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My possible Valcyte miracle!

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by RUkiddingME, Apr 20, 2013.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Two treatment regimes, a short-term regime (900 mg/valganciclovir 2x’s/day) lasting 3 weeks and a longer term (900 mg/valganciclovir 2x’s/day for first three weeks then 450 mg twice daily for three weeks or more) lasting greater than or equal to six weeks. The short-term treatment had no effect on viral load (U100 RNA) or symptoms while the long-term treatment eliminated both. A blood test five weeks after the end of the treatment for one patient, however, indicated the virus was back in full force.
    http://simmaronresearch.com/tag/valganciclovir/

    So the short course that worked was val 900mg twice a day for 3 weeks, then 450mg twice a day for 3 more weeks, so 6 weeks in total.
     
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  2. SOC

    SOC Senior Member

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    That's good news. :)

    That study was about ciHHV6. I wonder how well it applies to patients with chronic HHV6 or CMV. I also wonder how many of us with persistent HHV6 infections actually have undiagnosed ciHHV6. I don't think I do since I don't have the consistently sky-high titres indicative of ciHHV6, but many of us could have it. It would be great news if they've actually found an identifiable and treatable (somewhat) subset among us.
     
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  3. RUkiddingME

    RUkiddingME Senior Member

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    Last edited: Nov 19, 2014
    meeKO, ukxmrv, maryb and 1 other person like this.
  4. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @RUkiddingME Just read your blog and left you a message over there but wanted to post over here too that I am so happy to hear about your progress on Round Two of Valcyte. You deserve all good things ahead and I am consistently so impressed with your positive attitude and how you and your husband can laugh and find humor in the most difficult of situations. I am still striving to be more like you :hug:.
     
    meeKO likes this.
  5. taniaaust1

    taniaaust1

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    Yeah, I wouldnt be surprised if many of us do have that. In all the years Ive had ME/CFS and all the different of doctors and specialists Ive seen (it must be nearly 50 by now) .. not one has tested me for HHV6 (not one did any more tests on me either when a blood test said I had been exposed to CMV but also said that test didnt rule out reactivation .. so noone has checked to see if mine is reactivating even thou I get viral symptoms and can run fevers when I overdo).

    I bet there is many things we all have but dont know as most doctors are very slack with testing for these things.
     
  6. RUkiddingME

    RUkiddingME Senior Member

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    Thanks so much for the kind words Gingergrrl :))) From the moment I heard of Valcyte for the very first time years ago, I was looking everywhere, every forum for success stories and didn't find many, or when I did, I never knew if the progress continued. A lot of people disappear from the forums once they get a little better but we really need to hear from them to stay hopeful or at least to know how certain people make out on particular treatments. For that reason, I plan to keep posting, the good, the bad, post Valcyte experience etc..even if I end up falling back to my pre-Valcyte state.:ill:
     
  7. RUkiddingME

    RUkiddingME Senior Member

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  8. anniekim

    anniekim Senior Member

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    Great to read your latest update @RUkiddingME May I ask which is the doctor in the US that prescribes it to you?
     
  9. RUkiddingME

    RUkiddingME Senior Member

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    My US Doctor is Dr. Kogelnik :)
     
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  10. anniekim

    anniekim Senior Member

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    Thanks @RUkiddingME Sorry to be a bit dumb, but I am right he is the one prescribing valcyte to you? Not a doctor in Canada? Many thanks
     

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