These past three months have simultaneously gone by quickly and slowly. I have no idea if I'll be a responder. I had hoped to see some sort of consistent improvements by now but it seems the most that doctors really know about Valcyte is that people's' response varies and one can't make any assumptions based on people's response. Some people have few problems tolerating Valcyte and have had good results while others have a horrible time and don't respond and others have a horrible time and good response, etc...
I have developed a new symptom which is a feeling of weakness in my muscles, especially my legs. I've had a few days of rather intense muscle pain also as well as some (what feels like) tendon pain in my hands and my right foot.
I backed of the Amantadine today as well as the methylation protocol supplements. I'd like to back off the Valcyte as well but I read through Roche's information today and it said not to stop Valcyte because the virus (referring to CMV which I don't have but I assume it applies to HHV 6 and EBV as well) can return quickly if the drug is stopped.
As far as improvements I've had some in cognitive functioning and mood but not too much in terms of physical functioning although this is a bad day to rationally evaluate that because of the bad weakness and muscle pain.
My doctor's office wrote back and they want me to stay on it for the full six months.