The Possibility of Multiple Components ...

[George999]

Perhaps we can add bacterial infections to the list of suspects?

Bacteria linked to autoimmune disease

According to this new research, if bacteria infest a specific tissue, they can contaminate that tissue with weird lipids that cause the body to attack those body tissues.  Seemingly, even if the immune system kills off the bacterial infection in question, it has already been sensitized to the body tissue in which it found the bacteria and the auto-immune issue remains.  Yuck!  - George

[skunkworks]

Not I, my extremities have been a source of warmth for all those who have encountered them.

[newguy]

I've always had cold extremities too. My toes especially.

[slowandsteady]

I've had cold extremities too. I think there might be something to that. LED therapy to improve circulation might be an option too.

[BentYoung]

The more I research, the more I am seeing certain similarities in conditions that must be related to Peyronies Disease. Things like diabetes, angina (heart palpitations - which I have) and Vascular Disease are all mentioned within the scope of Peyronies Disease. Being young with this condition- I can certainly believe that I have congenital markers for Peyronies Disease. My grandmother has bad diabetes - my father has angina and Peyronies Disease and poor leg circulation leading to restless leg syndrome. This has to be a circulatory disorder. For my entire life I have has extra cold extremities like hands feet etc. I have never had ED, but I am thinking more and more that my extremities, including the most important of these, are slightly weakened due to poor blood flow - thus very vulnerable to injury.  So for now I am taking L-carintine, L Arginine and Pentox. Anyone have similar backgrounds?

[George999]

Skjald,  I agree completely with your post.  As I said in my original post "we need to always be open to new and radical explanations IF they are accompanied by substantiating evidence".  That is the big IF.  We also, of course, need to remember that MS is actually easier to treat, believe it or not, than Peyronie's.  In the case of MS, all you need to do is stop it in order to cure it.  With MS you don't need to actually repair the prior damage because the brain will rewire itself.  Unfortunately Penises and other body parts don't have that capability.  But my point with the post was that real solutions can come from directions we don't expect and we need to be careful not to get fixated on any one silver bullet.  I think that most of us already have that down, but there are a few of us that are so overly focused on what we think the underlying cause is that we are not taking advantage of what is already there, namely things like Pentox and the VED that are known to work well enough to at least stop Peyronie's from continuing to progress.  So I think we ARE on the same wavelength in this discussion.  - George

[lwillisjr]

Great post Skjald

[Skjaldborg]

I think it is a clear message that we need to keep an open mind as to the possible causative factors involved.  In the case of the MS discovery, I would say that BOTH auto-immune AND circulatory issues are acting in concert to create the problem.  Circulatory issues CAN trigger auto-immune processes and auto-immune processes can cause circulatory issues.  So we need to be careful not to argue over A, B or C when the answer is more likely ALL OF THE ABOVE.  AND we need to always be open to new and radical explanations IF they are accompanied by substantiating evidence.

I agree that an open mind is necessary for looking at the potential multiple causes of Peyronie's, multiple not only in that two people might have separate causes but that within one person multiple factors may be at work. However, an open mind must be tempered with a healthy dose of skepticism. The doctor in the story you posted has actually achieved significant results whereas most of the treatments discussed on this forum unfortunately have not been as effective in treating or curing Peyronie's as those in the article purportedly were for MS. Worse, some of the theories and treatments preached here are utter nonsense. For any theory about the causes of Peyronie's to be considered plausible, it must be tested and shown effective in stopping, preventing or reversing the disease.

Where does that leave us right now? We currently have viagra, pentox and VED. Each seeks to alleviate various symptoms or treat possible causes of the disease. Indeed, the results of these treatments are generally of limited efficacy but they are based on good science and are therefore better than the sundry dietary restrictions, teetotalism, beams of infrared light, herbs and other supplements bandied about on the forums. In some cases people have claimed that these, how should I say, alternative treatments have been effective. I do not doubt this on an individual basis but I am not confident that these treatments work across the board. Many have no basis in science and are instead based on personal belief systems, particularly those involved with abstaining from food or drink. It is only human that being made desperate by this terrible disease and finding so little succor that we feel impelled to try anything, so we fire up the infrared beam, pore over diagrams of the penile circulatory system to match up with our scars, slam a few vitamin E pills and hope for the best. I am not sure that qualifies as open-minded, unless it starts to work.

In my case, I have no other autoimmune conditions. None. I am 30, in very good health, have a solid family history (some arthritis, but most everyone lived a long time, hale and hearty into their 80s). I have taken very few medications in my adult life, no allergies and rarely get sick. I got a slight injury during sex one evening and *POOF* a few days later the business below my navel looks weird, hurts and I suddenly spend more time than I should talking to strangers on the internet about my penis. I have no explanation for it and neither do the fine doctors I have seen.

I will be open minded once I see a viable treatment besides pentox. I will be the first in line to have my jugular vein roto-rootered or whatever the hell it is they do. Until then, I remain a skeptic.

-Skjald

[Woodman]

I too believe my Peyronies Disease is due to a large part of an auto immune problem. I developed Achalasia in August of 07. Its a disease of the esophagus witch paralyzes the lower third of the esophagus and the lower esophageal sphincter. This in turn makes very difficult or close to imposable to get food or liquids down because the valve stops working and stays in the closed position. I had surgery in July of 08 to have my the lower sphincter (valve) cut so it permanently stays open for food and liquids to pass.

I developed Peyronies Disease in July of 07 Just one month before my Achalasia. Its another disease that they do not understand very well at all and has been discovered for several 100 years. The doctors told me they think its either auto immune or possably viral. The disease damages the neuro pathways that go from the brain to the muscles telling them to open and close the valve and move the esophagus so nourishment can get to the stomach.

I had both of these diseases happen to me at least start to show there symptoms within one month of each other that both are strange and not very well understood. Both thought to be auto immune possably. Iam 36 right now. The doctors told me I was rare to be so young with Achalasia.

Also to add to this I was born with bad allergies took shots most of my life to keep them in check and developed asthma at 17 after getting chicken poxs being that old.

All of this put together with what I have read on the subject with Peyronies makes me think an auto immune component has a lot to do with the cause of Peyronies Disease.

I wonder if we all listed our other health issues we think are linked to Peyronies Disease how many similarities we would notice.

Woodman

[skunkworks]

I think I can be reasonably certain that in my case, peyronie's is mostly auto immune, as I also have psoriasis, dermatitis and a few other auto immune conditions.

I don't doubt that circulatory issues could and most probably are involved, but how would they be found/investigated? Would it not show up in the tests that those with venous leakage undergo?

Although I suppose those tests really only concentrate on the specific genital region, if the venous issue was outside that focus, we might never discover it.

[BentYoung]

An excellent point George -the problem now is to find our "jugular vein anomaly." I was diagnosed with glaucoma at 19, which is unheard of rare (24 now), and have some other health issues that I could look at. Maybe I will look for a connection...If we can find our common denominator we may be able to beat this.   

[George999]

There has been much discussion as to the underlying cause of Peyronie's.  But before trying to decide which factor is the cause, perhaps we need to be open to the possibility that there are multiple related factors acting in concert.  I was taken aback by a recent article related to Multiple Sclerosis which has long been considered an auto-immune syndrome.  It seems an Italian doctor trying everything to cure his wife of MS discovered that she had a jugular vein anomaly.  Just to cover his bases, he corrected that anomaly surgically, apparently a rather simple procedure, and, lo and behold, her MS was cured.  So now he is convinced that physiological issues, and not auto-immune issues, are the cause of MS.  And, by the way, he has found in examining other MS sufferers, that they ALL have some sort of jugular vein issue going on.  And additional successful surgeries of this type have been performed since.  So this guy is being branded as a hero by some in the medical establishment and a heretic by others.  What does this have to do with Peyronie's?  Well, I think it is a clear message that we need to keep an open mind as to the possible causative factors involved.  In the case of the MS discovery, I would say that BOTH auto-immune AND circulatory issues are acting in concert to create the problem.  Circulatory issues CAN trigger auto-immune processes and auto-immune processes can cause circulatory issues.  So we need to be careful not to argue over A, B or C when the answer is more likely ALL OF THE ABOVE.  AND we need to always be open to new and radical explanations IF they are accompanied by substantiating evidence.  Most of the research on the relationship of circulation and disease is concentrated on the arterial end.  Perhaps more examination of venous drainage is in order.  That side of the equation is seldom looked at.  Another possible component would be viral infection.  And none of these potential components really acts alone.  They are all tied together in this strange dance that results in a disease state.  But where to find the weak spot to break the chain is the question.  - George