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Post-Vaccine Paresthesia and EBV – Anyone Else Experiencing This?
Hi everyone, I’m new here and seeking insights on symptoms since my Pfizer vaccine in May 2021 (no COVID infection). Started with mild tingling/numbness in arms and legs, now full-body paresthesia (8.5/10—burning, especially lower legs), severe neck/shoulder headaches, dizziness, leg weakness and extreme fatigue, tinnitus, and odd chest sensations. It’s worsened gradually over time, with periodic intense flare ups.
Tests show EBV reactivation (VCA IgG high 2023, IFN-γ elevated 2024), abnormal cytokines (high RANTES/IL-10, low IL-6/TNF-alpha), and normal MRIs/ANA. EMGs (2024/2025) show mild carpal tunnel and borderline sensory changes, but no clear nerve damage. Rheumatologist suggests fibromyalgia, but I suspect post-vaccine syndrome (PVS) with EBV—Yale paper notes this link. Possible small fiber neuropathy (SFN) awaiting biopsy. No fever, just fatigue and nerve sensations.
Current regimen: valacyclovir (500 mg daily, reduced from 1000 mg due to Herxheimer), PEA (600 mg), nattokinase (100 mg), magnesium (200 mg), garlic (1200 mg), probiotics, sleep gummies (4.5 mg melatonin). Recently started MyoCalm Plus and low dose naltrexone (1 mg). Also doing red light therapy, cryo therapy, compression, stretches, careful diet, low sugar. Awaiting tests (April 3) for EBV, strep antibodies, D-dimer, testosterone, etc.
I do have a good integrative physician who is informed and open to thinking outside of the box, whereas most of conventional medicine is not. PVS is a relatively new diagnosis and there isn't any standard protocol, so it makes things difficult.
Has anyone had post-vaccine paresthesia, EBV reactivation, or possible SFN without clear nerve damage? Tips for managing burning sensations, leg fatigue, or Herxheimer reactions? LDN experiences? Anything that’s helped you? Thanks—this group feels like a lifeline!
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I had a very similar reaction right after my second Pfizer vaccine. I went on steroids which helped but did not completely get rid of the paresthesia. I have not had a lot of luck with doctors figuring it out but I have very recently found a correlation to how drugs are broken down in your liver when you have Gilbert’s Syndrome (which I have). By any chance, do you have Gilbert’s as well? I have had several odd drug responses and I’m wondering if it has to do with my liver and Gilbert’s.
That's interesting, but I don't have Gilbert's Syndrome as far as I know, I had to look that up. My hepatic panels have always come back normal.
I had the two dose Pfizer covid vaccine and also one booster. I did notice that immediately after getting the very first shot I had an odd tingling sensation in my fingertips. That has never gone away, just eventually spread to the arms and legs, and sometimes I can feel it everywhere. It's like a combination tingling/burning/numbness, very odd, but uncomfortable and unsettling.
Yes my tingling has not gone away completely either. Gilbert’s is typically a benign condition but I’m learning that people can have adverse drug reactions if you have it. It is also one of those conditions that goes undetected unless specifically looked for or randomly found.
Good to know, I'll ask my doctor about that.