1. < Neuropathy

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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

govisri | @govisri | Jul 23, 2023
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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Please let know if the infectious disease specialist suggested any treatment for post-herpetic neuralgia and the outcome.

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sjg67 | @sjg67 | Jul 23, 2023
In reply to @govisri "Please let us know if and when you see a viral-based expert neurologist, and the outcome...." + (show)
@govisri

Please let us know if and when you see a viral-based expert neurologist, and the outcome. Thanks.

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Will do.

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kfrenc04 | @kfrenc04 | Jul 23, 2023
In reply to @johnbishop "Hi @kfrenc04, It's been awhile since your last post. It sounds like you haven't found anything..." + (show)
@johnbishop

Hi @kfrenc04, It's been awhile since your last post. It sounds like you haven't found anything that has helped you since your previous post last year and that must be terribly frustrating and discouraging. You mentioned in another discussion you were trying to find out if there was special diet that may help with small fiber neuropathy. I did respond to your post but I'm not sure you saw it so I will share a link to my earlier reply here - https://connect.mayoclinic.org/comment/677558/.

Although there is no specific cure for neuropathy, there are a lot of different things we can do for ourselves to make living with neuropathy a little easier for us. The Foundation for Peripheral Neuropathy has a lot of information and resources here that you might find helpful - https://www.foundationforpn.org/living-well/.

I recently had an appointment with a physical therapist who showed me some exercises that would hopefully help me improve my balance. Have you thought about talking with a physical therapist on ways you can help improve your balance to prevent falls?

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Thank you. I was honor a clinical trail somewhere I could be a part of. Do you know of any?
Thank you kindly.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 23, 2023
In reply to @kfrenc04 "Thank you. I was honor a clinical trail somewhere I could be a part of. Do..." + (show)
@kfrenc04

Thank you. I was honor a clinical trail somewhere I could be a part of. Do you know of any?
Thank you kindly.

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There may be others but I did recently see this clinical trial at Rochester Mayo Clinic but like most clinical trials it would depend on the cause of your neuropathy and other factors they want to study.

--- Stem Cells from Skin Fibroblasts in Patients with Hereditary Peripheral Neuropathy: https://www.mayo.edu/research/clinical-trials/cls-20319883

It looks like they have 19 studies on neuropathy at different locations. Here are the search results - https://www.mayo.edu/research/clinical-trials/search-results?keyword=neuropathy&studySiteStatusesGrouped=Open/Status%20Unknown

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1 reply
kfrenc04 | @kfrenc04 | Jul 23, 2023
In reply to @johnbishop "There may be others but I did recently see this clinical trial at Rochester Mayo Clinic..." + (show)
@johnbishop

There may be others but I did recently see this clinical trial at Rochester Mayo Clinic but like most clinical trials it would depend on the cause of your neuropathy and other factors they want to study.

--- Stem Cells from Skin Fibroblasts in Patients with Hereditary Peripheral Neuropathy: https://www.mayo.edu/research/clinical-trials/cls-20319883

It looks like they have 19 studies on neuropathy at different locations. Here are the search results - https://www.mayo.edu/research/clinical-trials/search-results?keyword=neuropathy&studySiteStatusesGrouped=Open/Status%20Unknown

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Nothing for small fiber neuropathy 😞

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sfnmcashatsebv | @sfnmcashatsebv | Aug 2, 2023

hello

why yes! I am a patient affected by long covid i have following relentless extreme small fiber neuropathy/mast cell activation sydrome/hereditary alpha tryptesemia/EBV AB VCA IGG 449.0 RESULT this week.
A very smart dr told me that a virus is driving my small fiber neuropathy, but he couldnt help any further. There has to be a connection with EBV and small fiber neuropathy. Is there treatment for this?

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1 reply
pacer3702 | @pacer3702 | Aug 3, 2023

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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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 3, 2023
In reply to @sfnmcashatsebv "hello why yes! I am a patient affected by long covid i have following relentless extreme..." + (show)
@sfnmcashatsebv

hello

why yes! I am a patient affected by long covid i have following relentless extreme small fiber neuropathy/mast cell activation sydrome/hereditary alpha tryptesemia/EBV AB VCA IGG 449.0 RESULT this week.
A very smart dr told me that a virus is driving my small fiber neuropathy, but he couldnt help any further. There has to be a connection with EBV and small fiber neuropathy. Is there treatment for this?

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Hi @sfnmcashatsebv, Welcome to Connect. There are a lot of different treatments for small fiber neuropathy. The problem is finding one that helps relieve the symptoms. Here are a couple of references that may provide a connection between EBV and neuropathy.

--- Epstein-Barr Virus and Neurological Diseases: https://pubmed.ncbi.nlm.nih.gov/35083281/
--- Is Epstein-Barr Virus Linked to Autoimmune Disease?: https://www.verywellhealth.com/is-epstein-barr-linked-to-autoimmune-disease-4165847.

There are a couple of other discussions you might find helpful since you mentioned mast cell activation syndrome:
--- Mast Cell Activation Syndrome: What treatments help you?: https://connect.mayoclinic.org/discussion/mast-cell-activation-syndrome/
--- Mast Cell Activation: https://connect.mayoclinic.org/discussion/mast-cell-activation/

Can you share a little more about how you were diagnosed with small fiber neuropathy and what your symptoms are?

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1 reply
sfnmcashatsebv | @sfnmcashatsebv | Aug 3, 2023
In reply to @johnbishop "Hi @sfnmcashatsebv, Welcome to Connect. There are a lot of different treatments for small fiber neuropathy...." + (show)
@johnbishop

Hi @sfnmcashatsebv, Welcome to Connect. There are a lot of different treatments for small fiber neuropathy. The problem is finding one that helps relieve the symptoms. Here are a couple of references that may provide a connection between EBV and neuropathy.

--- Epstein-Barr Virus and Neurological Diseases: https://pubmed.ncbi.nlm.nih.gov/35083281/
--- Is Epstein-Barr Virus Linked to Autoimmune Disease?: https://www.verywellhealth.com/is-epstein-barr-linked-to-autoimmune-disease-4165847.

There are a couple of other discussions you might find helpful since you mentioned mast cell activation syndrome:
--- Mast Cell Activation Syndrome: What treatments help you?: https://connect.mayoclinic.org/discussion/mast-cell-activation-syndrome/
--- Mast Cell Activation: https://connect.mayoclinic.org/discussion/mast-cell-activation/

Can you share a little more about how you were diagnosed with small fiber neuropathy and what your symptoms are?

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Sfn pain started about 8 months after initial covid infection , pain began in Sept 2020 . Tested sfn Feb 2021 and biopsy tissue examined tested positive for small fiber neuropathy. A dr told me a few weeks ago a virus was causing sfn. Im not sure but elevated ebv levels must cause an undiagnosed medical problem. Maybe cancer, mold infection i dont know need feep weak and need help to figure this out rapidly. For some reason , xolair of course helps allergy symptoms, but i can tell its helping another sickness that responds to the xolair. Why is my ebv level so high? What other disease does this indicate? I just got diagnosed with a fatty liver

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 3, 2023
In reply to @sfnmcashatsebv "Sfn pain started about 8 months after initial covid infection , pain began in Sept 2020..." + (show)
@sfnmcashatsebv

Sfn pain started about 8 months after initial covid infection , pain began in Sept 2020 . Tested sfn Feb 2021 and biopsy tissue examined tested positive for small fiber neuropathy. A dr told me a few weeks ago a virus was causing sfn. Im not sure but elevated ebv levels must cause an undiagnosed medical problem. Maybe cancer, mold infection i dont know need feep weak and need help to figure this out rapidly. For some reason , xolair of course helps allergy symptoms, but i can tell its helping another sickness that responds to the xolair. Why is my ebv level so high? What other disease does this indicate? I just got diagnosed with a fatty liver

Jump to this post

I know it has to be really difficult trying to deal with so many different conditions. I'm glad to hear the xolair is helping some of your symptoms. Hopefully other members with some experience can share what has helped them. Also, you might want to read through this discussion since you mentioned you were just diagnosed with a fatty liver.
--- Been diagnosed with Fatty Liver: What can I do about it?: https://connect.mayoclinic.org/discussion/liver-1/

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