If you had a terrible case of mononucleosis (mono) when you were a child or teen (like I did), or if you often feel low in energy with no explanation, then this post is especially for you.
Before I get into the details of the Epstein-Barr Virus (EBV) discovery, testing and treatments, I want to mention that I’ve had this post in draft for months.
The other day when I sat down to make myself finish this series, I just stared at the screen for an hour. I took some time to reflect on why this post is so damn hard to write, and here’s what came to me: there is still lots of confusion in both the modern and alternative medicine worlds about the testing, chronic effects and treatments for EBV. I’ve worked with two talented naturopaths and discussed this with multiple functional medicine experts. They all tell me the same thing: there just isn’t a lot of information or standardized tests yet to understand the virus. I’m currently working with a medical doctor who specializes in integrative and functional medicine, and we are still working on treatments and understanding the virus.
With that, I’m going to share my story in the hopes that it can help you—in case you also experience low thyroid levels, an autoimmune condition, lethargy, exhaustion, or days when you just plain don’t feel great.
One last note. This post is much longer than most of my blog posts, but I wanted to give you the full story. So grab a cuppa tea and cozy up—you’re about to learn why you’ve been so tired with no explanation.
A few years ago, I was diagnosed with reactivated (active?) Epstein-Barr. I finally had an explanation—or at least the start of an explanation—of why my thyroid levels are so low and why I feel so tired all the time, despite eating well, exercising, and taking pretty darn good care of myself and my health.
My diagnosis came after I read The Medical Medium and requested an Epstein-Barr test from my naturopath. More on the book and testing in a minute. But first, you need to hear the (waaay) backstory in case something similar has happened to you.
I had strep throat a lot as a kid. It started to get really bad in my early teens, and it seemed like I was in the walk-in clinic every other month being put on another round of antibiotics to clear up the strep. (The dozens of rounds of antibiotics caused an entirely different issue—an unhealthy gut bacteria balance that I’ve been able to clear up with real food, avoiding processed foods, and consuming fermented foods and probiotics, but we’ll talk about that in another post.) My mom grew weary of the cycles of strep and asked the doctors if there was anything we could do. They suggested having my tonsils out. Fifteen is old to have tonsil surgery, but after consulting with different people, my parents decided it was the right decision. I had my tonsils out, which really cleared up the strep, but I never fully recovered from the surgery. Between the hard detox off the anesthesia and the wicked case of mono I developed, I just never really felt 100% again.
Side note: Much later on, while reading The Medical Medium, he talks about strep being a co-infection to mononucleosis, which made SO much sense in this story. I had no idea that was the case 20 years ago, and neither did any doctor I had ever encountered.
Back to the mono. In the six months after the tonsillectomy, I was so tired I could barely get out of bed. It’s normal for a teenager to sleep a lot, but it was getting worse by the day. I was an active dancer and cheerleader and at a healthy weight. I ate pretty well for what we knew back then, but despite being seemingly healthy, I was exhausted all. the. time. My mom took me back to the doctor, and one test later, it was clear that I had mono. Mono is really common amongst teens, so they just told me to rest and that it would pass.
I slowly recovered from the acute mono, as most teens do, but just like when I had the surgery, I never felt completely better.
Another side note: I wish I had a cool story about getting mono, but I was such a prude that it wasn’t even from kissing cute boys under the bleachers or anything like that. I probably got it from sharing pop (yes, we still call soda “pop” in the northwest) with friends. [And eeew, I used to drink a lot of pop in the days before I was a health coach.] It doesn’t really matter how I got mono, what matters is that I was so sick I missed almost an entire semester of my junior year of high school. I started to recover slowly but surely, but never regained full steam.
The next year, a week before graduation, I’m climbing the stairs at school and suddenly have to sit down. I’m winded—a strange phenomenon for a teen who was a dancer her entire life. A friend walked me to the nurses office and I ended up at the doctor that day. A blood panel would reveal that my thyroid levels were so low that I needed to get on medication that very same night. Again, I’m only 17 years old when this happens.
Over the next 10 or so years, I popped that thyroid medication every morning and didn’t think much of it. Except, just like before, I never really felt 100% better. A little, sure. But something always felt off. Between bottomed-out energy levels and a few pounds that I just couldn’t seem to shake, I lived my way into my thirties figuring I’d just have to accept the fate that for some reason, my thyroid quit working.
But then I discovered the idea of reactivated Epstein-Barr. I had my annual physical coming up with my naturopath to have my thyroid medication renewed, and in our meeting, I mentioned that I had just read a book that hypothesized that the virus could be the root cause of my thyroid issues. I knew that a traditional western medicine doctor would have thought I was looney for even asking, but I knew my naturopathic doctor would at least hear me out.
Doctor: “Yes, I’ve been hearing this a lot lately, so I read the book. It’s not that it’s unfounded, but you aren’t presenting with symptoms of active or reactivated Epstein-Barr.”
Me: “I totally hear you, but is it easy to test for? Just for peace of mind?” I said, as she did the thing where doctors take notes about you that feel like complete and utter judgement on a page.
Doctor: “Well, there isn’t standardized testing, but we can check the level of antibodies. One will always show positive for a past infection, but the other will indicate a recent infection. And if that second one is high, we can suspect reactivation because your body has recently been fighting the virus and we know you had mono 17 years ago. But just so you know, I’m writing in my notes that you do not present with [currently accepted] symptoms of Chronic Epstein-Barr.”
Ha! There was the judgy note. But I didn’t mind; she was just doing her job. She’s a great doctor and a really good person.
Me: “How much does it cost?”
Me: Feeling like it was a no-brainer just for the reassurance (and to appease my curiosity), I said, “Great, let’s do it!”
10 days later, she called me and said, “Oh my God, you were right—the antibodies that show recent infection are sky-high.”
I felt so validated—finally!—that I was NOT crazy and making it up. All of my other lab tests except my thyroid panel were normal. Quite a few doctors had told me that there was absolutely nothing wrong with me. But alas, I’d been walking around with a version of reactivated Epstein-Barr, which for me, felt like another case of mono, which comes along with a whole host of other issues.
There are not any (NONE, ZIP, ZERO) treatments for EBV in the current western medicine landscape. Crazy, right?!
Some practitioners don’t even recognize it (along with Lyme) as a disease, which is so sad, because it affects so many people. Once I started researching alternative treatments to calm the virus, everything changed. I felt better than I had in years after having a blood ozone treatment (Major Autohemotherapy) at Sanoviv Medical Institute and incorporating a few natural antivirals into my routine. I’ll write about all of those things in my next blog post, so stay tuned.
Another side note: I also want to mention that the term “reactivated Epstein-Barr” isn’t really standardized either and can mean different things to different practitioners. Some will use the term “chronic EBV” or “chronic reactivated EBV.” That’s how little research is available on this topic. I’m using this term here because it seems to explain best what I’m talking about.
I have to admit, reading The Medical Medium (Hay House, 2015) was a big leap of faith for me. I believe in Spirit, but I also believe in science. I didn’t take the leap lightly, so I would invite you to read the entire book and see for yourself what you think. I almost quit after the second chapter, but I’m glad I didn’t.
Regardless of if you believe in his backstory, the information in that book is having a dramatic effect on the way western medical doctors (and alternative practitioners alike) are looking at autoimmune disease. Additionally, according to one of my naturopaths, this book is not the first time someone has hypothesized that autoimmune conditions can in fact be caused by chronic viruses (So maybe they’re onto something!).
In case you’re curious and think you might have a similar situation, here are some quick notes.
According to the National Institute of Health, the Epstein-Barr Virus is an “ubiquitous human lymphotropic herpesvirus,” meaning it: is a member of the herpes family of viruses, can cause lymphoma-type cancers, and is present in just about everyone. About 95% of the population carries the virus. Once infected with EBV, you carry the virus for the rest of your life.
EBV isn’t anything new. But, as I stated above, modern medicine barely understands it. Western medicine says that we all have it, that some of us get mononucleosis from it, and that it then lives in us, dormant, forever. Modern thought and progressive researchers are now starting to understand that it can reactivate and/or cause a whole host of chronic issues, including chronic fatigue, fibromyalgia, and even some types of cancers. Additionally, some researchers and health experts now believe that chronic active viral infections, such as EBV, may be the root cause of autoimmune conditions issues such as Hashimoto’s and lupus, and may be responsible for chronic illnesses like MS and Lyme disease. EBV can also be what’s considered a co-infection to Lyme disease.
One theory is that EBV becomes deeply embedded in your organ tissue over time. Then as your immune system tries to fight the virus, it appears to be attacking the organ.
Hello misdiagnosed autoimmune conditions. Which is what happened to me.
I had very slightly elevated thyroid antibodies at one point and was diagnosed with Hashimoto’s Thyroiditis, an autoimmune thyroid condition. I definitely had very low thyroid levels, but the idea of an autoimmune condition didn’t sit well with me. Why would my body attack itself? And none of the Hashimoto’s protocols or natural treatments made me feel any different. When I learned that my EBV antibodies were sky-high, it all made sense. I didn’t have Hashimoto’s Thyroiditis. I had an overzealous Epstein-Barr infection still lingering from mono 17 years previously.
I’ve felt great for the last few years, but I’ve been extra-tired recently. I blamed it on my schedule, travel and work (that I love!), but over the past month, I knew something was off.
A blood test in June showed very elevated EBV antibodies again (the type that show a recent infection). There are only a few tests that even look for antibodies, and like I mentioned above, 95% of the population will show some sort of antibodies since we’re all infected with the virus. But if your antibodies pass a certain threshold, your body is actively trying to fight the virus (the reference range is below 9; mine was over 40).
Here’s where it gets tricky: there isn’t a standardized test for this. Different labs show different results. Some show a pass/fail/yes/no result, and some show a level-based result. I’m going to write more in detail about the tests I’ve had and show you examples in my next post, because this blog post is already twice as long as most of my posts. 😉
Remember, healing is never linear. You are your own best health advocate. We must stay vigilant and pay attention to how we feel in our bodies, and advocate for proper testing and treatment if something feels off.
Don’t feel discouraged if this post speaks to you! There are steps you can take. I’ll post more over the next few weeks with the details about testing and alternative treatments for EBV. Hang in there!
If you’ve been feeing really off, tired or sluggish, or have uncontrollable thyroid issues, consider working with a naturopath for an EBV test. Again, more on this in the next post.
Wishing you continued healing,
Instead of prescribing what I think you should do, I help you find what works for you.