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doctor for antivirals

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Sarah33, Jan 20, 2014.

  1. Sarah33

    Sarah33

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    Hi everyone,

    I'm new on this forum and have a question about antiviral treatment options.

    I live in the Denver area and flew to Michigan to see Dr. Lerner. He recommended treatments of intravenous Cidovir or oral Valcyte. However, I would need to go to his clinic every two weeks for the Cidovir. It would be very difficult for me to make a series of trips across the country, so I'm hoping to find a doctor in Colorado to prescribe antivirals.

    Here's where I'm confused: is Valcyte for CFS something that a general practitioner can prescribe or would I need to seek out a specialist? I've tried looking online for CFS specialists in Colorado and have only found alternative practitioners (e.g. nutritional, herbalists etc.), so any recommendations would be greatly appreciated.

    Thank you!

    Sarah
  2. Jacque

    Jacque Senior Member

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    I tried the Oral Valcyte and it made me soooooo much sicker for weeks on end .. I finally gave up... But, with that said it has helped many on this site. I too am possibly looking into the IV aspect of things but live in California... Gonna run it by my doc... I think most MDs can prescribe Valcyte but not entirely sure on that one... If you do go in it...start REALLY slow and work up... Good luck to you...
  3. vamah

    vamah Senior Member

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    My general practitioner writes my valcyte prescription. As long as you have a doc who is wlling, you don't need a specialist for this. Warning though: valcyte is not going to be cvered by some insurance if the reason for prescribing is me/cfs. It is an aproved treatment for hhv6 and cmv so that is what you want your doctor to say is the reason.
  4. SOC

    SOC Moderator and Senior Member

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    Also, you want a local doc knowledgeable enough to understand the risks of the drug and to check monthly for dangerous side effects, mostly neutropenia and liver problems. S/he needs to be willing to prescribe it long enough (1-2 years) to do the job in me/CFS patients. That's much longer than the usual treatment time for other illnesses.

    Valcyte is not your average antiviral. It has some potentially very serious side effects, so you want a doc who both understands how to use it and respects its potential for harm. Such doctors are not easy to find.

    If you can't find a cooperative local doc, consider an me/CFS specialist who will prescribe long distance but will allow you to get the regular labs at home.

    Good luck! My family has had good success with Valcyte. Hope you do too.
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    So the Co-cure list is not helpful? It is outdated some:

    http://www.co-cure.org/USA_CO.htm

    GG
  6. Sarah33

    Sarah33

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    Thank you so much for the helpful responses! Learning about other people's experience (in this thread and others) is really helping me in my search for possible treatments.

    I'm happy to hear that it may be possible for me to work with a general practitioner for antiviral therapy. I think I'll try to learn as much as possible (about medications as well as the serious side effects), and try my luck with an open-minded general practitioner. If this doesn't work, I'll take SOC's advice and see if I can travel to see a specialist who can work with me long-distance.

    Thanks, vamah, for the tip about insurance coverage. I do have a high HHV-6 titer, so I hope it will be possible to have antivirals prescribed for that.

    Thanks, ggingues, for the link to the Co-cure list. I did find this in my online search, but the list seems to be for alternative practitioners - my assumption (I could be wrong) is that they have their own protocols for addressing CFS, such as nutrition or acupuncture, and I think I'd like to try to find a conventional doc for the antiviral treatment.

    thanks again!
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    They MIGHT have their own protocols at first, but any good Dr would be open to "something" else if what they are doing is not helping you. I would call and ask and check them out!

    GG
  8. SOC

    SOC Moderator and Senior Member

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    Maybe it's just me, but I've not had any luck with the Co-Cure list. It seems the vast majority of "doctors" on that list are chiropractors, herbalists, acupuncturists, psychologists, and psychiatrists -- not fields I want for treating my serious neuro-immune illness. The ones that were more conventional, including environmental medicine, either only wanted to treat fibromyalgia, not ME/CFS, or seemed uninformed about medical treatment for ME/CFS.

    I didn't call them all, of course, and I'm sure there could be some docs on the list who can treat ME/CFS medically, I just don't find the list to be particularly helpful -- too many docs on the list not appropriate for ME/CFS. I think I'd have better luck just asking here at PR.
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I guess I was lucky, my Dr was on the list and the ACAM list, he has helped me a lot!

    GG
  10. vamah

    vamah Senior Member

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    Just out of curiosty, what is your hhv6 titer?
  11. Sarah33

    Sarah33

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    My hhv6 test was done through LabCorp, and the IgG level was 19.49 (index: negative <0.76, equivocal 0.76 - 0.99, positive >0.99).
    I'm still confused about this because most of the results I see online are in a ratio format (e.g. 1:320), and I'm not sure how my results compare to others. According to the LabCorp index, however, it's high.

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