Covid 19 Post Vaccination Syndrome

Hi @gpd1101. Your friend is very lucky to have you! They sound very energetic and if I may share my providers informed advice of slow and steady knowing set backs are expected. Also keeping an eye on things causing/increasing inflammation. Not to be discouraging as it takes time to maneuver and heal while dealing with other factors known and not known🙃 The biggest and hardest thing is not allowing to feel any increased pain or fatigue etc while slowly building muscle and stamina that allows growing healing improvements. Hopefully they have healthcare system that can provide covid trained physical therapist to further assist getting your walking together again! Quickest healing journey🌈

The posts about EBV and autoimmune disease may be helpful. The other post: Questions about Dr. Bruce Patterson. The EBV post began with a finding about people who have in the past (1960s, 70s) mononucleosis and ties to Lupus and what happened when the spike protein entered the body (either with an infection or after a vaccine) causing Guillame Barre or EBV to restart in the body. The other post: Dr. Patterson has a program to treat long haulers that appears to be getting results. There are 62 pages of other posts that have presented data that might be helpful so search: Post-COVID Recovery & COVID-19 Support Group

@law59 sorry your friend is going through this. I am 56 and also have this issue. Started to develop this in 2022, I have developed fluctuations in pain, ataxia and mobility. For me, rest up days before an outing. I try to gently stretch in bed bed before getting up, and anywhere before bed. The faster you learn to stop doing chores and such BEFORE you start tiring in the most important. Also, look into a rolator. They have a seat so you can sit when needed. They are not all the same, I suggest you rent one for a few days and take it shoping. You will lwarn alot. I was surprised when I rented one how inexpensive it is, and how simple things can inhibit independence. Examples, does it adjust enough to fit your proportions, is it to heavy or large, will the wheels work for the areas outdoors you want to go, do the cables catch on items when shopping, location of a basket, cane holder, backrest......
Ps, I was very active outside, city explorer, and love the arts. I am 5'9 120-125lbs and 56. Started having worsening issues shortly afterwards also. Read about pacing !

Hi @1ladybird. Thank you so much for the encouraging words! I am actually the one on year 4 of this and so appreciate your better wording of pacing etc which I swear by as I too was very active and lived outdoors. The rolator for me was truly gift in the beginning yet it could create crashes just strength pushing it and I still now take it outside w brake on to assure steady to pull myself up or unexpectedly cant walk back can at least sit a while until able to move!🙃. My trauma provider shared simple things to do like just take picture of flower at doorway on hard day or plant a six pack in pot on good day🙂 Hope you are getting your outdoor enjoyment and quickest healing to you🌈

@gpd1101
Last 5 years 24x7 headaches/ migraine (with auras) my "new normal". If I try to read or work on computer for more than 30 - 45minutes, strong burning sensation top front of brain, CFS – chronic fatigue syndrome, dizzy. Been working with Neurologist (CT Scan and blood work) - learned taking Tylenol to long causes rebound headaches.
Neurologist refer me to Immunologist (Allergy/Immunology). I had a very productive 1st appointment. I keep notes on Symptoms, Current and Previous medications, previous health issues - no sleep history from smart watch, Family history, etc. She requested Lab work (Blood test) for some new things I had not heard before (I can't remember what they were right now). She mentioned that she would need to refer me to another Immunologist for deeper insight.

It has helped me to bring research papers like the following, to get the point across I'm serious.

Persistence of spike protein at the skull-meninges-brain axis may contribute to the neurological sequelae of COVID-19
https://www.cell.com/cell-host-microbe/fulltext/S1931-3128(24)00438-4
Highlights
SARS-CoV-2 spike protein persists in the skull-meninges-brain axis in COVID-19 patients
Spike protein is sufficient to induce brain pathological and behavioral changes in mice
Spike protein enhances brain vulnerability and exacerbates neurological damage in mice
mRNA vaccines reduce, but do not eliminate, the spike burden

Feb 19, 2025 - A small number of people report chronic symptoms after receiving COVID-19 shots. A new study provides clues for further research.
https://news.yale.edu/2025/02/19/immune-markers-post-vaccination-syndrome-indicate-future-research-directions
COVID-19 vaccines have been instrumental in reducing the impact of the pandemic, preventing severe illness and death, and they appear to protect against long COVID. However, some individuals have reported chronic symptoms that developed soon after receiving a COVID-19 vaccine. This little-understood, persistent condition, referred to as post-vaccination syndrome (PVS), remains unrecognized by medical authorities, and little is known about its biological underpinnings.
(click link to read more)

It’s a journey, Best Wishes for Your Journey!
🍀

continue page 2 of 2
https://news.yale.edu/2025/02/19/immune-markers-post-vaccination-syndrome-indicate-future-research-directions
A small number of people report chronic symptoms after receiving COVID-19 shots. A new study provides clues for further research.
Feb 19, 2025
By
Mallory Locklear

COVID-19 vaccines have been instrumental in reducing the impact of the pandemic, preventing severe illness and death, and they appear to protect against long COVID. However, some individuals have reported chronic symptoms that developed soon after receiving a COVID-19 vaccine. This little-understood, persistent condition, referred to as post-vaccination syndrome (PVS), remains unrecognized by medical authorities, and little is known about its biological underpinnings.

In a new study, Yale researchers have taken initial steps to characterize this condition, uncovering potential immunological patterns that differentiate those with PVS from others. The findings are early and require further confirmation but may eventually guide strategies to help affected individuals.

“This work is still in its early stages, and we need to validate these findings,” said Akiko Iwasaki, Sterling Professor of Immunobiology at Yale School of Medicine (YSM) and co-senior author of the study published Feb. 19 as a preprint on medRxiv. “But this is giving us some hope that there may be something that we can use for diagnosis and treatment of PVS down the road.”

Some of the most common chronic symptoms of PVS include exercise intolerance, excessive fatigue, brain fog, insomnia, and dizziness. They develop shortly after vaccination, within a day or two, can become more severe in the days that follow, and persist over time. More studies are needed to understand the prevalence of PVS.

“It’s clear that some individuals are experiencing significant challenges after vaccination. Our responsibility as scientists and clinicians is to listen to their experiences, rigorously investigate the underlying causes, and seek ways to help,” said Harlan Krumholz, the Harold H. Hines, Jr. Professor of Medicine (Cardiology) at YSM and co-senior author of the study.

Data for the study came from Yale’s Listen to Immune, Symptom, and Treatment Experiences Now (LISTEN) Study, through which researchers aim to better understand long COVID and PVS. For the new study, researchers included data from 42 LISTEN participants who reported symptoms of PVS and 22 individuals who did not report any PVS symptoms after receiving a COVID-19 vaccination.

From participants’ blood samples, the researchers looked for immune features that were different between the two groups. They found several differences in immune cell populations; those with PVS had lower levels of effector CD4+ T cells and higher levels of TNF-alpha+ CD8 T cells — both are types of white blood cells — among other differences.
(click link to read more)

@fourleaf It's taken 2 1/2 yrs, but this summer has been productive in solving my long covid. At this point, blood work appeared to show I've had an allergic reaction to the covid spike protein. My T-cells were the first clues providing answers to what was under attack. I have one final test pending to determine spike protein is seen by my auto-immune system overdrive because it decided it was an invasive 'fungi' . I feel what you reported about spike protein impacts to the brain is another clue for primary doctor to review. Hard to test brain tissue, but T Cell studies is the starting point. Thanks for the details.

Also consider the possibility of mold toxicity, mycotoxins. There is a simple urine test for that. Many of the symptoms overlap with long covid, post covid vaccine disorder, lyme disease, and fibromyalgia.

@mikesixtysix with the caveat that the urine test only measures mycotoxins leaving the body and not the antibodies in your body. Given the variables involved a urine test may not always catch the presence of mycotoxins.

@arichards3 indeed, but its more accurate than a blood test for mycotoxins, as the mycotoxins are in a lower concentration in the blood and can degrade or bind to proteins. the other alternative is tissue sampling, but that's certainly more invasive. the urine test combined with environmental testing which would provide context for the urine test results is a practical way to go. of course, a physician who specializes in mycotoxins is highly desirable, if you can find one and get an appointment.