Anyone tried Valcyte or Cidofovir?

Discussion in 'Fibromyalgia Main Forum' started by Sceptical, Aug 9, 2010.

  1. Sceptical

    Sceptical New Member

    Both are extremely toxic but the latter is effective against other viral infections as well (not only herpes). Let me refer to the web page of hhv6 Foundation. Side effects might be a problem.

  2. sascha

    sascha Member

    for over 5 months a few years ago- for viruses i tested high for.

    it did help me with certain symptoms (brain fog, inability to recover from exertion with rest), but many symptoms remained unaffected.

    it was not a pleasant 5+ months being on valcyte. it was tough. i don't regret doing it. some people have no side effects. sascha
  3. mary01

    mary01 New Member


    Can you please give me an idea of the range of your virus titres? My doctor has discouraged me somewhat from trying the anti-virals because my levels are not in the high range. I would love help with the brain fog, so I'm tempted to give them a try.

  4. Sceptical

    Sceptical New Member

    Valcyte is not strong enough bc it covers only the herpes family. However, Cidofovir is effective against a wide range of pathogens. Due to the fact that we do not know exactly which patogens are implicated, a broad spectrum antiviral would make more sense. Prof. Komaroff also said that Valcyte trials have been disappointing (it is weak).
  5. sascha

    sascha Member

    just before starting on valcyte (mid 2007), my HHV6 tested at over 10,000. it gradually went down and is now holding at around 320. i think. need to find out what 1:640 means.

    i can't interpret latest test number (6/10), but it's 1:640 with reference range greater than 1:10.

    HHV6 was the main and highest tested virus.

    i tested positive for HSV1, but it wasn't terribly high, and went down. started at over 6, went down to 3.83.

    i tested negative for EBV. does that answer your question well enough? sascha
  6. Sceptical

    Sceptical New Member

    I am not sure whom you were responding to. My situation is similar: elevated HHV6 antibody titers, positive nested PCR, positive nested PCR regarding EBV but negative serological results.

    HHV6 might cause this disease but the causation could be proved only indirectly from an effective antiviral treatment. Cidofovir is effective against a wide range of pathogens (Valganciclovir is not but is safer) but very toxic. Thus doctors understandably shy away from this treatment. The perpetuating factor might vary from person to person and might incude several pathogens as well (parvo B19, Lyme, entero, echo, XMRV, HERV-18...).
  7. ladybugmandy

    ladybugmandy Member

    i did valcyte+valtrex 3 yrs. maybe a little help....but not sustained. my viral titres were never very high.
  8. Sceptical

    Sceptical New Member

    Valcyte is not strong enough.