November 21, 2007 at 11:56 am

The conventional wisdom is that there is no explanation or cure for GBS. But I came across a significant amount of information that seemed to substantiate Dino’s discovery. A potential side effect of an anti-androgen drug (reduce testosterone) is loss of feeling and function due to demyelination of the nerves. Yet a person with gigantism, a condition caused by a dysfunctional pituitary gland releasing huge amounts of hormones, has myelin sheath that is twice as thick as a normal nerve. In Klinefelter Syndrome, a condition in which a boy’s testicles do not develop normally resulting in reduced testosterone production, one of the implications is an increase risk of autoimmune disorders.

Could this explain why women get autoimmune diseases two to three times more then men? They have only a fraction of the testosterone that men do. I thought that was the answer until I came across research relating to the autoimmune diseases Multiple Scierosis and Rheumatoid Arthritis. During pregnancy, women usually experience less disease activity in both MS and Rheumatoid Arthritis. There isn’t an increase of testosterone during a pregnancy, but there is a dramatic increase of estrogen and progesterone. If you google Barry Arnason,MD (medical advisor for GBS Foundation) you will see that the University of Chicago is studying the effects of pregnancy on MS.

I also came upon a study that stated that women who took vitamin D slashed their risk of MS by 40 percent. Vitamin D is the only vitamin that is also a hormone. Upon further study, I discovered that steroid hormones like testosterone, estrogen and progesterone are all immune response suppressors. Could women get autoimmune diseases more than men because their hormonal levels fluctuate in a much wider range?

The key that seems to connect these steroid hormones and our immune system is a recent discovery called a regulatory T cell or a T-suppressor cell. These cells close down the immune response after it has destroyed invading organisms. The cells are sensitive to high concentrations of circulating hormones and release their own hormone signaling all other participants to cease their attack. What would happen if these regulatory T cells were somehow obstructed?

A study from the University of Washington, published in December of 2005, was initiated to investigate how sex steroids modulate cellular immune function. A group of healthy men were medically (with drugs) castrated to suddenly and drastically reduce their testosterone. The effect was to significantly reduce the percentage of regulatory T cells and increase the percentage of natural killing cells. Is this not a recipe for an autoimmune response? If you review the conditions associated with the onset of GBS (viral or bacterial infection, vaccinations or extreme stress) there seems to be no common thread. Yet all of these conditions can cause a drop in your hormonal level. The summer before Dino and I got sick, we were both under extreme stress. We recently had a blood test and our bioavailable testosterone was very low.

Long term research needs to be done in this area. The GBS Foundation does not function as an advocate of one research over another. They were nice enough to pass on Dino’s work to a neurologist who contacted a endocrinologist who had some very interesting comments. But we never expected them to take the lead on this subject.

Should people be aware of this issue and be able to make their own decision relative to their treatment while the research is being done? To me it was like chicken soup – it might not help but how can it hurt.


June 26, 2007 at 10:53 pm

[QUOTE=peggy80]Thanks for Google video, Very informattive and well presented. Do you know where I can esearch to get more information on GBS and MG (myasthenia gravis}? I have both autoimmunes and another, pernicious anemia.

Hi Peggy, I think the best way to research is to GOOGLE The form of GBS you have and maybe together with the MG, Good luck researching and God Bless


October 5, 2006 at 12:13 am

Hello Kaila,
If a story about CIDP, the longer term, cronic stage of GBS will help you, my story is here in the main forum. You have my permission to print it out and use it. Just click on the SEARCH tab in the blue bar and type in CODYSTANLEY’S CIDP STORY.