To Hppeandme

Discussion in 'Fibromyalgia Main Forum' started by alaska3355, Sep 28, 2005.

  1. alaska3355

    alaska3355 New Member

    What exactly is the Xyrem program? My son has CFIDS, and he sleeps like a rock (actually like he's in a coma) for 10 or 11 hours every night. He wakes up in a fog and still tired. He's had CFIDS for almost a year now (he's 18) and is trying to go to college. So we're looking for anything that might help him. Should he do a sleep study?
    Thanks. Terri
  2. HppeandMe

    HppeandMe New Member

    Hi Terry-

    I just did a search under my name and found this question from you. I am sorry I am getting back to you so late. Xyrem is for people who can't sleep. With CFIDs you seem to go in cycles. When I started with sleeping issues I was sleeping to much and then I started sleeping less and less until I couldn't sleep at all. Now I can only sleep with Xyrem and I am not even sleeping well with it anymore.

    Please let me know how things go with your son's sleep study! If he is sleeping to much I don't think they will prescribe Xyrem. Good Luck! He is so lucky to have an advocate like you!! I know I wish I had some support.

    Take care,
    Hope
  3. alaska3355

    alaska3355 New Member

    We never did the sleep study. Our new doc is a nutritional and preventitive type, so he did tests (hair analysis, blood tests for food allergies, and a DMPSA urine challenge) and found our son's mercury to be high. So we had his amalgams all replaced and now we're doing some chelation. He had a DMPS right after the last of the filling replacements and is still weak and tired. But he's getting better, I believe. I think the mercury was keeping him from getting well, plus the food allergies. So we'll continue in this path and hope he'll be able to start college in Jan. Thanks for writing!