← Return to POTS, Pre- or Post-COVID: Where did you find treatment and what helps?

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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!

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Replies to "Hello! Your story resonates and hurts my heart at the same time. I feel your weariness..."

Hi Christine- Thank you so much for your kind note, for sharing your story, and for the encouragement.

Dr. Ruby Tam’s clinic sounds amazing. I took a look at her website and just knowing there’s someone out there like Dr. Tam and her team who want to volunteer their time for people with complex cases like ours lifts my heart up a bit. I don’t have CFS, so I don’t think I’d qualify to be seen at her clinic, but I’m still glad to know it’s out there.

You’re right that Mayo may not be so different from other “elite” medical systems…or at least maybe they’re not immune to the same bureaucracy, blind spots, and limitations that exist at other places. Between the fancy commercials, the strong culture there, and even on these forums reading people saying they’d “walk across cut glass” to get into Mayo, honestly it’s hard not to wonder what I did “wrong” to have a negative experience and get turned away. Mayo “should” have come through for me, especially after I already got there (or that’s the thought in my head) and it’s hard to make peace with knowing they didn’t. Sometimes it’s easier to blame myself…just like with your long COVID being “too long” >_< . Crazy.

It still hurts and hopefully I’ll get to the point soon where I can feel more at peace with it like you said.

My neurologist feels strongly he could connect me to the POTS Clinic at Johns Hopkins (Dr. Tae Chung), so if he wants to help me, I should let him help me. And maybe with this referral…maybe he’ll be an even better fit for me than the neurologist at Mayo.

I take LDN as well. May I ask what dose you take?

The strategies you mentioned remind me that I can redouble my efforts with fluids, salt, and slowly getting back into my strength training program. The fatigue and central sensitivity slows my ability to progress, like you mentioned. But I can keep trying if it helped before.

I hope your appointment with Dr. Tam goes well and I’m wishing you all the best too. Thanks again!

Hi Christine, I am in Minnesota and wondering if you could please send me the information on Dr. Tam and her clinic. Phone number and location and how do I get into this clinic. I have Long Covid and just got out of the hospital last night after passing out in my driveway on sunday and falling flat on my face. My angel was watching out for me , as the worst of my injuries is I fractured my nose in two places and my facial battle scars. Thank heavens for my n95 masks..so I can cover it up. I have POTS / Orthostatic Hypotension, they figure that is why I passed out and fell. Any info would be helpful. Colleen Young forwarded this information on this Connect site. Hope you are ok..prayers and hugs for you. Sincerely, kitty2..alias Sue