ORAL TREATMENTS - GENERAL - Vitamins, Prescriptions , Herbs, Supplements

[ComeBacKid]

I've seen quite a few of you guys say you are having an upset stomach in regards to the pentox.  I was on it like two months ago for about a month- I stopped so I could complete the VED protocol.  I was getting an upset stomach then pretty bad.  I've now restarted the pentox with under a month left on the 26 week protocol for the VED, no upset stomach this time- I always take it with food.  I did this before however, and I still got an upset stomach.  It was pretty bad, I would throw up my dinner.  Try taking the pentox with the l arginine supplement, I do this as well and it seems to help some.  I also drink  a glass of water before I eat some food and take the pentox- I didn't do this before and it may have an effect on one getting an upset stomach or not.

ComeBackid

[bart]

I can only find Bromelain in 500mg capsules so i cant cut them in half. How do you take 750mg if you cant cut it. Has anyone else heard of Bromelain in tablet form or different doses?

[George999]

Lots of tablets here: http://www.iherb.com/store/ProductsList.aspx?c=Herbs&cid=bromelain

[myrddin]

Is there a reason you are not taking the cialis or viagra?

Yes. My Uro did not prescribe it.  At the time of my appointment (end of Sept) this whole PAV "cocktail" concept was really new.  I'd never heard much about it, and I'm sure my doc (Dr. Carson at UNC-Chapel Hill) had never heard of it.  Most of the successful studies done on Pentox and Peyronies, don't involve all 3 ingredients, but just report on the effectiveness of Pentox.

But it's something I can discuss at my follow up in 6 weeks: Why do you prescribe only 2x/day?  Why no Viagra, like Dr. Lue recommends?

For now, I have no choice but to, ahem... "stay the course."

I did pick up some more ALC since I associate my worsening symptoms with my discontinuing of it.  Worth a try.

[hopeful]

Hi Rico-Merry Christmas Brother.. It has been a while since I have been on the forum... How is your condition now- since you started the VED, and other treatments- please let me know..

Hopeful

I was told that many people give up on the VED after two months, or hit a wall....I wonder if this is like supplements also, or pav cocktail.....it seems one has to stick with a program, the hard thing is not knowing what to do, my gut told me to stay on the ginkgo and ved and exercise program and diet...I was getting good results.....kept reading post on pentox...the best thing out there ect....I do believe it was a mistake for me...now I'm at a crossroads with it.....I miss eating really good food, spicy, curry ect....and the exercising, I also think maybe the other supplements might of given me a sense of general well being, OPC's are good for you.....the taste of pentox is such a chemical...nasty.....

Rico

[/quote]

[hopeful]

Excellent Post George- You have done a geat deal of research.. This sounds very encouraging!

Merry Christmas!

Hopeful

I want to just share a note of encouragement and an update.  Over the past few days I have noticed an unusual level of burning pain in my plaques (I normally don't experience any pain).  

[Rico]

Hopeful:

Thank you for the holiday cheer and right back at you brother:)...

I stopped the VED treatment after several weeks on the pentox, this was due to the fact that I was getting red dots on the head of my unit....there is a name for it....it escapes me now....but I'm still on the pentox, twice a day along with some ciliais and arginine...... my thoughts where that I could always remold with the ved, but since I was in my early stages...now eight months, it was best to use the pentox..... at this point I feel it is all a crap shoot.....

Sometimes one has to learn how to live with a condition than try and change it....I thought about peyronies 24/7 for six months, this is not healthy.... I see this with many others, they go after it for months and then back off...one has to get on with there life...

In the early stages the forum is a great place for someone to go for support and knowledge.... what you do with it is your choice....

Rico

[ComeBacKid]

Rico,

The name is petachie, the pentox thins the blood and this is why your experiencing this, I have a couple of dots here and there, I noticed them as soon as I added pentox to my regiment.  I just now pump more lightly.  

Myrddin,

You are right the study I saw done by Dr. Lue was done with just pentox.  I don't know why people keep insisting it included pentox, l arginine, and viagra, this is simply not true.  The positive results seen in the lab dishes were with just pentox, and the man who got rid of his calcification was on just pentox from what I read.  It does seem that adding l arginine and viagra can't hurt though. I know for myself and many others I've talked to, the affordability of viagra is a big problem for this treatment protocol.

ComeBackid

[serpicor]

Does pentox aggravate working out or exercising?  I know when I had tendinitis of my ankle, grape seed extract would inflame it.  Do you get used to the meds and exercise like usual?

[ComeBacKid]

I've beeon on pentox now for a handfull of weeks, I"m taking 3 pills per day.  I've been running about a mile most of those days.  I've had virtually no side effects from pentox.  The only thing I experienced was restlessness in the legs- mainly the ankles and feet, it felt funny.  This could be due tot he blood thinning effects and the increased circulation in the lower half of the buddy.  The positive effects I've noticed so far are better hang when flaccid and more solid full erections.  I have less than three weeks left of my VED 6 month protocol so I"m doing that.  When I started pentox I also started L Arginine, which I"m taking about 2grams daily.  

After some searching I found this chart of side effects from trental, it was interesting to see the high percentage of people who experienced nausea.

http://www.rxlist.com/cgi/generic/pentox_ad.htm

ComeBackid

[Hawk]

After some searching I found this chart of side effects from trental, it was interesting to see the high percentage of people who experienced nausea.

http://www.rxlist.com/cgi/generic/pentox_ad.htm

ComeBackid,

Am I misreading your link?  To me it shows only 2.2 patients with nausia.  Even the placebo caused .8 on the time release.  That would be only one out of every 60 men experienced more nausea from time release pentox than from the palcebo. This seems VERY low to me.

Also note-worthy is that there was only a 2% difference in the rate of patients that discontinued use between the placebo group and the pentox test group taking immediate release pentox.

[ComeBacKid]

Hawk,

I was viewing the data on the immediate release caps.  But yeah looking over the data on the commercially available caps nothing really sticks out at me as being overwhelming.  I've noticed for myself the second time around here on pentox that I don't get an upset stomach as long as I take my pills with food and a full glass of liquids. The chart concures with my observation of having virtually no side effects while on pentox- other than the weird feeling in the lower half of my legs I'm having.

ComeBackid  

[DannyOcean]

Sorry, been away from the forums for a while and just saw this...

So what I do is with either my thumbs or my index and middle fingers together I do fairly firm circular motions on pretty much my entire pelvic region.  I'll do this for about 20 minutes once a day or so.  What I have noticed is that during and after a session I'm almost always hanging very, very full.  I also seem to be getting more daytime and nighttime erections.  Some of this no doubt could be due to Pentox but I think the massage is helping as well.  I skipped it for a couple of days last week and noticed that I wasn't as "full" during those days.

This seems like one of those things that almost certainly won't hurt and could be significantly helpful in terms of increasing circulation.  Since that is also one of the main benefits of Pentox it seems like combining Pentox with massage might make a lot of sense.

Danny:

For the benefit of this 77 year old mind, please elaborate more on what you term groin massage.

Thanks, Old Man

[Tyler]

Hello again everyone,

It has now been about 3 months since i started Pentox three times a day. When i started the pentox i stopped using Potaba amd Verapamil and i must say that i have seen more terrible things happen over the past three months than in the entirety of my disease. EVERYTHING is getting worse. I am not going to turn anyone away from trying pentox, but i would like to say that Potaba and TV kept my condition remotely stable for around 6 months. Now, after all those months, i have seen terrible results. IMHO potaba is a way stronger shot at your goals. I am still taking Pentox 3 times a day but i have begun to take TV again. Just thought i would check in and let everyone know whats what. Sorry for my negative news, i usually try to stay positive.

-Tyler

PS.. i was taking Minocycline for acne before i had Peyronies and i stopped when i got it because the guys at Peyronies Disease Labs said it was a bad idea. Has anyone read anything about the Tetracyclin family and Scar tissue/Fibrosis.?

[csup]

Tyler,
Sorry to hear about your negative results w/ pentox. I have been taking it for about a month now along w/ the other 2 pav ingredients, and also applying TV.  If I can trust my fingers, I am actually feeling a slightly smaller plaque nodule. This just shows how frustrating this disease is. What seems to work for one person completely backfires on another. That is why it is taking so long to find a good solution. Hope your old treatment plan gets you back on track. crs

[jon]

I know for myself and many others I've talked to, the affordability of viagra is a big problem for this treatment protocol.

ComeBackid

I've actually switched over to horny goat weed from viagra due to cost. my insurance won't cover it at all. I'm fighting with them on that, but for now I'm taking 1g Horny Goat Weed 3x daily in place of 25mg viagra 1x daily.

[George999]

Tyler,  are you still taking the Vitamin E with the Trental as Dr. Lue recommended?  If so, what brand and type? - George

PS - I would really try to work with Dr. Lue on this.  He is one of the best out there and Pentox is a proven product.  Three months is nothing, this takes a long, long time to resolve and patience will benefit you mightily in the end.  But it is VERY important that you are using the right type of Vitamin E.  Vitamin E is known to be a powerful synergist with Pentox which means that it can significantly enhance its healing effects.  I would also recommend you use Mangosteen juice, a powerful anti-inflammatory agent which should help halt any further progression.

[mark501]

George 999, what dosage of Vitamin E (natural mixed tocopherols) would you recommend for use with Pentox?  Mark 501

[hopeful]

How is it working??- Please advise

Hopeful

ComeBackid
[/quote]I've actually switched over to horny goat weed from viagra due to cost. my insurance won't cover it at all. I'm fighting with them on that, but for now I'm taking 1g Horny Goat Weed 3x daily in place of 25mg viagra 1x daily.
[/quote]

[Liam]

PS.. i was taking Minocycline for acne before i had Peyronies and i stopped when i got it because the guys at Peyronies Disease Labs said it was a bad idea.

Someone reresh my memory about Peyronies Disease Labs.

[George999]

George 999, what dosage of Vitamin E (natural mixed tocopherols) would you recommend for use with Pentox?  Mark 501

I believe the most important factor is that you use a 'broad spectrum' E with all eight tocos.  I use an relatively inexpensive one: http://www.iherb.com/store/ProductDetails.aspx?c=Herbs&pid=NOW-00811.  As far as dosage, you should discuss that with Dr. Lue.  But these newer broad spectrum Vitamin E products are far more effective (at least in my experience) than the simple mixed tocopherol types.  And the ratio of alpha-tocopherol to gamma-tocopherol is important.  There are also other good similar products like, for example, GNC Isomer E. But the softgels themselves should be brown horse pills, not the typical pea sized tea colored products.  Only the elongated softgels contain enough product to be effective. - George

[George999]

PS.. i was taking Minocycline for acne before i had Peyronies and i stopped when i got it because the guys at Peyronies Disease Labs said it was a bad idea.

Someone reresh my memory about Peyronies Disease Labs.

Well, for starters, there is an interesting topic on this very forum entitled: Report on PDLabs and Topical Verapamil.  You might start your refresher course there?  But who knows, they might actually be right about Minocycline being bad for Peyronies.  But for sure I can tell you that Dr. Lue is miles ahead of Peyronies Disease Labs when it comes to treating Peyronies Disease.  I think  that Tyler is in good hands with Dr. Lue and that he should not give up too quickly.  I think he needs to communicate with Dr. Lue his frustrations and be receptive to Dr. Lue's responses.  I think he also might ask Dr. Lue why he is not being prescribed Viagra and Arginine along with the Pentox.  I am sure Dr. Lue must have a reason for not including these in Tyler's case, but I think it is important that he have an open channel of communication with his doctor that includes understanding why his treatment regimin is such as it is.  From what I have heard about Dr. Lue, I think he would be very responsive to Tyler's concerns.  I think Tyler should also read the above mentioned topic and get a better picture of the darker side of PDLabs and TV.

- George

[Liam]

:::DOH:::

I think I just had what my mom calls a senior moment.

PDLabs = Peyronies Disease labs  The shortcut types out the full word instead of the two letters.

Any good treatments for brain function?

[jon]

How is it working??- Please advise

Hopeful

ComeBackid

I've actually switched over to horny goat weed from viagra due to cost. my insurance won't cover it at all. I'm fighting with them on that, but for now I'm taking 1g Horny Goat Weed 3x daily in place of 25mg viagra 1x daily.

I've only just recently switched over, so I'll report on it later, but there are multiple posts concerning horny goat weed vs viagra. HGW contains icariin which is a cGMP-specific PDE5 inhibitor, which correlates to the why for viagra usage in the PVA (pentox/viagra/l-arginine) treatment regiment. But being as how it's not nearly as strong a cGMP-specific PDE5 inhibitor as viagra, a significantly larger does has to be taken.

For some dry reading:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14996430&dopt=Citation

[DannyOcean]

So I've run out of my L-Arginine capsules and am planning to re-stock.  I've had the Arginine E2 Matrix stuff on order for a month and a half and it still hasn't arrived so I'm thinking I might need to bail on that and go with something else.  I know George999 mentioned VasoFlow and so I've been looking into that.  I'm curious if anyone else is doing that, what dosage people are taking and where the cheapest place is to buy it?  

Also, are there any other L-Arginine products that are worthy of consideration?

[George999]

I too was waiting for a long time on the E2 Matrix product.  But when I contacted the manufacturer (SAS), they gave me a date and then didn't (or couldn't) deliver.  It was at that point that I went with VasoFlow.  I always considered VasoFlow a better progress, but was avoiding it because of the price.  But at this point, for me, its been well worth the price.  They (SAN) recommend 6 in the morning and another 6 before daily workout = 12 per day, but that is a body builder's regimin and I am not taking it for that purpose.  What is working well for me is 2 immediately when I wake up, 2 before midday exercise, and 2 more before bedtime exercise.  As for the best place to get it, bodybuilding.com has a very good price (considerably less than MSRP) and very good service.  That is where I am getting mine and I am still very happy with it.  You get what I consider to be a tremendous punch out of a small amount of arginine and the additives that give it that punch are the very same substances that are anti-fibrotic in terms of Peyronies (ie Arginase inhibitor, PDE5 inhibitor, cGMP upregulator, etc).

- George

[mark501]

George 999, Thanks for the recommendation of www.iherb.com   The NOW brand "GAMMA E COMPLEX" is on sale til end of Dec; 120 softgels at $ll.58.

[mark501]

I found an article on Vitamin E today at the LIFE EXTENSION website. It is the most informative that I have ever read on the components of Vitamin E & may be important for anyone with peyronie's. The author is Karin Granstrom Jordan MD. All statements give medical references with abstracts on page 3.  I found three especially interesting pieces of information from the report. #1. Vitamin E in food more effective than alpha-tocopherol supplements.  #2. High dose alpha-tocopherol decreases absorption of gamma-tocopherol & reduces effects of tocotrienols. #3. Studies of alpha-tocopherol alone without the mix of other tocopherols & tocotrienols has shown PRO-OXIDANT rather than ANTI-OXIDANT activity in people consuming high doses (over 1000mg). If #3 is true, no wonder Vitamin E has had such a bad rap among men with peyronie's. It appears from the article that it's not such a great idea to take vitamin E unless it has the proper ratio of tocopherols & tocotrienols. Did any of our urologists ever tell us this?     http://www.lef.org/featured-articles/vitamin_e_01.html        

[George999]

Mark, I would absolutely agree with the info you posted. (In fact the Pauling institute questions whether the typical synthetic E on the market even gets absorbed by the body at all, from the testing they have done, they suspect that most if not all of it gets absorbed by the toilet bowel.)  In addition I can tell you that even broad spectrum Vitamin E in high amounts also depletes Vitamin K.  Therefore ones Vitamin E 'stack' should include a good quality Vitamin K, preferably in the K2 form.  Also even full spectrum Vitamin E in high amounts may oxidate LDL contributing to cardiovascular disease, therefore, a Vitamin E stack should also include 24hr coverage with 8hr time-release Vitamin C which should prevent that from happening.  In any case, I would be very cautious not to exceed 2,000IU of Alpha Tocopherol daily as above that level other more perverse side effects begin to set in.  I am currently at that level with no problems, but don't plan to exceed it as I deem it too risky.  I also suspect that there would not be much to gain by moving the dosage higher.

- George

[tdsc]

I saw this on the other peyronie's board (posted in 2003) and thought I'd post it.  It's interesting that neither one is stated as effective alone.  Probably the people who take pentox are already taking vitamin E but this supports some basis of taking it.:

Randomized, placebo-controlled trial of combined pentoxifylline and tocopherol for regression of superficial radiation-induced fibrosis.

Delanian S, Porcher R, Balla-Mekias S, Lefaix JL.

Service d'Oncologie-Radiotherapie, Hopital Saint Louis 1, Paris, France. sylvie.delanian@sls.ap-hop-paris.fr

PURPOSE: Radiation-induced fibrosis (RIF) is a rare morbid complication of radiotherapy, without an established method of management. RIF treatment with a combination of pentoxifylline (PTX) and alpha-tocopherol (vitamin E; Vit E) was recently prompted by the good results of a clinical trial and an animal study.

The present double-blind, placebo-controlled, monocentric study was designed to assess the efficacy of this combination in treating RIF sequelae.

PATIENTS AND METHODS: Twenty-four eligible women with 29 RIF areas involving the skin and underlying tissues were enrolled from December 1998 to April 2000.

These patients, previously irradiated for breast cancer, were randomly assigned to four balanced treatment groups: (A) 800 mg/d of PTX and 1,000 U/d of Vit E; (B) PTX plus placebo; (C) placebo plus Vit E; and (D) placebo-placebo.

The main end point measure was the relative regression of measurable RIF surface after 6 months of treatment.

Assessment was completed by depth (with ultrasonography) and associated symptom measures. RESULTS: Twenty-two patients with 27 RIF areas were analyzed at 6 months.

Mean RIF surface regression was significant with combined PTX/Vit E versus double placebo (60% +/- 10% v 43% +/- 17%; P =.038). The median slope for the speed of RIF surface area and volume regression was significantly higher for group A than groups B, C, and D. All treatments were well tolerated.

CONCLUSION: Six months' treatment of combined PTX/Vit E can significantly reduce superficial RIF. Synergism between PTX and Vit E is likely, as treatment with each drug alone is ineffective, but these results require confirmation in larger series.

J Clin Oncol. 2003 Jul 1;21(13):2545-50.

[tdsc]

Here is a follow-up post on the pentox, vitamin E: http://www-dsv.cea.fr/content/cea_eng/esp_info/recherche/cea_bio/bio33/biopartenaires33.htm

[tdsc]

By the way, I was able to get a prescription for pentox by going to one of those walk-in medical clinics.  I called on the phone to one of the clinics and asked if the doctor would be willing to prescribe trental for fibrosis- didn't mention peyronie's.  She said they would.  When I went there, I told her that I was seeing a urologist from a different city and that's what I was dosed on, but the urologist said I could try to get the prescription filled from an internest.  So she wrote the prescription after taking a blood sample (didn't think it was necessary but consented anyway) and recommended that I see a urologist.  Previous to this, I went to another clinic with the same name, brought in a paper about peyronie's and  pentox possibly being beneficial and she said she wouldn't and I would have to see a urologist, so it's probably better to say that you were already taking the medication.

[thompson72]

On George's suggestion of the San Vaso Flow, I've been looking into it and it looks like pretty good stuff since it has an esterfied form of arginine (lasts longer in the body), OPC (from grade seed), Cnidium Monnier (hopefully free of heavy metals), and L-norvaline for an arginase inhibitor. The one ingredient I'm not really sure on though is the Ornithine-Alpha Ketoglutarate.  I remember George saying that Ornithine was not good back on post #1110 and Tim explained an interesting Ornithine cycle back in post #1108.  What's the conclusion, is Ornithine good or bad for our purposes? Or does this different form act in a significantly different way?

Also, the Vaso Flow label doesn't says exactly how much L-norvaline is in the product.  Does anyone think it might be a good idea to take some additionally in order to ensure that we're getting enough arginase inhibitor?  I found that bulknutrition.com carries L-norvaline.

On an interesting note, the L-Histidine HCL it contains says it is a derivative of histamine. You all probably knew this, but histamine aids erections.  That's a new one for me! http://cat.inist.fr/?aModele=afficheN&cpsidt=3388471   But I guess that makes sense considering that OTC anti-histamines can be used to bring down overly long lasting erections. www.sexualhealth.com/article.php?Action=read&article_id=287&channel=1&topic=17

[PJ]

Would one of you kind gentlemen who has done the research and has a clear understanding of this sort of thing care to post a link to a recommended Vitamin E product?
I would very much appreciate the assist.
---PJ

[tdsc]

It is interesting to note in the link in post #1342, the picture at the bottom.  There are improvements in color of the skin and inflammation, although they don't post pictures of those not taking the medication.

[DannyOcean]

So I've been doing a lot of diet-related research these last couple of days and it got me thinking about the role of diet in Peyronies Disease.  It's actually pretty interesting to me that we endlessly debate supplements here and at the same time almost never talk about nutrition (other than Rico's constant admonitions to eat lots of fruits, veggies, whole grains, etc. .  I'm wondering if this might be a big mistake given that from my research it seems like certain foods can have very strong inflammatory or anti-inflammatory effects.  

I'm definitely going to be diving into diet headlong in the next few weeks exploring everything from The Paleo Diet to macrobiotics to superfoods.  I'll definitely share with you guys what I find and will be interested to hear your thoughts.

And I hope this is the right forum for this since we don't have an actual nutrition forum.  Since the physiological effects of food on the body are very similar to vitamins, herbs, etc., I figured it be the right fit.

[George999]

Danny, I don't know whether you realize this or not, but you are getting into an area that has been hashed over to the point that it has become ancient history.  We ALL agree that it is important to have a healthy diet, get proper exercise, stop smoking, excessive drinking, engaging in prostitution, you name it.  It is also very important to take steps to lower stress and improve circulation.  HOWEVER, none of these issues have the kind of direct bearing on Peyronies that this forum is geared to.  There is an off-topic thread open to posts on general health.  That is probably the place where these types of discussions belong.  So unless the post has a DIRECT bearing on Peyronies, it really doesn't belong here and Hawk is probably going to move it to the off-topic area.

So if you want to discuss diet in a relevant way, you need to point out a SPECIFIC food or diet plan that is DIRECTLY beneficial to someone with Peyronies and be able to defend that scientific basis for that assertion.  Likewise with issues like 'improving circulation'.  Peyronies plaques suffer from ischemia, meaning an insufficiency of blood flow.  But you can do all kinds of very effective things to improve your GENERAL level of circulation and that is not going to necessarily help your LOCALIZED circulation problem that is aggravating your Peyronies.  This is because no matter how much you improve your circulation, and doing so IS a healthy thing, the area affected by your Peyronies is going to remain just as ischemic as before because it is composed of certain biochemical factors that prevent any localized improvement in circulation.  Unless you are directly targeting those specific factors, you are fighting the wind.  So unless you can point out and successfully defend a DIRECT Peyronies link, your post does not belong here.

I am sorry to have to be so direct on this subject, but some of you out there really don't seem to be getting the connection.  There are lots of other fine web sites dedicated to these extraneous topics that do a much finer job at them than the folks trying to hold this website together will ever have the manpower to harness.  So only by focusing on issues that directly affect Peyronies can this site hope to continue to be successful.  If you have interests in other larger issues, there is nothing wrong with that, and it can have great indirect benefits, but this is not the place for those discussions --- please take them to the off topic area if you must post them here.

Respectfully,

George

[DannyOcean]

With all due respect George I disagree.  We're spending a ton of time on here talking about vitamins, supplements, etc. and almost no time talking about diet.  In reality the most bio-available nutrients, anti-oxidants, etc. come from the food that we eat.  So to say that we can talk about pills ad naseum but that talking about diet is "off-topic" strikes me as very short-sighted.  You state that we agree that we should all eat healthy diets but there is a lot of disagreement as to exactly what that means.  

Look, I have no interest in debating the "perfect diet" here on this board.  What interests me more is discussing the role that diet might play in recovery from Peyronies Disease.  I was reading a book entitled The Paleo Diet today and it was talking about the anti-inflammatory effects of Omega-3 fatty acids.  Since anti-inflammatory effects are good for Peyronies Disease sufferers (you say so as much here), I would think this is a very relevant topic.

The bottom line is that we all need to put our bodies in a condition where we can heal ourselves.  If we're downing all sorts of supplements and drugs but at the same time eating lot of junk foods, saturated fats, processed crap, etc. we're probably not maximizing that condition.  In fact, we're probably making all the money spent on supplements and drugs (not to mention the time spent debating them) largely counter-productive.  Just my $0.02.

P.S.  Just saw your "Improvement" thread that I linked to above for the first time and was incredibly inspired by it.  I'm hunting down Full Spectrum Vitamin E at this very minute.

[Hawk]

George,

Your post below was excellent and was summarized very well with this paragraph. I added the bold underline.

There are lots of other fine web sites dedicated to these extraneous topics that do a much finer job at them than the folks trying to hold this website together will ever have the manpower to harness.  So only by focusing on issues that directly affect Peyronies can this site hope to continue to be successful.  If you have interests in other larger issues, there is nothing wrong with that, and it can have great indirect benefits, but this is not the place for those discussions --- please take them to the off topic area if you must post them here.

Respectfully,

George

Anything I would say would only repeat the points that you made.  It is not a question of whether these things are good or not.  They are unquestionably good for general health, and it can be extrapolated that they would probably be good for Peyronies Disease.  However, until some establishes: a direct benefit to Peyronies Disease, expert opinion that it is likely to significantly impact Peyronies Disease, or clinical studies with Peyronies Disease patients, it does not qualify as being "Directly related to Peyronies Disease or the treatment of Peyronies Disease"

[DannyOcean]

I guess I'm missing something here.  Just a few days ago George posted a recommendation for Mangosteen juice (#1328) because of its anti-inflammatory effects (which contained no mention of a direct benefit to Peyronies Disease, no expert opinion that it is likely to significantly impact Peyronies Disease and no clinical studies with Peyronies Disease patients).  I'm trying to see how that is different from what I posted.  

My feeling is that the physiological and pharmicalogical effects of food are not really any different from those of supplements, herbs, etc.  So to have different rules for one versus the other seems like a double standard.  I personally want to know how everything I'm putting into my body affects me.  I don't see why it matters if the Omega-3 comes from fish or from a capsule.  And if there are specific foods or diets that can help Peyronies than this seems to be the most logical place to post them.

And no, we're not likely to see clinical studies anytime soon on the anti-inflammatory benefits of salmon for people with Peyronies Disease nor will see an expert opinion that says yoga is great for us.  That's because there isn't much money to be made in the medical industry by pushing fish or workout routines.  But I feel pretty strongly that if these things have been proven to have similar effects (e.g., decrease inflammation, increase circulation, etc.) to other things that have been proven to help Peyronies Disease then they are worth investigating.

[George999]

Danny, I was not suggesting that you should not make posts regarding food.  If you are aware of particular foods that are particularly anti-inflammatory, anti-oxidant, anti-PDE-5, anti-Arginase, anti-TGF-beta-1, etc., please post away.  But I did intend to take a swift shot across the bow in terms of where I expected this topic might be headed.  My point was that whatever you are discussing from food to Yoga, you need to point out clearly how it DIRECTLY impacts Peyronies.  You might also want to mention SPECIFIC foods or issues that have a DIRECTLY negative impact on Peyronies.  What I did want to head off is what has happened multiple times in the past where we quickly move from Peyronies issues to very generalized health and nutrition issues.  So my response was not intended as an attack on your post, but rather a reminder to keep the focus on Peyronies issues.  If I didn't communicate this intention well, my sincerest apologies.  - George

[Tim468]

I personally have mixed feelings about relegating the discussions regarding diet to "Off-topic", as opposed to, say, "alternative" therapies. The main reason is that the Off-topic area is geographically located further (farther?) down the page and out of sight, out of mind.

That said, one could argue that both mangosteen juice and a discussion of diets are "off-topic" as neither are shown to be of value in treating Peyronies Disease.

Where we let others down in this area, though, is in hiding discussions that might lead to improved health, and hence to reducing severity and/or risk of worsening Peyronies Disease (or certainly reducing the risks of getting Peyronies Disease). Thus, avoiding diabetes can significantly reduce the risk of getting Peyronies Disease - and diet has a HUGE impact in this realm. Anti-inflammatory therapy is almost certainly better is taken as food instead of supplements - just look at the difference in heart protection from Omega-3 supplementation versus eating fish and flax seed in the diet (the latter is far better for you).

So diet is hugely important in overall health and has a direct bearing on how one heals from Peyronies Disease, IMHO. However, getting better may require a knife and/or presecription medications also.

One other point - George has gotten better, and so I tend to lsten to what he says about self-treatment, as I tend to pay attention to "Old Man" about how to use a VED. I would argue that if there is one case report about diet fixing Peyronies Disease, we should be willing to discuss it here. I think that the sub-topic headings are good enough to help folks decide what to read more closely.

Tim

[DannyOcean]

So I'm trying to make the decision between these two.  Vasoflow sounds good but of price we're looking at about $0.90 a day (assuming 6 capsules a day).  The L-Arginine I've been taking is only around $0.30 a day for the same 3g/day.  I'm trying to decide if the price difference is worth it.  I'm already on Pentox and Viagra which is about $2/day right there so I guess an extra $0.60/day isn't the worst thing in the world but at the same time if I'm paying triple for something I want to know that its worth it.

Any thoughts?

[George999]

Tim, I agree with you that diet should not be a forbidden subject in and of itself.  My concern was that we were at risk of drifting into a generalized discussion of healthy diet, rather than touching on diet and certain dietary items as they DIRECTLY relate to Peyronies.  I think it is extremely important to maintain that focus and always try to center back on it because it is so easy to drift off into areas that have no real connection with Peyronies.  As Danny points out, I myself have MENTIONED diet and exercise, but I have tried very hard NOT to make them the main topic of this discussion.  As for anti-inflammatories, I certainly prefer Mangosteen over NSAIDs.  I have found it to be extremely effective without any of the nasty side effects of most NSAIDs.

Danny, a few posts down you assert that healthy diet is 'better' than 'pills'.  In general, I would agree with that statement.  But there are times when one has to resort to pills.  In cases where large quantities of a particular beneficial substance are needed, you certainly would not want to consume the amounts of food necessary to achieve those targets.  In fact you mentioned specifically Omega-3s.  You would have to eat a very fish heavy diet to get therapeutically beneficial amounts of Omega-3s.  Such a diet would load you down with intolerable amounts of heavy metal contaminants.   Fish oil supplements, on the other hand, are concentrated and processed in such a way that heavy metals and other contaminants are safely removed.  In the case of VasoFlow, I am using it instead of L-Arginine because other forms of L-Arginine simply didn't work for me.  That is probably because with my advanced hypertension, I am Arginine resistant in terms of BP.  But I have to wonder if my Peyronies is also 'Arginine resistant' and I suspect that the VasoFlow formula is as much more effective on my Peyronies issue as it is on my BP issue.  Remember, VasoFlow isn't just another Arginine alternative, rather it is an engineered formula designed to overcome Arginine resistance by attacking Arginase and promoting cGMP.  It is also designed to allow far more Arginine to be assimilated AND it is designed to be sustained release so all that Arginine doesn't just explode through your body and then disappear 90 minutes after you take it.  And if whatever you are taking simply ends up coming out in the toilet bowel (either unabsorbed or as overflow), that is not a bargain either.  Having said that, I would suggest that you try it both ways and see what seems to work best for you.

- George

[ComeBacKid]

I've been doing a lot of reading on pentox- it looks promising, seems safe, and doesn't have many side effects at all.  I've been on it now just about a month.  The one thing I can't seem to find is an explanation of why one has to take pentox for so long( a year or longer) for it to be effective.  I don't recall us discussing this, if so someone please enlighten me.

ComeBackid

[tdsc]

On post 1341 and 1342, with pentox at 800 mg/day combined with vitamin E at 1000 IU a day, the fibrosis was significantly reduced at 6 months.  It also states that on the combined medication the rate at which the fibrosis retreated was significantly greater.  Peyronie's is a type of fibrosis, so the plaques and disease may retreat faster when using this.

[tdsc]

ComeBackid-  Here is another link: http://www.jco.org/cgi/content/abstract/23/34/8570

This may or may not have a correlation with peyronie's but for this group of radiation induced fibrosis, those treated for only 6 months to a year had a 40% increase in the fibrosis when stopping the medication (fibrosis measured at the end of treatment) and 8.4% increase in fibrosis upon stopping for those treated 2 years to 4 years, so this may require longer treatment.  However, they say that for more severe radiation induced fibrosis, you need the longer treatment.  Again, radiation fibrosis may be more severe than peyronie's so treatment of that length may not be necessary.

[thompson72]

Here's a great article on Ginkgo Biloba Extract.  

http://www.chinaphar.com/1671-4083/27/1222.htm

Some quotes from it:

• High glucose is presumed an initiating agent and increased transforming growth factor-b1 (TGF-b1)
• These results suggested that EGb could decrease the expressions of collagen IV and laminin in mesangial cells and captopril's capability of decreasing expressions of collagen IV and laminin was between that of EGb's moderate and high dose (P>0.05)...The results suggested that the high dose of EGb had a similar capability to captopril of decreasing the expression of TGF-b1 mRNA
• Various antioxidants inhibit mesangial cell activation by high glucose and ameliorate features of DN. It has been reported that the glucose-induced collagen IV expression can be partially reversed by the addition of two structurally unrelated antioxidants, trolox and a-lipoic acid, in porcine mesangial cells[3]. So antioxidant treatment is a potential antifibrotic therapy
• In conclusion, EGb can regulate the mesangial cell cycle, ameliorate oxidative stress state, suppress the accumulation of collagen IV and laminin, decrease TGF-b1 and Smad2/3, and increase Smad7 expressions in cultured cells.

What I take from this quick read is:

• For our supplements to work, for example Ginkgo as a reducer of TGF-b1, one must have a low-sugar, healthful diet (I know everyone says a 'healthful diet is important', but I find this interesting b/c it's direct evidence as to exactly how it can affect the efficacy and goal of our supplement regimens)
• Antioxidants are useful for even more than controlling free radicals and could potentially be useful in and of themselves for fighting fibrosis. (this supports what others here have found)

[Tim468]

ComeBackid, Think of it this way. The pentox allows healing to gradually take place by promoting good stuff. The bad stuff has to gradually get cleared up.

For remodeling to occur, one simply has to promote "normal" (in the case, turn off TGF and other inflammatory pathways). Then the usual process of scar being replaced by more normal tissue can occur. Remember that not a single cell in your body is immortal - all of them are replaced by similar cells, using a cell-cell interaction and language that regulates what the replacement cell will look like (cancer is unregulated growth of a single cell line). Thus, even a hard bone is actually made up of cells that are in a constant state of turnover; that is why a bone can remodel itself and a jagged fracture line can "smooth out" over time.

Pentox promotes the normal pathways of wound healing - I do not think it "dissolves: scar or anything like that. Therefore, the dissolvement of the old scar (to be replaced now by healthy cells) therefore takes a normally longer amount of time. This is quite different than something like surgery where scar is removed suddenly, or enzyme therapy where it is "dissolved" more rapidly.

The shorter answer is that we plan to take it for 2 years because that is how long it takes.

Tim

[George999]

ComeBackid, just to add to Tim's comment.  Researchers were able to 'cure' Peyronies in rodents in a much shorter time frame than is possible with humans.  The reason is that they used massive quantities of Pentox.  This was possible because in the case of the rodents, they were 'sacrificed'  at the end of the study in order to evaluate the results of the treatment, and so any future impact of such massive medication on the health of the rodents was not an issue.  Since in the case of humans there is no expectation that we are going to be 'sacrificed (euthanized)' at the end of six months, there is concern about potential long term adverse effects of unnecessarily high doses.  After all, Pentox is modifying a biological process that is there for a reason and normally serves a beneficial purpose.  If you push that process around too hard you are going to get nasty short term side effects and possible long term physiological damage.  That is why the plan is to GENTLY restore you to normality.

Thompson,  Your post is extremely interesting to me since it implicates elevated serum glucose levels as an up regulator of TGF-beta-1 and thus a possible instigator of Peyronies.  Then connect this with the fact that regulators in Europe are currently worried that beta blockers are causing diabetes AND quite a few of us have contracted Peyronies while on beta blockers.  That is really fascinating along with the ability of Ginkgo to apparently counteract this process.

- George