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.
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.
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.