Thread by @meighanstone

For other #LongCOVID folks, I’m nearing end of COVID reinfection acute phase & thought I’d share my experience & some resources for other chronically ill or disabled folks. This COVID reinfection has been a rough ride– this new variant took me down fast, hard & severely. 1/x

#1: DON'T TRUST ABLE-BODIED PEOPLE WITH YOUR HEALTH WITH THIS SURGE & VARIANT. Dear friends let a sick & symptomatic person join a 10-person holiday celebration, despite knowing I’m immune compromised with Long COVID. Me & my son got COVID after always masking the last year. 2/x

The practical, human cost of current COVID disinfo or lack of awareness? It makes good people believe political talking points instead of lived experience of disabled & chronically ill people they care about. NOW MORE THAN EVER-- they just can't understand your health risks. 3/x

#2: GET PAXLOVID IN ADVANCE, ASAP: I tried & didn’t hear back for 2 DAYS. Pharmacy didn’t fill for 2 MORE DAYS due to staffing–-so 4 DAY DELAY, despite studies show must start ASAP for best outcome. Thankfully, used my emergency Pax & was backup refill 4/xTest2Treat.org

Plan NOW for overburdened US healthcare system to not work, at any level. Treating COVID no longer prioritized as pandemic “is over” to win election, so if sick or disabled, you’re on your own. Unapologetically Google for photo of positive test to get a Rx in advance NOW. 5/x

#3: BE PREPARED TO HAVE TO FIGHT TO GET PAXLOVID: A maskless urgent care doctor wondered if I really “needed Paxlovid”, after me telling them I’d been disabled by Long COVID for over a year, had asthma & met several other CDC criteria! Prepare now to be calm, clear & tough 6/x

What conditions qualify for Paxlovid that your doctors may not know? Being “overweight”, ADHD, asthma, depression, learning differences, variety of disabilities: YOU QUALIFY. Here’s CDC list link, be ready to print out & bring to doctor appt or email:
7/xcdc.gov/coronavirus/20…

If doctor initially denies Paxlovid, be ready to say something like: “Thanks, can I ask you to then specifically write in my chart that you denied my formal request for Paxlovid, despite my meeting CDC “high risk” criteria?” Be firm, calm & repeat concerns as much as needed. 8/x

#4: GET METFORMIN IN ADVANCE, ASAP: I didn’t get in advance & regretted it. Very tough to get, but why? As FDA hasn’t approved this use, despite studies with up to 60% reduction #LongCOVID, most doctors know nothing about it. I offered Lancet study & doctor still wouldn’t Rx. 9/x

My maskless Urgent Care doctor knew NOTHING about #LongCOVID as “just starting to hear about it” so knew NOTHING about Metformin protocol. Link to Lancet study here, still print it out & bring to appointment to try: 10/xthelancet.com/journals/lanin…

Be ready to try a telehealth service for Metformin Rx, I used Sesame as more affordable than Plushcare. If anyone needs name of specific clinician to get Metformin, feel free to DM. You’ll need to be ready to share protocol Rx details with them, which some confusion on, so...11/x

For #LongCOVID #Metformin Rx, I made a little Google doc from Lancet study:

Rx is 36 pills, 500 mg each
14 days total, dose titrates up over 6 days:
Day 1: 500mg
Days 2-5: 500mg 2x daily
Days 6-14: 500mg AM & 1000mg PM

Sharing Google doc if helpful: 12/xdocs.google.com/document/d/1VT…

#5: USE CPC MOUTHWASH & NASAL SPRAYS THROUGHOUT ACUTE INFECTION. I used these before & after infection to keep viral load down, 3x per day. I believe this kept my bad acute case from getting even worse, promising data in studies like this one: 13/xpubmed.ncbi.nlm.nih.gov/34282982/

If you need tips on nasal spray options, like Enovid (can get on Amazon & other places) or Colloidal Silver (found at local Vitamin Shoppe in a pinch), can check out this article from (very expensive so I can’t go there myself) #LongCOVID clinic RTHM:
14/xrthm.com/articles/youve…

If you’re also confused about what “CPC” mouthwash is (I sure was), stands for ingredient called “Cetylpyridinium Chloride”. You can get it right now OTC, in most stores. As example, I got Crest Pro-Health Advanced Clinical for under $10, used 3x day to keep viral load down. 15/x

#6: BE PREPARED TO GO TO AN OVERCROWDED, MASKLESS HOSPITAL ER. I had updated Novavax boost, Paxlovid start Day 1 & still had to go to ER. My first symptoms were GI & by day 4-5, I couldn't keep any food, water, or meds down at all. I need IV fluids & meds, Zofran for nausea 16/x

Make a plan *NOW* for possible ER visit, if needed. Figure out which hospitals are most accessible, affordable, how you or caregiver will check wait times online or by phone. Check if they have mask mandates again or not. If single, like me, line up safe ride in advance NOW. 17/x

When I went to the ER, I was treated by maskless ER doctor. After telling her I had active COVID, she still didn’t mask– and went to the next room with very sick, elderly people. Doctors are not taking precautions & there’s a very high chance you leave ER with RSV or Flu too 18/x

Pack a little ER “go bag” now, with N95s for you & caregivers. Don't risk having to stop treatment or give up & leave ER because FULL OF VERY SICK, UNMASKED people now with easily communicable diseases. There was a real chance I’d have left sicker for needing emergency care. 19/x

#7: BE READY TO HAVE COVID MINIMIZED AT ER: My maskless ER doctor didn’t know CDC Paxlovid guidance. Be ready to calmly & firmly repeat you're high risk. Zero awareness in hospitals now, I left a JOHNS HOPKINS network ER with instructions on...handwashing to reduce COVID? 20/x

#8: LASTLY, IF NEED ANY HELP, ASK DISABLED & CHRONICALLY ILL COMMUNITY: If can’t find Paxlovid, need a friendly telehealth referral or mutual aid, tag folks or hashtags online & ASK FOR HELP. My gratitude to everyone who helped during my reinfection! We stay safe together♿️ 21/21

Forgot a last one! #9: DEMAND A PCR TEST. Why? If you do get #LongCOVID, many research studies only accept you if PCR CONFIRMED CASE. Rapid tests just 40% accurate on a good day! If your future health depends on getting into a study, be ready with that PCR positive result. 22/22