The Strange Syndrome: MCAS, ME/CFS, Fibromyalgia and Long COVID (comment)
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- 5 years
- Published
- Jun 2023
Summary
Xolair (omalizumab), given as a bi-weekly injection by her GI doctor for mast cell activation syndrome. The patient, described by her father in a comment, had intense MCAS for five years alongside ME/CFS, POTS and gastroparesis, and was very severely ill: bedridden and dependent on TPN and IV fluids. Her father reports the bi-weekly Xolair injections have been "extremely helpful," though the account comes from him rather than from her directly. It does not say whether the benefit is in overall function or specifically fewer MCAS flares, and gives no indication of relapse or of the injections ever stopping.
What they credit
Credits Salt, fluids and compression, Tube feeding (NG, NJ, PEG, TPN).
Symptoms mentioned
Symptoms: Gut problems, Mast cell (MCAS) & allergies, POTS & dysautonomia, Pain & fibromyalgia.
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