Thread by @pamelarbishop

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/

Low-dose naltrexone for fatigue/brain fog, POTS/dysautonomia, and MCAS, starting at 1.5mg capsule daily (given vivid dreams already) uptitrating every 2 weeks or as tolerated to 4.5mg; if significant side effects do occur at 1.5mg, can use liquid form to start at 0.1-0.5mg and 3/

uptitrate as tolerated. Fludrocortisone to improve fluid holding for POTS/dysautonomia, 0.1mg (range 0.05-2mg as tolerated), with consideration of midodrine 2.5mg up to 10mg every 4 hours as needed during the day before activity and/or pyridostigmine 30mg up to 60mg 3 times 4/

daily as next steps. Low-dose aripiprazole for fatigue/brain fog and sensory sensitivity, 0.5mg up to 2mg. Dextromethorphan for PEM envelope extension, 15mg available over-the-counter/online. 5/

for #MCAS ketotifen 1-2mg nightlyor cromolyn sodiumfour times daily before meals and bedtime. keep Plasmalogen on board, potentially keep nattokinase on as well.

For endothelial dysfunction: arginine 1.5-2g and vitamin C 500mg twice dailymay be helpful. We also talked 6/

about oxaloacetate 500mg-1g which shows promise for PEM envelope extension but tends to be cost-prohibitive.

Additionally, #CCI/tethered cord is suspected but not confirmed as Mayo does not have anyone who specializes in that area. So that's a medical odyssey for another day. 7/

Finally, Mayo has a "long covid class" that I agreed to participate in. I think it is just going to be how to manage symptoms with lifestyle changes, but I'll update after I do the 12 week program. That is all I know for now. Good luck all! Happy to answer what I can. /END

To be very clear, I am not planning to take every drug listed in the recommendations. These are just potential paths forward. I will trial them as I see fit, under supervision of my PCP.

I fortunately have a Wonderful PCP who is willing to try just about anything. She just hasn't known what to try.