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

[meanmrmustard]

thanks for your advice George. I'm seeing a general practitioner tomorrow.

don't understand why zinc is so bad though - I actually bought a zinc supplement yesterday because I read that zinc defiency is often associated with ED as well as with fatigue.

not sure whether and how the fact that my ED is the result of an accident, in which my penis was bent sharply in my pants, fits in. it started off as the penis not getting as hard as before and the almost immediate loss of nighttime erections and got worse and worse over the years. could be that the accident triggered it and an underlying immune problem prevented the healing of a lesion. the fact that there was no blood or swelling involved in the 'accident' always startled physicians and lead them to claim that it didn't sound like a penis trauma.

hopefully I'll soon know more.

[George999]

MMM - I STRONGLY suspect that in your case the link between your 'penis incident' and the symptoms you are experiencing is purely coincidental.  A lot of times we can have diverse physical issues that seem to converge at the same time and we tend to want to make sense of that.  Part of the job of the doctor is to sort out the facts from the coincidences which can be a quite a project.  But you need to start with what you KNOW is wrong and see what falls together AFTER that issue is resolved.  At this point you apparently KNOW there is a problem with your white cell count.  You need to hit on that and hit on it hard until it is diagnosed and treated.  THEN see what happens with the other issues.  Don't automatically conclude just because certain things occurred at around the same time that there has to be a cause and effect relationship.  Doing so is one of the major pitfalls of attempts at self diagnoses.  I KNOW from PERSONAL experience, I have made this mistake many times.  - George

[George999]

MMM - THE RIGHT AMOUNT OF ZINC (and also copper) reinforces the immune system.  But getting too much Zinc can actually be bad for the immune system.  If you have not been taking supplemental Zinc, your problem is not being caused by Zinc.  I just brought it up because too much Zinc CAN cause immune problems.  I personally was getting oral thrush which is indicative of depressed immunity and lowering the amount of Zinc I was taking solved the problem.  In your case Zinc might even be helpful since you might be deficient in Zinc which can also cause this type of problem.  Just don't take excessive amounts of it.  But you really need your doctor to try to find out what is going on because it is just not a good thing to be walking around with white cell issues.  They can be an indication of an underlying problem that needs to be identified and dealt with before it becomes too serious.  - George

[Daniel]

As per Doctor's recommendation ( https://www.peyroniesforum.net/index.php/topic,35.msg10250.html#msg10250 ) I will be looking to buy some 400UI Vitamin E.  Having already read a majority of the posts here on Vitamin E, I have a few remaining questions before I go decide which Vitamin E to get.

1) When you guys use terms like "full spectrum" or "broad spectrum," you mean a Vitamin E mix that has all 8 types of Vitamin E (the 4 tocopherols and 4 tocotrienols), correct?
2) I've also seen the words "high gamma" and "full gamma" used in the forum.  What does that mean and how is it different from gamma?
3) What is the ideal ratio of tocopherols to tocotrienols?
4) I've seen George999's post ( https://www.peyroniesforum.net/index.php/topic,22.msg7415.html#msg7415 ) recommending a variety of good Vitamin E options.  I wanted to ask more specifically, what are the very very best Vitamin E options out there.  Or if there is one particular brand/formulation that is easily the best choice.

Thank you for any info!

best,
Daniel

[meanmrmustard]

But you really need your doctor to try to find out what is going on because it is just not a good thing to be walking around with white cell issues.  They can be an indication of an underlying problem that needs to be identified and dealt with before it becomes too serious.  - George

thanks again. will have another blood test this monday, doc said if the results are more or less the same she'll send me to an internist

[Tim468]

BTW, 9 times out of 10, white blood cell issues go away on retesting. There is often a fluctuation in WBC counts.

Tim

[PainIsGrowth]

Hey Daniel,
  Thats pretty awesome news from the Doctor.  I'd agree it seems strange that you are spontaneously healing after 5 years, but who cares if its strange, its a good thing!  From the research I have done, MegaFood Full Spectrum Vitamin E containing the 8 types of Vitamin E (the 4 tocopherols and 4 tocotrienols), seems to be one of the best out there.  
Here is a link so you can see the exact amounts of each tocopherol and tocotrienol.
A lot of full spectrum vitamin E's out there don't tell you how much of each you are getting besides the d-alpha.  The other thing is this product is expensive.  Its around $60.00 a bottle, so if you don't mind the spending a lot of money, its probably worth it.  You should be able to find it at any health food/vitamin store.  
http://www.megafood.com/products/nutritionaltherapeutix/vitamin_e_complete_8_400_facts.php

[George999]

Daniel,  The term "High Gamma" is really just a marketing term.  All of the major vendors of "Full Spectrum" E products tend to follow the same ingredient spectrum.  The major component is the traditional Alpha Tocopherol, followed by a similar amount of Gamma Tocopherol, with trace amounts of the other six components.  This is generally for two reasons:  1) I follows the formula by which these nutrients typically occur in a natural setting, and 2) The major two ingredients are the ones known to be the active components.  Alpha Tocopherol is a major anti-oxidant protecting against Oxygen Species Radicals and Gamma Tocopherol is a major anti-oxidant protecting against Nitrogen Species Radicals.  So these two play well together and form a more complete anti-oxidant shield.  There are a number of brands many with slightly different approaches in terms of formulation.  I am not sure it is that easy to quantify which might be better than another.  The pricing runs all the way from bargain basement to fifth avenue.  So choose your poison.  It is usually worth it to pay for a quality product, but then once you get out to the very high end, you are usually wasting your money, in spite of the marketing hype.  I am generally reluctant to pay premium prices UNLESS there are reputable peer reviewed studies backing up the claims.  Myself, being somewhat of a cheapskate, I use the NOW brand High Gamma E.  Both NOW Foods and Puritan's Pride generally produce high quality and affordable at the same time products.  But there are other good vendors out there.

[myrddin]

Tim,

I started by noticing how PPC and SAMe were mentioned here as a potential treatment for Peyronie's.  Then I found here that DLPC was "the main phosphatidylcholine species of PPC."  This led to more studies showing positive results (here and here).  But these studies were only about treatment of liver cirrhosis, which the American Heritage Science Dictionary defines as "A chronic disease of the liver characterized by the replacement of normal tissue with scar tissue and the loss of functional liver cells."

To me, that sounds a lot like a liver with Peyronie's.  So I first experimented for a month with Source Naturals PPC and NOW SAMe.  My condition did improve about that same time, but who can really say why?  It could just be the Pentox.  Currently I'm using PolyPC with no SAMe (too darned expensive) and will probably try a couple more variations of this recipe until I'm convinced it does no good.

[Daniel]

PainIsGrowth,
Thank you for the recommendation.  That MegaFood Vitamin E certainly looks very good, highest mixture of tocopherols and tocotrienols I've seen.  But it certainly is quite expensive.  I'll have to pass on it.

George,
That's some really exceptional info.  Thank you for your great answers as usual!

I've decided I'll get GNC's Isomer E ( http://www.gnc.com/product/index.jsp?productId=2133477&cp&sr=1&origkw=isomer+e&kw=isomer+e&parentPage=search ) from their website.  With the GNC name recognition and George's mention in another post of his about Isomer E, I think it'll be a good choice.  While I was googling it, I came across this post on a forum ( http://supplementcentral.com/forums/printthread.php?t=3423&page=1&pp=20 ): "...IsoMer E GNC brand is cheaper than Pinnacles. Pinnacle and GNC together deveolped IsoMer E and are currently the only companies that sell IsoMer E (a truly superior version of Vitamin E)."  Course it's just one user's post--could be fact or opinion.  Would anyone happen to know anymore about GNC Isomer vs. Pinnacle Isomer?  Thank you again!

[George999]

Tim,

I started by noticing how PPC and SAMe were mentioned here as a potential treatment for Peyronie's.  Then I found here that DLPC was "the main phosphatidylcholine species of PPC."  This led to more studies showing positive results (here and here).  But these studies were only about treatment of liver cirrhosis, which the American Heritage Science Dictionary defines as "A chronic disease of the liver characterized by the replacement of normal tissue with scar tissue and the loss of functional liver cells."

To me, that sounds a lot like a liver with Peyronie's.  So I first experimented for a month with Source Naturals PPC and NOW SAMe.  My condition did improve about that same time, but who can really say why?  It could just be the Pentox.  Currently I'm using PolyPC with no SAMe (too darned expensive) and will probably try a couple more variations of this recipe until I'm convinced it does no good.

myrddin, Thanks for the additional info.  In my book anything that has been demonstrated to be effective against ANY kind of fibrosis is of interest and has potential for Peyronies.  The improvement you are seeing could be from the Pentox, or it could be from the supplements, or more likely, it could be from some combination of the above.  Pentox is KNOWN to be effective against Peyronies.  The larger question is what supplements can be added to be mix to enhance its benefits?  I am convinced that Full Spectrum E is one.  But you are certainly making a good case for PPC and SAMe with the connection to Cirrhosis.  NOW has to be one of the most reasonably priced vendors of SAMe.  - George

PS - Great Links!!!

[Tim468]

Get a capsule and not a dry vitamin E. And think about taking it with some fat, to enhance absorbtion.

Tim

[Liam]

And think about taking it with some fat

Bluebell Praline Ice Cream

I knew it was good for me

[nectar]

I FELT ONE PLAQUE BEFORE 12 MONTHS FROM NOW. FIRST I TOOK 12GRM POTABA POWDER A DAY FOR 35 DAYS. AFTER I CHANGE MY URO., HE CANCEL THE POTABA AND PRESCRIBED ME TRENTAL ,COLCHICUM, E VIT, CIALIS. I WAS ON THIS FOR 7 MONTHS. DURING THIS TIME WHEN I GO TO MY DOCTOR FOR CHECK HE DID INJECT FOR SEE THE DAMAGE BUT AFTER INJECTION I FELT ANOTHER PLAQUE. SO NOW I HAVE TWO PLAQUES
, NO CURVATURE BUT TO COME DOWN AROUND THE RING OF PLAQUES.

LAST MY URO. TOLD ME THAT FROM NOW IT IS VERY DIFFICULT TO RESOLVE THEPLAQUES AND YOU ACCEPT THIS SITITATION. I ASK FOR MANY OPTIONS TO DO BUT TOLD ME THAT NOTHING HAVE TO DO JUST TAKE E VITAMIN.

NOW I HAVE ALREADY POTABA THAT I BOUGHT BEFORE , CAN I TAKE IT??IF YES THE DOSAGE MUST BE 12GRM A DAY?? CAN I ADD TRENTAL OR L-ARGININE ON IT ??

MASSAGE TO THE PLAQUES DIRECTLY BY FINGERS IS GOOD

TO SEAT IN A HOT WATER IS GOOD

ANYTHING CAN BE HELP TO ME BECAUSE PASSED ONE YEAR

THANK YOU FROM NOW BYE BYE

[myrddin]

But you are certainly making a good case for PPC and SAMe with the connection to Cirrhosis.

George,

A noteworthy read on the similarities between Peyronies and Cirrhosis can be found here.  It details many treatments for cirrhosis (including more info on PPC and SAMe) and makes this interesting statement:

In addition to antioxidants (such as PPC, silymarin, alpha-tocopherol and selenium), anti-inflammatory medications (corticosteroids, colchicine, anticytokines) are also being tested as antifibrotics.

Anyone who's been on this forum for a while can easily recognize that most of those treatments have been recommended or tried as Peyronie's treatments.  Also noteworthy in the article was this bold claim regarding PPC:

... its dilinoleoyl species (DLPC) increases collagenase activity

I'm not sure how they came to that conclusion but it sounds like a good thing.

So I guess my point is just that there seems to be enough similarities with Peyronie's to warrant paying attention to any research currently being done on treating alcoholic liver disease/cirrhosis.

[George999]

Nectar,

1 )   Please don't use all caps, its not considered polite to do that.

2 )   The medications you have been prescribed make sense.  The Potaba did not seem to be working, so your Uro moved you to Trental (Pentox is the generic form of Trental) plus some others.

3 )   DO NOT combine the Potaba with the Trental combination without your doctors express consent.

4 )   Trental is absolutely the best drug for Peyronies, but seven months is not nearly enough time for it to work.  It is NOT too late to resolve the plaques, you need more time on the Pentox.

5 )   You should continue with the Trental/Colchicum (Colchicine)/Vitamin E/Cialis under your Uro's supervision.  Do NOT take Potaba UNLESS your doc says its OK.

6 )   The best form of Vitamin E is the full spectrum kind that contains all eight sub-forms.  The Vitamin E should at least contain both Alpha-Tocopherol AND Gamma-Tocopherol.

7 )   L-Arginine would be a good addition to this regimen, but check with your Uro first.  SAN VasoFlow is the absolute best L-Arginine formula on the market.

8 )   Gently massaging the plaques will not hurt and may help.  Very warm water (especially with epsom salts) may help.  I would NOT use uncomfortably hot water.

9 )   It would be helpful to know were you are located and who your doctor is.  The fact that your doctor knows about the Trental indicates that he is familiar with Peyronies, but to cut it off at seven months seems a bit soon.  In most of the world, generic Pentox is available at a lower price than Trental and it should work just as well.  From what I have heard, two or three years on the Trental/Pentox would be more realistic.

Sincerely,

George

[wasa]

George999, which Vit. E do you recommend from Puritan if I may ask, since you seem to have good knowledge about it

quote removed (repeated an entire post)

Hawk

[George999]

wasa, My recommendation of Puritan was as a vendor in general, not necessarily as a vendor of Vitamin E.  At this point they do not appear to have a Vitamin E product which meets my expectations of at least 400IU of Alpha Tocopherol + 300mg of Gamma Tocopherol.  Other vendors like GNC, VitaminShoppe, and iherb do carry such products.  - George

[Hawk]

They do have this product that has 400 IU or 1000 IU of vitamin E as Alpha Tocopherol plus d-Beta, d-Gamma, d-Delta Tocopherols) but it does not breakdown the amounts of these individual Tocopherols.

http://www.puritan.com/pages/file.asp?xs=5461C2B000304511BD43F5014C78E1A5&CID=103&CPID=88&PID=852

[nectar]

DEAR GEORGE,

I AM FROM TURKEY , AND HEARD ABOUT DETAILS OF Vitamin E is the full spectrum kind that contains all eight sub-forms  AND  TRY BEFORE  BUT CAN NOT FIND IN MY COUNTRY(SOLGAR 400 NO OTHER FORM). BUT AFTER I HEARD FROM YOU THAT THIS POINT FOR E VIT. IS IMPORTANT SO I WILL CHECK AGAIN MAYBE BUY FROM ANOTHER COUNTRY.

ALSO I WILL START TO TAKE TRENTAL 3X400  A DAY. ANYWAY TRENTAL WITH VIT E IS ENOGHE OR  I MUST ADD COLCHICUM ALSO? IN WHAT DOSAGE  

FOR CIALIS , I WAS TAKING 2 TABLET IN A WEEK , AFTER  DAY I TOOK  HAD A STRONG HEADACHE SO CAN NOT GO ON MORE THAN 3 MONTHS. SO NOW WHAT AM I DOING FOR CIALIS , IS IT IMPORTANT FOR ADD IT  

I WANT TO KNOW THAT ANTIBIOTICS CAN HELP FOR PEYRONIE  

THANK YOU FOR YOUR REPLY AND BYE WITH MY BEST REGARDS  ,

[Liam]

Try taking 25 mg Viagra a night instead of Cialis.  I get very very very bad headaches, too.  This should help stop the headaches.  

Please MAKE YOUR LETters small, my friend.  It will help us read your posts.

Thanks,
Liam

[George999]

Nectar, of all of the medications you have mentioned, the one that is really KNOWN to be effective against Peyronies is the Trental also known as Pentoxifylline.  That is the most important drug for you to be taking.

The best place for you to look for the Vitamin E would be locally in Turkey.  GNC's Isomer E http://www.gnc.com/product/index.jsp?productId=2133477&cp=2626023.2108437&parentPage=family is a good product and if your GNC stores in Turkey don't carry it they may be able to special order it for you.  GNC has a number of stores in Turkey: http://www.gnc.com/corp/index.jsp?page=storeLocator&countryName=Turkey&country=TR

The second option would be to order internationally from iherb.com http://www.iherb.com/info/shipping/ShipOtherCount.aspx in Los Angeles CA USA.  NOW FOOD's Gamma E http://www.iherb.com/ProductDetails.aspx?c=1&pid=299&at=0 is also a good product and is available from iherb.com.

Wishing you the best,

George

[allj]

Hi
I was reading about pycnogenol and came across this " Some evidence suggests that OPCs protect and strengthen collagen and elastin. Theoretically, this could mean that OPCs are helpful for aging skin , and they are widely sold for this purpose, but there is as yet no direct evidence that they work". Do you think this means I should take or stay away from this?? Alan

[George999]

Pycnogenol and OPCs are very good for you.  They are expensive.  I have been taking them for some time now with no evidence whatsoever that they have made my Pyronies either better or worse.  Theoretically they should be helpful.  - George

[allj]

Thanks George. I was just concerned that they may increase collagen.  I thought this is part of the problem with peyronie's. Also confused esp that it may increase elastin- something I thought helpful. Alan

[nectar]

George , I bought the vitamin e " 200 iu as d-alpha tocopherol  plus d-beta  tocopherol , d-delta tocopherol and d-gamma tocopherol " which came to my country from solgar just a week ago.

I am still on vitamin e " 268 mg. ( 400 iu ) as d-alpha tocopherol plus mixed tocopherols " form solgar 2x a day.

Now I want to know that , I must take them together   and in what dosage I must take  

Anyway I orderred isomer e vitamin from gnc/usa by one of my friend who live there , also in what dosage I have to take isomer e after stop the solgar e vtamins    

thank you from now bye.

[George999]

Nectar, When you ask about dosage, these are really questions that should be asked of a doctor.  I am currently taking 800IU of Alpha Tocopherol plus the other Tocos included in the complex, BUT I am NOT taking Trental along with it.  That can make a difference because both Trental and Vitamin E have an effect on blood clotting and if you get it wrong you can have a bleeding problem which can be dangerous.  ONLY your doctor can advise you on what are safe levels for you based on what else you might be taking.  You really need to talk to your doctor about this question.  - George

Alan, The problem with Collagen is not really with the amount of Collagen produced, but with how the body is processing Collagen at the local level.  You have HEALTHY Collagen processes going on all over your body.  You shouldn't be focusing on the localized problem to the degree that you risk starving out those healthy processes.  It is the localized dysfunction that needs to be addressed, not the raw materials that happen to be involved in the process.  - George

[dahc]

I haven't seen many postings on problems with Pentox, but I am having a tough time with tolerating it. The main problem is the tremendous acid reflux it causes me, so much so that I'm gagging & coughing all day while taking it. I'm susceptible to Bronchitis. I stopped taking L-Arginine, Acetyl-L-Carnitine & Pentox together for a couple of weeks and experimented taking each separately. Pentox sets it off after a couple of doses.

My general practitioner gave me Protonix for the reflux which helps, but not enough to stay on the Pentox. I've scheduled an appointment with a GI Doctor. I feel like I may be missing a window of opportunity as I am going through the Verapamil injections. I'll be finished with them in October.

I don't want to discourage anyone from trying Pentox, everyone's body reacts differently. I'm just curious if anyone's had a similar experience and if they were able to work through it.

[George999]

Chad, Sorry to hear you are having the acid reflux problem.  I sincerely hope that the Protonix is helpful to you.  It is good that you are getting your GI tract checked out.  The one thing I can tell you is that weight loss is often one of the most effective strategies in preventing acid reflux or GERD.  However, if you are skinny as a rail, there may be something else going on that would make you susceptible to this problem and you definitely should have it investigated.  But I suspect that things like acid reflux are common problems that people have with a wide scope of medication.  Another thing that I have found helpful with medication induced stomach upset in general is aloe vera gel.  Since the lower GI tract can also cause this problem, probiotic bacteria such as that found in yogurt might also prove helpful.  In any case, I wish you the best!  - George

[mark501]

What oral drugs/OTC supplements increase blood flow/circulation without thinning the blood? I believe L-Arginine would be one. Thanks for your help.

[aphro]

What new topics do you want added? Please post new topic requests here.

First, I am a newbie here. I am a bit confused by the organization of the board - seems like everything is being crowded into a handful of threads, which get extremely long and hard to follow as they flow backwards (ah, well!). I also do not have the board permissions to start a new thread. So I will add my comments here.

I had a recent painful experience and thought it might be peyronies disease. After getting one diagnosis from my MD and another from a urologist, it now seems it is some kind of muscular/vascular issue, and not peyronies. But I had a few sleepless nights and did some research, will toss these ideas out.

1) Vitamin E should be tried topically. Verapamil is used topically for this disease, as this method results in higher levels at the affected site with a lower total body exposure, fewer side effects.  I once was exposed to a lot of sun and knew I was going to burn. I took a vitamin E capsule orally, and then punctured a few capsules and rubbed the (very sticky) oil on one side of my body. The shoulders, back, neck and ear on the side that got vitamin E were fine the next morning. The other side was bright red and painful. The oral dose of E might have helped some, but the topical dose was dramatic.

2) In a paper on the genes that are over-expressed in peyronies, endothelin/angiotensin were mentioned as a possible area where intervention might help.  I know from my high blood pressure days that the red/blue/purple pigments in Hibiscus tea are fairly good angiotensin inhibitors. A tea made with 10 grams of the flowers in 500 ml water has been shown to normalize blood pressure when an up-regulated angiotensin system is the cause.  Other angiotensin inhibitors can be found in some hydrolyzed fish and dairy products (dipeptides and tripeptides). And of course, there are prescription ACE inhibitors. Any one try those?

3) TGF - Was just researching Cordyceps and found a study that shows that a cordyceps/astragalus combination lowers TGF production under some circumstances. http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17565873&ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum PubMed Citation

4) For the DIY crowd, I have been cross indexing the scientific research for a thousand or so herbs against a few thousand diseases, conditions, and metabolic pathways. I just ran peyronies as one of the diseases, unfortunately, no hits there. But if you are interested in collagen synthesis and some of the other genes known to be up regulated, it may be of interest. The site is www.shrubmed.com - still in flux, far from finished, but might have some useful information.  

5) There are more than a few studies on proteolytic enzymes reducing TGF - bromelain (from pineapple) is a good example. Worth a look at PubMed.

Post moved to appropriate topic.

[Liam]

This will help you!

Go to : Profile/ Modify profile (left column)/ Look and Layout preferences
Check these two:
Show most recent posts at the top.  
 Show most recent personal messages at top.  

Also, I enjoyed your post and links (ShrubMed- love it    ).  I believe it would have been a tidy fit in the Oral Treatments - Vitamins, Prescriptions , Herbs, Supplements topic.  The topics are "pre-chosen" to direct areas of discussion related to Peyronies Disease.  You will find a great deal of freedom to say what you want, though.

When all else fails, go to " Open Questions" or General Comments.  Our search function is also a good tool.  

I will move these to the above mentioned topic later.

Welcome,

Liam

Post moved to appropriate topic.

[George999]

Welcome aphro!

Most comments will indeed fit under a preexisting thread.  The number of threads/topics is somewhat limited due to the maintenance overhead required from an administration point of view.  But comments submitted do not have to fit the thread in which they are posted 100%.  General compliance is acceptable.  A really diverse post could go under the General Comments topic.  The post you have just submitted here would probably fit nicely under the Oral Treatments section since that is the core of your content.

As for your suggestions, here is my take:

1)  Topical application of Vitamin E.  In my experience it can be helpful, but not helpful enough to justify the effort.  For things like sunburn topical Vitamin E is very useful.  So is Aloe Vera.  But I tried using it for Peyronies with no significant improvement.  

2)  The angiotensin connection.  I was actually hypertensive and taking a potent angiotensin drug when I contracted Peyronies and have since stopped taking it, so I doubt that angiotensin drugs would be significantly helpful.  

3)  TGF-beta-1.  This is certainly interesting.  I didn't know this about Astragalus.  (Gingko Biloba inhibits TGF-beta-1, I am taking it now and not finding it significantly effective ... also the angiotensin drug I was taking was a TGF-beta-1 inhibitor, but was not noticably helpful)  But Astragalus is something that I have been considering for reasons other than Peyronies.  I will definitely keep this in mind.  

4)  shrubmed.com - Thanks - nice cross reference which plenty of potential.  

5)  Bromelain.  I've taken it and found it to be not significantly helpful.  

The most helpful thing for me has been oral full spectrum Vitamin E.  At this point, I have found that increased sugar intake makes the Peyronies worse.  Based on that I am pursuing a course of attacking serum glucose and insulin levels.

But thanks again for posting and for taking the time to share your thoughts.

- George

Post moved to appropriate topic.

[aphro]

Welcome aphro!
...
The most helpful thing for me has been oral full spectrum Vitamin E.  At this point, I have found that increased sugar intake makes the Peyronies worse.  Based on that I am pursuing a course of attacking serum glucose and insulin levels.
...
- George

Post moved to appropriate topic.

RE: blood sugar.
Just came across this while tidying up Shrubmed. I have found that my panic disorder can usually be shut off by a few days of very low carb diet, followed by a Mediterranean style diet with moderate amounts of carbs from fruits and vegetables, little or no grains and sugar.  

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17664181

[George999]

That is a great find aphro.  Excessive serum glucose levels stimulation TGF-beta-1.  Why am I not surprised.  Also interesting comment about panic disorder.  I overcame panic disorder by using Aloe Vera soft gels.  And Aloe Vera is known to target precisely those processes.  The root of this problem and many others is known as Metabolic Syndrome.  You are doing the right stuff to kill Metabolic Syndrome.  The term used most commonly is not "low carb" diet, but rather "low glycemic" diet.  There are also other interesting supplements that have significant potential in this regard, such as forskolin, sesamin, cla, and fish oil.  Metabolic Syndrome happens when the liver can no longer keep up with the flow of triglycerides and begins to do some strange things.  Some people are genetically more susceptible to this than others because their livers have a reduced capacity to supply the necessary enzymes to break down fats.  It is  all very fascinating how this simple dysfunction can have a destructive effect in so many ways on our bodies from hypertension to diabetes and beyond.  And there is definitely a link to fibrosis and this link you have provided highlights that fact.  - George

[Tim468]

Interesting links, Aphro - and welcome to the boards.

"1) Vitamin E should be tried topically."

I think the problem is penetration into the tissue. The verapamil study that looked at penetration with iontophoresis demonstrated that it did enter, but that it was quite variable. OTOH, I know of no data that demonstrates that verapamil enters the tunica. If one could link vitamin E to something that crossed cell layers (like DMSO) then it might get in. You experience with sunburn relates more to the surface of the skin itslef - not deeper structures.

2) Re: angiotensin inhibitors - I have not tried any, nor do I know of any data on them. That makes some sense, but the furstrating thing about this field is how many things that make sense that do not turn out to help.

3) TGF - I have not tried that fungus preparation yet, but it sure sounds intriguing. I have used other "tonics" from China unsuccessfully,specifically Maitake mushroom extract.

4) The site is www.shrubmed.com - is a great find, Thanks!

5) My concern for all of the orally taken agents is to what degree they are inactivated in the stomach such that they are no longer active. I have tried bromolein, but it's lack of efficacy for me does not mean it may not work for others.

Tim, and welcome again.

[Liam]

Toona sinensis Roem (Meliaceae) leaf extract alleviates liver fibrosis via reducing TGFbeta1 and collagen.Fan S, Chen HN, Wang CJ, Tseng WC, Hsu HK, Weng CF.
Institute of Biotechnology, National Dong Hwa University, Hualien 974, Taiwan.

Toona sinensis Roem (TS) leaf tea as a health food for the improvement of blood sugar and hypertension has been demonstrated. Thioacetamide (TAA), a hepatotoxin, causes the progression of liver fibrosis. In this study, we tested the effects of TS leaf on TAA-induced liver injury. TAA (200mg/kg Bwt/3 days, i.p.) treated rats were orally administrated with TS leaf extract (1g/kg Bwt/10 days) three times. After 30 days treatment, the morphological data showed that TS leaf extract given to TAA-treated rats had less liver fibrosis. The GOT/GPT, collagen 1 and collagen 3 mRNAs of livers in TAA-treated rats were elevated when compared to normal rats. The improvements of GOT/GPT, collagen 1 and collagen 3 mRNAs were shown in the TS leaf extract given to TAA-treated rats. TS leaf extract given to TAA-treated rats showed higher levels of cytochrome P450 (1A1, 2A and reductase) than those of TAA-treated rats. Compared to the TAA-treated group, TGFbeta1 mRNA (RT-PCR) was decreased with an increase of TGFbetaR1 protein (western blot) in the TS leaf extract given to TAA-treated rats. The decreased tendency of FGFR2 was found in the TS leaf extract given to TAA-treated rats. The result implies that TS leaf possesses beneficial effects on liver injury through increments of detoxification and the metabolic pathway.

PMID: 17629604 [PubMed - as supplied by publisher]

Source: http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17629604&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

[Mew]

Can anyone give me some feedback as to wether Gamma Linoleic Acid (GLA) is good or bad for Peyronie's? GLA supplements come in the form of Evening Primrose Oil, Black Currant Oil and Borage Oil.

I have read GLA increases production of Prostaglandins -- is that a good or bad thing? Do Prostaglandins increase fibrosis or decrease it?

Just curious if one should take GLA in addition to Omega 3s (fish oil).

Cheers.

[George999]

You might want to read the latest posts in the "Open Questions" thread which cite research noting that PGE1 is perhaps beneficial in its effect on Collagen synthesis.  I think it very likely that ALL of these beneficial oils are being neglected in our societies mad rush to eliminate fat from the diet.  I believe that good balanced EFA supplements are, on balance, beneficial when it comes to dealing with Peyronies, but I wouldn't take excessively large amounts of them and I wouldn't take just GLA in isolation.  Fish oil, flax oil, CLA, ALA, GLA, these all have benefits for health in reasonable amounts.  - George

[percival]

After a year on the following supplements, I regret to report that there has been no improvement in my Peyronies Disease - in fact I think it has worsened slightly:

Acetyl carnitine/alpha lipoic acid
L-arginine
Gingko Biloba
Ginseng
Maca
Sunflower seeds
Cod liver oil

They seem to have caused me to put weight on, so I am discontinuing most of them.
Sorry to report a negative, but I'm afraid that's how it is.
Regards,
Percival

[ocelot556]

Has anyone ever heard of Vitamin E making peyronie's worse? My Urologist is going to make me wait a month before I can see him, and I figure maybe one of y'all will know. Every time I take 400 IU of VitE, within the next day or two the plaques causing the major bend get harder and more noticeable, and when I stop taking the E they seem to return to normal (though there are flareups and gradual worsening).

Also, what about topical VitE carried through the skin via DMSO? Would that get deep enough to soak into the fibrotic tissue?

[Tim468]

Percival,

I am so sorry to hear of your Peyronie's getting worse. Despite the feverish activity on this board, the reality is that most of us do not get much better or get worse. It is a depressing thought.

I am (or have been) on many of the same things. I do note one thing - coming off of some of them seems to be associated with getting worse - so it is possible that the supplements were keeping you better than you would have been. So keep an open mind to that possibility and pay close attention when you stop.

For me, the only thing that has really worked is the VED - it has reduced the curvature a bit and I am certain slowed the shortening and bending process. However, the progression for me has meant getting dents instead of curves. I'll take a dent over a bend any day, but it is pretty hard to take. I may need to start testosterone replacement, and will also start Pentox - so hope springs eternal.

Tim

[George999]

Percival, Sorry to hear that you are not doing so well.  I really do not see anything on your supplement list that could be making matters worse OR causing you to gain weight.  I am taking everything you are taking except the Ginseng, Sunflower Seeds, and Cod Liver Oil, and I have had little problem losing weight in the process.  Some of these supplements you are taking such as Ginseng, ALC, and ALA are actually taken by people to induce weight loss.  So it is very likely that other dietary items are driving the weight gain you are experiencing.  The only supplement I would advise caution with is Cod Liver Oil.  It can contain fairly large quantities of Vitamin A and too much Vitamin A can be seriously toxic, as in you can die from it.  So do be very careful with that.  Fish Oil and Flax Oil are much healthier options for the long term.  - George

Ocelot, Vitamin E has a longstanding reputation for making Peyronies better.  While I have heard reports of it being ineffective, yours is the first that would imply that it might be detrimental.  But my gut feeling is that that might be possible to happen if you are taking only the Alpha Tocopherol form of Vitamin E.  The reason is that it is suspected that taking only the Alpha Tocopherol form can actually deplete the other seven forms of Vitamin E.  That is why it is really better to take a natural, full spectrum form of Vitamin E for Peyronies.  - George

Tim, Great to hear of your progress with the VED.  I would trade in a curve on a dent any day!  Of course neither one is desirable, but dents are much more practical in day to day life.  

[MUSICMAN]

I need a little input please.  My general MD gave me a prescription of Potaba. I asked for Pentox but he said lets try some Potaba first. Since I do not have insurance I checked the cost of the Potaba before I had it
filled. ( I almost fell over at the cost for a 30 day supply ) Too much for me. Can someone give me a idea of the cost of the Pentox for a 30 day supply and the best place to get it without insurance?

[Hawk]

I think that you are much better off with Pentox (in combo with arginine and a Peyronies Disease E5 inhibitor) but if you go with Potaba go with the generic form Aminobenzoate Potassium.  I have no clue on the cost but is bound to be cheaper.  Hope Pharmaceutical sells it on line.  Remember this is an old drug for Peyronies Disease without impressive results other than gastric upset.

[MUSICMAN]

Thanks Hawk:  I wanted to go with the Pentox but my doctor wanted
to try the Potaba first. I'm going to advise him it is too costly for me.
Is the Pentox sold on line? Is there a generic? Any idea of cost?
                                                        Thanks

[Old Man]

Musicman:

In the FWIW department to you, I took over 13,000, yes thousands of potaba with the only results being gastric problems. My uro at the time wanted me to go with the long term schedule of potaba, but we finally gave up. 24 tablets a day for oh so many days! Ouch!!!!

So, if you can get your doc to go with Pentox, you would be better served.

Old Man

[George999]

Musicman,  Pentox IS generic.  The patent form is Trental which is now just a more expensive version of Pentox (Pentoxifylline).  - George

[PainIsGrowth]

I'm been actively trying to fight back this horrible condition for the last 6 months of my life.  I cannot thank this forum enough for providing me support and valuable information about types of peyronie's, fibrosis, and e.d.  I thought I would give back everyone, and maybe help out some new people, by sharing with everyone what has worked for me and what hasn't.  The doses are daily, and were taken for a least 1 month straight.
Supplements Over Counter
Regular L-Arginine (Doses between 1gram - 3grams) = No benefit and lots of upset stomach
Acetyl L-Carnintine(Doses between 500mg - 2grams) = No perceived benefit
Propyl L-Carnintine(Doses between 500mg - 2grams) = No perceived benefit
VASOFLOW (1-3 pills) = definite increase in erectile function, some nasaue
Muira Puama (500 mg) = No help for libido
Gotu Kola (1 gram) = No perceived benefit
Pine Bark OPCs (50 mg) = No percieved benefit
Ashwagandha (50mg ) = No percieved benefit
Zinc(30mg - 50mg) = No percieved benefit
Horny Goat Weed(500mg -2g's standardized 10% icarrin) = the only thing so far that has helped my nonexistant libido, and has helped the decreased sensitivity of genetelia.
Borage Oil(300mg) = No percieved benefit  
Vitamine E full spec(400mg - 800mg) = No percieved benefit
Korean Red Ginsing(1000mg - 3000mg) = Initial increase in erectile function...some insomnia with high doses


RX's
Pentoxifylline(800mg -1200mg) = 4 months so far, no noticeable improvements.
Cialis(5mg -20mg) = Temporary improvement in erectile function, initially only needed 5 mg to help, now up to 20mg. (no sides)
Levitra(20mg) = Stronger effect than Cialis, but works only for 4-6 hours, and gives me a stuffy nose.
Trazadone(25mg) = Helped NTE's initially, but then caused retrograde ejaculation.

Depression specific
Overall the hardest thing about this disease or condition is the mental toll.  If I could only take one supplement to help me get through this the rest of my life, it would be SAM-E.  Wow, I've taken the following RX antidepressant drugs in the past and nothing has come close to what this has done for my depression.  These drugs include Prozac, Lexapro, Remeron, and Wellbutrin.  If you have to take a RX, go for the Wellbutrin or Remeron.  But neither have done anything to help my depression like SAM-E.  Also, I read on the forum that SAM-E may have some type of anti-fibrotic effects when combined with PPC's.  I haven't seen any physical improvements since I started taking it, but the mental makes it worth it for me.

SAM-E(400mg - 800mg) = Amazing supplement.  Try an expensive reputable company like Solgar or Jarrow.  Its very unstable and needs to be enteric coated.

Things I still want to try to help increase nonexistant libido and lack of penile sensation.  Maca, Mucuna Pruriens,  Tribulus Terrestris, Tongkat Ali.  I'm too scared to try Yohimbe, becuase of the tons of negative reports I've read about it.  Also, my testosterone levels, Total and Free, and very high but I still have zero libido.  Do you think taking products that naturally increase these levels like Tribulus or Tongkat are dangerous?  I wouldn't be taking them for the testosterone effects, only the libido effects.  I don't know what else to try.  Thanks for everyone's support.

[George999]

PG,

Thank you so much for the feedback as to what has been helpful to you!  It is always good to see what is working and just might work for others as well.

Just a few comments on your libido issue.  First of all, as you have discovered, it takes more than Testosterone to generate libido.  And if your Testosterone is already on the high side, generating more of it is not likely to increase your libido.  In fact, you note that HGW is just about the only supplement that HAS helped your libido.  And HGW DOES NOT raise Testosterone levels.  My initial observation is that it may in fact be your depression issue that is knocking out your libido.  Depression is REALLY hard on libido.  The bottom line is that if you are not in the mood above the waist, you just won't be in the mood below the waist either.  Its a pretty easy equation and it has proven itself in my own experience.

Definitely use prescription medication if you must and if the doc thinks you need it.  But prescription meds do have side effects and I would avoid them if at all possible.  There are some good supps out there for depression and I will touch on that later.  But the really important thing to know about depression is that depression is many times more related to physiology than to psychology.  If you eat the wrong things and don't get an appropriate level of healthy exercise, you will be prone to depression.  Its not about Peyronies, its more about how you perceive and process the Peyronies issue and other issues in your life.

My recommendation in this regard would be the book YOU: On a Diet by Roizen and Oz.  If tells you what effect each type of food has on your body.  Once you load up on this knowledge, when you walk the grocery store aisle, you see foods differently.  And your diet changes naturally and you start to feel better and your whole outlook on life changes.  This book also discusses exercise.  You will find lots more info on the authors site: http://www.realage.com.   I also would recommend http:www.bodybuilding.com as a place to learn a lot about guy type health issues and to get tips on simple exercise techniques that can change your life.  They also have lots of info on supplements.

Then of course there are also those supplements.  One supplement I REALLY like in this regard is Peruvian Maca.  I have taken it for some time and greatly value it.  It is one of those supplements that is really hard to pin down as to just how it works.  But it has something to do with its seeming ability to normalize, not the levels, but the functioning of our hormones.  And there is some tantalizing research behind it.

Small-scale clinical trials performed in men have shown that maca extracts can heighten libido and improve semen quality, though no studies have been performed on men with sexual dysfunction or infertility. Maca has not been shown to affect sex hormone levels in humans In addition, maca has been shown to increase mating behavior in male mice and rats.

I would use caution with Mucuna Pruriens.  Mucuna Pruriens is an Ayurvedic herb.

In history, Mucuna has been used as an aphrodisiac. It is still used to increase libido in both men and women due to its dopamine inducing properties. Dopamine has a profound influence on sexual function.

In laboratory tests with mice, researchers found prolonged exposure to dopamine through this pathway inactivated a regulatory protein in the brain known as Akt and caused the mice to behave like they were depressed in response to stress.

So while Mucuna Pruriens might help your libido, it might also make your depression worse.

Tribulus Terrestris is another Ayurvedic herb.  I am currently taking this.  I am not noticing any significant effect.  From the info that is on Wikipedia, it doesn't sound too interesting.

The active chemical in T. terrestris is proven to be protodioscin (PTN), a cousin to DHEA. ...  one recent study found that T. terrestris caused no increase in testosterone or LH in young men, and another found that a commercial supplement containing androstenedione and herbal extracts, including T. terrestris, was no more effective at raising testosterone levels than androstenedione alone. SupplementWatch does not consider that there is any scientific evidence for effectiveness in muscle building. It suggests that it may be beneficial for those whose testosterone is below normal, such as dieters and overtrained athletes.

Tongkat Ali is from Maylasia.  Tongkat Ali does increase Testosterone levels.  It does this by acting directly on the Testes, thus making it potentially safer than Testosterone augmentation/replacement therapy which can actually result in further atrophication of the Testes.  But you already have plenty of Testosterone.  Increasing levels further could just add other problems.

One supplement you didn't mention, which I would recommend you try would be Aloe Vera softgels.  Aloe Vera, like Maca, is hard to pin down, but it tends to have a normalizing effect on the body.  You might find it helpful.

Another supplement I would recommend you try would be Bacopa, yet another Ayurvedic herb.  This is a supplement that I am taking for its potential to combat Metabolic Syndrome.  It seems to have zero noticeable side effects and has some research behind it.  It is believed to be a neurological tonic.

Antidepressant activity of standardized extract of Bacopa monniera in experimental models of depression in rats.

Sairam K, Dorababu M, Goel RK, Bhattacharya SK.

Department of Pharmacology, Institute of Medical Sciences, Banaras Hindu University, Varanasi, India.

Bacopa monniera Wettst. (syn. Herpestis monniera L.; Scrophulariaceae) is a commonly used Ayurvedic drug for mental disorders. The standardized extract was reported earlier to have significant anti-oxidant effect, anxiolytic activity and improve memory retention in Alzheimer's disease. Presently, the standardized methanolic extract of Bacopa monniera (bacoside A - 38.0+/-0.9) was investigated for potential antidepressant activity in rodent models of depression. The effect was compared with the standard antidepressant drug imipramine (15 mg/kg, ip). The extract when given in the dose of 20 and 40 mg/kg, orally once daily for 5 days was found to have significant antidepressant activity in forced swim and learned helplessness models of depression and was comparable to that of imipramine.

PMID: 12046860 [PubMed - indexed for MEDLINE]

You are definitely doing the right thing by avoiding Yohimbe.  Yohimbe selectively blocks certain receptors in the body artificially elevating levels of adrenaline, noradrenaline, serotonin, dopamine, etc.  I wouldn't dare take this supplement.  It can have nasty side effects which could be worse for anyone dealing with depression issues.  Bad news.  There are better choices.

So I wish you the best on this.  There is LOTS of good stuff out there.  Life is an adventure!  - George