Forums

Forums Forums Main Forum Anyone study high dose testosterone and GBS/CIDP?

This topic contains 13 replies, has 0 voices, and was last updated by  jdailey 6 years, 10 months ago.

Viewing 14 posts - 1 through 14 (of 14 total)
  • Author
    Posts
  • #5665

    jdailey
    Member

    Hello everyone… I’ve found something that has changed my life…

    About 10 years ago I was diagnosed with CIDP after months of bouncing between doctors, since then I’ve been given a lot of treatments, but IVIG was the only one I responded to. I was getting 30grams of IVIG once a week at the worst and once a month at the best…

    I’ve experimented on myself with a lot of drugs, and read somewhere about high dose testosterone causing nerves to repair quickly in other disorders. So, being stupid, I tried this myself. But the news was good, within weeks I noticed my symptoms were not re-appearing after my last IVIG infusion. That was NOVEMBER of last year!!

    Long story short, it’s been almost a year since I’ve had my last symptom. I’m “cycling” these drugs on and off, and when I cycle off I start getting symptoms within about 8 weeks of my last injection.

    Taking this a step farther, I tried Human Growth Hormone (hgh), assuming it did the same thing but did not need to be cycled like high dose testosterone. It ALSO worked! And can be run year round and has lots of other positive effects and no side effects.

    I just wanted to share this and see if anyone has ever looked into the regenerative qualities of testosterone and growth hormone and their effects on our nerves. My best educated guess is that these drugs are regrowing my nerves faster than my immune system can damage them. Not sure this is better than IVIG or not, and my insurance company will NOT cover it (its all being done through the underground), I just don’t like the idea of putting other peoples blood products in my body.

    If anyone would like to discuss this, I’d love to see some other opinions. My neurologist said he’d even write a prescription for either of the drugs, but that my insurance company might use it as an excuse to drop me (insurance companies don’t seem to support “experimental” drugs, even if drastically cheaper and more effective) if in the future they stop working and I have to go back to IVIG. Not worth the risk, so I stay underground.

    #51590

    gene
    Member

    hi j & welcome,

    glad to hear t & hgh works for you. my doc tried t patches on me w/o success, but i guess the patch is not nearly the amt a shot gives. also i have gbs [actually sidp] not cidp. since i had no ins at the time, Rx was not an issue. take care. be well.

    gene gbs 8-99
    in numbers there is strength

    #51597

    jdailey
    Member

    Gene, how much were you administered? How old are you? I’m 33 and anything below 250mg a week does nothing for me… Same with GH, anything below 4ui a day does nothing for me.

    #51611

    gene
    Member

    j,

    i’m 65 & i think the patches were 30 mg, not sure. take care. be well.

    gene gbs 8-99
    in numbers there is strength

    #52221

    jdailey
    Member

    Just a bump on this, a lot of research online has shown that high dose test has been used to successfully treat MS. I seriously think a lot of men that have GBS or CIDP should give this a shot. It literally has changed my life with CIDP.

    One $4 shot a week that I can do at home, instead of a 5 hour infusion at the hospital that costs $5,000. Seems like a no-brainer. Hopefully this can help others out there!

    #52262

    annie
    Member

    Notice the short responses, ——————From caring people. Short because they do care. Recently, there has been someone invading the GBS forum. Advertising, asking for $, what not———————————————Having said that, I’m not really up on the lingo of the doses for Gbs or cidp treatment. I imagine the Senior members on this forum think I am being somewhat of a bi—. I’m just saying be careful what you say on this forum.

    #53212

    jdailey
    Member

    OK, so I found a doc to prescribe Testosterone. I’ve now gone a year without an IVIG treatment.

    For men, with GBS or CIDP, that are over age 30 and live in the US. I really, truly believe this is the best treatment of symptoms available! If anyone else is interested in giving this treatment a shot and doesn’t mind needles (you certainly shouldn’t by now), you’re welcome to PM me and I can put you in touch with my doc.

    Not sure what the rules here are? I’m not an advertiser, I’ve dealt with this for 10 long years with the same damned treatment of 5 hour IVIG drips once a month.

    #53245

    gene
    Member

    this is soo interesting. since cidp is active gbs, it appears that the testosterone treats not only the symptoms, but deactivates the bad gbs antibodies. does anyone know anybody who can give us a medical/chemical explanation? many discoveries are found by accident. take care. be well.

    gene gbs 8-99
    in numbers there is strength

    #53478

    L Cala
    Member

    would love more info. and what about for women with cidp?
    Linda

    #53504

    LadyKITUSA
    Member

    I am going to watch this thread with more than just some interest. I had a severe case of GBS and now having female problems that have been on going. I am starting to forget about the GBS and get back into going to the doctors for other problems. The trouble with my body is that it is not producing testosterone and the estrogen is causing problems. So to try and control some of these problems until I can have the big H operation they have been giving me 10 days of testosterone to regulate or stop bleeding. So with that said the last time I took the testosterone I made sure I was more observant and kept track of how I also felt. Attitude, energy come up and the GBS residuals went to a minuium. Now you have me wondering if it is not the GBS getting better slowly it is the testosterone they are giving me that is giving me good days! ??? :confused: ??? Interesting eh?

    #54433

    jdailey
    Member

    For women… test can be dangerous, I don’t recommend it. But then, I really don’t know ****…

    But, I have also used Growth Hormone with the same effects and it is safe for use on women. I believe any anabolic compound (basically steroids) will do the job, as I understand it, all you’re doing is repairing tissue faster than it can be taken down by the immune system. That’s how those bodybuilders grow such huge muscles, they have a super fast recovery from steroids.

    I am not at all a doctor and don’t even pretend to know what I’m talking about. But for me, Testosterone, and Human Growth Hormone, both chemicals produced by large pharma here in the states, have worked wonders for me. I’ve been IVIG free for 1 year now after depending on it for something like 11 years.

    #54440

    [QUOTE=jdailey]Hello everyone… I’ve found something that has changed my life…

    About 10 years ago I was diagnosed with CIDP after months of bouncing between doctors, since then I’ve been given a lot of treatments, but IVIG was the only one I responded to. I was getting 30grams of IVIG once a week at the worst and once a month at the best…

    I’ve experimented on myself with a lot of drugs, and read somewhere about high dose testosterone causing nerves to repair quickly in other disorders. So, being stupid, I tried this myself. But the news was good, within weeks I noticed my symptoms were not re-appearing after my last IVIG infusion. That was NOVEMBER of last year!!

    Long story short, it’s been almost a year since I’ve had my last symptom. I’m “cycling” these drugs on and off, and when I cycle off I start getting symptoms within about 8 weeks of my last injection.

    Taking this a step farther, I tried Human Growth Hormone (hgh), assuming it did the same thing but did not need to be cycled like high dose testosterone. It ALSO worked! And can be run year round and has lots of other positive effects and no side effects.

    I just wanted to share this and see if anyone has ever looked into the regenerative qualities of testosterone and growth hormone and their effects on our nerves. My best educated guess is that these drugs are regrowing my nerves faster than my immune system can damage them. Not sure this is better than IVIG or not, and my insurance company will NOT cover it (its all being done through the underground), I just don’t like the idea of putting other peoples blood products in my body.

    If anyone would like to discuss this, I’d love to see some other opinions. My neurologist said he’d even write a prescription for either of the drugs, but that my insurance company might use it as an excuse to drop me (insurance companies don’t seem to support “experimental” drugs, even if drastically cheaper and more effective) if in the future they stop working and I have to go back to IVIG. Not worth the risk, so I stay underground.[/QUOTE]

    Hi-
    I read about you using human growth hormone and would like to know more about this. I am looking into different treatments to try. I was dx with cidp at age four. At age five started ivigs,worked at first then became immune to it and quite when I was ten. I am 20 now and am researching different types of treatment for cidp. If you could explain more about hgr and how it has improved your symptoms I would really appreciate it.
    Thanks:)
    Jessica

    #54468

    jdailey
    Member

    I can’t really explain why it works… it was just a hunch that if testosterone worked, then maybe hGh would work, since they both increase protein uptake and tissue repair. And the only reason I tried it is ’cause a lifetime on testosterone is exactly that, a lifetime decision, ’cause once you go on long term with no breaks, you pretty much have to stay on (for men at least), ’cause your natural test production will likely never come back.

    hGh, from my understanding, can be started, then stopped a year later with no real lasting side effects. Its downside is cost, it is extremely expensive.

    My dose was 2ui in the morning and 2ui in the afternoon. That added up to about $1000 ever 10 weeks in growth hormone, and that was on the “black market” where things are much cheaper, but more dangerous.

    I finally gave up on that route ’cause of cost and the fact that what I was doing was technically illegal. But for women, out of the two choices of testosterone and growth hormone, I’d think you only have one choice, the growth hormone.

    As far as symptoms, both were the same, absolutely zero symptoms while taking the drugs. With the side benefit of increased energy, increased muscle density, increased “mood”, basically everything felt and worked great. After about 8 weeks of being off the testosterone, my symptoms returned. After about 2 weeks of being off the hGh, my symptoms returned.

    I wish there was an accepted medical reason and accepted medical protocol that insurance would cover to deal with this, but I haven’t found a way to do this through my insurance (and I have great insurance). But in the end this is about the same cost as my IVIG treatments after taking into account deductibles and 10% co-pays and out of pocket yearly maximums (which I always hit while on IVIG).

    #54511

    RAS
    Member

    Please read Dino’s post on this subject. The study he sites suggests progesterone is what works with women.

Viewing 14 posts - 1 through 14 (of 14 total)

You must be logged in to reply to this topic.

  • Centers of Excellence