Hi Ladybug,
I just posted on immune support. I just found this website. I have been taking Valcyte for three weeks under Dr. Lerner's care. Day three was bad. Around day 8-12 was bad again then the next two days I felt awesome (really human- like the OLD me), then back to cruddy. Some bad headaches through out the three weeks. But I want you to know I haven't felt any worse than my usual really bad days, but my two awesome days were better than any I have had in years. So I remain quietly hopeful. I have been sick for 11 years. I eat healthy. I don't drink alcohol, coffee or pop. Before all this started, I worked out 5-7 days a week.....but now I am pretty much worthless if you want anything done. Dr Lerner took me off of work- which was the #1 thing that I think helped since my body can rest frequently as it needs. I seem to require at least 10-12 hours of sleep per day, sometimes naps, sometimes just laying down to rest mid day. My active day is a load or two of laundry or cooking dinner. If you want to privately email me, I am at aepalisades@aol.com. Put something like Dr Lerner in the subject so I don't inadvertently delete it. Otherwise I will check back here in a day or two.
Best wishes with treatment
aepalisades