Discussion in 'Fibromyalgia Main Forum' started by lyncourt777, Aug 26, 2012.

  1. lyncourt777

    lyncourt777 Member

    Does anyone with M.E/CFS who has taken 6 months of Valcyte care to share there story?

    Thanks, Kevin
  2. heaps

    heaps New Member

    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,