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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The EBV causes both mono and the herpes virus. My doctor did not believe it caused the herpes virus. I printed out the paperwork from the journal of medicine and sat there and watched him read it. His response I did not know it caused the herpes virus. I have tested positive over five years.

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@artemis1886

The EBV causes both mono and the herpes virus. My doctor did not believe it caused the herpes virus. I printed out the paperwork from the journal of medicine and sat there and watched him read it. His response I did not know it caused the herpes virus. I have tested positive over five years.

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Maybe you misstated what you intended. Can you share the link to the journal that states EBV causes the herpes virus? Epstein-Barr is a herpes virus. It does not cause herpes viruses. But it does cause mono and contributes and often leads to neurological disorders.

"Epstein-Barr virus (EBV), or the human herpesvirus 4 (HHV-4), is one of the eight known human herpesviruses of the gamma herpes virus family and is the primary causative agent of Infectious mononucleosis (IM)."
• microbenotes.com/epstein-barr-virus-ebv/
• my.clevelandclinic.org/health/diseases/23469-epstein-barr-virus
• med.stanford.edu/news/all-news/2022/01/epstein-barr-virus-multiple-sclerosis

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Thank you for sharing about EBV and small fiber neuropathy.
I strongly suspect that EBV re-activation is something I deal with and that it may be the underlying cause of my idiopathic non-length dependent small fiber neuropathy.
I am uncertain if there is treatment for viral neuropathy but I am glad to hear that others suspect that EBV may cause their SFN.
I have done loads of testing and we never found the cause of my SFN. Now I may get EBV testing done.
Again, thanks for posting on this topic and hang in there everyone!

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@jgoodall

Thank you for sharing about EBV and small fiber neuropathy.
I strongly suspect that EBV re-activation is something I deal with and that it may be the underlying cause of my idiopathic non-length dependent small fiber neuropathy.
I am uncertain if there is treatment for viral neuropathy but I am glad to hear that others suspect that EBV may cause their SFN.
I have done loads of testing and we never found the cause of my SFN. Now I may get EBV testing done.
Again, thanks for posting on this topic and hang in there everyone!

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I take daily antivirals because I have an immune deficiency that allowed me to have non-stop shingles outbreaks for 30 years (herpes Zoster) before starting the antivirals. The virus wreaked havoc on my nervous system. I take 400mg of Acyclovir 2x a day to prevent shingles outbreaks. I cut back to 1x a day for the last two years in an overall attempt to cut back on pharmaceuticals, and my neuropathy symptoms increased exponentially. I just started back on 2x daily, and my symptoms are easing. I hadn't connected the virus and the antivirals with the neuropathy until I consulted with my infectious disease doctor recently, and he agreed increasing my dose could help with the neuropathy symptoms.

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@inmagic

I take daily antivirals because I have an immune deficiency that allowed me to have non-stop shingles outbreaks for 30 years (herpes Zoster) before starting the antivirals. The virus wreaked havoc on my nervous system. I take 400mg of Acyclovir 2x a day to prevent shingles outbreaks. I cut back to 1x a day for the last two years in an overall attempt to cut back on pharmaceuticals, and my neuropathy symptoms increased exponentially. I just started back on 2x daily, and my symptoms are easing. I hadn't connected the virus and the antivirals with the neuropathy until I consulted with my infectious disease doctor recently, and he agreed increasing my dose could help with the neuropathy symptoms.

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Thank you for this reply, I am a bit slow but I do appreciate this information. I am going to follow-up with my doctors to see if I could try the anti-virals.

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@inmagic

I am convinced that the herpes viruses of Epstein-Barr and Varicella-Zoster do cause small fiber neuropathy. I have no positive autoimmune results in any blood tests or spinal fluid, but I was born with a natural killer cell (NK cell) deficiency. NK cells fight all the herpes viruses and cancer tumors. I grew up with non-stop mono and strep infections and developed chronic recurring Varicella-Zoster when I was 26. I came down with sudden onset SFN symptoms in 2011 (when I was 50) and acute polyneuropathy (GBS) in 2015. I live with a pages-long list of small fiber and autonomic neuropathy symptoms that no neurologist has yet to confirm as SFN because my preliminary tests for autoimmune are negative, and my first punch biopsy was also negative. My symptoms are worsening and debilitating. I am seeing yet another new neurologist this month, one that will hopefully listen. So far, when I mention NK cell deficiency, EBV, or Varicella Zoster, even at the Mayo Clinic (2016), they look at me like I am crazy and say there is no evidence. I am compiling evidence. If you would like to share notes about what we have found, I am happy to do so.

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I agree. I asked to be tested for EBV. After over a decade of ill health I read something that made me wonder about it. Sure enough it had been reactivated in me. I have no idea how long it could have a problem for me. So little is known about autoimmune diseases that doctors have little knowledge regarding them and consequently are of little help. Good luck to all. I am considering LDN. If I have any success will leave a message

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@inmagic

Maybe you misstated what you intended. Can you share the link to the journal that states EBV causes the herpes virus? Epstein-Barr is a herpes virus. It does not cause herpes viruses. But it does cause mono and contributes and often leads to neurological disorders.

"Epstein-Barr virus (EBV), or the human herpesvirus 4 (HHV-4), is one of the eight known human herpesviruses of the gamma herpes virus family and is the primary causative agent of Infectious mononucleosis (IM)."
• microbenotes.com/epstein-barr-virus-ebv/
• my.clevelandclinic.org/health/diseases/23469-epstein-barr-virus
• med.stanford.edu/news/all-news/2022/01/epstein-barr-virus-multiple-sclerosis

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thank you for this article. I recently found out by an intelligent holistic doctor that I have active EBV. I had mono when I was 18. Today at 74 I have poly neuropathy but my neurologist who is a specialist in MS says I definitely do no have MS. My balance is off and I have a gait abnormality. I walk lie a drunken sailor, sometimes What I find scary is most doctors have no idea what all this means.

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