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.

I have the same condition: Post-Covid Vaccination Syndrome. I have never had Covid. I was injured by the vaccination and the booster. Overwhelming, debilitating fatigue is my primary symptom. I have spent two years losing muscle mass as I lie about all day, unable to do almost anything. Go to YouTube and check out the work of Dr. Jordan Vaughn, in Birmingham. It’s known as Triple Therapy, and involves the use of blood thinners. The theory is that we are suffering from endotheliitis, an inflammation of the interior of our capillaries that prevents oxygen from being absorbed by our tissues. I am currently on Triple Therapy, and I am seeing improvement.

@rsteven I am a member of the same club since November '21 my first and last booster. PEM, Exercise Intolerance, a strange sensation in my head that is very bothersome, recking sensation, etc. I wear an Apple Watch, thus am very tuned into my blood oxygen %. I would think with Dr. Vaughn's point of view those with endotheliitis would measure low blood oxygen levels. Is that the case? Thanks in advance.

I read your story and yours is a lot like mine. I’m still playing the testing game but we all know I have an immune disorder but not sure which one. Sjogren's lung (pulmonary) disease would be one I would look into. The symptoms I have match the Sjogren's but I also have issues breathing still after three plus years. I will request a Rheumatologist referral. They ruled that out but I think that was still suggested to go see. I too have intense Disabilitating muscle and joint pain. Brain fog, and nerve pain all over. Getting treated for Fibromyalgia. Though there is more to it. My Dr is just treating symptoms. More tests being done. They have mentioned Cushings as well. Going to a Medical School Hospital and seeing the head Endocrinologist referred by my Cardiologist. I can barely walk now. Limited.

Hi there… I don’t think the problem is low blood oxygen in the blood. Dr. Vaughn has never suggested this. Whenever an oxygen sensor is placed on my finger, my blood oxygen is normal. The problem, as I understand it, is that the endothelium that lines the capillaries are clogged with microclots, preventing oxygen from being absorbed by the tissues they are meant to feed. Thus, chronic fatigue and a host of other problems. BTW, search for Dr. Jordan Vaughn on YouTube and you’ll find many interviews with him that go into detail describing his work and the “Triple Therapy” he uses to break up microclots.

I have the same condition: Post-Covid Vaccination Syndrome. I have never had Covid. I was injured by the vaccination and the booster. Overwhelming, debilitating fatigue is my primary symptom. I have spent two years losing muscle mass as I lie about all day, unable to do almost anything. Go to YouTube and check out the work of Dr. Jordan Vaughn, in Birmingham. It’s known as Triple Therapy, and involves the use of blood thinners. The theory is that we are suffering from endotheliitis, an inflammation of the interior of our capillaries that prevents oxygen from being absorbed by our tissues. I am currently on Triple Therapy, and I am seeing improvement.

Dr. Vaughn has the correct focus in realizing that the problem is oxygen is being prevented from absorbing in our tissues. That has been my focus since I read about the Italian study on arginine and vitamin C improving long covid symptoms. Could you give a link to Dr. Vaughn's site? Thank you.