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

[finartmike]

Sorry to hear that, George.
My doctors are now arguing amongst themselves as to treatment.  I looked for Gamma vitimin E and in england found none!  They import from the U.S.  What is it again that sets apart Gamma and Alpha?

I have book marked the Now health site.
In England I can order a Gamma complex 50 ml ? made by Sargol? for $21.50  See I have already forgotten I should write it down.  

I could have had Peyronies for a year or 6 months and I cannot feel any consistant shape of the plaque.  I had better self examine more thoroughly and on a daily basis as I do not know how it is progressing.

[Tim468]

George - sorry to hear about the new lesion. It may also be unrelated to anything that you have done - cause and effect is so darn hard to figure out.

Your comments about periodontal disease are also appropos. By finally dealing with a chronic tooth problem, I noted that my progression of Peyronies Disease stopped. Again, cause and effect is hard to prove, but I will stick with self-care if it seems to help!

Tim

[Rico]

George:

You said a bend is there that wasn't before, is this a extreme bend? And did you get any hour glass effect...

I know inflammation can go in spurts, and become inflammed and be affected by other health issues or stress....

My condition hasn't change much lately, my only thing is that I don't dwell on it really either.... I'm not happy with it, but I have come to terms that it is going to do what it wants to.... one can only try and live with it and be as happy as one can with this terrible illness(diesease) and hope that someday someone like auxl will perfect the aa4500 or the VED or something works for them.... done of us have the same condition exactly and we will all have to go down  a different path with are condition.....all the vitamins in the world won't bring one back to normal, but a healthy life style can make one more apt to heal better, and this is also from a mental stand point, which for me is the hardest part of peyronies to deal with..

Rico

[George999]

You might want to check out iherb http://www.iherb.com.  For UK customers specifically: http://www.iherb.com/store/Info/Shipping/uk.aspx.  I have been ordering from this US based company for some weeks now and they have executed my orders flawlessly.  So I can highly recommend them.  They also have a wide range of products.  Also, if you are ordering HERBAL products.  Note that MANY herbal products are either less potent than they claim on the label or are contaminated with lead.  So I would suggest that it would be worth while if you are using herbals to join Consumer Labs http://www.consumerlabs.com.  They do independent testing on a wide range of supplements and herbs.  The cost is only $27 US per year and it can save your health.  And while they do not test every product category, by reviewing their tests results, you can get a good idea of which manufacturers and distributors are 'clean' and which are 'shady'.  I am to the point where WHENEVER I see a product contaminated with lead or any other toxic substance, for example, I will NEVER, EVER, buy ANY product from that company.  In my mind it is just too easy for these outfits to do routine lead tests on their bulk purchases and so their should absolutely no excuse for shipping a product contaminated with lead.

- George

[George999]

Thanks all for your kind words.  After a day or so of doubling the HGW, the situation is already much improved and I feel like I am back on track again.  I really had no idea how important the HGW-Icariin was in keeping this thing under control.  It really seems at this point that abruptly cutting the Icariin in half had a major effect on me, at least that is my hope.

Tim - I can certainly believe that the problem with your tooth was exacerbating your Peyronies.  I have every suspicion that systemic inflammation from ANY source has a huge impact on this disease that is not yet fully appreciated in the medical community or in our community at large.  I am so glad to hear that you are on the mend again.

Rico - Good to hear from you again.  The bend was never significant but it was obvious, and it was new, and that was what was disturbing to me.  At this point as I have stated above, increasing the HGW seems to be taking effect.  And I agree as to the healthy lifestyle issue.  The book I have repeatedly mentioned - "You: On a Diet" has been a real eye opener for me in that it makes all the connections and is written by medical pros whose credentials are above reproach.  They drive a stake into more popular myths about healthy living than you can imagine and gore plenty of sacred cows in encouraging people to eat certain foods that have traditionally been considered unhealthy.  They also address exercise in a way that you would, more than anyone, appreciate and they vindicate much of what you have been saying about it.  At about $15, it has been one of the best investments I have ever made.  Now, my big job ahead is to try to empty the fridge of all those toxic foods they point out in the book .

- George

[Rico]

George:

I'm glad you are feeling better or your condition is.... I do find it hard to believe horny goat weed has anything to do with it, just my opinion.... and for most people with peyronies I don't think  a vitiamin or supplement is going to make a large bend or hour glass get much better.... it seems that you never had a really strong case of peyronies, which is good for you. Over all health with minor peyronies is a good choice to keep it at bay....

I feel that the mental aspect of this diesease plays a bigger role than we might think also.... the stress of it all is terrible and probally for most the hardest thing to cope with and plays on your condition and over all health... for me at least it has... it can take the joy out ones heart and this will make ones self esteem and over all health go down hill....

I think one might want to look at this more than anything, one has to find joy again to get well... easier said than done...

Rico

[ComeBacKid]

I've now been on pentox over a month, haven't missed a dose thus far.  Initially it seemed to give me really good flaccid hang and solid full erections.  Lately that has lessed somewhat, but its still better than before.  Bloodflow seems to be increased to my penis, I don't know if this is solely from the blood thinner or not  Overall I've had virtually no side effects other than the weird feeling in my legs and ankles in the beginning, this has no went away.  I do believe that someone mentioned pentox can weaken ones immune system, did anyone hear about this?  I found that interested since I've had a middle ear infection and minor cold since starting the pentox, but who knows could just be a coincidence.  Besides this I"m still taking L Arginine at 500mg twice per day, and pumping with the VED B Cylinder every other and every third day.  It seems as if I have found a good balance and for now I'm at least holding my peyronies in check.  

[Tim468]

I just got my order of Puritan's Pride HGW. I had been buying a brand from the local grovery store (Giant Eagle) and it was often discounted to 4 bucks for a bottle. When I got the new stuff yesterday it looked exactly the same. The manufacturer of HGW for Giant Eagle is "Nature's Bounty". Since they looked so similar, I googled the two names and found out that Puritan's Pride and Vitamin World are wholly owned subsidiaries of Nature's Bounty!

Oh well - if they pass muster for contaminants that is what counts. When I scan for "bad hits" on Consumerlab.com,  all three brands pass muster as reaching the criteria for safety. Then I got to thinking about consumerlab.com. A review of a google search for consumerlab.com and "fraud" got me to a ltter from the FTC to a consumer watchdog group called the "Council for Responsible Nutrition" that said:

"Thank you for your January 12,2005, letter and subsequent materials regarding ConsumerLab.com, LLC ("ConsumerLab) and its Product Review and Voluntary Certification programs for testing dietary supplements and similar consumer products ("Test Programs"). Council for Responsible Nutrition alleges that ConsumerLab's "entire business model represents an egregious form of consumer fraud and deception," and asserts, among other things, that

* Companies are pressured . . . into paying a fee" for testing under the Voluntary Certification program to avoid potential negative consequences of having their products tested under the Product Review program; and that
* ConsumerLab's Test Programs and its reporting of test results "are likely to mislead consumers into believing that ConsumerLab is operating in the public interest and cannot be influenced by any outside party."

The Commission has been directed by Congress to act in the interest of all consumers to prevent deceptive or unfair acts or practices, pursuant to Section 5 of the Federal Trade Commission Act, 15 U.S.C. 3 45. A representation, omission, or practice is deceptive if (1) it is likely to mislead consumers acting reasonably under the circumstances; and (2) it is "material," that is, likely to affect consumers' conduct or decisions with regard to a product or service. An act or practice is unfair if it causes or is  likely to cause injury to consumers that (1) is substantial; (2) is not outweighed by countervailing benefits to consumers or to competition; and (3) is not reasonably avoidable by consumers themselves.

In determining whether to take enforcement or other action in any particular situation, the Commission rnay consider a number of factors, including the type of violation alleged, the nature and amount of consumer injury at issue, the number of consumers affected, and the likelihood of preventing future unlawful conduct and securing redress or other relief. After reviewing the complaint and related materials, staff is not recommending agency action at this time. The Commission reserves the right, however, to take such further action as the public interest rnay require.

Thank you for bringing Council for Responsible Nutrition's concerns regarding ConsumerLab.com, LLC to our attention."

Bummer, I thought.

So then I looked at who this Council for respon.. well you know.. so I googled them and the word fraud. Interesting result!

"The Council for Responsible Nutrition (CRN) is a trade association that represents the interests of about 70 large dietary supplement ingredient suppliers, manufacturers, and other companies that service the industry. On May 15, in the wake of a "Good Morning America" exposé, CRN issued a letter urging federal agencies to crack down on coral calcium advertising. The third paragraph states that CRN is concerned that "permitting continuation of such highly visible and fraudulent claims" will undermine consumer confidence in . . . . those responsible companies who provide quality products based on sound science." The timing of CRN's letter is interesting. Although outrageous claims for coral calcium have been flooding cable television and the Internet for at least two years, CRN did not act until the major media began debunking them and it became obvious that regulatory action will be taken. "

So, a group of supplement suppliers turns out to be this "consumer group" - and they report the consumerlab.com to the FTC!!!

Ah - what a man can learn on his break. Time to go back to clinic.

Finding out the truth about what supplements are worthwhile might continue to be somewhat difficult, it appears.

Tim

[Rico]

Tim:

I'm curious that you feel pentox and the pav is the best oral treatment available, and then you aren;t taking pentox but will take hgw, which too me is a waste of time to take.... and who knows what you are taking also.....  

It just makes me curious, since pentox gives you blood flow to that area which also helps with erections.... why you mess with hgw.... have you went to a urologist lately?

Rico

[George999]

Rico, HGW contains Icariin which has similar effects to Viagra.  Viagra just does a better job at it.  I don't know about Tim, but in my case I am taking HGW instead of Viagra because my Peyronies is simply not severe enough at this point to warrant paying a lot of money for Viagra.  Tim just might be in a similar situation.  That doesn't mean that either one of us consider Viagra to be a bad medication.  It is just very expensive, but if you need maximum action, you get it with stuff like Viagra, Cialis and Levitra, OK?

Tim,  I am convinced that Consumer Labs is on the up and up and CRN, the industry watchdog is furious at them because they are outing the scowflaws in the supplement industry and CRN doesn't like that.  Their complaint to the FTC which you referenced, was investigated and got nowhere.  It is very interesting that Nature's Bounty owns both Puritans Pride and Vitamin World, but that is irrelevant to the issue.  So is the fact that Consumer Labs solicits products for testing, its part of how they pay for their overhead.  If you check out their list, there are plenty of products that they tested that were from companies not cooperating with their testing program that also passed their tests.  The problem is there are a lot of supplements out there that are misrepresented and/or contaminated and CRN is trying to cover that up.  You can make your own choices, but when I consider the alternatives, I prefer to listen to an independent testing organization.  The fact that they are attacked by an industry lap dog is to me just that much more evidence of their credibility.  Just face the facts.  These supplement companies have plenty of money to sue them for defamation if they really were skewing the test results, but CRN hasn't even alleged that they are.  Isn't that interesting?  Probably its because they're not!

- George

[DannyOcean]

Great discussion guys.  A few follow-up questions and suggestions:

1.  George, you've mentioned Icariin a bunch but I don't see it in your list of supplements.  Can you share the type of Icariin you are using?

2.  Also, would you mind sharing dosage for each of your supplements with us?  Sorry to be a pest.

3.  I'll second the recommendation of You on a Diet.  Got it this week and paged through it and it looks good.  Two other books that I would recommend are The Hardness Factor and Fantastic Voyage.

This is great stuff.  I feel like maybe we're pioneers when it comes to Peyronies Disease and someday a bunch of people are going to look back and be extremely grateful to us in terms of figuring out what helps to diminish or eliminate the condition.

[George999]

Danny, the Icariin is a component of Horny Goat Weed.  I am currently using Nature's Way Horny Goat Weed, since in general they seem to have a pretty good record of getting their formulations right and keeping the lead and other contaminants out although they did get caught selling Nettle with lead contamination, but, to their credit, they immediately did a recall and apparently resolved the problem by changing suppliers.  The only company that I know of that has actually passed independent testing on Horny Goat Weed with a clean bill of health is Nature's Bounty mentioned by Tim.  According to Tim they also produce the Vitamin World and Puritan's Pride brands.

As for the dosages, that is difficult since I adjust them often, but usually I simply try to follow the labels.  The major exception would be Vitamin E which I am taking 2000IU and Vitamin C which I am taking 6-8 grams per day.  But I don't plan on keeping that up forever.  A few more weeks and I will probably give my body a break around the time I start taking Acetyl L-Carnitine.  But if you take that much Vitamin E, be very careful and be sure to take plenty of Vitamin K and Vitamin C with it, as not doing so can be deadly.  I would not recommend to anyone that they take that much, but it is working out for me, but their are also plenty of risks that go along with it, and hopefully I am mitigating them, but it is kind of uncharted territory so PLEASE don't take this as a recommendation.  Other wise I pretty much go by the label.  The VasoFlow would be the other thing - I am taking less of that since I really don't qualify as a body builder - at least not yet.

You: On a Diet is just great.  The more you read it, the more you'll get out of it.  These docs are really onto something.

- George

[Tim468]

Misc replies:

I take HGW because it is easier on my system than Viagra of cialis is. No hangover, or headaches! Based on erection quality, it definitely has an effect that is a step down from Viagra but leaves me feeling pretty normal in my erectile function.

I am holding off on Pentox, but plan to start it soon. My main holdup is being sure that I do not have any reasons not to take it, so I am looking into that with my doctor. My urology appt is coming up. Also, I am looking into why I have a slight arthritic inflammation in several finger joints - I would like to see if I have rheumatod factor, and if I do (and need to treat that) if it will be affected by Pentox.

Tim

[scott]

Does anyone know anything about N-acetyl cysteine (NAC) and whether it might be helpful for Peyronie's?  From my research, it seems to be helpful for some other forms of fibrosis, but haven't uncovered anything specific to Peyronie's.

Any input would be appreciated.

[Hawk]

I have taken NAC since prior to Peyronies Disease because it is a pre-cursor to glutathione which exhibits anti-tumor properties (prostate cancer).  I cannot say if it has a place in treating Peyronies Disease since I developed Peyronies Disease while taking it.  My Peyronies Disease could be worse since I have lost size and have a dent but no longer have any real curve.  Who knows what might have been without supplements???

I do not know of any action against fibrosis but our partners over at the Dupuytren's Society have mentioned it on their forum.  By the way, they have also achieved the BTS Dupuytren's site since all forums at the BTS are pretty much defunct.  http://www.dupuytren-online.info.  

[jwelw]

Hello. I am new to this forum. I am interested to know if anyone has had success using sski and dmso or the herbs that are advertised on the web for Peyronies Disease. One herb formula offers a 60 day money back guarantee, though I am skeptical. Dr. Jonathan Wright who seem generally reliable and intelligent recommends dmso and sski. Any useful info would be appreciated.  

[Liam]

Dr. Jonathan Wright who seem generally reliable and intelligent recommends dmso and sski

.

I have my doubts having read this:  http://www.quackwatch.org/04ConsumerEducation/Nonrecorg/aqa.html


Sorry,

Liam

[Rico]

Dear forum members,

I read a article by a Veterinary group who where using Penotoxiflylline for some skin diseases on there dogs, they like what they have seen and mention that they don't have case studies on the generic brands, but the anecdotal comments are that the brand Trental works better....I myself was prescribed trental but my order was filled generic....

I then was reading article by a western doctor who is using western medicine along with herbs, he is prescribing for better eye sight for some of his people a combination of ginkgo biloba/pentox/fish oil.... he says the pentox makes the blood cells smaller and the gingko pushes them better and the fish oil(omega3&6) softens the membranes.....

I don't know if my insurance states they have to go with generic, but I'm going to try a get a refill of trental, although I never hear before that generic isn't as good?

I have only read one article that a person had a problem with ginkgo and pentox mixed before, and he was in ill health anyway..... I think I'm going to go back using some ginkgo along with my pentox, I have been doing fish oil for sometime now and feel it is good for over all health anyway...

Rico

[George999]

Rico, I THINK you should talk to your pharmacist about the Trental.  My guess is that IF you INSIST on Trental, your insurance company should still reimburse you based on the cost of the generic and you will need to make up the difference.  That is sort of what you would be faced with.  And no, this is not the first time I have heard of generics not being as good as the original.  It is not common, but it does happen.  I can also tell you that strange things happen when comparing competing drugs.  For example, for YEARS I took Septra without incident.  And then for some reason my doc switched me to Bactrim (which is the identical product made by a competing company).  Instantly with the first dose I got an allergic reaction.  That has always made me suspicious.  And then I find this website years later which is basically a forum for people reporting allergic reactions to this drug.  More than 7 out of 10 are reporting reactions to Bactrim with only 1 out 10 complaining about Septra.  These are the two leading brands that both claim to be the same drug formula.  Whats wrong with this picture?

As for Ginkgo and Pentox, you can protect yourself by requesting your doctor to periodically check your platlet coagulation factors to make sure you are not getting into dangerous territory.  I think this is a simple blood test, your doc should be able to tell you more.  The fish oil is good stuff but can thin the blood as well, but the platlet factor is what I would want to keep an eye on.

- George

PS - Over on causes we have somehow gotten off on a fascinating discussion on pirfenidone which, hopefully, Hawk will discover and export over to this thread where it probably belongs.

[Hawk]

Over on causes we have somehow gotten off on a fascinating discussion on pirfenidone which, hopefully, Hawk will discover and export over to this thread where it probably belongs.

George,  I moved that discussion to "Developmental Treatments"

[DannyOcean]

So I'm heads-down on the process of triangulating in on a "perfect" supplement regimen.  I'm currently using three sources:

#1 - George999's supplement program ("G999")
#2 - The book Fantastic Voyage ("FV", Ray Kurzweil's supplement routine is listed on pages 144-145, it is quite extensive
#3 - The book The Hardness Factor ("THF")

I'm basing my supplement rountine primarily off of George999's while looking at Fantastic Voyage and Hardness Factor for confirmation as well as other possible supplements to consider.  

So here's what I've come up with that I'm going to use for sure (along with where I'm planning to purchase them from):

L-Arginine - Vasoflow ends up being $0.27 per 1.5 g while NOW's L-Arginine powder clocks in at $0.06.  I'm going to go with the latter until I can find a compelling reason to do the former, planning to do 1.5g 2x/day in smoothies + about  L-arginine that I get in hemp and whey protein powders
Fish Oil - Whole Foods 1g 3x/day (it's 18%/180mg EPA and 12%/120mg DHA), might switch to this one as it looks good, has signficantly more EPA/DHA and seems affordable: http://www.t-nation.com/readTopic.do?id=910074
Horny Goat Weed - Finishing up some from TwinLabs, Going to switch to Nature's Way once I finish the bottle
Maca - a rounded teapsoon which is approx 6g 2x/day in smoothies
Aloe Vera - 2 oz. of aloe vera gel 2x/day in smoothies
Multi-Vitamin - Taking Centrum
Alpha Lipoic Acid/Acetyl-L-Carnitine  - 525 mg/Carnitine + 225 mg/ALA 2x/day, have some from Nutritech-Nutritionals that I'm going to finish and then look for a more reputable brand
Pycnogenol Extract - Taking some from some crappy brand I got on eBay (definitely am going to look for a more reputable brand when I finish what I have)
Ginkgo Biloba - Planning to start now that my Pentox is gone...any suggestions for brands?
Curcumin - Mentioned in FV as an anti-inflammatory, planning to start...any suggestions for brands?
CoQ10 - Planning to star...any suggestions for brands?
Quercetin - Planning to start...any suggestions for brands?
Vitamin E - Planning to start...see below...

That's it for supplements.  I know it sounds like a lot but after looking through the FV book and seeing what those guys do and the impact on health I think it's fine (as long as I'm getting the supplements from good sources.

Now I do have a couple of questions:

#1 - The various vitamins (C, K1, K2, D, B6, etc.) that G999 takes...is the rationale here to simply get a higher dose than you would get in a multi?  Centrum contains all of those (although it just lists "K" not K1 or K2).  Since I'm already going to be popping a lot of pills I'd love to not have to do all of these individually if I could avoid it.

#2 - I have a lot of "Vitamin E with Mixed Tocopherols" sitting around from back when I first developed Peyronies Disease.  I'm wondering if I should take those until they're gone or move to the NOW Foods Broad Spectrum.  I know there has been a fair amount of debate on this but I can't recall what the verdict was.

OK, as if this post wasn't long enough I wanted to mention the supplements that were listed in more than one of the three books I read.  I'm planning to take all of these expect Grape Seed Extract although I may start on that down the road.

Supplements mentioned by all three sources:

L-Arginine
Fish Oil/EFAs

Supplements mentioned by two sources:

Alpha Lipoic Acid (G999 & FV)
Acetyl-L-Carnitine (G999 & FV)
Horny Goat Weed (G999 & THF)
CoQ10 (G999 & FV)
Grape Seed Extract (FV & THF)
Quercetin (G999 & FV)

OK, the fingers are tired.  Please feel free to critique what I'm up to.

[George999]

With all the recent discussion about NAC, I have looked it over and find it somewhat interesting and am planning to give it a shot.  As for the Vitamin E, my take on all the discussion that has taken place on this forum is that it should at least be a "High Gamma" form of mixed tocopherols, but I prefer the full "High Gamma" + "All 8 toco Broad Spectrum" approach.  Also the liquid aloe vera is not the same as the softgels I was taking (and will start taking again if I can get my doc to get me off the Thiazide), the softgels contain bitter medicinals which are filtered from the liquid products, so suit yourself, just an FYI.  Costco definitely has the best prices on CoQ10 if you can get access to them, USP verified ingredients too.  I am now adding ALC and simultaneously dropping my Vitamin E from 2000IU to 1200IU per day.  I am currently strategically using Fibercon regularly and finding it useful for weight loss.  I am expecting to receive my Z-Trim tomorrow and to use it instead of the Fibercon right away.  I am currently at 166lbs headed down to as close as I can get to 140 from 185.  I am already seeing results from that in terms of my BP and general feeling of well being.  The Peyronies is pretty much in a holding pattern right now with no real visible progression or regression, so I continue to tweak, have patience, and observe the results.  Life is good and its getting better!

- George

[mark501]

I have been taking l000 IU of full spectrum Vitamin E (w/all 8 components) for about 3 weeks along with varying amount of Vitamin K.  This past week I developed a subconjunctival hemorrage of the eye (into the white part of the eye). While this type of thing looks a little scary I understand it is not something to be too concerned about unless it is recurring. The blood is gradually reabsorbed by the body, usually in a 2 week period. In an unrelated event, I had a small cut on 1 finger this week and found it difficult to stop the bleeding. This is very unusual for me.  I have discontined all Vitamin E for an indefinate period while continuing to take Vitamin K & eating foods high in Vitamin K. This experience has made me much less interested in trying Pentox or a Pentox/Vitamin E combination.  

[George999]

Mark, sorry to hear that.  For the record, I have been taking 500mcg of Vitamin K1 plus 100mcg of Vitamin K2 (MK7) daily.  It is a really good thing that you stopped the Vitamin E right away under the circumstances.  But the fact that you still are having a problem with your finger cut AFTER stopping the Vitamin E seems troubling to me.  You might also want to do an inventory of any other supplements or drugs you might be taking that might have an effect on clotting (other than the Trental) and you also might want to get a blood test to evaluate your clotting factors INCLUDING platelet activity (which is affected by Trental and supplements other than Vitamin E).  It is important to note that some people do have problems assimilating Vitamin K AND that some Vitamin K supplements (and they are really hard to find) might be deficient.  So the only way to SAFELY resume Vitamin E would be to have your clotting factors monitored at regular intervals, which should be justified medically after an incident like this, since the level of Vitamin E you were taking is actually an amount that has been administered safely in the past with Trental without Vitamin K according to some of the research I have read, BUT they were most likely monitoring clotting factors.

- George

[DannyOcean]

Just about ready to place my order.  Here's what I've got:

NOW Quercetin with Bromelain 120 vcaps (Amazon)
NOW Curcumin (High Potency) 60 vcaps (Amazon)
Swanson Ginkgo Biloba Extract 60 Mg 240 Caps (Amazon)
Nature's Way Horny Goat Weed - Standardized Extract 60 caps (Amazon)
NOW L-Arginine Powder 1 lbs (Amazon)
Nature Made® CoQ10 200 mg 60 Softgels (Costco)
Nature Made® Omega-3 Fish Oil 1200 mg 300 Softgels (Costco)

I'll be continuing on with these that I mentioned previously

Maca
Aloe Vera
Multi-Vitamin
Alpha Lipoic Acid/Acetyl-L-Carnitine
Pycnogenol Extract

It's a lot of stuff but given George999's improvement and what I've read in a few books lately (specifically Fantastic Voyage) I can make a pretty strong case for just about everything on this list.  Not cheap but since I'm no longer spending $4 or so a day on Viagra and Pentox I guess I can splurge.

Planning to place the order tomorrow.  Let me know if you see any room for improvement.

[tdsc]

George999- I can't be certain but a few months back I may have had a pre-brain hemmorhage if that is possible from using vitamin e, alpha lipoic acid, acetyl-l carnitine and adding borage oil.  On the bottle after the fact, the borage oil bottle said don't mix with other blood thinners and it may cause headaches in some people.  What happened was after taking the borage oil and vitamin E that morning I had a sudden increase in pressure on the left side of my head while concentrating on a book.  As the pressure built up I immediately stopped concentrating on what I was doing and the pressure went down (the build-up in pressure and the release was probably in the span of 3 seconds).  Later on in the day, I felt hungover and I'm not sure if it was the supplements, but at times I had popping sounds in the back of my head when I would talk, but that sudden increase in pressure was startling.  I found it difficult to concentrate for the next week like a hangover, but it could have simply been the supplements exerted some sort of an effect on me.   I'm not sure if it was a small bleed or if the pressure of the veins or arteries increased dramatically and put pressure on my head briefly I don't know.  It may not have been anything but simply was a drug effect, but I'm not too sure if drugs would cause a feeling of a sudden dramatic increase in pressure.  This was not painful at the time like a bad headache so that probably rules out a brain hemmorhage, just a very sudden increase in pressure is what it felt like.  I don't think it was anything dramatic though because there have been no after-effects as far as I can tell.

Also, as I'm sure it's been mentioned before, you want to ramp up the vitamin E slowly.  I've heard from coumadin users that the risk of hemmorhage is greatest in the beginning when your body gets used to it.  Now I'm speculating, but the reason the clotting factors are still thin a week after stopping vitamin E is that the vitamin E stays around in the system longer than coumadin.  I have had a sensitive tongue and that may be from the supplements that I was taking as it thinned my blood.  After stopping the supplements, I've noticed that my tongue is not as sensitive as before.    

[George999]

Many supplements and herbs (as well as drugs) do increase risks from bleeding.  But there are numerous blood factors that can contribute to abnormal bleeding and only a specific blood test can determine which of those factors are causing the problem.  A major danger is that one can assume that a certain herb or supplement is causing the problem while continuing to take the one(s) that is the actual cause.  Supplements, herbs, and drugs interact in complex ways.  Certain oils, fish oil for example, actually deplete the body of Vitamin E.  So while fish oil contributes to bleeding by affecting platelets, it can actually protect against bleeding while taking Vitamin E due to the fact that it causes it to be more rapidly depleted.  Vitamin E, on the other hand, depletes Vitamin K which is actually one of, if not the major factor which links it to bleeding.  Knowing this, I would never take Vitamin E without taking Vitamin K concurrently.  Like fish oil, borage oil also causes platelet issues.  As for Acetyl L-Carnitine, I have never heard of it being associated with bleeding.  And high doses of Vitamin E can, along with there anti Vitamin K effect, also cause platelet issues.  But 1000IU seems too low to be causing platelet issues UNLESS a person is taking other platelet affecting supplements concurrently.  In Mark's case (due to the Pentox) that might imply that this might well be a platelet issue, but he also might be having an underlying platelet issue that needs to be addressed since the combination he was taking really shouldn't be causing him this much of a problem.  Thus one does have to be careful with these combinations.  I think it is also important to make sure to get plenty of Rutin to strengthen the vascular system when taking any blood thinning substances.  As for Coumadin, it is almost exclusively an anti-Vitamin K, anti coagulation drug (like Vitamin E only far stronger) and has little to do with platelets.  The major anti-platelet drug on the market today would be Plavix, which I would assume would be much stronger in that regard than Pentox.  And thats why I find Mark's experience puzzling.  But certainly these sorts of experiences should be reported to ones primary care physician for evaluation.  And, in the mean time, all suspect supplements should be stopped.

- George

[Tim468]

One could diagnose a brain bleed with a CT or an MRI of the head. One cannot diagnose that from symptoms like those described (which sounds like atypical migraine to me).

It sounds like a vascular event of spasm of a vessel, but who knows? I have learned as I get older that my body does inexplicable things and pains come and go sharply at times, and if I ride them out, they go away.

To tell (if possible) one has to go to the doctor.

Tim

[Rico]

I have read some doctors have recommended with the verapamil shots to take also propionyl-l-carnitine... I have read that this plc helps with thinning blood... what is the difference in alc?  Has anyone taken this supplement?

Rico

[Tim468]

Here is the reference:

http://cat.inist.fr/?aModele=afficheN&cpsidt=13910563

It is one study, and not that good IMHO. The mechanism of action for PLC is unclear. I took it, along with ALC for some time. I stopped it when I got worse (perhaps because of arginine without pentox), and did not restart it. It can be obtained in bulk from bulknutrition.com (I packed my own capsules).

Tim

[mark501]

 To be clear, I have never used Pentox. I have used up to l000 IU of Vitamin E daily & also up to 2100 MG of borage oil daily. Until I read the recent post about borage oil I did not know of any platelet issues with it. I took it for its anti-inflammatory properties. Will now try to research any blood thinning properties it may have. The bottle of NOW brand borage oil has no blood thinning warning on the label.

[mark501]

Article "BLOOD THINNERS & NUTRITIONAL SUPPLEMENTS":  http://www.drlam.com/opinion/blood_thinners_and_nutritional_supplement.cfm

[George999]

Thanks Mark for the excellent link.  Lots of good advice on that page!  Certainly there is research that indicates that Borage Oil has an effect on platelets.  But it should not be significant enough to cause a problem like you experienced.  In fact this study http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=9107561&query_hl=9&itool=pubmed_docsum would seem to indicate that you where well within safe territory in terms of Borage Oil.  So that takes us back to the Vitamin E, the effects of which are complex and vary from one individual to another.  One issue with Vitamin E is that the body breaks it down into something referred to as Vitamin E Quinone which is an extremely potent anti-coagulant.  So potent, in fact, that it has been suggested for use in place of Coumadin.  And apparently, different people at different points in their lives produce different amounts of Vitamin E Quinone from ingested Vitamin E http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=41118.  But another possibility is that there might be some unknown interaction between Vitamin E and Borage Oil.  Who knows?  But there are no known interactions.  Also for those of us taking broad spectrum E, here is an excellent read on gamma-tocopherol http://www.pdrhealth.com/drug_info/nmdrugprofiles/nutsupdrugs/gam_0115.shtml.  So in effect, gamma-tocopherol is also known to affect both platelets and Vitamin K related clotting factors.  As I have previously posted, I have been taking 2000IU of broad spectrum E with no issues, but different people react differently, thats why we have physicians to try to help us figure these mysteries out.

[wasa]

I have ordered the following supplements to try and reverse my peyronie. Can anyone give advice if it is recommendable to take the following together, especially regarding Acetyl-L-Carnitine & L-Arginine together I have my doubts.
I would put my hopes on L-Carnitine for now based on the following article: http://cat.inist.fr/?aModele=afficheN&cpsidt=1142809

Here's what I'm going to try:

* Natural Vitamin E (2x 250 IU per day, one of my urologists said it was "toxic" if I took 8OO IU per day or more, although he didn't leave a very credible experience in the first place
(combined with Vitamin C)

* Acetyl-L-Carnitine 2g each day (2x 1gram)

* L-Arginine 500mg 2x each day

Anything else I should add, I'm not a big fan of taking drugs (since I probably got Peyronie from taking Finasteride/Propecia in the first place) so I hope this will suffice for me.

[Tim468]

Those sound like good doses. You might want to add propionyl L-carnitine - you can buy it from bulknutrition.com in powder form fairly cheaply. They also sell ALC at a good price.

You might want to go up on your L-arginine dose if tolerated (probably well tolerated). I took about 2 grams a day total.

Some of us have tried a mixture of L-arginine with L-norvaline to block the collagen forming pathway that arginase mediates (norvaline blocks arginase). That should free up the arginine to work in an antiinflammatory way via nitric oxide pathways instead. Those NO pathways can be enhanced by viagra or horny goat weed.

Tim

ps - arginine and norvaline can be found premixed in "Vasoflow"

[misterb]

VasoFlow sounds like a good supplement, I'm going to give it a try. I would appreciate some info from those of you currently using it. How many are you taking? What time of day? With food or empty stomach? Thanks.  

[meanmrmustard]

I have yesterday tried trazodone, which didn´t have the desired effects; although the penis was filled with more blood, it was still far away from an erection. and, the weird thing is, i got a curve, which I don`t usually have and which doesn´t occur when taking viagra or cialis. the curve was immense, like 45 degrees. as some guys have told me that trazodone got them good erections, i wonder why the effect is so different from me, and why it differs so much from the effect of viagra and cialis.

as this is my first post i´ll tell a little about the background of my penis-trouble: i am 23 years old, i had an accident five years ago, where my erected penis was bended. that did it, from that on i had trouble getting and maintaining an erection, and it got worse with time. i started taking cialis and viagra, which allow me to have sex, though the erections are far away from perfection. in time plaque evolved, had a iontoforesis, which improved conditions, but not too much.

so much about that, i´m grateful for having found this forum

one more thing: does anyone know a good europe-based mailorder for drugs?

[Liam]

Strange stuff Mr Mustard.  I'm reminded of the old joke "it only hurts when I do this".  Of course, we know the doctor's answer.  I'd get off of it (trazadone) and fast.  What is good for some is not good for all.  Can't imagine why it would cause a 45 degree bend.

Good Luck

[Hawk]

As one who introduced the trazodone recommendation to this forum, I have closely followed the results of those that post about its effects.

For startes, trazodone DOES NOT typically give good daytime erections.  If it gave you a daytime erection that is a rarity.  It should be taken with food prior to going to bed for solid night time erections for those that have no other way to get solid erections from oxygen rich blood.  In this regard it is much better than ED drugs.  However, I do not know that it has the treatment effect of reducing TGF-1 as ED drugs can.  While it may enhance a borderline daytime erection, that is not the intention and ED drugs work better, even if they are a thousand times more expensive.

It is a fact that all three chambers of the penis are connected by many passage ways.  This means that any blood flow directed to even one chamber will fill all three to equal pressure unless there is a blockage of chambers.  Significant blockage would be rare.  Even if it existed the source of your erection would not vary  blood distribution.  There could be a couple explanations for your newly identified bend.  One reason is the degree of erection.  It is common for Peyronies Disease patients to either see more of a curve on the way to an erection or to see a greater curve with a more rigid erection.  If your erection varied then it would not be unusual to see a different degree of curve.  The second and less happy possibility is that between the time that you got your last comprable erection and getting an erection with the trazodone, you have developed a greater Peyronie's based curve.

To reinforce what I have said, a physician can erect a penis with a shunt inserted anywhere on the penis shaft, meaning in any of the cavernosal chambers.  In my humble opinion, there is NO way trazadone could be responsible for a curved erection.  It cannot limit the distribution of blood to some of the porous cavernoa chambers. It also cannot prevent the tunica from expanding on part of the penis.  These are the only two things that could cause a curve.

Finally there has never been even the suggestion of such an affect in any study, medical literature, or even any recorded anecdotal reports.

[wasa]

I can't find this information very precisely, on the forum, so I'll ask here, can anyone tell me what timing (morning, evening; before, during or after meals?) is the most recommended for taking L-Arginine and L-Carnitine.
Again thanks for the help.

[BentusDickus]

As a new member (who feels like he needs one ), I thought I'd chip in...
I've been on warfarin (coumadin) for about four years following a valve job. The best site I've found for advice on interactions  with warfarin is http://www.warfarinfo.com/ - maintained by a guy with many years of experience at the sharp end (no pun intended) of this capricious drug. Al's site has great lists of interactions with medications, natural products and foods.
Having just started looking around at alternative therapies, I've realised that caution is needed with some of them in this area. Having said that, providing that you get your INR checked regularly - I self test - it's probably possible to cope with most things by "dosing the diet".
Oh, and of course, warfarin doesn't "thin" the blood - just extends the time it takes for blood to clot.
Ron

[meanmrmustard]

The second and less happy possibility is that between the time that you got your last comprable erection and getting an erection with the trazodone, you have developed a greater Peyronie's based curve.

i'm not sure if i have understood everything you've said, however, i can definetly rule out the "second and less happy possibility", as i have had stuffable and non curved erections using ED-drugs after the trazodone-incident. so traz is definetly not responsible for the curve, it just brought it to the light.

as to the curve that i got, it was immense and felt really weird - i touched one part of my penis and from within my penis it felt as if I'd be touching some other part, that's to say, the sensation didn't correspond to the part that i touched. but i have never had these curve before or after, and it does never ocur halfway on the way to an erection. that would take me back to the blockage of chambers ... (?)

[Hawk]

Clearly your chambers cannot block and unblock with your choice of drugs.  I you now observe no lasting changes in your curve, then it is not a structural change.  That only leaves the degree of erection from one drug vs another.

[rcrj]

I have read claims that grape seed extract's anti-oxidant powers combined with full spectrum Vitamin E can provide temporary enlargement to compensate for lost length and girth.  Anyone?  Also, what is the best price + quality full spectrum Vitamin E, and must it be purchased on the Internet or can it be obtained for not much more at your local yocal natural food store.

Robert

[George999]

Vitamin E and Grape Seed Extract both operate primarily thru anti-oxidant mechanisms.  Oxidative stress is known to be major factor in fibrotic diseases as a class.  Grape Seed Extract (often referred to as OPCs) and Pine Bark Extract (referred to as Pycnogenol) are broad spectrum anti-oxidants that quench both nitrogen and oxygen free radicals.  It is these free radicals that interfere with normal Nitric Oxide Synthesis and thus promote fibrosis.  Broad Spectrum Vitamin E is important mainly because its major components work together towards the same end.  d-Alpha-Tocopherol is effective against Oxygen Free Radicals but NOT nitrogen free radicals.  d-Gamma-Tocopherol, on the other hand, is effective against Nitrogen Free Radicals, but not Oxygen Free Radicals.  So the two work together as a team.  The best place I have found as a supplier is iherb.com.  I prefer the NOW brand for Vitamin E since it seems to be of fairly good quality and is very affordable as long as you don't move up to their super premium product (which I haven't done).  As for OPC/Pycnogenol, the best on the market is Flavay which costs a kings ransom, but is produced by the original vendor and is no doubt first class in quality.  I am currently using something that I can afford long term which is Resveratrol + from Country Life via iherb.com.  It is affordable and combines the anti-oxidant power of diverse OPCs, Pycnogenol and Resveratrol all in one package.

- George

[George999]

I have tried so many different forms of Arginine, I've got a shoe box full of nearly full bottles.  Vitamin E has been the supplement most useful to me, but Arginine has been something of an enigma.  Supposedly it should be a good thing, but my results have be extremely mixed.  Sometimes it seems to make things better and other times it really seems to make things worse.  I see it especially with my BP.  Initially it seems to take my BP down, but then when I cut back on it, my BP goes down again as if the Arginine was actually making it higher instead of lower.  It is just such a fickle substance.  I know it has been shown to work well with Pentox (seemingly), but for those of us who are not on Pentox, or at least in my case, it is really turning out to be a mixed bag.  I know I am getting milage out of the HGW and Maca, but for now I am radically cutting back on the Arginine and only using a very limited amount of VasoFlow Arginine Complex.  I am hoping that that will help me move forward from here.  Anyone else noticed weird stuff with Arginine?

- George

[Tim468]

I would echo what George says. Arginine has had a mixed bag of results for me. I could swear that it was paking me worse at one point. I therefore went off of it and a few other things that I was unsure of.

Now, I have started back up on Vasoflow, since I believe that the L-Norvaline is important to prevent the formation of proline and collagen that is the fate of arginine when you have too much arginase (arginase is the enzyme that catalyzes arginine to proline, and norvaline blocks it). Thus, I THINK that the presence of norvaline is going to promote NO-synthase pathways (good!) and not arginase pathways (bad!). So far, I have not seen "bad", but I have not yet seen "good" either... so I am keeping tabs. After settling in on the Vasoflow, I have inched up on my HGW (and it comes packaged with MACA), and have restarted my ALC and PLC. Again, so far so good. My erection quality is good enough to not really want to use or need viagra or cialis, so using that metric, this regimen seems to be stimulating my NO pathways - which should be good for my Peyronies...

So when the hell do I have time left over to exercise!? For that is going to be clearly a component of my improvement. But again - this is not science. I developed Peyronies Disease when IW was about 21 and extremely fit, and years of fitness did not prevent it from progressing, albeit slowly. Interestingly, in the last 5 years my fitness has declined more than ever and that is when it has progressed faster than ever. So I am going to work on it, since that is a good and natural way to enhance NO pathways.

Tim

ps - to rcrj - I have not heard anything about length and girth - only about theories regarding recovery from Peyronies Disease based on anti-oxidant stress reduction.

[ComeBacKid]

Is there anywhere where one can buy just l norvaline by itself?  Is there any special brand one should look for?  I've been sticking with the pentox, my peyronies seems to have not gotten worse at least.  I'm definately going to stick with the pentox religiously, but i'm up in the air on what to do with continuing to take the l arginine, or take l norvaline instead or maybe a vasoflow mix, I still can't afford real viagra. Since the original study done by Dr. Lue was done using just pentox, I wonder why l arginine got all this hype from Dr. Levine anyway?  Perhaps we are over analyzing this and outthinking ourselves with the l arginine, or maybe not.  

Tim,  I echo your being in shape and watching your peyronies worsen, I used to be a cross country runner and in top notch shape, my disease however didn't seem to get as worse back than.  Now that I've put on some stomach fat and was drinking in college my disease got worse, mainly with the shrinking and hardening of the plaque.  I have now quit drinking alcohol totally, but it is way to cold out to run so I try to do situps.  Interestingly enough, reducing stomach fat can raise testosterone by reducing androgen levels.

ComeBackid

[Rico]

I have been picking my pentox up at walgreens...it is only 10 dollars with my insurance and a bottle last about six weeks, this is my last bottle and after four months I will go back to the VED..... I was taking the more expensive sports arginine complexs before, but when started pentox just took the pentox with the ciliais and vit E..... I bought full spectrum e at walgreens also and they had L-arginine from nature bounty in a male enhancement bottle..... I had saw this before and stayed away from it, just embrassed to buy it in this label I guess:)... it has a man's chest/stomach on the bottle, I thought this was strange marketing....anyway I bought a bottle, it says L-arginine as arginine hydrochloride and comes in 1000mg and isn't too expensive.... I use it, took 2000 mg and got good blow flow, as good a response as the more expensive sports complexs I was using...... it can be taken on a empty stomach also.... I like arginine but do like to cycle off of it every six weeks for two weeks..... this hydrochloride, is this a delivery system? It really seems to work, and like I said, it is cheap and easy to take...

[George999]

It is very important to understand the huge complexity of fibrosis and the environments that foster it.  Recently, I have been exploring research into bacteria and their effect on the human body. The normal human gut is home to upwards of 400 different species of bacteria.  Each have their own preference as to food sources and each has their own unique array of healthy and not so healthy substances that they secrete.  Many are essential for human life since they break down foods that the body itself would not be  able to process.  Others are potentially pathogenic and can subject the body to some pretty nasty toxins.  This bacterial population is arranged in a pyramid with a few species at the top in the stomach (and even the mouth) and a growing number of species as one heads south toward the outlet.  One problem can occur with the ingestion of too much of the wrong kinds of food (particularly sugars), the wrong supplements or even poorly formulated prescription medications.  Normally, as food moves down the digestive tract, the sugars are processed and absorbed by the body.  But if something goes wrong with this process, these sugars pass through to the colon where they feed an already teeming population of diverse microbes that then grow out of control from the excess available food (Splenda is suspected of creating a problem in this regard, since the body can't process it, but certain bacteria can).  This toxic population then damages the colon, secretes toxins into the body, AND moves up into the small intestine, causing more damage and further reducing the body's ability to process sugar, adding to the endless loop, and also drives out the beneficial flora that normally inhabits the small intestine.  And there are suspicions that this process can drive fibrosis as well.  So the whole complexity of what we are dealing with becomes pretty mind boggling.  Unless we can get a handle on ALL of these issues, at least to some degree, the battle becomes futile.  Incidentally, beer is famous for initiating this process.  It is a process where the colon becomes taken over by either fermentation (too much sugars) or purification (too much protein).

As for L-Norvaline, it is really difficult to come by.  Unlike many of the other amino acids which are naturally occuring, L-Norvaline is an 'engineered' amino acid.  It is derived from L-Valine, a natural form.  There are a pretty large number of amino acids, I am not sure of the exact number, but whatever it is, it is constantly growing as new derivatives are produced.  L-Norvaline is only available in bulk powder as far as I am aware and is pretty much exclusively used in proprietary formulas.

As for whether one gets a 'response' from Arginine in any of its available forms, I am not even sure that that tells the whole story.  One may get a vascular response, but not a local response in the vicinity of the plaque.  Thus, while the vascular system itself may be infused with Nitric Oxide (which is a good thing), the area of the plaque(s) in question might remain Nitric Oxide starved, or even worse, the Arginine that gets to that area may simply become that much more raw material for the plaque(s), due to the intervention of Arginase.  I am really suspicious of that happening in my case, as there are times when I reduce my Arginine input and my plaque(s) actually seem to retreat and other times when I increase it and they seem to go in the reverse direction.  So at this time, I am really trying to moderate my Arginine input.  It really takes a lot of time and intuitive introspection to try to figure some of these things out and, once again, the underlying processes are so complex that it is easy to take something that, in theory, should work, and end up getting wacked by it instead.

Well, all the best to all of you, I so much enjoy reading and learning from all of your posts.  Each of you contributes valuable insights and as we are able to pool these together, we will draw ever closer to a solution.

- George