Could Testosterone be the key to curing GBS?
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November 19, 2007 at 2:00 pm
A new discovery regarding GBS has had a profound effect on my life. I was diagnosed with GBS on September 19, 2002 and became totally paralyzed within days. Seven months of hospitalization would be required to remove me from the respirator and regain enough strength so that I could go home. My slow recuperation proceeded with eight months of therapy and continues through the present day.
The Rehab Institute of Chicago, where I was hospitalized and received outpatient therapy, asked me if I would meet with recovering GBS patients. At one of these meetings I was introduced to Dino Jerkovich. Dino, an analytical chemist, was doing research for a major pharmaceutical company before he became sick. In the spring of 2006, Dino called to tell me about a study being conducted at UCLA indicating that testosterone stimulated the growth of the myelin sheath in men. After numerous phone calls, I finally reached the department doing the research and was told that they were very encouraged. If this was true, testosterone could be the cure for GBS.
A few days later while I was recounting the amazing news, a family member reminded me that I had received a shot of testosterone in the hospital. After checking the medical records, I confirmed that on January 8, 2003 I was given a 50mg dose of testosterone. In that I was only 118 pounds, a doctor had suggested the shot to help rebuild my strength. Over the next two to three weeks, my arms and legs began to move. I could lift one of my fingers. I passed the swallow test. I experienced an incredible surge of recovery but then the gains would slow to a halt. At the time, I thought early recovery must be the easy recovery. But after Dino’s call I realized that the shot of testosterone lasted in my system for exactly the same period of time as my incredible surge of recovery
I tried to share this information with the medical community but I ran straight into a brick wall. When I approached neurologists, they said that endocrinologists deal with hormones. But when I approached endocrinologists they said that GBS was a neurological disease and I needed to contact a neurologist. There was a gap in the medical community and for a year I was unsuccessful trying to bridge that gap. Finally through a referral from my brother-in-law, I met with a doctor who had the courage to think beyond conventional or convenient wisdom. She had the guts to try to bridge the gap. I began a daily regiment of 5mg testosterone cream and after years of status quo, I began to recover again. In two months the doctor referred to the recovery as subjectively verifiable. After five months an EMG confirmed nerve recovery.
Please read the attached article by Dino and feel free to contact Dino or me at shea5810@comcast.net. Bob
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November 19, 2007 at 2:21 pm
that is rather interesting. I am glad you have had a good experience with it. But how would this effect women? Is there any info about that?
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November 19, 2007 at 3:08 pm
If you read the attached article, the study at University of Milan showed that Progesterone was also instrumental in building myelin sheat in lab animals. The only experience that we can testify to has been in male (Bob) patient. Women also have testosterone but in smaller amounts, however, progesterone could be tried on women to see what happens. What would be the downside?
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November 19, 2007 at 4:26 pm
I ask because I spend several days out of the month miserable with residuals because of female hormones. I had contacted Dr. Parry about this and he confirmedthat female hormones (and hormones of any kind) can and do cause residuals to flare up. The chance at a better and faster recovery sounds wonderful, I am sure to all of us, but at what cost? In the long run, how would this treatment effect our bodies? Would the extra progesterone and/or testosterone cause negative effects? Would the progesterone be similar to hormone replacement therapy? Don’t get me wrong, this is very interesting and I don’t want you to think I am belittling your work. I will read through the attached file as well as wait for your answers here.
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November 19, 2007 at 4:49 pm
I have been taking a testosterone gel for seven months with no ill effects. You should get a blood test before you begin. This is my second exposure to testosterone relative to my GBS and I have seen results both times.
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November 19, 2007 at 10:43 pm
I’m trying to figure this one out without coming to the wrong conclusion ….
RAS (who is Bob Shea) was introducted to Dino [B]Jerkovich[/B], who in turn wrote the paper on Bobs post.
Dino, who is not Dino [B]Jerkovich[/B] – or is he? has posted a thread to ask a question about Dino [B]J’s[/B] paper.
Both Dino [B]Jerkovich[/B] AND Dino – or is he? use the term ‘et al’ (meaning: and others) in their writings only a few days apart – which hasnt hapened on the forum for I dont know how long.
Dino Jerkovich had GBS in 2003 and Dino – or is he? has been recovering for 4 years.
Dino and RAS/Bob both joined the forum in Nov 2007.However …..
RAS/Bob, you were diagnosed in Sept. 2003 ………
Is there a point to this? I’m just not sure, Im trying to understand it all myself :p .
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November 20, 2007 at 3:01 am
Hello, I have been down that road with the gel with no results. I started doing 300mg shots monthly and it helped at first now it seams to be going down hill. My testosterone was low in the first place so we tried this. It looks IMO it depends on the individual but I am no doctor. Take care and I hope this works for you.
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November 20, 2007 at 8:19 am
I got GBS in September of 2002. Dino got GBS in September of 2003. I met Dino in August of 2004 when RIC asked me to talk with people who were being treated for GBS. That’s our timeline.
If there has been axon damage, testosterone will not help with that recovery. As Dino’s article explained, the testosterone stimulates the growth of the Myelin sheath. What was your doctor’s thoughts on giving you testosterone?
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November 20, 2007 at 8:43 am
It is something we have never tried. My condition goes up and down throughout the year. Get strong then get really weak and this has done this since my GBS in 99. It makes it rough on me but I grin and just keep plugging away.
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November 20, 2007 at 1:41 pm
[QUOTE=ali]I’m trying to figure this one out without coming to the wrong conclusion ….
RAS (who is Bob Shea) was introducted to Dino [B]Jerkovich[/B], who in turn wrote the paper on Bobs post.
Dino, who is not Dino [B]Jerkovich[/B] – or is he? has posted a thread to ask a question about Dino [B]J’s[/B] paper.
Both Dino [B]Jerkovich[/B] AND Dino – or is he? use the term ‘et al’ (meaning: and others) in their writings only a few days apart – which hasnt hapened on the forum for I dont know how long.
Dino Jerkovich had GBS in 2003 and Dino – or is he? has been recovering for 4 years.
Dino and RAS/Bob both joined the forum in Nov 2007.However …..
RAS/Bob, you were diagnosed in Sept. 2003 ………
Is there a point to this? I’m just not sure, Im trying to understand it all myself :p .[/QUOTE]
I was a little confused too considering the join dates and other things you noticed.
If it helps someone I guess it is a good thing. I prefer not to feel misled.
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November 20, 2007 at 2:47 pm
I am sorry if anyone has been misled. My name is Bob (Robert Allen Shea or RAS). There is only one Dino and that is my friend who wrote the attached article about testosterone and GBS – see my original post. I by chance received a 50mg shot of testosterone when I was in the hospital and experienced amazing recovery. Based upon Dino’s research of my experience, I was prescribed a testosterone gel by a neurologist and a endocrinologist. Once again I am encountering recovery. There is much more to this story but we wanted to share what is happenning with other gbs people.
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November 20, 2007 at 7:12 pm
Bob and Dino,
I think that if there is anything that could be of help to GBS patients its definitely worth telling others about.
The most important thing to remember is that the Foundation is here to help and to try and make a difference where they can – and they have absolutely done that in many ways. Have you contacted the Foundation to find out what you can do, or speak to them and find out if research with testosterone has been done yet, (or who you would contact to try and have more research done on this.) I am sure that many of the doctors on the medical advisory board would be more than willing to discuss the paper with you if you feel that this is a benefit to GBS patients, and they in turn feel that this is a viable option. One suggestion is to maybe you could forward your article to the Foundation with an explanation and then ask them to contact you, or alternatively, contact them a couple of weeks later to discuss how much further you could take this. -
November 20, 2007 at 8:00 pm
Alison,
We originally went to the GBS Foundation and asked them to put the article in the quarterly newsletter where the GBS patients may read it and then consult with their physicians. However, the GBD Foundation refused after discussing it with some doctors on advisory board. As I state in the article, the doctors tend to dismiss our experience and the animal studies simply because testosterone is a contolled drug (C-III) and its use to treat GBS would be “off-label”. As I state in the article (attachment to Bob’s post) I have called on GBS Foundation to sponsor a clinical trial on GBS volunteers. That would be the most proper way to find out if Bob’s experience could be reproduced in others. Perhaps they would consider it if enough people with GBS demanded that something be done.
Dino -
November 20, 2007 at 10:56 pm
Dino,
Having worked in a research department for a pharma. company, you should be aware that not just any paper can be published for the public. The Foundation has a very high standard to maintain, and discussing it with their medical board is completely the right thing to have done. If you are upset with the Foundation for refusing to pubish your article, you honestly cannot do so justifiably, they have so much to protect, foremost people, and cannot just publish everything that is sent to them – you do understand that dont you?
One thing you also are aware of I’m sure, is that IVIg is ‘Off label’ too, as well as Neurontin, Provigil, Cymbalta – all of which help treat GBS/CIDP Patients, so I’m not sure that testosterone being off label is one of the REAL concerns that doctors have.
Please understand that there are so many claims in the past that have been ‘[I]proven[/I]’ to help GBS (and I’m not saying that is your claim), so if you come up with some resistance, which might not be the right word to use, it is understandable. The doctors on the medical advisory board are some of the best out there when it comes to GBS and CIDP, I have seen some of them speak, and I truly dont believe that they dismiss claims frivolously.
It may seem that I am being argumentative, but truly I am not in the least. My biggest passion is to try and help GBS/CIDP patients, and I would back almost anything (yes there are limits 😉 ) to help them.
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November 21, 2007 at 1:32 am
Hi RAS, Dino,
I’ve just caught on to your topic (by way of the general discussion list), and find this interesting. I have spent the past 2 years taking an in depth look at cidp, and to some extent, gbs. I wonder, when I have a little more time, would you mind if I played the devil’s advocate? Tonite, I took a quick look around and found this topic has been under scrutiny for quite some time with interesting results – both pro and con. My mission is not to prove or disprove, but to better understand the hows and whys of our illnesses. An open discussion of the benefits and/or potential for poor outcomes can help answer some questions that come to mind regarding testosterone.
I think it’s fabulous that you are working towards finding better treatments – and I agree – after initial treatment, patients sometimes have few options with disapointing results. I am really happy this treatment is working for you, but as we have all discovered – each of us is different. I don’t want to be a doubting Thomas, but with so many variations of gbs/cidp, it is difficult to understand how a single hormone could be effective over such a broad spectrum.
A little about me – I am not a doctor, or in medicine at all. I am a caretaker to a daughter w/cidp, and will be looking for answers to these mysteries for the rest of my natural life – and probably beyond. I’ve come up with a few of my own theories, based in part on research, part through our personal experiences.
I am pretty busy with work atm, and am not on the forums as much as I’d like, so it may take me a while to get back with research and questions on testosterone. I hope you’ll join me in a discussion of the potential risks/benefits.
Best wishes to you both for continuing success,
cd -
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.
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October 11, 2010 at 11:29 am
[FONT=”Microsoft Sans Serif”]~ fantastic work and thank you for sharing the information with us all !!
i think i may put dino’s article on my website for information purposes–
this is, in my singular opinion, exactly at least one of the functions that this kind of forum should be used for… cheers gentlemen !! incidentally, i take testosterone via a prescription cream…
[B]not misled at all,[/B]
alicep.s. i am sorry that the medical community has been resistant– i can only imagine that, once again, ego and elitism has driven the decision here.. my thoughts are as follows: put the information out there and include a caveat that it is not “medically proven” nor has it been through the [I]political[/I] rigors of the fda– it could simply exist in another category of information available to folks– and perhaps one day the information will inspire further research that will lead to fda and physician approval and worthiness. instead, they prefer to squash the observations at the cost of potentially helping others… doesn’t surprise me at all…[/FONT]
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Could Testosterone be the key to curing GBS?
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November 19, 2007 at 1:49 pm
A new discovery regarding GBS has had a profound effect on my life. I was diagnosed with GBS on September 19, 2002 and became totally paralyzed within days. Seven months of hospitalization would be required to remove me from the respirator and regain enough strength so that I could go home. My slow recuperation proceeded with eight months of therapy and continues through the present day.
The Rehab Institute of Chicago, where I was hospitalized and received outpatient therapy, asked me if I would meet with recovering GBS patients. At one of these meetings I was introduced to Dino Jerkovich. Dino, an analytical chemist, was doing research for a major pharmaceutical company before he became sick. In the spring of 2006, Dino called to tell me about a study being conducted at UCLA indicating that testosterone stimulated the growth of the myelin sheath in men. After numerous phone calls, I finally reached the department doing the research and was told that they were very encouraged. If this was true, testosterone could be the cure for GBS.
A few days later while I was recounting the amazing news, a family member reminded me that I had received a shot of testosterone in the hospital. After checking the medical records, I confirmed that on January 8, 2003 I was given a 50mg dose of testosterone. In that I was only 118 pounds, a doctor had suggested the shot to help rebuild my strength. Over the next two to three weeks, my arms and legs began to move. I could lift one of my fingers. I passed the swallow test. I experienced an incredible surge of recovery but then the gains would slow to a halt. At the time, I thought early recovery must be the easy recovery. But after Dino’s call I realized that the shot of testosterone lasted in my system for exactly the same period of time as my incredible surge of recovery
I tried to share this information with the medical community but I ran straight into a brick wall. When I approached neurologists, they said that endocrinologists deal with hormones. But when I approached endocrinologists they said that GBS was a neurological disease and I needed to contact a neurologist. There was a gap in the medical community and for a year I was unsuccessful trying to bridge that gap. Finally through a referral from my brother-in-law, I met with a doctor who had the courage to think beyond conventional or convenient wisdom. She had the guts to try to bridge the gap. I began a daily regiment of 5mg testosterone cream and after years of status quo, I began to recover again. In two months the doctor referred to the recovery as subjectively verifiable. After five months an EMG confirmed nerve recovery.
Please read the attached article by Dino and feel free to contact Dino or me at shea5810@comcast.net. Bob
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November 24, 2007 at 11:54 pm
I highly, highly, highly recommend it! I’ve had recurring gbs (CIDP) for over a decade, testosterone treatment has absolutely changed my life.
See my post from earlier this year…
[url]http://www.gbs-cidp.org/forums/showthread.php?t=3214[/url]
And the political BS surrounding this amazing compound is going to stop almost any doctor from prescribing it. I went into the bodybuilding underground to get it (I’m not a bodybuilder by any means). I now have a contact with an office in Florida that will prescribe and mail you testosterone and everything else needed. If you want a referal, I’d be more than happy to send you their way. It’s legal, just expensive. But if you’re anything like me, you’ll see a difference within weeks… <--- not sure I'm allowed to do that? I'm not affiliated...
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