Discussion in 'Fibromyalgia Main Forum' started by confetti11, Apr 29, 2007.

  1. confetti11

    confetti11 Member

    Does anyone know how this factors into our overall health/CFS & FM?Thanks!
    [This Message was Edited on 05/01/2007]
  2. confetti11

    confetti11 Member

  3. roge

    roge Member

    well, it factors in as human growth hormone (IGF-1 is best measure of this) is often low in people with FM and ME/CFS.
    search under hgh deficiency and many symptoms we all have are listed. certainly not the cause of our disease (a symptom) but i do feel if is treated, it can reduce symptoms. problem is hgh is expensive.

    Some with ME/CFS cant tolerate normal doses as it fatigues them even more as it helps the body repair itself and this takes energy I gather , so figure the body needs to be at a certain level of health for hgh to be even considered, of course everyone is different in how they will respond to hgh.

    My IGF-1 is indeed low (15% below the low cut off) based on bloodwork and I am currently in the process of trying to find a doctor to treat with me it as it is not looking promising that the Endocrinologist will and not a real surpirse here. Not sure what decision I will make if my insurance doesnt cover it.

  4. confetti11

    confetti11 Member

    Thank you roge.

    Does anyone know what it means if you're sick and it isn't low? I've been told it's a good sign that my overall system is strong. No idea. ???
  5. Slayadragon

    Slayadragon New Member

    Hi Confetti,

    Several years ago, my IGF-1 was borderline low. Dr. Guyer prescribed some HGH (.2 mg) to see if it would help.

    I found that it made me totally exhausted. I later read that Dr. Cheney's patients had the same problem.

    Dr. Guyer has been telling me since I started the antiviral that HGH would be helpful in allowing me to reach a full recovery once I was done with the drug. His argument that the virus has caused a lot of damage in my body over the years that could use help in being repaired made sense to me.

    After about three months on the Famvir, my body kind of collapsed and I could barely take any at all. I figured I needed something to get my system strength back and decided to look into Traditional Chinese Medicine. That helped somewhat.

    However, I was still struggling at my last doctor's appointment. After a few seconds' thought, Dr. Guyer suggested that HGH would help my body to be strong enough to tolerate more medicine and also might improve my sleep.

    Within three days of starting HGH, I was able to move from barely tolerating 500 mg of Famvir to being fine with 1000 mg. I think it will be as important as the drug itself in allowing me to improve.

    i don't know what my IGF-1 level is at present. It was normal in early January, but it may have decreased at the same time that I crashed. (ask2266 reported on my Famvir status report thread this week that her HGH level had gone down since she had started Famvir and that she was starting replacement.)

    i'm not sure why I can tolerate the HGH now when I could not before. It's possible that my body really needs it since it's not producing enough of its own.

    it also could be that my body is stronger in general. Maybe the reduced viral load has helped. Also, my adrenals have gotten a lot stronger in the past years, and I once read that those people with weak adrenals (which mine were the first time I tried HGH) have a hard time with HGH.

    Is Dr. Guyer suggesting that HGH might be useful for you at this moment?

    I currently am using the HGH I got previously, but will need to order some more soon. Hopefully insurance will pay. Otherwise I think the cost for the dose that I'm taking will be something like $300-400 per month.

    Best, Lisa
  6. confetti11

    confetti11 Member

    No, he's not suggesting HGH for me because my number is pretty strong, he said. I just don't really understand what it means about overall health because it seemed to mean something to him as far as overall resilience. Does that make sense? I'm trying to understand better what it really indicates.
  7. Slayadragon

    Slayadragon New Member

    I think it's one measure of our health, similar to the adrenals.

    Just because it's normal doesn't necessarily mean that a person is in great shape, though.

    And some people here (I'm thinking foxglove in particular) have very low IGF-1 levels but nonetheless are able to remain reasonably active.

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