Wow SOC......That's some food for thought. Okay I agree with you about the Valcyte but I also have reservations and say to myself what if my symptoms are not because of an HHV-6 infection and I go on this risky medication for nothing?
Neutropenia and liver problems are reversible
if caught in time. That is why doctors who understand Valcyte require you to have blood tests every 4-6 weeks to check for those problems. If your WBC or liver enzymes start to go out of range, you just stop taking the meds.
Some people feel awful for a period of time with Valcyte. I was one. It was like a really bad ME/CFS crash for about 10 weeks. But once it was over, I felt LOTS better than I had in years. My uncle and daughter had no problems with Valcyte at all. I'd take Valcyte again, bad stretch and all.
Valcyte isn't as scary as a lot of people seem to think it is. It also isn't innocuous. It's a powerful medication for a serious infection. You have to be prepared for the
possibility of having a bad stretch, or having to quit (because of side effects) before it clears the active infection.
If you have an active HHV-6 infection and your infectious disease doc or ME/CFS doc thinks you need Valcyte, then you have a nasty infection that's doing a lot of damage all on it's own. I would think you'd want to clear that even if it doesn't take care of all your symptoms.