I was just reading about this and i saw a post on a message board from a girl who said that xyrem completely cured her CFS/FMS. Ive heard about this drug before and thought it was only for pain associated with fibromyalgia.
Here’s a link to the post
http://www.co-cure.org/wwwboard/messages/27230.html
This drug is a metabolite of the (date rape drug?) (GHB). Doctors are currently perscribing it for problems like narcolepsy and pain management. It is not the same thing as GHB, but you might mave a problem getting doctors to perscribe this to you if you just wanted to try it out.
On my bottles of Xyrem and on rxlist.com, it says:
Xyrem(TM) (sodium oxybate GHB) oral solution. Yep, it’s very dangerous, but given by a doctor who has developed a good doctor-patient relationship, folks who don’t drink and are having extreme difficulty with getting to sleep, staying asleep, and generally getting restorative sleep, e.g. why there’s “REM” in its name, might find it worth a try (if one has good drug insurance).
Unfortunately for me, the instuctions for taking the first dose in bed and having to wake again in four hours later to take the next dose seemed totally counter-intuitive, so I gave it up.
There is no questrion in my mind that without restorative sleep, Fibro and/or CFS,Lyme or any other disease is only going to lower our immune systems and increase our pain.
I can also add that the first time I took Restoril 30mg, I was sure my FMS and CFS were sompletely cured. However, I then was left with trying to solve my pain problems – which I happily did.
(Gosh, I need to update my own website!
Thank you for allowing me to comment.
Hugs, Marilyn K
http://web.tampabay.rr.com/lymecfs/
Thanks alot for the comment. Sleep is so important. I have to take klonoipin and benadryl every night to make me fall a sleep. Other wise i would be up for days. I also found out that if i drink alcohol, i cannot fall asleep no matter how many sleeping pills i take. I dont know what it is but, alsohol has a really negative effect on me. I feel the effects of it for at least a couple weeks after i drink. I would like to try xyrem, just to give it a shot. I think anything would be worth a try at least once, But i know that there is no way that my current doctor would let me try it.
take care
Thinking back……I started on Xyrem in 2007, I knew sleep was so important, and had
a sleep study in 2003 at which time I was given a sleep pap apparatus. It did stop my snoring, and that was about all it did for me, After my first night taking Xyrem I woke refreshed for the very first time since before 1995. I was able to go back to work part time for 6 months. I stopped due to having a up coming surgery and never began again, I do remember that I lost weight, about 10-15lbs, I only weighted 125 lbs when I started it. It was also very expensive, but well worth it. I was hoping to hear from more fellow CFS buddies out there on there experience, being as the proper Rem of sleep is a key factor in dealing with CFS. warm wishes in healing to all…..