ME/CFS, Valcyte, and me: Third time lucky

Summary

Tracy has tried valganciclovir (Valcyte) three times for ME/CFS: a six-month course in 2014 (three weeks of induction at two 450mg pills twice daily, then two pills once daily) cut short by an allergic reaction after switching to a generic mid-course; a second course on the same regimen plus famciclovir (Famvir) that she stopped after about 2.5 months due to anemia-related breathing difficulties; and a current, third course of just one 450mg pill a day, taken selectively on days it wasn't causing weakness, now five months in. Before this third attempt her capacity was only around 25%, not enough to manage even a weekly four-hour volunteer phone shift. On the low-dose third course she has seen a lower heart rate, better activity tolerance, reduced post-exertional malaise, improved temperature regulation and sleep, and has risen to about 50% capacity, enough to teach a college course. The gains have held over the five months so far, though she says she is not back to normal and remains dependent on supplements to function; her first two courses each brought partial, non-durable improvements before being cut short by side effects.

What they credit

Credits Alternative therapies, Antivirals, Supplements, Famvir / famciclovir (Pridgen), Valcyte / valganciclovir.

Symptoms mentioned

Symptoms: Breathlessness, Mast cell (MCAS) & allergies, Muscle weakness, Post-exertional malaise, Temperature regulation.