My Dr called and ask if I wanted to be in FMS study

Discussion in 'Fibromyalgia Main Forum' started by over50, Nov 9, 2005.

  1. over50

    over50 New Member

    they are looking at HGH,to help.
    After years of testing they have found that we are low in Human growth hormones.
    I had to decline because of liver damage.
    But,Im excited they are trying to find the answer for us.
    I live in Oregon.
    Lets hope they find some relief for us,without damaging our organs :)
    Have a beautiful day
    Love,Linda
  2. tandy

    tandy New Member

    That IS good news!!!
    at least our illness is being looked at or studied more~
    It sure does'nt seem so most times.

    Too bad you could'nt take part~ That would be kinda neat!
    I was asked to be in one for a new drug for Fatigue.
    I said yes,..but it has'nt begun yet.
    I think in Jan. 06.

    Take care :)
    Tandy
  3. karatelady52

    karatelady52 New Member

    I just started taking HGH through the FFC. They didn't ask me to but as I was talking to my nurse who is also trying it, she told me all the great things its supposed to do. She said a woman came in who had been taking it for 2 months and looked wonderful --- her skin was clearer and she had a lot less wrinkles. It works from the inside out literally! I've only been on it a week and its supposed to take 3 months so I'll let everyone know how it is working.

    The flyer on it has a lot of good things to say about how it boosts your immune system in every way so we'll see.

    Hey, I'll take the younger look also but I really want to feel better too of course. Its just so expensive........

    I'm on a very small amount to begin with.

    Sandy
  4. abbylee

    abbylee New Member

    If you look up Xyrem you'll find that it's HGH. Maybe that's why a sleep study is needed for fms patients, and why so many are prescribed Xyrem.



    abbylee
  5. karatelady52

    karatelady52 New Member

    Xyrem has HGH in it???

    Are we talking about human growth hormone? Anyway, that's what I'm talking about. Why would Xyrem have it in it?

    Hmmmmmmmmmm............I just got my bottle of Xyrem out -- it has GHB in it which is gamma-hydroxybutyrate (date rate drug).

    The initials were close though :-}

    Sandy
  6. over50

    over50 New Member

    Tandy...Good luck with your study,it should be very interesting.
    Sandy....Oh,good they are starting the testing. Do you have to take shots? It would be wonderful to look better.
    Im not sure but I think I read that it can cause cancer to grow faster.
    Please keep us updated on how its going.
    Do you feel like its working?
    Im excited now.
    Love ya,Linda
  7. elsa

    elsa New Member



    Hi Linda,

    You mean the main stream docs are really fessin' up to low GH in CFS/FM patients? Well, I'll be ding danged!! My, my ... I don't know what to say ... except ... 'BOUT DARN TIME !!! LOL

    Thank you for posting this. I am obviously a big believer in the GH deficiency aspect. Before you know it, these guys are actually gonna say that testosterone in female CFS/FM patients is markedly lower too! Wow ... I better calm down!

    I am sorry you are not a candidate for the study. Maybe there will be adjustments to the protocol soon where you can take GH if your numbers are low.

    I only make about a quarter of the GH a normal person does. It makes sense ... we battle sleep disorders that limit the amt of GH produced. But that's not all ... We don't produce it the hour after exercise like normals do either. How can we not be deficient?

    My testosterone was literally next to nothing. My husband laughs ... talking about my injections ..."Once a night and twice on Saturday"! Sounds like he's talking about bath time or something!

    The hormones are the last phase of my plan. Take six different compounded ones at the moment, but I do feel stronger.

    I ask, if we do not have what's needed to make muscle and we do not have enough of what's needed to repair the muscle we have .... Then how can we NOT be in pain?! It is fairly easy to follow I think.

    Well, I didn't mean to steal this thread. Thank you so much for letting us know about the study. Every time I hear about one starting up, the more pleased I get. I hope all are well this evening ... Thanks for letting me rant!

    Take care,

    Elsa
  8. over50

    over50 New Member

    Elsa.that is awesome,you are taking hormone shots?
    Does it help?
    Are you growing a beard yet? LOL
    Im glad you shared your info,we are in this together.
    Good night.
    Love ya,Linda
  9. swimmer71

    swimmer71 New Member

    Elsa,

    Reading your post, I marvel at the proactive things you are doing to get better.

    What doctor are you seeing that is doing this with you? I can't seem to find one who is interested in doing anything but see me every 4 months after a useless prescription.

    It is a very frustrating battle. I want a doctor who wants to try and experiment and who cares. I admire your battle and would appreciate any advice you can give.

  10. cph13

    cph13 Member

    I was told sometime ago that HUMAN GROWTH HARMONE is good and can work however, isn't there always a however
    It also can GROW thing like cancer if you have the gene. Makes sense....any takers on this thought??????????????
    cph
  11. jfrustrated

    jfrustrated New Member

    Dear over 50

    Just some info on HGH:

    About three years ago, my progressive and informed doctor trialed me on HGH. I have had CFS/FM for about 10 years. I went in every two weeks and received the HGH in liquid form - kept in the fridge - self-injected each day. Three months trial. My HGH levels were low when I started and at a satisfactory level at the end of the three month period. Unfortunately, there was ABSOLUTELY NO CHANGE in my condition or symptoms. The only thing that changed was my bank balance, because it was an expensive trial and no medical refund. Also, I was even more tired because of my fortnightly trip into town to see him. The doctor was both apologetic and confused. He agreed with me that there was no point in continuing the treatment. Apparently, I, and probably some other people with CFS/FM cannot utilize the HGH when it is in the body.

    So Sad, as I was so hopeful that it would help
  12. elsa

    elsa New Member




    It is not going to start a tumor that is not there yet. It can't work with a gene ... People can have a gene for anything that never gets turned on.

    If you have an actively growing tumor ... the two most warned about are brain and prostate. If they are in the acute , growing stages then GH is not recommended.

    I'm sorry about not being able to utilize the GH. My doctor touched on this topic. It is not a good idea to try to treat one hormone at a time, but to bring all of them back into balance together. They work on a continual loop of feedback, so raising one may not have the desired effect as balancing all.

    It is the dysregulation of the hypothalamus-adrenal-pituitary glands, not an individual hormone dysregulation that effects us. Hypothalamus gets wacked then all the rest tumble like dominoes.

    Our plan is to treat many and hopefully they will all be back in balance.

    At this point I have less muscle pain, more clear thinking in the morning and waking more refreshed, more energy and more overall well being. So far in my treatment everything thing is pointing in the positive direction.

    Elsa
  13. karatelady52

    karatelady52 New Member

    To answer your question, yes, its like a pen. You screw on a tip on the end of it that has a tiny needle and you inject it in your leg.

    You don't want to inject in your stomach because it will get lost in the fatty tissue (not that we have that in our stomachs).

    They said you also want to give it to yourself 20 - 30 minutes before breakfast and not at night because at night is when your own body makes its HGH.

    I don't know if the FFC is using HGH in their protocol. LIke I said, my nurse is trying it and as we got to talking about wrinkles, she mentioned it. Then, upon looking at the brochure, I saw all the amazing things its supposed to do for the body internally, I thought I would try it.

    Hey, it may not work but I'm going to give it a shot.

    I've only been on it for a week. I do see a difference from the bio-identical thyroid hormone. I have more eyelashes!!! How about that. They've always been scrawny.

    Sandy
  14. elsa

    elsa New Member


    Sandy, I'm sure loving some of the ancillary benefits of GH too! The FFC does rx it as my sister is on the nordiflex pen for her hormone balance treatment. I never asked her about the subcutaneous stomach skin vs. thigh. Also, I flat out don't remember about the AM dose instead of the evening dose when we supposedly make it ourselves.

    I have read about that in my research .... what do you think. The FFC nurse gave you this run down? Does it make you sleepy at all taken in the morning or can you tell? I can't tell anything after I inject, but I've gotten into the habit of asking that question,LOL.

    I do inject it into my thigh unless I'm way tired ... then it's going into the abdom. ... just easier for me.

    Swimmer, I got lucky for lack of a better term. My PCP is well versed in CFS/FM and wholly belives in it's existance. He is mostly agressive in the viral and sleep areas of our illness , but not too knowledgable about supplement deficiencies or hormone problems.

    At least he told me up front that he didn't know much about those areas in relation to our illnesses ... many times docs won't fess up to that one.

    I also have a natural health doc that helped me sort out the notoriuous nutritional problems we face and helped me with amino acid therapy. I would much rather add depleted neurotransmitters then take an AD to keep what I did had from upregulating ... but I don't battle depression, ...there is a difference I think.

    I did go in search of a expert in endocrine systems and CFS/FM patients. This is the last leg of my original treatment plan. By this point I was fairly certain what I wanted and how I wanted to be treated. I found an integrated doc who in a previous life was a practicing ob/gyn.

    He got interested in preventative medicine, bio-identical hormones and anti-aging. He is now a board certified anti-ageing doctor. I've read up on how that happens ... not that easy, whew!

    Since I am no longer in my twenties (LOL), I knew two things were true for the future ... 1. I was not going to feel like heck after menopause just 'cause someone says it's the natural order of things/getting older, and 2. I was not about to take the same synthetic medication I give MY HORSE monthly to control his stallion tendencies!

    It was the logical step for me to finally find a ob/gyn that is very interested in the endocrine problems CFS/FM patients face and believed in the integrated, bio-id treatment of them.

    Swimmer- I found just about everything I know on this board. I parked in front of the computer and read and studied and educated myself ... then went out and found the doc(s) for me. I reversed things I guess ... decided on what treatment course for the particular CFS/FM subset I was looking at and then found a doctor that best matched my plans. It's hard, time consuming and worth it.

    That's one thing that appeals greatly to me about the FFC's. Everything is under one roof. Had I just started out on my trek, I would seriously be considering them for help.

    I might rub a few staff members the wrong way with my knowledge of things and sometimes I can stun a doctor with my "no, thank you's" to certain treatment options, but in the long run, I do feel in control of my treatment and am pleased with the choices I have made.

    I wish you well ,.... Keep putting one foot in front of the other, you'll find the doctor(s) for you. Or look into the FFC's. You don't have to do the entire process all at once. They do offer a hormone bio-id patient treatment plan for anyone ... not just our illnesses.

    Sandy ... Let me know if you get the chance what you think about am vs pm injections and thigh/stomach sites. If switching is going to utilize the GH better, I'll switch in a New York minute!

    Miss Linda ... you funny girl you! No ... I haven't sprouted a beard yet!! If that lovely imagine does occur, I guess I'll no longer be deficient in testosterone! LOl At this time, I would be mighty upset if aomeone tried to take it away from me!

    I also take T3 for my thyroid, progesterone, GH, cortisol (briefly), DHEA/pregnenolone along with testosterone. All my blood work showed really good numbers in glucose, insulin, (not IGF-1) the estrogens, liver and kidney function and spectacular cholesterol levels. ( I'm bragging I know, but so many other things were off the charts I tend to grab onto what ever good I do have! LOL

    It's all part of a big picture ... treating the multi-layers that is CFS/FM. One step at a time.

    Take care all,

    Elsa




    [This Message was Edited on 11/10/2005]
  15. sleepyinlalaland

    sleepyinlalaland New Member

    or...XYREM, is that GHB is supposed to enable your body to produce its own growth hormones (probably by inducing a deep, restorative sleep).

    I finally found a doctor to prescribe Xyrem for me, and I'll let you know how it works for me.
  16. karatelady52

    karatelady52 New Member

    Actually, I found that information online. Its a site that sells the HGH pen just like ours. So, I called my nurse and told her. The strange thing is the pen didn't come with any of that information. Strange!

    Ok, now I see what Abbylee was saying about the Xyrem. I'm taking Xyrem also so hopefully I'm making some of my own HGH at night.

    Sandy