An IVIG ME/CFS / POTS Treatment Success Story
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- 9 years
- Published
- Aug 2018
Summary
Received a course of IVIG infusions; exact doses aren't given, but after her first infusion caused aseptic meningitis, later infusions were given more slowly over two days each, with the course running from around mid-2016 to June 2017. She had been ill since age 18 and symptomatic for nine years before starting IVIG, with three unplanned hospital admissions, periods needing a wheelchair, and a full year bed-bound. Improvement began with her first infusion, with immediate gastrointestinal relief, and about two years after her first infusion she was working part-time, driving, biking for the first time in nearly a decade, and walking an hour daily, though she still had POTS symptoms and some bad days. Despite the ongoing improvement, her new doctors refused to continue IVIG because there are no NICE guidelines supporting its use for dysautonomia, so treatment was stopped for guideline/access reasons rather than because it stopped working.
What they credit
Credits IVIG, POTS medication, IVIG / subcutaneous Ig.
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