Living with LPSVS (long post-COVID vaccination syndrome)

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.

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’ve got the arginine and we’ll see how it goes !!!

The dosage of arginine / L-Citrulline that is needed appears to relate to the activity / exertion level. I started with 1 gram, worked up to 8.25 grams and when I felt okay, I cut it back to 3 grams. I was feeling fine at the 3 gram level.
Now that spring is here and I am back to landscaping / maintaining my large yard, I get tired out after a couple days of exertion. So now I am going back to 8.25 grams. That dosage level does help to offset the exertion. (A rainy day could help too. 🙂 )
So you have to "experiment" what dosage works for you at your current exertion level. Hope it helps. Remember to add at least a small amount of vitamin C, around 100mg.

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'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.

The dosage of arginine / L-Citrulline that is needed appears to relate to the activity / exertion level. I started with 1 gram, worked up to 8.25 grams and when I felt okay, I cut it back to 3 grams. I was feeling fine at the 3 gram level.
Now that spring is here and I am back to landscaping / maintaining my large yard, I get tired out after a couple days of exertion. So now I am going back to 8.25 grams. That dosage level does help to offset the exertion. (A rainy day could help too. 🙂 )
So you have to "experiment" what dosage works for you at your current exertion level. Hope it helps. Remember to add at least a small amount of vitamin C, around 100mg.

So far so good. Been taking 1000mg for 2 weeks with improved symptoms. No symptoms really.

So glad it is helping. I have been able to do more activities this past week than I did in the past year. I am thankful for the Italian study.