My Valcyte pilgrimage
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- 18 years
- Published
- Dec 2012
Summary
Eighteen years into illness and previously bedbound, unable to sustain even a five-minute conversation and enduring daily headaches at 7-8/10 severity for up to 15 hours a day, reported that after 18 months on Valcyte they could take frequent 30-45 minute walks with their dog, sustain hours of cognitive activity on many days, and drive safely for 20 minutes, with far less chest pain and shortness of breath. Headaches fell to about 2-3 hours a week at roughly 2/10 severity. They still called themselves "still sick," describing the change as "life altering" rather than a cure.
Symptoms mentioned
Symptoms: Breathlessness, Headaches & migraine, Heart symptoms & palpitations, Pain & fibromyalgia.
Similar stories
-
Björn recovered from severe ME with antivirals (valganciclovir, ritonavir and isentress)
Started Otezla in autumn 2018, which "made a big difference" within a month, then added valganciclovir, ritonavir and Isentress from January 2019. Had been confined to a dark room, wheelchair-bound and unable to tolerate sound or light after a 2016 crash;…
-
Björn recovered from severe ME with antivirals (valganciclovir, ritonavir and isentress)
Ran a long multi-drug protocol: valganciclovir at 450mg twice daily for a year then a lower maintenance dose for another 8 months, repeated after HHV-6 reactivated again; famciclovir 500mg three times daily for 6 months; gammaglobulin infusions every three…
-
Health Update #4: Recovery is a %*#*&$@!
Jennifer Brea had been managing severe ME for about 8 years with Valcyte, Valtrex, Mestinon, and fludrocortisone plus mold avoidance, which had only brought her from severe to moderate; in November 2018 she underwent three surgeries over six weeks — a…
-
Valcyte - Third Time Lucky
After two earlier unsuccessful attempts, a third course of half-dose Valcyte (450mg/day) took her from an estimated 25% of normal capacity to about 50%, from being, in her words, "warehoused" to "working a little," including teaching about two hours forty…