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Small Fiber Neuropathy and Epstein-Barr Virus

Posted by giulia76 @giulia76, Aug 30, 2022

I was diagnosed with small fiber neuropathy in 2020 through skin biopsy after 8 years of a whirlwind of symptoms. I won’t bore you with that list or the tests I have done to determine, for now unsuccessfully, what is causing my small fiber neuropathy (I will be happy to, if someone wants to compare symptoms and tests performed, although I am well aware, everyone’s experience is different). I had mono when I was 19 and I also have herpes viruses that are active although I haven’t been tested. I am having a hard time getting both my neurologist and my PCP to listen to me and investigate further. Does anyone else have small fiber neuropathy because of mono or other herpes viruses? If so, how did you go about getting diagnosed? I am not saying this is the cause but I would like to determine if it is or if it is not. Thank you.

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sfnmcashatsebv | @sfnmcashatsebv | Aug 4, 2023
In reply to @pacer3702 "The Covid vaccine injuries resemble long Covid in terms of their underlying pathology. I belong to..." + (show)
@pacer3702

The Covid vaccine injuries resemble long Covid in terms of their underlying pathology. I belong to the Neuro V Long-Haulers Facebook group. On that site, a famous Danish physician with expertise with both chronic fatigue syndrome and vaccine injuries recommended a drug for a patient with a history of EBV who was suffering from neurological symptoms after the Covid vaccine. I think the drug was an antiviral against the reactivated EBV due to immune dysfunction caused by the vaccine. Similarly, immune dysfunction has been linked to long Covid, so you could also have reactivated EBV.

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I don't know if i have reactivated ebv or not. result EBV AB VCA IGG 449.0. I have a lot of nerve pain hand so difficult to type and research

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sfnmcashatsebv | @sfnmcashatsebv | Aug 4, 2023
In reply to @sfnmcashatsebv "I don't know if i have reactivated ebv or not. result EBV AB VCA IGG 449.0...." + (show)
@sfnmcashatsebv

I don't know if i have reactivated ebv or not. result EBV AB VCA IGG 449.0. I have a lot of nerve pain hand so difficult to type and research

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I had small fiber neuropathy after covid infection, not after the vaccine. The vaccine gave me anaphylaxis to food, physical weakness

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elena_l | @elenal | May 17 8:17pm

I just got tested for EBV and Lime as I was told by my naturopathic doctor, both can contribute to neuropathy. The Lime test was negative but my EBV AB VCA IGG turned out to be 180! (with 18 being the threshold). I feel this also explains the positive ANA that came up several times in my labs, which the doctors haven't been able to figure out. @sfnmcashatsebv any updates on what you did after you found out the numbers? I'm just starting to research this.

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martame | @martame | May 18 8:06am

I also have herpes virus and idiopathic small fiber neuropathy. I do wonder if there is a connection.have not had the biopsy yet.

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bowersra | @bowersra | May 19 10:17am

Neurologist are a breed of doctor that think that they know everything and will not take time to really find out all our symptoms.
My first one said “ you have neuropathy.. live with it””

My second one did run tests I will give him that. He did lumbar puncture. And skin punch test.
But decided that my neuters from toxin.
But tests didn’t prove it.
But he still said toxins…
Would run anymore test…

So live with it…
Now I am on my own retort find out what causing it and living with it…

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caregiver49 | @caregiver49 | 6 days ago
In reply to @giulia76 "Hello John, Thank you for your prompt reply and for your welcome to the group. I..." + (show)
@giulia76

Hello John, Thank you for your prompt reply and for your welcome to the group. I hope to find some solace here while sharing my experience with others who can relate. It is very lonely out there. I have just recently started to investigate this further as a client of mine who is now a friend told me she has post-herpetic neuralgia caused by the herpes viruses. She has small fiber neuropathy also and we share the same symptoms. She was diagnosed by an infectious disease specialist and is now going to a pain clinic. Thank you for sharing the article. I will add it to my pile... and I hope to hear from others as well.

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Has anyone tried LDN? (Low dose naproxen ) with any success. Thanks

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