- Messages
- 46
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.
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.