Courtney🤸♀️ WyrtzenI've managed to string together some sustainable recovery from #LongCovid after 29 months of debilitating symptoms. It's been a multifaceted and complex journey. At month 14 I was hopeless & barely functional. Step by step, I've gotten some life back though nothing is the same. Hoping to connect with other #pwLongCovid #AMA @longcovid
Tim Gent@ItsJustCty @longcovid that's great to hear. What would you say is the biggest influence on recovery? Pacing, medicine, attitude or just time to recover?
@tgent_fens @longcovid Pacing has been huge but to even be able to figure out pacing I had to go on a strict Low Fodmaps, NO Histamine diet (this allows for only about 16 foods). Then, with that little bit of relief from body aches, I did 3 mos of in-home physical, speech, occupational, and neurological therapy (I had to take leave from work for this, thank you #CARESact), then building sloooowly from there some important med interventions (will private DM this), after EECP *huge* improvement.
@tgent_fens @longcovid THat is the bare bones summary of my sustained recovery from #LongCovid , lots of stops and starts along the way. I mask up against #COVID and #Allergens because of #MCAS. I AM in a #LongCovid clinic & have insurance, this helps a LOT.
Sharrow_irl@Sharr0w @longcovid no one is on board with my #MCAS dx except my #LongCovid clinic doc. Allergist blew me off, Primary is not interested, Pulmonologist just wants to focus on lungs, Cardiologist is like, oh well and so on. [I tried to google it but what is #dea?]
@ItsJustCty @longcovid sorry typo drs
@Sharr0w @longcovid oh got it, yes. I put #MCAS on all of my paperwork (forgot to mention neurologist and endocrinologist!) & they just don't know about it. Yes, NAD+ is in my arsenal along with H1 and H2 meds round the clock (antihistamines), and #LDN and some other stuff I can DM privately.
@ItsJustCty @longcovid everything with me lines up with #MCAS on top of everything else. NAD+ supplement has made a big difference.
@Sharr0w @ItsJustCty @longcovid I'm wondering if it's possible on this group to start at list of treatments people have had, what symptoms they address, what success and where available. Is that a good idea? Would prefer to check with experts it's not been done / would be legit thing to do. Thoughts? #LongCovidTreatments
@tgent_fens @ItsJustCty @longcovid I would reccomend the #LongCovid Handbook https://www.amazon.com/Long-Covid-Handbook-Gez-Medinger-ebook/dp/B09VKJ7W4P
vicyarri@tgent_fens @Sharr0w @ItsJustCty @longcovid I’m new here, but a pharmacist with long covid @LongCovidPharmD has done tons of work on this, previously posted on the 🐦 place, has been massively helpful to me and others.
@tgent_fens @longcovid Re-reading my posts I see I got some things out of order, ugh #LongCovid #brainFog, the timeline jumbles in my brain but the milestones are solid, just timing! #pwLongCovid #pwLC #COVID19 infection in June 2020, no hx, don't remember 1st 3 months, could not get ANY doctor (except one curious pulmonologist #thankful) to help until August 2021, #LongCovidClinic only then was I able to turn a corner at all and OT/PT/ST + critical rx internevtions was that fall 2021.
@ItsJustCty @longcovid thanks. I'll look through this. 5 months in myself and quite a bit I still need to read up on!
@tgent_fens best wishes, and go as slow as possible! Take care.