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Valcyte Update

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by slayadragon, May 9, 2010.

  1. slayadragon

    slayadragon Senior Member

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    I've been on Valcyte for almost seven months and am going to be talking to Dr. Guyer about it this week. I thus wanted to see if I could get a sense of the "buzz" on this drug.

    (Cort, do you know?)

    According to Dr. Cheney's web site, the people in Dr. Montoya's initial group who did well on the drug hadn't been sick for very long. In the second study, which included mostly people who had been sick for a long time, not many improved by a whole lot.

    I've only personally interacted with a couple of people who feel that they've gotten close to full wellness on the drug.

    The one I "know" (in internet land) best is gasolo/Gary from ProHealth, who (last time I heard from him) said he was pretty much well. His cognition is pre-illness, but he has occasional exercise intolerance and can't push it too hard, he said. He had been sick with CFS for less than two years when he started. His illness was "moderate" (meaning that he was still working part-time as a surgeon). He followed Montoya's protocol--1800 mg for the first two weeks, 900 mg for six months. He said that he was very sick the whole time he was on the drug, and that it took him another year before he got anywhere close to pre-illness.

    Another person on ProHealth, Dhamma, said at one point that she and her daughter had recovered fully on the drug. I actually may have her e-mail address, so perhaps I'll try to get in touch with her.

    I wonder how the people who recovered from Montoya's initial group are doing.

    Dr. Lerner apparently says he has people get back to full functioning on the drug, but I've not heard from them. I've heard from some people who have improved a little bit, and some who say that Dr. Lerner tells them that they must not be taking the drug (even though they say that they are) because they've not improved.

    My own history is that I couldn't take antivirals at all when I was getting toxic mold exposure. About 18 months after starting this absurd mold avoidance, I experimented with Famvir and tolerated it fine. My mold reactivity (the extent to which it bothers me) went down right away.

    Valcyte increased my mold reactivity, so I had to go farther out into the wilderness at first. Oddly, I had a whole lot of painful detox when first on that drug. I didn't get the die-off that non mold avoiders always report though. I've been on 900 mg (plus 1000 mg of Famvir) the whole time.

    I think it's helped me a lot. My mold reactivity is a whole lot lower than it used to be, to the point that I'm getting pretty close to being able to move back to a normal life. (I'm being really cautious.) I'm still getting a whole lot of detox, and big mold exposures are noticeable. My brain is pre-illness a lot of the time, though the detox interferes with that. Other than that, I'm 100% well with no CFS symptoms.

    I wonder how long detoxing all the remaining crap in my system would take. It still feels like there's something wrong with the detox capability, since non-CFSers don't seem to excrete toxins with nearly this much pain no matter how much exposure they've gotten. I wouldn't be surprised if inability to detox were the CORE dysfunction associated with XMRV or whatever pathogen's got hold of ius.

    Anyway, I'd like advice on how to proceed with the Valcyte.

    Should I continue to take it?

    I really worry that it's going to stop working.

    Thanks for your help.

    Best, Lisa
     
  2. hvs

    hvs Senior Member

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    Congratulations, Lisa. And remember: CFS cannot be treated. ; )
     
  3. cfs since 1998

    cfs since 1998 *****

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    Thanks for sharing your Valcyte experience. There was also the story of Rochelle posted on the HHV6 foundation board, she was sick for four years and made a complete recovery on Valcyte. She said that isoprinosine also helped her a little bit.

    I think Valcyte does work better on people who haven't been sick very long. How long have you been sick?

    I have considered Valcyte myself but I figure I will wait and see if XMRV is the root cause.
     
  4. Timaca

    Timaca Senior Member

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    Lisa~
    I know someone who was ill for 18 years with HHV-6 (although he didn't know what he was ill with until late in his illness). He is well after taking valcyte for 8 months. So, people who have been ill for a long time can get well. I was on valcyte for 9 months, a friend of mine for 11 months. I stayed on it until my HHV-6 antibody titers dropped to more normal levels. My story is on the HHV-6 patient forum.

    Best, Timaca
     
  5. KC22

    KC22 Senior Member

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    Lisa,

    I am not sure how to answer your question about valcyte, but I can tell you my experience. I have been on valcyte for 27 months. I see Dr. Lerner.
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    valcyte interests me as valtrex has given me good improvment and think that maybe valcyte might do the trick. Are there any cheap internet pharmacies that are reliable that carry valcyte, one site sells them for $691-28tabs@450mg, thats a 2 week supply, so thats $8500 for about 6months worth.
     
  7. slayadragon

    slayadragon Senior Member

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    What an interesting web site! Thanks for directing me to it. I will spend some time looking at it before my doctor's appointment this week.

    I got CFS in 1996, so it's been a long time.

    Best, Lisa
     
  8. cfs since 1998

    cfs since 1998 *****

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    Recently the government of India declared the patent on Valcyte invalid. Some online pharmacies carry the generic Indian version. You will need a prescription from your own doctor first though.

    These two sites offer 120 450g tablets for $1275. There might be more out there. I don't know if they ship to Australia.
    http://www.northdrugstore.com/buy-Valcyte.html
    http://www.pharmacyrxworld.com/buy-Valcyte.html
     
  9. slayadragon

    slayadragon Senior Member

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    I just saw a doctor who says that he gets Valcyte from Canada for his patients. I think he said it was something like $300/month.

    I don't have any verification of this though.

    Lisa
     
  10. grant107

    grant107 Jean

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    I thought valtrex was almost the same as valcyte but I think they are different. I am taking valtrex and not getting better.
    Jean
     
  11. maryb

    maryb iherb code TAK122

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    I think valcyte is prescribed for CMV and HHV-6 - valtrex is for EBV, so you need to know which virus you are treating, unless you have all of them and then I suppose it would be a combination.
     
  12. slayadragon

    slayadragon Senior Member

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    Valcyte is supposed to have a broader spectrum. I've been taking Valcyte and Famvir (which is another antiviral).

    Lisa
     
  13. August59

    August59 Daughters High School Graduation

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    Valcyte is primarily targeted at EBV and HHV-6 (probably CMV too) and I say that because of my lab results prior to taking it. Also, I believe I remember that being part of the criteria for the Montoya study.
     

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