Discussion in 'Fibromyalgia Main Forum' started by gatorlass, Aug 31, 2006.

  1. gatorlass

    gatorlass New Member

    This is only my second post. HOW DO I GET XYREM!! P/C Doc just told me he is not familiar with it so isn't comfortable prescribing it. Recommended a Rheumy who I immediately called. Talked to her nurse who told me she had never seen the Doc write a Rx for Xyrem. Also, has never ordered a sleep survey done on a patient. All very discouraging.

    I guess I'll just have to wait for my Neurologist Appt. on 10/26/06. Not optomistic about that either. Nurse says he has never prescribed Xyrem to FM patients, only Narcolepsy pts.

    I know I would feel so much better if I could just get some sleep!;-) But, I'm luckier than most. Can work full-time and raising my 5 yr old granddaughter as well.

  2. Daisys

    Daisys Member


    What I did: I went to Teitelbaum's site, Vitality101 and looked up practitioners and found an MD in my area who trained in that protocol. I did that because they believe in FM and CFIDS and know how to treat it. He's the one who got me on xyrem. He's a regular MD, so works with insurance.

    If you google xyrem, you'll get to their official site with a lot of basic information.

    The number I received when registered is: 1 (866) 997-3688. I don't know if they welcome callers who aren't yet in their system, but the site has a lot of info.

    You can also search this board and find posts of those who use it. Another board that has a lot of info is the Talk about sleep message board. Especially the narcolepsy board has lots of info because they have longer experience with it.

    Hope this helps! :)

[ advertisement ]