Long time lurker, probably over 20 years, first time posting. I hesitated to write this since it'll probably get a less than popular reception and I apologize for the long post. I also hoped to post at the beginning of the conversation, but here it is. Since I have a little experience in this topic I thought I would share. I was also enrolled in the LISTEN study through Yale that this research is based on, though i didn't supply any samples and wasn't a direct participant other than providing information.
In December of 2021 I received my 3rd moderna vaccine and what happened after that was something I would have never believed if it didn't happen to me, so i fully understand those that don't/can't believe this is a real thing.
The day after the booster I started to experience an elevated HR and a tightness in my back which I chalked up to a normal reaction, but after 4 days of this I decided I could "workout" any lingering effects and proceeded to go for an easy ride on my bike trainer. After 30 mins or so I stopped took a shower and sat on the couch. Looking at my Garmin watch my HR was sitting between 110 and 130 an hour later and I was feeling awful. Afraid I was having a heart attack I had my wife drive me to the ER and was immediately brought into a room with suspected afib. My HR would swing from 110 to 150 with even the slightest movement. I passed the tests I was given to rule out a heart attack, negative for covid, and was given intravenous ativan as this was a suspected anxiety attack. Other than making me drowsy this didn't touch the HR issues and I was sent on my way to see my PCP the following week. Lots of tests, no solutions and things went from bad to worse
I'm fit and in shape, lift weights, bike, play sports, never a serious health issue in my 45+ years on this earth but over the next few months went from 180lbs to 150lbs, i could barely walk around the block after completing an untra endurance event just 3 months earlier, had horrible insomnia, unable to fall asleep or stay asleep and would experience hypnic jerks when I could often the entire night for close to two years, like 2-3 days a week jerk awake ALL NIGHT just before falling asleep and then crash hard for a night then rinse repeat. This is a hell you wouldn't wish on your worst enemy. I developed POTS, tachycardia, reduced vision in my right eye, neuropathy, blood pooling, high blood pressure, tinnitus, mood issues, horrible brain fog which was more like dementia than just groggy, palpitations. There was more, but this is probably enough to get the idea.
Local doctors were pretty much clueless as to what to do and what tests to provide. I did have an in-person zoom call with everyone's favorite researcher Dr Bruce Patterson (if you know you know), but his methods offered little help and I'll leave it at that. I did get a battery of tests from him that showed irregular Cytokine numbers. Other researchers offered tests like a TAT (thrombin antithrombin) to look for irregular clotting since normal tests such as a d-dimer weren't showing much. My TAT was literally off quest diagnostics chart, which I'm told isn't so great. Mt Sinai was doing research into this for long covid aswell as PVS and confirmed the presence of irregular fibrinogen clotting. Dr David Putrino headed that research if there's interest in that.
Yada yada long story short I fought this novel illness for 3 years before it finally resolved for the most part. I'm not 100%, but i would say I'm 99%. A few things linger, but i live normal again. The worst thing post recovery has been recurring shingles when i overdue it physically or get stressed.
I'm not posting this to change anyone's mind, but rather to give a first hand account of what happens in one of these PVS situations. Essentially the vaccine game me an extreme case of long covid, so anyone with any experience themselves or an acquaintance that's exactly what the PVS is like. If anyone has any questions or concerns I can try and answer what I can. I won't go into anymore details and waste time if not. If this isn't welcome, believe me, I get it. The only thing worse than the hell this put me through physically is the publics reaction and even worse friends and family. Getting a novel illness, a novel illness that's politically uncomfortable and nobody understands medically is an interesting experience.
I'll also add I'm in no way antivax. I understand the misinformation that comes from both sides of the argument aswell. I think for pretty much everyone they seem to work as advertised, but I'm not qualified to offer any more than an opinion in that regard. I did get 3 moderna after all, but for me they did not. AMA.