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

[Thin Man]

Thanks for the feedback everyone, I will proceed with caution and continue to search for answers, but so far I haven't seen this much Arginine (21 grams daily!) recommended by anyone, anywhere. I have an appointment with Dr.Wessels in Seattle but not until six weeks from now (unfortunately, despite pleading with all my heart). I'll have many questions for him. I posted my high dose Arginine question on peyroniesassociation.org's "ask the doctor" section about a week ago. We'll see if someone responds.

Thanks also for the Vaso Flow tip - yes it was on my list of things to check out. Is $42 a good price for 360? I may have to get these online, my local health markets don't have it.

I haven't noticed any huge amount of increased blood flow from Arginine. Some yes, but I'm not sure if it's from that or other supplements I've been taking (see below) or from acupuncture treatments, maybe all of these. Then again I've got arterial blockages from 2 old injuries and an attempted bypass which was not a great success. Sounds like I'd better get the Vaso Flow and whatever else you guys might recommend to get the blood flowing, since that's my number one problem. My morning erections are rarely very rigid, it's been that way for years and as I understand that's a big risk factor for what I'm facing now - brand new hourglass deformity (it's been 5 weeks, seems to be permanent) and my erection quality seems to be declining the past 2 weeks - I dearly hope it's just anxiety, but I think something is changing for the worse.

Hawk - thanks for asking about my injury, more coming on that. Where should I post it? - Progression topic?  Sometime I'll write a longer blurb for the Histories topic but I don't have energy for that now.

Thanks also for making sure I know about PAV - yes I've seen that discussed many times here and I've read Dr. Levine's book, looked over his "ask the Doctor" page, etc.  

For what it's worth I haven't had any stomach problems with the Arginine so far, nor any issues with L-Carnitine, Vitamin E and Bromelain which I've been taking. Pentox is quite another story - coming in my next post.


In gratitude,

Thin Man

[Thin Man]

Has anyone tried Stimulin? - or for that matter similar products found on Dr. Herazy's Peyronie's Disease Institute site? I've seen a few good reviews of their products here, but fewer than I would have hoped. Evidently Stimulin contains L-citrulline, allegedly more effective than L-Arginine. Unfortunately they say it's proprietary and don't list the ingredients which is really annoying - they do for about 6 other related products, most of which contain Ginseng, which I'd rather avoid.

My problem is not libido (unless it's crushed by despair). Mainly I'd like to know what is recommended for increasing blood flow. I fear my ED will put me at greater risk for further damage. I can't afford large quantities of Viagra and would rather avoid it on a normative basis anyway since I don't like the side effects. Less so with Levitra and Cialis, but still these don't make me feel good and are costly. I haven't tried HGW yet which seems to be popular - any product recommendations?

Also I'm contemplating ordering Dr. Herazy's Message and Excercise video. Any thoughts?

Thanks so much,

Thin Man

[Attica!]

   The number of herbs, vitamins, and "proprietary medicines" out there in the Peyronies Disease treatment world is mind-boggling and mind-numbing. And really, how many have received any positive results? There are the tried and true triumvirate of Pentox, L-Arg  and E. And it looks like Vit D is a worthy addition. But to my mind (and pocket book) that is about all I would be willing to pay for.
  IMHO traction/VED with the aforementioned vits and Pentox make for a very manageable, cost-effective treatment plan.
  I have been to that Dr. Harazy's web site and found it...hmmm, let's just say...less than inspiring.
  Hopefully, with the new administration the FDA and other government regulatory agencies will be able to grow a pair and stop a lot of the deceptive and misleading products and information out there.  

[Ted Williams]

Hello Thin Man.

I had good luck with blood flow and Nattokinase purchased at Dr. Herazy's web-site.  I used to get cold hands... Once I took Nattokinase for a while, it stopped.  I noticed the difference physically, once I started taking it.  

Ted.  

[Thin Man]

Attica! - Thanks, I'm grateful for the feedback. I'll have to look into Vitamin D.

Are Pentox and Arginine really "tried and true"? I'm just getting started with this but everything I've encountered so far from medical sources comes packaged with skepticism. On peyroniesassociation.org the blurb for Pentox states "At this time there are only a few case reports which have indicated improvement of scarring and possibly reduction of calcification in Peyronie's plaques, but these have not been confirmed in any multi-center or large-scale controlled trials." Also their Arginine description states "there is no evidence from a placebo-controlled trial that there is any benefit."

Nevertheless I'm trying both. Doing nothing is not an option.

I'm giving Pentox a second try, just one a day to see if I can adjust. It makes me tired and gives me mild vertigo. The tingling in the legs is pretty weird. Anyone have any advice? My pharmacy instructions say I shouldn't break them in two - does that defeat some kind of time release function or can I safely break them?

Also I've got the generic Pentox, not Trental. Any disadvantages for the generic?
 
Thin Man

[Thin Man]

Thanks so much Ted,

I'm about fifty fifty on Dr. Herazy so far, haven't ordered anything yet but I tend to be sensitive to many prescription meds - so I'd really like to find alternatives.

I searched this site for Nattokinase and found this, from George999.

One area I am backing away from is the whole anti-fibrotic scene with Neprinol, Nattokinase, etc.  Recent studies have indicated that antifibrotic strategies my actually backfire on the user and may actually, through some unknown pathway actually make the problem worse.  So at this point, I am becoming more cautious with that approach.

Yikes! Any more info on this anyone?

For that matter I've been taking about 4 grams of Bromelain for the past three weeks, during which time my condition has worsened. (Then again it could be due to discontinuing Pentox, or neither of these factors, who knows?). Bromelain was recommended to me as a healthier anti-inflammitory than Advil. Bromelain appears to be a similar enzyme to Nattokinase.  

Thin Man

[nemo]

Hawk, I'm taking lots of supps too and, like you, can swallow a frightening amount in one big gulp.  The thing about Vasoflow that grosses me out is not the size, or even the smell, but the disgusting oil they're coated in.  I haven't looked at the label to see what it is, but ... yuck.  I occasionally will pour a bunch out and literally dry them off with a paper towel and put them in another container so I have a few days worth of un-slimy Vasoflow.  For instance, if I put Vasoflow in a plastic bag with some other supplements (to take to work, for instance), if I don't wrap them seperately or dry them, they "slime" the other pills/capsules.  

Just random complaining, I don't doubt it's good stuff - I just hate the taste/smell/slime.  Nothing I can't live with though.

Nemo

[Attica!]

Thin Man,
  As far as Pentox and L-arg being "tried and true", I meant that those two along with Vit E seem to be the most acknowledged as "safe". By safe, I mean you know what you are getting and doing to your body. A lot of the other vits, chinese herbs, and proprietary medicines can be confusing and you never know what their potency, quality, etc. is.
  But, while we all have to remain optimistic, we must also be realistic. And I have yet to read anywhere that someone took Pentox or L-arg or anything and bingo-bango, eight months or eight years later their Peyronie's was completely gone and their penis was straighter and stronger than ever. Sad to say, it just doesn't happen. At least not yet (still trying to stay optimistic).
  I remember when I first noticed my upward bend and curve to the left, it was Sept. 6, 2007. I was away for a long weekend with the woman I was dating at the time. We were having sex and I looked down and saw the bend and thought "WTF is that?". It just happened in an instant. One minute straight, the next minute, pointing north. When I got back home on Sunday night (Sept 9) I Googled "bent penis" and was hurled head first through a brick wall...Peyronie's Disease. I was stunned, scared, angry and filled with the "why me?" that we all go through. On Monday I called and made an appointment with a urologist (couldn't see me until the 17th) and then the official pronouncement was made. In the time between waiting for the Dr's appointment I must have spent 8 hours a day reading everything I could on the internet about Peyronies Disease.  
  After digesting everything I decided to go with traction, Pentox, L-arg and Vit E. My results have been posted on the traction pages. (My urologist, while claiming to have treated a lot of Peyronies Disease patients, just sort of sat there and said "Well, what do you want to do?" Good thing I was fore-armed with all my crammed information.) I took Pentox for the first 6 months, but when the prescription expired I did not re-new it. And I couldn't tell any difference.
  I guess what I am trying to say, is do what works best for you. Every case has common denominators but yet is unique to it's owner. But, it can be expensive and frustrating to work through the maze and haze of all the products out there. That is why I say L-arg and E (and Pentox, even though I personally don't use it). Plus I have now added Vit D3 (learned from postings on this board), it's inexpensive and if you take reasonable doses, safe.
  Best of luck. And don't panic. It's a marathon race, not a sprint.  Oh, btw, you haven't mentioned traction or VED, are you using either? Considering them?

[George999]

I would have just a few comments related to the last few posts here.

1)  While there are a lot of supplements and medications that can be helpful for Peyronie's, there are only a few that are significantly helpful in my opinion.  And, as anyone here will know, I've been through a LOT of supplements.  The ONLY oral treatment approaches I currently regard as being significantly helpful are really Pentoxifylline and Vitamin D.  Both of these take a LONG time to work.  You will definitely NOT see overnight results.  What you will see is that you will almost certainly not get worse.  And over the long term, measured in years, you will likely see improvement.  While not very dramatic in their action, these two shine compared to other approaches.  Pentoxifylline is an extremely well understood and effective anti-fibrotic medication with a long term track record.  With Pentoxifylline, it is extremely important NOT to break the pills OR take them without food.  ALWAYS take Pentoxifylline with food.  They are usually prescribed as 400mg 3X/day.  That works out to one with each meal.  This tends to concentrate them into the day time ours, but that is likely a good thing since the bulk of their action is targeted anti-inflammatory in nature and inflammation tends to peak during the day time.  Doing this way will keep their side effects to a minimum while likely maximizing their effectiveness.  There are a few success stories out their with Pentox, mainly from people who got on it and stuck with it.  Try to find success stories on other approaches.  Lots of luck.  They aren't there, period.  Vitamin D is another story.  The main attraction of Vitamin D is not in stories of its success rate in treating Peyronie's.  The attraction of Vitamin D, rather is in the reams of research demonstrating its tight connection with all manner of disease and metabolic dysfunction due to deficiency issues.  Added to that is what we now are finding out about the prevalence of Vitamin D deficiency.  So, for me, Vitamin D is a real no brainer.  We know that deficiency is related to disease in general and we know that most of us are deficient.  The ONLY solution is to get our Vitamin D levels checked and get them fixed.  That will give the Pentoxifylline a solid metabolic platform on which to do its job.  Adequate Vitamin D normalizes/optimizes hormones and genes AND increases immunity while decreasing auto-immune sensitivity.  On the genetic level, Vitamin D takes FIVE YEARS to do its job IF you are deficient when you start taking it.  So Vitamin D is another long term project.  Both Vitamin D AND Pentox require guidance from a physician for safety and efficacy, so there is a need to take adequate documentation to the physicians to enlist their support.

2)  Once you have the above down, there are other things that can be helpful, of course, in individual cases.  Each of us are unique individuals and what helps one person might not help another.  So, in general, if it works, go for it.  Just know that some of the more exotic herbs and supplements might not include what the label claims and some might include some things the label omits which might equate to a severely bad experience.  Also know, that some things which might be helpful over the short term might not be helpful over the long term and, in fact, might even be detrimental over the long term.  Others are well understood and potentially very useful.  By this I am referring to things like Vitamin E and L-Arginine, Acetyl L Carnitine, Horny Goat Weed, etc.

3)  Regarding Dr. Herazy.  Somehow, one cannot get into a discussion about Peyronie's without Dr. Herazy's name coming up.  As far as Dr. Herazy is concerned, I bought some stuff from him ages ago that was helpful, and found him to give a lot of helpful and practical advice.  For those of you who might not be aware, Dr. Herazy is not a medical doctor.  He is a chiropractor.  I do not mean that as a criticism, but only to suggest that his professional medical knowledge and training is limited.  I do not think we should imply any lack of integrity on his part, BUT we DO need to realize that he is marketing these "treatments" and that his profit margins might color his judgments on them in some cases.  I have personally found his markups to be extremely reasonable.  But, nevertheless, he IS making money off of selling these various treatments, some of which I personally find extremely questionable.

4)  And somehow from Dr. Herazy, we jump to another ubiquitous topic in the Peyronie's community, Neprinol.  Neprinol is the quintessential  enzyme therapy.  It is manufactured in India and marketed in the US by Arthur Andrew company with a lot of PR and full out marketing hype behind its sails.  Personally, I think Neprinol is potentially very useful medically.  I find it one of those things I consider very interesting.  I think it needs to be studied extensively in a genuine research setting.  But, I have to say, for Peyonie's, I consider it useless.  So flame me if you must.  There are a few people around who claim to have been cured by it, but I have not yet seen one of those accounts that I would put my money on.  So I would strongly advise that you not spend your money on Neprinol which is VERY expensive.  I don't consider it terribly harmful in terms of Peyronie's at this point (other than to your pocket).  But its NOT effective.

5)  Then we come to Nattokinase.  Quite honestly I have nothing really against Natto.  Natto, like CoQ10, is used pharmaceutically in Japan.  It is really a very useful blood thinner.  While I once linked it to Neprinol in the famous quote Thin Man dug up below (it is a component of Neprinol), I doubt that it would be very harmful in terms of Peyronie's.  But it won't help your Peyronie's any, blood flow wise or other wise.  That said, I consider Neprinol an effective and inexpensive blood thinner that is extremely undervalued in western medicine.  But if its blood flow issues you want to address, Pentox is the way to go hands down.

6)  Bromelain.  Bromelain is a good anti-inflammatory.  But not good enough or targeted enough to be effective with Peyronies.  Here again, Pentox is the way to go.  Dr. Herazy can NOT offer you Pentox because Pentox is a prescription drug.  Remember that when you consider Dr. Herazy's advice.  - George

[Thin Man]

Many thanks George,

Can you tell me why it's not a good idea to break Pent ox in two?

The clinical nurse who prescribed me Pentox (assistant to Dr. Weasels, Seattle's local expert) told me it would be OK to break 'em. I haven't tried that yet, looking for a second opinion - the Pharmacy instructions say not to break, chew or crush.

Pentox gives me mild but quite noticeable vertigo and tires me out. Also, Pentox makes me feel strangely hot (not feverish), during exercise, and I'm getting the tingling in the legs other have complained about (I suppose that might be a good thing? - but it doesn't feel so good to me). The aforementioned nurse advised me to stop taking it, so I stopped for two weeks and and my body felt much better overall. Meanwhile my scarring has worsened so I'm giving Pentox a second try and hoping I'll adjust - I'm starting with just one a day.

Thin Man

[George999]

Thin Man,  I think the main reason for not breaking Pentox would be that it is pretty much agreed that 400mg three times per day IS the effective dose and by breaking them you are reducing the effectiveness of the drug perhaps significantly.  As for the side effects, I would be very cautious about going against the advice of the nurse.  I would think that before doing that you should be consulting with a doctor who is much more familiar with Pentox, since the effects you are noticing may be danger signs.  Pentox is a very good drug, but nearly all drugs can be dangerous to some who may be uniquely sensitive to them and you do NOT want to risk a dangerous drug reaction.  These would be my thoughts.  But I definitely would be dealing with the Vitamin D side and trying to get your doctor's help in sorting that out.  - George

[Hawk]

Thin Man,

Ask the pharmacist that told you not to break them.  My experience is that the warning not to break or crush usually is associated with a time release version of a pill that is made to have timed breakdown of different layers.  Cutting and exposing a cross section to stomach acids defeats the pill design.  I did not think this applied to any version pf Pentox (generic or otherwise) but it might.  Often time release have letters such as: (Sustained-release (SR), extended-release ( ER, XR, or XL), etc on the tablet and prescription.

[Fred22]

One of the issues that I don't see addressed here as often as I would suspect is the pain associated with Peyronies.  Penile pain was my first indication that something was wrong (about 2 and 1/2 years ago now.)  At first it felt sort of like a urinary tract infection...my GP's nurse practioner first put me on a 10 day course of Cipro, which of course did no good.  I then went through over a year of, at times, pretty intense pain. AsI've stated  before. I mentioned this pain to my regular urologist, who just kind of shrugged it off. I took ibuprofen for the pain, which sometimes helped unless the pain was very bad.  I finally made an appointment with another urologist this past September after developing a curvature and was diagnosed with Peyronies, which I had figured out myself by then.  When I mentioned the pain to him, he said I should only be experiencing pain with erections and that if I had pain while my penis was flaccid that perhaps I should be referred to a neurologist.  He prescribed vit. 200 IU (I'm taking 400), and made a followup appointment for March.  Meanwhile, I'm still experiencing almost daily pain, although not as intense as before and I've stopped the ibuprofen after reading lots of material regarding the dangerous side effects. I also have GI issues (frequent heartburn and constipation).  My new uro would not prescribe pentox (in as I've reported here before) he seemed to have never heard of pentox and definitely stated that it was not mentioned in any of the literature.  I'm bringing this up again because I'm still experiencing pain and was wondering how many others are dealing with this symptom.  I can still achieve a pretty firm erection, although the condition, especially the pain, has really limited my sex life. I know I've reported all this before, but I'd just like to know how common it is to have almost daily pain. How many reading this are experiencing pain of any degree on a fairly regular basis and what are you doing to deal with it.  I remember at one point George was mentioning Mangosteen juice, which I still haven't tried.  For those fortunate enough to be getting pentox, are you achieving a reduction in your pain?  I would appreciate any suggestions from those who have found successful treatment for this symptom, which is one of my biggest issues with this condition. Thanks.

Fred



Fred

[George999]

Thin Man,

Ask the pharmacist that told you not to break them.  My experience is that the warning not to break or crush usually is associated with a time release version of a pill that is made to have timed breakdown of different layers.  Cutting and exposing a cross section to stomach acids defeats the pill design.  I did not think this applied to any version pf Pentox (generic or otherwise) but it might.  Often time release have letters such as: (Sustained-release (SR), extended-release ( ER, XR, or XL), etc on the tablet and prescription.

Hawk,  I just checked my Pentox bottle prescribed by Dr Lue.  The label reads: "Pentox TAB 400mg ER".  I think this would indicate that these are formulated as extended release tablets and I shudder to imagine the consequences of taking these after breaking them open.  It could explain some of the weird reactions some guys are having.  Pharmacists almost ALWAYS know more about drugs than doctors and nurses are an especially untrustworthy source for this type of information.  ANY pill splitting should always be verified with the pharmacist.  And it is not just the time release issue involved.  There are medications with an extremely critical enteric coating to prevent interaction with stomach acids.  You break the pill and you inactivate the medication.  I could go on, but don't break pills without express consent of the pharmacist.  - George

[George999]

Fred, Pentox is the best thing for pain relief.  Take ALL three documents on Pentox and Peyronie's listed on this website to your doctor.  Tell your doctor that both Dr Lue and Dr Levine, both top Peyronie's experts recommend the use of Pentox, as documented in these papers.  - George

[Fred22]

Thanks, George.  I've downloaded the Lue, Brant, et. al. document.  Is there an "archives" area or someplace where I can locate the others? Thanks.

Fred

[George999]

Fred,  Look around again.  Hawk was going to stash them somewhere around here.  - George

[Hawk]

They are in the "Resource Library" board off of the forums home page

[LWillisjr]

Fred,
I read your post reqesting those who have a lot or daily pain. But just to point out the opposite is also true. I never had any pain associated with Peyronies, with a 70 degree bend. It would be interesting to so some type of poll covering the whole spectrum of those who experience no pain, to those experience severe pain.

[Thin Man]

Hi Fred,

I guess we need a few guys with severe pain to chime in on this one. I'm also lucky that my pain is pretty minimal, but then again I've got other issues I wouldn't wish on my enemies - story at eleven.

I was also taking Ibuprofen since I was concerned about inflammation. A Naturopathic Doctor recommended Bromelian as an alternative. It's a natural enzyme made from pineapples. I honestly don't know how much it would help with pain, but I was told I should take about 4 grams a day for inflammation.

Thin Man

[Thin Man]

Gentlemen, Thanks again for your very thorough advice.

I learned a few things about Pentox from a very helpful pharmacist. The ER stands for Extended Release, absolutely right. This is exactly the same for the name brand Trental version as for the generic - there is no other version of Pentox and there is no smaller dose available much to my chagrin.

I wasn't given a stern warning about trying half a pill, but the following has convinced me not to. In the research stage of Pentox a version was tried which was just a regular pill, not ER, and about ten percent of recipients experienced dizziness. With the ER version it was about one percent. Lucky me.

This sounds hauntingly familiar. In my pre op consultation with Dr. Goldstein I asked him what the risk was of getting scarring from a penile bypass procedure. He said about one percent. Lucky me.

Story at eleven,

Thin Man

[Fred22]

Thin Man,

I think a poll regarding pain is a good idea.  I'm not sure where it should be posted though.  Maybe Hawk can give us that information.  I'd like answers to questions such as: Pain with erections only;  Pain in flaccid state:  Degree of pain on a scale of 1 to 10:  How often does pain occur:  How long have you experienced pain:  What treatments have been beneficial:  Etc.  Personally, my pain started out in the spring of 2006 as a sort of mild irritation, like a UTI, worsened over the next few months until I was experiencing daily pain and taking 600 to 800 mg. of ibuprofen a day, then kind of leveled off in the spring of 2008 to the point that I was able to discontinue the ibuprofen (although I could still benefit from some days, but became worried   (side effects) which are numerous and can be severe).  Right after the pain subsided and I stopped the ibuprofen, one morning I woke up with a partial erection and noticed the curve.  My theory is that the ibuprofen, which is a good anti-inflammatory, was keeping the inflammation down somewhat and perhaps preventing the curvature. (Don't know...it's just a hunch).  Also, I have not had pain with erections but often after an erection I will experience pain.  Mine can come and go from moment to moment, sometimes it seems depending on my stress level.  I've read posts here which have reported increased pain with stress (another good poll question).  So let's find out where to start the poll thread and see what kind of data we can come up with.

Fred

[Hawk]

Fred,

A forum poll is a one question format that would not serve the purpose.  Your suggestion has merit but it would require a Webpage survey.  Good surveys are way trickier to design than most would imagine.  After they are designed they have to be converted to HTML and links have to be setup on our Website (not on our forum).  This is probably mere work than I can invest right now.  I currently have no web design /forum administration expertise assisting with our site so it all depends on my effort.

I will keep it in mind and toy with the idea as time permits.

Hawk

[Thin Man]

Thanks for your hard work Hawk,

I think surveys on this and other topics would be a great idea for the future, but another angle to consider before moving forward is  -- to be useful we would want to have as many respondents as possible. After looking though about two years of posts I that see many people come and go, understandably. I'm sure we all need a break sometimes - again my gratitude to you and the other admins/major contributors for persisting.

Is there a way to send email notices to everyone who's ever been on this list? I'm sure almost everyone would be glad to give their input if they knew it was needed, but it could be many would never be aware of a survey if they haven't logged in for awhile. Also this could be a good way to bring some lurkers out of the woodwork.

Anyway you've probably thought of this already, but I hope this helps.

Thin Man

[George999]

Personally, I think such a poll would be very interesting.  But I am still not clear as to what we would do with that information if we had it.  Supposing 23% of guys with Peyronie's had pain and 60% didn't and the rest couldn't remember.  What do you do with the numbers?  Ditto for degree of pain.  You would have an array of rankings from 1-10 or whatever.  What sort of useful thing would you do with those numbers that would justify the labor of creating the poll?  Perhaps there is something extremely useful about this, but I think we need to be clear on it before we move forward.  - George

[Thin Man]

George, on August 19 in your comments on Vita E you stated -

From what I have heard, taking 400IU along with Pentox is probably safe *for most people* and up to 800IU *may* be OK.

Of course you added -

But, again, I think your physician can best advise you on that and he can also do some objective testing that would tell him exactly how your body is responding to the Vitamin E in this regard.

Fair enough. I assume you mean the IU for Alpha Tocopherol. I just got two new brands of full spectrum Vita E. The only ingredient listed in IU is the Alpha Tocopherol, the rest are all given in mg and it state the IUs haven't been established.

How does one gauge how much to take? By the Alpha Tocopherol IU? - and then the rest is .... whatever it comes with? The breakdown of ingredients among brands are quite different, especially for the Alpha Tocopherol. For candidate #2 you'd have to take 3 of these to approach the same Alpha Tocopherol as candidate #1 and then you'd getting way more of everything else. Also it would cost 3 times as much - the price is reasonably close for both.  

Candidate #1 - Now Foods Tru-E Bio Complex

Tocopherols

Alpha 200 IU

And then it says "typical distribution".

Alpha 135 mg (is this additional? I guess not, unclear to me)
Beta 2 mg
Gamma 200 mg
Delta 104 mg

Tocotrienols - also "typical distribution"

Alpha 3 mg
Beta 1 mg
Gamma 6 mg
Delta 23 mg

This one also says it's the first NON-GMO Vita E



Candidate #2 - Jarrow Famil E

Tocopherols

Alpha 41 mg (60 IU - MUCH LOWER !!!)
Beta 3 mg
Gamma 250 mg
Delta 84 mg

Tocotrienols

Alpha 11 mg
Beta 1.5 mg
Gamma 22 mg
Delta 5 mg

This doesn't say anything about "typical distribution".

I was also contemplating ordering some of PDI's full spectrum E since I'm putting in a small order. For the Yazoo brand they carry it says "in their natural unesterified form as found in our food.". It doesn't state a breakdown, but the Alpha Tocopherol is 400 IU.  

Anyway is this kind of variance among products typical? - and does any of this really matter as long as we get some of each? I suppose the source could also be a factor. I see from prior posts you've been trying different variations on Vita E, so no need to rehash the entire history (taking Gamma exclusively etc), I've skimmed through it (for those who are interested I would suggest a search on the the word "tocopherol"), but have you (or anyone else) come to any conclusions by now? I'm hoping to stick with just one Vita E product for awhile and keep it simple, but if there's good reason to get fancier...?

In gratitude,

Thin Man

[Thin Man]

I should have thought of this sooner - here are the links to the two products. These are the only ones I could find in stores here in Seattle (surprisingly).

http://www.nowfoods.com/Products/ProductsbyCategory/Category/M072411.htm?cat=Vitamins

http://www.jarrow.com/product/292/familE

[LoveMyHusband]

I am looking to buy some L-arginine, Ginkgo Biloba , Horny Goat weed, I have a Gold card for GNC but often I also buy from Puritans Pride.    So many brands to choose from, I just want to know I am getting "quality" vitamins/herbs.    If anyone has tried a number of various Vitamin brands and can see a difference, please post, give advice.    

[Attica!]

   When I first starting buying my L-arg and Vit E, I went way across town to a very trendy, upscale natural foods and herb shop and bought the Solgar brand. Then after a few months I started going to the GNC, couldn't tell any difference. That being said, according to many respected voices on this board VasoFlow is the best L-arg out there. It is kinda pricey though.  

[slowandsteady]

I like the Jarrow because of the higher gamma/alpha ratio. I get it at iHerb.

slowandsteady

[slowandsteady]

FYI,

For those who are avoiding all supplements that could lead to increased collagen production (such as Lysine), I want to bring your attention to the fact that Whey protein powder (which many people use for muscle building) contains about 2grams of lysine per 25-30 grams of protein powder (about one scoop). This is quite a lot of lysine (I believe) and I think I will have to drop it from my supplements and look for a protein with an amino acid profile not so heavy on the Lysine.

I also noticed that, when I drink a whey protein shake, my active plaque regions get hard. I made one at 4 pm yesterday and they were hard until I went to bed, only this morning becoming softer. I would imagine that this is not good, but I'm not sure.

What could be the reason for this reaction? I don't know if it's the lysine, though I suppose that I could test it with supplemental lysine alone.

slowandsteady

[George999]

Both Puritan's Pride AND GNC products are dependable AND affordable.  SANN VasoFlow is the best Arginine product on the market due to the fact it contains powerful cofactors.  GNC *might* carry it or *might* be able to get it for you because they have been known to carry a few SANN products in the past.  It is expensive because it contains some other stuff besides Arginine that is more expensive, but I have found it worth the extra cost.  I have taken Ginkgo pretty extensively in the past and ended up pretty much considering it worthless in dealing with Peyronie's.  Horny Goat Weed along with Arginine are helpful.  Both GNC and Puritan's Pride carry Horny Goat Weed these days I believe.  Be careful when you buy Horny Goat Weed as to what it is combined with.  It is usually not sold in a pure form.  If you get it with Maca, a common cofactor, that is fine, but I would stay away from other ingredients such as Yohimbe which will not be helpful and can be dangerous and just add more problems.  Yohimbe, unfortunately often appears in Horny Goat Weed preparations.  The refined form used to be used as a prescription drug to treat ED but it can easily dangerously raise blood pressure and cause other problems so I would avoid it like the plague.  The Horny Goat Weed/Maca combination is safe, effective, and easy to find.  Both GNC and Puritan's Pride should have.  Straight Horny Goat weed would be best, but it can be difficult to source.  - George

Hawk,  This thread really belongs under oral treatments and should be merged with it.  - George

[George999]

In regards to the Vitamin E questions.  I know I have left somewhat of a confusing trail of Vitamin E posts on this thread, probably more than I can ever try to clean up in the rest of my lifetime.  I will try to clear up some of that confusion in this post.  I initially said that I found Natural Alpha Tocopherol more effective than Synthetic Alpha Tocopherol.  I stand by that statement to this day.  I then said I found the Broad Spec Vitamin E's which typically provide a ratio of 400IU Alpha Tocopherol + 300mg Gamma Tocopherol + Other Tocos to be even better.  I stand by that statement.  Later I said that I was moving away from Alpha Tocopherol completely toward the Other Tocos.  That, in the long run proved to be a mistake which is why I stopped advising it and moved back to advising the full spec form.  The problem is that Gamma Tocopherol, especially, is actually pro-inflammatory.  Somehow that seems to work out OK when taken in combination with sufficient Alpha Tocopherol, but I would caution at this point against taking it in isolation.  I doubt if it would be a significant factor with Peyronie's, but I consider the 400IU/300mg approach to be the more effective method with E.  So I am back to recommending the 400IU/300mg combo pills.  NOW Foods makes a good one and Yasoo's is the best out there, albeit probably the most expensive as well.  PDI is the best place to get it, they have the best pricing.  Iherb has good pricing on the NOW product.  The 400IU combo product is definitely safe for most people along with Pentox.  Jarrow is a great company with great products.  If the higher gamma Jarrow products works for you, that is fine.  But if you have any indication of increased inflammation, Peyronie's or otherwise, I would quit it and go back to the 400IU/300mg type products.

In regards to the whole collagen issue.  Peyronie's is driven by auto-immune/inflammatory/metabolic dysfunction issues, not things like levels of collagen production.  If that were not the case, one could just starve themselves of foods that generate collagen and cure Peyronie's.  But no matter how much you try to lower collagen production, the body will just steal it from someplace else to create Peyronie's plaques because that is what it is programmed to do.  It doesn't matter how much you raise or lower collagen production, it is not going to affect the course of your Peyronie's significantly.  That said, I think that whey shakes are quite harmless and usually very healthy.  I don't drink them personally, but do use whey in my diet.  Ditto for Lysine.  I don't recommend that Peyronie's sufferers use Lysine, but I don't consider it particularly harmful either.  So if you happen to have cold sores, Lysine is a good treatment and is not likely to make your Peyronie's significantly worse.

The number one most powerful vectors oral treatment wise for Peyronie's remain Pentox and Vitamin D in my book.  I highly recommend both.  I also highly recommend the advice and vast trove of information available on these websites:  Dash Diet, Real Age, and Jorge Cruise.  The Dash Diet site is run by a highly acclaimed nutritionist and features a top notch resource book entitled "The Dash Diet Action Plan".  The Real Age site is run by a team of acclaimed doctors and features a wide array of interactive resources plus a several publications in the "YOU" series that really help you understand how your body works on the inside.  The Jorge Cruise site is run by an acclaimed fitness guru and trainer and features a free download diet guide along with lots of other useful resources.  Diet and exercise can pack a powerful punch when it comes to getting the upper hand with Peyronie's and related issues.  - George

[slowandsteady]

It doesn't matter how much you raise or lower collagen production, it is not going to affect the course of your Peyronie's significantly.  That said, I think that whey shakes are quite harmless and usually very healthy.  I don't drink them personally, but do use whey in my diet.  Ditto for Lysine.  I don't recommend that Peyronie's sufferers use Lysine, but I don't consider it particularly harmful either.  So if you happen to have cold sores, Lysine is a good treatment and is not likely to make your Peyronie's significantly worse.

I still find it very curious that whey causes the immediate and obvious reaction I described. Lysine is an essential amino acid, so it's needed for life and can't be cut out entirely. Lowering intake might not be a bad idea though. From this site:

Lysine is involved in the browning reaction, or carmelization, in foods such as pastries, doughnuts, cookies and cereals. Lysine is dependent upon riboflavin, niacin, and vitamin B6 for its assimilation. Using iron and vitamin C, lysine helps form collagen.

The browning reaction is of course undesirable, and glycation is involved with Peyronie's.

slowandsteady

[George999]

Note that the same site says that Lysine is "safe and non-toxic".  And it says nothing at all about the Maillard or browning reaction within the body which is a whole different process than what occurs during cooking.  Here again, it is not the ingredients in the reaction we should be concerned about, but the failure of the body's controls.  Normally the body has systems in place to prevent glycation and the inappropriate accumulation of collagen.  Those are the areas we need to be addressing.  As for the reaction you are experiencing with the whey, do you really think this represents collagen accumulation?  Detectable collagen accumulation takes place over a period of months, not hours or days.  So I don't know what is happening with your plaques, but I doubt if it represents sudden collagen accumulation.  But, granted, it could represent a momentary mild pro-inflammatory response, and so that would mean it should probably be avoided.  But I wouldn't be hugely concerned about it if it were not causing a significant effect.  - George

[hornman]

Sorry to be gross but I suspect vit. E is causing me an unpleasant side effect. I'm experiencing anal leakage. I did bring this to my doctors attention but he said things looked ok and he could not find anything wrong. Of course the symptoms go away when I need a professional opinion! I've laid off the E,L-carnithine and Arginine and leakage is reduced. I was using 400 iu gamma E,  2000 acetyl carnithine and 1000 arginine.  I am continuing with D, K, and low dose cialis.

Has anyone else experienced this side effect?

[George999]

For years I struggled with anal leakage.  The one thing that virtually cured it for me was getting rid of refined carbs and sugars from my diet.  - George

[Thin Man]

Thanks again George!

Ok since nobody else has asked I will. Earlier today George said -

Straight Horny Goat weed would be best, but it can be difficult to source.

Has anyone found some?

I don't like putting anything in me I don't need. Agreed, I'd rather avoid Yohimbe, (and Ginseng which I'm sensitive too - similar to caffeine for me). I've tried Maca and I'm not crazy about that either, although it wasn't awful for my system.

Thin Man

[Hawk]

Horny Goat Weed with maca as the only other ingredient. http://www.puritan.com/herb-products-f-to-m-035/horny-goat-weed-with-maca-capsules-epimedium-007321

I will be shocked if you beat this price and Puritan Pride has a good reputation for purity and potency.  They are my preferred supplier of supplements although I go elsewhere for things they do not handle.

[George999]

Pure, unadulterated HGW.  There are several brands around which I would NOT recommend.  The one that I know of that I can recommend is Natures Way, I have found their products to be dependable and of high quality.  - George

[Hawk]

I also noticed that, when I drink a whey protein shake, my active plaque regions get hard. I made one at 4 pm yesterday and they were hard until I went to bed, only this morning becoming softer.

S&S,

I am with George in my non-professional opinion.  First, I will never buy that collagen synthesis is occurring in days much less minutes or hours. I am sure something else is going on with your observations.  Next, I do not believe a person can even hope to fight collagen production systemically since it is the essence of all we are (ligament, tendon, skin, scar, bone etc).  To reduce collagen production body-wide to prevent deposits in a small spot on a relatively tiny organ is impossible. It would be akin to trying to eliminate water from our body because our eyes water, or injecting Xiaflex systemically to breakdown collagen.  If we have enough collagen to maintain life and health, the body will have way more than enough to direct the wrong type to the penis unless we disrupt the process through some other channel.

There are well over a dozen types of collagen. Without collagen we would have no penis.  The question is why does our body deposit that type of collagen when it is not needed to repair a wound. and how do we stop that specific response or thwart that process.

[slowandsteady]

First, I will never buy that collagen synthesis is occurring in days much less minutes or hours. I am sure something else is going on with your observations.

I don't think so either. I think that it is some type of inflammatory response. For a while I was taking resveratrol mixed with whey and thought that the response was due to the resveratrol, but I now see that the whey alone will do it.

My question is whether the inflammatory response can be a kind of first step. For example, the left side of my penis used to have an inflammatory lump, but it resolved to an area of constriction.

slowandsteady

[Thin Man]

George and Hawk, thanks so much for the HGW recommendations.

George, thanks for helping us all benefit from your experience with Vita E. Just to be clear, yesterday you stated -

The problem is that Gamma Tocopherol, especially, is actually pro-inflammatory.  Somehow that seems to work out OK when taken in combination with sufficient Alpha Tocopherol, but I would caution at this point against taking it in isolation.  I doubt if it would be a significant factor with Peyronie's, but I consider the 400IU/300mg approach to be the more effective method with E.

And....

If the higher gamma Jarrow products works for you, that is fine.  But if you have any indication of increased inflammation, Peyronie's or otherwise, I would quit it and go back to the 400IU/300mg type products.

I have no idea what will work for me. I'd rather play it safe, but what I found at the store is a wee bit different than the products you describe. Until I can find something better I guess I'll go with Now Foods Tru-E - 200IU (which is 135mg... I think) Alpha/ 200mg Gamma. If I take two a day that makes it 400IU (270mg) Alpha /400mg Gamma. Is this too much Gamma?  

The Alpha in IU is deceptive - Correct me if I'm wrong but yours is actually 400IU (270mg... I think) Alpha/300mg Gamma - still slightly more Gamma but this is what you're after, right?

Also, do you think there's any advantage in taking two smaller does per day (a possibility with this product) rather than one large one?

But if this is too much Gamma, or too high a proportion of Gamma to Alpha, forget it.

Thin Man

[George999]

I have not been using any Vitamin E at all now for a month or two.  Right now, I am planning to start using Vitamin E again.  It will be NOW Foods Advanced Gamma E Complex.  This one has the 400IU/300mg ratio and has worked well for me in the past.  I think that as I recall, the NOW Foods Tru-E product is a good choice as well.  I have not used it because it is significantly pricier than the other product.  I wouldn't worry at this point about the little extra Gamma content.  Its not life or death.  The major reason for the use of "IU" or International Units rather than mg in the designations is to accommodate synthetic forms.  Synthetic forms of vitamins, among other things, differ in their measured effectiveness from natural forms.  Therefore 1IU of synthetic E does not equal 1IU of natural E in terms of mg.  Its an attempt at an approximate comparison.  However there are other factors involved here that make synthetic forms a poor choice when it comes to vitamins.  So I NEVER recommend synthetic vitamins.  As for divided doses, if I were using 200IU pills, I would probably divide them, rather than taking both pills at the same time.  - George

[George999]

Regarding Whey, if it seems to be inflaming your plaques at this point, I wouldn't use it, period.  Forget trying to figure out all of the collagen stuff, just don't use it if it causes apparent inflammatory response.  That goes for anything else as well.  And I can tell you that I have quit things in the past that caused inflammatory response and now I am using them again because now they no longer are having that effect.  But the most important things you can do regarding inflammatory response is to be taking Pentox and Vitamin D.  These both strike at the very root of the problem.  And of course things like VED are also useful, I believe, in controlling inflammation, but discussion of those modalities belongs in another thread.  But Pentox, Vitamin D, and getting rid of as much inflammatory omental fat as possible through diet and exercise is extremely important if you ever want to get the upper hand on Peyronie's.  So it IS important to cover all the bases, but it is also important to avoid straining at gnats.  - George

[Tim468]

Possible sources of HGW:

http://www.iherb.com/ProductDetails.aspx?pid=1561&at=0

This has a larger than average dose at 1200 mg and a fair price (about $15 for 60 1200 mg capsules)

A standard value in a store like Whole foods would be closer to $20 for 60 capsules at 500 mg (per two caps). This seems worth a try. I am not sure, though, if this is a brand that George would advise against - I have no experience with this particular brand, but find iHerb a good source of quality vitamins and supplements in general.

*******************

http://www.puritan.com/herb-products-f-to-m-035/horny-goat-weed-with-maca-capsules-epimedium-007321?searchterm=horny%20goat%20weed&rdcnt=1

This is a more stadard "good deal" for this product. It has 500 mg per two capsules, and 60 capsules and it is mixed with Maca. As usual, Puritan's Pride gives you two for one on this product, making it effectively 7.50 per bottle. The dose is lower than the first one though. I used this with good success myself for a long time.

Tim

[jayhawk]

Tim,
Would it be safe to use Pentox, vitamin d-3, vitamin e and L-Arginine as a treatment or if I am using Pentox should I skip the L-Arginine.
Thanks,
Jayhawk

[Tim468]

Safe to use all of them. I stopped my l-arginine when I ran out, but continue on E, D and Cialis. I have not started Pentox yet.

Tim

[slowandsteady]

But Pentox, Vitamin D, and getting rid of as much inflammatory omental fat as possible through diet and exercise is extremely important if you ever want to get the upper hand on Peyronie's.  So it IS important to cover all the bases, but it is also important to avoid straining at gnats.  - George

In addition to those, pycnogenol also looks interesting to me. In patients with osteoarthritis, it provided both "decrease of systemic inflammatory markers" and fibrinogen levels (PMID 19017467):

Plasma CRP levels decreased from baseline 3.9 mg/l to 1.1 mg/l in the Pycnogenol group whereas the control group had initial values of 3.9 mg/l which decreased to 3.6 mg/l. The CRP decrease in the Pycnogenol was statistical significant as compared to the control group (P < 0.05). Fibrinogen levels were found to be lowered to 62.8% of initial values (P < 0.05) in response to Pycnogenol.

Fibrinogen is a component of fibrin and involved with Peyronie's^R. Sounds like a 2-fer.

slowandsteady

[George999]

Tim,  I would NOT recommend the Planetary Herbals brand because I simply do not trust their purity.  A leading independent testing lab found significant quantities of lead in a similar product some time back and I would avoid this formulation.  - George