Welcome back! 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!!
We left you with a blog by Michelle Jenck which explored our worth. If you missed that blog and would like to catch up, you can click HERE.
This week, we are going to dive in to 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?
Grab a Cup of Coffee and let’s chat…
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 illness’ 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.”
The article goes on to state: “Currently, Epstein-Barr virus is accepted as a causal agent only for multiple sclerosis. Harley says it is ‘curious’ that the same transcription factors associated with MS risk are also associated with the other EBNA2 disorders. Developing new drug treatments or vaccines will take years more of further research. But figuring out the root causes of these conditions will point researchers in the right direction, says Harley. ‘We give the world a starting place for figuring out how these mechanisms operate by bringing the genetic loci together with Epstein-Barr virus nuclear antigen 2‘ (EBNA2).“
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. Feel free to leave your experiences in the comment section of this blog. 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…
I’m 52 and I contracted mono at age 12 and was hospitalized they thought I had hepatitis. I was very sick. Throughout my life I have been sick just not well. After years of doctors appointments I was finally diagnosed with spondyloarthritis 5 years ago. My Rheumatologist has me on HUMIRA and sulfasalazine which isn’t helping. I now am developing scalp psoriasis and I have IBS after reading this I feel like I need to have my blood checked for EBV. This is definitely debilitating and progressing daily. I feel defeated.
Please delete Felix Greg’s comment as well. Another scammer. 🙁
Great article. Please delete the comments by ROSELINE CHARLOTTE She is a scammer.
Thank you for sharing! I came across your article while following Web crumbs for the seemingly arbitrary and unpredictable signs and symptoms I have experienced for years. Both my mother (who experienced a serious case of mono in high school) and has her own ailments, and I have independently wondered that the ebb and progression of symptoms seemed almost viral, and mine seems to now be attacking my thyroid.
Now, as I am deep into perimenopause, all seem to be exacerbated, and I am desperate to find a GP in the Portland metro area who can help me navigate this so I can perhaps mitigate any further damage and better manage my health. The more I read, the more contradictory instructions I find, and I am terrified that I will lose valuable years and be a burden to my husband by simply eating the wrong food that triggers a progression of the virus or disease, or that my HRT will trigger a cancerous response; and I am horrified that I may have exposed my husband to something contagious.
I am on GP number five in five years (one was in a system no longer supported by my insurance, one helped as far as she could, one was sorely unprofessional, and the last two were dismissive and I have since learned branded me with depression being the source of my physical ailments!! I have been a thoughtful, cooperative, and responsible patient, and I would GLADLY have someone tell me “Oh, silly woman, just stop doing this and you will get better!” But when my current GP is not even interested in what has helped me (like Vitamin D3 and Zinc), and my insurance and health care provider is unable to help me find a doctor who has experience with diagnosing, I am looking under any rock I can find. Any suggestions would be sincerely appreciated!
This is my life. Thank you
This comment was sent via the Tillamook Pioneer: Patricia Jacobs says: The other disease closely linked to the EB virus is lymphoma, which I have and am in treatment for – chemotherapy. My oncologist indicated that over 85% of his lymphoma patients at one time had mono. I had a very bad case of mono in university. I don’t know if you could pass this onto the author of the article: Linda Tate, Communications Director, Northwest Osteopathic Medical Foundation Thanks!
Shelly Hester Hordichok: My daughter has struggled with this since her mono at 16. (copied from another page in the comments section of this blog)