Dr. Levine and Valcyte

Discussion in 'Fibromyalgia Main Forum' started by gettingwell, Jun 17, 2008.

  1. gettingwell

    gettingwell New Member

    Hi there,

    Is anyone here being treated by Dr. Levine with Valcyte? I am wondering what protocol she uses and how your experience has been.

  2. Slayadragon

    Slayadragon New Member

    This is what I've noted on the board:

    Back in January 2007, Dr. Montoya gave a preliminary report of his work with Valcyte at a conference in Florida. I think that Dr. Lerner also gave a presentation then too.

    Almost immediately thereafter, there were some reports on the board of Dr. Levine prescribing Valcyte according to the Montoya protocol.

    Within a month or two, reports seemed to suggest that she was moving away from that (except maybe with patients who had already started the drug). A few people reported that she was using low doses of Valtrex (a milder antiviral) with them.

    I don't know if she's using it or not any more. I've not read about that here recently.

  3. gettingwell

    gettingwell New Member

    Thank you so much for your response and insight. I am glad to hear that your daughter is improving - I hope she continues to do so.

    I am curious to know if Dr. Levine suggested using Valcyte or if you brought it up. Did she have your daughter on any other antivirals first? Also, during your daughter's Valcyte treatment, how often did she see Dr. Levine?

    Thank you,
  4. ladybugmandy

    ladybugmandy Member

    i am impressed. i dont like her but am very glad she is using the antiviral protocols.
    congrats on the improvement!
    [This Message was Edited on 06/17/2008]
  5. gettingwell

    gettingwell New Member

    Thanks for the Levine information. Does she think that the Valcyte was successful for your daughter? Has she talked about other patients' experiences on the drug? I am just trying to get a sense of her feelings about the Montoya protocol, etc.

    Also, may I ask why you decided to work with Levine instead on Enlander?

  6. aftermath

    aftermath New Member

    Also, may I ask why you decided to work with Levine instead on Enlander?

    In addition to her experience, as mentioned above, Dr. Levine is one of the few legit MDs who will treat us that charges fair fees.

    NO insurance company is going to pay for a $600 initial visit, etc. Hopefully, this will change as studies confirm that this illness is "real."

    Did she return from maternity leave?