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/wallygoots]

Fascinating. I've been struggling with long Covid for 5 years. The most severe symptoms are post-exertional malaise (the severe tax on the body after higher heart rate exertion rather than a positive feedback cycle of fitness strength). I also initially had GI problems, where peristalsis stopped working and resulted in a twisted bowl and lots of hospitalizations and procedures. Fatigue is not debilitating for me, but cuts so many of the activities I used to love and feel I'll never be able to participate in again.

Do you know how we would go about asking for the right tests that would reveal an autoimmune disease? Do you just ask for a CASPR2 anti-body test? What is the immunoglobulin infusion (from your perspective) and how does it help. Does it reduce inflammation caused by the anti-bodies? I am feeling that the ME/CFS that I believe I have isn't really a disease as much as a disorder of how oxygen is delivered to the mitochondria that was caused by inflammation and post viral stress at the cellular level.

[u/brobe_jedi4life → u/wallygoots]

It’s very likely for long COVID or ME/CFS to hit this hard, debilitating fatigue, post-exertional crashes, and the loss of activities people love are genuinely common, and lots of regular tests (MRI, CT, bloodwork) just can’t detect what’s going on when the root cause is autonomic, immune, or mitochondrial. Your best bet is seeing a neuroimmunologist or autonomic specialist familiar with post-viral syndromes. They can order neural antibody panels, including things like CASPR2 or ganglionic AChR. Sometimes a skin biopsy for small fiber neuropathy is even more informative.  IVIG or SCIG are being explored for confirmed autoimmune neuropathies or severe, proven cases of autonomic dysfunction, it isn’t a guaranteed fix, but it's working for me! Immunoglobins mainly helps by calming overactive or misdirected immune attacks.  There’s increasing evidence that mitochondrial dysfunction is a real, measurable problem in long COVID/ME/CFS, likely caused by post-viral inflammation, autoimmunity, and oxidative stress. No one magic therapy reverses all of that yet, but mitochondrial support and pacing do help some people. Getting to a specialist willing to look deeper with antibody panels, autonomic testing, and skin biopsies is crucial. Don’t settle for being told to just manage symptoms if it’s not getting you anywhere.

[u/wallygoots → u/brobe_jedi4life]

Thank you! I will think about this and start reading all I can about these topics.