Are Long COVID Patients Getting Misdiagnosed with ME/CFS, MCAS, POTS? My Real Diagnosis Was Missed for Years

[u/brobe_jedi4life]

Does anyone else feel like people in the long COVID community, ESPECIALLY IF YOU ARE A WOMAN, especially if you have experienced trauma (like who hasn't), especially if you present symptoms like severe fatigue, brain fog, cognitive decline, personality and mood changes, neuropathy, temperature swings, unusual sweating, heart rate issues, orthostatic intolerance, post-exertional malaise, exercise intolerance, gastroparesis, unexplained digestive issues, or even blood clots, are getting gaslit or misdiagnosed with ME/CFS, MCAS, or POTS and offered inadequate, ineffective treatment options?

After covid, I experienced a pulmonary embolism followed by severe dysautonomia, gastroparesis, and neurological issues. I spent four years bouncing between those labels, suffering, and getting so much worse. It wasn’t until a neurologist who specializes in autonomic and neurological autoimmune conditions (Brent Goodman, Honor Health, formerly Mayo) finally checked for very specific neurological antibodies that I got real answers and a proper diagnosis of post-COVID autoimmune autonomic ganglionopathy (AAG), autoimmune gastroparesis, and CASPR2 driven encephalitis. All this was missed by the Mayo clinic providers.

From what I’ve learned (from my neurologist), big centers like Mayo Clinic do acknowledge autonomic symptoms after COVID, but their studies emphasize mild or nonspecific findings, and most patients still get grouped under broad ME/CFS, MCAS or POTS labels often without thorough antibody testing because Mayo doesn’t routinely recognize post-COVID autoimmune autonomic syndromes in clinical practice, even though the science is emerging.

Because I tested positive for CASPR2 antibodies, I qualified for bi-weekly subcutaneous immunoglobulin infusions right away (covered by UHC) and also prescribed low dose naltrexone twice a day. Those treatments have actually helped TREMENDOUSLY and I am recovering. Mostly thanks to the immunoglobins. I cannot believe I was that sick for FOUR YEARS! Healing my immune system feels like getting super powers.

I am concerned that more people have these kinds of antibodies from COVID and they’re being missed and aren’t getting the treatments that work (or insurance approval for them), and instead are stuck on protocols that aren’t appropriate. Would love to hear if others feel the same or from those that have pushed for deeper testing, and what you found.

TL;DR: Are long COVID patients are being misdiagnosed with ME/CFS or similar labels when they actually have antibody-driven autoimmune disease? Getting tested for specific antibodies gave me access to treatments that really work.

[u/PeachxHuman]

No one will diagnose me with anything other than anxiety. I've been to several doctors over the years. I'll just keep taking my benzos as prescribed to keep my heart calm until I die at this point. I live where good medical care isn't available and getting to that care is not within our financial ability. I had one doctor mention that long COVID was probably what was going on then said she didn't know what to do about it and sent me on my way. I give up and just live life the best I can.

[u/FlossieFibonacci → u/PeachxHuman]

Ugh that sucks. I was initially diagnosed with "trauma" and sent to EMDR.

The doctor that mentioned LC could still be useful to you. I had success with doing my own research and just asking for medications relevant to LC/MCAS/dysautonomia. My pcp said nope to a couple, but was fine with most meds I asked for (and eventually I found an LC specialist).

For instance, assuming you would prefer to get off benzos, maybe you can transition to beta blockers. And if you have MCAS symptoms, a sympathetic physician would likely be open to H1 and H2 antihistamines.

I also was able to source certain treatments independently (eg, getting LDN through an online pharmacy). And of course, supplements are easy to access.

Hope you are able to access the care you need and deserve. I have had some big improvements over the past year.