Living with LPSVS (long post-COVID vaccination syndrome)

I developed several autoimmune conditions from Covid/vaccine. It started with antiphospholipid syndrome (clotting disorder). I developed the lupus anticoagulant antibody and had an event in October 2021 (acute DVT in right thigh and saddlebag PE). I had Covid in Jan 2021 and then was vaccinated April/May 2021 with Moderna. Extensive bloodwork and genetic testing found that my APS developed due to either Covid or the vaccine, they can't single out which, but derived from infection and not genetics. I am still on blood thinners due to the APS. In late 2022 I started experiencing intense/debilitating muscle/joint pain, brain fog, tingling sensations, etc. and was diagnosed in May 2023 with Sjogren's syndrome. Again, linked back to Covid/vaccine. I am now on a prescriptions that have immensely helped give me a sense of normalcy, but I went from great health to a complete shift in 2021.
All this to say that it may be worth exploring autoimmune conditions (antibody tests) through a rheumatologist to make sure your long Covid symptoms aren't something more. I had to advocate for myself in getting a Sjogren's diagnosis because none of my doctors were connecting the dots, but I knew my pain was extreme and spoke to something more going on. I pushed for blood tests and found a rheumatologist through recommendation from my hematologist. I never tested positive for ANA, but my inflammation tests were off the charts before I saw my rheumatologist and got a diagnosis.
I have not gotten any Covid vaccines/boosters since because I know my body is susceptible to creating antibodies that later turn, and frankly I am still unraveling new diagnoses since and wouldn't like to take any chances with developing more.

Thank you so much for taking the time to share this. I'm sorry to hear how this has effected your life. I will explore the autoimmune aspect as I have had Menieres for decades. I have never had Covid.

Yes, my Long COVID began shortly after my first Moderna booster in November '21. A much longer story, but the short version is that I worked my way through every local Specialist and all the tests they could throw at me, finally going to Mayo Rochester LC program in August '23. When I asked several Mayo medical professionals if was wrong attributing LC to the booster, their response was consistently "we have heard that from many others". My only positive test for COVID was July '23 and it was a mild 'head cold' like case.

On several Doctor's advice I will not take the vaccine again. The Mayo program is very good and with nearly 5 months of executing their plan I feel better, not 100%, but at least better.

Thank you for this post. Mayo has not accepted me as a patient as I don't have a doctor offering a diagnosis. My doc sent me a message today saying he will forward all my tests to Mayo so maybe, maybe, I will be able to be seen by someone who works with LC or PLCVS. I appreciate the hopefulness in your post.

I'm being tested for a variety of autoimmune diseases and nothing has turned up so far.I did a timeline of my symptoms along with the times I had covid vaccinations and was floored that it seems really apparent that the vaccine triggered my symptoms (afib, intense fatigue, pain, brain fog, ...).My question is how do I find a doctor who will treat lpcvs? I am in the Cleveland area and no one wants to talk about it. I get the sense that anything that smacks of being antivaccine is verboten. I'm not anti vax but I do feel that my illness is related to the covid vaccine.

I would personally look for an Integrative Medicine doctor that treats Long Covid. They are out there and they know their stuff. Praying for you and I wish you the best. I care.

That's a new classification for LC that I haver not heard before. I began experiencing LC symptoms in November '21 after my first (and last) Moderna booster. I have been to Mayo and followed their program. When I posed the "am I crazy to think that my LC was caused by the booster" question, medical professionals at Mayo all responded "we have heard that before". So while there is no proved cause and effect, we are not alone. I feel better, not 100%, but better. You are not crazy and not alone. I have only tested positive twice for COVID, both cases being 'bad cold like' and both at least 6 months after my booster. My symptoms were PEM, Exercise Intolerance, Brain Fog, and a head sensation kind of like dizzy and light headed (but at no time have I fallen or really felt like I was going to fall).

What type of advice did they give you? I have been struggling since my Covid shot in Oct. I have been advised not to receive another Covid vaccine

Would you mind sharing what their plan is? I would love to feel better!
thanks

@abbydoo I have also been advised to not get boosted again. My plan is to have Paxlovid available should I have a bad case of COVID. My journey started locally and on of my Doctors called it "the journey of what its not", with every test in the book thrown at me. Timeline for all that was January '22 to August '23. In August I went to Mayo Rochester, spending 3 days there. Lots of testing and medical professional interactions. Back at home I had several virtual coaching sessions pulling together my personal plan and then across 3 months virtual follow ups with Nurses and PT. Short story my plan included prescriptions, supplements, exercise, meditation, the causes and counter measures for Exercise Intolerance and Post Exertion Malaise and understanding CSS (Central Sensitization Syndrome) which is how LC affects the body. Everything is directed at curing CSS. My 3 months ended in December, but I still stay in touch with Mayo medical professionals as needed.