GOOD things happening!! Am I a responder???
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 35 years
- Published
- Aug 2012
Summary
Ill 35 years and largely confined to the couch in a fetal position with severe pain, she had two Rituximab infusions two weeks apart (of a planned eight) and initially became "vertical a LOT more," with flu-like symptoms down 80%+ and able to dine out, dance, drive and walk for hours. Within days it reversed: back on the couch with severe flu-like symptoms, escalated pain medication and a herpes outbreak, which she attributed to B-cells replenishing. She had not completed the full course at time of writing.
Symptoms mentioned
Symptoms: Flu-like symptoms, Pain & fibromyalgia.
Similar stories
-
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…
-
3-month IVIG experience
Did two years of IVIG (July 2016 to July 2018) at 82g per infusion cycle, run at a very slow infusion speed of 40 ("but it was the fastest that I could tolerate"), for autoimmunity, MCAS and dysautonomia that included years of muscle weakness and breathing…
-
The Temporary Recovery Stories (Judith)
Commenter Judith described multiple remissions and relapses since childhood, including a Rituximab course that caused complications. She now manages with AHCC, magnesium, Plaquenil and colchicine, and describes the illness as progressive, each relapse…
-
Rituxan Number Three, Some Improvement, Still Early to Tell
Previously bed- and wheelchair-bound with complex neuroimmune disease, EDS, PID, NK-cell deficiency and MCAS, she had two Rituximab infusions in November 2018 and a third by March 2019. By the 3-month mark she reported clearly improved muscle strength and…