Small Fiber Neuropathy and Epstein-Barr Virus

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

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

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.

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

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…

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

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.

I used it several years ago, and it helped a lot. I had to quit for a series of surgeries, and when I started back up on LDN two years later, it stopped working and caused significant hair loss. I just stopped retaking it this week. It does work for a lot of people! It did for me in the past, but something has changed in my physiology that keeps it from working now.

I think I am in a similar boat. After years of viral infections when I was younger, and then a confirmed lengthy bout with epstein-barr about 5 years ago, followed by a period with covid and long covid, I have peripheral neuropathy. All of my doctors except for my PCP look at me like I am being ridiculous when I bring these viruses up. My PCP takes it seriously, but there is not much he can do about it. The only things that seem to be helping me are a healthy, low sugar, low inflammatory diet and exercise every day.

It's discouraging when our doctors don't consider what we say. I had 25 years of non-stop shingles outbreaks and countless doctor visits, being told it's not possible to have ongoing shingles; it must be hives. Finally, a new PCP believed me, and I started taking antivirals. Five years later, an immunologist confirmed it by discovering the NK cell deficiency. It's all a mystery to everyone, and doctors don't have time to do the necessary digging to find answers. Diet, supplements, herbs, and exercise help me a lot, too!