Living with LPSVS (long post-COVID vaccination syndrome)

Posted by sandtoes @sandtoes, Jan 11 10:17am

Has anyone experienced long-covid symptoms from the vaccines. I have been searching for 10 months now for the cause of my severe fatigue. I have been sent to an ENT, a cardiologist, a hematologist and undergone so many tests/scans. My doc told me a few days ago that he is stumped. No idea. Come back in a month. I pace myself to get through a day. Is this LPCVS? Is there something to do besides pace oneself? Should I ever get another covid vaccine?

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

@kayabbott

I'd be interested in any papers/links on "thousands effected by the vaccines". I believe there are links between diseases/stress and cascading autoimmune and other reactions. I got celiac after contracting H1N1 years ago. Fox news is not science, it only presents and frequently mangles snippets of scientific news and opinions. As an example "Some viral-vector vaccines were linked" is misinformation because it gives no statistics, no facts, and no or weak background. Some of its sources are Fox news snippets. It is like saying there is a link between being human and getting run over by a train. This site has some info on the rare but serious reactions of vaccines: https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-vaccine/art-20484859#:~:text=In%20some%20people%2C%20COVID%2D19,complications%20called%20myocarditis%20and%20pericarditis. Here is a link for reporting adverse vaccine reactions: https://vaers.hhs.gov/

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ty so much for these links, especially the one for vaers.

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@flemingms

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.

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The last booster caused an immediate and strong Long Covid relapse for me. No doubt. The response was strong and 22 hours later. No doubt in my mind anyway.

I got COVID Mar 2020. Did not get terribly sick. Got it a second time (tested positive) June '22.

I was feeling close to 100% prior to the second infection. Long, long COVID ever since. There are no clean takeaway conclusions.

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@spittendrigh

The last booster caused an immediate and strong Long Covid relapse for me. No doubt. The response was strong and 22 hours later. No doubt in my mind anyway.

I got COVID Mar 2020. Did not get terribly sick. Got it a second time (tested positive) June '22.

I was feeling close to 100% prior to the second infection. Long, long COVID ever since. There are no clean takeaway conclusions.

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12 hours later not 22

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@flemingms

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.

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After the second Moderna covid vaccine, my wife got sick with chronic fatigue or long-covid like symptoms. It's been years now and she's still debilitated with intermittent fevers. Can anybody help?

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@pauljay

After the second Moderna covid vaccine, my wife got sick with chronic fatigue or long-covid like symptoms. It's been years now and she's still debilitated with intermittent fevers. Can anybody help?

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@pauljay, I moved your post to this existing discussion to help you connect with other experiencing long-COVID like symptoms after vaccination. Click here:

- Living with LPSVS (long post-covid vaccination syndrome) https://connect.mayoclinic.org/discussion/doctor-to-treat-lpcvs-long-post-covid-vaccination-syndrome/

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@colleenyoung

@pauljay, I moved your post to this existing discussion to help you connect with other experiencing long-COVID like symptoms after vaccination. Click here:

- Living with LPSVS (long post-covid vaccination syndrome) https://connect.mayoclinic.org/discussion/doctor-to-treat-lpcvs-long-post-covid-vaccination-syndrome/

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Thanks, Colleen.

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@sandtoes

I have not had covid as we have taken all precautions, and do to this day, not to catch covid. I do have LC symptoms and my life has changed, I'm hoping not forever. I have been sent to 4 specialists who all find no cause and my doc has said he is "stumped". While two docs have said "Yes, the vaccines could have caused this." ( I am not an anti-vaxer) That's where the conversation ends. No plan, no hope, no ideas from any of them. I'd really like to know if I should continue to get the vaccines. I have constant fatigue, not as bad as it use to be but I now pace my days, constant brain fog, noise sensitivity. I use to be very active and no can only do limited exercise or yard work, house cleaning. I live in Florida where our surgeon general's actions should tell you all you need to know about the attitudes here concerning covid and vaccines. (geez....he's letting measles run wild). If anyone has been told anything about taking future vaccines and LC or PLCVS, I would appreciate hearing about it. May all people on this site find some peace and better health.

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I didn’t get the vaccine but had Covid and now have long Covid. There is a physician in The Villages Fl who treats this. She has been treating over 3,000 patients in the past three years for this and is one of the Dr’s who petitioned for the ban on Covid vaccines in Fla

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@flemingms

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.

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Thank you for the info. I am not an anti-vaxer. I believe in vaccines, just think I had a bad experience with this. Personally, I wouldn't trust a doc who petitions against any vaccine. I do however very much appreciate you taking the time to post this information.

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@pauljay

After the second Moderna covid vaccine, my wife got sick with chronic fatigue or long-covid like symptoms. It's been years now and she's still debilitated with intermittent fevers. Can anybody help?

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I am so sorry your wife is dealing with this. It has been a year since I started experiencing chronic fatigued brain fog. I have been sent to four specialists who all have found nothing major wrong. Then my doc threw up his hands and gave up. I am seeing a new doc this week but expect nothing as no docs will address long covid from a vaccine. What has been helpful is some people on this site have recommended pacing to get through the days. While this is not a cure, it is helping me to cope with the fatigue and get some things done in the day. Pushing myself to build endurance does not work, it sets me back. Keep moving! Keep hoping!

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@flemingms

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.

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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.

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