Dina Guzovsky Profile picture
Lawyer, HLS '11 grad, waylaid by MECFS
Apr 20, 2023 4 tweets 2 min read
@edyong209 Thank you Ed! 🙏🙏 if you continue to do stories on this topic, it would be cool to have one devoted to specifically pointing out the biochemical abnormalities found in ME patients (and likely long covid patients, but maybe not enough data yet). You mentioned the two day... @edyong209 ...pulmonary exercise test and the lean test, but there are many other results, such as lowered NK function, preload failure, small fiber neuropathy, SIBO, higher brain temperatures and swelling of the brainstem, structural c-spine abnormalities, blood clots, unusual levels...
Sep 4, 2022 19 tweets 21 min read
Some summary info #mecfs #pwME

Treatments that haven't worked for me: LDN, IVIG, Valtrex, Mestinon, ketamine, Diamox, Adderall, memantine/amantadine, cromolyn, various allergy meds, prednisone, Plaquenil, L-dopa, aspirin, Xifaxin, and about a million vitamins and supplements. (Oh, also Florinef, and B12 injections, probiotics, prebiotics...)

Treatments that have: Abilify, ketotifen, Singulair, maybe Deplin.

Diagnoses: MECFS, MCAS, SIBO, dysautonomia (autonomic testing abnormalities), preload failure (Systrom's exercise test), some other abnormal