Living with LPSVS (long post-COVID vaccination syndrome)

Yes. I've had Covid twice, LC all along. Various vaccines and boosters boosted LC symptom,. Dramatically, at least until I stopped having them.

Ironically Covid itself was mild. Mar 2020 first case.
Substantially better now, but not 100%

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).

Oh good lord! I’m so sorry you’re suffering so. You mentioned you’re seeing an Endocrinologist, please have them test your Thyroid levels. You could either have hypothyroidism or hyperthyroidism or Hashimoto’s. I have hypothyroidism with Hashimoto’s (autoimmune) disease and am being treated with Synthroid. I had brain fog and began gaining weight rapidly. It could make a big difference in your body if you have either of these and are not being treated. Good luck!

Hey I have a lot of the same going on as you, for the last 4 years have you found any relief?? And if so what are you doing?? Thanks hope all is well

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.

@rsteven Apologies if you already answered my question somewhere in this thread. Reads like you are being treated? How does one get started with an evaluation by Dr Jordan Vaughn?

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.

@cally0082 candidly I can't point to any one thing that I've done and I wish that I could. Every test under the sun locally and then at Mayo Rochester (where I set a personal record for numbers and types of blood tests) and the only finding of all types of tests was from 2 tilt table tests where there was "some indication of dysautonomia". My first tilt table was at home (some indication), second at Mayo (no indication). Mayo's test was negative and Doctors there saw the difference as healing. I've followed Mayo's program of prescriptions, supplements, moderation. Throw in time (it's been 3 years for me) where the body should be working to heal itself and it's impossible to tell. I've even done acupuncture, cranial sacral, and 4 X 4 breathing mediation. I would guess it's just managing my symptoms and knowing what not to do with the biggest thing being not overdoing things. Thus my view of "better not 100%". I certainly wish that medical science would have an ah hah moment and point to something.