoyable sex. Just wanted to thank everyone for the advice and informative posts, I will do my best to let everyone know if I have any success from my research through the posts. Definitely gonna keep snakes and bees away from my penis though, needles are scary enough.
just wanted to be sure that everyone knows from my previous post that I am in no way accusing viagra of causing what occured, it was just strange to me that it was the only change that i had in lifestyle before the problem developed. I assume it arose from a possible injury of some sort during intercourse.
wammy - To my knowledge, only those taking part in the current clinical trials are receiving xiaflex, so it seems likely that you received verapamil. How many times were you injected? In my personal, injecting someone with peyronies with a drug which is probably quite unlikely to offer significant improvement is a mistake. Those with peyronie's are possibly more susceptible that the general populous as a whole to develop further bouts of peyronies due to further penile injury, and an injection is an injury, especially if carried out by someone not especially skilled. Of course the pros and cons have to be weighed up though, and Xiaflex is possibly an example of a treatment whose benefits may completely outweigh any negatives. Early reports are positive.
As for your viagra comments, maybe you engaged in particulalrly vigorous sex at that time which caused the peyronies. Exact causes are hard to pinpoint for many peyronies sufferers.
OldMan - It doesn't seem like you had much luck with health professionals, not that I am attributing blame to any of them individually. It seems to be the culture in general which often pushes any intimate or sexual problem aside. It's a strange dichotomy really, as in many respects we live in a very sexualised culture, but when it comes to sexual health and functioning issues, where is much ignorance. I saw a tv show just a few days back supporting the fight against testicular cancer and the presenter almost seems ashamed to be mentioning the word "testiclar" and there was audible tittering and laughing about it all. It was all quite childish for adults to feel so very uncomfortable about something so serious. Still, it's better than not talking about it at all I guess. Aside from embarrassment, maybe part of the peyronies wall of silence is due to their being no recognised primary "go to" treatment for this problem - though argubly there are some here on this very forum. I would imagine that if xiaflex becomes such a treatment, we'll all be hearing much more about peyronies. A case of interest after the event, but it may result in more funding people pumped into peyronies and related issues so it's not all bad news.
As for your other comments, what is the consensus here regarding using viagra whilst living with peyronies? I have been here a while and I didn't think that it was such a big no-no? I assume it's something that splits opinion.
Newguy, I have not heard until just now much talk against Viagra for Peyronie's sufferers. I have not liked using erection aids. I always felt they made my penis do more than it should be doing, and after using I feel weaker usually. Even when I do use it, it doesn't really seem to do that much sometimes in terms of giving me back a good rigid erection.
Oldman, you do not have anything against people using Pentox though, right? Even though (forgive my scientific/medical ignorance) I thought the two drugs worked similarly.
I know of NO rational argument for not using Viagra. While it may contain a COYA warning because the FDA Trials did not include Peyronies Disease patients, I have seen no data linking it with Peyronies Disease problems.
Keep in mind that one of the more effective Peyronies Disease treatments is the PAV cocktail (Pentox,Arginine,Viagra).
I suspect that the initial ED is a result of Peyronies Disease and when Viagra is taken, you began to see the developing symptoms that were already in motion.
Just my opinion!
Quote from: Hawk on December 11, 2008, 01:29:44 AM
Keep in mind that one of the more effective Peyronies Disease treatments is the PAV cocktail (Pentox,Arginine,Viagra).
Yes, I use the PAV cocktail myself. I will factor in all opinions, but at present half a viagra tablet a day or every other day, does help greatly with erections, so unless the tide turns in terms of opinion, I will stick with it for the time being.
hawk
do you mean that the ED is one of the very first symptoms of peyronie's? shouldn't it start later in the "stable phase" (if such a phase exists...)?
Old Man
With all my complications from peyronies the only thing that helped short of implant was the VED exercise you sent me. Thanks
As to the subject of ED drugs and VED. I tried them all, no help. Did not cause any damage that I am aware of. The only thing is do not use the VED with injection therapy (trimix). Trimix was useless for me and only caused more damage with corporal fibrosis.
My doctor said to continue the VED therapy up until a couple of days before the implant. He said that the VED was very helpful with peyronies patients.
Surgery is a last resort. My problem was not the VED but I had to use the tight constriction rings for sex.
I know don't shout but Do Not Use Injection Therapy for ED!!!
Keep up the good work. IMHO if you have peyronies you should be on proper VED therapy.
Jackp
Quote from: didi20031 on December 11, 2008, 02:21:13 AM
hawk
do you mean that the ED is one of the very first symptoms of peyronie's? shouldn't it start later in the "stable phase" (if such a phase exists...)?
I think there are few consistent patterns or sequence of events with Peyronies Disease just like there is not a consistent pattern with a tooth cavity or metastasis of cancer. Do people discover a cavity from feeling it with their tongue, seeing it, getting a tooth ache, or from an exam? The answer is that it depends on a host of issues. In the case of Peyronies Disease it depends on the location, size of the plaque along with other factors. For instance, it makes a lot of sense to me that plaque may form in an area that it causes venous leakage. If there is no pain with your Peyronies Disease (which is not uncommon), then the first symptom one may notice is an erection which is not what it once was. The typical response is to assume you have ED from some other age related condition and reach for an ED drug. Next you see evidence of Peyronies Disease and .....
I think it
might be possible for plaque to interfere with erections in ways other than just venous leakage (nerves, arteries)
I often look for alternative "operating principles" to the standard explanations. For example, I dare say many sufferers, if their erection causes pain, let alone shame, have developed an almost instant attenuation--a flinching-like response--a conditioned reflex--to their erection. While an erection is "blooming", as soon as pain is felt the body recoils and the erection is nipped in the bud, so to speak, and the penis quickly reposes to a more tolerable degree of tumescence. Perhaps after a few dozen of these episodes the attenuation occurs early, long before pain begins. And, as with me, a "just-enuf" boner is artfully maintained--my, they shrink at the drop of a hat-- until one's sad spasm is done.
The implication to me is that what is perceived as a "variation" in the condition are actually variations in one's erections, caused by this conditioned response to pain. You cood indeed call this "erectile disfunction", yet the Peyronies per se, has not directly caused the "impotence" ...
hawk and ironman
thank you for your responses! quite an interesting theory, ironman...
Ironman:
I couldn't agree more with the idea that ED can be a result of cognitive recognition that we dislike what we see when an erection "blooms". After all, arousal begins in the brain.
I believe that the best true test of ED in the case of Peyronies Disease sufferers is the incidence & strength of nighttime erections. At that stage, hopefully, we have removed the conscious from the unconscious. All 3 urologists I've seen independently agree.
I probably have plaque on the underside of my penis and have lost most feeling there where I used to feel a great deal of pleasure. I am assuming the plaque may be blocking some nerve endings. The other areas where I have plaque cause me a great deal of pain. Nighttime erections are either nonexistent or are laughably soft. Sometimes I achieve a "harder" erection and it is noticeably curved downward. My girlfriend says she has not noticed it to be so though but we have never had sex so I don't know if she would have felt a difference. Whereas it used to point at a regular angle upwards it is now very noticeably dipped downward to me. I am assuming this is because what feels to be the largest amount of plaque is on the underside of my penis. All the other areas are much smaller but seem to be growing. I am on Trental. The other areas of plaque/scarring whatever else lead to a very prominent hourglass indentation that eventually feels up with blood if I wait long enough (my penis does not get hard, the indentation simply goes away) and a lumpy area that is on the top of my penis that looks like a cord and is right in line with my urethra. Generally after I pee it hurts. There is also a lump near the base of my penis on the left side that is probably causing venous leakage there as my erection is never as full as it should be despite me being incredibly aroused by my girlfriend.
So, I'm not really sure where to classify my ED. All I know is the inability to have sex and severe displeasure when it comes to sexual situations is very unsettling.
There doesn't seem to be one theory that explains everyone's symptoms. But there seem to be more and more posts that it was the Peyroines that led to the ED. Whereas the "traditional" theory is that as we get older (Peyronies Disease seems more prominent in those over the age of 40) our erections don't seem to get as hard. This is caused by other factors and not necessarily by Peyronies. However, as our erections are not as rigid as they used to be (although still well hard enough for intercourse) makes them more susceptible to bending or damage to the tunica. This in turn can trigger the scarring associated with Peyroines.
So it is the early onset of ED that made one susceptible to the Peyroines scarring. Just felt compelled to list the traditional Peyronies Disease theory.
Hey all. First off, I haven't posted here for a while and part of that is because my condition seems to have stabilized or even improved in recent months. The last time I had an erection I actually thought "Damn, I might be cured!" Turns out that I'm not and I'm hesitant to post to the improvement forum because I haven't taken pictures or anything and it's possible that it's just my perception. Anyway, I'm not taking any medications right now and not doing much else other than focusing a lot on nutrition (heavy into raw foods, superfoods, etc.) and believe this could play a big role in healing (as it does for most forms of illness).
Anyway, I do have a question and that's whether anyone has found stuff that's good for encouraging circulation in the penis/groin region. I think that I have poor circulation here and the evidence of this is that I normally don't hang very "full" when I'm flacid. I've noticed this problem increasing in recent years in conjunction with the onset on my Peyronies (I was diagnosed in early 2007).
From my understanding, one of the things that Pentox does is help with circulation. I don't want to be dependent on prescription medication so I've stopped taking that (which was also the recommendation of my MD). However, I'd love to work to encourage blood flow to this region. I've been doing a lot of yoga and while that *should* help it hasn't really seemed to. I've also done some self-massage of the groin area and that seems to help a fair amount.
I'm wondering what else some of you may have found to help with this and if indeed getting good blood flow to that area could be helpful to curing Peyronies. Also, are there any reasons why circulation to this area might be limited? I exercise frequently and eat a very healthy diet so I'm pretty sure it's not either of those things. Maybe stress? Anything else?
Thx all!!
Danny
What you describe sounds like Venous Leakage. The other possibility could be nerve damage in your back. Do you have back problems?
Get it checked out for venous leakage as it progresses you loose night time erections, ED gets worse, then corporal fibrosis. I don't want to scare you but after that penile shrinkage starts.
That is what happend to me. Also peyronies, as far as I know, can not be cured but managed.
Jackp
whats the difference between Peyronies Disease and corporal fibrosis?
Hitman
Peyronies effects the outer layers of the penis with plaque. As it develops the plaque can get larger and in about 33% of men the plaque will go away (12-18 months) but leave scar tissue (happend to me).
Corporal Fibrosis is fibrosis in the corpora as a result of injection therapy for Ed, PGE1 or trimix. Also loss of night time erections and severe ED lead to corporal fibrosis because of lack of oxygen to the tissue.
The best way to help yourself is VED therapy, I wish I had known that years ago. In my case and about 33% of the guys that the curve straightness on it's own with Vitamin E therapy it will leave you shorter than pre peyronies. As a doctor explained it to me, when it straightens your length will be the length of the short side of the curve. To demonstrate that curve your finger, look at the short side, when the curve straightens that is what you will have left. This happend to me in 1995 and the doctor then did not know what to do.
T took vitamin e 400iu three times a day until heart trouble in 2006 when I had to start Plavix. When I had to have heart stents I had an implant scheduled for the next week that had to be postponed for a year. Uro Rx a VED but the instructions were for sex only and I used it all wrong and caused a bruise that took weeks to heal.
10/07 found this forum and Old Man gave me a single cylinder exercise that I used for over a year. I did gain about 3/4 of an inch of the 1.5 inches lost to peyronies but after all that time the peyronies scar would not let me gain more.
With peyronies you need to be on VED therapy. If I had been in 1995 I do not believe I would have lost so much.
I did not intend to preach but this helps me get this out of my system.
Jackp
Quote from: DannyOcean on December 28, 2008, 08:19:09 PM
Anyway, I do have a question and that's whether anyone has found stuff that's good for encouraging circulation in the penis/groin region. I think that I have poor circulation here and the evidence of this is that I normally don't hang very "full" when I'm flacid.
Danny,
If I understand what you are saying I do NOT think this is venous leakage. Venous leakage is when the veins that drain the penis fail to seal off during the erection phase even though the arteries which lie much deeper in the penis are allowing a good blood flow to enter. You indicate your erections are not the problem but that routine flow into the penis seems reduced. I have experienced this myself, more at some periods of time than at others. If I understand the "increased circulation" aspect to pentox, it actually changes red blood cell characteristics to make them more flexible an able to get into areas they normally could not reach. While Pentox may help in other ways I don't think it addresses general blood flow.
Other than obvious issues with the heat rate etc., general blood flow is affected by artery dilation. Some things dilate arteries and some things constrict them. Locally, heat dilates arteries and increases blood flow. Locally cold and restrictive clothing can have the opposite effect.
Systemically, L-Arginine is the best natural substance to increase blood flow by relaxing (dilating) arteries. Body builders take it for a general "pump" and to get nutrients to muscle tissue during a workout. There are other substances but to my knowledge, they all pale in comparison. L-Arginine is taken at a rate of from 1000 - 8000 mg per day in 2 or 3 divided doses. You may see a visible result within an hour of the first dose although it is not always that obvious. L-arginine is a Nitric oxide (N.O.) precursor and N.O. is a key element in the first phases of the erection process. Viagra (1/4 of 100mg tab) would also help because it inhibits PDE5 which kind of stops the process that N.O. starts. PDE5 incidentally is only found in the the penis so it is specific to that area. Keep in mind that all of this may help the strength of your erections but the intent is to just increase routine or periodic blood flow.
There are a few things that can generally depress blood flow. One is several antihistamines that unstuff the nose by constricting blood vessels. The also counteract the effects of injectable ED drugs. In the case of pripism caused by an injected ED drug, the first line of defense is to take 2 sudafed. Second line of defense is to inject neosenepherine (sp), so stay away from these things. They actually attach to adrenalin receptors and constrict blood vessels much like an adrenalin surge (fight or flight syndrome). Anxiety and stress can also produces adrenalin and constrict blood vessels (and kill erections).
Finally, be aware that low blood pressure can be exacerbated by things that dilate the blood vessels so if you have low blood pressure proceed with caution.
Hope this helps!
Hawk
Thanks Hawk. I really appreciate that. Starting up on L-Arginine again is probably a good idea. I was on it before when I was doing the Viagra/Pentox/L-Arg stack per doctor's orders.
As for Viagra, I'm wondering if Horny Goat Weed is a good sub here. From my understanding it's also a PDE-5 inhibitor. I think it needs to be taken in much larger quantities than Viagra (I seem to recall that 10 capsules of HGW is about the equivalent to 25 mg of Viagra) though and I'm not sure if that's safe in the long term. Also, I'm trying as much as possible to stay "natural" these days which is why HGW appeals to me relative to Viagra but if that's a non-sensible mindset please let me know. :)
Finally, I am wondering about stuff like massage as it's fairly well-established that massage assists with blood flow and circulation. I've never really come across much about massage for the groin/inner-thigh area which is probably due to the fact that most reputable massage therapists never touch that area. However, it seems like if encouraging blood flow/circulation in this region is important then all of us should be engaged in some form of this massage on a regular basis.
you'd probably need a high potency extract of HGW to see an effect
I used 500 mg doses of HGW (I later noticed after reading the label more carefully that TWO capsules equaled 500 mg of HGW). So, for me, 2 caps equaled 5 mg of Viagra, and so 20 capsules would equal 50 mg of Viagra. Pharmacologically, I did not find it quite equivalent, but that many caps did give me a Viagra-like effect. Side effects were worse in order (worst to least): Viagra, Cialis, HGW.
I managed to purchase some Cialis in bulk online and like it much more.
Tim
Standard potency for HGW, by the way, is 10% icariin. Icariin being the active ingredient in HGW. I think I would avoid anything claiming a higher potency than that because you really don't know how they are extracting the icariin and the extraction process itself can introduce toxicities. This concentration and purification process really becomes a pharmaceutical process and it should be left to the expertise of reputable drug companies, not supplement manufacturers whose expertise and resources on a bio-science level tend to be much more limited. - George
First of all, excuse my english. I'm not natural english speaker.
I'm form Spain. I use to read some post in this forum and I have found it very useful, and supporting.
I have something like peyronies since 2008 spring.
First I started to have painful erections, and then my penis create an upward curve.
I found in a Spanish Peyronies Disease's forum a woman who explain a "solution" for Peyronies Disease. It came from Natural medicine.
She said that with red argile or "clay" cataplasm made with malva florer boiled water, the hourgass deformity and the plaque dissapears in 1 or 2 months.
Once made the argile or "clay" cataplasm, it must be placed arround the penis where the plaque is, during all night.
No metalic or plastic things must be used to made the argile. A rag can be used to surrond the penis during all nigth.
And take E vitamin with all tocopherol's gamma.
It's safe and cheap, so I done it for 2 months.
3 months after, the doctor did me a penie echography. I was the first time that my penis been ecographyated, but the doctor says that no calcified plaque, no pre-liquid bag or something similar were found, 8 months after I have my first painful erection.
I stil have a 52 degrees upward curve, but the next step is to do massages with aloe vera and
calendule oil.
Here you can find this post:
http://www.portalesmedicos.com/foros_medicina_salud_enfermeria/ubbthreads.php/posts/44835/solucion_peironie
I Hope i can help people w/ hourglass deformity. She said that her man reached it using these technique in 2 months, and I think I have erased my plaque, and now is the time to gain elasticity to my tunica albuginea.
D.
Yes Ralf3, Malva is the name of a flower. The blue one.
I use plastic, yes. People said that the red clay loose properties but sicerely, I can't find another way to surround it to my penis.
In Spain, red argile or clay 3 euros 1/2 kg. (Enought for 2 monts)
Malva flower 1 euro 1 bag. (Enought for 2 months)
I use it every night for 2 monyhs, and then, in a penile ecography, the doctor did'nt find calcifications, disordered colagen bag or something like this.
Another man (his wife) post also this results. In 2 months the hourglass deformity dissapeared, and the plaque can't be founded.
I hope you improve!
Please tell us if you found it useful. No problem if you want to ask me more
Welcome Danim!
The results you offer are very interesting. There is another possibility, though.
1) Pain usually goes away. Thus, it may be that your pain would have gone away anyway.
2) Calcification usually comes late. Thus, it may be that you would not yet have calcification anyway.
3) The curve is no different from your report.
Thus, it is possible that you have done nothing different than what one would see with taking just the vitamin E.
I think this is not likely to work, or to work for many people, because the ability of anything to go through the skin and to soak deeper into the tunica, is very difficult. The blood to the skin would carry away most chemicals (of any sort - natural or not). Only with something to drive the chemical deeper such as iontophoresis or DMSO, would we expect something put onto the skin to get deep into the penis.
I recommend that you keep searching and working for improvement as you are doing. The VED should be started soon.
Tim
Has anyone heard of or tried a device called peloop?
wwwpeloop.com?
It uses Germanium, Tourmaline and Magnets to stimulate bloodflow to the penis. The maker of the product claims it will generate cellgrowth and result in a larger penis. I'm not sure if I believe that, but can anyone with a scientific background go to the Website to look at his claims about how the magnet will affect bloodflow and the cells of the penis.
The device cost $40, which is not that much. I know it won't replace traction or VED usage, both of which I use, but if it works on the blood as he says it does the peloop can be a great way to keep a beneficial flow of blood going.
I imagine that it works much in the same way the wrist magnets do. I'm looking forward to your responses, especially from forum members with medical and science backgrounds.
Bo
Bodoo2u,
Trust me, this is trash science (actually no science) and snake oil extraordinaire. Magnets do not spin blood cells.
After spouting utter trash they fill up their page with such obvious remarks as blood is the difference between a flap of skin between your legs and a hard healthy cock. Needles to say that is obvious but it has nothing to do with magnets or ions. They sell what is nothing more than a constriction ring also known as a cock ring which will probably trap blood in your penis like any constriction ring or band.
I disabled your link to the product because links boost a page in search engines. This is not a site we wish to promote.
Thanks Hawk,
I'm glad you set me straight. I actually did some research on the product after I posted to the forum and all of the comments or consumer reviews were negative.
Guys, this is not the oral treatment topic. I move all the pentox posts to that topic.
Guys,
I tried to find some info on this forum about Physion, but I couldn't find anyone who actually used it. From what I understand, it must be used in conjunction with verapamil injections.
More info can be found here: http://physion.com/peyronie_edu/patientfriendly.html
Anyone used this?
Believer,
If you use the forum search to search iontophoresis, I am sure you will find information here. Tim, Combackid and others here have us iontophoresis which is what physion sells. It is used with verapamil cream but not injections. The concept is to draw the verapamil into the tissue with a very small electrical current.
Hawk,
I actually saw pictures of it coupled with a needle...not sure if I'm right though..TV is obviously garbage..
Click on "Search" on our menu bar. type in physion
then be sure to check "Show results as messages"
do the same thin with ionto
Often it is abbreviated in forum discussion.
It uses Verapamil solution, not cream. An electric current causes the charged molecules to pass through the skin and to an unknown depth - hopefully into the tunica. I had mixed results. It did not help my longstanding disease, but when I had an acute injury during sex a couple of years ago and developed a 45 degree bend to the left within 3 days, I hit it hard with iontophoresis driven verapamil, and it went away.
Tim
I'm on old man 3 cy. with good resalts.Grand son cut forhead pretty bad after surgery hild surgeon gave him cream to rub on it for 3 time a day said it would help sherink scar? He still has scar but not as bad as it was so how no?
Old Man,
Interesting. Not only can we not get our penis in such a machine, but also the Peyronies scar is not externally accessible. I have to wonder how much the cocoa butter also helped.
I've rubbed vitamin on external skin scars also with great success, but vitamin E did nothing for my Peyronies. Just another indication that the word "scar" is defined broadly and we should be cautious about comparing Peyronies scarring with something like a cut through our epidermis.
I dunno Old Man... about this access issue.
You could get a "therapist" to rub cocoa butter on your penis vigorously for fifteen minutes a day, but it might get you in hot water with your wife, and the police. I think they call that prostitution ::)
Tim
In regard to the current conversation. One can discuss access at length, but there are so many other variables at play here that it boggles the mind. Things like, for example, when you are talking about different tissues, you are talking about differing levels of oxygenation and blood supply. This can potentially alter reaction to external stimulus as to whether it can achieve a tipping point of making things better. Other things would be the question of whether or not the condition is in an active state or a stable state and what level of immune activity is going on within the scar. There there is the degree of damage, in other words the density of the scarring in question. A scar could be thick, but not very dense, henceforth more amenable to massage. On the other hand it could be very thin, but also very dense and perhaps irreversible by any means. Other factors could be differences from person to person in terms of surrounding metabolic environment. But Freddie aside, I have seen no convincing evidence that massage and ointments can cure or even be of significant help for Peyronie's. But Old Man is right, it might feel good. And Tim is also right in that you had better be careful how far you take it. - George
OMG...
George999, Oldman, Tim468 posting and stroking each other every day here. You guys are pathetic.
Quote from: George999 on March 01, 2009, 11:19:51 AM
In regard to the current conversation. One can discuss access at length, but there are so many other variables at play here that it boggles the mind. Things like, for example, when you are talking about different tissues, you are talking about differing levels of oxygenation and blood supply. This can potentially alter reaction to external stimulus as to whether it can achieve a tipping point of making things better. Other things would be the question of whether or not the condition is in an active state or a stable state and what level of immune activity is going on within the scar. There there is the degree of damage, in other words the density of the scarring in question. A scar could be thick, but not very dense, henceforth more amenable to massage. On the other hand it could be very thin, but also very dense and perhaps irreversible by any means. Other factors could be differences from person to person in terms of surrounding metabolic environment. But Freddie aside, I have seen no convincing evidence that massage and ointments can cure or even be of significant help for Peyronie's. But Old Man is right, it might feel good. And Tim is also right in that you had better be careful how far you take it. - George
"McBaba" - why are you here - again?
Trolls are not well tolerated here because, although we goof a bit, and joke around sometimes, this forum serves a purpose. It provides support (and sometimes humor) to men with Peyronie's Disease. I doubt that you have it, or if you do, that you are here for any positive purpose. You have posted twice about "anti-tnf trials" (there are none currently being done vis-a-vis Peyronie's Disease), so it appears that you have a more than passing interest in this subject.
And yet, you come in and flame and taunt. Why would that be? To what end? What grudge do you bear?
I ask, but frankly, am not that interested in the answer. I am interested in hearing what smart things that you have to say, but not much in the snarky things. I guess we could ban you, but I find it better to see if we can find a way to engage someone who is chronically angry to contribute. You seem to love ballet dance videos on YouTube, so I see that you are not negative about everything. Why not bring to us your best, instead of your weakest words?
Tim
McBaba,
Tim stated it well and certainly does not need my input but here it is for free. You have made 4 posts all of which are full of inaccurate and often foolish comments that are totally off topic to the conversation. You have violated rules by posting large quotes rather than specific quotes and then addressing those points. You are also pushing rules by tending to attack individuals rather than issues. After 4 posts there is no indication of why you are even on a Peyronies Disease forum.
Unless your next posts show you to be something other than a random troublemaker with no ties to Peyronies Disease, and with no interest in support or education, you WILL BE banned.
You have been formally warned and your PM capacity is restricted to 1 message so you must keep them deleted if you want to get messages
Quote from: McBaba on March 29, 2009, 07:50:26 PM
OMG...
George999, Oldman, Tim468 posting and stroking each other every day here. You guys are pathetic.
Each one of those members has contributed a great deal to this forum. They aren't "stroking each other" , there is simply a mutual understanding that we are a community where contributions are valued. Maybe you should take the same approach, rather than needlessly sniping at people.
Quote from: Tim468 on March 29, 2009, 09:32:46 PM
"McBaba" - why are you here - again?
Trolls are not well tolerated here because, although we goof a bit, and joke around sometimes, this forum serves a purpose. It provides support (and sometimes humor) to men with Peyronie's Disease. I doubt that you have it, or if you do, that you are here for any positive purpose. You have posted twice about "anti-tnf trials" (there are none currently being done vis-a-vis Peyronie's Disease), so it appears that you have a more than passing interest in this subject.
And yet, you come in and flame and taunt. Why would that be? To what end? What grudge do you bear?
I ask, but frankly, am not that interested in the answer. I am interested in hearing what smart things that you have to say, but not much in the snarky things. I guess we could ban you, but I find it better to see if we can find a way to engage someone who is chronically angry to contribute. You seem to love ballet dance videos on YouTube, so I see that you are not negative about everything. Why not bring to us your best, instead of your weakest words?
Tim
Tim,
What the hell are you talking about. Ballet videos on youtube? That kind of unsubstantiated talk can get you banned Tim. I work for a software co. I can do internet searches with better efficiency than you. There are no youtube ballet videos. See the petty gossip you started tim.
I think Baba is saying that your thread was very weak. I read the thread that Baba refers to. You, george and oldman going back and forth as a form of social recreation mostly.
I am a new member here and I noticed many reserected topics that seem to be made for what? So you can come here and have something to post everyday? Give it a break tim. No one is forcing you to post here every day. Why don't you go do some research tim, find a potentially new treatment option, and then post about that. Otherwise tim, you seem to be diluting the quality of information here.
Please, mo.
I won't do you the disservice to assume you're McBaba using the common troll trick of forming a new user ID to "back up" the old user's trolling. That's what it seems like, but I'll assume you really feel the way you do.
Tim, Old Man and others DISCUSS things and try to form a dialectic about this disease to better understand it. Sometimes we all engage in a little navel-gazing from time to time, but it's in the interests of a greater good.
Your posts have so far offered nothing of interest. I wouldn't think Hawk was being authoritarian in banning you (probably for the 2nd time). I will be ignoring everything you post from now on, and I suggest if you have a problem with other posters you do the same rather than trying to antagonize them.
I spotte this is my local supermarket last week and I wondered to myself whether it'd be better for peyronie's than the oral version. Of course it's no miracle medicine, and not something a person would stay on for longer than a couple of weeks, but for those in the initial stages of peyronie's I wonder if it could be of use?
Quote from: Tim468 on March 29, 2009, 09:32:46 PM
I am interested in hearing what smart things that you have to say, but not much in the snarky things...You seem to love ballet dance videos on YouTube, so I see that you are not negative about everything.
-Tim
Tim it appears to me you stuck your foot in your own mouth. You protest "snarky things" and in the same breath (you) post a snarky comment.
According to the the society's rules this thread is to being continued in the forum; General Comments (that won't fit under any of our other topics)
https://www.peyroniesforum.net/index.php/topic,54.msg19299.html#msg19299
THIS USER IS BANNED!
when the same person posts exactly the same garbage over and over under different names to try to get noticed. Its getting a little bit boring.
Quote from: George999 on April 09, 2009, 05:34:26 PM
when the same person posts exactly the same garbage over and over under different names to try to get noticed. Its getting a little bit boring.
I don't recall reading about topical ibuprofen over and over in this thread. It doesn't seem boring to me. Topical, avoids taxing the liver and gets right to the sight of the injury. Good post newguy.
Quote from: newguy on April 02, 2009, 10:08:47 AM
I spotte this is my local supermarket last week and I wondered to myself whether it'd be better for peyronie's than the oral version. Of course it's no miracle medicine, and not something a person would stay on for longer than a couple of weeks, but for those in the initial stages of peyronie's I wonder if it could be of use?
skeptical - Thanks. It was just something that occured to me as potentially useful. Just to add, that if you want to play a meaningful role here, then I think everyone would welcome you. You must not create multiple usernames though, or attack forum members, or make duplicate posts. We need to keep things friendly around here and be at least somewhat optimistic about the future.
Nice state. Has good service providers - Comcast and Illinois Century Network (the latter serves schools) give good service.
Not too hard to see when someone is changing names and IPs to flame others.
Skeptical/mo - why do you let me into your head rent-free at all?
I will look for topical ibuprofin on line. I like the direct approach. Thank you for making me feel welcome.
As for "attacking form members," lets face it, someone had to call tim out on the carpet for his rude and gossipy comments. And since McBaba has not been back here to defend his post, (some people don't feel the need to check this site every day), I am speaking up for the post he expressed. I am not speaking for him as it were.
A handfull of posters show their kitty cat claws on the pages here because others posted a strong difference of opinion. Speaking for myself, I don't couch my language with touchy feely terms. If you want touch feely, go on Oprah. In fact I am going to post a new topic under General Comments (that won't fit under any of our other topics). Would any member here be willing to go on Oprah Winfrey and talk about peyronies disorder?
Quote from: newguy on April 09, 2009, 07:31:35 PM
skeptical - Thanks. It was just something that occured to me as potentially useful...I think everyone would welcome you...We need to keep things friendly around here and at least somewhat optimistic about the future.
THIS USER IS BANNED!
Skeptical,
Listen closely, You run nothing here! You have got an awakening coming if you think you are going to show up and start telling members what to post, how often to post, or "call them out. If you or anyone has problems with the members on this forum you can address it to me or a moderator. If you do not like how the forum is run , the rules, or how the rules are administered then feel free leave and seek support or stir up trouble elsewhere.
I speak for the VAST majority of this forum when I tell you that Tim's contributions in his single worst post have far surpassed all of your combined posts, as well as those of McBaba, and MO who you take it upon yourself to represent. Evidence suggests there is good reason for you to see their point of view.
While you are refreshing our minds on the forum guidelines, I suggest you note the automatic ban rule that applies to anyone that double registers.
Your standing here is conditional on a behavior change. Me, the Advisory Board, and the members overwhelmingly reject your demeanor. You will be in a warning group until such time that you display an intent to learn, seek support, or share valuable information, rather than displaying an agenda of confrontation, disruption, and general rudeness.
As a member with an official warning you can have no more than 1 private message in your box or you will be unable to receive more. You are restricted from the member roster and other areas of the form. You will have your warning status displayed under your name as a non-voting member.
It is expected that this status will be changed to either a normal voting member or a banned member depending on your conduct.
Quote from: Hawk on April 09, 2009, 10:14:59 PM
Skeptical,
While you are refreshing our minds on the forum guidelines, I suggest you note the automatic ban rule that applies to anyone that double registers.
.
Hawk,
Listen closely, I run nothing here! You are laboring under false misapprehensions if you think otherwise.
As I previously posted, "since McBaba has not been back here to defend his post, (some people don't feel the need to check this site every day), I am speaking up for the post he expressed. I am not speaking for him as it were." So we should probably put to rest that conspiracy theory.
Here we go, I am going to correct you and I suspect correcting you will get me banned. Another poster called it; administrator/dictator practice. Actually Hawk you are not the only one to "call out" other posters. I do have a right to "call them out." As a responsible poster here I do not like to see posters posting ad hominem attacks or unsubstantiated gossip. Now you gun ban me.
Thank you hawk for also calling for an end to the ad hominem attacks.
THIS USER IS BANNED!
Quote from: skeptical on April 09, 2009, 11:15:54 PM
Now you gun ban me.
Thanks for the suggestion Skeptical. Consider it done!!!
Skeptical IS BANNED!
What happened to all the people that were in the latest Xiaflex study and their updates/comments on how the trial was going? ???
Meatus,
the information you seek is under the topic "Developmental drugs & treatments - Still in trial or not approved for Peyronies "
"What the hell are you talking about. Ballet videos on youtube? That kind of unsubstantiated talk can get you banned Tim. I work for a software co. I can do internet searches with better efficiency than you. There are no youtube ballet videos. See the petty gossip you started tim."
Now, as I assume most folks know, this is a post from someone who is frustrated and angry for reasons not at all clear.
But, FWIW, it does appear that someone named AliMcBaba does, in fact, appear to like ballet on YouTube. Nothing wrong with that.
http://www.youtube.com/watch?v=psx__V1373A
Of course, being identified as liking music would not normally be considered an "attack". Too bad that the enthusiasm that the AliMcBaba posting on YouTube has, is not present here.
Tim
Thanks Hawk! I appreciate the direction.
Guys,
Sorry for double posting but before I spend $50, I just want to hear if anyone tried this: http://peyronies-disease-help.com/penis-stretching.html
Thanks
This statement just makes me roll my eyes ::)
QuoteThis video presents detailed instructions to stretch and improve the six basic types of Peyronies Disease deformities:
1. Twist
2. Curve
3. Bend
4. Dent (also called a ding, depression, or hinge)
5. Hourglass
6. Bottleneck
Further, additional information is included that explains how to successfully stretch a combination of distortions, since very often two or more penis distortions appear together.
Assuming manipulating one's penis could improve it (which is a huge assumption), where would one even begin to get the knowledge on how to manipulate these various deformities and combinations successfully ??? There are no pioneers to build on, no such research. Did he try several methods with dozens of patients for each method and fail? Did he just have the gods of penis health smile down upon him so he got right on the first attempt what has elluded mankind for several hundred years? What percent of patients respond, 100% ??? Did he use objective measurements to verify the results ??? If so why aren't the particulars of that data displayed in large bold flashing print ??? Has he even met enough Peyronies Disease patients in person during his life-time to comprise a decent study assuming he had the design criteria for such a study ???
Does he just assume this might work, and if so why didn't he clearly state that :-\
The entire thing just leaves me shaking my head !
From personal experience, I know that even tried to tested traction methods are not always safe, for all of the people all of the time. Therefore when I hear of videos like this is worries me, because it no doubt encourages people with penile health issues, to bend twist and stretch their penis in all manner of durections. There's no research to back this up and as such I'd say that it's probably as likely to cause further harm, as it is to offer improvements. Manual manipulation is surely very variable in the amount of force delivered and as such it's both difficult to research and possibly dangerous.
I think people should stick with the VED and/or traction devices where you have at least some idea of how much pressure you're applying. I haven't seen this video, but I suspect that it's as much a business venture as it is an effort to actually help people improve their condition.
Great to see we got a discussion going here.
Let me tell you what I think about Herazy.
There is a good reason to think this guy makes easy money by selling vitamins from his vendor friends, writing books that present recessed information, and by running a blog where he discourages conventional medicinal treatments.
Now, having said that, his treatments at least make sense. Vitamins and herbs have always been used in other cultures, particularly in China. In addition, he is giving accurate advice on the dangers of modern medicine for Peyronies Disease - such as surgery, injections, and even traction/VED.
He has a conservative approach, and from what I understand - his stretching technique is designed to prevent trauma. He is a licensed chiropractor, so I presume he knows a little bit about stretching.
But I'm not defending him entirely. I don't appreciate his sponsorship of Neprinol - that thing is garbage and costs a ridiculous amount of money. If he wanted to be objective, he would not associate with them. And the whole "virtual" existence of the "Peyronies-Disease-Institute" without a patient office for live consultations just doesn't seem like a genuine thing. Though it is a GREAT retirement plan. Easy money, work from home, and no need for a warehouse. We are niche market guys. There's not a lot of competition and we are vulnerable to anything.
So I have a middle of the road approach to his services. I tried everything by the way. The large plans, all those pills - I was taking them for about 6 months, religiously. Didn't help me. But then again, maybe it could help someone else.
I would like to hear more from people who used his products, but properly used them - not for a week or a month.
As for the video, I'll probably give it a try. I threw the FastSize in the garbage after it literally added a twist to my curve. The ring at the base exerted pressure on the shaft....I should have known better.
Believer - Sorry to hear about your bad experience with the fastsize. Mine ws no better, or at least has the potential to be worse. It's ongoing. Tick tick tick :-S. I notice that none of these treatments go at lengths to point out the potential downsides and risks involved for those with these conditions. As for the discussion at hand, if what you say is accurate, then at least he's suggesting a conservative approach, so maybe I was a little harsh. I still doubt that he truly knows what kind of results his techniques will bring though.
Believer,
I'm with hawk on this one, just browse the site it is all re-hashed information. And is he a doctor, how many patients has he seem? Has he ever seen a real life case of peyronies? Where is his evidence, does he have one shred? This guy is a joke, I wouldn't buy anything from his site. Hes just taken already known info and copied it onto his site with all other potential treatments. But if he knew anything about peyronies he would definately have pentox on there... unless I missed it, I didn't see it on there, how could you not know about that?! Why buy anything from him? Don't let your desperation interfere with common sense man. I used the VED and I got a slightly worse bend but gained size. I'm still convinced that you need to somewhat soften the tissues before you can stretch it. Sounds like you had a similar experience?
Comebackid
As far as the FastSize goes, I wonder how no one had the same result I had - after wearing it for long periods of time, I basically got a twist at the base because that plastic ring was pushing hard on the shaft. I need to get a dual duplex to see what's in there, but I AM DONE with that medieval piece of...
With regard to Herazy, I think he is running the site primarily for financial gain, but offering logical ideas...
Hi Guys,
I am not promoting the use of this hormone that can be bought at Vitamin Shoppe or on line. It is called "relaxin" I noticed that this purchasable hormone has never been discussed on this board before. Here is just one link to an explanation what relaxin does for lung fibrosis:
http://www.modernmedicine.com/modernmedicine/Endocrinology/Hormone-Reverses-Asthma-Changes-in-Mouse-Model/ArticleNewsFeed/Article/detail/582951?contextCategoryId=40159
I only included the one link but you can key word search "relaxin and tgf beta" and there is plenty to read. I believe I will order this and I'll let you all know if it works at my fibrosis. Again I'm not suggesting anyone else try this.
I see tims links: http://www.youtube.com/user/AliMcBaba
The McBaba in tim's link lives in Europe, United Kingdom to be exact and that person is 21 years old. That ain't me honey. I also recall tim said I was sceptical who tim says hails from Illinois. I guess tim you overlooked the location discrepancy or you were that malicious to intentionally disregard the geography difference. Forget it tim, I forgive you and I'm sure sceptical forgives you also. Will the other members here forgive your malicious gossip is another question.
Quote from: Tim468 on April 11, 2009, 10:23:56 AM
But, FWIW, it does appear that someone named AliMcBaba does, in fact, appear to like ballet on YouTube.
http://www.youtube.com/user/AliMcBaba
Tim
The article on Relaxin cited by McBaba is certainly interesting. I saw it when it first appeared. But the problem is where to get Relaxin. McBaba notes that it is available from Vitamin Shoppe and indeed it is, or it certainly appears to be. But then, on closer look, one finds that the Relaxin sold by Vitamin Shoppe doesn't even contain any Relaxin. Read the ingredients: Relaxin from Vitamin Shoppe (http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=YS-1012). What DOES contain REAL Relaxin is whey protein products. But I would imagine one would have to consume a lot of whey protein in order to get a significant amount of Relaxin. The other caveat when it comes to Relaxin is how did the researchers administer it? Some of these things only work when administered intervenously. Also, in the abstract, it mentions recombinant relaxin, that would seem to indicate that they did something with the relaxin before they administered it, like somehow they modified its structure. So this is certainly very interesting, but a bit out of reach at this point, since no one appears to be marketing the real thing. - George
Recombinant simply means that it was created by artificial means instead of extracted naturally. Usually a biologic amplifier system is used (ie bacteria) to create lots of the chemical.
I cannot get to the full citation online from home, but it appears that they used a knockout mouse model that lacks the relaxin family of peptide receptors, and demonstrated increased fibrosis is a mouse model of airway fibrosis. The relaxin was probably given by a parenteral route (based on other articles he has written). The fibrosis that occurs in the airway is probably quite different than that which occurs in the tunica, but we have talked about this before here. The important paper in Nature by Gonzalez-Cadavid that has been linked up here before talks about relaxin as one of the receptors that might be blocked in attempts to block the effects of TGF-beta.
His article is here: http://www.nature.com/ijir/journal/v14/n5/full/3900873a.html
The niacinamide in the herb mentioned has been associated with portal fibrosis - but I doubt that this form of "relaxin" will do much one way or another.
Guys,
I have had Peyronies Disease since last 9 years, started at an age of 23. A thick band of scar tissue developed on the right side of the penis, and then another one on the left side of the penis. Result, Penis shortening,scarring and distal softening.
Medicines tried-
Pentoxyfylline, vitamin E, vitamin e oil, Penis traction, L-arginine, Carntine, Nattokinasse,Quercitine, Bromelain, Homeopathy etc. No result, but the scar worsended.
Then a discovery, Peyronie's can be completely cured with Acupunture.There are special points and needles are used to dissolve the plaque. Needles on the penis and on other points on the feet and the hands. I just have one sitting and penis got hardended and the lenght got increased by 1/2 inch.Think that the palque got softended, I have been guaranteed that I will get completely cured, and seeing the results in just sitting, I am sure I will be cured. Not jsut normal accupunture, but a special technique of rotating the needles through a special machine. Try it out, there is a cure out there, complete cure.No need to take any medicine.They are jsut useless.This is indeed a discovery.
You'll have to excuse me if I seem a bit skeptical. Are there any other facts to back this up? I've seen absolutely nothing on acupuncture and Peyronies disease. Even if I believe what you have stated, it seems like this was from your fist visit and in your own words you state that you "think" the plaque was softened.
Think that the plaque got softended
I hope whoever guaranteed this can deliver on their promise. I'm sure we will all be anxious to learn of your progress on your next visits.
Well I'd be skeptical that anything is a "guaranteed" cure for Peyronies Disease, and I wouldn't just dismiss other treatment options. That's a very strange conclusion to come to James, especially based on only one treatment.
HOWEVER, I can say from experience with many treatments that acupuncture has helped me to some degree with ED, at least on a short term basis - it has definitely increased bloodflow, and has also helped me with depression. I would hope that it helps to some extent with Peyronies Disease - it could be that it helped me with my first bout of Peyronies Disease about 14 years ago - I bounced back somewhat then and I wasn't taking any oral treatments. The Chinese doctors I've seen tell me there's really nothing specific in their literature about Peyronies Disease, but it seems to help my heath and well being overall without side effects.
I would also agree that going to a practitioner who uses the Chinese technique of heavy needle stimulation involving rotation is helpful - it has a much greater effect than the westernized watered down version of acupuncture which is very mild in comparison. I don't know what you mean by a machine to do this. I've seen at least 6 different practitioners over the years and nobody has ever stuck an acupuncture in needle in my penis! Nor has anyone ever suggested doing so. If they had I would have told them no. I've read elsewhere that's not recommended, sorry I don't recall where at the moment but considering the scarring I and others have got from needles that would seem to be common sense.
Thin Man
I can't see how sticking acupunture needles into the penis of someone with peyronie's is going to cause anything other than further scarring.
Well Peyronie's cases have been registured sometimes without an injury as well.So, it is something related to major parts in your body which start malfunctioning and the body reacts in the form of an inflammation.This acupunture techinique involves capturing the malfunctioning with an aquagrapgh. All the major parts lungs,heart, spleen, stomach etc are auqagraphed through a acupunture points scan. They then stick needles on the points where the aquagraph shows weak energy(mainly , those points have the graph blue in colour). Now they also stick needles to the acupunture points in the penis to dissolve the scar. This scar is nothing but fibrosis in the penis, and fibrosis has widely been treated by acupunture.
I have had my second sitting today, and results are jsut the same as where i was yesterday. It will take some time to dissolve the scar. However Ed due to distal softening is gone, and there is an increase in the penis lenght by 1/2 inch.
My intent was to let you guys know of something which can be benefitial to the Peyronie's patients.
OK James Cho:
Where do you live and where do you go for care? We list the doctors we see and tell others about their techniques so we can potentially share in the bounty.
So who does this? What papers, if any, have they written? Is there any controlled studies, even in the Asian alternative medicine literature, that tells us how it works?
I am curious.
Tim
Hi Guys,
Am through with 10 sittings today.The thick band of scar tissue on the right side has been reduced to half of it's original size.The one causing the distal softening inside the penis on the left side has shown no change. I am planning 10 more sittings.Erection and length has also increased. I am scared though about the end result as it is hard to beleive that results are coming .
Interesting James. I've read about the needle aponeurotomy (http://www.handcenter.org/newfile16.htm) surgery for Dupuytren's. Other than both procedures using needles, I don't know how similar they are. Both are "minimally invasive".
I had needle aponeurotomy on my left thumb 2 weeks ago. It was severely contracted and the surgeon was able to get a partial release, which helps a lot. Needle aponeurotomy is a lot less invasive than conventional surgery, but a lot more invasive than needle sticks. The surgeon goes under the skin with a very small instrument resembling a needle with a tiny cutting blade on the end, then (literally) saws away at the contracting band of collagen. He repeated this in about 8 spots. It was rough, and it hurt (like hell at a couple of points) but it's w-a-y preferrable to surgery, which I've had twice.
Could something like this be done for Peyronie's? Maybe that what the semi-legendary "Lariche Technique" was really about, but Peyronies Disease is somewhat different from Dupuytren's. The hand surgeon made his cuts and then pulled hard on my thumb, trying to snap/release the contracture, many times. My thumb still hurts 2 weeks later - no way could someone get that rough with a penis, it's much more fragile. And Dupuytren's contractures are fairly hard, sharply defined structures, while Peyronies Disease tissue seems to be more integrated with its surroundings.
Still, perforating it in enough places might make a difference.
What James is describing here sounds a whole lot like the Lariche Technique. I have little question as to its immediate effectiveness. The big question is whether or not the cure will be durable. I certainly hope that it will and I am interested in hearing more. So James, please keep us updated on this. And, at some point, you will need to tell us where you are getting this done so that others may benefit if it proves to be effective over the long term. Also, any information that your practitioner may know about this would be interesting if you can come by it. - George
I tend to agree with George. I'm sure in the short term of may well be possible to to see some improvements, but in people prone to peyronies I would be concerned that it could frequently/occasionally result in further trauma, which may not immediately be apparent. Maybe in combination with oral treatments to help against any potential problems it could be useful?
Also, in some people plaque is seemingly dispersed within normal tissue, or not even noticable. In such cases I don't see how this treatment could work. Still, please do keep us informed. All knowledge and experiences help us build a better idea of what works and what doesn't.
I'm pretty skeptical. To get any significant release or increase in elasticity you'd need a heckuva lot of perforation. Imagine a small square of rubbber cut from an innner tube. Poke a needle through it 10 times. Is it stretchier? I doubt it.
It may be able to stretch further, but the little strands between holes become quite fragile.
The published data on the LAriche technique are hard to find or read. The data on the similar technique in Dupeytren's is easier to find.
The idea is that a needle is used to scrape back and forth to break up the contracted and scarred tissue. If the tissue that is being broken up is a matted up lump, that makes sense. If it is hard to palpate and find, it probably will not work.
Tim
anyone familiar with the process of calcification? does every plaque/scar tissue area eventually calcify? In my case, injury induced scar tissue on the top of my penis (and some on the bottom) below the head. It has been 2 months since injury, and although the pain has subsided alot, the scar tissue really shows no signs of ever going away. I am learning how to live with it, but I am worried about what the future holds in regards to calcification and related problems.
Many guys worry about things like calcification and possible corporal fibrosis, but these things are not all that common. Most guys with Peyronie's have neither. So I wouldn't lose a lot of sleep worrying about them at this point. And if you can get started with Pentox, Pentox is known to prevent both. There is at least one documented case, in fact, where Pentox was able to reverse existing calcification. Also, vitamin K is known to prevent soft tissue calcification. So you are not doomed to calcification just because you have Peyronie's and even if you were, there are things you can do to prevent it. - George
james cho,
So ur acupuncturists is using an acugrapgh to measure energies and work from there? also can u go into detail regarding putting actual needles within the penis? is this neccesary. I will be meeting with an acupuncturist/TCM doctor at my medical school in regards to my issue and wanted to explore such avenues for possible treatment of myself. Where have u been treated, when did it start? etc. Looking forward to hearing from you.
Best,
Sflo
james,
p.s as others have stated, can you please explain the dynamics of acupunture. needle stimulation? and the idea of putting the needles through a rotating machine? Just trying to understand everything to talk with a TCM practicioner of your findings. Thanks again
Quote from: George999 on July 04, 2009, 10:23:45 AM
Many guys worry about things like calcification and possible corporal fibrosis, but these things are not all that common. Most guys with Peyronie's have neither. So I wouldn't lose a lot of sleep worrying about them at this point. And if you can get started with Pentox, Pentox is known to prevent both. There is at least one documented case, in fact, where Pentox was able to reverse existing calcification. Also, vitamin K is known to prevent soft tissue calcification. So you are not doomed to calcification just because you have Peyronie's and even if you were, there are things you can do to prevent it. - George
George999,
I agree that Pentox can help. But I was on Pentox and my plaque still started to calcify. And I believe that the odds of calcification starting may a higher than you are implying.
Les
lwillisjr - Is it continuing to calcify even now? Have you tried vitamin K2? You might want to take vitamin D if you think you are deficient, or take less of it, if you're already supplementing. Some studies I read suggest that too large OR too small amounts can encourage calcification, which is something I hadn't previously thought. Getting your levels tested might be worthwhile. Aside from this, I really don't know what I'd suggest.
I agree, peyronies keeps getting worse, but its very slowly overtime. One thing I observed that makes it worse is alcohol, you need to avoid this like the plague!!! Alcohol in heavy amounts has also shown to cause fibrosis in the liver! Why pentox may work for some and others I don't know? Perhaps you werent on it long enough? I'd say more like a year, not six months, thats to short! Maybe your body just didn't respond, or you got on it to late, who knows. I don't know if I'm calcified or not, cause I can't geta doppler ultrasound, at this point I don't know if I want to find out, might just make me depressed. I just keep taking pentox, working out, and avoiding alcohol at all costs!
Comebackid
I understand the rational behind avoiding alcohol completely. But, I seriously doubt getting drunk two nights a week carries any weight in regards to affecting peyronies.
Quote from: newguy on July 04, 2009, 08:26:36 PM
lwillisjr - Is it continuing to calcify even now? Have you tried vitamin K2? You might want to take vitamin D if you think you are deficient, or take less of it, if you're already supplementing. Some studies I read suggest that too large OR too small amounts can encourage calcification, which is something I hadn't previously thought. Getting your levels tested might be worthwhile. Aside from this, I really don't know what I'd suggest.
Newguy,
Thanks..... but if you have read any of my posts you might recall that I had surgery. The plaque was successfully removed and my erections straightened. So even though it was calcifying at the time, it is no longer a concern.
New posters here however need to understand that calcification is an issue, even with the oral drugs. And Dr. Levine feels little can be done once calcification sets in short of surgery.
Les
Quote from: ComeBacKid on July 05, 2009, 12:42:08 AM
I agree, peyronies keeps getting worse, but its very slowly overtime. One thing I observed that makes it worse is alcohol, you need to avoid this like the plague!!! Alcohol in heavy amounts has also shown to cause fibrosis in the liver! Why pentox may work for some and others I don't know? Perhaps you werent on it long enough? I'd say more like a year, not six months, thats to short! Maybe your body just didn't respond, or you got on it to late, who knows. I don't know if I'm calcified or not, cause I can't geta doppler ultrasound, at this point I don't know if I want to find out, might just make me depressed. I just keep taking pentox, working out, and avoiding alcohol at all costs!
Comebackid
CBK,
I was fortunate to live close to Chicago and found Dr. Levine. I simply followed his directions. Tried the Pentox, the Varapamil injections, etc. He thought 6 months was long enough to show a positive response. None of these worked for me and the next logical step was surgery. Which did work very favorably.
Les
Alcohol? Really?
Is there any truth to this or is this just "we don't know anything at all so avoid anything that might be bad" scuttlebutt? How is cirrhosis of the liver related to corporal fibrosis? What is the comorbidity for Alcoholic Liver Disease and Peyronie's? Wouldn't we have heard that one causes the other already if this were true? I can't think of a better way to get a man to quit drinking than to tell him it will painfully shrink, contort and bend his junk. I'm sure the medical community would highlight this unpleasant potentiality if it were true. You might also expect to see more patients diagnosed with Peyronie's instead of the oft quoted 3-5%
So, I would like to know the facts on this if anyone is privy to them. This condition has sucked enough joy out of my life, and probably yours, as is, and now we can't have a drink? >:( Next thing you know Peyronie's will be worsened by sunshine, puppies and walks on the beach.
Excessive alcohol use -> increase in weight gain -> increased risk of metabolic syndrome -> lowered testosterone levels -> increased risk of Peyronie's
http://www.sciencedaily.com/releases/2004/11/041116233400.htm (http://www.sciencedaily.com/releases/2004/11/041116233400.htm)
http://www.newsrx.com/newsletters/Obesity-and-Diabetes-Week/2005-10-24/1024200533340OD.html (http://www.newsrx.com/newsletters/Obesity-and-Diabetes-Week/2005-10-24/1024200533340OD.html)
Personally, I don't want to do anything that even remotely affects my Peyronie's in a way that might make it more aggressive. Thats why I avoid alcohol just like I avoid sugars. Enjoying life to the "fullest" has its risks. - George
Sure....... When you are drunk you are more likely to try a creative/risky position that could cause injury.
Sorry.... couldn't resist. Should have posted under the "on the lighter side" thread.
Quote from: lwillisjr on July 05, 2009, 04:17:19 PM
Newguy,
Thanks..... but if you have read any of my posts you might recall that I had surgery. The plaque was successfully removed and my erections straightened. So even though it was calcifying at the time, it is no longer a concern.
Oops, apologies. Yes, I remember now. You're certainly one of the success stories here!
Will one night out with three drinks make your peyronies worse, maybe not? Why risk it? Binge drinking will I can tell you that! My peyronies really worsened when I was drinking heavily in college, but no more than everyone else was which is still a lot. After stopping and going on pentox it got significantly better. Alcohol will dehydrate you and caue fibrosis of the liver, look it up! Avoid it like the plague, it is bad if you have peyronies! Drink a lot of water, work out, and take pentox, thats what I'm doing now, and my peyronies hasnt gotten any worse, and i've seen more improvements. I've had this headache for 10 years now, so I've learned a few things over the past decade...
Comebackid
Well Guys,
Aquagraph is to see and decide the areas in the body where they need to put the needles.Once they see the graph, they decide on the strategic points.The don't insert the needles blindly in to the penis, but they insert the needles in four strategic points which are meant for penis deformities.There is no blood,nothing. Rotation with hand can be painful as they need to prick those needles at all of those points for 20 min. I am getting acupunture on 14 points, this includes the 4 points in the penis as well. So we you maually stimulate each of these points, it is going to take 280 minutes for the entire process, 20 min per point, and it is painful as well.Instead, what they do is that they electrically simulate each of these points by putting wires with a small plcuker to stimulate these points. All of the 14 points are covered(in the feet, penis,hands etc,specially responsible to remove fiborsis) in just 20 min, and the process is not at all painful. It is essential to give acupunture in the penis as it is area which is affected, when you give needles at those strategic points, it strengthens the blood which has becomes weak in that area due to Peyronie's palque.It is the blood which gets strong, dissolves the plaque. Am not saying this is magic but will take atleast 3 cycles of 15 days each to show significant results.I have received around 15 sittings, erection has become strong and there is an increase in the lenght by 1/2 inches.plaque has softened which was a thick band initially, there is reduction in the distal softening as well. This is going to take time, atleast two more cycles of 15 days, but I guess this is the only option which has shown result, and I will go with it .
For the place from where I am getting this treatment from, I will share the doctor's details once I am cured to atleast 90%.
I respect anyone who decides to abstain from alcohol as part of their personal regimen to stay healthy. Good for you and keep at it. Excessive alcohol consumption is unhealthy in general and as lwillisjr humorously noted, may encourage poor decision making that leads to further injury. However, I have seen no evidence establishing correlation between alcohol consumption (moderate or excessive) and the development or exacerbation of Peyronie's. The only fibrotic conditions I have seen linked to Peyronie's with any certainty are Depuytren's and fibrosis due to complications from diabetes (I assume from poor circulation, low blood oxygen). I have found articles, such as the one below, showing no significant correlation between alcohol and Peyronie's:
(See page 12, bottom of paragraph 3):
http://books.google.com/books?id=nNc_SBEnyd0C&pg=PA12&lpg=PA12&dq=alcohol%2Bpeyronie%27s&source=bl&ots=6rlbrc92M5&sig=Y3P6eSxa1fzJ7hShomj_JQ6vNa4&hl=en&ei=fi9RSuvuEI6yswP16-yeCg&sa=X&oi=book_result&ct=result&resnum=5
I am very happy I found this forum because of the generally good information I find. What baffles me though, is I'll see posts discussing physical manipulation of the penis by stretching and pulling or the insertion of needles to deliver medication or for acupuncture therapy, but these things have known risks. Some of us got injured this way through administering injections for ED or by just plain getting bent in the wrong direction during sex, yet here they are as gospel. I like hearing about what other people are doing but we need to do better than telling people to avoid this or do that at all costs based on nothing more than anecdotal or personal experience. There's so precious little actual information on this condition that we owe it to ourselves to do better.
Frankly, having a glass of wine over a nice dinner with my wife or sharing a beer with good friends after a tough day are some of the little things in life that I don't want to give up right now because this disease has made my world a hell of a lot smaller. If you'll allow me to be the devil's advocate, I'll mention that we know moderate alcohol consumption is beneficial for the heart and circulatory systems and that the hops used in beer (a plant in the Cannabaceae family) have anti-inflammatory properties. Alcohol is also a vasodilator (more blood flow to those capillaries!). Am I telling people to head down to the pub? No. I'm just saying we should give the best information we have to new users of this forum.
-Skjald
Skjaldborg - I think some people find themselves in a place where they really don't even want to risk putting a foot wrong. For that reason I tend to try to have a very clean diet, and go months at a time without drinking alcohol (more out of habit, than intention). For what it's worth I don't personally think that the occasional drink is going to tip the balance, or cause you massive problems. If your overall approach is balanced and proactive, then that is the main thing.
Use of the VED has proved helpful to many members, and done sensibly it's a good option to go for. The benefits certainly outweight the risks. There are some powerful studies relating to traction which suggests that it can be helpful in those with a stable condition. You're right to state caution though, as there are several mentions of traction causing issues for people. It's all about taking a gentle approach, but yes there will always be an unfortunate few who do everything right, but somehow manage to inflamme their condion. In my experience, people here are quite dubious about injections, and do not universally sing its praises. As for the recent acupuncture posts, I actually think that many members are a little perplexed by them, but are trying to keep an open mind in relation to the experiences of others.
Also to let you guys know that he has also been practicing Homeopathy since last 40 years.He has given me a combination of 6 special medicines to remove the fibroids in the body.He also told me that the objective of acupunture is to trap the scar tissue at one single place and then to dump it outside the body as waste.Francally speaking I do find the entire band to be accumulating at one single point and rest of the area has become very soft. The scar tissue is contracting and getting consolidated at one very small location. I will ask him tomorrow as to what is happening.
Hi Everyone: Can anyone share their experience with traction devices like X4 labs or fast size? which one is better? Is it worth ordering one? Apparently, dr. levine belives in it.
thanks
I'm one of Levine's patients. I've used the Fastsize. I don't think it helped any with the curvature so I ended up with surgery. But it did help regain some lost length. I continue to wear it when I can. I thin most of the devices work off pretty much the same desing principle. You used to get a $30 discount I think on the Fastsize if you put LEVINE in the promo code.
Les
Guys,
My right side plaque is now 75% gone.Thick calcfied plaque has been reduced to a size of a peanut.I still have scarring on the left side though.Don't waste time on any other discussion.Try acupunture and see the magic. I am seeing after 9 long years of suffering.
Quote from: James Cho on July 28, 2009, 01:51:19 PM
Guys,
My right side plaque is now 75% gone.Thick calcfied plaque has been reduced to a size of a peanut.I still have scarring on the left side though.Don't waste time on any other discussion.Try acupunture and see the magic. I am seeing after 9 long years of suffering.
Any curvature changes? Do you have photographic evidence of any of this, or information concerning the person treating you?
Quote from: James Cho on July 28, 2009, 01:51:19 PM
Don't waste time on any other discussion.
James Cho,
I have a request!
Please, do not post any comment resembling the quote above on this forum ever again.
I think your posts are unbelievable, unpersuasive, and harmful.
It's one thing to make an undocumented, anecdotal assertion about a treatment
and quite another to dismiss this forum's voluminous discussion on treatments that have changed others' lives for the better.
Thanks!
I've heard other men say fastsize like devices have increased in length. I tried the VED and don't mean to cut down the fastsize, its possibly it could be incorporated with other devices and medication for a better all around therapy. Personally though I believe the VED gives a good stretch cause it fills up your penis like a cylinder. Assuming my plaque seems to be all around my penis, like it is in a cast. I want to pump up my penis and try to stretch that cast, break it, or just thin it as much as I can. For me and my application, the VED is the best option. I like you saw size gain, but no reduction in curvature. In fact my curvature may have gotten slightly worse, but this is hard to visual measure. I wonder if the plaque is to hard if it just won't stretch out?
Comebackid
CBK,
I wore the Fastsize because it is part of Dr. Levine's prescribed therapy. And I was following his advice to the letter. He also wanted me to wear it post surgery for a few months to keep the graft stretched.
Bottom line is we each use different things depending on our situation. That's why we need to be cautious when traction or a VED works for one person, it might not for another. Mine was in preparation for pre and post surgery.
I still want to try a VED just to improve overall penile health. Just haven't had the extra money to buy one yet, and I prefer the medical grade over a home built.
Les
Kool,
That is it, am not going to post anything now.after suffering from peyronie's for 9 long years,with plaque all over on the right side of the penis.I saw mine disapperaing like a meek enemy which appered so strong at one point of time. I thought of sharing things which I guarentee that will change anybody's life,but you guys are just not interested.Any point of time when you think that you wanna get rid of peyronie's,contact me and I wil help.Am not going to get any benefit, but want to help you guys who don't know the value of what I am saying.Take care guys..James will not bug you anymore.thanks
James Chao,
Maybe it is getting lost in the translation. We have been asking for information. We've asked for a doctor's name, a web site reference, a study of some sort..... and we get nothing from you. You just keep saying that "this is it" and to look no further.
We are not trying to be skeptical, but you are not the first who has made such claims. And they always prove out to be false medicines and practices. So if there is something to it, then provide additional information. If not........ thanks for the memories.
Les
Anybody with VALID information concerning Peyronie's will be willing to share it openly on this site. Others who visit this site are simply engaging in astroturfing and spamming. They want guys in pain to contact them privately so they can rip them off. Don't fall for that! They are like the people from Nigeria who offer you large sums of money IF you just CONTACT them and bite down hard on the hook. DON'T believe everybody who drops by here to post sweet nothings. Listen to the people who have been around here for a while and have proved themselves over time. They might not be telling you what you want to hear, but they are not trying to scam you either. Think twice before you contact someone you meet on this forum directly! - George
Quote from: James Cho on July 29, 2009, 03:31:01 PM
..James will not bug you anymore.
I hope you're sincere about that statement.
Your last post only strengthened my position that your claims are unpersuasive and harmful.
You fold at the "thinnest" of criticism.
good bye! Oh, and work at pretending to be an "English is my second language person" because your posts reek of impersonation!
CF
James cho - where are you based - if you have a cure let us know - pLEEEEEESE!!!
Quote from: George999 on July 29, 2009, 04:51:08 PM
Anybody with VALID information concerning Peyronie's will be willing to share it openly on this site. Others who visit this site are simply engaging in astroturfing and spamming. They want guys in pain to contact them privately so they can rip them off. Don't fall for that! They are like the people from Nigeria who offer you large sums of money IF you just CONTACT them and bite down hard on the hook. DON'T believe everybody who drops by here to post sweet nothings. Listen to the people who have been around here for a while and have proved themselves over time. They might not be telling you what you want to hear, but they are not trying to scam you either. Think twice before you contact someone you meet on this forum directly! - George
You took the words right out of my mouth.
Couldn't agree more.
I don't want to contact anybody privately, and then intent to rip them off... This is one thing which I waana clear.I have not given any information of the doctor because I am myself not 100% cured.Just one calcified plaque is 75% gone, and I have scarring on the left side as well.And who is asking to take treatment from my doctor.All I am saying to try acupunture, and I can tell you the points where you need to take acupunture on.I have spoken to my doctor as well. I am the first case of peyronie's he has ever dealt with, so it is not that he has been curing peyornie's since ages. He take it a simply fibroids which can occur at any place in the body.so, he is giving me treatment to remove fibrioids which can appear at any place in th body.Am going to a hospital which deals with only acupunture, and specialize specially in curing incurable diseases.
James Cho,
It is really hard to tell if you are a goof or for real. Usually, here, I have learned that when it is hard to tell, I err on the side of assuming someone is a goof (meaning a person who is making things up for fun, or for profit).
The things that you say do not make sense. I don't mean the acupuncture stuff - that has never made sense to me, but I can still accept that it works for many things for reasons I do not understand. But smart as I am, I cannot really tell you why the light comes on in my office when I flip the switch, either. I am willing to simply accept that others do understand it well, that it works, and that if I pay my bills and flip the switch, the light will come on.
No, I am not talking about acupuncture (more on that later). Rather I am talking about the other stuff that you say.
For instance, you say that you don't want to say his name because you are not 100% cured yet. But have you noticed how none of us are "100% cured" here by doctors? Yet that does not keep us from posting their names and addresses. I am not afraid to tell someone to go see Dr. Lue or Levine by name, although they don't usually completely "cure" anyone's Peyronie's.
For instance, you say "I thought of sharing things which I guarantee that will change anybody's life, but you guys are just not interested."
Huh? We keep asking you for details. Is that not "interested"??
There is a grand tradition of medical care offered by Acupuncture, and treatment of Peyronie's is not part of it. Never has been. So, you have a doctor who is winging it. Maybe it is helping to break up the plaque in the way the so-called Leriche technique does. We have no clue because you don't really tell us anything near good enough to know what is done to you (never mind when, where or by whom).
Nope, most of what you say makes no sense at all. Most of us would like to believe that a fix is out there for us, waiting to be found, or made available to us. Most of us are hopeful.
So, name a doctor, name the hospital, name the place, and tell us how much it cost, and then it would be a bit more believeable.
Tim
James Cho's posts are classic red flags of fraud and deceit.
http://www.healthcentral.com/chronic-pain/treatment-162420-5.html
Learn to Recognize the Red Flags
Before you even consider spending your money to try a new product, look for these warning signs:
"Products or techniques that are promoted through interactive online communities.
Although most online communities work hard at trying to keep spammers out, a few do occasionally slip through the cracks. Spammers will try to infiltrate any health-related community site.
They may show up in blogs or SharePosts, comments, forums and message boards. Frequently they claim to be someone who has been healed or at least greatly helped by a particular product.
They invite you to visit a Web site or give you an e-mail address or phone number where you can get more information. Although they seldom admit it, most of the time these people are affiliates of the company selling the product and their primary motivation is making money, not helping you.
The best thing you can do when you come across a questionable post is to notify the Web site host or forum moderator so the post can be deleted. "
Unfortunately, James Cho is still a a member of this community and accessible by private message from any forum member. IMO, JC has infiltrated this forum and he/she is fraudulently benefiting from his/her membership status alone because of this forum's private message feature.
IMO, JC's postings entitle our forum moderator to the presumption that JC is purporting a fraud/scam. And because of our forum's private message feature, JC's membership should be quashed until he/she overcomes a burden of showing (for example, establishing that he/she is "more likely than not", i.e. more than 50%, or a more stringent "beyond a reasonable doubt" standard) to the moderator that he/she is not purporting a fraud/scam.
CF
I am not sure, cowboyfood.
He is not recommending a specific person, and his rationale for that *seems* to be related to not wanting to be a spammer. That may be a legitimate thing. He has not hinted that he will help others through PMs, either. I think that if others start to report that he is sending them to a classic rip-off center (and they are out there!) via PMs, that would cinch it fo rme. Similarly, if he engaged in an open dialog about who he sees and where, so we could judge it, that would also convince me (the other way).
I will leave this to Hawk. I think that we always try to focus on openeness here and that may not always work well. But when we voice our skepticism openly, without censorship, I think that helps others even more.
Tim
Quote from: James Cho on July 29, 2009, 03:31:01 PM
Any point of time when you think that you wanna get rid of peyronie's,contact me and I wil help.
Tim,
JC may be legitimate, or he/she may not be.
Our forum's "openness" is certainly an important and significant forum interest.
However from what I understand (see forum rules), it is not the forum's
only important and significant interest.
I'm simply making the claim that JC is a fraud, as evidence by his/her postings and the methods of internet spammers.
Is he/she a fraud? I don't know. But, I am also claiming that JC's posts entitle a reasonable person to come to a conclusion that JC is a fraud. At what point should our moderator should act in the interest of protecting our members from being taken advantage of is within his discretion.
I'm offering some reasonable guidelines in dealing with suspect posts. For example, shift the burden of showing "innocence" to the poster after some defined conduct.
Free speech is not unlimited, especially in the private sector.
CF
Quote from: James Cho on July 29, 2009, 03:31:01 PM
Any point of time when you think that you wanna get rid of peyronie's,contact me and I wil help.
Quote from: James Cho on July 30, 2009, 01:16:01 AM
I don't want to contact anybody privately
Tim,
JC may be legitimate, or he/she may not be.
Our forum's "openness" is certainly an important and significant forum interest;
However from what I understand (see forum rules), it is not the forum's
only important and significant interest;
prevention of intentional deceit for financial gain (type of spam) is another interest. In fact, it's such an important interest that anyone
suspected of this type of deceit faces a possible immediate and permanent ban.
I'm simply making the claim that JC is probably a fraud, as evidence by his/her postings and the methods of internet spammers. See the quotes above: JC impeaches himself/herself in his/her last two postings.
Is he/she a fraud? I don't know. But, I am claiming that JC's posts entitle a reasonable person to come to a conclusion that JC is a fraud. At what point our moderator should act in the interest of protecting our members from being taken advantage of is within his discretion.
I'm offering some reasonable guidelines in dealing with suspect posts. One remedy is to shift the burden of showing "innocence" to the poster after some defined suspect conduct. For example, statements resembling "the magic of acupuncture has cured 75% of my peyronie's disease, contact me if you want me to help you" could be construed by a reasonable person that the post is fraudulent, and would ban the poster until he/she demonstrates to the moderator that they are not deceitful.
Free speech is not unlimited, especially in the private sector.
CF
There IS at least one explanation as to why acupuncture might by helpful aside from the Leriche explanation. That has to do with the association of acupuncture with endorphen release. The release of endorphens which is stimulated by acupuncture has an extremely powerful anti-inflammatory effect. The problem I have with this theory is that this effect generally lasts for no more than 30 hours. In the case of Mr. Cho, this would mean that he would have to be getting daily acupuncture treatment for this explanation to be valid. I also see no reason to believe that even if it IS working for him, that it would also work for anybody else as he asserts. The whole thing just doesn't sound right to me. I want to know WHERE he is getting this treatment so that I can hear the same thing from at least one other person, a real person, not just someone posting anonymously on a message board.
ALSO, cowboyfood has just made a good point. WHY is Mr. Cho telling people to "contact me" for more information. OBVIOUSLY he wants to hook a fish here. That is, he wants a private audience whom he can feed carefully chosen information to and KNOW that what he says WON'T be subject to scrutiny from multiple people on the forum. This is NOT a good sign. There is indeed something VERY wrong with this approach. Additionally, like some banned members in the past, he forever promises to go away, but never does, and never will, until he is ... banned. And then he will probably return multiple times with different aliases. Its the way these scammers operate. - George
Sorry for the "double post!" I was trying to make sure I included JC's contradictory statements from his/her last two posts; and IMO, significant contradictions.
FWIW, the following is an article on acupuncture. I cannot vouch for it's credibility:
http://www.ncahf.org/pp/acu.html
CF
Quote from: sgtnick on July 30, 2009, 09:11:26 PM
You guys should not be so hard (no pun) on Bro Cho
Well, I've pretty much laid out my entire argument why JC should be banned. But, I take a little exception that I was being "so hard" on JC. I would characterize it as critical (and, in it's mildest form).
It's possible that JC is completely legitimate and all of his claims are fantastically true, while at the same time sounding ironically similar to internet scams alleging "complete cures to incurable diseases." (although oxymoronic - it's one of my favorite James Cho poetics!)
Correct me it I'm wrong, but I was the first one to "challenge" Cho's claims after Cho alleged he had recently been 75% cured of Peyronies Disease in six weeks. Others simply inquired for more information of his hopeful treatment.
My "mild criticism" consisted of stating that I found his claims (1) unbelievable, (2) unpersuasive and (3) harmful.
I thought they were unbelievable (oh, and he concedes this in one of his first posts, "hard to believe" this is true) for the simple fact that he claimed to be cured in just six weeks. (I guess Cho took it the wrong way; I meant it as in "Wow, six weeks, unbelievable!").
I thought his claims were unpersuasive because he does not respond to member inquires and offers no scientific documentation other than that it's acupuncture.
And most disturbing to me, I found his posts harmful because he encouraged others not to waste time discussing any other treatment.
Legitimate criticism IMO.
But, Cho uses this challenge as a pretext to "leaving us alone" and to
contact him if anyone one reading his posts
wants to be cured.
IMO, the invidiousness of that particular post is offensive and telling.
Sure, it's entertaining fodder for some. But, it was only a few months ago I knew absolutely nothing about this condition and I was susceptible to anyone's suggestion for relief. The psychological impact this condition may have on one is enormous. I assume that many other forum readers are in this vulnerable state of mind; again, please correct me if I'm wrong. They are the ones I thought about after each JC post.
I could be wrong. So, someone more open minded than me might want to alert Auxilium of the "discovery" (sorry, too little too late) and inquire about any investment opportunities (get completely cured and rich).
CF
I guess I pretty much agree with Sgtnick that there's no real reason to ban "Bro Cho" just because he offers a possibility. On the other hand, I commend anyone who points out the flaws in his comments & dares to hold him accountable to scientific proof. That is certainly part of what this forum should be here to do. I used to work for years in the health supplements industry & if I learned one thing above all else it was that people will take anything (& to excess) if they think it will cure them no matter how many warnings you give them. On balance, we all have to accept responsibility for our own choices & if we fall for a scam - especially after being cautioned & warned - then we do. The old addage "you can't protect people from themselves" applies here.
He stated no one had asked or IM'd him. So I IM'd him. Said I'm very interested and need more information. I asked for references, diagrams, acupunctures points..... anything. I've heard nothing.
In future if someone states a treatment that sounds too good to be true and refuses to state the information publicly, we should just assume that they are stringing us along and take it from there. Lots of time appears to have been dedicated to this person in a thread about alternative treatments. Maybe we could do with a disputes thread where we place comments regarding issues with users intentions (spammy, sock puppet accounts etc)? Or in an existing thread... perhaps in the site intregrity thread: https://www.peyroniesforum.net/index.php/topic,563.0.html
Hi, am new here but after reading some of this thread thought I should chime in with one little tidbit re the acupuncture thing. Skin needling has been used for scar reduction in the acne community for quite some time with success. I have heard about scar reduction via needling from many sources.
Definitely not saying that any of what he claims/says is true, and I should note I've only really read these first two pages of the thread, but thought the information on skin needling might be interesting to some.
Won't post links of course, but just google skin needling scars or something similar and you should find some info.
Has anyone tried leeches yet? I hear they are helpful for a lot of problems ...
Anyone wishing to make multiple posts and promote a product please read the forum rules:
...
"9. We allow those selling items for profit to declare their intent and make statements and answer questions about their product after making full disclosure to the administration. However, anyone suspected of posing as a Peyronies patient to influence a commercial transaction (a shill), is subject to an immediate and permanent ban. Spamming the forum with promotions, links, or trolling for membership will not be allowed."
I might start using rosehip oil as an alternative treatment. Part of what I am doing is prolonging an erection for quite awhile, and I could just as easily use rosehip oil for lubrication as anything else.
As it has scar softening properties, it might be a good addition.
Hi Skunkworks,
Do you know what you're taking specifically that's helping to prolong erections? If you're taking many supplements it can be hard to tell, but what's your best guess?
Thanks once again,
TM
Quote from: Thin Man on August 19, 2009, 03:03:50 AM
Hi Skunkworks,
Do you know what you're taking specifically that's helping to prolong erections? If you're taking many supplements it can be hard to tell, but what's your best guess?
Thanks once again,
TM
Well I am taking horny goat weed and flax seed oil, but in this case when I say prolong an erection, I mean i am using my hands in a fashion that may make me go blind, but not letting myself 'boil over' until I have been very hard for about 45 min at least.
why isnt anyone posting anything?????????
Quote from: Iceman on August 24, 2009, 01:46:58 AM
why isnt anyone posting anything?????????
You mean in this board or on the forum ???
The forum has had a high number of posts. In other boards. If you are having trouble finding them I will try to help.
Iceman - Show Unread posts since last visit (https://www.peyroniesforum.net/index.php?action=unread) (top left, below the site logo)
If you glance under the 'Main Peyronies Disease Discussion Boards' you'll see that several boards have been contributed to today. The new layout is a little confusing at first, but the new.gif at the end of the updated threads should alert you to the fact that people have posted :). I'm sure you'll get used to the changes.
thx guys - just as an update ive been trying curcurim and its giving me an allergic reaction - my question is:
1_ how long do I sat on pentox for - ive been on it for well over 15 months now and ive got 4 months supply left - so is this a never ending intake - there must be a limit to this...what do I do
2) see above - re: larginine + ALC
much appreciated ( at least the pain has gone - yayyyyyyyyyyyyyyyy) - i can believe its finally over:)
Iceman - I've seen some urologists suggest that most benefits from pentox can come without six months. Really though, they are probably just matching this somewhat to the lifecycle of a typically case pf peyronie's. See how you feel in 3 months. If there are no additional physical changes or pain, then maybe you could stop taking it if you don't feel comfortable. In research posted here, for some conditions pentox has been taken for around three years, so that should give us an idea of how safe it usual is. I appreciate the point of not wanting to stay on medication for extended periods of time though.
I was worried about a similar thing, Iceman.
It can't be good to have your liver constantly having to process pentoxifylline. I don't know how toxic the drug is, but since we're required to employ longterm use, what's the risks to our overall health?
I do see a risk of relying on more and more medications to treat this condition, and that's where learning all you can about everything you take is a good idea. Pentox has been around for ages though and is safe to take for many years (or at least three years: http://bjr.birjournals.org/cgi/reprint/75/893/467.pdf). I don't really see a scenario where peyronie's sufferers would need to take it for longer than that anyway, unless there is a noticable negative effect when doing so. As for the liver, well pentox is actually useful for people with certain liver conditions, and I haven't heard of any liver issues caused by pentox.
In some ways I do share your concerns. Although I don't take many prescribed drugs I'm on an awful lot of supplements. I think it's human nature to feel slightly odd when taking lots of pills each and every day, but realistically we are likely improving our overall health and reducing the chance of several nasty illnesses and diseases by taking these supplements and by making dietary changes. The last four messages would probably be more at home in the oral supplements board.
I started using HGH 1 month ago. 2 units daily, Wanted to heal the injuries I suffered July 12th. Within days my pain was way down. I just wasn't healing and was tired of it. The HGH definitely helped me heal. I feel like I 100% healed now and now I can move on to the next phase and hope the calcification doesn't get worse that I see on ultrasound.
During the HGH treatment, I saw no change in curve, But noticed pain decrease as it healed.
I also added hyperbaric chamber two weeks ago and that helped within 2 visits. Pain is now a 2 as compared to a 7. This was hospital grade unit at 2.5 atm. All that oxygen and HGH healed it. I think this should be standard treatment for penile injuries to avoid chronic wounds that scar. I started this within 2 months of my injury, so maybe thats why it helped. Wish I had done it day 1 and might have avoided any curve.
I also added the hyperthermia in spa and that reduce my curve somewhat, although is harder to really tell if its permanent as it might go back to 25 degrees if I ever stop. Its now at 10 degrees.
But I am more optimistic than before as the pain level is so low that I can function again.
I take the standard regimen also of Vit E A D K C, ALC, and use castor oil on my unit daily.
I am unsure if these treatments are helpful for plaque and calcium, but for those in the active phase, I do recommend them for healing. I have seen some suggest that HGH heals you to fast. I doubt it, it helps you feel like you are 18, thats it. I like healing like an 18 yr old. It also might not help younger people as you already heal fast. You might be better off with hyperbaric chamber and its mega oxygen dose. The chamber gives you so much oxygen that you don't need red blood cells at all to even breath. Your blood is so saturated with oxygen that it goes everywhere, even where blood cells can't go. perfect for the penis and tunica that is hard to reach for red blood cells. But this is only true for medical grade units, the 1.3 atm don't cut it. You need +2.0 atm to really benefit. I did 2.5atm at first and now do 2.0 atm.
I have a doctor in Oakland, CA who might prescribe it for you. He had never tried it for this, but was great and wanted to try it. Couldn't hurt he said. He wanted to see how I did on it before he would write it up as a possible treatment. He specializes in Hyperbarics. He is hoping the pressure and oxygen will create new blood vessels through the calcium deposits and help break them up. I have linear bands of calcium through the cavernosa at the injury, but no large solid plaques that you can feel. But even if it doesn't work on that, the healing powers of the treatment was awesome.
Has anybody tried homeopathy for peyronies? ???
Quote from: young25 on September 30, 2009, 05:18:53 AM
Has anybody tried homeopathy for peyronies? ???
Who knows? Has anyone tried eating grass and 4 month old dog feces to treat Peyronie's? It would probably be just as effective and quite a lot cheaper.
The efficacy of most treatments for Peyronies Disease, oral or otherwise, seem to be so subjective. There doesn't seem to be any objective results available for anything so it's just like taking shots in the dark. How can one sufferer be objective about the effect of a treatment on pain for example or in it's affect on the progression or arrest of the fibrotic process?
[I had a large bladder stone bothering me for about 3 years before I gave in 2 months ago to having it blasted away with laser surgery. About 7 or 8 months ago I noticed that my penis became curved on erection. Also, I noticed that upon ejaculation, it doesn't really shoot out. It just kind of of comes out a little delayed. It sounds like Peyronies's Disease. I did some groundwork and was wondering if anyone knows if Acetlyl L Carnetine is helpful. I'm 53 and perhaps this is natural for ejaculation at a certain age?
[/quote]
Quote from: Wintercookie on September 30, 2009, 03:35:09 PM
The efficacy of most treatments for Peyronies Disease, oral or otherwise, seem to be so subjective. There doesn't seem to be any objective results available for anything so it's just like taking shots in the dark. How can one sufferer be objective about the effect of a treatment on pain for example or in it's affect on the progression or arrest of the fibrotic process?
I agree, it's a tough situation to pick apart. The fibrotic process is a healing process really, so if and of itself it isn't negative, but people understandably view it as such. So we can have a situation where something may be working, probably marginally, but from the patients purspective the opposite will appear to be true. Some drugs may help to reduce these fibrotic processes so that's one window of opportunity. Primarily I believe that we will KNOW for sure that something works when we're able to administor a treatment to those new to peyronie's and within a very short space of time the inflammatory process will stop. As in 'in a very short time', no ambiguity, no 'i think' this might be working. That is the only way we're going to 100% know that we've hit the jackpot. Kill off the inflammation and we can heal with any scare tissue formation in a more effective way. This will be of limited impact to those with damage for x number of years, but one of the key problems even in those groups is the problem of flare ups or progression of their disease beyond a point that is seemingly typical of peyronie's patients (if there is a typical), so it will help everybody. I think the Oxygen Therapy approach would be a worthy of studying for those with the condition for a very short time, and with very active inflammation: https://www.peyroniesforum.net/index.php/topic,961.0.html If it does n't work, we cross it off the list. We need to be exhaustive in covering all the bases, even if it doesn't benefit us personally.
Quote from: Sfabian on September 30, 2009, 05:54:17 PM
[I had a large bladder stone bothering me for about 3 years before I gave in 2 months ago to having it blasted away with laser surgery. About 7 or 8 months ago I noticed that my penis became curved on erection. Also, I noticed that upon ejaculation, it doesn't really shoot out. It just kind of of comes out a little delayed. It sounds like Peyronies's Disease. I did some groundwork and was wondering if anyone knows if Acetlyl L Carnetine is helpful. I'm 53 and perhaps this is natural for ejaculation at a certain age?
I don't believe that diminished ejaculation is associated with Peyronies Disease. I'm 53 and mine has also diminished somewhat over the years. For me it me it seems to have more to do with how much foreplay there is before climaxing.
Quote from: lwillisjr on October 02, 2009, 08:13:58 PM
Quote from: Sfabian on September 30, 2009, 05:54:17 PM
[I had a large bladder stone bothering me for about 3 years before I gave in 2 months ago to having it blasted away with laser surgery. About 7 or 8 months ago I noticed that my penis became curved on erection. Also, I noticed that upon ejaculation, it doesn't really shoot out. It just kind of of comes out a little delayed. It sounds like Peyronies's Disease. I did some groundwork and was wondering if anyone knows if Acetlyl L Carnetine is helpful. I'm 53 and perhaps this is natural for ejaculation at a certain age?
I don't believe that diminished ejaculation is associated with Peyronies Disease. I'm 53 and mine has also diminished somewhat over the years. For me it me it seems to have more to do with how much foreplay there is before climaxing.
It could well diminish the force of ejaculation though, as it has to go round a bend.
skunkworks / Les
I will be 67 tomorrow and over the last several years have noticed a natural reduction in ejaculate.
After being diagnosed with kidney stones last March I started drinking more water and added a glass of Cranberry Juice daily.
It does two things for me. Helps me control my weight and has increased the amount of ejaculate. Also urine is a lot clearer.
IMHO Peyronies Disease does not have anything to do with the amount of ejaculate we have. We tend not to drink enough water.
Jackp
Jack,
Happy Birthday!! I'm coming up on mine on the 17th.
Where did you find that information about cranberry juice? I think I'll give it a try.
I worked in the natural foods / supplements world for about 10 years & can absolutely support the use of cranberry juice (as well as plenty of good old aqua pura) to help with kidney function. While on the topic, I too am 67 & have been taking a saw palmetto & pygeum supplement for years & have never had any problem with my prostate. Much of what is sold in natural products is hype but, on the whole, you can't find a better preventative step. You won't usually find a "quick fix" as you might with prescription drugs but, over time, you can reduce or eliminate many problem areas.
Since we're talking cranberry juice, I might mention pomegranate juice, as well. Both my Dad and I have recently started drinking 8oz of "POM Wonderful" pomegranate juice after reading a lot of studies the company commissioned that show its juice to help with everything from prostate health to diabetes, artery blockage, erectile dysfunction and more. You might want to check it out. Unfortunatley, it's ridiculously expensive (like $10 for 48oz) because they're the only source of 100% pure pomegranate juice, but it tastes pretty good and I think it's worth trying.
Interestingly, my Dad has been diabetic for 30+ years and I am vigorously working to stave off diabetes myself, having learned that I have a blood sugar/glucose intollerance issue myself. So I stay away from fruit juice and when I saw POM Wonderful has something like 32g sugar per 8oz, I figured NO WAY. But strangely, for both my Dad and myself, we've monitored it closely and when taken with our evening meal, as recommended, it causes absolutely no rise in blood sugar whatsoever. Pretty neat, and it allows us to give this new "wonder juice" a try.
Nemo
Les
Kidney and prostate problems run in my family. I have known about cranberry juice for over 40 years. My dad's doctor put him on it and it helped lots.
I also take Saw Palmetto for my prostate. About 1996 or 97 I was having prostate infections and enlargement. After two TUPR's a year apart and on the Rx meds I did not like the side effects. After the last TURP I found out about Saw Palmetto and asked my urologist at the time. He told me, "Jack that is good stuff I take it myself. Get a good quality from a source like GNC." I did and threw away the Rx meds. Within 3 months my prostate was back to normal size.
I got a wild hair the first of 2008 and quit the Saw. When I had the ultrasound for my kidney stones the doctor said my prostate was starting to enlarge. He offered me a Rx which I refused. Told him I was going back on Saw. He said OK.
Jackp
"Why are so many men pre-occupied with dick size and cum loads?"
Looking at or watching porn and feeling inadequate. Forgetting that the porn stars are hired for just those reasons!
Tim
Tim
Size did not have anything to do with my post. Most men do not drink enough water instead they drink coffee, cola, power drinks, etc. This caused dehydration and we eliminate less bodily fluid.
Orange and citrus juice have an citric acid and it irritates the bladder and prostate in a lot of men. Cranberry juice does not have citiris acid but the same vitamin C as orange juice, it also has any anti infection property for the urinary tract.
When I feel a prostate infection or kidney stone attack coming on I double up on the cranberry juice and have a faster recovery.
Jackp
Same here.
I've just noticed that as I've gotten older, ejaculate quantity seems to vary a lot more. Just thought Jack's post on cranberry juice was interesting.
Quote from: skunkworks on October 03, 2009, 12:00:45 AM
Quote from: lwillisjr on October 02, 2009, 08:13:58 PM
Quote from: Sfabian on September 30, 2009, 05:54:17 PM
[I had a large bladder stone bothering me for about 3 years before I gave in 2 months ago to having it blasted away with laser surgery. About 7 or 8 months ago I noticed that my penis became curved on erection. Also, I noticed that upon ejaculation, it doesn't really shoot out. It just kind of of comes out a little delayed. It sounds like Peyronies's Disease. I did some groundwork and was wondering if anyone knows if Acetlyl L Carnetine is helpful. I'm 53 and perhaps this is natural for ejaculation at a certain age?
I don't believe that diminished ejaculation is associated with Peyronies Disease. I'm 53 and mine has also diminished somewhat over the years. For me it me it seems to have more to do with how much foreplay there is before climaxing.
It could well diminish the force of ejaculation though, as it has to go round a bend.
Had my annual meeting with my Men's Health guru doc, Romeo Mariano, in Monterey, CA yesterday. He'd been working on me for a year with diet, vitamin and supplement treatment to address adrenal fatigue, low energy, low frequency of nocturnal erections, etc. Mixed results so far, but I am definitely healthier for it - diet is good, irritible bowel resolved, etc. But one thing we've always discussed was my testosterone levels, which he wanted to see if we couldn't get up through a more holistic approach first. Not a lot of success in that regard. I'm 38 and in the last two years of measuring, my Testosterone has averaged in the 400s, while my Estradiol is averaging around 14. Both are considered low for a man of my age.
So ... Dr. M has now put me on Testosterone. I'll be injecting once a week, 100mg of Test Cypionate. I must admit, I'm a little scared, but it's something I've wanted to try for a couple years now, ever since I had my Uro check my Testosterone and it came back 235! He sluffed it off, but I knew that was way too low. Even in the 400s, I know I don't feel like I'm as healthy and energetic as I should be. So, we'll see. I'm a little worried about growing hair like Sasquatch and of course will be watching my prostate, but this literally (I hope) could be a turning point in life for me.
On another front, I asked him about Low Dose Naltroxen, but we didn't have time to get into it. I have both Peyronie's and Vitiligo, which are auto-immune, and he said we'd talk about it next time we talk by phone. He sounds like he'd be open to trying it (he's very open minded and receptive to off-label type things when he thinks they're warranted.)
I'll keep you posted.
Nemo
Hey George999,
Have you resumed treatment with topical camphor/Tiger Balm/Bengay Ultra and if so what are your results? Anyone else trying this?
Rockwall
Based upon the" peyronie's gel" that Ocelot556 got from a compounding pharmacy I compounded a small amount of EDTA and ALC with DMSO.
With a rubber glove I applied this concoction to my hand Dupreytren's and to the Peyronie's. I was a bit aggressive as I would apply and rub until it was absorbed repeatedly. My hand resembled a leather catchers mit and my penis wrinkled and burned. After healing a few days I then conservatively applied this thick compound until it just absorbed on it's own (about an hour) which was a better approach. I apply it to my hand daily and to my penis on alternate days or sometimes longer. It is doing something. I have also started infrared treatments on both areas 30 min daily and I believe it is helping.
I have had Peyronie's for about 15 years and DC for about 5 and have not seen much improvement to date. After a week and a half of this regimen along with VED after the hyperthermia treatment I am getting better erections. I am currently taking no oral supplements.
I hope this helps.
Rockwall
What form of hyperthermia treatment (infra-red lamp, etc) are you using specifically? Thanks, and good luck.
I purchased a 10-1/2" garage style aluminum light fixture with a clamp on the side and no on/off switch at Walmart for $10. It has a porcelain insert and is rated to 300 watts. I actually purchased two Infrared bulbs to better mimic what others were trying. One is a 250 Watt Philips heat lamp red at the Home Depot for $10 and the other is 150 Watt Nocturnal Infrared Heat Lamp from Petco for about $25. I just hold the lamp at different distances with the various bulbs. I don't know that one is superior to the other. Like Joshua said, I just hold it close enough so that it does not feel like it is burning me. I have been fairly aggressive with the heat(30 min duration) and have so far not experienced any burns, red skin, or anything except the skin is a bit wrinkly looking for about 10 min or so after treatment. I have only been doing this for about a week and a half but, I am pretty sure that I have not experienced any damage. I am no expert so be careful if you are going to try this. The Brazilian study is using 150 Watt bulb at 20 CM for example.
I should also explain that I place the subject in a andro stretcher and cover my legs, testicles, and glans with a thick towel.
Good Luck,
Rockwall
rockwall,
Are you measuring the temp.? There have been numerous warnings on the hyperthermia thread RE tissue damage at temps. higher than 105 F. I believe. However, it seems to me that one would know if damage is occuring. IOW, I would think there would be some pain (stinging, burning sensation) if tissue was being killed. Don't know for sure, but seems like common sense would tell you if your roasting your weiner.
Fred
Fred22,
No temperature measurement. I agree with you here about common sense. I hold the lamp close enough until it stings a bit and then I back it off some.
105 deg f causes irreversible cell damage. Really? I walked around all day in the Middle East when the ambient temp was 120 deg in the shade and I am still here. Have you ever warmed your hands by an open fire? I am pretty sure those temps are well above 105 deg which really is just warm and barely above normal body temp. I think your nerve system warns you about damage but maybe not with some types of heat such as microwave or certain types of radiation. So far I cannot detect any damage except what has been brought about by Peyronie's. This is just my opinion and I assume others may have a different and more knowledgeable opinion.
Rockwall.
Hello, i had peyronies back in 1999. for i went to doctor while in country, USA, to confirm. I also went through the pain period of several months with slight curvature, and lost my marriage for not getting some useful treatment or medical help. It appears there are shots that help, but frankly most that chatter was pitched in the early 2000s.
I did most of the lotions type experiments on my penis and wasted 5 years before stumbling on the alternative treatments by nature.
I think it is common knowledge now that arthritis relief comes not from doctors of medicine but specialists applying beestings in selected areas of stress. This beesting application is usually performed on hands or feet, specially finger joints. I have had bees for a hobby, and do not fear their sting much.
Well i started to have pains in my hands, thumbs and forefingers. And i began catching bees and stinging my finger joints. The sensitivity, after a few weeks of stinging, went down, and i increased the stings two per hand each other day. i did this for many months. With the pain and small lumps of grease, calcium matter or what ever you want to call it, i will call it the bloods method of patching --much like a bandaid.
It did not take long for me to realize, a finger is much like a penis-- an extension of special uses. And in the kitchen i stung one side muscle of my penis and jumped about form room to to room. But later used ice cube to reduce the sting of the bee toxin injected into my penis side muscle. This means the sting pasted the two skin membranes-- and injected its toxic formula into penis muscle. All males have two side muscle, so i stung the other muscle the next day. note avoid stinging the penis tip, or the finger tips within the finger print zones. Both are of no use getting stung anyway.
I have done this treatment for 6 months almost daily, one side muscle per day. I am still stinging my penis 1 every two weeks or so, but i have no calcium deposits within the penis. I am normal function, sexually, but for i waited 5 years the peyronies did its damage with my length.
Yes, there is a cure, a natures cure to peyronies, if you prefer the knife of the doctor or a few beestings. The sensitivity is the first task to do. how sensitive are you. the procedure is catch a bee and with pincer's sting your leg muscle or arm muscle. Id are muscle do the furthest from chest, the top of hand is okay place to start. If your hands swells and swelling goes half way up the arm, you are sensitive, and you need to bee sting one finger per hand, until no swelling of hand occurs, then and only then try to sting your penis, remember ice removes 90% of the pain.
Also, time the stinger is in the finger or penis is important. To start out 5 seconds seems a safe start, but i, after 5 years let the stingers in the penis a few minutes, and the finders 15 minutes or so. I can do two finger per hand each day if i want, but why do more.
the toxin of the bee coats the calcium patch, and any white blood cell will take both the pluck and the toxin-- for it can not separate the two anyway. so the blood puts the calcium patch or bandaid on the so called injured parts of body, your finger joints and penis muscles, and with beesting toxin contamination of the entire fingers, and penis, you get a free cleanup of the areas for free-- no doctor fees here!
Never sting the penis two times in the same day. also, the location of the sting is useful, since the penis is also in the body cavity, you need to sting at the base of the penis and near the tip or head -- but into the muscles only. I do not have much more to say, only i wish i had discovered this beesting relief sooner, could have saved my marriage. peyronies will never stop, and your beestings will never stop, a balance is required to keep the white blood cells from putting more bandaid patches of calcium on your fingers and penis.
i did not proof this text, and i am sure miss- spellings have occurred. please consider this information serious, and coming from one with 5 years experience with beestings t my body.
sincerely,
beesting
Oh boy.
This is why we can't have nice things.
beesting -
1) where can 1 get so many beed from
2) how did it cure your Peyronies Disease exactly
3) did it reduce your inflammation
4) did it reduce plaque??
5) what are you really saying about this
6) is there something that can simulate a bee sting - i mean theres no way im putting a bee on my dick - no fu**ing way man
I would be very wary of this. Each type of bee has a different venom. Pick the wrong venom and let's not think about the consequences. Plus if you might be allergic, I wouldn't recommend it.
And its painful!!!!!
What would be a good medication/ supplement to stimulate an erection?
dear Iceman,
i suspect many will reject this idea of beesting. And yes, not all bees are equal in venom. the German bees being the strongest. Even so, the control of the venom is via number of seconds while beesting is in the body. testing via below letter comments is typical in the pain treatment centers using beesting application to relieve arthritis victims, but few have any experience with penis injections. Advice is cheap, but my comments are from 500 injections of the penis and several thousands of beesting injections of the hands and fingers. I am live and well, and free of peyronies, and without selling the doctor's knives. I had the discomfort for 5 years, and became most disfunction. Today, 63 years of age, a retired technical engineer, worked in process labs most of my adult life within USA aircraft industry, i am free of peyronies discomforts and with normal sexual encounters. waht more can i ask. thank goodness for the common bee. Could anyone see stinging the penis with a hornet or wasp! Not me!
Yes, you get a bigger penis, in diameter only, but this is not the reason for getting beestings treatment anyway, only an added benefit to the final process of peyronies relief.
please note, Experience should always win out over opinion and untested comments of sideliner.
If you wish to go further, please see below attached comments, i will write two more process letters and then get out of your guys hair. A very nice website, keep it up and thank you.
Sincerely,
beesting
///////////////////////////
BEESTING TREATMENTS FOR PEYRONIES OF THE HAND
The purpose of this letter is to describe a simple method to stop, reverse, even repair the damages of peyronies. Of course, peyronies refers to discomforts of the penis, and hand discomforts mostly refer it to having arthritis. I believe that both these discomforts are of the same materials, calcium based patches to keep it simple, and that these patches are put in selected part's throughout the body via the immune system. In other words, arthritis and peyronies are related and both differ only in their specific locations placed within body by the immune system.
The first concern to treating discomforts of the hand, i.e. arthritis or calcium based patches, is to determine the patients sensitivity levels of beesting toxins. For this reason, the hand becomes the logical choice to test and evaluate beesting sensitivity levels.
If the patient has never been stung by a bee, not many of them in this day and age. The pain center technicians that treat arthritis via beestings, these specialists are located in most major or minor cities -- they know exactly how to test their patients for sensitivity to beesting toxins. In my opinion, logical test is arm or leg muscle, but fingers are the preferred choice. Why? Fingers are much like the penis, an appendage, but differ only with having knuckles and finger joints. The immune system typically target hands and feet and penis, in their never ending placement of patch throughout the body.
If the patients sensitivity is high, the penis injections via beestings must be delayed a few months. Normal swelling of the wrist, backhand and adjacent fingers is acceptable, when beestings are inserted in the finger or thumb joint. Swelling up the arm, as far as the elbow, is not acceptable. Also, the time the beesting is left in the finger joints is important. The longer time left, means more toxins are getting injected into the body. So to be safe the first injections should always be very short – a few seconds, 5 or 10 seconds at the most. Removal of beestings is via fingernail sliding across the skin to catch the beesting, and then flipping it outward from the body.
In time, the fingers and hand will be less sensitive to beestings, and the application of beestings to the penis can begin. If the patient is applying his/her beestings, they will become expert at the process in a few months. This beesting practice on the hand will make you perfect at injecting beestings directly into the body, and not just on the skin surface. It is important the beesting application get through the entire skin barrier to successfully inject toxins directly into the finger/thumb joints.
In the case of the beesting application to the penis, my next letter, the beesting must pass the skin and fat layers protecting the penis, but always directly into the two side muscles only. More on this subject next letter called, BEESTING TREATMENTS FOR ARTHRITIS OF THE PENIS.
The number of beesting injections must be one per hand in the beginning. Not more often then two fingers per hand over time. The swelling past the wrist is not acceptable, s reduce the number of injections per hand or less time the beesting is left within the finger joints. Over time, you will be able to leave the beestingers in the two fingers per hand for 10 to 15 minutes at a time. The weekly application could be every other day, but eventually a few times a week will be ample.
The immune system and its never ending patch placement is a slow process. The immune system places top priority to infections and beesting injections. This is good news, for the beesting toxin has an attraction for calcium based patches, and paints or invades this material completely. For this reason, the immune system removes the calcium based patches tanted with beesting toxins – it can not separate the two. This means the immune system removes the calcium patches it put there in the first place, only because they are contaminated with beesting toxins. I suspect the immune system repairs the surfaces the calcium patches where attached to, i.e., rejuvenated finger joints or penis muscles. Now that is good news.
In conclusion, the medical community has pain treatment centers everywhere. If you are not receptive to doing the business of beesting injection, yourself, there are plenty of experts that will assist your needs. If this is the case, i do suggest you copy all my letters sent to this important website. You can locate these letter via their internal search engine. Just place beesting, and you will get the few letters to copy and present your selected beesting therapist. It is very possible, many of these beesting specialists already know about peyronies relief via beesting injections to the penis. This would be great news to the peyronies suffers, who get nervous about seeing any doctor with scalpel.
this is experience of 5 years treatment by myself, i am a beekeeper hobbist, this is not 5 years of my opinion and untested comments. good luck
beesting
Old Man,
You say your Peyronie's is in an arrested state. How long has it been so and is this all due to VED therapy or have you been doing anything else to treat the Peyronie's?
Fred
I urge anyone following the bee sting posts to research the consequences of bee stings to those who are allergic to the venom. Persons with this allergy, known to them or not, could endanger their lives with bee stings.
Dear Angus,
I entitled the letter peyronies of the hand for a reason, and was stated why in my letter. I will write the next letter arthritis of the penis in a few days for the same reason. beesting treatments have been around for a long time, and it is not so painful as you fear it to be. Fear is always the best reason for avoiding, but unfounded fear is not. A simple ice cube releaves the beesting application process.
I am writing these procedure letters for a reason, to document them on the net, and to allow persons interested enough to look further into the beesting treatment clinics in their areas. Interested persons may simply copy my beesting letters on this important website -- and present them to the beesting specialists working in authorized clinics -- all will be informed enough to proceed with penis treatments.
Since i have performed these beesting treatments on my self for five years now, the current doses are only two beestings once every two weeks. This is enough venom injected in the area of the penis to keep the white blood cells busy enough to not be placing their calcium based patches too. If you can not control or reverse peyronies in your penis you WILL become disfunction, for the immune system in your body has selected your penis, and many other parts of your body for safe STORAGE of calcium based materials.
If beesting treatments are not for you, simply trash these comments about beestings, and go on with your selected medical treatments and their bills. I am not here to convince anyone about beesting treatments. Just remember these treatments have been going on for many years for arthritis sufferers, and that i have linked the two discomforts together as calcium based patches be it the hand, foot or the penis -- it is all the same materials used by the immune system.
I still say thanks to the honey bees! They give up their lives and toxins to give me relief from peyronies. With proper control for five years now, I do not need any medical doctors help, nor chatter their medical terms or jargon, nor receive their injections, nor get any medical bills in the mail. I think nature has provided a better alternate solution, for me. Fear of beestings is not a option, in my opinion.
Sincerely,
beesting
Quote from: beesting on November 26, 2009, 05:34:35 PM
If you can not control or reverse peyronies in your penis you WILL become disfunction, for the immune system in your body has selected your penis, and many other parts of your body for safe STORAGE of calcium based materials.
beesting,
You have stated in a couple of your posts that.....
If you can not control or reverse peyronies in your penis you WILL become disfunctionFor some people Peyronies Disease will simply be a nuisance due to a slight curvature. While in others it will cause pain and severe curvatures. I don't agree with your comment that everyone with Peyronies Disease will become dysfunctional.
Quote from: beesting on November 26, 2009, 05:34:35 PM
Dear Angus,
...... beesting treatments have been around for a long time, and it is not so painful as you fear it to be. Fear is always the best reason for avoiding, but unfounded fear is not. A simple ice cube releaves the beesting application process.....
....Sincerely,
beesting
My post said nothing of concern for pain from bee stings. My text stated concern about those who may have an allergic reaction to bee stings and not know of their allergy. Your posts generate much interest and much concern. I have first hand experience with what a bee sting allergic reaction can produce. Not everyone knows if they have this allergy or not. I appreciate your wanting to share what you believe to be a peyronies disease treatment, but I also wish you would have made at minimum a brief mention of the huge health risks of bee stings.
Sorry to change the subject but...just curious, has anyone ever tried acupuncture for Peyronies Disease? Not necessarily right on the trouble area, but basic acupuncture to stimulate overall healing processes? I have seen it mentioned as a possible therapy for Peyronies Disease on several sites. I have never done it, but have spoken with others who swear by its healing properties.
Quote from: Old Man on November 26, 2009, 03:06:16 PM
Fred22:
My first encounter with Peyronies Disease started with a bad sexual experience at the age of 24. The resulting injury was that my shaft was literally broken at the mid point of the shaft.
I cannot recount all the therapies, treatments and including 45 3 minute X-ray bombardments of my Peyronies Disease area on the shaft. Until I started on the modified VED therapy that my uro and I developed for the one cylinder Osbon Esteem VED, there seemed to be no solution for my symptoms. None of the things that were tried helped.
After prostate surgery in 1995 which left me totally impotent the VED was prescribed by my uro. The VED did the most good and today, I have no visible defects or any that can be felt through examining the entire shaft. I still use the VED therapy three or four time a week just for maintenance. These exercises seems to keep my penis healthy and able to get erections with the VED. I can get natural erections by manual stimulation, but have to use a retainer ring to hold them long enough for sex.
I have been free of Peyronies Disease symptoms for 14 years now.
Old Man
Old Man,
Did you develop plaques, dents, etc, in your penis and did the VED therapy resolve those issues? How bad was your curvature and how long did it take to resolve this?
Hello Generals with many stars on hanging off their shoulders,
i will not be able to get these stars you currently have, for i am new. I just do not have the time to pitch beesting and peyronies much longer. Frankly, you generals are just too over whelming to allow any new or old ideas relating to beestings and peyronies to enter this website in a respectful manner.
Each person must take their own trail, they will pay for going the wrong trails they take and only benefit for taking the right trails taken -- Frankly speaking -- are you really sure about all that peyronies relief so called proclaimed?
If so, Please ask those penile implant patients that lost their penis due to failed surgical practices or infection or complete rejection. These persons, about 5% to 10% of the disfunctional patients are without penis right now. FRANKLY SPEAKING, What do you say to these spent patients of so called expert doctors? Is penis-a-less acceptable end path?
But for me, a simple honey bee sting, a few weeks apart is a far cry from doing medial shots, experiencing doctor knives of all kinds, nor post operation routines of heavy weights hanging the penis downward, so it does not withdraw completely within body-- and all the after surgery problems none of the website practicing penile implant surgery.
I hope you guys do not beat me up so much, until i get the last two letters printed on this website of importance. What you 3 or 5 start generals say to us new visitors of the website, yes you are directly responsible for moving these new visitors into the greedy grasps of doctors and medical shots of questionable value or worth.
Each of you generals of stars many -- well you can tell use frankly all of the degree of maintenance you must do to stay stable with peyronies, put please tell us the number of needles, visits to numerous doctors and your failed results too. We need to see the both sides, yes or no.
I will only make one more letter, in a few days, and get out of this groups hair. I thank more the keymaster, then the general chatters within.
sincerely,
beesting
Quote from: Old Man on November 27, 2009, 11:15:15 AM
Fred:
My history is posted all over the forum in the various threads/topics, but I will try to summarize some answers to your questions.
First, I must say that there have been several occurrences and re-occurrences of Peyronies Disease in the past 56 plus years since it first occurred at age 24. Many treatments/therapies were tried, but none gave any relief.
Now to answer your questions - Yes, I have plaque during the times of Peyronies Disease that were on either side, on the top side in various locations on the shaft. Each occurrence was in a different place. Some of the plaque left dents as they were gotten rid of and several dents even went away. At present, have no plaque or dents, just about the same size and shape as I was before Peyronies Disease.
The worst curves that I had at one time was a 45 degree downward and 45 degree to the right side. All of my symptoms came and went through continued use of the old Osbon Esteem one cylinder VED. My uro and I worked out a special routine of exercises with it that worked very well. This is posted in the VED board under the topic of one cylinder VED therapy as outlined by JackP. He did this therapy too before and after his implant surgery. You should read as many of his posts relative this as possible. He had great success with the VED therapy as well as myself.
Overall my VED therapy took the greater part of a year to produce the final results that I enjoy today - NO Peyronies Disease!!
Hope the above helps in any way. Feel free to ask any and all questions you may have at any time.
Old Man
Thanks for the info and sorry for the inconvenience of having to post it all again. After I posted my questions, I realized that I could have just gone to the "Histories" thread. It's very encouraging to me that you achieved such positive results with VED therapy. I plan on ordering the Vitality from Fitzz very soon and beginning the 26 week protocol. Thanks again for your patience.
Fred
Quote from: beesting on November 27, 2009, 02:21:45 PM
But for me, a simple honey bee sting,
BS,
Quit being inconsiderate to others on this forum.
Quit calling it a cure. Even if one stipulates to all of your proclamations, at the end of the argument, you have nothing more to offer than
another anecdotal story, no double blind research to back up your claims, and no cure.
Most of us have read this posting "template" before (ancient methods, cure, accuse others of being ignorant, insult others -- then have the nerve to complain about legitimate questions, and then leave).
CF
Quote from: beesting on November 27, 2009, 02:21:45 PM
beesting
We tend to be a cautious bunch here. The risks of treatments are often discussed as well as the benefits. Perhaps the issue here is that bee sting treatment is being pushed as some kind of panacea, with other treatments being demonised. A more sensible approach would've been to state the benefits you've seen from this treatment, the obvious risks that exist, and express less of an attitude of distrust towards established treatments, some of which have been shown both here and in a scientific setting to be effective. Your plan to post these five letetrs is okay by me though.
Reguarding Beestings letters about his therapy. I know all of us seasoned guys who have Peyronies Disease will take this with a grain or two of salt. Iam concerned for the new guys who are confused and new to being diagnosed with Peyronies Disease and are desperate and not quite well versed on the condition yet they may think this could be a viable ansewer for them.
Guys new to Peyronies Disease please don't try this treatment. This could be vary dangerous and harmful to your health as well as your penis. Do your research and try the main stream treatments that are available here and from your doctors. If you do not know or need help trying to figure out treatments to help you please ask Iam sure any of us in the same boat would be more then glad to help you out and direct you in the right direction.
Woodman
I hope that anyone who has read about the recent "Bee Sting" therapy understands that this can be a very dangerous procedure for someone who may be allergic to bee venom. While we are all looking for that "silver bullet" fix to Peyronies Disease, this is one person's account of what they believe worked for them. While bee venom has been used with limited success for arthritis, it is done under very specific oversight of a doctor and not a hobbyist beekeeper stinging him or herself.
With that being said, the user "beesting" has stated his experience and there is no other data or studies to substantiate this any further. I'm not trying to discredit beesting, and appreciate the input. But I don't see this going any further. It is one person's account. I only sense this degrading into a senseless debate at this point with no data to substantiate on either side.
To beesting.......
Thanks for the input. But you are coming across as this is the only sure fire cure and the rest of us are idiots for not trying it. I also don't care for the comments about us sending everyone to a surgeon's knife. If you have read anything on this forum you would clearly understand that this is not the case. We all hate this disease, and we are all on our personal journey to find a cure. And we seek help and support along the way.
So thank you for you comments and I'm happy for you. But some of your statements are not correct. And as a forum moderator please heed this warning. There is no need for any more letters from yourself stating your success with bee venom. We understand. And please no more remarks about 5-star generals, or implying we are crazy for not running out to find bees to sting ourselves with. While your English is good, it is evident it is not your first language. So my apologies if we are losing something in the cultural exchange here. But some of your comments are condescending and simply won't be tolerated.
You are welcome to read and express your opinion. I'm not trying to be mean. But if you keep pushing the bee venom thing, or keep making condescending remarks, we will ban your account. Simple.
hi guys,
i've been away for a year or so and just happened to log-in the other day to find serendipitously, someone posting on BVT which, as an open-minded person and a bee-keeper myself, is a subject i'm VERY interested in. both in general, and particularly for my peyronies.
i went back and read beesting's posts and the ensuing responses with much disappointment. you guys do i'm sorry to say, sound like a closed-minded group.
as lwillisjr points out, english is obviously not this guy's first language and there is, it seems, something lost in the "cultural exchange". what troubles me, is that instead of direction and guidance from you guys, i see mostly jokes, triteness, dismissals, and then ultimately the "warnings" of censure when someone exacerbated by your coldness becomes frustrated and "cocky". i've witnessed this same scenario in the past with folk who don't express themselves well in english.
though this is a Great forum for which i'm very greatful, and which has been Incredibly helpful to me, (a shout out to Old Man and Tim), this is an area that i feel, could use some attention.
in his first post beesting points out that if there's a question as to your sensitivity to bee venom, run a test on part of your body farthest from your heart, and suggests the back of the hand. this is not such a "crazy" thing. as i see it, it's no more of a "dangerous procedure" than any of the dozens/hundreds of other "treatments" that we've all tried and/or, are still practicing on our selves. (stand outside a hospital's emergency room entrance or your local drugstore before you sting "your Hand" if you're worried).
my wife and i've been keeping bees for over twenty years. (we have three hives at the moment). i get stung all the time, it always hurts, and i still occasionally curse. over the years i've stung myself intentionally many times on my arthritic fingers and wrists, and for a period my bum shoulder. it's not difficult and you can easily control how much venom is allowed to enter your body. based on my non-scientific observations over the years, i won't say that it's the silver bullet and i won't say it didn't help. have i stung my crooked and deformed dick? No. Would i if i had more information and knew for sure it wouldn't fall-off... or my patches of plaque worsen? Yes. absolutely, and i would keep detailed figures and notes and share all.
i want to think that beestings condescending remarks are partly a result of, and are directed more at the medical community at large which i think (Dr. Tim excluded) we all have issues with. i certainly do!!
lwllllsjr, and others (with all the stars :)) : please. could we hear beesting out and try to determine if there's any viable data or science within his experience?
i propose we create a BVT topic board, separate from "alternative treatments" that i think would, one: add an element of seriousness to the subject, and two: eliminate a lot of the dismissive chatter, and our own "condescendtion" towards the subject. and, most importantly of course, it might lead to more information and possibly enlightenment.
before i logged-out last time, i'd brought up BVT for peyronies and received mostly humor.. but sometime later i saw i'd received a personal message from a fellow who was working in China and was up on BVT (which is used more widely there), and was going to investigate it's potential for his peyronies. i responded right away, but to my disappointment, never heard back from him. maybe his penis fell off and he died, or maybe it straightened beautifully and grew in girth and length and he's a happy camper now, but we may never know because he was obviously intimidated by our sight and only addressed me before he headed back to the far east. to my mind, this is or was, potentially valuable information that we lost.
beesting: if you're still with us, know that i'm interested in BVT and your experience, and you can write to me personally on my message board. what i would suggest to you here, is first read-up on how we measure and calibrate our disease from its progression to its stabilization, and in the best of all possible worlds, its demise, (or improvement). and secondly, though i commend you, it is a little hard to read your english. is there someone you trust who could possibly edit and improve the english in your posts. i feel you would be better received here.
here's to a straighter, less painful new year.. cheers, and my best to all of you, ar
AR,
Thanks and appreciate the post. Sorry if I came across harshly to Bee Sting. What I was (and still am) concerned about is that he implied we were all stupid and crazy if we didn't try BVT. I'm not in a position to support or dismiss it at this point. Clearly you are experienced with dealing with bees and understand the risks. Bee Sting was pushing this as a sure fire silver bullet therapy, and my fear was that the untrained person would read and possibly try this without the proper precautions. I've researched facts stating that roughly 40 people per year die from a bee venom, and that 3% of the adult population will experience an anaphylaxis reaction. I think we need more supportive evidence of BVT and Peyronies Disease.
Quote from: AR on January 04, 2010, 08:05:14 PM
... you guys do i'm sorry to say, sound like a closed-minded group.
... as lwillisjr points out, english is obviously not this guy's first language and there is, it seems, something lost in the "cultural exchange".
AR,
I understand what you're saying about an open discussion of alternative treatments, and it appears to me that this forum encourages discussion of any.
I couldn't disagree with you more about the "closed-minded" comment.
IMO, the poster's use of the English language is excellent and clearly communicated his opinions about our forum, its members, and current treatments.
CF
Quote from: AR on January 04, 2010, 08:05:14 PM
i propose we create a BVT topic board, separate from "alternative treatments" that i think would, one: add an element of seriousness to the subject, and two: eliminate a lot of the dismissive chatter, and our own "condescendtion" towards the subject. and, most importantly of course, it might lead to more information and possibly enlightenment.
Considering hyperthermia does not have its own board, despite having actual studies backing it up, I cannot see how bee venom could possibly warrant its own board.
The bee venom poster in question was pushy and insulting (as lwillisjr noted). The treatment he was pushing is not backed up with medical studies and it could be dangerous to those with bee allergies. I guess that makes me close minded when it comes to offensive posting behavior and dubious treatments. Guilty as charged.
-Skjald
p.s. any advancements in Peyronie's treatments are going to be born out of good science and hard work, not an instant message from someone in an internet forum.
Quote from: AR on January 04, 2010, 08:05:14 PM
What troubles me, is that instead of direction and guidance from you guys, i see mostly jokes, triteness, dismissals, and then ultimately the "warnings" of censure when someone exacerbated by your coldness becomes frustrated and "cocky". i've witnessed this same scenario in the past with others.
And I too have witnessed the same trite dismissive bad behavior also. This group and the moderator can be very petty. I have seen hawk ban good members because of his own personal petty reasons...shame! I have seen tim do google searches and wrongfully accuse members of being ballet enthusiasts...oh shame again.
I am very open to beestings posts. I have known for years that bee keepers have less incidence of arthritus. I am not going to get myself repeatedly stung but I might think of trying a supplement such as royal jelly.
Let's face it, there is absolutely no other treatment suggested here that will cure your cronic tunica albugenia fibrosis. Skjaldborg, member george has suggested a battery of supplements over the years, none of which he takes himself and none of which will stop your tunica fibrosis. I guess that puts george in the same category as beesting. Skjaldborg, you are guilty as charged also.
Lancaster,
I don't think Hawk bans users for personal petty reasons. In fact, I think Hawk has much better things to do with his time. This is after all, an internet forum. We don't know each other and we probably will never know each other on a personal level. Therefore, I think this argument you make is without merit.
I think the point that the other forum members made regarding the bee venom posts are twofold. One, beestings are extremely dangerous, especially on a level mentioned by the poster of the beesting cure. There is a ton of work to be done regarding any treatment since there is no scientific data, control groups, etc. Two, this forum continues to grow and survive after several years. This is because forum members continue to post legitimate topics and threads. Compare that to other internet medical forums and all you will find is garbage, spam, and ridiculous posts from people that have nothing better to do with their time.
If you would like to offer substantive discussion on Peyronie's Disease, it is welcomed. There are many sufferers and although not too many people post on this forum, plenty of people read it on a daily basis.
Quote from: chiguy on January 18, 2010, 07:13:20 PM
I don't think Hawk bans users for personal petty reasons.
If you would like to offer substantive discussion on Peyronie's Disease, it is welcomed.
Oh, hawk has had his moments of pettiness.
And chiguy, if you yourself would like to offer substantive discussion on tunica fibrosis how about you
do some research and get back to us on this issue https://www.peyroniesforum.net/index.php/topic,1063.0.html (https://www.peyroniesforum.net/index.php/topic,1063.0.html)
-thank you
@Lancaster,
Your argument is a bit muddled in that George is not disparaging or offensive when he suggests various supplements to other members. The bee sting poster, on the other hand, used ad hominem attacks to belittle anyone who did not agree with him. To my knowledge, the supplements George suggests have been proven SAFE for other purposes, unlike bee stings, which have not.
Also, there's nothing unethical about recommending treatment one hasn't personally tried. I don't use VED or viagra but I recommend that users new to this forum ask their urologists (or other forum members) about these treatment options because they have been proven safe and effective for other people. Many members will recommend surgery if someone has severe symptoms, although they may not have had surgery themselves.
This forum is one of the better-run sites I have seen precisely because it is well moderated. I am closed minded when it comes to posters pushing clearly dubious treatments (treatments that have no medical studies purporting beneficial treatment of anything) because they do a disservice to those who visit this forum seeking information.
Best,
Skjald
First let me correct a distortion Skjaldborg just made. Lancaster did not suggest george is disparaging or offensive when george suggests various supplements. Lancaster discussed two separate issues, neatly discussed in three paragraphs. I was able to differentiate the two issues. Skjaldborg you got your issues crossed or you distorted intentionally and that touches on the original issue of pettyness and triteness. And Lancasters second issue was the myriad anecdotal supplements that keep getting resurrected here.
After finding this forum today I decided to join. I have read numerous posts by george. Most of his herb and spices and a few esoteric supplements are anecdotaly effective. But perhaps taken all together they can have some anti fibrotic effect. I doubt it though.
We need real medicine not mickey mouse supplements. I salute george and others for their daily research and daily posting of real "effective" treatments for fibrosis not localized in the penis. But I think your time would be better spent sending your research to research labs that are affiliated with men's urology issues. To wit; I found good research being done with idiopathic pulmonary fibrosis that increases mmps. I forwarded the research papers to a local university and basically asked them to ride the "coat tails" of the successful lung fibrosis treatment by transferring the application to penile fibrosis. I got a positive response back and now I am at the front of the list, when they open up trials. My unit may fall off before that happens but hey, I am at the front of the line all the same. I also got a positive response from a research lab in NC doing work increasing i(nos) expression. I peruse clinicaltrials.gov and centerwatch.com for key words like MMPs, fibrosis, long term NO donors, cytokines, you get the point. Then I compile what I need to and send that along to Dr. Levine, Dr. Munnarez, Dr. Carson, universities, hospitals etc. I easily find out who is on their research team for men's urinary health and I c.c. them also. I have respectfully gotten good feedback and I expect my activity will one day start a penile fibrosis trial using the same resources tried for cardiac fibrosis or pulmonary fibrosis etc. I would strongly encourage everyone here to be more vocal in this manner instead of perpetuating petty posts.
Lancaster, I am in Boston, and we have a doctor here who does the treatment you questioned about. I will comment on that in you steroid post. I can see tim now, looking up my ip address to verify I am in MA. Gotta poke fun at tim's ballet detective work.
A suggestion to all that are letting this degenerate into personal attacks and name-calling: please read the "Read This First" section at the top of this forum. The rules of the forum are listed there numerically. These are not suggestions on how to behave: they are rules. Conduct yourselves as gentlemen, please.
In the spirit of disclosure, my name is Theodore R. Herazy, DC and I have operated the Peyronie's Disease Institute website since 2002. This is a website devoted to a detailed discussion of Alternative Medicine treatment of Peyronies Disease, using a synergistic group of therapies that are available for purchase on this site. The initial concepts and practical steps for non-drug and non-surgical treatment of the man who has Peyronies Disease were based on my own investigation and the thinking of three MDs with whom I was practicing when I developed Peyronies Disease and subsequently treated myself successfully.
I was just recently made aware of the below post that referenced my website and a small private research project I completed in 2008, and thought it would be good to address the issues he raised. I have communicated with this forum Administrator who approved that I respond to that post. Thank you for the opportunity to address this audience concerning this forum post.
Quote from: Hawk on April 11, 2009, 04:55:04 PM
This statement just makes me roll my eyes ::) QuoteThis video presents detailed instructions to stretch and improve the six basic types of Peyronies Disease deformities:
1. Twist
2. Curve
3. Bend
4. Dent (also called a ding, depression, or hinge)
5. Hourglass
6. Bottleneck
Further, additional information is included that explains how to successfully stretch a combination of distortions, since very often two or more penis distortions appear together.
Assuming manipulating one's penis could improve it (which is a huge assumption),
It is not an assumption. Soft tissues of the body when abnormally contracted can be stretched and, hence, improved. Therapeutic soft tissue stretching has been done for thousands of years – it was just never applied to Peyronie's disease until I did it.
Begin with the fact that the lesion of Peyronies Disease is a soft tissue structure containing collagen, fibrin, and elastic tissue fibers, of similar composition as other soft tissue structures (tendons, ligaments, fascia and organ matrix). These structures are capable of contraction and therefore they can also be influenced to stretch. Soft tissue responds to lineal traction force when it is correctly applied, sometimes at a surprisingly fast rate. In fact, physical therapists spend great time and effort stretching surface scars that occur after surgery or trauma to lengthen them, as well as internal scars referred to as adhesions. Soft tissue stretching is successfully performed by doctors to increase distance between compressed spinal vertebrae, as well as on burn units, post-surgically in bladder repair, bone grafting and breast augmentation, many forms of cosmetic surgery, as well as ballerinas, athletes and contortionists. Professional body builders spend a lot of time stretching soft tissues. Anyone who has used a VED (although I do not advocate it for Peyronies Disease), knows that it can temporarily stretch penile tissue. African women who wish to create the illusion of a longer neck will stretch the neck and shoulder soft tissues to lengthen their soft tissue.
The PDI gentle manual method to stretch the Peyronies Disease lesion is totally different from the concept of the mechanical penis stretching devices that are heavily promoted. Unlike the mechanical penis stretchers that can cause injury to the penile tissue, sometimes starting or worsening Peyronies Disease, gentle manual penis stretching cannot harm the penis when done as instructed. The only "force" used is about an ounce – extremely small; so small that one of the difficulties encountered in teaching this technique is to have the user lighten his contact touch so that he does not create defensive resistance to the lengthening process within the scar tissue.
Lastly, I want to make sure you and your forum readers do not make the PDI gentle manual penis stretching method something that it is not. I am concerned that you are viewing this stretching method as a solo therapy, just as the mechanical penis stretchers are advertised as a solo therapy. This is not the case with the stretching method I developed. It is not intended to be used alone to help Peyronies Disease, just as none of the therapies on the PDI website are recommended to be used alone.
The basic idea behind the PDI therapy concept is the use of multiple therapies to enhance therapeutic synergy – "ganging up" on the problem with multiple therapies. This is what was done when the PDI gentle manual penis stretching method was developed. All 10 men in our work group were using other therapies in addition to the stretching method. What was noted as a result of including the stretching technique into their existing plans was that their results were noticeably increased in eight of the 10 cases; the two men who did not see good improvement were not using aggressive therapies; the eight who got added benefit by including the PDI stretching method were using aggressive therapies. Using multiple therapies is not good research, I know, but I am not a researcher and I notify people on the website I am not doing research. I am interested in helping people who have Peyronies Disease to get better, and I think I can do that outside the format of formal research. My readers either accept that idea, or they do not.
Quotewhere would one even begin to get the knowledge on how to manipulate these various deformities and combinations successfully ???
Graston, Barnes, Upledger, Hammer, McAtee, etc. are just a few of the many educators in the general area of soft tissue stretching, who have lectured for decades to a worldwide medical audience. Detailed knowledge, experience, and technical training concerning soft tissue stretching and lengthening are readily and widely available within the broad world of physical therapy, osteopathic medicine, chiropractic, physiatry, and sports medicine. Perhaps you were unaware of this wide universe of information within the healing arts that relate to soft tissue manipulation.
The idea and basic technique to safely and gently stretch the Peyronies Disease scar had to start with someone, so I must answer that the original idea of soft tissue manipulation started with me. Perhaps I am the pioneer in this area of gentle manual Peyronie's scar stretching you ask about. But I only built upon a larger body of experience and knowledge from people far smarter than I.
QuoteThere are no pioneers to build on, no such research.
Not so. Refer to the previous answer. There are hundreds of research papers and texts that document the efficacy of soft tissue manipulation and stretching. However, none of this information was previously applied to the penis in Peyronies Disease, until I made that step. Does that make it automatically impossible or false? I think not.
Many medical discoveries and innovations are made by taking well known information about "A" and applying it to a new situation like "B," if there is reasonable reason to do so. That is all that I did. It was really a simple and easy idea to develop once it occurred to me. After explaining this concept, many people comment that it makes a lot of sense to them. This is the hallmark of a good idea – it seems pretty simple and obvious once it is presented.
Where did I get the idea? Forty-one years of practice experience; many hundreds of hours of post-graduate training and education; successful personal treatment of my own Peyronies Disease; common sense, ingenuity and a little luck applied to basic anatomy and physiology; and, desperately looking for answers and different synergistic therapy concepts to help all the men I communicate with 365 days a year for the last eight years. Many therapeutic concepts and advancements that are currently endorsed and accepted by the medical community started outside it, although they were initially rejected and castigated because they did not originate from the "right" source. My gentle manual penis stretching idea might be one of them – time will tell.
QuoteDid he try several methods with dozens of patients for each method and fail?
A complete explanation is available on the PDI website.
Concerning the size of this study: I am currently in discussion with the urology department of a leading U.S. medical school to investigate another therapy that is applicable to Peyronie's disease treatment The medical director of that institution suggested for the pilot study that we use 10 randomly chosen men with Peyronies Disease. For my pilot study I worked with 10 randomly chosen men. You see, ten is an acceptable number of subjects in the early stages of research. Additional information about my guidelines and protocol are presented at that link that Believer gave in his original post. No one – certainly not me – has ever said I conduct classic research like a multimillion dollar university or a multibillion dollar pharmaceutical conglomerate. All I have ever said is that I will leave the formal research to others who are capable of performing on that level, and I will attempt to put together ideas and information from existing published research, as well as my own knowledge, training, experience and ingenuity, to find what helps the Peyronies Disease of men who choose to participate. No guarantees can be offered, and there can never to a promise of "cure."
Within the PDI concept a man attempts to initiate a healing response by rehabilitating his tissue using a wide variety of synergistic Alternative Medicine therapies. As we point out on the PDI website, "We do not attempt to treat the Peyronies Disease scar, we attempt to rehabilitate the man who has the Peyronies Disease scar so he is better able to heal it." Every man who has ever been diagnosed with Peyronie's disease was told by his MD to come back in six months to determine if his problem has cleared up – meaning, healed. Everyone understands that the Peyronies Disease scar goes away on its own – heals – in a percentage of cases. The PDI treatment concept is to do all that is possible to make sure each man heals his Peyronies Disease scar to the best of his ability. This is the basis of what is explained in detail on the PDI site.
The gentle manual penis stretching technique is a part of that effort to promote natural tissue repair and healing; manual stretching is not all that is suggested, and it is not all that can be done to promote scar repair. This overview for recovery from Peyronies Disease is a world of difference that separates the standard medical approach and the Alternative Medicine approach of PDI.
QuoteDid he just have the gods of penis health smile down upon him so he got right on the first attempt what has elluded mankind for several hundred years?
Who said I got it "right on the first attempt?" I never said that; I never wrote that anywhere. Those are not my words, but your own.
QuoteWhat percent of patients respond, 100% ???
I think it is safe to say that no drug, medical technique or procedure used to treat any medical problem has even shown to be 100% successful. Viagra works for only 60-75% of men. Aspirin and Ex-Lax and insulin do not work for everyone. A simple shot of Novocain from the dentist does not work 100% of the time. None of the drugs used to treat Peyronie's disease (verapamil, POTABA, cholchicine, etc.) work 100% of the time – most of them far, far from 100%.
QuoteDid he use objective measurements to verify the results ???
Yes, to the extent that was possible. Just as pain is not objective, but subjective, not everything studied in the medical area can be studied objectively. I did the best I could under the circumstances I find myself – and the men with Peyronies Disease who find me. The alternative would be to do nothing. There is currently too much "nothing" being done for Peyronies Disease.
Is it better to do the best you can and work within certain reasonable limitations, or to do nothing and make no contribution to the body of Peyronies Disease knowledge and therapy? I chose to do the best I can under the circumstances of having limited funds and reliance on limited access and unreliable cooperation from a worldwide community of men with Peyronies Disease.
My efforts and the results of men who use the PDI concepts are not perfect, but nothing in life is 100%. We are pleased with good progress with many cases of Peyronies Disease who use the PDI concepts.
QuoteIf so why aren't the particulars of that data displayed in large bold flashing print ???
The results and data are prominently reported on the website as follows:
"Of the 10 men participating in our research project:
8 – saw moderate to significant improvement of curvature,
2 – saw no progress with their curvature, and
10 – (100%) saw moderate to marked improvement of sexual ability"
QuoteHas he even met enough Peyronies Disease patients in person during his life-time to comprise a decent study assuming he had the design criteria for such a study ???
I do not know what a "decent" number of Peyronie's disease patients are.
In my early years practicing in holistic medical clinics I encountered men with Peyronies Disease periodically, but none of the MDs or I had much to offer them. It was only after I developed my own Peyronies Disease that I threw myself into the subject for my own selfish reasons. Since 2002 I have almost exclusively worked with Peyronies Disease cases from around the world. I consult with 6-12 men daily via phone and email concerning Alternative Medicine treatment to increase their ability to heal and repair the Peyronies Disease lesion.
Because I am conducting an Alternative Medicine website intended for men who are currently under the care of a medical doctor – a stipulation we make consistently throughout the PDI website – it is not necessary that I examine or diagnose each case. When men come to me in the PDI website, they are already diagnosed.
My first contact with most men I work with is through my book, "Peyronie's Disease Handbook." This book presents a wide array of information to increase the odds of recovery from Peyronies Disease, but none is more important than teaching men how to determine the size, shape, density and surface quality of each scar they have. Each man is instructed how to document this vital data for his own use; it is not necessary or practical that I personally do so. Subsequently, I spend considerable time and effort answering questions about Peyronies Disease care from around the world. This is how I make contact with thousands of men with Peyronies Disease.
In using Alternative Medicine the treatment effort is focused not to the condition, but to the individual needs of the person who has the condition to facilitate the best healing response can occur. My purpose and effort is spent teaching men how to become an expert in their own personal condition to enable them to effectively manage their own Alternative Medicine rehabilitation. If this can be accomplished then the body should demonstrate an increased ability to heal the Peyronies Disease, just as every MD hopes will happen during the initial six months of waiting.
One of the reasons that men with Peyronies Disease are so distraught with their current state of affairs is that there is so little medical help available to them. This is so because it has been put into our heads by the drug industry that we must wait for the drug industry to conduct multimillion dollar studies to save us from Peyronies Disease. But, their research is slow and generally not forthcoming, and essentially non-existent for Alternative Medicine treatment because of its low profit potential. I have worked with far too many men who speak of suicide because of their Peyronies Disease, or contemplate penis amputation because of multiple surgeries that have gone bad, or families that are ruined – because they fail to recognize that there are additional options available other than drugs and surgery.
The body is designed to heal itself. Some cancers heal without medicine. Broken bones, pneumonia and tuberculosis can heal without medicine. Why should it seem so impossible or crazy that a man can heal his own Peyronies Disease? All MDs know that the body can heal Peyronies Disease, right? If not, then what is "come back in six months and we will see if your Peyronies Disease goes away" all about? When a man has his Peyronies Disease just go away during that first 6-12 months that is an example of the body healing the Peyronies Disease scar, right? A lucky percent of men have their Peyronies Disease just go away without doing anything about it. That is why MDs tell men to return later to see if the Peyronies Disease did not just spontaneously resolve – heal – itself. For this reason my direct contact and intervention is not what Alternative Medicine treatment is all about. A medical doctor who prescribes drugs or contemplates surgery certainly needs to have his/her patient in the office; my work is different.
The goal of the PDI concept is both simple and complex: To discover what a man must do to boost his immune response to encourage his Peyronies Disease to heal. With this idea in mind, my PDI website advocates various synergistic methods to determine if it is possible to help men heal their own Peyronies Disease scar. This can be done in a long distance situation with the owner of the Peyronies Disease scar in control of his situation, not me.
QuoteDoes he just assume this might work, and if so why didn't he clearly state that :-\
I state my case clearly in my website. For a review of the information concerning theory, philosophy and methods for Alternative Medicine treatment of Peyronie's disease, as well as information about the gentle manual penis stretching method, I invite you to visit the Peyronie's Disease Institute website. The gentle manual penis stretching method I developed is just one small part of the overall approach a man can use to help his body heal his Peyronies Disease problem.
Because Peyronie's disease is such a complex and tenacious problem to treat it is necessary, in my experience, to use a wide variety of therapies to address the sluggish immune response from as many different angles and levels as possible – all at the same time. PDI does not present magic cures and guaranteed results, only hard work and extended therapy to stimulate and support a healing response that takes time and reinforcement to complete.
QuoteThe entire thing just leaves me shaking my head !
I hope this information helps. TRH
Two questions:
What does it mean that you "subsequently treated myself successfully"? (no more curvature, plaque,etc?) and
How could anyone who has suffered from this disease try to profit from it? (ie, why not tell us all on this site how to try to help each other - that's what people do here. Could your withholding helpful information be considered aiding and abetting suicide?)
"After finding this forum today I decided to join."
and
"I can see tim now, looking up my ip address to verify I am in MA. Gotta poke fun at tim's ballet detective work."
Right....
BostonBlacky
If you are someone who has come back and are here again, then say it. If you are new, you picked a couple of buried and esoteric things to comment on! Other than noting that you were obviously a former member returning, I could not care less who you are. But it is of interest that you are not honest at the outset. It also appears that you have an axe to grind.
Hohum
TRH,
Thank you for coming here.
I think the principal context in which you are viewed is as someone trying to make a buck, and when that appears to be the starting point, all the rest starts to become suspicious.
Of course, one could say that about anything - a scientist publishing in a peer reviewed journal is trying to get promoted, or a better grant. And so on.
But there is a theme of grandiosity in your claims that is only somewhat tempered by your post here, which does not read as much like an ad for the lottery, as do your website claims.
The Central Limit Theorem of statistics suggests an answer to the dilemma we discuss here.
Ten men is not enough - and this is the central dilemma faced in such research. The next ten men might end up with totally different results, and this is the result to many, many promising theories and practices advocated in the past (ie vitamin E, interferon, etc).
So your ideas may make sense, but that does not make them either correct or even close.
And my son is "in discussion" with his English teacher regarding his unfinished homework - according to him. But he is still grounded until it's done.
In a word, one cannot sell or advocate a treatment without having proved it works and expect to get praised here unequivocally or without both criticism and some cynicism.
Tim
Greetings ohno,
In answer to your questions:
Quote from: ohno on January 20, 2010, 06:03:32 PM
Two questions:
What does it mean that you "subsequently treated myself successfully"? (no more curvature, plaque,etc?)
Yes, I treated myself with Alternative Medicine concepts and eventually all three scars were absorbed and my compound distortion of 35 degrees to the left, 10 degrees up with a counterclockwise torque was eliminated. Since that time I have no remnants of Peyronie's disease.
QuoteHow could anyone who has suffered from this disease try to profit from it? (ie, why not tell us all on this site how to try to help each other - that's what people do here. Could your withholding helpful information be considered aiding and abetting suicide?)
I suppose the answer is for the same reason that you must earn a living by being paid for the work you do. I have chosen to earn a living telling people about using Alternative Medicine to beat their Peyronies Disease.
If a urologist developed Peyronies Disease, and had a surgeon do a Nesbit procedure on him, would you then expect that urologist to not charge for the Nesbit surgeries he did from that point forward? I think not.
In your last comment you suggest I am withholding information about Peyronies Disease treatment. Each day of the last eight years I have spent a great amount of time, effort and money to explain in detail how I was able to help myself resolve my Peyronies Disease problem, as well as offer help to those who wish to attempt to do the same. Detailed treatment information is freely available to anyone who wants to visit my website, sign up for my monthly newsletter, or read my blog. Each day men use my toll-free number to call from around the world wanting information about their Peyronies Disease treatment; these phone calls last from five minutes to an hour. Each day I write many long and detailed email replies and blog posts to Peyronies Disease questions. I do not change anyone for the hundreds of hours I spend each year offering personal consultations to the many Peyronies Disease men and women in need.
Even though you might not have come across any of my information before now, I have been involved with spreading the word about Alternative Medicine Peyronies Disease treatment for many years. On a daily basis I address an audience of people who wish to use a non-drug and non-surgical approach to Peyronie's disease. The only reason I submitted a post to the Peyronie's Disease Society was to expand upon a few points brought up by Hawk that I thought needed correction and clarification; he was kind enough to allow me to do so.
No one who ever asked me a question through my website, newsletter or forum, or read my books, could possibly accuse me of withholding my thoughts and opinions about Peyronie's disease treatment. TRH
Has anyone on this board ever utilized Dr. Herazy's treatments and if so, was the program successful?
Greetings Old Man,
Thank you for your thoughtful inquiry about my opinion of the VED. I realize there can be a difference of opinion amongst well-intended people. I am not presenting this information to you as a statement of absolute truth about Peyronies Disease treatment, because at this point there doesn't seem to be any. I only wish to present my reasons based on my personal and professional experiences, training and education.
Quote from: Old Man on January 20, 2010, 10:32:30 PM
TRH:
Would you care to explain further why you do not recommend treatment/therapy using the VED?
I have had Peyronies Disease for over 56 years now, tried just about any and everything throughout those years up to and including topical X-ray treatments (45 to be exact) with no results.
After introduction of the VED after a radical prostatectomy in 1995, the VED was RXd for the resulting impotency due to non nerve sparing surgery (not available at that time). After a year of a protocol that my uro and I worked out, the Peyronies Disease disappeared and it is now in remission.
I work with that local urological group by demonstrating use of the VED for Peyronies Disease with some of their patients. So far, there has been remarkable results with these men. VED therapy is a safe and viable method of therapy for Peyronies Disease if it is done with common sense and caution to preclude any further trauma.
So, please elaborate a bit more on why you do not see fit to recommend VED therapy for Peyronies Disease.
There are several reasons I hold this opinion to not advocate the use of the VED for Peyronie's disease:
1. Many men over the years have written and told me they directly trace their Peyronies Disease back to use of a VED. This is not necessarily from repeated use (although I have reports of that, also), but from a single use of the VED. These men state they did not overuse or abuse the device. Afterward the penis was either bruised or painful, or both, and soon thereafter they demonstrated telltale signs and symptoms, and were diagnosed with Peyronies Disease.
Although it does happen, I do not hear of many people who are pleased with VED results; from my experience, most people report no benefit or a negative experience of some type. Part of this one-sided report I know is simply because the men who like the VED and benefit from it do not come to my website looking for alternatives. I suppose it is the same way that men who use Alternative Medicine successfully, and have recovered from Peyronies Disease to the best of their ability, no longer visit forums such as this one. Only those with poor responses continue to look for answers that might eventually lead them to discuss their problems with me.
2. You offered your opinion that the VED is safe "if it is done with common sense and caution to preclude any further trauma." That is just the reason, in my opinion, the VED is unsafe. No VED user can tell ahead of time, with any reasonable degree of certainty or expectation, the level of vacuum force that is safe or unsafe until it is too late. This would be like saying, "Nitroglycerine is safe if you do not shake it up too much." Well, what is too much shaking of nitroglycerine, and what is too much VED vacuum force on a penis? You won't know until you do damage. Increased safety with the VED demands a decreased vacuum force, resulting in reduction of any potential effectiveness. My opinion is that most men would want to be as aggressive as possible if the idea behind the VED is to stretch the tissue within. This is where the problems can start.
3. This next reason is actually related, but different from, your same statement given above that "VED therapy is a safe and viable method of therapy for Peyronies disease if it is done with common sense." I am a man. I know how this is, as we all do. Men are often driven by urges and instincts that blind us from common sense when it comes to our genitals. We see evidence of this in our politicians, business leaders, church leaders, teachers, entertainers, and sports stars and perhaps under our own roof, that men do not use a lot of common sense or restraint – or hardly any – when it comes to their penis.
Why would Tiger Wood go catting around with scores of hookers and less beautiful women, and eventually risk the most lucrative and enjoyable sports career ever developed, when he is married to a Swedish model, the mother of his child? It is my observation that this frequent lack of common sense and restraint in regard to sex and the penis is what drives men to use the VED to the excess that eventually injures the tissue. Sure, the VED maker will warn about the dangers of overuse and abuse. But when a man looks down to see himself looking larger than he has ever been in his life, I believe it is far too easy for most men to get carried away and overuse the VED. I have heard these stories over and over. Some get away without injury that results in Peyronies Disease, and others do not. To my mind, it is not worth the risk, especially when you keep 4. in mind, next.
4. A few years back I was communicating heavily with the good people who make the Osbon SommaCorrect Vacuum Erection Device. They market their VED as an erectile dysfunction device and wanted to market it also as a Peyronies Disease treatment device. They needed some positive medical research to support that claim, so they were doing research with, as I best recall, the University of Michigan School of Medicine. I was monitoring that study because, if successful, it would make me rethink my position about the use of the VED for Peyronies Disease. I was also interested because it would open the door to include their particular VED as part of the Peyronie's Disease Institute lineup of Alternative Medicine therapies. Bottom line: The study was abandoned because of poor outcomes and the report of some injury.
5. Since a VED stretches all tissue within the vacuum, it can damage the veins of the penis, such as the deep and superficial dorsal penile vein. This can happen if the valves of any veins are distorted in the stretching process. As a result it is possible they will not close properly, causing a mild or severe, local or area-wide, reduction of the ability to become erect. (I believe this is the reason the notorious porn legend, Johnny Wad Holmes, owner of a massive penis, could not develop an erection that could be inserted easily. It was not necessarily that he was too large, but that he was too soft. He had to guide and coax his member into place, lubricating himself with saliva from his fingers to help it in. In many scenes his frustration with himself is visible. Rumors are that many of the close-up shots of intercourse in his movies were a stunt double.) So, even if the VED helps develop a kielbasa size organ, there is a serious risk it would have difficulty becoming erect.
6. When used conservatively, the VED will develop only a partial semi-hard erection at best. Attempting to insert or have active intercourse with a partial erection is dangerous for anyone – and could be a total catastrophe for a man with Peyronies Disease. The problem is that a partial erection is essentially weak and unstable, leading to the potential for buckling and sudden bending during the rigors of active sex. This sudden bending is how many cases of Peyronies Disease begin; if a man already has Peyronies Disease this could easily aggravate an already bad situation.
7. Take a thick rubber band, and cut out a small part of it in the middle so that you now have a thin section between the two thicker sections. Now, what happens when you pull on that rubber band? Most – if not all – of the stretch that occurs in this modified rubber band will occur in the thinner, weaker part. The thicker uncut portion will not stretch because the thinner part participates almost completely in the stretching action. This is also why paper towels and stamps will tear along the perforation. What does this have to do with the VED? A lot. The scars of a penis with Peyronies Disease are fibrous and dense when compared to the other normal penile tissue. This is why bending and all kinds of distortion occur when a man with Peyronies Disease develops an erection – the scar tissue does not stretch as the rest of the penile tissues. So in this way, the scar is thicker and less flexible, and the normal healthy penile tissue by comparison is more thin and flexible – just as in the rubber band mentioned above.
When a VED – or a mechanical penis stretcher – attempts to stretch the penis and the Peyronies Disease scar that might be present within it, in my opinion, it is only healthy and normally flexible tissue that will participate in the stretch and not the thicker and less flexible scar materials. It is my further opinion that the only tissue being stretched by the VED – or the mechanical penis stretchers – is healthy non-Peyronies Disease tissue. If this were not the case, then paper towels and postage stamps would not tear at their perforations. I believe this is simple physics in action, and the explanation for the old saying, "A chain will break at its weakest link." After using the VED – or a mechanical penis stretcher – you might have a larger organ, but it will still have Peyronies Disease scars within it because the more flexible tissues will always absorb the energy of the stretch before the fibrous tissues are able to participate.
8. Of the many MDs who have consulted with me over the years about how to treat their own Peyronies Disease, I have never had one who said he used a VED. I think this is perhaps a weak reason, but it is still an interesting observation.
I hope this explains my reasons for my opinion about using a VED for Peyronie's disease. I am grateful to read your reasons you believe in the use of the VED, as you do. While I know there are men who say they benefit from the VED, I suppose I am lead to my position by a different series of experiences and information.
QuoteAlso, did your study include more than the ten men you mention in your post?
The small study we did to refine the manual penis stretching concept was with only ten men. Part of the reason I felt that ten men was an adequate number of volunteers in this case was because we were not starting with a brand new idea. We were only attempting to see if the proven information and standard soft tissue techniques could be applied to a new area for a new problem – and it seemed to work. The idea that soft tissue can be stretched using a very gentle traction "force" is well-known and established within the field of manual therapy. Applying these concepts and techniques to Peyronie's disease was just a small side-step. Since the results were generally favorable, there was no reason for more review.
Since offering the stretching video about a year ago, many men are now using the concept of gentle manual penis stretching. Because these basic concepts and techniques were fairly well developed during that original work, only a few men have offered subsequent ideas for improvement or additional refinement of the technique. As such, this treatment concept continues to be refined and improved over time, and has shown to be a good additional tool in our kit.
Thank you for helping Peyronies Disease men with your VED work. I am sure you are very gratified you can provide that kind of assistance.
I am sorry to hear of your prolonged and extensive search for help with your Peyronies Disease. It is wonderful that you are still in the fight for recovery. I applaud you, Young Man, er, Old Man.
Dr. Herazy
Dr. Herazy, I note that you also own the domain dupuytrens-contracture.com so I assume you're the founder of the "Dupuytren's Contracture Institute" (although no actual names appear on that site). Have you also cured yourself of Dupuytren's, using some combination of the products being sold through that site - such as this bundle, priced at $510.52:
- Integral E 400/400 (60)
- Gamma E 500 (60)
- Topical Vitamin E Oil
- Fundamental Sulfur (100)
- Nattokinase 1500 (120)
- Fibrozym (100)
- Dusa-Sal DMSO Gel (4 oz)
- Scar-X (1 oz)
- PABA 500 (100)
- Quercetin-Bromelain (100)
- Genesen Pointers
dr herazy - I reckon that you are a total rip off merchant peddling the same BS lines across all your marketing material - across your websites + now on this site - mate ive used the VED and its been great - I stopped using the VED over Xmas as I was overseas and did notice that the difference in size and curvature when I came back and resumed my VED usage - I have bought some of your BS waste of money products and zip happened v- you are a total FU**ing leachg mate!!
Be honest for once - the only reason you knock the VED is because you DONT SELL the ved - blind freddy can see this!!
OK so my advise to you mr herazy ( cause your aint no doc) is to go back to that hole you crawled out of keep your tin pot sales spiel to yourself - and if I ever hear from you again Im personally going to fly to the states and kick your front teeth in!!!
Dr Herazy,
1) You do charge a lot of money for A) items available for a lot less money (ie vitamin E) and B) of completely unproven efficacy (I.e. nattokinase).
2) You have now heard from an MD who uses the VED (me).
3) Regarding your arguments about the VED, I used to believe most of them as well. In particular, the issue of where the stretching is applied, and hence where the change occurs. However, if the stretch is differentially applied to the normal tissue and it thus becomes longer or of greater girth and the scar does not, the net effect is still straightening. In my case, straightening with a dent (where the scar is). In my book, that is still better than a 45 degree curve. It makes for good debate, but the effect is still the same.
As hokey as it is (it is just a starting point, not a religious dogma), the use of three cylinders is important. I personally think that the narrow cylinder, which effectively applies a longitudinal stretch to the penis, is the most important.
Overuse or abuse of the VED leading to Peyronie's is documented in the literature. The pressures applied (when written up in the medical literature) are amazingly high. Perhaps common sense is not common - I agree with you about the ways men make mistakes when it relates to the penis.
Finally - Old Man has found a successful way to deal with his Peyronies Disease. I am not so sure that he is still "in the fight for recovery". I think it might be better to say, "Isn't it grand that you found a pathway to recovery and are willing to share it with others"
"For free", I would add.
Tim
My mailbox is now open again - thanks for letting me know it was full.
I have tried traction as well as the VED and found that the VED worked well enough (though not perfectly) and the traction - for me - caused a little trauma at the "pinch point" where the sling attached. I have used two different devices types for traction and found both to be too cumbersome for me to make time for.
Tim
Has anyone tried Dr. Herazy's stretching method? If so, does it work?
Thanks in advance.
Zeppo.
I have been using it for about 6 months; I honestly don't think it helped much, if any.
I started the 3 cylinder VED 2 weeks ago and it seems to be helping already.
As everyone else has warned(mainly Old Man), be VERY careful when you start and don't over pump the vacuum pressure. And, don't use soap and/or shampoo as a lubricate. It will cause skin irratation. I wet my penis and scrotum with warm water and then apply plenty of KY.
GS
Several questions arise when an alternative cure for Peyronie's is introduced: why haven't we heard of this before? Is it so novel and unorthodox so as to blindside the medical establishment? I believe the principle of Occam's Razor helps answer this question, which favors the simplest hypothesis that still answers the question.
Regarding (Dr.?) Herazy's treatment, if a simple and effective cure for Peyronie's existed, be it pharmacological or physical in nature, we would already know about it. No breakthrough cure would go under the radar because such treatments are actively sought by established medical professionals who have a thorough understanding of the physiological aspects of the disease. Some very talented people are working on Peyronie's disease right now, some are even dedicating their academic and professional careers on it such as Dr. Lue and Dr. Levine, so it stands to reason that any cure that did exist would be known by these people due to their extensive familiarity with the disease.
Some might argue that the medical establishment would rather contrive an expensive therapy for their own monetary benefit. While this is possible given the greedy and predatory nature of man, it is unlikely because a cure for Peyronie's disease is not destined to be a blockbuster drug given that relatively few men ever get the disease. Furthermore, any truly simple treatment would not be patentable and thus very difficult to monetize effectively.
Lastly, although the world can be a bitter and terrible place (a world in fact where a young and healthy man in his 30s such as myself will get an incurable and painful disease that deforms his penis) I still believe that the doctors I have visited hold true to the Hippocratic Oath in treating me to the best of their ability. I find it highly unlikely that any of the doctors I have seen would withhold a truly breakthrough treatment from me for their own gain if they did know of its existence.
Therefore, a simple and easy breakthrough cure for Peyronie's Disease does not exist.
Skjald
Oh my! How could I have missed such a fascinating string of posts that have broken out on this thread over the past few weeks? Even Dr Herazy has shown up! Will wonders never cease? And along the way we have the bizarre solutions typical of this AT thread plus the critics of more conventional solutions. The stew is piping hot!
While all of this makes for great drama and entertainment, lets not forget the stuff that works.
1) A lot of guys here have confirmed that the VED works for them. That is pretty good evidence that it does work for at least some people.
2) A lot of guys here have noted a degree of benefit from Pentoxifylline. I am one of them. Additionally Drs Lue, Levine and others recommend Pentoxifylline.
3) A growing number of guys are reporting benefits from traction. And Dr Levine and others recommend it.
So lets make it clear that if you want something with some evidence behind it that is available now, the above are it. Lets also be clear that none of the above are likely to cure your Peyronie's, although I suspect someone just starting with Peyronie's *might* be able to achieve a cure IF they catch it quickly enough.
On the other hand, pretty much everything posted on this thread are shot in the dark stuff. They may work and they may not. Likely they may not. They may be safe and they may not. Caveat Emptor ;). And ... They may work for some, but not for others :'(. Better luck next time!
I have used a lot of supplements since I have had Peyronie's, including a number I actually purchased directly from Dr Herazy. I never felt "ripped off" by Dr Herazy, but I never felt that I achieved significant benefit from any of his treatments either. I can say that at least some of the products he sells on his site are very good products and the price he charges for them is reasonable. EVERY supplement I myself have suggested on this forum is, with a few very rare exceptions, is one I have tried myself. And every rare exception I have tried to make it clear that I myself had not used it. EVERYTHING I ever stated I was using, I WAS using. And I have done my best to report back on the percieved success or lack of. I have even gone to the point of editing my prior posts with new information (without deleting anything) to clarify things.
I honestly believe that many of the supplements I have used HAVE been helpful for my Peyronie's. No one gives credit to the level of benefit that blocks progression to whatever degree, but I call that a benefit. But NO supplement I have ever taken has helped me to the extent that Pentoxifylline has. That is the honest truth. ALC is the ONLY supplement that comes close.
I believe very deeply that the root cause of Peyronie's is metabolic. Additionally, I believe that underlying metabolic problem can and does produce more fibrotic disorders as time progesses. So I believe it is important not only to treat Peyronie's itself with things like the above three known beneficial treatments, but also to attempt to treat the underlying metabolic disorder. This is why I advocate things like checking and optimizing serum Vitamin D levels and using Low Dose Naltrexone, all under the supervision and guidance of a physician. Both are known to work at a very deep level on normalizing immune system function. There are new studies on Vitamin D appearing on an almost daily basis and all are positive. There is a worldwide peoples movement on behalf of Low Dose Naltrexone due to the benefits people are receiving from it AND multiple positive initial studies demonstrating benefit from it. Both Vitamin D and Low Dose Naltrexone relate to inflammation and auto-immunity. Both are inexpensive and totally safe when used under medical supervision.
And of course, in the future there are things like Xiaflex and perhaps drugs like Pirfenidone.
For all its faults, thanks to guys like Hawk and Tim, this forum is the number one best source for information on how to deal effectively with Peyronie's. But its messy and there are no simple solutions. Most of the guys who come here to snipe and snap are just bitter over the fact that no one can offer them a simple solution. So they berate their doctors, they berate the researchers, and eventually they come here and berate us. They are furious because they tried something they read about here and it "didn't work". They make it sound like we were promoting it as a sure solution. In reality, nothing could be further from the truth. Everything presented here is vetted by the group. Anyone who comes here and pulls a recommendation out of its context of surrounding comments and posts is a fool. And unfortunately, rather than ending it there, they sometimes come back again and make a fool of themselves with their own tirading rants.
- George
I would just add to Skjald's comments this:
When a cure is found for Peyronie's you will know about it here. Continually guys are recommending potential treatments on this site. Invariably, when any possible treatment is suggested, multiple guys usually try it. That is how desperate we are for something that works in this very large community. Anything that provides benefit will light up this forum and spread like wildfire. You can count on that. The reason nothing has lit up this forum so far is simply because nothing has ever been suggested that has proven capable of curing Peyronie's. NOTHING. There are things that help, and because this forum is so large and diverse, those things become common knowledge quickly in this community. That's reality folks! - George
PS - Dr. Herazy is indeed a doctor. However he is a chiropractic doctor which would imply that his professional expertize in dealing with Peyronie's would be limited whether he would admit that or not.
Quote from: Skjaldborg on February 01, 2010, 12:27:58 PM
Therefore, a simple and easy breakthrough cure for Peyronie's Disease does not exist.
Skjald
I agree with your premise, but I would slightly modify your conclusion to read " . . . a
known cure for Peyronie's Disease does not exist,
notwithstanding evidence that some treatments may reduce or eliminate an individual's Peyronie's Disease symptoms."
CF
I am very interested in the focus of your post.
I m sure that your post will definitely be of help to many people.
Nice Stuff.I'm looking forward to reading more from you.
Maybe this should be in the VED section...
One can use soap as a lubricant if done during a shower or bath - I do this almost every night. However, it is important to rinse it off very thoroughly to avoid rashes. Also it is absolutely important to trim hair or to shave NOT just before applying the VED as the microscopic cuts from the razor will favor a folliculitis or rash formation. I shave right afterwards to stay trimmed for a better seal - it is fine the next day.
Tim
Tim,
As you said, this should probably be in the VED section but since you posted here I'll go ahead. I got the Fitzz 3 cylinder model just before Xmas and have attempted initiating the 26 week protocol a couple of times. However, after about 3 days each time I've had to stop due to an increase in discomfort/pain. We've discussed my history before and, as you know, pain is one of my major issues (going on 4 years with varying degrees of mild to excruciating pain). I've been very careful not to overpump but as soon as I get any significant stretch it gets very uncomfortable. Can you offer any suggestions/insight regarding this problem? For example, I'm not sure how much of a stretch I should be trying to achieve at this point or how many times I should pump, how long to wait between cycles, etc. Can you give me a rough idea of the best way to "ease into" this therapy, because I really want to give it a chance. Do you think VED therapy is useful in reducing inflammation? I'd appreciate any advice you can offer. Thanks.
Fred
Fred,
We are all different. I do know that when I am "active" it hurts when I pump, and I adjust my technique a bit. This may help for you too.
I sit in the tub in hot water - I like a hot bath and I am not concerned with reducing my sperm count. I do think that this may make it easier to stretch, based on objective measurements of length made while stretching (I always get an extra 1/4 to 1/2 inch of length when I stretch this way - I do not know if that is 'better' though).
After sitting for a while (ie 5-10 minutes), I stand up and soap up. Standing makes it easier by far to use a VED than lying down. I apply a moderate vaccum with the hand pump. At this time (before my penis is really engorged yet) it is much easier to pull scrotum into the VED. I hold it out with the edge of my left hand, and also use a mild "milking action" with the VED. At this time, I frequently break the seal by accident - no big deal, just reseat it and pump up again. If the seal does not break by accident, I usually release quickly - usually within 5 seconds.
This initial pumping is allowing the penis to adjust and inflate - it does not happen instantly! But as you gradually get fuller, the base part starts to seat better and it is not so easy for the scrotum to be pulled in (less room since the penis is now fatter). At this point if I break a seal and take the VED off, I look very full but am certainly not hard or erect. I now pump to a desired pressure. Using a gauge, I personally pump in the A cylinder to about 180 - 200 mm Hg negative pressure. However, for others, this may be too much. Given your history, I might start at a lower pressure like 100 mm Hg negative pressure. For the C cylinder (I rarely use the B cylinder any more since many more weeks than 26 have now passed me by!), I use a lower pressure. The reason I use a higher pressure in the A cylinder, is that the pressure should be applied only to the head and is essentially pulling it out away from the body, with the penis constrained in the tube. In the C cylinder the pressure is being applied to the sides of the penis and it just feels like too much - and it leads to formation of edema in the soft tissue of skin.
I hold the pressure (using the A cylinder) for probably five minutes, then release and re-pump in about 20 seconds.
Others here will release the pressure much sooner (i.e. every 20-30 seconds) and repump after a 10 second wait. Obviously, there is no "best" way to do this. For you, I would start with shorter times at full pressure, and then see if that helps the pain, if not then switch to longer times. (I could create an rationale for either being "better" - more fresh blood is better; versus less fussing around and ups and downs might be better)
When I have pumped to the desired pressure, I am lazy so I sit back down and relax in the tub. When the penis has been stretched out a bit, it is much easier to release pressure and repump it while lying down (unless you wait too long - ie more than 1-2 minutes).
Fred, if you have a nerve going right through a plaque it may be really hard to do any of this without pain. I hope this helps give you ideas that do help.
Tim
Thanks, Tim. Helpful information. I'm going to try to get back into it soon as the pain has subsided some in the last few days. Can't use mine in the tub though because I have the Fitzz 3 cylinder and I'm pretty sure it's not a good idea to get water in the pump. Thanks again.
Fred
Quote from: Tim468 on January 22, 2010, 09:48:36 PM
"After finding this forum today I decided to join."
and
"I can see tim now, looking up my ip address to verify I am in MA. Gotta poke fun at tim's ballet detective work."
BostonBlacky
Quote
If you are someone who has come back and are here again, then say it. If you are new, you picked a couple of buried and esoteric things to comment on! Other than noting that you were obviously a former member returning, I could not care less who you are. But it is of interest that you are not honest at the outset. It also appears that you have an axe to grind.
Hohum
-Tim
What? What? and What, again? Tim, give yourself a rest from the ballet detective work.
-Have a good weekend
This member banned for creating a spam account.
Dear Lancaster,
No detective work - just common sense. Someone comes to the forum for the "first time" and makes a comment about a dialog I had months earlier that was buried in the middle of another thread, and then makes the comment virtually hidden by changing the font to a small font.
Does it seem reasonable that a newcomer would say that? Or notice that? Or do that?
No, I thought you'd see that too.
For you, and the "newcomer" named BostonBlacky (who has a sort of familiar tone as he talks about how important it is to get high end research going), I do not engage in "detective work" (ballet or otherwise). I, like others, cannot help but pay attention to the world around him, so I notice stuff. Sometimes, I am interested enough to look into it further (and so I found other posts on other fora by a person who had come here to flame a bit)(or maybe it was someone else - who gives a damn?).
But you can rest assured that I am no longer interested enough in Boston Blacky to "investigate him" or to look up his IP of origin, etc. You might even note that I am no longer an Administrator here (and so I do not have access to posters' IP addresses as I used to have).
Although I understand Old Man's frustration at your posting this post, I think more of his frustration is directed at a sort of negative tone in what you say (often, not always). I tried to ask you about that, but you do not really come here, it seems, to engage in dialog. Instead, you come now and then, make a bunch of brief posts (generally negative about therapies that "don't work) and then leave - no responses to the replies or the comments engendered by your posts.
It might work better here if you engaged in dialog - just a thought.
Tim
Lancaster - what are you saying?? - that pentox is a waste - so what else can you offer - please let me know as Ive been on the pentox for 2 years and I dont want to continue using this if you think its a waste of time
thanks in advance
Quote from: Iceman on February 28, 2010, 07:34:33 PM
Lancaster - what are you saying?? - that pentox is a waste - so what else can you offer - please let me know as Ive been on the pentox for 2 years and I dont want to continue using this if you think its a waste of time
thanks in advance
Iceman wake up. Pentox has studies backing it. Lancaster is some random in a forum.
I am using PABA now and it is so much cheaper than POTABA. I will let you know if it seems to be effective used with vitamin E.
Does anyone have any info on PABA?
I was told I could take pentox but the Dr's had so many qualifiers conneted to it's use like, "It sometimes works for some men, some of the time." I turned it down.
Quote from: skunkworks on March 01, 2010, 01:07:25 AM
Quote from: Iceman on February 28, 2010, 07:34:33 PM
Lancaster - what are you saying?? - that pentox is a waste - so what else can you offer - please let me know as Ive been on the pentox for 2 years and I dont want to continue using this if you think its a waste of time
thanks in advance
Iceman wake up. Pentox has studies backing it. Lancaster is some random in a forum.
What kind of site is this. Who is this guy old man typing in all caps and picking a fight. I came here to get good information. Can't you men use private messaging for your gossip and conspiracy theories.
Quote from: Old Man on February 27, 2010, 07:40:53 PM
Lancaster:
GIVE IT A REST!! TAKE YOUR DRIVAL SOMEWHERE IT WOULD BE APPRECIATED + IT DEFINITELY IS NOT WELCOME HERE. EITHER CLEAN UP YOUR ACT OR YOU WILL BE GONE! THIS IS NOT A THREAT, JUST FOR YOUR INFORMATION. I DON'T USUALLY LET GUYS LIKE YOU GET MY SKIN (MY SKIN IS AS THICK AS AN ELEPHANT) AND YOU ARE NOT EITHER, SO BE FOREWARNED ABOUT CASTIGATING MEMBERS ON THIS FORUM WILL NOT BE TOLERATED!!
Old Man
This site is one where posts can be made about Peyronies Disease and discussions had about the subject; this is a site where rules are easily found on the home page. This is a site where these rules are expected to be followed. Those who flame and launch personal attacks against the membership will be banned (Lancaster).
There are plenty of message boards where men do not have to act and talk like gentlemen... this is not one of those sites.
Sunny Sky, Old Man is a long-term well-respected member of this forum. He has also endured being flamed many times on this forum by men who couldn't conduct themselves as gentlemen and have a civil discussion on this message board. If you had read this board and past threads and messages you would know this. Please read past threads and messages for a better understanding of the board.
Welcome to the board, Sunny, but please use discretion with your words in posts.
I will not allow flame posts to get started here or anywhere else on this board.
Guys,
This may have been covered, but I couldn't find it on the forum.
My hormone replacement doctor wants me to use a DHT topical gel on my penis as therapy. My research on the internet shows DHT as a penis enlargement hormone, but I don't find anything related to Peyronies.
Can someone point me in the right direction?
GS
Some of the relationships were more successful than others as far as penetration & sexual fulfillment. However, I have NEVER encountered a woman who ridiculed or teased or even mostly cared what the state of my penis was. Its a problem of confidence more than anything.
Some men have mild bends and penetration is not much of a problem. When a man has a bend that makes penetration impossible you can still have a sex life but far from the norm. As being married for over 35 year, peyronies has taken a toll on our relationship. If I had a 25 deg. bend I would concider myself cured. Medical treatment is financial out of the question. Mental pain for both partners is almost unbearable. So not being concerned that one does not have a perfect penis is not the issue for guys is my condition. If I were in a position to look for a new relationship, the only woman that would have interest in me would be one that need the house repaired or some other needs. Yes be happy if your condition still allows you to have a love life but concider the ones that can't. Musicman
GS,
This is an interesting thing for your DR. to suggest. I am convinced that at 23 I developed Peyronie's Disease due to short term use of Propecia, which inhibits DHT to prevent hair loss.
I am convinced if I can find a DR who will work with me on androgen/DHT replacement my body would correct itself - unfortunately, most of the Uro's I meet have no interest whatsoever in even considering that a 26 year old's ED and Peyronies Disease are related to low androgens.
Please keep us updated on if you begin this treatment and how it works for you!
My urologist started me on daily topical testosterone gel (Testim) a few months ago when the testosterone level came back under 300. This was more for ED than peyronies. That said, I believe weak erections can lead to injuries which result in plaque formation. Also, infrequent and weak erections result in less than optimum healthy penile tissue.
My initial favorable response faded. It appears at least some of the additional testosterone might be converting to an estrogen (estradiol - E2). I hope to find out if that is true soon, and address that. Until I can get a definitive test, I am taking OTC Resveratrol and Quercetin, both aromatase inhibitors. I'll stop them a week or so before my next doctor visit.
Quote from: ocelot556 on April 08, 2010, 06:09:21 PM
I am convinced if I can find a DR who will work with me on androgen/DHT replacement my body would correct itself - unfortunately, most of the Uro's I meet have no interest whatsoever in even considering that a 26 year old's ED and Peyronies Disease are related to low androgens.
BrooksBro,
I don't think there is any doubt that a less than hard erection can be dangerous when having intercourse, especially with Peyronies. To be safe, I use 20mgs. of Viagra for intercourse. I buy the 100 mg dosage and just bite off a small piece each time. It's less expensive that way.
As far as the testosterone gel is concerned,the way I am understanding it, DHT gel can't be converted to estrogen the way testosterone gel can. You may want to research that and let us know what you think.
To compound my problem, I have BPH along with Peyronies, so my concern with the DHT gel is that is could cause more enlargement of my prostate. I can't have that, even if it helps my Peyronies. I'm reading a lot of conflicting reports on DHT and the prostate via the internet. Any help on this issue would be appreciated.
Gs
Guys,
I started the DHT gel therapy on Monday. It took a while to get the DHT gel. Based on my research, the DHT gel should help with erections and help to enlarge my penis and it should not cause any problems with my BPH symptoms. I am using the DHT gel in conjunction with the VED, of which I'm in my 17th week.
So far I haven't noticed anything different, but , like the VED, it's a long term therapy.
If you are interested in getting information on the internet, goggle "doctors opinions of DHT gel". That way, you'll get a lot less penis enlargement websites.
GS
Dr Herazy, thanks for your painstakingly well writ posts and the work you are doing on Peyronies Disease. Motivated now to try gentle massage, starting tonite. Kind of don't think it'll work, but ...long as it don't hurt me. I believe that you are sincerely trying to help men with Peyronies Disease. Thank you again.
There is no treatments, other than blood thinners?
where is the surgery where are the charaties? for all we know it it could account for 20 percent of suicides around the world yet the dont speak up
this disease needs to be addressed
cheers
Mark
Quote from: GS on May 21, 2010, 11:11:27 AM
Guys,
I started the DHT gel therapy on Monday. It took a while to get the DHT gel. Based on my research, the DHT gel should help with erections and help to enlarge my penis and it should not cause any problems with my BPH symptoms. I am using the DHT gel in conjunction with the VED, of which I'm in my 17th week.
So far I haven't noticed anything different, but , like the VED, it's a long term therapy.
If you are interested in getting information on the internet, goggle "doctors opinions of DHT gel". That way, you'll get a lot less penis enlargement websites.
GS
I'm sorryto hear that good luck to a cure my friend
I have already realiswed there is no cure, your better off living life living life in danger who care ablut anything now :)
cheers Mark
There is a remedy a cure or procedure to give resolve to this infliction. It just is not here yet.All we can do is keep reaching and working on awareness and movement for our cause.
How we go about it and how we are heard is going to say much about us .We cannot be weak and angry.Yes it will be a challenge but who better to fight for it than Peyronie's suffers.
So for now you have to suck it up and be a man and live with what ever life brings you like the rest of us.
Fubar
you have to be positive - keep reading the threads here and start on pentox - i only think about it avey other day now and not every minute....
People often do have surgery to treat peyronie's. Of course it depends on the extent and stage on the condition. Pentox is thought to be useful. Other drugs and supplements may help, but it's hard to tell, as very few people try new strategies. VED, traction and so can be useful. I totally agree that more needs to be done, but there are ways to at least try to work at dealing with this mess.
We must stay positive...
I went in for my 6 month check up with my Uro and he mentioned again that Vitamin E does more harm then good. He said it's been shown in studies that large doses of Vit E can cause strokes and other heart issues. The normal dose you get in a multi-vitamin is just fine. My doc also reduced my Pentox from 1200 mg day to 800 mg because recent studies are showing that lower doses of Pentox seem to be working better then higher doses.
As far as new drugs on the horizon he mentioned Collagemase is showing promising results for helping to break down scare tissues in animals. It could be a year before they try an injection form on humans but hopefully it will work on Peyronies. This product is currently being used as topical treatment for external use only. FYI, my doc in Seattle studied under Tom Lue in SF.
GermanIrish
COLLAGENASE (kohl LAH jen ace) is an enzyme that breaks down collagen in damaged tissue and helps healthy tissue to grow. It may help wounds heal faster.
I have read some posts about the PAV cocktail. Which urologists have recommended this combination, are there any studies about it, and what dosage of Viagra and L-arginine was recommended?
Snowy,
I believe Dr. Levine was a big supporter and pusher of the PAV cocktail, hes from Chicago. I also believe the daily dosage for viagra was one pill per day. And the L Arginine was either 800 or 1200 MG. They come in capsules of 400, so it would be 2 or 3 per day. If you search the forum I'm sure we've discussed this in the past somewhere on this board.
Comebackid
Quote from: grayling on February 17, 2011, 03:33:14 PM
Your surgeon is obligated legally to tell you certain things about the penile implant device, like you will lose your natural ability to get an erection, and there could be serious side effects such as infection.
The surgery is guaranteed to make your penis shorter. Read other posts to find out how much. Testimonies range up to three inches.
It won't be as well as your normal, natural erection.
I understand your points, but have a couple of questions myself.
You state you will lose your natural ability to gain an erection. Since they remove the corpora chambers to do this, then yes I agree. But then why would one have elected for implant surgery in the first place. You should only consider this if you have already lost your ability to achieve a natural erection.
You say it is "guaranteed" to make your penis shorter. Can you elaborate on this? The corpora chambers are replaced with mechanically inflatable chambers. If sized and placed properly it seem loss of length could be minimized. And I believe I have read accounts of implant patients who did not lose any length. I do agree this is a risk and loss of length is very likely. I just struggle with your word.... guaranteed.
You say it won't be your normal natural erection. Again, one should only consider this surgery if one can't achieve natural erections in the first place. And there are stated testimonies of those you have had implant surgery that they have the erection of a nineteen year old again.
????????
Thacker' Formula has been much discussed around here over the years, but just not recently. - George
I had a very difficult experience with Peyronie's starting in 2008. This site was very helpful in a recovery which has been much stronger than I thought possible. I want to thank the site and everyone here. I also want to share my experience. The key piece was alternative but I cannot see anything quite like it in the alternative pages on this list.
I was looking for a massaging to break up the plaque but what I found was a great bodyworker who specializes in everything pelvic. He used Pelvic-Heart Integration developed by Jack Painter, but he had been a Siddha Yoga monk for 20 years and was using that and all kinds of things. While he did a little work on the scar tissue, that only seemed to be a minor part of the contribution to recovery.
The Story. I had seen something about the manual breaking down of scar tissue (massage) on this site and in other places. I was looking for someone who knew how to do it but couldn't find anyone.
Finally, I finally thought of someone who had taken classes with me, who teaches tantra and asked her. She did indeed know a massage therapist who was highly trained generally and who was certified in the area of sexuality in California, the only state to offer that. But it was a man, and I was squeamish about a man working directly on my penis.
Well I got over it and started working with him. He is based in New York City and works in California regularly as well, Bill Zarick, billzarick@gmail.com, (805) 729-5117. [I have his permission to post this but if it isn't allowed to post this information, please delete] It turned out that he knew of the method for breaking up scar tissue but knew much more about the pelvis generally. He was a Siddha Yoga Monk for 20 years and most of what he did came out of that and also out of something called Pelvic-Heart Integration (from a European named Jack Painter).
I had analyzed my problem functionally. It was like my penis was broken in two places and I couldn't get the torque to enter the vagina with the weak erection I could get and it was also very hard to sustain an erection. Functionally, the first thing I needed was to have an erection passing through the broken places and to have it sustain enough to allow entry. I decided I could live with the curvature, but I just wanted badly to be able to have intercourse again.
After about the third long visit with Zarick I asked him to work specifically on erection passing through the lower right break in the penis. Zarick's work on peyronie's does NOT involve stimulation during the session. . it is working manually and energetically in the pelvis area toward healing such that you notice improvement afterwards.
The next day I was on the airplane and I noticed an erection and it just kept staying there. . so I went to the rest room and , MY GOD, the erection included passing right through the broken place on the lower right. FAR OUT! I had been bumped up to first class on the plane so it was easy to go back to the bathroom frequently to check. The erection kept hanging around, I kept checking, it continued passing through this broken place which had not been getting any erection.
In fact I rarely had erections, never through that broken place, never sustaining so much.
Shortly thereafter, I started having intercourse again, and I had 15 straight successful entries with climax over several weeks and each time I got more confidence. Of course it would be better if I didn't have to keep track but after losing it so clearly, I needed to do that for a while. My girlfriend in that time was a magician so that was a factor, too. The recovery has extended over a couple of years and with a couple of different girlfriends who were wonderfully supportive but not "penis magicians". It isn't a straight line recovery but over time it gets better particularly with quite regular intercourse with a supportive partner. Having intercourse and good intercourse is itself healing. The body is learning to adapt. USE IT OR LOSE IT keeps coming to mind. From no capability for having intercourse, I now have come to feeling pretty confident. Sometimes it even seems that I am in one of the better erectile functioning places in my life.
I have continued working with Zarick maybe 4 times/year for a few hours each time. That work is the key. I attribute about 70% of my recovery to that work.
I attribute some benefit to the VED (maybe 15% credit) and and maybe 5-10% to iontophoresis with Verapamil (I preferred to find a mixture of Pentox for that but couldn't ...the bad reports here on Verapamil are convincing but I like iontophoresis). 5% credit to someone I found who was quite experienced in breaking down scar tissue (he worked on over 50 people from a Peyronie's club--Paul St. John). 5% credit to some 20 other things I tried a little which may have contributed. Chris Spivey, a distinguished Physician's Assistant at Birmingham Urological, was the best medical person I found by far.
What was nice about the Zarick work is that I could see outcomes quite soon after it. With much of the alternative stuff and the straight stuff, it is hard to know if it is working or not. I'd love to see a few others try this path. I know enough about research that it can be hard to generalize a single outcome, but I would be cautiously optimistic that if 10 people gave it a good try that 4-6 would have strong outcomes. That would be . . . a good thing.
Thanks again to all the people who keep this site going. Gnosis
So this guy never touched or worked directly on the penis? Just on the pelvic area? Can you describe how he massaged the area? It sounds alot like postural reconstruction perhaps. Like a type of myofascial release.
I'd love to maybe give something like that a shot but I'm afraid I'll never find someone as good as your guy or even anyone at all in my area. Do you think maybe you had a type of CPPS that this guy had released?
Quote from: gnosis on March 14, 2011, 04:44:19 PM
I had a very difficult experience with Peyronie's starting in 2008. This site was very helpful in a recovery which has been much stronger than I thought possible. I want to thank the site and everyone here. I also want to share my experience. The key piece was alternative but I cannot see anything quite like it in the alternative pages on this list.
I was looking for a massaging to break up the plaque but what I found was a great bodyworker who specializes in everything pelvic. He used Pelvic-Heart Integration developed by Jack Painter, but he had been a Siddha Yoga monk for 20 years and was using that and all kinds of things. While he did a little work on the scar tissue, that only seemed to be a minor part of the contribution to recovery.
The Story. I had seen something about the manual breaking down of scar tissue (massage) on this site and in other places. I was looking for someone who knew how to do it but couldn't find anyone.
Finally, I finally thought of someone who had taken classes with me, who teaches tantra and asked her. She did indeed know a massage therapist who was highly trained generally and who was certified in the area of sexuality in California, the only state to offer that. But it was a man, and I was squeamish about a man working directly on my penis.
Well I got over it and started working with him. He is based in New York City and works in California regularly as well, Bill Zarick, billzarick@gmail.com, (805) 729-5117. [I have his permission to post this but if it isn't allowed to post this information, please delete] It turned out that he knew of the method for breaking up scar tissue but knew much more about the pelvis generally. He was a Siddha Yoga Monk for 20 years and most of what he did came out of that and also out of something called Pelvic-Heart Integration (from a European named Jack Painter).
I had analyzed my problem functionally. It was like my penis was broken in two places and I couldn't get the torque to enter the vagina with the weak erection I could get and it was also very hard to sustain an erection. Functionally, the first thing I needed was to have an erection passing through the broken places and to have it sustain enough to allow entry. I decided I could live with the curvature, but I just wanted badly to be able to have intercourse again.
After about the third long visit with Zarick I asked him to work specifically on erection passing through the lower right break in the penis. Zarick's work on peyronie's does NOT involve stimulation during the session. . it is working manually and energetically in the pelvis area toward healing such that you notice improvement afterwards.
The next day I was on the airplane and I noticed an erection and it just kept staying there. . so I went to the rest room and , MY GOD, the erection included passing right through the broken place on the lower right. FAR OUT! I had been bumped up to first class on the plane so it was easy to go back to the bathroom frequently to check. The erection kept hanging around, I kept checking, it continued passing through this broken place which had not been getting any erection.
In fact I rarely had erections, never through that broken place, never sustaining so much.
Shortly thereafter, I started having intercourse again, and I had 15 straight successful entries with climax over several weeks and each time I got more confidence. Of course it would be better if I didn't have to keep track but after losing it so clearly, I needed to do that for a while. My girlfriend in that time was a magician so that was a factor, too. The recovery has extended over a couple of years and with a couple of different girlfriends who were wonderfully supportive but not "penis magicians". It isn't a straight line recovery but over time it gets better particularly with quite regular intercourse with a supportive partner. Having intercourse and good intercourse is itself healing. The body is learning to adapt. USE IT OR LOSE IT keeps coming to mind. From no capability for having intercourse, I now have come to feeling pretty confident. Sometimes it even seems that I am in one of the better erectile functioning places in my life.
I have continued working with Zarick maybe 4 times/year for a few hours each time. That work is the key. I attribute about 70% of my recovery to that work.
I attribute some benefit to the VED (maybe 15% credit) and and maybe 5-10% to iontophoresis with Verapamil (I preferred to find a mixture of Pentox for that but couldn't ...the bad reports here on Verapamil are convincing but I like iontophoresis). 5% credit to someone I found who was quite experienced in breaking down scar tissue (he worked on over 50 people from a Peyronie's club--Paul St. John). 5% credit to some 20 other things I tried a little which may have contributed. Chris Spivey, a distinguished Physician's Assistant at Birmingham Urological, was the best medical person I found by far.
What was nice about the Zarick work is that I could see outcomes quite soon after it. With much of the alternative stuff and the straight stuff, it is hard to know if it is working or not. I'd love to see a few others try this path. I know enough about research that it can be hard to generalize a single outcome, but I would be cautiously optimistic that if 10 people gave it a good try that 4-6 would have strong outcomes. That would be . . . a good thing.
Thanks again to all the people who keep this site going. Gnosis
Interesting. Do you see this as something you could do on yourself or teach a partner?
Dear Crashbandit, Zarick avoided direct work on the penis at the beginning because I was uncomfortable with it. In general, he worked on abdomen (acupuncture points), around the base of the penis, between penis and anus sometimes with breathing, sometimes with sound.. .. .just kind of different ways. He also worked with chest, mouth, places in the neck, legs. Eventually he did some of the scar reduction work on the penis but I don't think that was part of the success so much.
I've done a lot of different kinds of bodywork so some aspects were familiar but overall the work with zarick was just kind of different. And it just has good outcome.
*****
To Samo about working with partners. I started a process with my girlfriend where I would do body work with her that I would want her to then do to me. I would do about 10 minutes. I started with the back and some stretching things around loosening the area around lumbar 3 and 4 (places in the spine in the lower back. The nerve endings connected to the penis have a link there and in one of my bodywork sessions with st. john, he worked on L3 and L4 (lumbar 3 and 4) a lot, and I noticed getting "turned on" more the 24 hours after that. Well it kind of worked and then it led into intercourse that worked.
Another thing I did was in the same structure-- working on her first to show what I thought I wanted -- but it involved working with the whole leg and moving it around as loosening or freeing in the pelvic joint. Another was on the upper thighs as that also would make a nerve link to the penis.
These indirect nerve links to the penis from loosening the lower back, working with the whole leg, working with the inner thigh, seem to be important for setting up a better and more sustainable erection. I.E. it works better than just her stimulating my penis directly when it comes to the overall quality of the erection and having intercourse.
Right after I posted I had two efforts at intercourse which failed and I hadn't had two failures in a row for a while so I don't want to give the impression that everything is perfect.
Zarick is also quite into deeper more meaningful more powerful sexual intimacy both for men and women. That is what I care about and my penis working enough that I can keep exploring that. . . . that is what is important. Gnosis
Correcting the email for Zarick. In posts in this thread, I described a bit of my work with Bill Zarick, a bodyworker specializing in the pelvis, but gave an incorrect email accidentally. It should be billzarick@hotmail.com He works in New York-- tri state area, and in northern and southern california. His work is extraordinary. Gnosis
Hi gnosis,
Hope your maintaning those positive results you yielded from the body work? You still getting the body work done to your pelvis? When you say working on the scar tissue, what do you mean? How did the scar tissue get in your pelvis in the first place? Is there a special course your body worker took for the pelvis area?
Hi Crashbandit,
Yes I am maintaining those good results . .. with occasional setbacks. And I am continuing the pelvic work. I have a session coming up in the next week. My bodyworker, zarick, (billzarick@hotmail.com) has done a ton of various trainings. Specifically in relation to this work he has studied with jack painter, (pelvic heart integration), a legend in Europe, and with Paul St. John (a national bodywork teacher who worked on maybe 50 peyronie's people from a peyronie's club in Tampa) and he is certified in sexuality in california, the only state to give a certification in that area. It is quite obvious if you have done bodywork that zarick is VERY KNOWLEDGEABLE and professional and has a LONG TIME N THE FIELD.
I'd love to get a group of people trying this to see if the results were comparable to mine. . .that would be significant at a larger "social" level. Gnosis
Thanks Gnosis for the email and update.
I'm sending him an email shortly to see if he could refer me to anyone in my area. I wish I could see him in person or even the group you speak of but me being in Alberta, Canada makes it impossible.
I eventually gave up on all the many and varied supps I was taking as I just couldn't tell that anything was doing much. But for some reason, I cling to L-Argenine as I have a sense that it in some way helps with erection quality. I take 2 grams a day, one in the morning, one at night - GNC brand.
Just wondering ... since a couple years ago when the PAV cocktail was all the rage here (and I was taking Vaso-Flow, the foulest-smelling, most potent Argenine available), is anyone still taking L-Argine anymore? I don't see it mentioned too much anymore.
Nemo
Nemo
I'm like you, since 3 months i take 2 grams of L-arginine before sleep. It's very hard to see in all treatment what drug really have a positive effect on peyronie, but i can say L-arginine is one of them. I wanted to take more L-arginine because i saw the diference before and after taking it, but i choosed to add Pycnogenol. Since i added Pycnogenol with L-arginine, i can say that my erections back to normal ( like before peyronie ).
I'm not sure about how much of L-arginine you need to take in a daily base ( depend maybe your ED degree ), as i saw some of people take 500 mg/day and others 5g/day or more. I talked about this with my doctor and we were agree with 2 grams/ day.
Maybe it can be a good idea if you add pycnogenol ( In my case i take 100 mg of pycnogenol with 2 grams of L-arginine ), i really saw the diference when i added it with L-arginine.
Bad side in my case, more expensive adding pycnogenol than increase L-arginine, but it was my choice.
Laurent
http://www.ncbi.nlm.nih.gov/pubmed/21618639
http://www.prostate.net/prostate-health-supplements-a-z/pine-bark-pycnogenol/
http://www.peyronies-disease.co.uk/2010/06/pycnogenol-l-arginine-prelox.html
Nemo,
I'm still taking 2-3 grams of L-arginine daily.
My take, according to the forum, is that Pentox is definitely the best oral medication method. Cialis or similar is also helpful. VED (traction for some) is the best physical therapy.
So, I think the PAV cocktail is still the rage where the V is viagra, cilais or something similar.
CF
So far I cannot detect any damage except what has been brought about by Peyronie's.
Hello all,
It is important to be taking not l-arginine, but instead 'Acetyl L-Carnitine'. I know it can all sound 'alike' and be somewhat confusing. Studies are showing definite break thru's regarding this. I would highly recommend getting on a 1mg+ regimen a day and monitor your plaque and curvature for at least a 3-month period.
Hope this helps many, as I am nearly 100% confident, it will ;D
USER BANNED! He is a: Peyronies Disease SUPPLEMENT RIPOFF SPAMMER
Has anybody tried, or had any experience using Colagenese? I was reading an article in a medical journal that suggested that it could be beneficial in the treatment of Peyronie's as it attacks colagen, the major component of the plaque.
Jonbinspain
I suppose you mean collagenase?
If you will make a search from the main page (Home) for collagenase you will find 49 posts on the subject.
James
Quote from: wiseguy on July 17, 2007, 09:44:50 PM
Hey...
Does anybody have some info about "pentoxifylline injection". Maybe it just the same as taking the pills?
I am taking it. It really has very few results on google, but by the things I have read it seems to be the best thing to do. fujisaki.com.br is my doctor. I am brazilian, maybe here the treatment is cheaper. I would be glad to help. God bless you guys!
Quote from: Jonbinspain on September 26, 2012, 02:57:14 AM
Has anybody tried, or had any experience using Colagenese? I was reading an article in a medical journal that suggested that it could be beneficial in the treatment of Peyronie's as it attacks colagen, the major component of the plaque.
Well Collagenase is essentially the primary ingredient in Xialaflex I believe. I think they make creams and such with Collagenese in it but have no idea if it's meant for Peyronies Disease or if it would do anything.
From the web:
QuotePentoxifylline Injection Solution may be prescribed for Horses.
Quoteintravenous administration of pentoxifylline to healthy adult horses.
And some information on Guinean pigs from 1993/1995.
Interesting.
James
Has nobody tried Collagenase along with DMSO to (theoretically) carry it through the tissue into the plaque? Doubt it would work but it seems someone would have tried it by now.
Quote from: hascal on December 06, 2007, 08:37:02 PM
I have had 4 iontophoresis treatments with Verapamil with 3 more scheduled. Now I am prescribed a compound that I must rub onto my penis two times a day that I will receive tomorrow.
Like all of You I have Peyrone desease (30 degrees to the left). My Uro prescribed me vitamin E but it was only waste of time. I found Serrapeptase useful for stopping pain and temporary slowing disease progression but nothing to do with reverse symptoms. I tried DMSO with Iodine compresses for the night but results were less than average. Now I am trying iontophoresis of verapamil (first two doses) and red light heating a side of penis where plaque is. Can You tell about Yours therapy results?
In another letter I described a possible causes of the disease. Let me give you another example, which concerns my case. The disease can be caused by mechanical trauma that can disrupt membranes. The body is trying to "patch" a break and a scar forms, which is unstretchable. Next time of erection will break of the membrane in place of adhesion (scar) and is accompanied by pain. In this way, the scarring progresses and mine is already about 3 cm. If the "mending" interval followed by a material which stretches like the original there would be no problem.
How to do that the body use the original material to remove interrupt the continuity of the film?
Maybe use of stem cells could be a solution?
I have another theory as it can be done.
That is the theory that Colloidal silver ion dilution can reset the DNA of filler material supporting scars and is automatically replaced with the DNA adjacent cells of the original tissue. In this way in the union there is no scar, but stretchable material as was the original tissue.
I have an example, if the wound with loss of skin fragment will overlap ionic colloidal silver regularly the site of injury is not a scar or adhesion formation (as with burns) only perfectly smooth skin with no signs of scarring.
How to do with Peyronies? When the disease is in the initial period and was established as a result of trauma (like me) should be used iontophoresis of colloidal silver. Since silver ions are positive and should be put under the positive electrode. I will try it by myself.
Pey-penis, interestingly the atomic weight of colloidal silver is 107 da, which means it is possibly able to penetrate through mixing it with DMSO.
Do you have any possibilitie to test this? ( I have DMSO but right now no possiblitie to get the silver)
And, do you think it has any use on older but soft peyronies tissue?
Quote from: Pey-penis on December 30, 2015, 03:36:25 PM
How to do with Peyronies? When the disease is in the initial period and was established as a result of trauma (like me) should be used iontophoresis of colloidal silver. Since silver ions are positive and should be put under the positive electrode. I will try it by myself.
My private opinion is that much more research needs to understand why during the healing process we are developing scars that are different in composition than the original tissue as Pey-penis has said.
Why a lizard can regrow his tail and other creatures can regrow limbs also and we can't?
James
Hello Melting!
First I'll try to answer Your question. If the scar already set up colloidal silver rather can not change the structure of the scar.
I think it's time to develop procedures. I propose for the case Peyronies arising due to mechanical trauma. In the first period, painful, when followed by the healing of broken tissue, the use of iontophoresis with colloidal silver, so that prevent of build unstretchable scar. But if someone like me trusted the doctor and lost the time to test vitamin E and made soft scars, I propose a probe of softening the scars with the help of iontophoresis of iodine in the form of a solution of iodine in potassium iodide (Lugol's solution) and simultaneously stretching the scar with the help of VED. If during stretching one overdo a bit and will get pain from tearing tissue, immediately use colloidal silver in order to prevent the emergence of second adhesion and scar tissue.
I am open to other suggestions of drugs used for softening scars (Xiaflex in Dupuytren's) as well as other ways to enter the locally specific drugs, for example with the use of DMSO.
I ask everyone to comment and supplement this probe managed to create a procedure as effective as possible.
Hello James1947!
Why do we form a scar tissue instead of the original? Even doctors do not possess this knowledge :-( I am sure that colloidal silver has such properties as described (reset DNA), because the use of colloidal silver on the forearm burned skin with plant beetroot Sosnowski (Heracleum sosnowskyi Manden) directed by doctors to skin graft, healed spontaneously under the influence of regular use of colloidal silver on the wound.
I think that this is one of the punishments for "original sin" as well as blocking the production by the liver vitamin C from glucose. If we like other animals produced in the liver vitamin C in large quantities it would threaten us no cardiovascular disease, and a lot of other diseases.
Please read Vitamin C Project (http://www.frex.com.au/vitc-project.html).
I think that use of stem cells may help with some health problems.
Pey-penis
I read the article, thank you :)
By the way, my wife forcing me (I am listening to her in certain subjects even she is younger than me 8) ) to take viatmin C is I have the smallest symptoms of a flue or fatigue.
James
I am buying vitamin C (in powder form) at the same wholesale where I buy other components like for example methylene blue, copper sulfate, magnesium sulfate or magnesium chloride, iodine powder and potassium iodide powder, DMSO.
Similar to what Pey has posted, I have found over the last few weeks that a high dose of serrapeptase is helping with pain. I have had corporal fibrosis for over 2 years and the pain will not go away. About 500,000 units of enteric coated serrapeptase is one of the few things that makes the pain stop. Also, my penis feels warmer and more random erections with the serrapeptase.
I know many have said serrapeptase was not effective for them, but perhaps the dosage was too low or they had the wrong capsulation. IF you are experiencing pain, I would highly recommend trying serrapeptase at the dosage I am using. I also use around 4,000 units of nattokinase.
I will be attempting a high dose of the enzymes and natural PDE5 inhibitors (horny goat weed, damiana, ect) together. There is a study floating around showing the combination of the two helped reverse corporal fibrosis in rats. I know corporal fibrosis isn't what alot of guys are suffering from, but it may be of some use. I never had a 'plaque' on the tunica, only fibrosis of the cavernosum.
Frisky,
What brand are you using? I was taking 9 Blockbuster All Clear per day: 3 at breakfast, 3 at lunch and 3 at dinner. I did that for 4 months and little if an impact.
I am using Doctor's Best Serrapeptase 120,000 strength, as opposed to their 40,000. I also take Doctor's Best Natto-Serra, which is a combination of the two. What dosage were you taking? I checked out your supplement and saw 1 serving ( 2 capsules ) is 80,000 units serrapeptase. I felt no effect until I took 480,000 units. Also, Blockbuster says its time released, but can you verify that it is enteric coated? Its important that the enzyme isnt subject to stomach acids. Lastly, what time of day did you take it or rather when was the last time you ate? I take mine first thing in the morning so as to guarantee an empty stomach, and I dont eat anything for at least 2 hours. I know all of the serrapeptase supplements say to wait at least 30 minutes, but I wait more because I can feel the supplement hit my bloodstream, and that takes around an hour. The feeling I get is a mild warming sensation in my extremities and in the front of my head.
I take around 4-6 capsules of Serrapeptase 120,000 strength
I take 2 capsules of Natto-Serra which provides another 80,000 serrapeptase and 4,000 Nattokinase units
So my total max dosage I have taken is 720,000 Serrapeptase units and 4,000 Nattokinase units
I may try 1,500,000 units, which has been used by some youtube video loggers.
I made a post a few months ago, and in that I said enzymes didnt really help, and they didnt then because the dose was too low.
That being said, I think the enzymes are a small factor in the many things I do. IMO having a highly disciplined and informed diet play is the most critical piece in the puzzle, followed by techniques to reduce stress.
Its not like my pain was just bad and then I took enzymes and it went away. I had already greatly reduced my pain levels by other means, and the enzymes are helping with the last bit that I can't seem to get rid of.
To make enzymes worked and softened - dissolve fibrin need is their high concentration at the place where the fibrin is present. Thus, injections or topical or large doses of oral bypassing the stomach acids are sufficient. I do not have the knowledge if one can enter them locally with the help of DMSO or also iontophoresis.
Hello Melting!
Is there any pattern or some sort of formula, which indicates that the element - chemical compound can be transmitted through the skin by DMSO? I do not come across with something that speaking frankly.
FriskyDingo,
I never thought I would, but I got a cheap bottle of those enzymes and am trying them.
I rarely praise anything after taking one pill and without scientific studies, but last night my penis felt the most elastic it has in years. My wife felt it and even agreed. Not only that but my elbow and hand pain subsided nearly completely, even after having lifted weights yesterday. What the heck!!
THAT BEING SAID, it may be entirely placebo effect, but damn my head feels odd. My entire body felt warm and I could barely sleep. My heart also feels almost silent compared to before. My heart used to beat very hard but now I don't even notice it. I also did some dead lifts yesterday and barely got tired or out of breath. I looked at my wife and I'm like what the hell? If anything I guess I can conclude from the research that it's acting much like aspirin as it thins out my blood.
I am taking it with Pine Bark extract, and interestingly the two were in a study together to reduce thrombosis and edema in long air plane flights. I just hope the two won't put me at an increased risk of bleeding. If you know me, you know that anything that might help edema is worth trying for me.
I will continue taking this stuff and report back soon. I am also still taking CoQ10, Pine Bark, and having two large bowls of blueberries every day, and many cups of coffee to replace pentox (yes it has science behind it for preventing fibrosis just like any other xanthine derivative).
Hey NeoV,
Im glad there you are experiencing, even if temporarily, some symptom relief. I understand your skepticism, I am as well.
I also experienced less sleep. I think it became a problem, and I stopped taking the enzymes a couple days ago and have sleeping better. This is now a contemplation... do I keep taking these at the risk of less sleep? Unfortunately my job requires that I am alert and precise, I cannot make mistakes, so sleep is essential.
Having stopped taking the enzymes for a few days, I have not felt a return of pain. I think thats because I have deploying a topical agent. I think this stuff actually works better than the enzymes, as my penis has been more flaccid, spongier, and warmer than it has in over 2 years. Its called Two Old Goats, and another poster had mentioned it for his penile pain: My way to deal with penile pain - Peyronies Society Forums (https://www.peyroniesforum.net/index.php/topic,6898.0.html)
Only good amazon reviews for this stuff. And having used it for a week now, I must say that it DOES work at reducing pain. I don't have a plaque, but the pain is always located in one specific area. I rub a small amount on before bed and upon waking, and I have been pain free all day.
I will resume the enzymes soon to see it they were in fact disturbing my sleep. Some youtube loggers said that, according to their naturpath, they were experiencing stress on their liver because the enzymes were detoxing a lot of excess crap out of their system. Im not sure if its true, but I experienced a liver detoxification problem when I took a high dose of Milk Thistle, so it may have some merit. And I am still highly skeptical if the enzymes can actually dissolve penile scar tissue. I believe, according to the research, that they are effective in clearing arteries and vein clots. I have seen many amazon reviews stating the enzymes have cleared lung scarring. Im not sure if these reviews are true, but it may old promise for penile scarring.
But yes, I would recommend Two Old Goats lotion. Check out the amazon reviews and posts on other sites.
NeoV, what brand and what dosage of Serrapeptase are you taking. I would like to try so I can compare to the ones I'm using.
Interesting about the essential oil formula. I know a lot of guys tried various oils, some had no relief, others noticed a bit.
Massaging my penis with any oil tens to make the pain go away for a while, I still do it with grape seed oil occasionally.
I'm using Doctor's best, for both serra and natto. I hadn't heard anything about it causing liver issues. That, I am very worried about.
I think there is often a vascular link with Peyronie's. Many people I know suffer not only bending and what appears to be plaque, but also enlarged veins, varicose veins, and thrombosis after injury near or on the penis. I for one developed a massive bundle of veins under my penis when it all started. The bundle moved around a lot and now it's nothing like it used to be. I don't know what exactly caused this or what they were, but I have theories which I speculate are correct. If my case of Peyronie's and other erectile pain is caused by thrombosis, Nattokinase and Serrapeptase should help. So far I've been sitting all day with zero pain on this stuff, and usually sitting causes me a lot of discomfort.
Who knows! But I really hope it doesn't cause any liver issues...
Hey it does not cause liver issues in the sense that the enzymes are harming the liver like alcohol does. Its like the enzymes are allowing the liver to process out more crap in your body, so your liver may be get a little backed up before it catches up with everything. People on liver cirrhosis forums speculate the these enzymes will be beneficial for their livers.
I agree with the vascular part of the disease, and sitting, especially car seats, used to be really painful. I also developed new veins around the injury site.
Since you seem to be a regular coffee drinker, have you ever tried bulletproof coffee? If not, its coconut oil and grass fed butter mixed into your coffee. For some reason the medium chain triglycerides in the coconut oil cause the caffeine to last all day and without a crash. Theres a website that promotes the form of coffee, with their own brand of coffee, but the coffee brand is irrelevant. I only drink coffee 1 day week for my 13 hour shift on Fridays. That 1 cup is 12oz, 3tbs coconut oil, and i actually now forgoe the butter. I swear it is the most effective concoction for stimulation. Literally, the one 12oz cup of coffee with the oil keeps me bouncing all day. I will do a 13 hour serving shift and then go to the gym and bust out an intense workout. I never crash either. It may be that I only drink coffee once a week, but I clearly remember having to keep drinking coffee and crashing on it throughout the day before I tried the bulletproof thing. If you have coconut oil try this. The butter adds a nice flavor if you want to try it.
I've been drinking "bulletproof" coffee for a while now :) or more like black coffee with huge spoon of coconut oil in it lol. I really enjoy it too.
I am a huge fan of proanthocyadins for Peyronies, so in the mornings I have a bowl of oatmeal loaded with chocolate and blueberries (after I've had my pine bark). Goes great with that coffee! I highly recommend buying big bags of organic frozen blueberries and snacking on them regularly.
I had a very hard time sleeping last night after taking nattokinase at night. I'll stick to mornings only for now. It still seems to be giving me a lot of pain relief and I had a pretty awesome erection yesterday.
Lol our fridges may look the same. I have some cacao nibs I eat some mornings and an industrial sized bag of wild blueberries in the freezer. I also have powdered pine bark extract, which tastes awful, but I put it down anyways.
I am glad to here the pain relief from the enzymes. I have a doppler duplex ultrasound tomorrow, and I will be resuming the enzymes afterwards in the mornings only as well. After 4 months or so I will go back and see if the scar tissue has changed at all as a result of the enzymes and other therapies I am and will be employing.
Which pine bark extract do you use?
Awesome, I use Bulk Supplements', which is very cheap and lasts a long time. The only odd part is I don't feel it like the other brands, which used to nearly knock me out and make me nap for hours after taking it. I guess that's a good thing though!
Let us know what the ultrasound shows! I assume that is your first?
It was my first, and unfortunately they werent able to give me the duplex doppler ultrasound as they said they would when I scheduled. The ultrasound I did receive covered my penis and the entirety of my lower extremities. The doctor said that on a range of poor to excellent, my lower extremity and penile arterial health is in the excellent range. Although this ultrasound could not detect scar tissue like the duplex doppler, it does show that the scar tissue I do have is not impeding blood flow into my penis.
What I find really interesting is that I think this demonstrates, that at least for me, that a high saturated fat does not cause 'your arteries to clog' as many people believe. I have been eating a high saturated fat diet for 5 years, and this ultrasound, and other tests I have had done in the past (unrelated to peyronie's), have all shown that my diet (high saturated fat, no processed foods) will not harm your arteries.
Now I am scheduling for a MRI with contrast, which I will have to pay $1100 for. Unfortunately I cannot get a duplex doppler ultrasound anywhere near where I live, the technology just doesn't exist here. I wish that place I went to today didnt lie to me, or if not lieing they knew what they actually offered...
NeoV, I am also using Bulk Supplements pine bark. Do you just toss the stuff in your mouth?
That's really interesting. Personally I think that your genetics play a big role with your diet in how clogged your arteries get. I think diet > genetics mostly, but still genetics have a part in it too.
I put the pine bark in a glass of water and sip it. Strangely, I like the taste! I enjoy it almost as much as I do my coffee. I think my brain has made a positive associations with proanthocyanidins or at least psychologically I have.
I have been a bit concerned however, since Bulk Supps' pine bark doesn't give me the insane erections another brand did, nor does it knock me out. The other one I took made my entire body warm, forced me to nap, and made my penis very very hard. Maybe that one was contaminated, or maybe the source is just different. It's impossible to know due to supplements being nearly completely unregulated. Of course, maybe it was just dosage, but it sure doesn't seem that way.
Since you had such an interesting effect with the other pine bark, what brand was it and what dosage did you use?
Also, do you take it with meals? I would prefer to take it independent of my meals but sometimes things require food for absorption. Internet searches are mixed regarding with a meal or not.
I took Now Foods 240mg, which is from Chinese pine bark, a high dosage mind you, and not the French trademarked "Pycogenol." I'll be getting it again soon to test it. Honestly it really knocked me out and gave me very hard erections, the best I've had in my life along with some Citrulline. I honestly bought it only because it was the highest dosage and lowest price by a long shot.
NeoV
The high quantity you are talking about giving you very hard erection, how much Pycnogenol and how much L Citrulline Malate?
How long time after taking it you got the strong erection?
I try to replace Viagra that makes me headache
James
James, I wont answer the pycnogenol / citrulline question, but if you want a natural alternative to viagra then I would highly recommend Horny Goat Weed. I use to mess around with this stuff before peyronie's and it worked incredibly well. It worked so well for me that girls that usually werent attractive to me were looking very good. It takes a few days to kick in as it builds in your system. Usually by the 5th consecutive day I would feel it kicking in. I took 1000mg of horny goat weed at 10% iicarin (this is the active ingredient).
I have been contemplating taking a combination of horny goat weed, pycnogenol, and citrulline malate once I have completely eliminated the pain.
Also, I have found that Damiana makes me extremely aroused. If I take a high enough dose it makes me so horny I cant sleep. So ya add Damiana to the replace viagra list.
FriskyDingo
First, thanks for the advice.
Now a lot more questions regarding brands and price what I found here where I am living.
You bring it on yourself, I mean the questions ;D
*Naturopatica horny goat weed, they write is from Australia
Each pill contains 3 gram horny weed, tribulus terrestris 3 gr, ginseng 750 mg...vitamins, total per pill 8.3 gram.Sounds too much for me, I don't know. Price 50 tablets $35
*Prolab horny weed
Each capsule contains Niacin 80 mg, horny goat weed 500 mg (10% iicarin), maca extract 250 mg, tribulus terestris 250 mg, gingko...extract 120 mg, Yohimbe extract 100 mg. Price 60 capsules $38
* GNC horny goat weed
Horny goat weed 600 mg, maca root extract 250 mg, polypodium vulgare root powder 25 mg. Price per 60 capsules $65
* Found also a product that they say contains 60% iicarin
What is your opinion about the above products?
James
I personally found Source Naturals Horny Goat Weed to be the most effective. They are 1000mg tablets with 10% iicarins (the active ingredient). I would personally not buy any herbal supplement with a mixture of things because I don't know the side effects of all of them. I have read in the past that herbs like Yohimbe can cause sleeplessness and heart palpitations. I am interested in trying Tribulus, as I have read good literature about it, but that too can cause side effects. Dont get me wrong, Horny Goat Weed can cause sleeplessness too if taken in too high a dose. I had that happen to me simply because I was too horny to sleep.
Get the Source Naturals brand I mentioned if you can. The benefit of doing only the goat weed right now is that you will be able to tell if its in fact the goat weed working, and not some other herb if its a mixture of herbs. Start with half a tablet. You can break them in half easily. After a week move up to 1 full table each day.
By the way, horny goat weed takes 5-7 days to kick in as it builds in your system. Be patient with it.
I have yet to try those supplements Dingo, but certainly will.
I just moved back to Tokyo, and have yet to get my bearings here. I brought my usual supplements and have been eating two containers of natto a day here. I read that one container has about 2,000 FU of nattokinase, which surprises me since it's the same as one capsule, plus isoflavanoids, protein, and vitamin K, among other things, which is simply great.
I still maintain that natto or the capsules make my penis very elastic and makes my heart beat unnoticeable when laying still. Traction in the shower or after natto / nattokinase feels very good and seems more effective.
One thing worth mentioning is that the above effects seemed to be only when first taking the capsules, and now they are back when upping the dosage by eating more natto. I am wondering if the body actually down regulates the effect of this stuff or not. It could all be in my mind, and I do not pretend to be certain about any of these effects.
Now that I'm back here, I also have access to cheap hand warmers which last up to 9 hours which are really nice for hyperthermia treatment, as well as isles and isles of 2 liters of very high quality green tea, or "nama cha", or oolong cha, etc, for only about $1.50 which is simply unheard of in the US and something I am very very grateful for.
Though I've lived in Japan for a total of over 4 years, I've never regularly consumed natto until now, so I will continue eating two packages a day at least, and let you guys know how things feel and if the above mentioned effects continue.
Hey NeoV,
Is the natto raw? Or has it been pastuerized. I think one would get a lot more from it if it has not been pastuerized.
Im not sure if they body can down regulate nattokinase. It is water soluble, so maybe they body easily control it as it does with water soluble vitamins. I wish I could easily get natto. Then I could get nattokinase and vitamin K2 from an excellent food source and I would be able to discontinue two supplements.
I resumed my enzyme protocol. I experimenting with dosages to see what works best. I took 600,000 units of serrapeptase and 10,000 units of nattokinase for 3 days straight and felt great. Well at least my dick did. I felt a slight weirdness in my eyes. Its like my eyes got heavy as if I was tired, but I was not tired. So what I'm trying to do is find the dose that makes my dick feel good without making my eyes feel weird.
Ive been interested in the hand warmer therapy, but I might just try dunking my junk in a glass of really warm water for ~15 mins prior to VED once I started a VED protocol. Most days of the week I cant use a hand warmer for very long.
That is a lot of nattokinase and serrapeptase.
Rather than down regulate, since I understand the body doesn't produce this stuff, I mean compensate I guess. But I have no good reason to suspect this and the research suggests otherwise.
I am afraid of taking too much personally because of that one case of someone taking aspirin and nattokinase who had a brain bleed. Aspirin itself can cause that, and does, all the time, so I don't think it's cause for concern.
The natto I'm eating appears to be natural and raw, but I will try to confirm that. I have many, many, options here all which are very low in price and made in areas of Japan not too far from here. I'll up my dosage a bit and see how it feels.
It's great to hear you feel better after taking those two enzymes. For some odd reason it still seems to make my penis feel better flaccid after taking it.
Im still wondering what the mechanism of action is from the enzymes that is helping us. Sometimes I think its the blood thinning effect, but then why does not having a healthy blood viscosity make one feel better? Ive been told my some doctors in the past that my blood was on the thin side, so maybe its not the blood thinning effect form the enzymes.
I cant find any research in regards to our problems specifically, but, as you are aware NeoV, there is evidence of nattokinase helping with deep vein thrombosis. This evidence may suggest that my problem is a vein problem and that your suggestions of Mondor's Disease in other posts is a possibility. I am considering supplementing with other pro-vein supplements, such as Horse Chestnut.
As of right now my dick specific supplements are Nattokinase, Serrapeptase, and Pine Bark Extract. All 3 have helped me feel better, and I took them independent of each other at first to make sure that was the case. I am now going incorporate Horny Goat Weed, Damiana, and Citrulline Malate over the next few months. I find the two herbs to very sexually stimulating, so perhaps the increased blood flow will be synergistic with the enzymes and pine bark.
I have found an enzyme dosage that makes me feel good without the weird side effects: 480,000 units serrapeptase, 6000 units nattokinase.
I am certain I have vascular issues on and below my penis, and the literature suggests Peyronie's has some links with vascular injury.
Thinning the blood in my opinion, would clear out inflammation trapped in the penis. The anticoagulant effect of nattokinase could help clear these hematomas as well. This may be why it appears to make my penis much softer and more elastic. Pentox, while working in a few different ways, I imagine works similarily.
It appears safe according to this study this year,
Toxicological assessment of nattokinase derived from Bacillus subtilis var. natto (http://www.sciencedirect.com/science/article/pii/S0278691515301344?via%3Dihub)
And serrapeptase works in very similar way to nattokinase. I keep reading that serrapeptase is effective for vein thrombrosis and superficial thrombophlebitis.
There are claims that after taking the enzymes at high dosage for 6+ months one will see noticeable reduction in fibrosis or scarring. Well I am going to make sure I take them for at least 6 months. Like you, my dick is feeling softer, more elastic, and personally I have virtually no pain with the enzymes. In fact, I am able to discontinue a natural pain cream because of the enzymes.
Im not sure if the enzymes will help this heal because of a direct mechanism of action or indirectly by thinning blood and allowing inflammation to clear. I think these enzymes would be useful with VED.
Hello!
I did not write for a long time because I started a combined therapy, which I described earlier. It involves daily using a mixture of DMSO and Lugol 50/50 in the form of poultice compress on the penis for 30 minutes and then the massage with this wet compress the side where there is adhesion while tension the penis apposition. Unfortunately I have no possibility of daily use the VED but as soon as I have a chance to do it. It took almost two months of this combined treatment and I can see already positive results. Adhesion's soften and it can be stretched to the extent that the curvature of the penis decreased significantly and remained a slight trace of a ring around about half the length. At the same time due to financial reasons I no longer follow Serrapeptase. I think that the continuation of treatment described above improve the condition of the penis, but I think that I can not completely remove the adhesion but they can only be extended so as not to cause curvature.
This may be of interested for those with corporal fibrosis:
https://www.ncbi.nlm.nih.gov/pubmed/26405615
>>>>
Results: a decline in the non-treated rat's erectile function is evident by 10-12 months of age and is accompanied by a decrease in the corporal smooth muscle content determined by desmin expression and an increase in corporal fibrosis. The daily treatment for two months with COMP-4 reverses this process by reducing systemic oxidative stress and increasing desmin and iNOS expression, similar to that seen with tadalafil or the combination of COMP-4 plus tadalafil.
CONCLUSION:
An oral combination of ginger, muira puama, Paullinia cupana and L-citrulline seems to be as effective as daily PDE5 inhibitor therapy in either delaying or reversing the onset of the histological and functional characteristics of aging related erectile dysfunction.
<<<<
Im not sure of what its like to take Paullinia Cupana (Guarana) and Muira Puama at the study's recommended dosages. I have taken other VERY POTENT erectile herbs (cnidium, damiana) and let me tell you o my gawd. Herbs can really be effective, and ruin your sleep at the same time. Any one have any experience with these? I can be a lab rat again and test these 2 herbs. Ill need to wait until I have 2 consecutive days off of work to see if they mess with my sleep or not.
I want to share information from my fight against Peyronie. Already more than half a year I used almost daily compresses consisting of a mixture of liquid iodine with DMSO what I said, and used a massage at a place where are the adhesions after the treatment with a compress using that compress containing more Lugol and DMSO. At the beginning of the progress it was much faster because in about four months curvature decreased so much that I could have sex without combination with position "T". Now, unfortunately, progress has been slower but visible. It occurs even small curvature and small diameter stenosis at the site of ball union, which I wrote about previously (message #792). I may have to frequently use the VED which is a bit cumbersome in my situation. It is possible that I can not restore the original condition and appearance of my dick and for a long time yet remain the trauma caused by this disease.
ive been taking it for 2 months now and its side affects are head aches , upset tummy , dizzyness and upset sleep time ... i hate taking it but it looks like if i dont old bendy will get worse ...
Quote from: Chuck on April 17, 2006, 01:18:32 AM
Quote from: roadblock on March 30, 2006, 10:54:15 PM
Gents,
Pentoxifylline also is active in reducing TGF-beta which has been implemented in the development of the fibrous plaques in Peyronies Disease. It seems to me that this is a reasonable treatment with a relatively small potential for serious side effects. Also, Dr. Lue is a well-respected physician in his field with an impressive CV. I know that I'm going to pursue the initiation of this medical therapy, and if any member has any experience with it please post!
roadblock
Yes, it looks like pentox is the only viable treatment for Peyronie's Disease.
Trick,
My URO had me on Pentox for 5 months and it was worthless and I stopped at 4 months because of the pounding headaches I was getting. I guess it has worked for some people, but I am highly skeptical about how well it works for most people. If you are only using Pentox, you may not see any results. My URO had me on traction with the Pentox, still nothing. Good luck, this condition is a pisser!!!!!!!
Trickstar911
Like everything with Peyronies, what works for one, not for sure will work for someone else.
You may want to read also:
PENTOX effect on Peyronie's - Forum Experience - Peyronies Society Forums (https://www.peyroniesforum.net/index.php/topic,2517.0.html)
Oral Treatments General Information - Peyronies Society Forums (https://www.peyroniesforum.net/index.php/topic,2728.0.html)
Aleviating side effects:
* Use the slow release 400 mg Pentox
* Start with one, increase to 2 and then 3. Your body may get used to it
* Take always with meal, not before, not after
* Drink a lot of water
* Take the latest pill not later than 6:00 PM
James
Where did you get the idea for this?
I have. 45 -50 degree left curve but I can't feel any scarring or masses. There is no hour glass ing or dents,and I get very strong morning errections. It's just this disgusting curve.
It's amazing you got results. I would love even 10 degree straightening.
Thank you!
Rudiger
To whom the question is?
James
For now progress in combination therapy (Lugol + DMSO + manual massage) goes on. One thing bothers me: this ball, which causes flexion and a little hourglass decreases slowly but at the same time moves towards the base of the penis and already passed half the length. I do not know why this is happening and it made me a little worried. Another issue is that I purchased in the pharmacy Lugol's solution which is cheated because instead of 5% iodine and 10% potassium iodide contains 1% and 2%. Perhaps this is the reason for the slow improving the state of the penis. So I decided to do it by myself the same liquid iodine with an appropriate percentage and after using this pharmacy bottle I will use mine. If someone was looking for an information about this technique I found on the internet description of iodine where are mentioned a disease Peyronies and Dupuytren. Here's a link to this page:
Iodide - One Mineral Can Help A Myriad Of Conditions From Atherosclerosis To "COPD" to Zits - Tahoma Clinic (http://tahomaclinic.com/2011/01/iodide/). They write there about use of a SSKI but the original Lugol is stronger because SSKI is just concentrated potassium iodide.
This is a reply to an earlier post in this thread....
To Pey-penis & melting...
I hope this does not contravene forum rules. However I wanted to direct you to a product I own (and am in no way affiliated). It's called Spooky2. I've looked at using it for Peyronie's...it could be considered "out there" as it is what's called a Rife technology. This aside it has the ability to produce high quality Colloidal Silver. I've just posted into their forum on the idea of using Iontophoresis and Colloidal silver to prevent scaring - there are some heavy weight science folks there - and to see if their machine could do the Iontophoresis too. I think not as it does not do micro currents. However, if you want economically viable Colloidal silver you can make it with this machine. Here's the link:
[Sorry - Link removed. If I leave the link it implies we support the concept. And frankly I don't know enough about it. So I don't want to be responsible to send someone to a site for a RIFE machine where they hook themselves up to electrical stimulation and plasma generators. There is enough information here that someone could Google and fine on their own if really interested]
I'll report back any responses I get there.
Best,
Lee
I wrote about Iontophoresis an Colloidal silver at another thread. This may be good in acute stage at the beginning.
I am making colloidal (Ion dilution) silver with my own method and device I made.
A month passed since the previous letter. Progress is clear because the curvature diminished considerably. In places after passing of scar union it is soft to slimy so that during the following after the compress (30 minutes), manual massage and stretching (10 minutes) became supple. I currently use Lugol made by me, which has more iodine in the composition but no glycerine so after applying the compress and massage I lubricate the skin with an argan oil (because that I have). On the other hand, unfortunately, spherical union is still here, moves slowly towards the body and causes a slight curvature and a small hourglass in this place where it is currently located. I guess I'll have to frequently use VED because I read that it helps in the elimination of the narrowing in the shape of an hourglass. Is anyone else trying this technique because it really helped me?
If you have questions I will gladly answer.
It already will be a year since I began my treatments according to the method I wrote earlier. Unfortunately I was not able to clear all union and a small curvature and the hourglass continues to occur. This is no obstacle to having sex but always a splinter stuck in my head. I tried to use for compress and massage a Lugol Iodide in higher concentrations and ended up with the exfoliation of the epidermis. I had to do a little break to cure the skin on the penis with colloidal silver of my production so that everything was healed without a trace. I have no idea how to bring it to the end. I did a mixture adding to baby skin ointment (Linomag) a concentrated Lugol and perhaps even try this.
Hey Pey,
Thanks for following up with posts on progress, it is appreciated and needed!
Do you know roughly how much angle of curvature you have reduced with this method?
Cheers,
LeeBee