Living with LPSVS (long post-COVID vaccination syndrome)

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

Thank you, I have now been to 4 specialists, all who are finding nothing that is the cause of my fatigue with their tests. My Doc says Mayo here in Jacksonville won't see me. I will read up on CSS. So glad you found a way to get help/help yourself. I appreciate your response.

@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.

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'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 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.

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.

Yes it has been reported that the "vaccines" are a "source" of damage to our systems!!!! My mother is one of thousands effected by the vaccines.

"Some viral-vector vaccines were linked to a higher risk of blood clots in the brain, as well as an increased likelihood of Guillain-Barre syndrome, a neurological disorder in which the immune system attacks the nerves."

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.