Living with LPSVS (long post-COVID vaccination syndrome)

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 had the 4 Pfizer shots with the same symptoms after each: strong fatigue, muscle aches, breathing difficulties and brain fog. They would last for 3-4 days and I would get better. About a week after the 4th shot, I went on a nature hike with my granddaughter and the next day all the symptoms returned. That was my first PEM and they continued for 1.5 years in a “roller coaster” fashion and I could not plan on doing any family events because I was afraid of “taking a dive” at any time. I never tested positive for Covid and all my annual “wellness” blood tests came out normal, as in pre-pandemic.
Early this year, I saw a study that was done in Italy on using L-Arginine and vitamin C that reduced the Long Covid symptoms. L-Arginine creates nitric oxide that we need to convey oxygen to our tissues. I started taking a low dose and found that the PEM was gone. That encouraged me.
I added L-Citrulline that turns into L-Arginine. I limited the vitamin C to 500mg per day to avoid stomach discomfort that I experienced at 1000 mg per day. My symptoms have drastically reduced. I have added L-Carnitine and Creatine.
Nitric oxide is needed for circulating oxygen to our tissues. It relaxes the blood vessels that allows for better flow of the blood to carry the oxygen. It lowers blood pressure.
However, the production of nitric oxide in our bodies can be reduced by a diet in high salt, high fat or high sugar. It can even be lowered with using a mouth wash that destroys the good bacteria in our mouth. The production system for nitric oxide is very sensitive to what else enters our body.
My theory is that the Covid vaccines impacted our ability to produce nitric oxide which is causing our symptoms. Low oxygen levels in our tissue can cause fatigue, muscle aches, breathing problems and brain fog. I believe that my “roller coaster” symptoms were dependent on the level of nitric oxide producing foods that I consumed, such as beets, celery, cocoa and citrus (vitamin C) that improved my symptoms. They are now my dietary focus. But when I did not have them in sufficient quantity, I “took a dive”.

Below is an excerpt from an article on the study in Italy that showed “chronic fatigue of the post-Covid syndrome is precisely associated with an alteration in the metabolism of arginine” and that “in patients with long Covid there is an alteration of the metabolism of arginine, which stimulates nitric oxide, a key enzyme for proper immune and vascular function.”
The mechanism that leads to chronic fatigue in Long Covid patients has been discovered, according to new Italian research.
“The mechanism of action that leads to the state of fatigue, or disabling exhaustion, linked to Long Covid which affects 1 in 3 people who are victims of the Sars-CoV-2 infection has been discovered: it is triggered by a deficit of arginine, an amino acid naturally produced by the body.
This is demonstrated by a study on long Covid conducted by the Agostino Gemelli IRCCS University Polyclinic Foundation – Catholic University Campus of Rome, according to which the chronic fatigue of the post-Covid syndrome is precisely associated with an alteration in the metabolism of arginine.
The new study highlighted that in patients with long Covid there is an alteration of the metabolism of arginine, which stimulates nitric oxide, a key enzyme for proper immune and vascular function.
The researchers also demonstrated that the administration of 1.6 grams of arginine and 500 mg of liposomal vitamin C for 28 days restores the metabolism of arginine to a normal level and effectively counteracts fatigue.”
https://www.coronaheadsup.com/health/long-covid/long-covid-fatigue-caused-by-an-arginine-deficiency/
If you are on any meds, review them for interactions with L-Arginine supplements, or talk to your doctor.

I have had problems since my Covid vaccine , 3 years of being “sick” but no diagnosis. I am a very active person and hard worker at my career until after those shots.
It does go into remission and I think I am cured or it’s over and then it blind sides me out of nowhere and I face weeks of being in bed and other issues and I just have to wait for it to pass. Frankly I am pissed

I have had problems since my Covid vaccine , 3 years of being “sick” but no diagnosis. I am a very active person and hard worker at my career until after those shots.
It does go into remission and I think I am cured or it’s over and then it blind sides me out of nowhere and I face weeks of being in bed and other issues and I just have to wait for it to pass. Frankly I am pissed

They wont see me at mayo what was their plan?

so very sorry to hear of your suffering. thank you for your service. my doctor recommended I *not* get next booster. have had long covid since March of '20, followed by boosters that were supposed to make me feel better, but did the opposite.

I hear you!! I have had the same symptoms you have for the past four years. I also had vaccines but they were moderna, however I'm not sure if I got long term covid from the vaccines or from my initial bout of the Delta Covid virus. I got Covid before the vaccines were even available to the public. I can identify with your symptoms especially the dizziness and losing vision focus.
I have been reluctant to travel as well because of this. My symptoms like yours come and go, sometimes I can have a week or two before they come back and during these periods I try to take advantage of this time to get things done. I have had the same kind of experiences with doctors but fortunately found a PC that at least listens although there is little he can do to treat the symptoms. When I am having symptoms the only thing that brings me some relief is Tylenol. I have learned to pace myself as far as physical exertion is concerned becaues it tends to bring on the symptoms sooner. My life has changed because I was a very active person and enjoyed sports like tennis and hiking, I can no longer play tennis and my walks are relatively short one. I have had numerous test to try and identify what is going on but all come back normal. All of this has been very frustrating and somtimes depressing. All I can say is " hang in there". I am hopeful that research with find some kind of treatment in the future. Good luck to you, thank you for your service, from anothe veteran.