Living with LPSVS (long post-COVID vaccination syndrome)

I am 5 weeks out long covid. I tested positive march of 2021. 5 year's of complete disabilities interspersed with Short periods of total charity. I would go from not being able to write my name or my social security number to being able to function normally. My wife and my family do not accept that it's long covid and are ready to have me institutionalized. When I try to explain my behavior their attention span goes to zero. It's already cost me my marriage and support from my family. Is there some agency that is established to help explain in laymen's language whats happening?

@mishabear2025 In laymen's languages, NIH (National Health Institute) does work on finding solutions for Long Covid sufferers and these scientists know LC is "real". It's estimated that a minimum of LC sufferers is around 3 Million (and that is just from reports on people who are seeing doctors for solutions). I'm sorry you experienced that 'zero span' support from family. I would offer a suggestion: Have your NP or GP run T-Cell labs on your blood. This will reveal the state of your immune system. It was this test after nearly 3 years of suffering that lead to a path to potential 'solutions'; beginning with symptom relief. Then, if your T-Cell are 'in trouble' ask for a doctor referral to a Infectious Disease Specialist in your area as this group around the US is doing work on Long Covid solutions.

On the 5th anniversary of the largest most damaging regret of my life. Here is my story. In 2021 I was 41, healthy, active, happy, horny, no history of headaches ( genuinely to the point where I had great sympathy for anyone who got headaches for the few I had prior.) 5 years ago today I got my first Pfizer shot, I had to go to 4 different pharmacies to get this and was crying because I wanted nothing to do with it. I had referred to it as the cancer shot. Never had a flu shot. Refused to ever see any type of PCP, my opinion of the industry less mechanical repairs was low at best. I got that poison shot into me, labored that day, sweat so much there was no dry item of clothing on me. Next day I was out getting my weekly burger with a friend and thought i was going to drop dead right there at the bar - burger only i don't drink. I was able to get my wits about me, took a walk with a friend to ensure i could drive home safely. Then the headache came... Then the fatigue... Then the fog... Then the sensation of being high, but in bad way from wake until "sleep" if you want to call it that. I read all 19 pages of this, and only a couple people mentioned the headache. Anyway as to not write an entire novel. 1 year after I got those 2 pfizer shots I was on vacation for concerts and I caught a cold. I've never been tested for covid because after that first shot I realized the covid tests could well have been dosage of something also. Beyond that they were never accurate as far as I could tell. None the less, i was sick, proper sick, in bed for 2 days sick. Yet on day 2 i woke up and the headache was gone, the fatigue was gone, for all intent and purpose I was myself again, although incredibly paranoid that it was going to return. That was the longest remission I've ever had. It lasted from August to January. I got sick again after Christmas, and day 2 I woke up with my partner the headache. That was January 2022. Since then I've had 3 brief pauses only for about 2 weeks until it started creeping back to crippling levels. My life became a constant struggle to make it to the end of the day. The 3 pauses were post ski trip, post chiropractor ( but only that one time), and getting sick. The subtle difference in the headaches was prior to the first and longest relief it was a headache at my temples. At some point it evolved into pain that feels somewhat external in front of my ears. My head is in a vice, all day every day. My vision keeps getting worse in that I go blurry regardless of what I do. I've been to countless Dr's I have an appointment with oncology tomorrow. Some of my blood work is out of range, no one has made any connections. My PCP is less than stellar, and certainly not at all interested in my well being. I will say reading all these responses is heart breaking, both for myself and all of you suffering. Seems there is no hope, and genuinely no concern. Humanity will continue, the culling was ultimately voluntary even at cost. Every day I regret this, and every day I get a little bit worse. Here is everything that has not made any difference, noting some of these were for other issues which i'll try to note. 1. nsaids - won't touch it 2. doxycycline 2 weeks ( for an eye infection, no expectation, no change ) 3. 12 day taper of prednisone ( pinched nerve, didn't feel anything at all, this one i had some hope for, but nothing ) 4. Vax detox from wellness clinic ( expensive snake oil, nothing at all ) 5. seaweed detox ( more snake oil, nothing ) 6. arthritis drugs from the neuro surgeon ( one of these did help for 20 minutes, then never again, and also gave me heart palpitations ) Not to be negative, but this is not a pretty picture. I'm running out of money to burn on the medical system. Fantasizing about being on my death bed knowing the pain in my head won't follow me is not a great place to be at 47. This has brought me back to Jesus, which is the most important thing that could happen. I was only just starting to live... 2019 was glorious. I threw it all away in 2021 5 years ago today. No support group. Just suffering, shame, pain, and regret...

On the 5th anniversary of the largest most damaging regret of my life. Here is my story. In 2021 I was 41, healthy, active, happy, horny, no history of headaches ( genuinely to the point where I had great sympathy for anyone who got headaches for the few I had prior.) 5 years ago today I got my first Pfizer shot, I had to go to 4 different pharmacies to get this and was crying because I wanted nothing to do with it. I had referred to it as the cancer shot. Never had a flu shot. Refused to ever see any type of PCP, my opinion of the industry less mechanical repairs was low at best. I got that poison shot into me, labored that day, sweat so much there was no dry item of clothing on me. Next day I was out getting my weekly burger with a friend and thought i was going to drop dead right there at the bar - burger only i don't drink. I was able to get my wits about me, took a walk with a friend to ensure i could drive home safely. Then the headache came... Then the fatigue... Then the fog... Then the sensation of being high, but in bad way from wake until "sleep" if you want to call it that. I read all 19 pages of this, and only a couple people mentioned the headache. Anyway as to not write an entire novel. 1 year after I got those 2 pfizer shots I was on vacation for concerts and I caught a cold. I've never been tested for covid because after that first shot I realized the covid tests could well have been dosage of something also. Beyond that they were never accurate as far as I could tell. None the less, i was sick, proper sick, in bed for 2 days sick. Yet on day 2 i woke up and the headache was gone, the fatigue was gone, for all intent and purpose I was myself again, although incredibly paranoid that it was going to return. That was the longest remission I've ever had. It lasted from August to January. I got sick again after Christmas, and day 2 I woke up with my partner the headache. That was January 2022. Since then I've had 3 brief pauses only for about 2 weeks until it started creeping back to crippling levels. My life became a constant struggle to make it to the end of the day. The 3 pauses were post ski trip, post chiropractor ( but only that one time), and getting sick. The subtle difference in the headaches was prior to the first and longest relief it was a headache at my temples. At some point it evolved into pain that feels somewhat external in front of my ears. My head is in a vice, all day every day. My vision keeps getting worse in that I go blurry regardless of what I do. I've been to countless Dr's I have an appointment with oncology tomorrow. Some of my blood work is out of range, no one has made any connections. My PCP is less than stellar, and certainly not at all interested in my well being. I will say reading all these responses is heart breaking, both for myself and all of you suffering. Seems there is no hope, and genuinely no concern. Humanity will continue, the culling was ultimately voluntary even at cost. Every day I regret this, and every day I get a little bit worse. Here is everything that has not made any difference, noting some of these were for other issues which i'll try to note. 1. nsaids - won't touch it 2. doxycycline 2 weeks ( for an eye infection, no expectation, no change ) 3. 12 day taper of prednisone ( pinched nerve, didn't feel anything at all, this one i had some hope for, but nothing ) 4. Vax detox from wellness clinic ( expensive snake oil, nothing at all ) 5. seaweed detox ( more snake oil, nothing ) 6. arthritis drugs from the neuro surgeon ( one of these did help for 20 minutes, then never again, and also gave me heart palpitations ) Not to be negative, but this is not a pretty picture. I'm running out of money to burn on the medical system. Fantasizing about being on my death bed knowing the pain in my head won't follow me is not a great place to be at 47. This has brought me back to Jesus, which is the most important thing that could happen. I was only just starting to live... 2019 was glorious. I threw it all away in 2021 5 years ago today. No support group. Just suffering, shame, pain, and regret...

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.