Hello!
Your story resonates and hurts my heart at the same time. I feel your weariness deep in my soul.

I first had Covid in Nov. 2020, LC symptoms started in March 2021 immediately following my second dose of the Pfizer vaccine.
I have 26 (and counting) medical diagnosis due to my Long Covid. I was an active elementary teacher. I am now determined fully disabled by private insurance, my state and SSDI.

I also live in the Midwest and I am a part of the ‘three tiers’ of the Mayo system. I see providers at the Mayo clinic in my small community, the Mayo clinic and hospital in a nearby, much larger community, and Rochester.

I had a LC provider in Rochester through the CARP program, but he recently left the system. The Long Covid Clinic in Rochester won’t see me because my LC was diagnosed more than two years ago. I guess my LC is too long for them! I am still having active, new health issues due to my LC.
My providers in the ‘lower tiers’ of the Mayo system are also frustrated with this rejection and they are working very hard to help me. I know I’m exceptionally lucky.

I had to do three tilt table tests in the Mayo system, all with positive results, before the doctors in Rochester would recognize my POTS diagnosis. I am now 54, so I don’t match the “usual” POTS diagnosis.

I have hyperandrogenic POTS due to Long Covid.

I manage my POTS symptoms by taking a beta blocker, low dose naltrexone, getting a one liter saline infusion twice a week, wearing compression socks, taking in extra salt, practicing a strict pacing of daily activities, and doing simple exercises when I’m able.

PEM/CFS interfere with these exercises. I’m usually able to do a few exercises on my infusion days.

All of these treatments, and education on this illness, have made my POTS much more manageable than before using these measures. I still have breakthrough HR spikes that cause problems, but they are much less frequent.

I understand feeling like we ‘should’ utilize the Mayo system because they are supposed to be all that. In reality they are an advanced care facility, but not all that different from any other advanced care systems. (It’s taken me a while to be peaceful with this.)
I’ve been encouraged to seek care elsewhere for some of my very specific, uncommon issues.
Perhaps we should take that advice. It’s our life that’s on the line, we need to do the best for us.

I am going to see a new LC doctor this spring. Her name is Dr. Ruby Tam. She runs the ME/CFS Clinic Minnesota. Her clinic is free so everyone with ME/CFS, Long Covid, fibromyalgia, and other related illnesses can receive the quality care they need. I had a consultation phone call with Dr. Tam, my appointment is a five month wait. All of her appointments are online.
I don’t know if this clinic will be a good match for you, but maybe an option.
Hopefully some research into other facilities will help you make health care decisions that are the very best for you.
You deserve the best care and respect from providers.

Please feel free to ask me questions.

I’m wishing all the best!
Christine