Thread by @dinaguzovsky

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

labwork. Connective tissue issues: 4-5/9 Beighton, TMJ, hip dysplasia at birth, but no EDS or genetic markers (Dr. Milunsky, geneticist). CCI (Dr. Patel, etc.), SFN.

Doctors: Dr. Bonilla @ Stanford, Dr. Chheda @ CCD, Dr. Felsenstein, Dr. Systrom, and Dr. Farhad @ MGH/Brigham...

and Dr. Lynch in Northampton, as well as various chiros/PTs along the way.

Symptoms (really the most classic, "simple" presentation): fatigue, brain fog/cognitive issues, PEM (sore throat, malaise, headaches), orthostatic intolerance (currently fully controlled by Singulair...

and ketotifen), and sleep issues. No pain.

Severity: Can take up to a ~ 10 minute walk without crashing later. Can drive but not long distances. Can leave the house occasionally for appointments, errands and socializing, although need significant rest afterwards --

currently trying to leave as little as possible. I have an hour or two of concentration ability each day before things start going downhill. I usually sleep 10-13 hours a night, more if I'm crashed, with a 2-3 hour nap about 50% of days. I don't have any light/sound...

...sensitivities or gastro issues. I can typically watch TV and read the internet without a problem; it's harder and more tiring for me to handle books and long articles. I can do some ADL, others (cooking, cleaning, grocery shopping) I need significant help with.

Current treatments: subcutaneous peptide injections (TA1, next will try TB4) started a few weeks ago; a temporary regime of radical rest (basically staying in bed as much as possible); various CCI related treatments (currently a chiro and PT, with potentially more to come).

Possible next steps: lymphatic massage/Perrin protocol, various forms of vagus nerve stimulation, HBOT, ozone therapy, blood thinners, midodrine, another trial of antivirals, antibiotics of various stripes, opiods/benzos (for calming mast cell activation), modafinil, enbrel...

retrial of amantadine/memantine, nortriptyline, Viagra, boswellia, FMT (starting with Viome testing), stellate ganglion blocks, testosterone and pregnenolone supplements, PEA, BPC157, Celebrex, increasing my Deplin dose, and perhaps trying sublingual LDN. Oh, and continuing...

...all the structural stuff I've been doing. And apparently based on the article @CortJohnson posted, maybe plasmapheresis (?). And maybe whatever Dr. Patterson is doing? That's just the A list btw🤣.

Daily Life: Most of my time is spent resting (napping, lying in bed, sitting downstairs or outside), hanging out with my parents (who I live with), reading the internet and watching shows, texting with, talking with, and sometimes seeing friends & fam, and...

...the most time-consuming: constant medical appointments and related administrative tasks (dealing with insurance companies and getting blood tests and figuring out medications and researching treatments...). And just regular life errands.

Anyways, that's it! Just wanted to give everyone interested an update on where I'm at in treatment and in life -- I'm open to any questions or alternatively any advice and thoughts you might have on treatments, etc. #me #pwME #neisvoid

cc: @Be_Kinderr @Davemconte @JanetDafoe @sarahbrodsky @julierehmeyer @hortonrachel_ @Dakota_150 @sonya_lala_ @meghanor @margmiley @DafoeWhitney @KatyBruce108 @EdMarkey @HannahRRice @TaylorLorenz @jayletay @exceedhergrasp1 @drclairetaylor @karinfriederic @twoShaws @MEcfsMom

@ABrokenBattery @AnilvanderZee @oslersweb @BatemanHorne @JeffLubell_C19 @kathrynsbach @aboutmecfs @LongCovidAdvoc @ahandvanish @EricTopol @LongCOVIDPhysio @itsbodypolitic @fi_lowenstein @dianaberrent @doctorasadkhan @DocZing @Survivor_Corps @JosGilbertoMon1 @SarahOC_MECFS

@CaroleBruce17 @RuhoyMD @benh_mecfs @cazzachr @kathrynsbach @RobJonesME @asktheallergist @Steigerecon @christina4hope @C19LH_Advocacy @DrEReinhold @tracieawhite @Rivkatweets @MelindaWMaxwell @spiral_guide @hortonrachel_ @ThereseARus @CfSforMECFS @krisfobes @MBVanElzakker

@microbeminded2 @jessicaslice @DouthatNYT @NINDSdirector @akaemilo @jenbrea @jeff_says_that @daisy_court75 @claudiamcarrera @PKhakpour @DrMaureenHanson @LBatemanMD @olgakhazan @jspotila @brianvastag @OpenMedF @rndNumGen @MEActNet @jifoulger @CortJohnson @MassMECFS @PlzSolveCFS

Sorry for all of the tags -- just wanted to get the conversation started about different treatments people are trying and don't know all the hashtags!
#MyalgicEncephalomyelitis #MyalgicE