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

[Iceman]

guys - try this mix!!!

1) Pentox
2) ALC
3) Aloe Vera tablets

It really really takes the pain away
I was doing only pentox and acl but since introducing the aloe vera its been really wonderful - 5 days straight with near to no pain
TRY IT!!!

[George999]

Iceman,  Sounds Good!  Hope it lasts!  It would be interesting to know some specifics though.  Like HOW MUCH of each you are taking AND the SPECIFIC BRANDS and PRODUCT IDs of the supplements.  Personally, I am just getting over the trauma of a major flareup.  The first in a long long time.  I currently am lined up for a colonoscopy and quit my supplement regimen in preparation for the procedure.  I thought that being off of the supplements for a couple of weeks would be no big deal.  Within 48hrs, I awoke in the middle of the night with pain and a significantly deformed you know what.  Not only that, but the plaques which had been hard to detect were suddenly greatly enlarged.  This whole experience was traumatic for me.  I ran and downed a full gram of ALC and within a couple of hours everything was back to normal with no pain and a fairly straight erection as before like nothing had ever happened.  So apparently I am succeeding in blocking the symptoms, but not accomplishing a whole lot on the problem in general.  I had hoped for better.  So at this point I have obtained insurance authorization to see my urologist and am going to be appealing to him for Pentox.  I think it has more potential to address the underlying issues than all the stuff I am currently using and it is probably past time that I give it a shot.  He has connections at UCSF urology where Lue is and I hope that can help get me in the door with Pentox.  - George

[newguy]

George - Wow, that's pretty shocking. I suppose on one hand it does offer further confirmation that the supplement routine really can keep peyronies at bay in certain individuals - but on a more negative note, it appears to have done only that , 'keep it at bay'. The underlying issues appears to remain. This probably does suggest that, for even those with seemingly more stable peyronie's, it may not be the worst idea in the world to take pentox, as there's a chance that it could help make longer lasting improvements 'behind the scenes', rather than other treatments which possibly act as more of a temporary roadblock.

[Iceman]

george999:
I am taking 3 x ALC + Pentox + Aloe Vera per day - one in the morning, lunch and dinner - question george999, why have you never taken pentox before - you obviously know allot about the topic and are extremely helpful, so why the delay in pentox?
Also I saw Leu 3 months ago and you will be fine with the pentox - he gave me 6 months supply ; even though I did have to fly 14 hours across the pacific to see him...

[George999]

why have you never taken pentox before - you obviously know allot about the topic and are extremely helpful, so why the delay in pentox?

I haven't taken Pentox simply because I have being doing OK without it.  But now it appears that on top of everything else, I have a low level allergic thing going on with ALC that I am going to have to deal with.  For some time now I have had unexplained tail bone pain, flu like symptoms and on and off excessive itching which now appears to be being caused by the ALC.  And I am not sure that any of the other supplements or combinations thereof can fill in for the ALC.  That leaves things like Potaba and Pentox.  I personally view Potaba to have an effectiveness similar to ALC.  So, all things considered, I prefer to move up to Pentox, which I view as the superior treatment.  As I said previously, I already have insurance authorization to see the doctor.  Hopefully he will agree to provide me with Pentox.  - George

NOTE as of 07/20/08:  The above problem turned out NOT to be caused by ALC, but more likely by the particular formulation and brand I was taking.  I am now on another formulation and brand and am not having any problems.  - George

George - Wow, that's pretty shocking. I suppose on one hand it does offer further confirmation that the supplement routine really can keep peyronies at bay in certain individuals - but on a more negative note, it appears to have done only that , 'keep it at bay'. The underlying issues appears to remain.

Yup.  Pretty scary.  But we are all learning from each other's experiences, and that is a good thing.  Also, if the alternative is progression, then "keeping it at bay" is not so bad after all.  But I certainly more than agree that it is past time that I start getting more aggressive with this thing.  - George

[newguy]

George - I'm still quite shocked at how quickly your conditions returned after you stopped taking ALC. Is your conclusion that the inflammation returned and caused the symptoms to flare up? I can't see how anything more complex could've occured in such a short time. This would also be backed up by the fact that things returned to normal shortly after taking ALC again.

On the plus side, this info combined with a growing number of others posters opinions does seem to suggest that ALC has quite a pronounced impact on both and inflammation. On the negative side, you are understandably quite distressed by all of this. In hindsight you may have missed a trick by not adding pentox isn't the daily mix, but this isn't something you could've possibly known before now.

[George999]

Newguy,  I'm really puzzled in some aspects myself.  I don't know whether what happened is just some sort of weird coincidence, but it does seem that the flare up was somehow associated with stopping the ALC.  And at this point I also am having to contend with what seems to be a problem with the ALC itself.  I never would have suspected that tailbone pain could be caused by something like ALC and then the flu like symptoms that followed.  I finally associated the itching that followed all of that with possibly being associated with the ALC.  At this point I have cut way back on the ALC and still no problems with the Peyronies.  The itching is resolved but the Flu like stuff is intensifying and so I am hoping for a quick appointment and at least Potaba if I can't get Pentox so that I can get off of the ALC completely and find out what is going on with this crazy thing.  But I never would have suspected ALC of causing these strange symptoms which started very subtlely and just slowly built up over time.  At least I am almost through the weekend.  Everything medical gets worse on the weekends.  Its the placebo effect in reverse.  You KNOW you are not going to have easy access to a caring physician and suddenly death is literally knocking at the door.  But hopefully I'll also experience the positive side of the placebo.  You know, when you visit the doc and he says "Well, you don't look like you are dying to me."  And suddenly you feel like a new man.  All the pains melt away in an instant and you feel like a fool for even having made the appointment in the first place.  Oh well ...  - George

NOTE as of 07/20/08:  All of these problems were not caused by ALC as it first appeared.  I am now back on a different formulation and brand of ALC with none of the above side effects.  The old formulation contained Vitamin B-6 which *may* have been causing me a problem.  But it was definitely NOT the ALC that was to blame.  - George

[Iceman]

george999 - have you ever tried using a VED?

[George999]

george999 - have you ever tried using a VED?

Like Pentox, the VED is something I haven't used.  All the time I have been on the supplements, I have not had enough of a problem to even justify considering the VED.  But who knows?  At some point it might be my only remaining option.  At this point I am simply trying to find something that will serve me as well as ALC has in the past.  - George

[newguy]

George999 - The inflammation aspect of your condition appears to have taken the forefront. I would wonder at the rationale of trying to straighten out something that's 1) already sometimes straight 2) possibly very inflammed when off oral treatments. I could be wrong though, who knows, helping blood into the area could be just what you need. Like you said previously, we're all learning as we go along.

One thought. As well as the other oral solutions you're looking into, could you try taking a different version of acetyl l-carnitine (Propionyl-L-Carnitine, L-Carnitine - the latter may not be as useful/powerful i guess) to see if that has the same effect? You'd likely experience the same flu-like reaction, but maybe not?

I'm glad you're thinking of taking the 'pentox plunge'. When you consider the anti inflammatory nature of the drug, and the symptoms you recently experienced, I think there's every chance it could make a positive improvement.
 

[George999]

One thought. As well as the other oral solutions you're looking into, could you try taking a different version of acetyl l-carnitine (Propionyl-L-Carnitine, L-Carnitine - the latter may not be as useful/powerful i guess) to see if that has the same effect? You'd likely experience the same flu-like reaction, but maybe not?

The problem is that it is the "acetyl" in ALC that gives it its beneficial qualities.  But the "acetyl" represents "acetic acid" which might present some risks for someone who does not metabolize it normally.  And I am quite certain that it is the "acetyl" that is causing my problems and not the Carnitine.  So I am also laying of the NAC as well.  - George

NOTE as of 07/20/08:  Well it was not the "acetyl" or any other component of the ALC.  I am now back on a different formulation and brand of ALC and everything is kosher.  My apologies to all for the misleading attempt at analysis on my part.  - George

[newguy]

George - It's a real catch 22 situation. Maybe there's a case for sticking with ALC at a low level.. though it could follow that the tailbone and flu feelings will eventually return. It seems odd that you're developed some kind of , almost, allergic reaction. How long have you been taking ALC and the other 'acetyls' for? and in what quantities? Maybe it is toxic for some when taken for a certain duration. A break from it, or cycling it with the supplements you're hoping to replace it with could possibly help.

Does propionyl-l-carnitine contain  or convert to 'acetyl' at any point? If not, it could be useful to take it, as there is at least some studies suggesting that it can be useful in the treatment of peyronie's (when compared to 'l-carnitine' for instance).

Are you having any luck getting your hands on some pentox? I'm still struggling, as I'm currently looking for a new urologist, and in my experience, here in the UK (and maybe elsewhere), many medical professionals are not exactly open to ideas from patients. I am currently in contact with a website I ordered legitimate viagra from many moons ago. After providing them with relevant information they say that they are able to order in pentox. I know this is very much a 'second best' and am well aware of fake meds being peddled by many websites, but my previous experiences with them tells me that it's worth a shot. I will keep you posted.

[pal-31]

Dear all,

Can someone please tell me what kind of Aloe Vera (brand and type) they are using for inflamation and pain. Someone said that in combination with pentox and ALC it has stopped the pain. I purchased Natures Way laloe vera latex and leaf vegie soft gels. However this product may not be the one for inflamation.

My problem is that i have been in pain in the last 6 weeks after using the VED. I have not over pumped or anything. May have been a coincident. I am on

Pentox 2 x 400 mg ( been on it for 14 months with no improvement)
ALC 2- 3 grams daily
san vaso flow 3-5 gels a day
vitamine e 2 x 400 iu daily
ibuprofin 400 - 800 mg daily for the pain

Not to be negative or anything, but this disease is something else. It will sneak up on you and nothing you do seems to help. As soon as you think you stopped the progression it comes back and proves you wrong. Well it is frustrating.

Thanks in advance,
Pal

[newguy]

Pal-31 - That's the twisted nature of this disorder. What works for one person sometimes doesn't work for another. Throw into the mix that the condition is anything but constant, so it's not always obvious why improvements or more negative developments are taking place. Still, assuming you have no negative reactions taking pentox, ALC etc is something of a staple for us. As for Aloe Vera I use a Holland & Barrett version. It's likely only available in the UK though and there is nothing particularly standout about it, so you might need advice from other members here.

As for the VED, do you use it daily? How pronounced if your curve? Is the pain getting worse over time (the 6 weeks period), or is it at a consistent level? If it's getting worse and worse, it might be worth taking a break. Again, see what others think about this as I wouldn't want to be responible for advising someone to stop if the pain is only a slight discomfort?

[Iceman]

pal 31 - i really think it was the alc that has reduced the pain level - aloe vera might not be the key factor

[Iceman]

pal 31 - i really think it was the alc that has reduced the pain level - aloe vera might not be the key factor
also your post is really bad - it seems like even the pentox ( which is the most favoured drug development) is not even working - are yoy sure there has been no improvement - surely over this period of time there must have been an improvement in pain - see heres the frustrating part - one person says use the VED and it will help yet you are saying nothing has helped and even the ved ( hich you used correctly) has caused you pain....its just that there is no consistency and everything is so bloody variable its really starting to piss me right off!

[George999]

I know that this is the oral treatments thread, but I just want to throw in here that drugs and supplements aren't everything.  In my experience one can modulate pain and progression to some degree through diet as well.  Thus, I suspect that even if we are doing everything "right" on the drug and supplement side, if we are not policing our diet well, we can still have problems.  This stuff is REALLY nasty as you all well know.  And as one's blood sugar rises, it just gets nastier.  - George

[Iceman]

george999 - what foods make blood sugar levels rise?? is there really a link between this and Peyronies Disease inflammation?

[crank]

Old Man and Angus..

My Dr's. opinion was that the upward bend is caused by a long term residual effect of surgery to remove a testicle in 1967 after a botched vasectomy in 1965..altered the blood flow to the pelvic area..He found no evidence of plague..I asked him about VED therapy and his reply was, "Yes, that would be a good idea, and could prevent the condition from getting any worse."

I'm in for the 26 week protocol..

crank

Making the 1.25" i.d. ved today...However, that is smaller than the cylinders on the Fitzz website..they are 1.50",1.75",and 2.25" on the i.d....I hope it's not too Snug..

[crank]

I just realized that I posted the above in the wrong forum, but I cannot locate an edit function or delete post function on this site..  Sorry about that..

crank

[Old Man]

Crank:

If you want to get the post to another topic, you can copy and paste it to the correct topic. Also, the moderator can move it for you. Right now Hawk, the moderator, is quite busy, but he might have time to do it for you.

Old Man

[Old Man]

Crank:

Hey, I just remeasured my Soma small cylinder. The actual measurement is just under 1 and 1/2 inches. It is not a full 1 and 1/2 though as I stated in an earlier post. For some reason, the old eyes betrayed me!!

So, you might not want to make the small to the  1 and 1/4 inches!!!! Sorry about the mixup.

Old Man

[George999]

george999 - what foods make blood sugar levels rise?? is there really a link between this and Peyronies Disease inflammation?

What IS known is that diabetes is a RISK FACTOR for Peyronies.  Research is also showing that people with frequent blood sugar spikes are prone to some of the same maladies that diabetics are.  That is enough of a link for me.  Foods that result in blood sugar spikes include all refined sugars in various forms, all other refined carbs such as typical white bread, and starchy foods that convert quickly to sugars in the body.  I read EVERY label and it is absolutely amazing how many foods use sugar in significant amounts.  Ones that you would never guess.  Foods such as Yogurt with its healthy reputation tend to be loaded with sugars.  The ONLY sweets I touch with rare exceptions are fruits and sweet potatoes (yams are fine too as long as they are not cooked with sugar of course).  - George

[George999]

Well, to bring everyone up to date, I saw my local urologist today and asked him for Pentox.  Instead, after examining me, he gave me Potaba and insisted that he is seeing good results from it.  He also insisted that he thinks it will work well for me.  Then he told me that if it doesn't work OR if I have some adverse reaction to it, he will immediately write me out a referral to Dr. Lue who he seems to know personally.  This sounds like a pretty good deal to me, I have to say, I really appreciate my doc.  - George

[jackp]

George
Potaba and 400IU of Vitamin E 3 times a day is what my doctor put me on almost 15 years ago now. Curve went away in about 18 months.
Caution: Watch out for shrinkage as the curve straightens out size can go down about 20%. Use Old Mans VED routine to keep shrinkage to a minimun. I wish I had know of this 15 years ago.
Jackp

[George999]

George
Potaba and 400IU of Vitamin E 3 times a day is what my doctor put me on almost 15 years ago now. Curve went away in about 18 months.
Caution: Watch out for shrinkage as the curve straightens out size can go down about 20%. Use Old Mans VED routine to keep shrinkage to a minimun. I wish I had know of this 15 years ago.
Jackp

Jack,  Thanks for the tip!  Actually, while shrinkage would have been a concern for me a few years ago, right now I would be happy to settle for an absence of the fibrosis.  And if I can get 15 years of mileage out of that, I will be delighted.  I am sure that 15 years from now there will be a lot more treatment options (assuming I am even still around of course).  - George

[jackp]

Georeg
The last 15 years have been an uphill battle. The last 5 have been the worst. If i knew 5 years ago what I do now I would have had an implant then.
There is nothing worse on the spirit than 100% impotence.
Thanks to an loyal wife that never complains and the help of a VED I manage sometime.
Don't wait too long! Corporal Fibrosis will sneak up and take over.
Jackp

[George999]

So Jack, are you saying that you believe that Potaba actually made the fibrosis worse?  - George

Actually I guess you are if I read a previous post correctly.  I guess my response would be that certainly I will pay attention and watch for ANY adverse indications.  As I stated previously, my doctor assured me that he would refer me to Dr. Lue if I had ANY problems with the Potaba.  When I said I was not worried about shrinkage, I meant reduction in size.  That would not bother me terribly, but any form of fibrosis would.  That is what I am trying to get rid of, not exchange one form of fibrosis for another.  But I see no reason why Potaba would cause corporal fibrosis.  It is really just a modified B vitamin and several members of the B vitamin family are known to have anti-fibrotic properties.  I know of none that is pro-fibrotic.  But I also know that some of the same factors that drive Peyronies also drive corporal fibrosis, meaning that anyone suffering from Peyronies may also be vulnerable to corporal fibrosis.  So it is a possibility that you developed corporal fibrosis in spite of Potaba rather than as a result of it.  But in any case, I do really appreciate your spotlighting the issue and be assured, I will be on the watch for any adverse corporal changes.  Most of the complaints I have seen regarding Potaba suggest only a simple lack of effectiveness.  - George

Incidentally, I am now off of ALL supplements for four days and my Peyronies status is holding stable with no signs of any kind of flare up   .  The brief flare up disappeared with a few ALC capsules and failed to reappear when I ceased taking them.  I have no idea as to what the explanation is for this.  But that is how things are going.  - George

[jackp]

George
I did not mean that the Potaba caused fibrosis.
Three things cause corporal fibrosis, a. lack of night time erections, Venous Leakage and c. injection therapy for ED.
When we loose night time erections the corpora's will start to scar. When the Peronies curve straightens out you will be left with the short side. The penis is less active and then the fibrosis sets in.
Injection Therapy for ED is even worse. You cause scar tissue each time you stick a needle in your penis.
When the ED pills do not work or work well, then you try shots and they do not work well or not at all. By that time corporal fibrosis has taken over.
One other sign of corporal fibrosis is erections that are less firm and keep getting less firm over time. This in my case was Venous Leakage.
If you have a color doppler and the doctor says you have Venous Leakage schedule an implant then, things will go down hill fast from there.
Potaba and Vitamin E are the treatment for Peronies Plaque. In my case the curve straighten out in about 18 months but left me with about a 25% loss in size. (I should have been put on a VED in the beginning not years later).
That is my story. I am now waiting on a referral to Vanderbilt University in Nashville to have a corporal resection and then an implant, a 3-4 hour procedure. Not many doctors are qualified to do this.
That is my story. Corporal Fibrosis is sneaky, be careful.
Jackp

[George999]

Thanks!  - George

[George999]

As the days pass, I am beginning to suspect that the flu like symptoms that I have been attributing to ALC were actually viral symptoms after all.  And that may be an indication that anyone experiencing a viral attack should immediately stop taking anti-inflammatory supplements and/or drugs.  Many of these supplements and drugs have the effect of inhibiting TNF-Alpha to some degree and TNF-Alpha is a component of the immune system.  Thus, fighting inflammation has the intention of correcting an over active immune system.  But that is not something you want to do when you need that immune system to be in top shape.  In my case, I experienced probably the worst flu experience in my life in terms of body ache and pain.  That all got better when I cut the supplements and surged back when I resumed the ALC.  But ALC helps with Peyronies.  So that makes me wonder whether ALC also has anti-inflammatory qualities that hindered my immune system from responding to a viral attack and made the symptoms worse.  In a similar vein there is now discussion in the research community regarding new evidence that anti-inflammatory treatments appear to slightly increase cancer risks due to the same phenomenon.  Everything comes with a price.  - George

NOTE as of 07/20/08:  Whatever the problem I was having, it appears NOT to have been related to ALC after all.  I have been on another formulation and brand of ALC for a full week now with none of the above symptoms.  Whatever I was experiencing was apparently linked to the specific brand and formulation I was taking.  That formulation did have a Vitamin B-6 component which could have actually been the culprit although even that seems like a stretch.  At this point, I am just going to use added caution with Vitamin B-6.  - George

[bodoo2u]

AH-HA!!! So I guess the ALC, Mangosteen Juice and other inflammatories that I have been taking actually could be the reason my White Blood Cell count is one whole point lower (3.5 in a lab where 4.5 is the lower acceptable limit) than is should be. My baody may be trying to fight stress or something and is not have a lot of success.

So what about it, George and anyone who cares to comment. Should I lay off the supplements for a few days?

[pal-31]

George,

That is scary then. Are you saying that anti-inflamatory like ACL, Pentox, Ibprufin, can lower the imune system and could lead to cancer ? Which of these would be anti-inflamatory ? Are we taking too much of ALC I take 2 -3 grams a day.

Since all of this have minimum effect on my Peyronies Disease, I would rather not expose myself to the risks.

Ideas, thoughts.

Thanks
Pal

[George999]

The reality is, inflammation is an immune response, an inappropriate one, but still an immune response.  There is really no way to quell an immune response without modulating the immune system in some manner.  The fly in the ointment is that inflammation itself can cause cancer.  So pick your poison.  You can contract cancer from allowing inflammation to proceed unchecked AND you can contract cancer by treating the inflammation and thus weakening the immune system.  There are no easy choices.  My point was that when there is something OBVIOUS going on like something that appears to be a virus OR a known diagnosed cancer, one might be better off to forgo the anti-inflammatories if possible.  There are NO risk free choices.  Treating a condition carries risks and not treating that condition also carries risks.  There is likely SOME safety in avoiding extremes and using common sense.  And, by the way, Pentox is a very powerful anti-inflammatory that would definitely affect the immune system and that is why some people here have stopped taking it at times when they felt they needed their immune system in top shape to deal with an issue.  The reality is ALL drugs carry significant risks (read the paper that comes with them), and supplements that are effective are really just drugs in disguise and carry risks as well.

Bo, I WOULD DEFINITELY quit the supplements for a week or so and THEN get the test done over.  Usually these tests are done multiple times anyway since labs are known to screw them up some times.

Pal, Peyronies thrives on inflammation.  ANYTHING that helps with the Peyronies is likely to be anti-inflammatory in some shape or form.  The only way to avoid the risk of these oral treatments is to use the VED instead which carries its own risks.  In both cases though, the benefits usually significantly outweigh the risks.  But that doesn't mean we should not be aware of the risks.  - George

[ThisSux]

Hi All,

Take this for what you will, I thought it was worth reporting though I am sure many may disagree (and certainly some Peyronies docs do). I wasn't sure if I should post this but the discussion below about health effects from the various alternative treatments convinced me it is worth consideration.

I had an appointment with My Uro (who is a well-known peyronies specialist) a few weeks back and I took the opportunity to ask some questions regarding alternative treatments that some people here are using (myself included).

The summary of the conversation is the following, but i should note these are not his words exactly:

Probably doesn't do anything to help:
Vitamin E
L-Arginine
ALCAR

Might do something
Pentox (in early stages)
Potaba
Colchicine (in early stages)

And on Collagenase, might be effective but we probably wont see it until 2012.

I mention this because recently I have stopped taking vitamin e, ALCAR and nearly stopped taking Arginine. ALCAR i stopped taking after 2 years of daily dosing because i think it was giving me some weird memory side effects (tip of the tongue feeling), vitamin e due to recent studies showing increased mortality rates (at high doses), and arginine because, well i keep forgetting.

I still use HGW occasionally (and like it quite  bit) and I do actually think Arginine gives me stronger erections.

[Iceman]

thissux,

from what you are saying then your uro is in  contradiction to what has been posted here - since using alc my pain has decreased allot and i am in much less pain -  

[George999]

Doctors, like all of us, have opinions about supplements and medications.  Unlike us, they have some specialized training that puts a little more weight behind those opinions, but in the end, they are still just that, opinions.  I don't think that we should get overly emotional in evaluating those opinions.  If a particular medicine or supplement seems to be helpful at a given time, then use it and share your good experience.  But telling anyone off because of their honest opinion, EVEN IF it may be incorrect, is out of place on this forum.  Iceman, please edit and reword your post in a way that reflects the kind of civility that is expected around here.  I understand your frustration, but do your venting in private, not on a public forum.  It can be unnecessarily hurtful to others and, in the end, it will be hurtful to you if you don't deal with this.  I always appreciate your posts, keep up the good work!  - George

[Tim468]

George,

Very interesting observations... and I am sorry that things are flaring for you.

Previously, I have wondered about your plaque(s). It has seemed odd to me that they can get bigger and stiffer and then regress so quickly. It seems that this cannot be fibrosis - it seems instead to be some sort of acute non-fibrotic change in the elasticity of your tunica (or perhaps some adjacent plane of tissue). I assume that the areas of induration are not freely movable (ie they are not within the soft-tissue plane of the skin overlying the tunica). But I wonder if either the tunica or just deep to the tunica (getting into the corpora) have areas that can somehow swell and shrink for you in ways that are different than the mechanisms of fibrotic change.

This is more than just idle speculation - if it is not fibrosis, then pentox may not be of use to you.

Would it be of value to get a color duplex ultrasound while erect to see what tissue plane is involved? I even wonder about the value of MRI (although that is still fairly experimental, and the consensus in the uro community seems to be that it does not add much for it's cost). Still, to be able to better define the anatomic plane of concern for your case might be really important.

In a way I am glad that you determined that you had a cold (sorry for you though!). Although it is interesting to speculate that the immune system is overmodulated, it may be reading too much into your ups and downs. Similarly, I don't think a white count (Bodoo'd)  could be held down either (and one point or so is a trifle anyway).

Glad to be back and catching up.

Tim

[George999]

Tim, I suspect, in answer to your question, that my plaques are actually NOT changing in size at all.  But rather, what is changing dynamically is the level of inflammation surrounding those plaques which causes them to FEEL larger or smaller depending on how inflamed they are at a particular point in time.  In the case of someone with a relatively stable level of inflammation, they would not notice any rapid changes in the size of the plaques.  However, I suspect that for whatever reason, my inflammation levels are rather dynamic at times and the changes are extremely obvious.  At this point, I am gradually adding a FEW key supplements as I perceive the need.  For example, after a week or so without healthy night time activity, I felt that this was not a healthy thing to continue and so I added back the VasoFlow and the HGW.  Without two days all that has returned to normal.  The leg pain has receded to almost nothing and so tomorrow I am planning to go ahead and schedule the colonoscopy and get that out of the way.  I am also planning to hold off on the Potaba and ask my uro for a referral to Lue for an evaluation and second opinion on whether to go with the Potaba or the Pentox.  I am really not looking forward to the 6 or 7hr trip to San Francisco, but I really don't feel comfortable with a long regimen on Potaba either when the pharmacology of Penoxifylline looks so much better to me.  As for the ALC, I really don't know myself what was going on there, but I felt it my duty to post the information, since it seemed to me an indication that I should have quit the ALC a lot sooner than I did and should have waited for the symptoms to correct before attempting to restart it.  As for the future in terms of the supplements, I remain convinced that the underlying cause of Peyronies is actually a matter of metabolic abnormality and therefore plan to continue using both diet and supplements to try to force that back in line.  And, in that vein, I actually consider diet to be a far more potent tool than supplements.  After all, in my own case at least, it was bad diet that got me where I am, and it will likely be good diet that will be most useful in effectively reversing the damage.  And that is a matter of gradually correcting a whole universe of anormal levels of hormones, proteins, enzymes, and other exotic substances within my body.  And even if that is not "doable", at least I should be able to pull them closer to normal and keep them from moving more in the metabolic syndrome direction and in my mind, every little bit should provide worthwhile benefits.  Welcome back!  Thanks for sharing your thoughts!  I wish you the best!  - George

UPDATE AS OF 07/20/08:  The problem with the ALC turned out to be linked to the specific formulation or brand.  I have currently been taking another brand and formulation at the same dosage level for a week now with no recurrence of the problem.  - George

[mustang6540]

OK I'm new here. I'm freaked out. I'm concerned. & I guess I now have this disease. I'll be making a doctors appointment next week and from there probably an appointment with a urologist. In the mean time I'm researching and since y'all seem to have varying degrees of the same problem (no pun intended) I'm betting y'all have the best information.
SO has anyone tried any of these natural supplements? Neprotax Pyrotab Peyrotine.
A little info: 49 years old, I don't recall hurting myself. It looks broke when erect, bending down. Some discomfort when erect.
Any advice?
Thanks

[George999]

Mustang,  Forget the Pyrotab stuff.  Its a well known useless rip off.  - George

[Iceman]

tim468,

my uro told me that i had atypical pyronies and that the injury was on the support structure ( almost like the support beams) and not on the top - will this affect ved usage??

[Iceman]

george999 - why dont more people use VED if its is proven to be so successful? How come we do not hear of enough success stories regarding its usage - where do the people go who have had success with Peyronies Disease treatments whether oral or VED

[ThisSux]

george999 - why dont more people use VED if its is proven to be so successful? How come we do not hear of enough success stories regarding its usage - where do the people go who have had success with Peyronies Disease treatments whether oral or VED

Hi Iceman,

I think this is a common thread with all illnesses. Often people that have success with a treatment for an illness don't post and don't visit forums and often don't even go back to their doctor. This is one reason why I have stopped googling various symptoms and ailments (non peyronies related) because you usually only read of the worst cases. Sadly not many people come on to say "this worked for me" or "there were no side-effects".


TS

[mustang6540]

OK one down. Thanks George.

[Tim468]

Iceman,

Your uro's analogy is sort of lost on me. In general, I would ask a doc to explain in terms that I could understand, but to also please write down the relevant technical terms so that I can later look them up.

In this case, I am really not at all sure what he meant by "support structure". In any event, I think that a VED is a good way to go - little downside and potential help.

Tim

[Iceman]

has anyone thought of using aloe vera or emu oil ( which is said to have powerful healing benefits) plus dmso - just a thought...

[Old Man]

Iceman:

My belief as to why guys don't report their success with the VED is the same for just about therapies that have been tried and worked. There has been success with oral therapies as well as other methods, but those that had the success never seem to come back and let the forum know.

In the case of VEDs however, some guys are just reluctant to put their tool into a tube and pump pressure on it. My first encounter with the VED in my uro's office did not work out so well either. After I got home with the thing, I spent about two days working with it until I got "used" to the feeling of added pressure. Since that time I have had great success with the curves and other symptoms and at present I am just as straight as I was before Peyronies Disease struck.

Maybe those having success will come back and let us know the whys and wherefores of how much success they had and how they got it.

In the meantime, those using VED therapy should keep it up and at least keep their penises healthy from the blood flow standpoint.

Old Man

[George999]

The VED has another additional major problem.  That is, it is not a like a drug that can be patented and sold at a huge profit in order to pay off clinical trial debt.  That being the case, who in their right mind would put money into actually testing it to verify its effectiveness.  The business model for such an endeavor simply doesn't exist.  Who knows how many potentially effective treatments for a long laundry list of diseases have suffered the same fate.  Major medical institutions are in business to make money, NOT to heal people.  I am truly convinced that a large number of doctors are sincerely in business to heal people, but medical corporations have NO social conscience.  Their only obligation is to their stockholders, and they are the only institutions with the wherewithal to drive medical innovation.  Its that simple.  - George

[newguy]

Also, I think people are generally sceptical of physical solutions to problems. We live in a society where 'popping a pill' is seen as the primary solution to everthing. Of course medication can play a role, but 'there's more than one way to skin a cat'.  Where pyhsical solutions for problems are concerned most people think of 'operations'.

The VED takes time and dediction, which sits at odds with a quick fix culture. Many people give up before they have given it a chance to work, and therefore they develop a somewhat false view of the treatment. As has been pointed out previously, where results are achieved, most people do not feel the need to share their success with others. It also has the unfortunate 'sex toy' reputation.

Perhaps the greatest shame of all of this is that even some urologists sneer at VED useage. If they put their preconceptions aside for a moment and thought about the process behind the VED useage, they'd perhaps come to the conclusion that it can be beneficial.