xyrem in australia

Discussion in 'Fibromyalgia Main Forum' started by heapsreal, Apr 19, 2009.

  1. heapsreal

    heapsreal New Member

    Wondering if any aussies use xyrem or if its even available, and are there any specifics in getting it prescribed etc.
  2. tennisnut

    tennisnut New Member

    what is xyrem and what does it do? Don't know where in Oz you are, but I have come to plenty of dead-ends in the medical profession - so don't go there any more.
  3. heapsreal

    heapsreal New Member

    38 male in brisbane, xyrem is GHB which is a prescription sleep medication that apparently gives you deep stage 4 sleep and people who have used it apparently sleep better with less aches and pains and more energetic because they are now getting the restorative sleep that they have been missing.

    I have a pretty good doc who is up to date on cfs, I have good results from antivirals from him, i no longer 'crash' like i use to. But of late have had increasing aches and pains, knots in muscles etc. I have read that xyrem reduces pain in fibro.

    I see my doc tomorrow so will find out his take on it, 2-3month waiting period to see my doc so will have to try and remember all the questions i have built up over the last few months, lol.

    Tennisnut, i take it you dont see any doc or are on any meds, i dont know where i would be without sleeping meds etc.
  4. hensue

    hensue New Member

    with antiviral meds? Can you tell me about it and how long and what you have been taking. Do you sleep?
  5. heapsreal

    heapsreal New Member

    2002 had ebv and chickenpox and never felt well since, finally found a good doc, had a lymphocyte subset test done, these can indicate ongoing infections and possibly ebv reactivating, so in november 2008 started taking famvir 250mg morn and night. At first notice little then relised i hadnt crashed, i would usually crash twice a month atleast and this just kept going, had a blood test about 3 months after starting antivirals and it showed my lymphocytes going down. Iam sleeping ok at moment but with sleep meds, 20years of shift work probably has a part in it also. Also famvir isnt covered on PBS so it costs me $200 a month, that is for 500mg strength tablets which i cut in half, that is the most economical as the 250mg strength is pticed alot higher.
  6. tennisnut

    tennisnut New Member

    My journey with ME has been over 5 year, probably not a lot compared to some of the poor suffering souls on these boards. I'm very sorry for you to be struggling so at only 38 years of age - my children are older and I would not like them to be so afflicted - most probably shift work has been very bad for you, as my excessive sporting zeal was for me.

    Over 5 years, I have been at the mercy of many doctors and found all of them wanting, either because they have no answers and are consequently blaming and arrogant or simply don't understand anything that does not show up in blood tests.

    Now, I have found a Naturopath who is caring and capable and I therefore trust. I am taking the type of supplement that Roger and Rafa would be taking after 4 hour games (it's designed for elite athelites - not sickies, but it works) and am finally able to say - "I think I am feeling better" - but not too loudly.

    LIttle by little - I am trying to be drug free for at least 6 months, but do need to sleep better and that would be the only exception. Good luck with your search.
    Doesn't it really p** you off, how much everthing costs? Money that should be spent on fun.

  7. heapsreal

    heapsreal New Member

    will the supplement improve my tennis to rafa and rogers level??lol,
    Can i ask what it is, guessing ribose.
    I gree with what you are saying about docs, i think they get sick of us almost as much as we are with cfs.
    The cost of being sick is a bugger and alot of the times meds are cheaper then supps.
  8. tennisnut

    tennisnut New Member

    Don't know if we are supposed to plug products, but the one I have been on is Bounce Back and am now starting Ambrotose. Any small improvement is a shining light. There are other companies with similar products - all available at a cost. I am quite happy to try this line, because in the past "after effects" of the drugs I have taken have given me very nasty problems, which then need to be overcome. Cheers and good luck. TN