Would like opinions/thoughts on hGH and Xyrem

Discussion in 'Fibromyalgia Main Forum' started by KingNeptune11, Apr 20, 2007.

  1. KingNeptune11

    KingNeptune11 New Member

    I have been doing some research on hGH and GHB(Xyrem) for the treatment of CFS and Fibro for the past 2 years......off and on.........I am in the opinion that hGH therapy may be one of the best treatments for most Auto-immune diseases, including AIDS, which is one of the approved conditions........From the hundreds of hours of information that I have poured through, it just makes sense that hGH can stimulate/heal the HPA axis, among other things in your body.......depending on how severe your condition........

    Of course, I am in the group of people who believe that most of us are infected with a "genetically engineered" virus/mycoplasm that was developed for "germ warfare" by our military..........Nonetheless, it just seems from trial and error over the past 10 years and the research I have done, that it may be best to attack this from strengthening the immune system first........Then trying to use the anti-biotics and other treatments to kill the pathogens......As many of us are unable to withstand the normal medications........

    I realize that currently, with Major League Baseball and other sports cracking down on steroids, it has created a "witch hunt" on steroids and hGH.......But I am talking about "medicinal doses" of hGH (1-4 IU's) per day, not the anabolic levels of (8-20) that many bodybuilders and athletes are taking to increase performance.......

    I would really enjoy reading other opinions on this board who have looked into this or have experience with hGH.......I am also interested in the positive findings that I am reading about Xyrem(GHB), which helps to normalize stage 3-4 sleep and promote growth hormone in your body while you sleep........Has anyone else looked into this or read similar research????? Thanks in advance.......
  2. s--raquel

    s--raquel New Member

    I was just diagnosed with narcolepsy this week...while looking up info on that, I came across ALOT of praise on xyrem...I was glad to see it helps with fibro and cfs as well! I hope you get some replys...Im curious to see how it has worked for cfs/fibro symptoms.....
  3. KingNeptune11

    KingNeptune11 New Member

    What are your major symptoms with narcolepsy??? I have read that Xyrem can be very effective in treating your condition........although the cost is very high........somewhere around 5 hundred a month??? Is this true and is your doctor open to this medication??? Just curious to see how difficult it is to acquire this medication.......Hard to believe you could buy GHB from a health food store back in the early 90's........Never ceases to amaze me how the government continues to take away effective medications that can actually help people.......And tobacco and alcohol continues to kill more people than all of the "controlled substances" combined........Politics at its finest......LOL
  4. Slayadragon

    Slayadragon New Member

    Several years ago, Dr. Guyer tested my IGF-1 level. It came out pretty low (just under normal), and he recommended human growth hormone.

    He prescribed Genotropin MiniQuick, .2 mg per day. (I think this is 2/3 iu.) My insurance paid for a three months' supply.

    I tried it for a short while but found that it made me feel really exhausted, in bed all day.

    Soon after, I read an article by Dr. Paul Cheney stating that he thought it could be really helpful for CFS, but that his patients could only tolerate extremely small amounts (like 1/10 iu, 1-2 x per week.....something like that).

    I tried using smaller amounts than 2/3 of an iu but kept feeling tired. After a while I gave up.

    Last year, I badly sprained my ankle. After a couple of weeks, it had healed hardly at all and I still couldn't walk. I decided to see if I could get improvements with the human growth hormone, and after two days it was almost healed. (I took .1 mg for about a week.)

    When I first went on Famvir, my doctor said that he thought that the hgh would be useful after I was done with the drug. All those viruses had been hard on the structure of my body and the hgh would help repair it, he said.

    At a later appointment, I commented that I was unable to take his recommended dose of Famvir because it was very hard on my body and also that I was unable to get any sleep. After a bit of thought, he suggested that I start taking the hgh again. My IGF-1 was normal, but he said that small amounts of hgh are helpful for people under physical stress.

    I started with .1 mg. Within two days, I was able to move up from barely tolerating 500 mg some of the time (with horrible sleep) to doing almost perfectly fine on 1000 mg all of the time. My sleep got quite a bit better as well.

    After about a week, I increased the hgh dose to .2 mg. This has been even better.

    The perplexing thing is that in the past, .1 mg of hgh was enough to make me unable to do anything. Now I can take .2 mg plus the Famvir and still be relatively active. It's the first sign that I've had that the Famvir has actually helped me (although I don't know whether to give it the credit).

    My belief about hgh is that it funnels energy into repair mechanism. This is important, since CFS sufferers' bodies tend to be run down. (Dr. Cheney has noted holes in many patients' heart, for instance. Dr. Guyer thinks these are caused by viruses, but I think that's just a guess.)

    However, if you've got limited energy, then channeling a lot into repair means that you don't have anything left to move around. It's conceivable that spending, say, one week a month asleep in bed might be "worth it" in terms of feeling better in general (short-term or long-term), but most CFS patients don't seem to think that way.

    The only person on the board who I've noted using human growth hormone is foxglove9922. She tested quite low in hgh and seems to be pretty active (as CFS sufferers go) now that she's on it. She's planning a Valcyte trial soon.

    I've thus far mostly heard about xyrem from fibro sufferers (rather than cfs). I think there was one CFS sufferer who was using it (and who was on an antiviral), but I can't remember who that was.

    frankie78 is planning to take xyrem soon. You can read about that in a post she wrote about getting off Klonopin. She is on Valcyte too, and her doctor is hoping the Xyrem will help her with sleep. (Sleep tends to be a big problem for antiviral users.) Perhaps when she learns more about the drug and starts taking it, she can share info with you.

    I think the cost of the hgh I'm taking would be about $400 per month. I don't know if my insurance would pay for it now (since some people use it "recreationally"), and so I may have to pay for it myself. At this point it would be worth it, though.

    If you like, please let me know on my Famvir Status Report thread about the kinds of tests and treatments Dr, Guyer used for you. It would be interesting to compare.

    Best, Lisa

    [This Message was Edited on 04/21/2007]
  5. s--raquel

    s--raquel New Member

    Kingneptune11, feel free to skip on down to numbered symptoms of narcolepsy!!!I am apparently still really pissed about not being diagnosed earlier...(2 sleep studies,by 2 different sleep specialists!)Four years of UGGGGGG!!Guess I needed to vent more than I realized!!!


    My major symptom is excessive daytime sleepiness...can sleep 24/7 sometimes and still exhausted! This happens with cf sometimes so I have been treating sleepiness with stimulants...but sometimes I still cant sit still too long w/o becoming extremely tired(and I take pretty large doses,I think? 54mg concerta 2 xs day and 80mg methelphenadate(SP?) daily.) Then my daughter noticed my legs and arms twitching when she would sleep with me...had 1st sleep study...periodic leg movement(not restless leg)these are involuntary movements of your limbs while sleeping...I had over 100 'jerks' within 1st hour! So I was put on requip...but also found out in the process that I had almost NO IRON in my blood!! Had to have a port put in and get iron transfusions...blood dr told me iron and b12 deficiency can cause periodic leg movement...got iron up and got off repuip. But my sleepiness continued and I started having "night terrors"...I had these in my teens and 20's...the are awful!! SOOOOO...My psychiatrist wanted to do another sleep study...I was extremely depressed and memory was going...After 2nd sleep study...MY PHYCIATRIST...not sleep dr!diagnosed me!!!Sleep study showed...(he also looked at my 1st one and found the exact same thing!!!)

    SLEEP STUDY RESULTS....
    1. I went to sleep almost immediately
    2. Started dreaming immediately
    3. ALMOST NEVER went to sleep stages past 2...this is apparently a big deal since this is when your body heals itself...when you produce growth hormone?


    My phyc is recommending xyrem...dont know about insurance yet?!?! WOW...500.00 a month? Absolutely insane!!! I totally agree with you on tobacco and alcohol...I've watched both destroy so many people in my family alone!!!
    Same with marijuana...I dont use...always made me WAYYY tooo paranoid the few times I tried as a teen!...but I know alot of people that seem to benefit from it on a medical level...but thats a whole other story!! Sorry this was way too long!!!
    [This Message was Edited on 04/21/2007]
  6. s--raquel

    s--raquel New Member

  7. deliarose

    deliarose New Member

    I tried it. Had a horrible experience. (check my posts as I will probl. not return to this thread)

    2 docs who I saw afterwards shook their heads over the fact that it was Rx'd to me.

    Not that stage 3 &4 sleep isn't great, but the drug has an unknown mechanism. That makes me nervous.

    Just my 2 cents.
  8. Daisys

    Daisys Member

    I've been getting good sleep on xyrem, and have benefited from it. I'd really hate to go back to the exhausted fog I was continually in before.

    My hair has gotten darker than when I first started taking the xyrem, so I'm convinced I'm getting a good amount of HGH naturally. I wake up rested, and without the morning stiffness and malaise I used to fight all morning to shake.

    It doesn't work for every one. But I think it's worth trying. My insurance covers it--for alpha intrusion sleep disorder of FM. I think we pay about $75 a month for the copay.

    It hasn't cured me. (I'm being tested for Lyme--my MD says I should be well by now, so there's something else going on). But my quality of life is much better than before.
  9. KingNeptune11

    KingNeptune11 New Member

    Feel free to vent, that is why we are here and it helps to get things off your chest.......Believe me, I am still upset that my "doctors" told me that I was just depressed for 3 years, before I finally figured out I had CFS......on my own.......I have lost alot of respect for doctors over the years, and most people do when they are put "through the system".......Its definitely not like "House", which is one of my favorite shows.......LOL I guess I just want to believe that their are doctors out there who can actually solve a problem......HaHa

    Anyhooo........Sounds like you have been through the ringer with your conditions.......Your sleep symptoms are horrible, I do feel for you........I used trazadone for a few years when I was really sick, but now I am able to get by with .5mg of Klonopin........I have read that some people dont handle Xyrem very well, but I think alot of that could be the "mixture" of ingredients that are added to the GHB to make it a medication........but some people I am sure cant handle the GHB either.......

    Its amazing that you could buy this at health food stores back in the early 90's and now its illegal, because kids were using it as a date rape drug.......I dont believe that is the reason why it was taken off the market, but that is a whole other topic about our government......The same goes for L-tryptophan, ephedrine and other products......but I digress.......

    I have considered using the Xyrem, mainly to improve healing during sleep and to increase my growth hormone production......From what I have read, its only sold by 1 company and you have to jump through hoops to get the medication and it is expensive........But, it is approved for Narcolepsy, so you should have no problems getting the medication and hopefully your insurance will cover most of it......There is financial assistance for those who need it and dont have insurance though........I have had a few patients do very well on Xyrem (I am a chiropractor), so I hope you respond as well as they did........everyone is different........If you are not sleeping well, you are just not able to heal or even improve for that matter.......Keep us updated on your progress, I am going to try to "qualify" for a trial myself........
  10. ritatheresa

    ritatheresa New Member

    I've also tried Xyrem, my sleep study shows no stage 3 or 4 sleep, I was very hopeful when trying it.

    Unfortunately, it brought on the worst depression, anxiety I have ever experienced in my life. It really scared me. I experienced what I would call depersonalization,totally felt like I was out of my body.

    I think it's helped alot of people, I've heard many people experience similiar symptoms as mine.

    Take care, Ritatheresa
  11. Ginner

    Ginner New Member

    Can my regular, PCP, order HGH from my rx?
    Is HGH what Suzanne Summers talks about and was questioned about?
  12. victoria

    victoria New Member

    There was a poster here some years ago who said taking medicinal doses of HGH cured her, at least she was in remission for a couple of years when she came back and posted I believe.

    Her posts are no longer here tho. If anybody remembers Lakediver, it was her. She went to some doctor in Atlanta, but don't remember who it was. I believe that was all she did actually... altho I don't totally trust my memory.

    But I have also read posts by others who it did not help at all... one was a person who later found she had Lyme. So whether it helps or not may just depend on WHY one has CF/FM.

    all the best,
    Victoria





    [This Message was Edited on 04/27/2007]