Discussion in 'Fibromyalgia Main Forum' started by lyncourt777, Aug 26, 2012.
Does anyone with M.E/CFS who has taken 6 months of Valcyte care to share there story?
firstly tested positive to ebv and cmv also have low nk function and chronically elevated lymphocytes and cd t cells. cfs for 10 years with acute onset from cmv, chickenpox and ebv all within a 6 month time frame.
Using dr lerners fatigue scale i would have rated myself a 3 out of 10 before any antivirals.
I started famvir which helped improve symptoms and lower my high cd t cells. I initially had a high level of function on famvir for a short while, eventually settling at 6 out of 10.
After a couple of years on famvir(which i was using 250mg twice a day) i added valcyte at 450mg a day. so dosing i valcyte at night and famvir 250mg in the morning. I have been on valcyte for about 4-5 months now and have improved to an 8 out of 10 and feeling good but always looking for more improvement. Im working full time and doing some light exercise.
I initially felt worse(increased fatigue and depression etc) on valcyte and stopped and started it a few times but it wasnt until i sorted my chronic sinus infections by taking doxycycline for long periods. Also my adrenal hormones were low, dhea well below normal. Once i slowly increased my dhea level i started feeling a little better and when starting valcyte with these things sorted, i could then handle valcyte and benefit from it.
So i think trying to treat other underlying issues will help one to tolerate valcyte better and i think many of us have adrenal fatigue indicated by low adrenal hormones.
My plan is to continue with valcyte famvir for a total of about 10 months and then continue on famvir, after that i am unsure.
i hope this helps,
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