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By Linda Tate, Communications Director, Northwest Osteopathic Medical Foundation
We hope you enjoyed the holiday break as much as we did at the Northwest Osteopathic Medical Foundation. Happy New Year, and let’s get started!
This week, we are going to dive into a topic that in the past has been seen as very controversial. Like the diagnosis of Fibromyalgia, Epstein-Barr was first thought to be more of a “psychological” syndrome. Many doctors didn’t take it seriously, and some actually still don’t. Is it “all in your head“, or is it a very real syndrome?
This blog starts with a personal disclosure. I’m biased. Let’s just get that out there right away. For years I was very ill, and no doctor could figure out the cause. I was eventually sent to a kidney specialist in Portland, Oregon, who tested me for a panel of a variety of illnesses that could potentially be causing me some kidney issues. She called to say that in all her years of testing people with this exact same panel, mine was the only one that had come back positive for “Chronic Recurring Epstein-Barr.”
At the time, I had never heard of this diagnosis, so I read everything I could get my hands on about it. I learned that when you get Mononucleosis, that most people heal from this and never go on to get Chronic/Recurring Epstein-Barr (aka EBV). After you are done being ill with “Mono”, it retires into your body and goes dormant, much like Chicken Pox retires and only later can recur as Shingles. Only if your immune system gets compromised (stress, working too hard, getting too tired, not eating right), does it allow for it to recur, next presenting as Epstein-Barr. Even at that, most cases of recurrence are a one time event. Mine, however, was not. It happened again and again, and the titers in my blood panel gave her the information she was looking for.
This began the fight of my lifetime. Over and over again, I would be told this illness wasn’t real, or that I had not been diagnosed properly (never mind that her husband was the top Professor at a local teaching hospital, valued for it’s research capabilities, and he ran clinics on Epstein-Barr.) She warned me that this could progress and become an auto immune disorder. It did. She was right, the other doctors were wrong. This was in the late 80’s. Ahead of her time.
In April of 2018, researchers with the Cincinnati VA Medical Center and the Cincinnati Children’s Hospital Medical Center reported to have found a link between Epstein-Barr and multiple autoimmune disorders. The researchers were able to show that a protein created by the Epstein-Barr virus binds to locations on human genes that are known to be associated with lupus. The research was published in the April 16, 2018, issue of Nature Genetics.
The US Department of Veterans Affairs reports:
“The team analyzed genomic data with a new computer algorithm they created called RELI—short for Regulatory Element Locus Intersection. They found that the protein, EBNA2, has associations with lupus, multiple sclerosis, rheumatoid arthritis, inflammatory bowel disease, type 1 diabetes, juvenile idiopathic arthritis, and celiac disease. The study authors have dubbed these seven conditions the ‘EBNA2 disorders.’
Dr. John B. Harley (MD), one of the lead authors on the study, described the results as ‘astonishing.’ As the authors write in the paper, the results could provide ‘mechanisms possibly explaining the molecular and cellular origins of disease risk.’ The scientists believe that the strategy they used could have broad implications for all diseases: The researchers have identified more than 2,000 different bindings between various transcription factors and genome loci—only some of which involve the Epstein-Barr virus—possibly explaining molecular interactions involved in 94 different diseases.”
What a fantastic opportunity for the ambitious researcher(s)! This virus has played with the lives of millions. It contributes to time loss from work, bankruptcy from medical bills, and eventually disability claims. It causes a mom to miss her daughters recitals, a dad to miss his sons baseball game, and students to miss valuable time from school. It creates depression, suspicion, anxiety and grief. The longer you are ill, the more you struggle to find a meaning in living. This diagnosis robs the host of all that is sacred.
As your life changes from very active, to less active, then morphs into more time in bed than out of bed, you stand, as if outside of your own experience, watching the life you loved disappear slowly…painfully…until the person you once were, is no more. It is in this darkness that you must find a reason to live. A reason to continue. A new normal doesn’t even begin to describe this transformation, because there’s nothing normal left. Your days are put in the “depends on how I’m feeling” category. Always. Not just once in a while. Always.
Having a good support system is imperative. You need good people around you, who love you no matter what. They must understand that you aren’t trying to be difficult, that you aren’t malingering. Going to a movie seemed like a great idea until you were halfway there and the nausea kicked in. A picnic in the park sounded romantic until the sun came out and you started to feel faint. Going to work every day becomes the main goal in your life because, well, bills. Everything else ends up being “secondary” and not important. Even things you normally would never take a pass on, like weddings and holiday parties. If you are reading this and silently nodding your head, know that you are not alone.
We see you. We believe you, and we understand. You are the experts. You know your bodies. The chronic fatigue, weakness, nausea, random fevers, joint pain, headaches, brain fog, sore throats, and inflammation are not “all in your head.” A cure is coming for you. Believe that, and hang on. This video is the hope. It will only take one person, one team of scientists, to break the code. If you are reading this, are you that team? Do you have the passion? We know you’re out there…
The Northwest Osteopathic Medical Foundation is a public charity committed to Advancing Wellness through the Osteopathic Approach. As a charity, we do not represent any medical school, medical association, medical practice, or individual physician.
This blog should not be considered to be medical advice. Your personal health is best discussed one-on-one with your personal physician. Rather, this blog is intended to highlight the distinctive philosophy and practice of osteopathic medicine as expressed by the author and does not necessarily represent the opinion of the Northwest Osteopathic Medical Foundation, or other Osteopathic physicians. The information and opinions are solely those of the author.
