CFS: Email to K. Loomis

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Dec 27, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. just thought i'd share some email correspondence with K. Loomis.

    My email:

    Do you think Dr. Montoya's study, when published, will make it easier for
    > people to obtain antivirals for CFS?
    > Also, is Dr. Montoya still following the patients in the study now to see if
    > they improve more later on? Does this have something to do with why
    > publication is taking so long?

    Her email:

    Yes, yes and yes!

  2. redhummingbird

    redhummingbird New Member

    Hi Sue!

    Thanks for posting this. It sounds encouraging. I can't wait to read his study.

    If my new doctor okays it, I'll be starting Valcyte in January. I've been trying to wait until Dr. Montoya publishes his study but my fatigue is just profound now (I'm practically bedbound) and I have chest discomfort.

    How are you feeling?
  3. ladybugmandy

    ladybugmandy Member

    thank you for asking. i am excitied that you will start antivirals.

    unfortunately, i am not doing well at all and have no idea if i will ever really improve.

    i am trying to be patient. i seemed to improve and then declined again. i am sure that is a very bad sign.

    dr. lerner feels i need valcyte but liver is not cooperating.

  4. redhummingbird

    redhummingbird New Member

    Hi Sue-

    I'm so sorry to hear that you're not doing well. It's so difficult to have hope and/or be patient when in a bad crash (or flare).

    I wonder if there isn't something in the air. I don't know of anybody who is having improvements right now. It seems many of us are in some sort of downward spiral.

    You have such a determined spirit that I believe you will have longer improvements.

    Are you still taking Valtrex?

    I wish you much peace.

  5. waltz

    waltz New Member

    Thank you for sharing. We are all waiting for the publication.... I wonder when it will be out. I wonder if the patients have improved more since the clinical trial ended.