Onset: Part III (Connections)



By Jennifer Brea.


I’ve previously written about how a bad mold exposure and my acute, viral onset of myalgic encephalomyelitis (ME) could have directly and indirectly damaged my connective tissue, including the ligaments in my neck, causing craniocervical instability (CCI). A key mediator of that damage might have been mast cell activation and collagen-degrading enzymes.

The coup de grâce (and it really was, oddly, a “stroke of grace”) was the thyroid surgery that took a “mild,” purely biochemical case of CCI and turned it into a symptom complex clear and severe enough to be diagnosed.

I printed out the Hunter-Hopkins advice sheet for people with ME/CFS and showed it to the anesthesiologist. I was at UCLA to have a complete removal of my thyroid due to Stage I papillary thyroid cancer. The sheet got a lot right, with advice applicable to patients with POTS and with mast cell activation syndrome (two syndromes I also had), although it did not explicitly name either. My anesthesiologist was wonderful: very happy to find a protocol that he was both comfortable administering and that adhered to this advice. He skipped several drugs, keeping it “clean” and giving me primarily (possibly solely) propofol.


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Link to Jen Brea’s story

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