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[KAC]

I'm curious what your other arthritic syndromes are.  I had Reiter's syndrome when I was 18--I was on crutches for about 6 months--and have wondered if Peyronie's is related.  Perhaps the syndrome made me more susceptible.  Has anyone else had Reiter's syndrome in their youth?

[George999]

My Urologist believes it to be genetic, and not AI.  But I have other arthritic syndrome type things happening that lead me to believe it's AI.  Valuable info.

Genetic and AI are NOT mutually exclusive.  Genetic damage can and will cause AI activity.  When a cell is genetically damaged the immune system will attack it.  That is how the healthy body gets rid of cancer.  And when enough cells in a given tissue are uniformly damaged, they will trigger an immune response that will reinforce itself as it progresses.  Even the smallest physical or chemical trauma can unleash this cascade by bringing inflammation to a tipping point.  The cytokines released against the damaged cells in turn damage other weakened cells and the whole process snowballs to the point that large areas of tissue are involved.  This is where the medical profession gets it wrong.  Instead of viewing health problems holistically, they try to buttonhole everything to simplistically fit their theories.  Its like the blind men examining the elephant.  The animal is a sum of its pieces, but all the blind me perceive is the pieces.  Similarly physicians always try to find the ONE pill or procedure that fixes the symptom rather than trying to address the underlying upstream physiology that is causing the problem in the first place.  - George

[Tristen]

I'm curious what your other arthritic syndromes are.  I had Reiter's syndrome when I was 18--I was on crutches for about 6 months--and have wondered if Peyronie's is related.  Perhaps the syndrome made me more susceptible.  Has anyone else had Reiter's syndrome in their youth?

I haven't had anything actually diagnosed except Osteoarthritis which I've had for decades.  In the last few years I developed other arthritic symptoms that seem different....they seem more an inflammatory process.  And I'm in process now getting that diagnosed. Lots of RA in my family...a-typical kind of RA in some ways.
My sister and mom have it severe.

I had to look up Reiters.  Googled up a number of links with key words Reiters and Peyronies. 

[Tristen]

My Urologist believes it to be genetic, and not AI.  But I have other arthritic syndrome type things happening that lead me to believe it's AI.  Valuable info.

Genetic and AI are NOT mutually exclusive.  Genetic damage can and will cause AI activity.  When a cell is genetically damaged the immune system will attack it.  That is how the healthy body gets rid of cancer.  And when enough cells in a given tissue are uniformly damaged, they will trigger an immune response that will reinforce itself as it progresses.  Even the smallest physical or chemical trauma can unleash this cascade by bringing inflammation to a tipping point.  The cytokines released against the damaged cells in turn damage other weakened cells and the whole process snowballs to the point that large areas of tissue are involved.  This is where the medical profession gets it wrong.  Instead of viewing health problems holistically, they try to buttonhole everything to simplistically fit their theories.  Its like the blind men examining the elephant.  The animal is a sum of its pieces, but all the blind me perceive is the pieces.  Similarly physicians always try to find the ONE pill or procedure that fixes the symptom rather than trying to address the underlying upstream physiology that is causing the problem in the first place.  - George

Good point George.  He could have meant "primarily" genetic....but honestly, it's probably more along the lines of what your describing.

[hunchback]

my major incident happened 2 months after a prostate saturation biopsy (24 needles!! while awake!!). when i suggested to my urologist a year later that i thought it was an autoimmune issue related to the biopsy and this was one of my two main theories of the etiology of my peyronie's, he said the two where unrelated.

this guy is very knowledgeable and up on the latest stuff. I travel 2 hours to see him. i trust his knowledge and his approach, however i am concerned his answer was more of a liability related answer. i have tried to focus on solutions rather than causes, however, if i ever need another biopsy any suggestions on preventative measures in case it could be an autoimmune reaction?

[goodluck]

I have been identified with Hashimotos which is an autoimmune condition that attacts the thyroid gland.  I also have markers for autoimmune Arthritis and or Lupus but have not developed symptoms.  Alopaths pretty much have said do nothing.  Wait untill the symptoms to warrent pain killers or hormones.  They are not proactive.

Kinda like watching a fire start in your house and be told we won't help you untill the fire gets worse.

Is there a relationship to Peyronies?  Probably.

Is it worth having a poll?

[lespleen]

Some fairly substantial advances have been recently made by one of the codiscoverers of HIV in France in the treatment of a select number of autoimmune conditions via low dose Interleukin-2 which stimulates the production of T regulator cells. These results, published in the New England Journal of Medicine on November 30, 2011 open new perspectives for the treatment of autoimmune and inflammatory diseases.

http://www.nejm.org/search?q=Interleukin-2

http://www.medpagetoday.com/Rheumatology/GeneralRheumatology/29956

[Tristen]

So just some thoughts on this, nothing scientific.  

If we have an abnormal response to micro trauma that appears autoimmune, and at least related to an inflammatory condition, what could be the cause such a pathological process? I would be very interested in seeing a Peyronie's poll on inflammatory diseases.  I favor infection ahead of genetics for an etiology.  

Infection= abnormal immune responses & possible gene rearrangement = disease

I think infections are a better hypothesis then genetics.  My money is on a virus causing the hyper immune responsiveness.  This is found more and more to be true of many autoimmune and inflammatory diseases....why not Peyronies? They've been trying to tie BPH and Prostate cancer to a HGRV (Human Gamma Retro Virus) for several years now.  The virus could have been passed down vertically from generations ago causing the appearance of genetic involvement.  Anyhow, that's my thoughts on this matter of autoimmune involvement.  

If the core etiology is a pathogen, it's several years off before they get that one down.  But at least we could deal with the inflammation and avoid other risk factors.  

[goodluck]

This is all very interesting. 

I really think it would be worth having a poll of members to see how many members have an autoimmune condition or triggered a marker for one.
Once someone has one autoimmune condition they are likely to get more.  I was told by an herbalist that autoimmune diseases are related to a retrovirus.  I can't claim I understand what this means but I intend to follow up on it.

Right now people seemed to be focused on Pentox, Uquiquinol, controlling blood sugars and VED. This is all good, but there is obviously more to learn.  If I am way off base tell me.


James, is such a poll something you can easily set up?

Good Luck

[George999]

It is beyond dispute that Peyronie's is associated with multiple causative factors.  I would also argue that all of these factors are metabolically interconnected.

DHEA: Low levels of DHEA are seen in many of the autoimmune diseases, and higher daily intake of DHEA is associated with improvement of symptoms in many. A typical daily dose of DHEA for autoimmunity would be 50-200mg per day. However, since DHEA is a hormone, doses in excess of 50mg per day should be supervised by a physician. A male hormone profile or female hormone profile which includes evaluation of DHEA should be performed at the beginning of treatment to monitor hormone levels.

 http://drmyattswellnessclub.com/autoimmune.htm

Research has pinpointed low DHEA levels as a marker for many degenerative diseases and accelerated aging. The hormone has been implicated as a contributing factor in a host of health problems, including Alzheimer's disease, autoimmune disease and other immunological disorders, cancer, chronic fatigue syndrome, diabetes, heart disease, high cholesterol, memory problems, obesity, osteoporosis, and stress disorders.

What's more, the collective indirect evidence from more than 5,000 published studies overwhelmingly supports DHEA's anti-aging role. Scientists now have proof that DHEA: * Enhances immunity

http://www.anti-agingmd.com/dhea.html

In a study of ten women with the autoimmune disease Sjogren's syndrome, all were shown to have decreased serum concentrations of DHEA-S and an increased cortisol/DHEA-S ratio compared with healthy controls (Valtysdottir et al. 2001).

http://www.lef.org/protocols/prtcl-017.shtml

Decreased levels of DHEA have been found in people with autoimmune disorders like lupus and immune deficiency syndrome. ... In patients with lupus, an autoimmune disease where the body attacks itself, studies show that DHEA helps regulate the immune system and may reduce the need for medication and slow the frequency of flare-ups. Clinical tests are ongoing to test how DHEA treats other diseases as well as autoimmune disorders.

 http://www.livestrong.com/article/12040-increase-dhea-reduce-chances-autoimmune/

I could go on and on.  There are tons of citations out there discussing the association between DHEA blood levels and auto-immune disease.  The fact is, DHEA is one of the major NATURAL steroids in the body.  What do they give to treat auto-immune disease?  Usually some sort of synthetic steroid.

Nestler showed, in several different ways, that increased levels of insulin drive DHEA levels down. Nestler also cited evidence obtained in his laboratory that insulin inhibits the adrenal 17,20-lyase activity in man that is needed for DHEA synthesis (JCEM 74: 362-7, 1992) In addition, according to Peter Hornsby's talk, insulin increases the activity of the 3HSD enzyme that destroys DHEA. Thus, insulin both inhibits the synthesis of DHEA and accelerates the breakdown of DHEA. However, DHEA has no effect on insulin levels, and has no effect on insulin sensitivity (type II diabetes) in humans.

 http://www.lef.org/magazine/mag95/95sep4.htm

Note:  I DISAGREE with Nestler's assertion that DHEA has no effect on insulin sensitivity.  I believe that the relationship between insulin and DHEA is a metabolic loop.  Both have an effect on each other.  The more insulin, the less DHEA.  The more DHEA, the less insulin.  What REALLY effects this loop on both ends is blood sugar levels and PRE-EXISTING insulin resistance.

Insulin is used to lower blood sugar. Insulin can also lower the amount of DHEA in the body. By lowering DHEA in the body, insulin might lower the effectiveness of DHEA supplements.

 http://www.rxlist.com/dhea-page3/supplements.htm

Again, I could go on and on with references here.

FINALLY, I would point out the OBVIOUS.  An increase in blood sugar levels causes an increase in insulin levels as the body struggles to metabolize serum glucose.

So ... its BLOOD SUGAR ↑ → INSULIN ↑ → DHEA ↓ → AUTOIMMUNE RISK ↑

And that spells out the connection.  Lowering blood sugar levels AND blood insulin levels AND supplementing with DHEA are keys to lowering autoimmune activity in the body.  - George

Oh ... and by the way ... some believe the cause is genetic.  But what causes genetic damage?

In vitro studies showed that insulin induced the number of AP sites (apurinic/apyrimidinic sites, a bio-marker of DNA damage), and this effect was dependent on high FASN expression. NMU (DNA alkylating agent)-induced colon cancer cell apoptosis was enhanced by the silencing of FASN. These collaborative results suggest that SPI diet decreases circulating insulin levels, colon FASN expression, and insulin-induced DNA damage, and attenuates FASN-mediated anti-apoptosic activity, to exert its cancer-preventive actions in the colon.

So there you are again.  Autoimmune activity, genetic damage, etc. etc. ... What is capable of causing ALL of the above?  TOO MUCH INSULIN!

So why do I keep taking this back to blood sugar issues?  Because what are you going to do to control autoimmunity?  It gets pretty complicated.  Again, what are you going to do to deal with genetic damage?  Again, pretty complicated.  But when you follow all of this upstream to blood sugar levels, it gets simpler.  Lifestyle.  Diet and Exercise.  Thats where you can get leverage over the whole string of issues that follow.  Its the root of the problem where you can actually make a difference by taking a few relatively simple steps.  Pumping up DHEA-s levels is also not complicated.  So why drive this into areas where there is little hope for help?  Why not deal with those things we CAN deal with and by doing that actually having beneficial effect on those things we CAN'T address directly?

[james1947]

goodluck

After reading George last post (and other previous posts by George regarding causes of Peyronie's disease) it seems that we need to make many polls if we want to understand what people are thinking about the trigger of they Peyronie's.

Arranging a poll is quiet complicate because is difficult to define the questions that it will give you a real picture and to be relevant we need to have many participants as possible. From past experience, very few members have answered to polls so the polls became irrelevant.

I am proposing in this stage that all the members that are interested to answer to the questin if they have AUTOIMMUNE CONDITION prior the PEYRONIE'S to PM me and let see how many PM's I will get in the subject.

James

[Hawk]

James very clearly outlined the problem with trying to get answers to complicated questions with a simple one question poll.  In addition, lets say we could boil it down to a a clear question and a couple of clear answers for choices.

For instance, if 20 people answered "yes I had an autoimmune condition" and 10 people said "I had no known auto immune condition" ...... what would we know?  We would only know that more of the men with Peyronies Disease on this forum that are interested in answering the pole had an auto immune condition.  Does that mean more had the condition or not?  Even if we knew the answer for every member here it would be meaningless unless we also knew the answer for a control group of similar age males either without Peyronies Disease symptoms or randomly picked from the population.  If we knew that half of all the men here had a marker for an autoimmune condition and that the same is true for a randomly selected group of men then we would have the beginnings of an answer but that is far beyond what we can determine with a pole or even a several question survey.

[George999]

I would add to the comments of James and Hawk (which I think make very excellent points).  There is more to this than even what James and Hawk are suggesting.  There remains the question of just exactly what constitutes an autoimmune condition.  If a person answers yes on the pole, does that mean they ACTUALLY HAVE a DIAGNOSED autoimmune condition OR that they BELIEVE they have or have had an autoimmune condition.  This is why research studies that get ACTUAL RELEVANT and USEFUL information are extremely complicated and expensive.  Otherwise you simply have an OPINION POLL and opinion poles, while interesting, and perhaps useful in a political setting, are totally useless in medical research.  That is why doctors don't simply solve medical problems by polling their patients.  NO ONE does.  Why?  Because doing so tells us NOTHING and actually can be very MISLEADING, since everyone is trying so hard to find answers, the tendency is to read things into opinion polls that are not even there in the first place.  That is why we MUST rely on VALID MEDICAL RESEARCH in dealing with medical problems and NOT what they majority might think about how to solve them.  Unlike electing public officials, medicine is not an exercise in democracy any more than you would simply poll your neighbors to find out how to fix your car.  - George