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HHV-6 Active Infection

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by mstrlucky74, Jul 25, 2013.

  1. mstrlucky74

    mstrlucky74

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    As stated before my IGg for HHV-6 came back 1:1280.....very high. I am going back to the ID doctor next week. Is there another test that can be performed that will confirm for sure an ACTIVE infection. I have the valcyte but am scared to take it due to the side effects. I have been sooooooooooo tired lately and can't think clearly. Thanks.
     
  2. SOC

    SOC Senior Member

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    Like everything else in life, choosing to take serious meds for serious illness is a trade-off. The question I asked myself was was, "What will I do if I don't take this med?" For me, the answer was that I would stay this sick or get sicker as HHV-6 entrenched itself in my nerves, brain, and heart. :eek: So my choice was to take Valcyte under the care of a knowledgeable doctor who watched very carefully for bad side effects so we could stop the med while the side effects were reversible.

    My uncle and daughter had absolutely no problems with Valcyte with years of treatment. I had a bad stretch that was like a really bad ME/CFS crash. I suspect it was an IRIS-like reaction. Once that was over I felt a LOT better. I did not have liver problems or neutropenia or any of the listed bad side effects. If I needed to, I'd take Valcyte again without hesitation.

    Don't get me wrong -- Valcyte is not for the faint of heart. You have to be willing to take the risk in order to get better. You might have to put up with a period of feeling rotten before you feel better. Not everyone is willing to do that. If you're really worried about the side effects, taking Valcyte might put you under more stress than you can handle.

    You might want to do some reading at the HHV-6 Foundation to help you think this all through. There is a substantial section on testing that might answer your question.

    FYI: If your ID doc suggests a high induction dose followed by a lower dose for an extended period, you should be aware that ME/CFS patients, at least, appear to be reacting poorly to that dosing. Starting low and working up seems to be working better.
     
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  3. vamah

    vamah Senior Member

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    Am pretty sure high IGg means active infection. Mine was the same as yours and I have been on valcyte for a few months now. The only side effect I had was being very, very tired for the first week or so. I understand your worry because I worried too, but just wanted you to know that not everyone has bad side effects.
     
  4. August59

    August59 Daughters High School Graduation

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    I think there are some new test that are being developed because the ones we have are not great at detecting it anyway. They want a new test that will accurately detect HHV-6A between HHV-6B because I believe those 2 viruses have pretty different effects on the person.

    The problem is HHV-6 can latent for long lengths and it likes the nerves and the brain to hide out in and I'm pretty sure the brain is it's preferred site of being latent, but that is just what I thought I had read before. I'm sure there are others that can give you a better answer on that.

    I'm pretty sure I have seen it stated by Dr. Montoya, maybe Dr. Peterson or Dr. Lerner that you will not see iGm antibodies in a re-activation of a virus. iGm antibobies will only show up on the initial introduction of the virus in the body and once it has gone latent or lytic(?) the initial time the iGm antibodies will fade away and if re-activation occurs the iGg antibodies will be the fighters.

    I'm going to look for a source on this one!
     
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  5. mstrlucky74

    mstrlucky74

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    Thanks everyone, great info. So is there another test i can ask my doctor to perform to confirm an active infection? Also, because my doctor was very apprehensive about giving me this in the first place and now i am going back with this meds becuse it is almost a year old and i want a fresh dose( i did not take the original script) is there anything i can say to him that might sway his thinking about my 1:1280 iGg being active because he was very sure it was inactive. Thanks
     
  6. SOC

    SOC Senior Member

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    Testing for active HHV-6 is not 100% accurate. Read here for the best information available on testing.
     
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  7. mstrlucky74

    mstrlucky74

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    Thanks....going to doctor tomorrow
     
  8. SOC

    SOC Senior Member

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    Good luck!
     

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