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.