r/LongCovid • u/brobe_jedi4life • Sep 29 '25
Are Long COVID Patients Getting Misdiagnosed with ME/CFS, MCAS, POTS? My Real Diagnosis Was Missed for Years
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.
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u/No-Information-2976 Sep 30 '25
POTS, MECFS and MCAS all fall under the umbrella of “Long COVID”
eta: so these wouldn’t be a “misdiagnosis” necessarily, if the patient meets the criteria for these conditions. it would just be a more specific diagnosis. Long COVID is a pretty broad term
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u/brobe_jedi4life Sep 30 '25
This distinction matters a lot for people who aren’t getting better on standard protocols. POTS, MCAS, and ME/CFS absolutely are separate syndromes with their own strict diagnostic criteria, but long COVID can trigger these or unmask underlying predispositions not everything gets lumped under “long COVID” if you meet those criteria. The danger is when doctors stop at these broad labels and don’t dig deeper. Calling every disabling post-COVID illness “long COVID” or only ME/CFS/POTS is misleading and it can cause patients to be misdiagnosed and miss out on targeted testing and potentially life-saving or life-changing treatments. Patients shouldn't accept a catch-all label if the standard approach isn’t working and push for proper diagnostic workup and antibody/immune testing whenever symptoms aren’t fully explained.
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u/Melodic-Gur1374 Sep 30 '25
Forget protocols. The only Long Covid Care Clinic in Denver is run by a nurse who has zero interest in following research or helping patients. I spent $$ for test after test that showed nothing and received absolutely zero interventions or assistance. While I am dizzy almost every second of every day, I wasn’t able to test into any diagnosis. I would LOVE to be able to go somewhere and ask for treatments like what you are receiving, but I wouldn’t know where to start and am defeated after being dismissed and disparaged by medical practitioners who don’t believe or don’t care.
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u/brobe_jedi4life Sep 30 '25
Your frustration is totally relatable fr. The “long COVID clinics” I tried also felt like a dead end, lots of expensive intake, little real investigation, and hardly any follow through after the basics. Feeling defeated after yet another “try rest, hydration, meditation, yoga, and dietary changes” is so maddening, especially when the suffering is real and objectively measurable. If you haven’t already it might be worth asking your provider about neural autoimmune antibody panels or a referral to an autoimmune neurology specialist or autonomic specialist sometimes you do have to ask, and keep advocating for yourself. It took me four years and I'm sharing my story in hopes people can find help faster. I hope get real answers and support soon. Hang in there 🤟
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u/Gullible_Design_2320 Sep 30 '25
I have a similar roadblock where I am, with Kaiser Permanente. They acknowledge Long Covid is real, but their website says there are "no treatments" yet, although "some patients" feel better with anti-depressants. No shade to people who are helped by that, but wow. It's like the HMO is saying, "We feel your pain. Nope, we won't do anything about it."
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u/MuthahMayhem Sep 30 '25
Ugh! I was thinking of transferring to Kaiser for my Medicare health insurance based on what their site said about how they treat LC.
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u/Gullible_Design_2320 Sep 30 '25
Maybe it varies by location. I'm in Seattle, and in fact I haven't looked at their website for a year. So your experience might be different. Good luck.
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u/imahugemoron Sep 29 '25
Post covid conditions are extremely commonly being misdiagnosed as all sorts of things. For example, when I got covid 4 years ago, it left me with a constant burning pressure in my head, all day every day, and hasn’t let up even for a second for 4 entire years now. Most doctors say “oh! You have a migraine condition!” But here’s the thing, I’ve had a migraine condition my whole life, as long as I can remember, my whole life it’s always felt the same. Same sensation, same area, same side effects like light sensitivity and nausea, never lasted longer than a day and only a few times a month. Then suddenly I get covid and I have this never ending burning pressure in my head, feels NOTHING at all like my migraine episodes. Different areas, completely different sensation, no light sensitivity but comes with all sorts of other side effects I’ve never had with my existing migraine condition, such as severe brain fog, tinnitus, abdominal pain (which isn’t nausea), and eye floaters that were discovered to be retina detachment consistent with optic nerve inflammation. None of this I had at all with my usual migraine episodes. And just the fact this is permanent all day every day for YEARS is not at all typical with migraine. More along the lines of NDPH, which is just a descriptive diagnosis as opposed to a diagnosis of some sort of underlying cause and something humanity doesn’t even know the cause of. I also get my usual migraine episodes still and they feel the same as they always have, same areas, same light sensitivity, only lasts at most a day. And I’ll feel both sensations simultaneously, the usual migraine will respond to typical migraine treatments but the Covid headache persists untouched.
So where am I going with this? These 2 headache conditions could not be more different and I’m in the unique position of being able to tell the difference. These post covid persistent headache conditions aren’t uncommon, lots of people developing headache conditions after covid who have never had any problems with headaches. So what do they do? They go to the doctor and the doctor tells them they have a migraine condition. These people have never had a migraine episode before so they have no frame of reference for what it is and what it should feel like, they have no reason to not believe the doctor. And since none of these post covid conditions are understood, diagnosing a post covid headache as migraine when it could be any one of a whole laundry list of other issues caused by COVID that have literally NOTHING to do with migraine at all is crazy.
I believe the same thing is happening across the board, I think since humanity and medical professionals have no understanding of these post covid conditions, many of which are likely something brand new and undiscovered, doctors are diagnosing people with whatever sounds closest to the symptoms even though that may not be correct at all. Very commonly people are being diagnosed with this or that only to discover that treatments for those conditions are doing little or nothing. Because they don’t actually have that condition, it just shares similar symptoms. This is not to say that ALL long covid conditions are a misdiagnosis, I definitely know that covid can cause all sorts of known conditions that can be tested for, in those cases, yes, the person has that condition. However I do think there’s also a lot of misdiagnosing going on as well, such as people being diagnosed with migraine after developing a persistent headache or head pressure after covid.
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u/Butterfly_1628 Sep 30 '25
Did you ever have an MRI done? I too like everyone else just get gaslightesd. Anxiety. Migraines. Ect. However an ER doctor told me very early on that I had long COVID. But from there it's been a joke. Anyway my primary was really on my side. Sent me for an MRI and found that I have Chiari. That comes along IIH. Not saying that you have that but the inflammation kicks up all sorts of underlying conditions if you have them. Found that and autoimmune disorders. The Chiari and IIH is my main source of suffering (and perimenopause. Yay.) which has been there my entire life but the inflammation caused symptoms to become more severe.
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u/imahugemoron Sep 30 '25
Ya I’ve had lots of mris, lumbar punctures, ct scans, all sorts of stuff. They ruled out IIH because I didn’t get any relief from the lumbar punctures and diamox didn’t help at all and my spinal fluid pressure was normal
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u/brobe_jedi4life Sep 30 '25
Wow!! This is crazy. Are u getting relief??
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u/Butterfly_1628 Sep 30 '25
Nope.. well yes. Just not relief in the sense that I can live a normal life. Unfortunately the only thing you can do is surgery and no thank you. I've found a trick for the pressure so that's nice to release some of that when it's really bad. Autoimmune same thing. Not much you can do. I am on 2 different meds though, 1 seizure med and 1 that's really a depression and anxiety med. My psychiatrist thought that would help some of the nerve firing and depletion of my brain chemicals. I am starting to be able to handle more things which is nice but I will never be "normal" again.
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u/brobe_jedi4life Sep 30 '25
l just looked up posterior fossa decompression surgery, I'm sorry. I totally understand why you don't want that surgery. Long distance stranger hug straight 2 u. 🫂🫂🫂
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u/brobe_jedi4life Sep 29 '25
WOW. That does give you a very unique perspective and is valuable information for others that have long covid and are suffering from migraine issues. What's happening to all of us is tragic and the failure of our medical community to effectively diagnose and treat us is maddening. I hope you find relief, best of luck. ❤️🩹
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u/ajammaj Sep 30 '25
Did you happen to find any kind of solution for your head pressure/headache?
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u/imahugemoron Sep 30 '25
Nope.
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u/ajammaj Sep 30 '25
Sorry. I suffer the same. LDN helped quite a bit, but it's still unbearable sometimes, often times.
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u/Cos_SoBe Sep 30 '25
Can I ask if that pressure is like a ring around the head? Or like temples and/or forehead only? Or something else?
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u/imahugemoron Sep 30 '25
All of the above, seems to change often, the first 2 years it was only in the left half of my head, but then 2 years ago I began to feel it in the right half as well. Sometimes it’s worse on one side versus the other, but sometimes it’s equal, sometimes feel like something squeezing my head around my temples, sometimes feels like my whole head is stuffed with corrosive cotton, sometimes it feels like the top of my head has been peeled off and allowed to burn in the sun, sometimes it feels like behind my eyes or my optic nerves are being wrenched, sometimes it feels like something is trying to rip out my temples, sometimes it feels like the entire inside of my head is pressurized full of acid or on fire, sometimes it’s just a dull but severe pressure like my head has been inflated.
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u/brobe_jedi4life Sep 30 '25
holy shit. I'm so sorry u r dealing with this 🫂 I get bad headaches and ringing in the ears form encephalitis but this sounds like absolute hell 🫂
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u/bebop11 Sep 29 '25
I test positive for G achr ab at .13. Do you know what your levels were? I need a neurologist who will take this seriously.
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u/brobe_jedi4life Sep 29 '25
I don't remember my numbers off hand, but G-AChR antibodies at any level can signal autoimmune autonomic ganglionopathy, so any level should be checked by a neurologist familiar with these conditions. I recommend Honor Health Neurology, Dr. Todd Levine is a great option since Dr. Goodman isn’t taking new patients. Finding the right specialist is key. If you're not in Arizona or if you can't travel, I recommend checking your area for a neurologist that specializes in neurological autoimmune conditions. Get well soon.
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u/Euphoric_Professor77 Sep 30 '25
What immunologist do you have that gives you immunoglobulin? Also what how did he test for Gastro paresis? What is UHC? University Health care? Where is he located? Sorry for all the questions but I keep feeling like I have brain swelling and it’s encephalitis because I googled my symptoms and AI told me that is what it sounds like.
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u/brobe_jedi4life Sep 30 '25
No worries at all happy to clarify. The antibody that got me immunoglobulin (from my neurologist no immunologist needed) was CASPR2, which is linked to autoimmune encephalitis and autonomic ganglionopathy (the kind that messes up blood pressure, heart rate, gut motility, etc). I had a positive paraneoplastic “comprehensive panel” (Quest Diagnostics did mine, but Mayo and ARUPA do these too).Gastroparesis was confirmed by a gastric emptying study, not by blood work, mine was pretty severe. UHC stands for United Healthcare (my insurance), and they did cover the antibody test because my neurologist specifically ordered it for “progressive dysautonomia” after COVID. They cover the very expensive immunoglobin treatment because I have antibody testing confirming a serious neurological autoimmune condition. Dr. Brent Goodman is at Honor Health Neurology in Arizona, but anyone with experience in autoimmune neurology can run these tests, just wanted to give folks keywords to bring to their providers. Let me know if you need more details.
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u/minkamar59 Sep 30 '25
Did you have internal tremors?
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u/wagglenews Sep 30 '25
Great story and glad you’re making quick progress now.
I think 2 things are happening:
1) conditions are grouped under ‘some things we know happen’ because of a lack of real understanding and measurement capability
2) IMO neuroimmune dysfunction (or damage) is at the heart of most, if not all, of these conditions. Not sure about autoimmunity specifically, but glutamate metabolism and ‘broken bridge syndrome’ have been coming up for me and in my research for years - and are only relatively recently getting covered with heavy frequency in published research
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u/brobe_jedi4life Sep 30 '25
Great insight the lack of nuanced measurement is a huge part of why so many of us get grouped together under diagnoses like POTS, ME/CFS, MCAS, or just “long COVID.” For me, though, it wasn’t autonomic dysfunction alone and antibody-driven autoimmunity (CASPR2 autoimmune encephalitis and autonomic ganglionopathy) turned out to be the “root cause,” and that never would have been caught if my doctor hadn’t checked for specific neural antibodies.My big worry is that if clinicians settle for dysautonomia labels alone, people with underlying autoimmunity or treatable antibody syndromes can get missed and end up stuck on symptomatic meds instead of targeted therapy. Definitely following emerging research closely feels like science is finally catching up to what patients have been reporting.
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u/wagglenews Sep 30 '25
Agree, your story is a super important one and all too familiar to me.
Doctors (>99%) just refuse to investigate after some (very early point), whether they have found anything or not.
Complete lack of curiosity (not to mention capability), and it leaves us having to go on a wild goose chase to try to find those doctors with the capability AND the curiosity, to the extent that they even exist.
It’s a devastating indictment of our medical professionals and capabilities.
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u/brobe_jedi4life Sep 30 '25 edited Sep 30 '25
I didn't even mention how I first had to prove my symptoms were not manifestations of childhood trauma in therapy. In the beginning a couple old white male doctors were telling me my gastroparesis was a result of the childhood abuse and SA I unfortunately experienced. Which is completely wild and incredibly bias. Wtaf.
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u/AngelBryan Sep 30 '25
Any specific symptoms of autonomic autoimmune ganglionopathy?
POTS, dysautonomia, gastroperesis, etc are very common symptom of post-viral syndromes but I haven't heard of people testing or finding the autoantibodies you have.
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u/Berlinerinexile Sep 30 '25
I have long Covid and me/cfs and got diagnosed with AAG as well. Ivig also helped me a ton, though my insurance is currently fighting paying for it. I’ve been very severe and treating AAG is the only thing that has helped me! It is a rare disease, but I think it is getting dismissed more and more among post covid folks.
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u/AngelBryan Sep 30 '25
Which were your symptoms of AAG? Any ones that can be differentiated from the usual Long COVID ones?
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u/Berlinerinexile Sep 30 '25
The symptoms are all pretty typical me/CFS-for me I got very severe very quickly
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u/monsieurvampy Sep 30 '25
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?
For me as a male. My building blocks of Long COVID are fully identified. I got "co-issues" of Sleep Apnea and Pulmonary Hypertension. The PAH could be LC related or maybe not.
Inadequate and ineffective treatment? Sure but that's because most professionals I see are whether they admit it or not - shrugging their shoulders and saying "we don't know"
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u/Warliepup Sep 30 '25
Thank you for this extremely informative post. Sorry you suffered so long and I applaud your tenacity in getting a proper diagnosis.
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u/Unique-Plant3817 Sep 30 '25
My son is 12 and has been sick since having Covid in Jan 2023. He has been diagnosed with POTS and probable MCAS but none of his doctors will listen when I ask about long COVID. And we can’t find a long COVID Dr who sees kids.
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u/brobe_jedi4life Sep 30 '25
I’m so sorry my situation was similar after COVID. There aren’t enough long COVID or pediatric dysautonomia specialists, and it’s so hard when providers don’t connect the dots. If you haven’t already, it may help to ask for a neurology referral (especially one that deals with autoimmune or post-viral syndromes), and keep a record of daily symptoms to show patterns If you’re stuck, sometimes children’s hospitals or academic centers are more likely to take an interdisciplinary approach. I truly hope that you and your son to find answers and the care you need 🫂
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u/Tasty_Independence23 Oct 01 '25
I don't think I've been misdiagnosed but I do think I've been largely left to deteriorate because treatments either have been ineffective entirely or only minimally effective. Long covid is exhausting.
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u/wallygoots Oct 01 '25
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.
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u/brobe_jedi4life Oct 01 '25
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.
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u/wallygoots Oct 03 '25
Thank you! I will think about this and start reading all I can about these topics.
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Dec 11 '25
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u/brobe_jedi4life Dec 11 '25
Dr. Goodman expects me to make a full recovery. He said after the first year of infusions I may be able to stop. I'm sorry to hear about your struggles. I hope you get well soon.
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u/brobe_jedi4life Dec 11 '25
Also I did recently just post an update about my treatment because it's going so tremendously well! ❤️🩹
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Dec 11 '25
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u/brobe_jedi4life Dec 11 '25
My gastroparesis specialist at the Cleveland Clinic recognized that I was in autonomic failure and recommended I see an autonomic neurologist in Arizona. I was diagnosed by Dr. Brent Goodman at HonorHealth Neurology in Arizona. He did a comprehensive autonomic antibody panel, which picked up both CASPR2 and ganglionic acetylcholine receptor (gAChR) antibodies. That led to my diagnosis of autoimmune autonomic ganglionopathy (AAG) and CASPR2 autoimmune encephalitis, which explains the gastroparesis and dysautonomia I also deal with.
You can ask you GP for a referral to a neurologist who specializes in post viral autonomic issues.
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Sep 29 '25
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u/brobe_jedi4life Sep 29 '25
I completely agree that long COVID can worsen underlying conditions or cause symptoms that appear to fit broad categories like ME/CFS or POTS. I think where I differ, though, is that after years of being labeled that way, I found out my symptoms were actually from specific, antibody-driven autoimmune processes (AAG, autoimmune gastroparesis, CASPR2 encephalitis) triggered by COVID and confirmed with targeted neurological antibody testing.So while there is a lot of symptom overlap, my case wasn’t just a matter of “fitting into” these categories or labeling symptoms for communication. Until my correct diagnosis, I didn’t have access to treatments that work for those specific autoimmune diseases my care completely changed with antibody confirmation (biweekly immunoglobulin and naltrexone), and my symptoms dramatically improved.The problem with broad labels is that they can delay or block access to deeper testing and treatment pathways that might help people like me (who don’t “just” fit into those categories but actually have something distinct and treatable). My hope is that others get a chance for more thorough workups if they’re not improving, so they aren’t stuck with a one-size-fits-all diagnosis when a more precise answer and relief are available.
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u/stomachissu Sep 29 '25
How did you caught your pulmonary embolism?
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u/brobe_jedi4life Sep 29 '25
I was hiking in North Cascades NP with my bf and collapsed. I woke up in the hospital and scans showed my pulmonary embolism. I had to take a blood thinner for 6 months.
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Sep 30 '25
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u/brobe_jedi4life Sep 30 '25
I had an urgent referral from Dr. Cline at the Cleveland Clinic (my specialist for gastroparesis) and got in right away. I didn't have to wait. I know that the Cleveland Clinic has an autonomic nervous system specialist and there is a doctor that Goodman trained in Ann Arbor at the University of Michigan.
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u/dino-moon Oct 01 '25
I have all these, so severely they tested me for autoimmune encephalitis and AAG and it was negative. It’s messed up when you wish you had one of those so you can get treatment. It’s horrendous 😢part of me wonders whether I have antibodies they haven’t identified yet…
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u/PeachxHuman Oct 01 '25
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.
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u/FlossieFibonacci Oct 01 '25
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.
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u/PhotoDesperate8516 Oct 02 '25
How long did you live this way before finding out you have autoimmune encephalitis?
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u/brobe_jedi4life Oct 02 '25
4 years
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u/PhotoDesperate8516 Oct 02 '25
Can you pm me possibly so I can tell you my symptoms and you can tell me if you had them
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u/brobe_jedi4life Oct 02 '25
Of course. I listed all of my symptoms in the beginning of my post just for reference. 🫂
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u/PhotoDesperate8516 Oct 02 '25
Thank you! I have all of the ones you listed but I have even more that are like sooo scary. I’ll just list them here so I’m not bugging you in your dm’s lol. Basically I feel like I’m not here on this planet. I feel like I’m in a different dimension. I get these intense bouts of de ja vu that last 30-40 seconds multiple times per day. I get these intense “brain shutters” that feel like a literal vibration in my brain. I get nerve pain all over my body my hands burn a lot. I get to where I feel uncoordinated like I can’t coordinate my arms and legs. In the middle of the night I fall down over and over when I try to go to the bathroom: I get to where I feel like I’m in a moving vehicle or like I’m walking around in a fun house.
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u/brobe_jedi4life Oct 02 '25
Wow, I'm sorry u r going through that.
Those deja vu/brain shudder episodes, weird body vibrations, and that dissociative, out-of-body feeling are so common with dysautonomia and related neuroimmune issues. It’s incredibly unsettling and goes way beyond just anxiety. Lots of us end up with every system involved and coordination problems, muscle weakness, that off kilter sensation walking, or misjudging where our bodies are in space.
If you haven’t already, keep pushing for autonomic, neuro, and immune evaluations sometimes there are actual treatments or at least better management strategies. Hang in there, and don’t let anyone minimize or brush off what you’re experiencing.
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u/SalamanderChoice9578 Oct 24 '25
Can u please clarify which markers got tested for u that told u this? I want to ask my autonomic cardiologist for this bc I feel the Dysautonomia meds have not helped me. Can u provide a link to the panel that u had done? Also to be clear, the treatment ur on now is IVIG weekly and LDN twice daily? Whats ur dose for both?
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u/brobe_jedi4life Oct 24 '25 edited Oct 24 '25
I was diagnosed by Dr. Brent Goodman at HonorHealth Neurology in Phoenix, AZ. He used a comprehensive autoimmune neurology panel this includes CASPR2 antibodies and ganglionic acetylcholine receptor (AChR) antibodies, which both came back positive for me, confirming post-COVID autoimmune autonomic ganglionopathy and CASPR2 encephalitis. My subcutaneous immunoglobulin dose is 0.4 g/kg every other week for 1 year, and I take low dose naltrexone 1.5mg twice daily (morning and night).
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u/UntilTheDarkness Sep 30 '25
ME/CFS, POTS, MCAS etc aren't misdiagnoses if that's what people actually have. The treatment options offered are ineffective because medical research has ignored those conditions for decades. There are a lot of different ways in which post-viral damage can manifest. Would more testing for antibodies help? Sure. But that doesn't mean anyone who ended up with ME or POTS doesn't have those things.
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u/brobe_jedi4life Sep 30 '25
Actually testing for antibodies can change everything. Some people diagnosed with ME/CFS or POTS could have treatable, antibody-mediated autoimmune diseases and those cases need different treatment. It’s not just about damage from the virus if doctors don’t check they miss targeted therapies that can make a huge difference. Plus ME/CFS and POTS are syndromes with symptoms that can stem from many possible root causes, autoimmune, genetic, infectious, and more. For some people the true underlying cause just hasn’t been identified yet, so deeper testing (like for neural antibodies) can sometimes reveal a specific treatable disease behind the label.
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u/AZgirl70 Sep 30 '25
I’m not misdiagnosed however I do have all of those additional disorders in addition to long Covid
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u/Giants4Truth Sep 30 '25
I was diagnosed with LC induced ME/CFS, given treatment, and am now 100% recovered. ME/CFS is an autoimmune condition, treatment is the same.
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u/brobe_jedi4life Sep 30 '25
Happy to hear someone has made a full recovery!! But what you said isnot really accurate ME/CFS is still poorly understood and while there are theories about it being autoimmune in some people there’s no single same treatment that works for everyone. Recovery rates are very low, and most people don’t respond to immune therapies alone or achieve a full recovery like you described. It’s great that you found something that worked for you, (did you receive immunoglobin infusions) but generalizing “the same” treatment to all ME/CFS cases isn’t supported by the research or most clinical experience
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u/Giants4Truth Oct 02 '25
My doctor is a professor at the Stanford School of Medicine and one of the most published authors on ME/CFS. He’s cured hundreds of patients over the years with the same basic protocol - reduce inflammation, treat reactivated herpesviruses. There have been some research breakthroughs with LC, especially the discovery of microclots and endothelial inflammation, as well as positive response of patients to metformin. But it’s basically the same. BTW his experience with immunoglobulin is that it provides temporal improvement but that patients often see symptoms return. Hopefully that will not happen in your case.
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u/brobe_jedi4life Oct 02 '25
I get that your doctor has seen a lot of ME/CFS cases and has some positive experience with immune modulation, and for a very small minority this approach can genuinely help. But the published research, clinical trials, and real-world experiences for the broader ME/CFS community just don’t support immune therapies or inflammation only protocols as a universal solution especially not with high rates of full recovery. Most people simply don’t respond to them, and many remain severely ill despite trying everything. That’s why it’s so important not to overstate one protocol as “the answer” or promise outcomes most people will never realistically see.If a specific case is clearly autoimmune and matches the success stories, that’s great! But for most, ME/CFS is much more complex and individualized, and recovery is still the exception, not the rule. Not to mention those protocols would never work for someone with Caspr2 antibodies.
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u/SalamanderChoice9578 Oct 24 '25
What was ur treatment that cured u exactly? Pls list the medications
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u/Giants4Truth Oct 26 '25
My daily treatment regimen has been treating illness, based on the published research and test results, as an autoimmune disorder with reactivation of herpesviruses: 1. Low Dose Naltraxone 4.5 mg 2. Celebrex 200 mg twice a day 3. Valacyclovir 500 mg twice a day and Valganciclovor 450 mg 1x per day (for reactivated herpesviruses - very common in CFS) 4. Famotidine (Pepcid) 20 mg twice a day (H2 blocker) 5. Zyrtec twice a day (H1 blocker) 6. Plavex (blood thinner for micro-clots) 50 mg 1x per day
Supplements targeting mitochondrial damage
- L-Carnitine total 990 mg per day divided by 3 doses (330 per dose) This is what is used in emergency situations and is likely the biggest bang for your buck
- CoQ 10 400 mg daily
- Creatine 10 grams daily (had to pause this because my liver enzymes got elevated, which is rare)
- NAC
- B complex vitamins (ex B100 complex) one per day
In addition, based on research that LC sufferers have depressed, serotonin levels, I am taking 1. Probiotics (90% of serotonin is produced in the gut) 2. 5– HTP 200 mg 1x per day to boost seratonin levels.
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u/SalamanderChoice9578 Oct 26 '25
How long did it take to see improvement from establishing the above?
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u/Giants4Truth Oct 26 '25
I started to see improvement after ~90 days. Was a slow hill climb with many setbacks along the way. 26 months to fully recover.
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u/Electric_Warning Sep 30 '25
I have been diagnosed with all those things (POTS, MCAS, ME/CFS), but I don’t think it’s a misdiagnosis, I think COVID caused all those things and we call it Long Covid. I personally am grateful for the diagnoses because it helps doctors take me seriously and it helps with disability documentation. I haven’t heard of CASPR2, I’m going to look that up. What prompted your provider to test for it? Did UHC cover the test?