Living with LPSVS (long post-COVID vaccination syndrome)

I have never been an anti-vaxxer either, but after the covid vaccines (2) caused my two rare small strokes in 2021 I will never get another vaccine.

I did not get the vaccine. I do not really trust the pharmaceutical industry and it came out so fast. I have never gotten a flu vaccine and I have never had the flu. I know that this virus has caused me to go through a slew of autoimmune disease symptoms: IBS, interstitial cystitis, fatigue, joint pain and so on. When I first saw my doctor in 2022, my ANA titer was postive, Epstein Barr was reactivated and the Rheumatoid arthritis Igg was flagged, so they assumed I had RA. I do not have RA. The RA doctor did further bloodwork. I told her I thought it was Long COVID and she rolled her eyes at me and said I treat RA, not Long COVID. Anyway, to make a long story short, they tested me for Lyme disease, Lupus, Sjogren's, and many others. All negative but my symptoms have been familiar with some of these, fatigue being the common denominator. The symptoms are not as bad as they were 2 years ago, but I still awaken with fatigue, some days are worse than others. I still have brain fog and tinnitus, PEM and other strange things, but I am hoping this is going away. In another thread, I talked about Low Dose Naltrexone. It has helped, along with Vyvanse (taken for ADHD), Gabapentin, Dicoflenac (for that poison feeling from fatigue or pain) a magnesium supplement, Omega 3 fish oil supplement. I also try really hard not to drink anything but water, low salt food and little sugar. I hope we all get through this and they find a way to help. I still have people that do not believe me. That is infuriating, but it seems that it is taken more seriously now.

I have that and had really strange symptoms. I went to all of the "ologists", literally all. I've gone through all the tests that you can imagine, even nerve conduction test where the muscles are zapped with electricity. EVERYTHING came out negative but I still wasn't able to live a normal life. I've had doctors look at me like I was a hypochondriac. Little by little the symptoms went away, I still have a couple of them but I am learning to live with them. To me the worst part is over but I won't be vaccinated for anything in my life. The only symptom that was identified and medication has helped is the mental foginess, lack of concentration and looking for words when talking. A psychiatrist gave me Adderall and it has been great!

Does anyone here suffer from nerve damage from the covid 19 vaccine? I have seen 17 different doctors in different fields. No one seems to be able to know how to treat the neuropathy or the nerve damage the vaccine has caused.

I am so sorry you are battling this. I would try and see if there is a Long Covid Clinic in your area and call to see if they treat this, Our medical field such as your PCP is not equipped to treat anything much dealing with COVID issues. Blessings & Prayers....

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

Did your Primary diagnose this and you can not find a specialist to treat? What is the nature of the nerve damage and have you had tests to determine another cause?

They don't know, sadly. I take Gabapentin which helps with neuropathy. Also it is a mood stabilizer. You might inquire about it but know that it is a medication that you have to ween off of. It isn't like a benzo, but it can't just be stopped or it can cause anxiety and agitation. I do not know what helps with tinnitus. That is also nerve damage that has happened since I started this sh&tty LONG COVID journey two years ago. Hang in there.

I was neurogolically injured by the bivalent Moderna booster in October of 2022. It seems nobody in medicine wants to acknowledge this as a possiblility. I have sensory and motor neuropathy, dizziness and have gone from a high functioning high peforming person do non functional. I've been to the FB groups and React 19. I've tried FLCCC. None of that really has helped. Is there anyone in medicine even trying to do anything about this for anyone? How about you Mayo?

I have another word for long covid and the vaccine, both have ruined my life, what's left of it. I am 79 and been suffering since I got the last vaccine booster in Sept 2021.