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

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Tim468

Not sure I remember. There are definitely different qualities in production, though.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

Iceman

TIM468 - Hi there - so in your opinion san vasaflow is the best quality - i am using musashi

alcohen

http://www.neprinol.co.uk/neprinol_Peyronies.htm

I found this link...what is this all about?  I had not heard anybody mention this.  The article is not dated so I am not sure how relevant the information is but it seemed interesting.  

"By Dr. Theodore R. Herazy
Peyronie's Disease Institute
www.peyroniesmd.com

QuoteIt is important to understand that an enzyme is a protein molecule that either starts or speeds up a chemical process without being used up or consumed in the process that it affects. Enzymes start or continue many thousands of complex chemical reactions that occur continuously throughout the body. They have been called "the fountain of life" because without them life could not exist.    Over 3,000 protein-based enzymes start or speed up over 7,000 vital reactions in the body.  Most enzymes are very specific in what they do; those enzymes of interest to Peyronies Disease - nattokinase, serrapeptase and bromelain - supply growing evidence they have great potential to reduce the fibrous material of the Peyronies Disease scar.

The idea behind taking enzymes to treat Peyronies Disease is to use a natural process of breaking up and eliminating abnormal fibrous tissue and foreign proteins. That's what these enzymes appear to be designed to do - break up the bad stuff that should not be there, like the nasty Peyronies Disease scar. The body has a wisdom that detects the presence of these abnormal cells and tissue elements, and removes them whenever and wherever possible - using enzymes to treat Peyronies Disease takes advantage of that wisdom.  You take advantage of the latest and the best of recent science when you use enzyme therapy to support and stimulate the body's defense system.

Post edited by deleting much of the quote which was a cut & paste from a copyright site selling supplements and printed information.  Administrator

Hawk

Please do not cut and paste pages from other websites.  It has ethical and public relations implications.  Summarize your question or comment and if it is worthy of promoting, post a a link if you must.

(Links to questionable content will be de-activated so as not to promote sites that prey on unsuspecting patients.)
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

George999

alcohen,  This forum has a very effective search function.  If you type "Neprinol" in the search field, I am sure you will get numerous hits that will tell you all you ever wanted to know and probably a little more about Neprinol and Peyronies.  This will spare us going over the same stuff ad nauseum.  It will also work for other products.  If AFTER you read those posts you still have questions, have at it, and we will try to be helpful as much as possible.  Happy hunting!  - George

Tim468

Good point George. OTOH, you could have also just said that Neprinol is useless.  ;D

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

George999

Tim is correct by the way, no one to my memory on this forum has benefited from Neprinol.  I personally like Neprinol.  It has some good uses I think.  But Peyronies is not one of them.  And the company that markets it makes a huge markup on it, so they try to get Peyronies sufferers to buy it.  Some would consider that approach to amount to a scam.  They might be right.  I wouldn't spend my money on it for Peyronies, and I used it for almost a year.  - George

Iceman

TIM468 or GEORGE999,

Quick question - why do I feel pain somedays and I can go without pain for a week sometimes - why is there no consistency with the pain - surely you are either in the acute phase which is therefore painful or not.

Also - does candy/sugary sweets increase inflammation due to the glycation proceess or something??

cheers

George999

Well, I'll take my shot at it, Tim can add his 2 cents later on.  Personally, I don't believe that Peyronies pain is just random, but that doesn't mean that I can explain it.  What you are experiencing fits in with what I have experienced in the past though.  I would suggest that there are a number of factors that input to all of this and when the stars line up, you got pain.  I certainly believe part of that equation involves refined carbs in the role of bad guys.  I also see Omega-6 fats as part of the problem and Omega-3's as part of the solution.  And, of course, things like Vitamin E, ALC and Pentox all push against the pain.  Stress is also a factor in my opinion.  Right now, I am on my anti-glycation diet, along with my anti-glycation supps and Pentox.  While all of this got disrupted some weeks back, I was having a lot of intermittent pain.  But now all that is under control with no pain ever.  I really see pain as a bad sign usually, since it usually means the inflammation is raging.   Best to try to keep it cooled down with the above tools.  - George

Iceman

GEORGE999 - interesting stuff when I am stressed at work the pain issue arises - I do believe that stress plays a role in Peyronies Disease somewhat....on the weekend when I am relaxed then there is little or no pain -----what to do - as I really hate the pain??

ALSO what are some anti-glycation supps??

cheers




Hitman

its also interesting to note that certain food preparation techniques like grilling and frying can increase AGE production. so maybe dietary AGE is something to watch out for.

George999

Hitman,  Definitely fried foods are a problem and I avoid them as much as possible.  Once in a while is OK for a treat and some fried food is much less of a problem than others.  Also, the higher the heat used, the worse the AGE problem.  But the more one can avoid this kind of thing the better.  - George

Iceman,  The number one anti-glycation supp is L-Carnosine.  The others would entail a long list.  - George

Iceman

GEORGE999-

is that L- Carnosine or L-Carnitine???

ALso, I have increased my Fish Oil tablets from 1 per day to 8 per day to try and get the inflammation down... do you think this is a good idea

I also think Fried food adds to the inflammation...

Old Man

Hey guys:

Does anyone have any suggestions on how to keep from getting gasto intestinal problems while taking large doses of Omega 3 fish oil? George999 maybe?

My heart doc put me on 4 1000mg doses per day and it is playing havoc for me with gas and some diarrhea.

Thanks, Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

Iceman

GEORGE999/OLDMAN

can anyone recommend a place to buy  L- Carnosine  - downunder??

George999

Iceman,  It's L-Carnosine, NOT L-Carnitine.  They are two completely different supplements.  L-Carnosine protects the body from glycation by creating a teflon like coating on protein that keeps glucose from sticking to it (or at least that is how it is thought to work).  It is the most basic of anti-glycation supplements.  I am taking 500mg per day.  The body DOES break it down, so there is concern that too much might not be a good thing either though there are no known toxicities associated with it at this time.  Nevertheless, a little bit probably goes a long way.  (And it is expensive as well).  I am not really knowledgeable as to your sources down under.  I should think that it should be available somewhere in Australia since it is such a common supplement.  In any case, iherb in Los Angeles will, I believe, ship to Australia and they carry virtually everything in terms of supplements.   - George

Old Man,  I generally prefer Flax Oil to Fish Oil for Omega-3's, but I think that your doc probably wants you to have the blood thinning effect of Fish Oil as well which Flax Oil doesn't provide.  So I am kind of at a loss as to how you might deal with this.  It actually might just resolve itself over time as your gut has a chance to adjust to the dietary change.  Thats how it works a lot of times with dietary issues.  - George

Iceman

GEORGE999

How come Ive never heard of this mentioned here only L CARNITINE... do you think I should buy some CARNOSINE? Does it work?




Kimo

OLDMAN,,,,,,I have been taking 1200mg of fish oil twice a day for a long time and with it i take a Pro-Biotic twice a day and i never have experienced any gas problem...This probiotic stuff is really great...I can't live without it.

It's not cheap,,,but its worth it..The brand name is  Garden of Life,,,,--Primal Defense---I usually buy the 180 tablets ,,it lasts me about 3 months....I will try to find the website and get it posted for you...

Kimo


Hawk

Without taking time to pour through the specifics, flax oil is usually not recommended by nutritionist for men because there are studies linking it to prostate cancer.  Although the final verdict is still out, the data is troubling.  

Any internet search with both the terms will give tons of data.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Hitman

i prefer flax lignans myself but they do have issue with testosterone i believe

Old man, try using enteric coated fish oil.

George999

The study showing Flax seed meal lowering T was done in mice, not humans.  A later study done on humans is said to have shown no effect on T one way or the other.  And while it is true that Flax Oil does cause some increase in Prostate Cancer risk, Flax Lignans, often included in Flax Oil supps actually reduce Cancer risk.  The reality is that many supps that lower inflammation also raise cancer risk.  There was recently a case of a woman dying of lung cancer.  The docs took her off of her anti-inflammatory arthritis meds in order to prepare her for chemo.  In an amazingly short period of time, they did imaging to assess her status, only to find that the cancer was completely gone.  In the case of most foods that are anti-inflammatory, such as flax, the food itself has anti-cancer agents which tend to balance out the cancer risks that accompany anti-inflammatory mechanisms.  After all inflammation is tightly tied to immune function.  You can't inhibit one without in some way inhibiting the other.  So I try to concentrate on making sure I get my supps in whole food form as much as possible.  I also try to fight cancer risks in the larger sphere rather than trying to sort out which foods bring risks.  It is pretty much known that reducing calorie intake fairly dramatically reduces cancer risks.  If you Google the terms "calorie restriction" and cancer, so will get some pretty interesting responses.  In fact, I would be as bold to assert that calorie restriction can arrest a cancer already in progress.  I think it is a fascinating field of study ripe with opportunities in terms of cancer prevention and treatment.

Also some say that Flax Supps can reduce Zinc and Magnesium levels in the body, so it might be good to include those with the Flax products.  I am currently supping with Zinc.  I probably really need to get back on the Magnesium as well.  Also, elevated, but within normal serum calcium levels have been found to be something of a marker for Prostate Cancer risk.  Lots of new information coming out the research pipeline these days.  - George

George999

Quote from: Iceman on September 04, 2008, 11:41:35 PM
GEORGE999

How come Ive never heard of this mentioned here only L CARNITINE... do you think I should buy some CARNOSINE? Does it work?





Iceman,  I suggest you type "carnosine" into the search box above and carefully read the posts all the way down the page.  This will bring you up to speed on Carnosine as it has been discussed previously on this forum.  Then if you still have questions, I will be more than happy to attempt to give you an answer as best I can.  - George

Ironman

Hello anyone, and thanks for the forum. Got Peyronies Disease & Dupuytrens, the latter probably from strenuous guitar playing (DD in the left, fretting hand, which, aside from a burning sensation inside the palm, is not constricting).

I take my fair share of supplements, and have my doubts about their potential, whether enzymes or vitamins or amino acids, etc ... Some, like fish oil, most peeps should take anyway; and if nattokinase along with it helps overall circulation that's great. Note: flax, especially with "lignans", contains, like soy, "pseudo" estrogens, and may not be good for men to ingest regularly.

Fishoil notwithstanding, I have to wonder, just how plak (as I prefer to spell it) can BE REMOVED by supplements? Not sure than many posters understand the nature of "plaque" ... It isn't like adding so much Draino to a clogged pipe, or heat, or massage, and, after some "detox" symptoms (that you'd welcome as a good omen), the plak gets carried off to be "eliminated". In many if not most cases of Peyronies Disease, the pipes themselves have become the plak--hence, sigh, surgery.

At 60, lean and seemingly otherwise healthy (who knows what's brewing)--having observed a healthy "lifestyle" for decades--no drugs, alcohol, smoking, junk foods--I also wonder if my accumulations of plak, in penis and hand, represent other unseen deposits in more vulnerable places--arteries, organs.

I fear Peyronies Disease, at least in my case, is not going to just go away, no matter how much Neprinol I take. If a chemical (enzyme or drug) is injected into the penis to dissolve plak, I think this dissolved (hydrolized "fibrin" --a misnomer, IMO, when referring to Peyronies Disease) plak must then be physically removed, in a way similar to liposuction. If the plak is "calcified" a protease or collagenase, wont dissolve it, not the calcium part of it anyway. Hence, sigh, surgery.

Thanks for listening ...
Live Long and Prosper \\//

George999

Ironman,  Peyronies is caused by inflammation, glycation and calcification.  Without addressing those issues, no treatment can hope to be successful.  The ONLY supplement that I am aware of with legitimate research behind it showing that it can help with Peyronies is Acetyl L Carnitine.  But it has to be used in conjunction with a lifestyle that minimizes inflammation.  That means sufficient exercise, restricted calorie diet, and other supplements that help in reducing inflammation.  Things like natto and Neprinol are great for some things, but are absolutely useless for Peyronies.  Peyronies, like other forms of fibrosis consists of tissue protein gummed up with sugar.  The best drug treatment for Peyronies is Pentoxifylline which has actually been shown to even get rid of calcifications.  But here again, it takes more than just the Pentoxifylline to do the job.  Its an uphill battle but it can be won.  And new drugs are on the horizon.  There is Alagebrium to kill glycation and Xiaflex to disolve the plaques.  Xiaflex, incidentally, is proving useful in trials for treatment of Dupuytrens.  - George

Iceman

GEORGE999 -

I bought some beta alanine as i thought it was L Carnosine - what is the difference and will L Carnosine help with Peyronies Disease - I mean what does it do to aid me in this  - I did go through the threads here but couldnt really pick anything from them - I would appreciate your help with this as i may have wasted money on the beta alanine..


Thx

George999

Iceman,  Beta Alanine is one of two components of L Carnosine.  I believe that L Carnosine helps with Peyronies by preventing glycation and by being a very good anti-oxidant.  It also is believed to have anti-fibrosis qualities according to some of the research that has been done on it.  That is the best that I can tell you.  Some sites are promoting Beta Alanine as being equivalent to L Carnosine but there is research out there that demonstrates it is not.  That is the best that I can tell you.  Certainly L Carnosine is not at the top of my priorities.  My top priorities in terms of oral treatment for Peyronies would be Pentoxifylline, Acetyl L-Carnitine, and Full Spec Vitamin E at this point.  - George

Fred22

I'm 64 years old.  Been experiencing penile pain since April of 2006.  Brief Summary:
May 2006:  My GP (actually a nurse practioner) prescribed 10 day course of Cipro which did no good.  2006-2007  3 trips to board certified urologist for yearly PSA and rectal prostate exam plus a cystoscopy. No problems were found.  On each visit to uro I mentioned the pain and he basically said he didn't know what could be causing it and offered no further tests or treatment. Took a very casual attitude.  In the meantime I'm in almost daily pain and taking 800 to 1000 mg. ibuprofen almost every night.  
April 2008:  Woke up one morning with a partial erection and noticed an upward curvature.  I immediately concluded "Peyronie's".  It was again time for my yearly prostate exam so this time I decided to go to a different uro.  I'm in Memphis and the University of Tennessee Med Group is supposed to have some of the best drs. in the area.  I called one of their urologists (in fact I think he's the chairman of the urology dept.) and before making an appointment, made sure that he was familiar with Peyronies Disease and had a treatment protocol.  This Dr. is a professor at UT Med school and practices 2 days a week.  I was assured that he was well versed in the treatment of Peyronies Disease. Now I'm thinking I'm on the right track.  I saw him last week and he felt my penis and said that I had a small amount of plaque at the base.  Diagnosis: Peyronie's.  He immediately said that "We need to get you on 400 mg. vitamin E per day to soften up the plaque and come back in 6 months".  He said something like 50% of cases stay the same, 25% get better and 25% get worse. I mentioned Pentox which he had never heard of. Said it wasn't mentioned in any of the research lit. that he had read. To his credit he didn't want to do any kind of injections, even to induce an erection as it could cause further scarring. He said to take a picture. He was familiar with Verapamil and said that some of his patients had said that they had improved using the transdermal type. He said "The mind is a very powerful thing", leading me to believe that he didn't have much faith in Verapamil and that these patients were merely experiencing the placebo effect.  He said he could give me a script for a VED, but that if I can get an erection then I really don't need one.  I'm able to get a firm erection, but my wife and I have had little sex in the last 2 years due to the pain.  He encouraged me to have sex as that could be beneficial.  He went on to say that there is very little research in this area as all the research funds are going for cancer and heart research because those are the big killers in our society.  I asked him if he had heard of the Auxilium clinical trials with Xiaflex and he hadn't.  
So at this point I'm supposed to take 400 mg. of vitamin E and go back in 6 months.  My PSA had gone up from 2.2 last year to 3 and he seemed more concerned about that, but I've read that I'm in the normal range.  My question for you guys is, "What do I do next?"  I've read very "mixed reviews" about vitamin E and was disappointed that this was all he had to offer.  I plan to go ahead with the vit. E.  What's the best type to use? (Mixed tocos, alpha, gamma, a good brand and place to order it on the net, and any further suggestions from anyone on this forum.)  The pain subsided somewhat in May of this year and I'm no longer taking the ibuprofen although I'm experiencing some pain almost daily. Sometimes aching, sometimes burning either during urinination or afterwards (my urine sample was clean). The Dr.said that with Peyronie's I should only be feeling pain when erect, but I've read many posts on this forum that seem to contradict that.  Anyway, sorry for the long post, but any suggestions would be greatly appreciated, especially about the type of vit. E and other options.  Thanks.

Fred        

Jazz

Hi, guys.  I'm the partner of a person with Peyronie's, Dupuytrens, and Ledderhose/plantar fibromatosis. He has already had a tumor removed that pathology defined as fibromatosis, but these we have seen that these disorders are all collagen inter-related after doing extensive research.   I was wondering if anyone has heard of Pau D'arco, or had tried it.  The American Cancer Society and several universities have articles on it, if you google the name.  While very controversial (as many of the treatments are), I wondered if it might work on those whose Peyronies may be the result of fibroses, as opposed to injuries. We have no idea about my partner's cause or state of condition yet, since we haven't found a doc around here who knows much about any of these conditions.  We are still waiting to hear about an appointment with a specialist on Peyronies.  I found a couple of links saying the tumors had reduced/disappeared, or did not recur while on Pau D'arco.

Any thoughts?  I was going to go get some of the natural products mentioned in this subject for him to try, but haven't yet, was not sure which to try first.   Vitamin E seems to be of no effect other than to upset his stomach, and with recent articles on that, he is wary of taking more.

Thanks,
Jazz

George999

Jazz,  First of all you have to understand that fibrosis and cancer are completely different processes.  Fibrosis is driven by over active immune processes and cancer thrives on under active immune processes.  The most popular treatments for Peyronies are classic anti-fibrotic approaches.  Vitamin E, Acetyl L Carnitine, and Pentox rank at the top.  In the case of Vitamin E, the typical synthetic type that you find everywhere is useless.  The best shot for Vitamin is the full spec version that consists of 400IU of NATURAL alpha tocopherol and around 300mg of natural gamma tocopherol.  Taking more than 800IU per day is not helpful and can be harmful.  Acetyl L Carnitine actually has a study showing it to be effective against Peyonies.  I am currently taking 500mg 4X per day.  And Pentoxifylline is a classic fibrosis treatment commonly dosed at 400mg 3X per day.  These treatments tend to calm the production of cytokines that stimulate tissue accumulation.  All of these products are best taken with food so as not to upset the stomach.

Also, if you tell us in what area you are located, someone here might be able to suggest a doctor.  - George

wayne999

Quote from: jackisback on August 15, 2008, 10:53:33 PM

I feel that coffee may be one of the worst things for this too.

Is the verdict still out on this? George999 why is coffee a bad thing for Peyronies Disease?

George999

Quote from: jackisback on August 15, 2008, 10:53:33 PM

I feel that coffee may be one of the worst things for this too.

Quote from: wayne999 on September 12, 2008, 09:10:52 PM

Is the verdict still out on this? George999 why is coffee a bad thing for Peyronies Disease?

Personally, I'm not sure it is all that bad.  Nevertheless, I avoid it.  I does have caffeine along with healthful antioxidants and caffeine is a stimulant which I don't see as being good for Peyronies.  Stimulants put a certain stress on the body and can do things like raising blood pressure.  I much prefer cocoa which has more beneficial components and far less caffeine.  - George

Iceman

GEORGE999  - can you please post the link with the study that shows the positive effects of ALC on Peyronies Disease mentioned on your most recent post

cheers

George999

Here they are:

These results suggest that acetyl-L-carnitine is significantly more effective and safe than tamoxifen in the therapy of acute and early chronic Peyronie's disease.

Intraplaque collagenase, intraplaque verapamil, intraplaque interferon, oral acetyl-L-carnitine, oral propionyl-L-carnitine and oral colchicine have proved effective in Peyronie's disease.

Oral drug therapies include potassium para-aminobenzoate (Potaba), vitamin E, colchicine, tamoxifen, propoleum, acetyl-L-carnitine, and propionyl-L-carnitine.

Placebo-controlled studies examining these agents have failed to show a consistent beneficial effect on Peyronie's disease, with the exception of para-aminobenzoate, which may decrease plaque size and curvature, and acetyl-L-carnitine, which may reduce erectile pain and inhibit disease progression.

With ALC as with other treatments, some people and docs just write them off because they don't always *seem* to work.  When people treat with ALC, for example, they expect the Peyronies to "get better".  They don't give any credit to the ALC if things just stop progressing and stay the same.  Another big problem is that people expect a solution in a pill.  They are unwilling to make the kind of general lifestyle changes and to employ multiple treatments.  Thus, ALC may work well in someone getting sufficient exercise and adhering to a Mediterranean diet, yet seem to utterly fail in the case of someone who continues to eat junk food and use recreational drugs on the side.  - George

Hitman

would be interesting to know which form of Vitamin E they were using in that study?

Tim468

Thinking about it, the "Mediterranean Diet" may be why those Italians do so much better with certain interventions. Either that, or the docs fake the results for personal gain and glory...

Tim    :P
52, Peyronies Disease for 30 years, upward curve and some new lesions.

wayne999

Is the Musashi L arginine strong enough? I noticed in the John Turtle MD website he says L-Arginine 400 mgTID. Is this strength something you need a prescription for?

ICEMAN: Please delete messages from your inbox, I can't send you PM's as your inbox is full.

Fred22

Tim and George,

I just went to GNC and got the 400IU GNC Isomer E. Iwas told it was the most easily absorbed and also provided the most antioxidant effect.  On the front it says "Nature's perfect blend of vitamin E" "Supplies all 8 tocopherols and tocotrienols". Here is something that I don't understand: It say's "Laboratory testing confirms that Isomer E demonstrates at least 100 times more antioxidant capacity than synthetic vitamin E and 100% more than natural vitamin E".   If it's not synthetic and not natural what is it? It does say it supplies the full spectrum of vitamin E.  Is this one OK?  It says take one a day. Is that what you'd recommend?  Thanks.

Fred

alcohen

Honestly, I would find someone else right away.  You can start taking the vitamin E for better health, but from what I have learned on here from a variety of posters is that it really does nothing for Peyronie's Disease.  Everything about this disease is extremely annoying, particularly the actual part of finding a doctor who knows enough to try and help...

Tim468

Fred, You are doing all the right things. I guess you might need to start looking for a doc who knows more than the one you found first.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

Iceman

wayne999 - Im on Musashi L-Arginine and it seems fine - but what do I know?? - I ve also ordered L-Carnosine from www.iherb.com as it seems to also work for Peyronies Disease - george999 recommended it - you just gotta keep plugging away - al least my pain has subsided a bit over the last couple of weeks - thank god for that as the pain was getting unbearable and really getting me down - now theres hardly any pain --and i think the VED after 4 months usage is staring to work or maybe its just wishful thinking. alos I have radically altered my diet - no sugars - no crap food all healthy from now on - I think that the food you eat has an effect on Peyronies Disease - anyone have any thoughts on this point??

cheers

Hawk

Note Fred's vitamin E question below moved from another topic.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

bodoo2u

I'm not sure why, but my uro has given me my last prescription for pentox, which will leave me two months short of the 8 months that forum members said is needed for the drug to improve peyronies disease.

I'm going to try to find another uro or internist who might prescribe it for me before my prescription runs out, but in case i don't can anyone tell me how to determine of the pentox i would purchase from online pharmacies is actually what is claims to be. if i purchase it from a Canadian pharmacy is that illegal.

i look forward to your responses.

Bo

George999

So far I have identified three substances that boost TNF-Alpha activity which *should* be good for dealing with Peyronie's:

1:  Vitamin D3
2:  Garlic
3:  Noni

- George

Iceman

gEORGE999 -


do you recommend adding D3 to the growing list of supps i am taking??

George999

I'm just sharing what I am now looking at.  I find this whole TNF-Alpha revelation to be fascinating and would like to try to exploit it a bit and see what effect it has and share how it is working out for me as I go along.

I think the one caution about D3 is that for most people it is perfectly safe in quite large doses BUT there are exceptions.  Some people have specific conditions that result in ANY amount of oral D3 to cause them problems.  So I don't recommend large amounts of D3 without your doc knowing about it and approving it.

AND, I have to emphasize again, I AM NOT A DOCTOR, so please don't consider me to be some sort of infallible expert on these things.  On occasion I can likely be helpful in sharing what I have learned (or think I have learned), but I get really nervous when I get the sense that people are betting there very lives on my perceived expertise.  So please consider carefully any supplements you plan on taking, and check them out yourselves before you commit to them.  I am not going to intentionally try to mislead or harm anyone, but I have made mistakes in the past and will probably make more.  If I suffer because of my own goof, I can swallow that, but I would feel really badly if someone else suffered for trying to follow what they perceived to be my advice.  - George

Iceman

GEORGE999.

So this is what I am taking:

ALC
L Crnosine
L Arginine
Vitamin E
Pentox
Fish Oil
Beta Alanine
VED

Is this enough - or am i taking too much??

I am happy to be the guinea pig - let me know what else i should take???

Tim468

I think of TNF as a pro-inflammatory cytokine.

Pentox also is well known to inhibit the release of TNF in experimental models.

Why do you think it might be a good thing, George?

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

George999

Tim, this certainly does represent a shift in thinking on my part.  As you point out, I think the whole TNF-Alpha issue is open to discussion.  That is why I recently issued something of a warning about blindly following me down this path.  To be honest, the supplements I am most attracted to at this point, in terms of TNF-Alpha, are not so much the ones that simply increase its levels, but rather the ones that are immunomodulatory, that is, the ones that tend to increase its effectiveness and specificity, so that it targets what it needs to target and does its job rather than assaulting healthy tissue.  D3 is the outstanding example in terms of what I am referring to.  With sups like D3, all the research is indicating that the upside is huge and the downside, while certainly present and not to be ignored, is minuscule.  I suspect that in the case of Peyronie's, TNF-Alpha is not doing its job correctly in terms of regulating things like fibroblasts.  But I am certainly open to guidance on this concept.  I think one of the great things about this forum.  It allows us to present and discuss these concepts.  - George

George999

Most potential Peyronie's treatments could be conceptualized in some broad categories.

1)  Antioxidants - Peyronie's involves a process of oxidation that is destructive to tissues.  Antioxidants quench the free radicals that contribute to this process.

2)  Antiglycants - Peyronie's involves a process of glycation.  The more we can do to impede this process, the better will be our progress.

3)  Anti-inflammatories - Peyronie's involves a process of uncontrolled and inappropriate inflammation.  Anti-inflammatories can be used in an attempt to calm this undesirable reaction.

4)  Immunomodulators - Peyronie's involves inappropriate immune system activity wherein our own immune system attacks our own tissues.  Immunomodulators help our immune system to distinguish the good guys from the bad guys, thus avoiding biological friendly fire casualties.

Number 4, of course, is the new one on my list.  A number of guys have posted here in the past suggesting an autoimmune aspect of Peyronies.  At times, we, myself included, have just brushed them off and not really given this aspect enough of our attention.  But lately, research reports involving immunomodulators like Vitamin D3 have been hitting the news wires furiously and it has been virtually impossible for me to ignore them.  The latest is a finding that Vitamin D3 deficiency is predictive of multiple sclerosis.   MS is a disease wherein the immune system attacks the sheathing or insulation covering the nerve fibers, producing lesions (plaque) that impairs their functions and, in the process, creates a great deal of inflammation.  The lower one's Vitamin D3 status, the more likely they are to succumb to MS.  It involves different tissue than Peyronie's and different aspects of the immune system, but there is a parallel that can't be ignored.  What we are learning also is that it is possible that these things can happen as a result of a minor bacterial or viral infection.  A bacteria, for example, can maintain a chronic infection that attracts and stimulates the body's immune system.  But some bacteria are capable of "hiding" from the immune system through certain stealthy techniques.  For example, some of them emit toxins that block key immune system receptors in their vicinity.  In these cases the immune system may attack healthy tissue in a desperate attempt to find the bad guys.  Friendly fire.  Once healthy tissue is inflamed, the signal goes out, "we found the problem", and reinforcements arrive.  Not a good scene.  Immunomodulators help here because they can help the immune system to see through the smoke and better differentiate the good guys and the bad guys.  This is why, perhaps, in some cases, an anti-biotic might seem to help in the case of Peyronies.  If it can knock out a pathogen that is overstimulating the immune system, the collateral damage may cease.  In addition to D3, there is the old standby, Garlic, and Melatonin.  More and more research is revealing the immunomodulatory capability of melatonin.  Melatonin is released when we are subjected to darkness and when we are sleeping.  Younger people generally are able to produce sufficient amounts of melatonin and do not need supplementation.  That is why younger people are able to sleep very soundly.  Those of us older that 50, however, gradually lose our capability to produce sufficient melatonin.  At this point I am taking a melatonin product before bedtime that contains 1/2 gram of instantly released melatonin and 1/2 gram of slow time release melatonin.  This gets me about 4hrs of sound sleep.  I am now considering possibly trying an additional dose at the time I usually awaken after that initial four hours.  I consider sound sleep to be very healing and a lot of us, especially the older ones among us, don't get enough sound sleep.  Interestingly, in both the case of Vitamin D3 AND Melatonin, there is a curious MS connection.  1) People in latitudes with the most sunlight exposure are generally less likely to get MS and 2) the worst MS outbreaks occur in the summer during times of less darkness.  At this point there is an emerging causative link in both the case of D3 and melatonin.  Additionally, all three are known to be preventative in terms of cancer.  It is still unknown as to whether they can be used as effective treatments.  Nevertheless, I am going to try them.  I have been actually using them on and off now for some time, but now I am going to begin to make a concerted effort to use them strategically together to see if I can find them helpful.  None of them are really very expensive, nor potentially very harmful.  If anyone can come up with any additional immunomodulators, that would certainly be of interest.  - George

Note:  There is some evidence that too much melatonin can actually induce autoimmune reactions, so one should be careful with melatonin.  There does not appear to be the same danger with D3.  - George

George999

Quote from: PubMed Most organs and immune cells have a vitamin D receptor, and some also have the capacity to metabolize 25-hydroxyvitamin D to 1,25-dihydroxyvitamin D. 1,25-Dihydroxyvitamin D is a potent immunomodulator that also enhances the production and secretion of several hormones, including insulin. ... Children and adults need at least 1000 IU of vitamin D per day to prevent deficiency when there is inadequate sun exposure.  (Referrence)

Quote from: PubMed Ultraviolet radiation is the major cause of skin cancer, but promotes vitamin D synthesis, and vitamin D has been inversely related to the risk of several common cancers including prostate, breast and colorectum.(Referrence)

Quote from: PubMed Over the past two decades, it is now recognized that vitamin D not only is important for calcium metabolism and maintenance of bone health throughout life, but also plays an important role in reducing risk of many chronic diseases including type I diabetes, multiple sclerosis, rheumatoid arthritis, deadly cancers, heart disease and infectious diseases. ... This review will put into perspective many of the new biologic actions of vitamin D and on how 1,25-dihydroxyvitamin D is able to regulate directly or indirectly more than 200 different genes that are responsible for a wide variety of biologic processes.(Referrence)

Quote from: PubMed Vitamin D functions in the body through both an endocrine mechanism (regulation of calcium absorption) and an autocrine mechanism (facilitation of gene expression). ... Recent data indicate that cholecalciferol (vitamin D(3)) is substantially more potent than ergocalciferol (vitamin D(2)) and that the safe upper intake level for vitamin D(3) is 10,000 IU/d.(Referrence)

Quote from: PubMed There is growing interest in the contribution of vitamin D deficiency to autoimmunity. ... A number of recent studies have highlighted the association between systemic lupus erythematosus and vitamin D deficiency. Vitamin D deficiency skews the immunologic response towards loss of tolerance. Adding vitamin D in vitro reverses immunologic abnormalities characteristic of systemic lupus erythematosus.(Referrence)


Quote from: PubMed Vitamin D, besides having well-known control functions of calcium and phosphorus metabolism, bone formation and mineralization, also has a role in the maintenance of immune-homeostasis. The immune-regulatory role of vitamin D affects both the innate and adaptive immune system contributing to the immune-tolerance of self-structures. Impaired vitamin D supply/regulation, amongst other factors, leads to the development of autoimmune processes in animal models of various autoimmune diseases. The administration of vitamin D in these animals leads to improvement of immune-mediated symptoms. Moreover, in human autoimmune diseases, such as multiple sclerosis, or rheumatoid arthritis the pathogenic role of vitamin D has been described. The review aims at describing the complex immune-regulatory role of vitamin D from the cellular level through autoimmune animal models and depicting the known contribution of vitamin D in the pathogenesis of human autoimmune diseases.(Referrence)

Quote from: PubMed This study suggests that vitamin D is associated with a reduced risk of breast cancer regardless of ER/PR status of the tumor.(Referrence)

Above are samplings from just a few of more than 100 papers released THIS MONTH ALONE on Vitamin D issues.  Perhaps you can see in this why I am currently really excited about the potential of Vitamin D in the case of Peyronie's which has some major autoimmune characteristics.  Vitamin D affects risk for just about every disease on the map because it is tied directly to proper genetic expression.  The huge importance of its role in the human body is just now beginning to be understood by the medical community and the studies concerning it are rolling out at an unprecedented rate.  I hope this little taste stokes your collective imagination as to the possibilities these discoveries present for us!  - George