Was research professor, now disabled by #LongCOVID (12/7/20) & subsequent #POTS #MECFS #MCAS #SFN #cSVD Patient advocate when able. Tell your story if you can.
Mar 29 • 5 tweets • 2 min read
One last update as I think this will also be helpful for other patients to discuss w their drs. I asked about potential treatments for viral reactivation (I have reactivated EBV, CMV, and an enterovirus perthe Yale LISTEN study). My PCP has no idea what to do for it. 1/
Here was the advice from my Mayo dr (as always, check w your own physician): For viral reactivation, a study of interest right now is the Bateman Horne trial of valacyclovir + celecoxib: Research - Bateman Horne Center . However, with CMV being a potential driver rather than 2/
Mar 28 • 10 tweets • 2 min read
As promised, I am writing this post to share what the Mayo #LongCovid Clinic found on my recent visit. I have high inflammatory markers (CRP, IL-6, and TNF), so the dr wants to focus on lowering inflammation as a first step. She is recommending LDN for that. She believes 1/
that my positive (but short lived) response to HELP apheresis was due to removal of inflammatory molecules. I was also dx with small fiber neuropathy, endothelial damage, and reduced blood flow in my brain. These were the pharmacological recommendations: 2/
Mar 28 • 4 tweets • 1 min read
A lot of ppl have asked in my DMs what blood tests Mayo Clinic did for my #LongCOVID visit, so I'll list them here. I did not ask for any of these and don't know what a lot of them are, so pls speak with your dr if you have questions.
*ACTH
*CBC with Differential (Hemocrit, 1/
Hemoglobin, Erythrocytes, MCV, RCB Distribution Width, Platelet Count, Leukocytes, Neutrophils, Lymphocytes, Monocytes, Eosinophils, Basophils)
*Metabolic Panel (Potassium, Sodium, Chloride, Bicarbonate, Anion Gap, BUN, Creatine, eGFR, Calcium, Glucose, Protein, Albumin, 2/
Jan 8, 2023 • 5 tweets • 2 min read
Crowd sourcing for a friend: have any ppl w #LongCovid had a deep vein thrombosis that was completely resistant to treatment? Friend is in a very dire situation with a clot (now >3.5 ft long) that has been removed & come back twice in a matter of days. Drs stumped. Femoral artery
@WesElyMD@hmkyale@VirusesImmunity@calirunnerdoc
Nov 13, 2022 • 172 tweets • 57 min read
Tomrrw I leave my family for a mo to try #helpapheresis for #LongCovid. I know it isn't a cure & results vary & understand my privilege for being able to try it. But I'm going to give an honest, real-time account of it here bc so many are curious. Watch this space #TeamClots
Day 1: up @ 5AM thinking of all the things I shld do today before I leave. Realizing last night was our last fam dinner at home for a mo was tough. Hubs & kids so hopeful this will bring back some of the person I used to be. We all miss her. #LongCovid#HelpApheresis#TeamClots
