keke/ Dr Levine

Discussion in 'Fibromyalgia Main Forum' started by winsomme, Feb 8, 2007.

  1. winsomme

    winsomme New Member


    thanks for your note on Dr Levine.

    did she tell you what dosage regimen you would be using on Valcyte?

  2. keke1972

    keke1972 New Member

    My dosage is 450 mgs.(2)tablets two times per day. The total amount per day is 1,800 mgs. I have had this illness for a long time so I am a little concerned about my recovery. I know the man from Petsmart had the illness for 18 years so maybe it will work. Dr.Levine did tell me it may take longer to notice any changes. I agree with a lot of people here that other viruses may be involved and not just hhv-6 and EBV. I don't know if I have hhv-6, but my EBV levels continue to rise. My PCP told me I had a chronic infection and so did another infectious disease doctor. Who knows?? I guess I will have to wait and see. Take care, KEKE 1972. Also, do you see Dr.Levine? How long have you been sick?
  3. winsomme

    winsomme New Member

    yes, i have seen her in the past and now am following the Valcyte info closely.

    i have been sick for about 7 years, and have tried lots of different treatments.

    do you know how long you are to stay on 900mg two times a day dosage?

  4. foxglove9922

    foxglove9922 New Member

    Hi bill,

    Hope you don't mind if I jump in here as well. I am also a patient of Dr. Levine's and just filled my Valcyte Rx. To my amazement my Medicare Part D covered all but $5.35. The pharmacist said that was over a $2500 savings to me and I also have BC/BS secondary.

    Anyway, keke,,,,how long will you be on the 1800 mg? I have been ill for 5.5 years and have had a recent reactivation of EBV and high HHV6 titer of 1:1280. I will be on 1800 mg for a week, then 900 mg thereafter. Is that also what you will be taking? or are taking? Not sure if you've already began the process.

    best wishes to all,

  5. foxglove9922

    foxglove9922 New Member

  6. keke1972

    keke1972 New Member

    Hi Foxxglove,
    Dr.Levine told me to take (2)450 mgs.(2)times a day for two weeks. After that I will take (1)450(2)times per day. I posted another reply to you about you taking valcyte while in school. My thinking today is like a wet sponge. It's embarassing...........I feel very clouded and exhausted. I got up way too early because my son woke me up at 6:00. That's way too early for me.......I will continue to post messages. I spoke with Dr.Levine yesterday, but she didn't have all of my blood work back. Today she will call me. Take care, Keke1972

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