hi. new to group. have probably had ME for over 30 years. used to wax & wane. sleep switched to hellish insomnia in my 40s. more symptoms & general broad decline into moderate disability during that time. awful marital situation collapsed me severe a year ago. ironically after just having figured out what i had after finding the ICC online. reactivated in ebv, hhv6, cmv. in detroit area, found my way to dr lerner at beginning of june. started valtrex. slow titration & started to see improvements in ebv. but marital situation still awful. had to ask him to leave in october, which caused another relapse - kicking out what physical function i had. so mostly in bed the last 6 months. only able to feed self & use rest room. was already severe cognitive & sensory. viral titers continue to climb. i had been set to do vistide when i was forced to end marriage. i am alone & have few support resources. given that i am a 1 on EIPS & alone, i opted to try valcyte. lerner kept me on the 4grams/day of valtrex as well. symptoms worsened, as expected. 1st month labs were ok. day 41 (yesterday), more neuro symptoms - like brain melting/storm - from top of head to base & through auditory areas. i have severe tinnitus as a rule, but this amped it up to painful levels. i spent day in & out of sleeping & dealing with the neuro stuff - called him since this was not what i had experienced on drug up to that point. he told me to immediately stop & i am to schedule to see him next week. any experience with this kind of reaction? i found valcyte made me worse overall - more fatigued, weak, seemed like more stuff going on in my head - especially across my sinus & eyes. lowered my already low crash threshold. but there were also glimmers of clearing. so was hoping i may be a responder. even though sick for so long. today i am just ... bummed out. i have so little quality of life. which is why i jumped at chance to try valcyte. should add that also have POTS.