Valcyte > 6 months? Would love feedback!

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Rose23, Nov 16, 2013.

  1. Rose23

    Rose23 Member

    To anyone that can help, I'd very much appreciate your help answering a few questions. My little sister has had Lyme/CFS symptoms for 2 years with elevated HHV6 titers and is currently finishing with month 4 of Valcyte treatment. She's shown some cognitive improvement but not yet any benefit in terms of joint pain, fatigue, and ability to sleep through the night,

    For anyone that has experience taking Valcyte for more than 6 months:

    1. What risks/side effects did you discuss with your doctor before deciding to continue with Valcyte for >6 months.
    2. Did you ever have to stop Valcyte due to side effects or abnormal lab values (e.g. neutrophils, liver panel results, etc.)?
    3. How long did it take you to feel the full benefit of the drug and what were the benefits for you? How long did it take before you felt the first noticeable change that you were getting better?

    Thank you so much for your help, we can't tell you how much we appreciate it.