Valcyte statistics?

Discussion in 'Fibromyalgia Main Forum' started by DavidJ., May 20, 2009.

  1. DavidJ.

    DavidJ. New Member


    this is David from Germany.I have a HHV 6 infection and lately an EBV infection too . I just found out about this site and would like to know how many people on Valcyte you have seen posting here that really got their health restored and how many didnt get well. Maybe 50/ 50? Or more per cent on the health restored site?

    I ask because in America the doctors seem to prescibe this very often , whereas in Germany 99 % per cent of the doctors dont seem to know what CFS is. I even had a doctor who had never heard of HHV 6 ,lol ! So it is hard to get Valcyte prescibed and health insurance wouldnt pay for it anyway ( 6 months Valcyte mean 15.000 dollars here in Germany).
    However, I finally had a doctor make a blood test for me, who knew about CFS. He sent me to a special naturopath. The medication I got from her makes all my symptoms worse , but she said its a good sign :)
  2. stschn

    stschn New Member

    We still don't have the trial results on Valcyte and some of us are wondering if we ever will. A lot has been wirtten here about it so go to the search bar on the top left and type in Valcyte. I took it for 6 months and got some cognative improvement and I am happy about that but sure wish it had been more. I was not in the trial and the trial peope have been asked not to report until the information is releasted by Stanford. I'm 7l and have had this for 2l years and some do say you do better if you catch it early. I also have EBV and CMV along with the HHV6. What about ampligen? Is that approved there? Joyce
  3. sascha

    sascha Member

    i wasn't in the Stanford trial for valcyte, but i am working with the doctor (Dr. Montoya) who ran the research study.

    i had very high HHV6 to begin with, and it has come way down since my 5+ months on valcyte. i have experienced improvements, but am not "cured" as such. the first improvement for people who get positive results (some people don't get anything from this course of treatment) is that cognition improves. i definitely got this benefit. the return of energy is more problematic. sometimes i seem to be improving, but then i backslide. sometimes i seem to be generally feeling better, but then that dissipates for a time. overall i can do more and at times feel i am making progress. it's intermittent- not steady- but i think i'm gaining ground.

    i think there are a lot of causative factors in cfids, and maybe valcyte gets at some of them, but not all. but some can be a lot when you've been under the cfids cloud for years and years.

    best of luck to you- Sascha
  4. ladybugmandy

    ladybugmandy Member

    david..can you go see dr. kenny demeirleir in belgium?
  5. DavidJ.

    DavidJ. New Member

    Thanks a lot for all your answers :)
    Mandy: Thanks,I didnt know this doctor from Belgium, I have to do some research if I dont get well again...

    Update: After being extremely bedridden the last weeks after taking my medication I already had the power to go for a very small walk again yesterday :) Maybe I will open an extra thread to inform you about my progress!

    As to my medication: I take homeopathic HHV6 and EBV "antivirals", there are some naturopaths or pharmacies who can produce it .It shall "divert" the viruses from the body, sorry I dont know how to better explain it. Most of the naturopaths cant produce it, but you should go and see the ones who also educate, not the "normal" ones.My one didnt see CFS as uncurable at all. After taking the medication I felt some kind of die-off process and all my symptoms worsened.

    [This Message was Edited on 05/22/2009]
    [This Message was Edited on 05/22/2009]
    [This Message was Edited on 05/22/2009]