Living with LPSVS (long post-COVID vaccination syndrome)

My LC was caused by my first and last booster November 2021.

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.

I am not an anti-vaxer either but am sure my problems, starting in April, 2023 are from the vaccine. Vertigo, chronic fatigue, heart palpitations, high blood pressure, brain fog, exercise intolerance (I was a very active, exercising person), heat intolerance are all symptoms that are chronic or flare up at times. I have been to an hematologist, heart specialist, pulmonologist, allergy specialist, endocrinologist, and had every blood test and scan know to man, all finding nothing significant. The best practice I have learned I learned here from other suffering folks. Pacing. I have finally achieved a level of activity where I can do some basic house chores, some shopping and a bit of exercise. Not always on the same day. I have pushed to exercise and I'm able to do about 20 minutes most days. Pushing myself past where I reach tired (sometimes just cutting up veggies) results in a day or two set back. The key is immediately stopping activity when the fatigue kicks in. The first year, not one doc would talk about the possibility this was caused by vaccines. I was told I needed anti-depressants, or probably just getting old. I even had one doc excuse himself from the room saying he would be right back and then, he never came back. (no longer my primary!!!) I have given up on doctors. They wear blinders and do not look at the whole person in front of them. I hope you find some relief. Pace yourself and take care.

Hello! I am writing this question because i have time.
Disclaimer: To anyone thinking im anti-vaxxer, no im not. I support vaccine and i am a medical professional. Im vaccinated with every vaccine possible (because of work) and i believe vaccine works. I cant really give exact timeline because its been years but ill try to remember ever detail.

However, i wanna start when i got my vaccine on 2021. My first dose was moderna and 4 mos after that i got pfizer. In 2022, i got my third dose still with pfizer. Almost a year later after i got my initial dose, i suddenly felt dizzy. It felt like i was floating and it felt like im gonna faint (but never did). I thought that was because of the nicotine from the vape i was using that time. Ff, i developed headache that lasted for months and on december of 2022 i felt like i was so scared about my health that maybe i had a tumor because of headache and dizziness and feeling of faint. Thats when i decided to see a neurologist. He said i was having panic attack and diagnosed me with GAD. He sent me for head CT scan because i was so scared and to prove to me that there was nothing and yes, my scan was negative. January 2023, i had heart palpitations, and chest pain. I went to cardiologist and she said i was fine. She did 2D Echo on my heart and everything was fine. So i went back to my neurologist and gave me anxiety pills. Since that, i was so conviced that i just have anxiety and that it will be better. 2024 i also had a CT scan on my abdomen because im having pain on my left which the doctors didnt know what causes it. The scan was negative. Ff now its 2025, ive heard about LPCVS or Long Post Covid Vaccination Syndrome. Ive heard news online, studies done by researchers, read articles, and found this forum so i think i need to post something like this. I am still currently feeling the symptoms i had since 2022. Dizziness, Fatigue, Muscle Pain, Exercise intolerance, Fear, Anxiety, Bowel inconsistencies. I believe its chronic now and i dont know where to go for this symptoms to be studied or evaluated and or maybe help me lighten up the burden i am feeling right now. Thanks!

I have not had covid as we have taken all precautions, and do to this day, not to catch covid. I do have LC symptoms and my life has changed, I'm hoping not forever. I have been sent to 4 specialists who all find no cause and my doc has said he is "stumped". While two docs have said "Yes, the vaccines could have caused this." ( I am not an anti-vaxer) That's where the conversation ends. No plan, no hope, no ideas from any of them. I'd really like to know if I should continue to get the vaccines. I have constant fatigue, not as bad as it use to be but I now pace my days, constant brain fog, noise sensitivity. I use to be very active and no can only do limited exercise or yard work, house cleaning. I live in Florida where our surgeon general's actions should tell you all you need to know about the attitudes here concerning covid and vaccines. (geez....he's letting measles run wild). If anyone has been told anything about taking future vaccines and LC or PLCVS, I would appreciate hearing about it. May all people on this site find some peace and better health.