Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Is there any harm trying Valcyte without all the tests beforehand?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Rich D, Mar 9, 2014.

  1. Rich D

    Rich D

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    I'm interested in trying, but not sure whether I want to take the time and expense to visit Dr. Lerner. My standard tests showed nothing, but I do understand that the viral docs don't trust those results. I have a sympathetic doctor who might be willing to try a protocol if he had specific guidelines. The infectious disease specialist I've seen would not, though.

    Is there a specific protocol that can be used? I've seen the PDF on Lerner's website but I'm not sure that is specific enough. I'm also wondering if any docs out there will do skype treatment?
     
  2. SOC

    SOC Senior Member

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    Valcyte has potential for serious (even fatal, if not identified and treated) side effects, so it's not a medication to take on the off-chance you might have active HHV6 or CMV. It's also extremely expensive (several thousand dollars per month), so your insurance is not likely to pay for it without the tests to support it, and even then insurance companies often fight tooth-and-nail to avoid paying.

    If you have an active HHV6 or CMV infection, there are not many other choices. The potential dangerous side effects can be avoided or mitigated with very careful monitoring so that you stop taking it as soon as tests show things going south. You'd probably want to have a doctor who understands the med so that proper precautions are taken for your safety.

    To be clear, I'm not at all opposed to Valcyte. My daughter and I both took it for 2 years and now, 2 years later, are taking it again. I'm just saying you need to respect the med and use it appropriately and with care.

    ETA: My insurance company claims the retail cost of 900 mg of Valcyte daily is currently $4000 per month. That's $67 per pill. The higher dose often used during first round of Valcyte, 1350 mg daily, would therefore cost $6000 (retail) monthly.

    Fortunately, Valcyte goes off patent in the spring of 2015, I think, so generics would then be legally available at about half that price.
     
    Last edited: Mar 9, 2014
    barbc56 and Ema like this.

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