Health Update #4: Recovery is a %*#*&$@!

Summary

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 craniocervical fusion (six screws, two rods, bone matrix protein and cadaver bone, with intraoperative traction), a tethered cord release, and a hematoma evacuation. Before surgery she was bedbound and wheelchair-dependent, including six months of daily waking apnea and paralysis, and recovery involved complications such as recurrent spinal fluid leaks and a severe mast cell flare. Her ME symptoms remitted during the surgery itself and, as of the February 2020 update, had never returned over more than 15 months, with POTS in remission since 4 months post-op and mast cell activation syndrome dramatically improved; she could do an hour of aerobics, hike four days straight, and walk 20,000 steps in a day. She describes the improvement as sustained with no relapse, but says she must permanently strength-train and manage her connective tissue to maintain it.

What they credit

Credits Craniocervical surgery, POTS medication, Antihistamines & MCAS, Antivirals, Mould avoidance, Surgery & structural, Craniocervical fusion / tethered cord, Fludrocortisone / Florinef, Hydrocortisone / cortisol, Mestinon / pyridostigmine, Mold avoidance / CIRS protocol, Valcyte / valganciclovir, Valtrex / valacyclovir.

Symptoms mentioned

Symptoms: Mast cell (MCAS) & allergies, POTS & dysautonomia.