week seven on Valcyte

Discussion in 'Fibromyalgia Main Forum' started by gasolo, Mar 24, 2007.

  1. gasolo

    gasolo New Member

    I'm just starting my seventh week. The past three to four days I have seen substantial progress. My cognitive function (brain fog) and energy levels have have shown the most progress. I appear to be over the negative Valcyte reaction (herxing?). I'm still taking 950mg valcyte daily and plan to continue for another 4 1/2 months. I,m starting to believe there is light at the end of this tunnel.

    Gary
  2. roge

    roge Member

    good stuff, glad to hear you believe there is light at the end of the tunnel, is an amazing feeling no doubt, i look forward to that for me one day.

    keep progressing man!

    peace
  3. dahopper

    dahopper New Member

    I am so glad to hear this....I am on week two of valcyte and the third day after starting it hit me really hard but now I am seeing some progress also with my energy level....not much but some. But I was knocked down pretty hard so now I am having alot of hope here. Thank You so very much for posting this it just encourages me so much and please keep us with a update and I will try to do the same. Hugs, Debbie
  4. sturg1

    sturg1 New Member

    I am following your treatment as well as others! Thank you for keeping us up to date. I wish you the best of days with your "new brain"! I cannot imagine how that feels!!!!
    Take Care,
    Tracy
  5. SpiroSpero

    SpiroSpero New Member

    Hi,

    that's really good to hear, could you please tell us/me your EBV/HHV6 values?

    Greets

    Manuel
  6. gasolo

    gasolo New Member

    Hi Manuel

    My EBV VCA and HHV-6 IgG antibodies are high. Unfortunately I obtained these results from a lab in Utah. These values were reported as a number rather than a titer. My values were 5 fold greater than the highend of normal. In Montoya's study the values were reported as a titer and cannot be compared to the values from the Utah lab.

    Gary
  7. landrun89

    landrun89 New Member

    Gary,

    What an encouraging report on your 7th week for those of us who are on Valcyte. I am now at 4 1/2 weeks and have the same symptoms as before starting treatment except they seem more intense or concentrated. I have definitely had to cut back on my activity level the past 2 weeks and I am not getting the recovery level that I had gotten previously after rest periods. I am hopeful I will be a responder although I was never bed bound and have been on an antiviral for many years. My Doctor indicates I have a moderate case of CFS. Although everyone will probably have a different response in terms of time frame I am looking forward to getting some positive cues.

    Thanks again for giving me hope on this progressively difficult journey of some 18 years.

    landrun89
    [This Message was Edited on 03/24/2007]
  8. SpiroSpero

    SpiroSpero New Member

    Hi Gary,

    thanks for your answer. My values for EBV (IgG + EBNA) were >100 RU/ml . My HHV6 was only 1:80.
  9. ritatheresa

    ritatheresa New Member

    I'm going to be starting with Valcyte in the near future. I'm going to be taking it once a day (I think it's 950 mg).

    Your also taking it once a day? I've seen most people starting with 950 twice a day so I'm trying to figure out if there would be a difference just taking it once a day.

    I'm afraid of viral replication etc, etc. If you have any information on it could you please share it,

    I hope you continue to feel better, Godbless Ritatheresa
  10. Forebearance

    Forebearance Member

    That's great news, Gary!

    Thank you for sharing.

    Forebearance
  11. gasolo

    gasolo New Member

    Hi Ritatheresa

    I'm presently taking 900mg of Valcyte once daily. I started with a three week course of 900mg twice daily. This is the same protocol that Montoya used in his clinical study. I'm not sure why he chose this dose but this is the same dose one uses to treat cmv retinitis.

    Gary
  12. foxglove9922

    foxglove9922 New Member

    Thank you ever so much Gary for keeping us posted on your progress with Valcyte. My start date is 5/1/07 and I find it very encourgaing to at least be aware of what may be ahead of me.

    Bless you for being a trailblazer!

    Foxglove
  13. acer2000

    acer2000 New Member

    I was wondering if someone on valcyte who is improving can answer a couple questions. In the montoya paper he lists as the symptoms of CFS "symptoms consistent with depression" which I am assuming means stuff like decreased sex drive, etc.. Stuff that you might attribute to hormonal changes (either adrenal or whatever). Has any of that stuff improved on the valcyte treatment? Or is it like after 6 months on valcyte you still need to supplement your hormones... Just curious about that.

    thanks!
  14. foxglove9922

    foxglove9922 New Member

    Good questions.....does anyone hear know?