Epstein Barr and Autoimmune Study

Posted by teddyz @teddyz, 3 days ago

A new study this week links Epstein Barr Virus, Lupus, and "other autoimmune diseases". They believe they have found why it happens and that this information would lead to a vaccine to prevent disease. It will be a long road to get to better treatment for us but at least there is some ray of hope for the future.
I have said for a long time that all my troubles started after I had Epstein Barr Virus so I'm feel validated today.
https://med.stanford.edu/news/all-news/2025/11/lupus-epstein-barr.html

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

"The Epstein-Barr virus (EBV), which resides silently inside the bodies of 19 out of 20 Americans, is directly responsible for commandeering what starts out as a minuscule number of immune cells to go rogue and persuade far more of their fellow immune cells to launch a widespread assault on the body’s tissues, the scientists have shown."
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EBV resides in 19 out of 20 Americans (95%) ... but it is estimated that only 5-10% of the population in the United States have autoimmune disorders. The prevalence of Polymyalgia Rheumatica (PMR) in the United States is only about 0.5% to 0.7%, based on recent studies.

There must be other factors why the vast majority of people with EBV don't develop autoimmune disorders. EBV might be one trigger but other infections can also trigger autoimmune disorders.

I believe that infections can "trigger" abnormal immune responses. I have an autoimmune disorder that derives its name from a reaction to an infection. It is called Reactive Arthritis.
https://www.mayoclinic.org/diseases-conditions/reactive-arthritis/symptoms-causes/syc-20354838
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There is a genetic link to Reactive Arthritis. It is called the HLA-B27 syndrome.
https://www.ncbi.nlm.nih.gov/books/NBK551523/
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The demographics of autoimmune disorders are fascinating. Having one autoimmune disorder is a risk factor for others. There are at least 100 known autoimmune disorders. EBV might account for some cases of autoimmune disorders.
https://newsnetwork.mayoclinic.org/discussion/new-study-calculates-autoimmune-disease-prevalence-in-u-s/

REPLY

@teddyz
When did you get EBV? I got mononucleosis when I was 13 and had a really bad case of it which included a 6+ month period of significant symptoms. I have had health issues most of my life (now in my 50s). My mom had lupus/RA/fibromyalgia, Hashimoto’s thyroiditis and heart disease/Type 2 diabetes. I haven’t been diagnosed with these diseases except for Hashimoto’s. There may be a genetic link to those who get EBV and have more significant issues with the virus.

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Profile picture for dlydailyhope @dlydailyhope

@teddyz
When did you get EBV? I got mononucleosis when I was 13 and had a really bad case of it which included a 6+ month period of significant symptoms. I have had health issues most of my life (now in my 50s). My mom had lupus/RA/fibromyalgia, Hashimoto’s thyroiditis and heart disease/Type 2 diabetes. I haven’t been diagnosed with these diseases except for Hashimoto’s. There may be a genetic link to those who get EBV and have more significant issues with the virus.

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I too had mononucleosis at age 13. Missed school for three weeks and had extreme tiredness for almost a year. I’m 79 and in my late 50s diagnosed with Hashimoto thyroiditis, pernicious anemia and atropic gastritis- all autoimmune. I’ve had PMR for 14+ months. I’ve wondered about how autoimmune conditions cluster -

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Profile picture for Mike @dadcue

"The Epstein-Barr virus (EBV), which resides silently inside the bodies of 19 out of 20 Americans, is directly responsible for commandeering what starts out as a minuscule number of immune cells to go rogue and persuade far more of their fellow immune cells to launch a widespread assault on the body’s tissues, the scientists have shown."
--------------------------
EBV resides in 19 out of 20 Americans (95%) ... but it is estimated that only 5-10% of the population in the United States have autoimmune disorders. The prevalence of Polymyalgia Rheumatica (PMR) in the United States is only about 0.5% to 0.7%, based on recent studies.

There must be other factors why the vast majority of people with EBV don't develop autoimmune disorders. EBV might be one trigger but other infections can also trigger autoimmune disorders.

I believe that infections can "trigger" abnormal immune responses. I have an autoimmune disorder that derives its name from a reaction to an infection. It is called Reactive Arthritis.
https://www.mayoclinic.org/diseases-conditions/reactive-arthritis/symptoms-causes/syc-20354838
---------------------------------
There is a genetic link to Reactive Arthritis. It is called the HLA-B27 syndrome.
https://www.ncbi.nlm.nih.gov/books/NBK551523/
-----------------------------------
The demographics of autoimmune disorders are fascinating. Having one autoimmune disorder is a risk factor for others. There are at least 100 known autoimmune disorders. EBV might account for some cases of autoimmune disorders.
https://newsnetwork.mayoclinic.org/discussion/new-study-calculates-autoimmune-disease-prevalence-in-u-s/

Jump to this post

@dadcue There are a lot of diseases that have a genetic component but not everyone with the gene gets the disease. Something in the environment kicks the gene into action. I would suspect the same happens with autoimmune but that's something this article/study didn't address.

REPLY
Profile picture for dlydailyhope @dlydailyhope

@teddyz
When did you get EBV? I got mononucleosis when I was 13 and had a really bad case of it which included a 6+ month period of significant symptoms. I have had health issues most of my life (now in my 50s). My mom had lupus/RA/fibromyalgia, Hashimoto’s thyroiditis and heart disease/Type 2 diabetes. I haven’t been diagnosed with these diseases except for Hashimoto’s. There may be a genetic link to those who get EBV and have more significant issues with the virus.

Jump to this post

@dlydailyhope I had EBV in my early/mid 40s. Some wild neurological stuff immediately after that has now resolved. Hashimoto's shortly after all of that. A little reprieve before the PMR and GCA.
The good news is that I finally got off the steroids at the beginning of September and I'm feeling good. I wake up in the morning without pain and have been able to steadily increase exercise without triggering a flare. Work still wears me out by the end of the week but I recover on Saturday.

REPLY
Profile picture for teddyz @teddyz

@dlydailyhope I had EBV in my early/mid 40s. Some wild neurological stuff immediately after that has now resolved. Hashimoto's shortly after all of that. A little reprieve before the PMR and GCA.
The good news is that I finally got off the steroids at the beginning of September and I'm feeling good. I wake up in the morning without pain and have been able to steadily increase exercise without triggering a flare. Work still wears me out by the end of the week but I recover on Saturday.

Jump to this post

@teddyz

My medical history started after an enteric infection in my early 30's and that infection ushered in one medical problem after another. I needed 60-100 mg of Prednisone for 30+ flares of reactive arthritis/uveitis. The nice thing was remission was relatively easy to achieve and I could taper off Prednisone quickly. The reprieve of remission between flares only lasted for a few months.

My ophthalmologist prescribed the Prednisone for "aggressive uveitis flares" but I was seeing multiple specialists including a neurologist. Those nerve pain medications were too much for me and I stopped seeing all the medical specialists. I decided to treat myself with the leftover Prednisone that my ophthalmologist prescribed.

When I was 52 ... I considered PMR to be a blessing. I received so much attention when a PCP found out how much Prednisone I took during the years leading up to my PMR diagnosis. I got an immediate referral to a rheumatologist who prescribed more Prednisone. The rheumatologist said I should take Prednisone every day instead of the intermittent bursts of high doses of Prednisone I was used to.

Daily doses of 35 mg of Prednisone gave me a temporary reprieve until all the complications from chronic prednisone use happened. The good news is that I haven't needed any Prednisone for the last 5 years. I'm still being treated for multiple autoimmune disorders.

My rheumatologist said it would be impossible to adequately treat everything but one biologic is doing a good job of keeping me off Prednisone. Now my complications from decades (35 years) of Prednisone are improving. I'm counting my blessings that I survived until the age of 71.

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I can't imagine 35 years of prednisone. You are made of tough stuff.

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