Epstein-Barr virus reactivation is becoming more and more prevalent, and maybe the reason your health has declined or why feel so tired all time. Here’s the full story of how I began my journey to learn about Epstein-Barr (EBV) reactivation.
(Quickly, this post has gone a bit viral, and I want to say thank you for the overwhelming response to this EBV story! I recommend reading all posts in this EBV series after reading this one, and be sure to get on my email list below the post for future updates and recommendations.)
Is It Epstein-Barr Virus Reactivation?
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) reactivation, discovery, testing, and treatments, I want to mention that I’ve had this post in draft for months. When I sat down to 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 a lot 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 about Epstein-Barr Virus Reactivation. So grab a cuppa tea and cozy up—you’re about to learn why you’ve been so tired with no explanation.
The Backstory
A few years ago, I was diagnosed with reactivated (active?) Epstein-Barr (also known as Epstein-Barr Virus Reactivation). 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.
The Way Backstory
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 nurse’s 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.
Getting Tested for Reactivated Epstein-Barr
But then I discovered the idea of Epstein-Barr Virus Reactivation.
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 judgment 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?”
Doctor: “$40.”
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) 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.
The Medical Medium Book (Truth, or Complete Nonsense?)
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!).
Emerging Info about Epstein-Barr Virus Reactivation
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 a “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.
My Current Epstein-Barr Reactivation Testing & Treatment
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 shows 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’ve written more about the EBV 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 feeling 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.
How to Take Action:
1. Buy (or borrow) a copy and read The Medical Medium.
2. Leave a comment below and let us know if you’ve experienced similar issues, and/or if you suspect EBV is causing issues for you, too (or if you’ve already tested and gotten an answer!).
3. Stay on my email list for future updates, real food recipes, and healthy living inspiration. I share weekly-ish recipes, tips, and notes with my VIP email community. You can subscribe to my newsletter below this post to get your free recipe ebook and special updates.
4. Be gentle with yourself. 🙂 And read the next posts in this series with tons more information.
Read The Next Posts In This Series:
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Post 2: How to Get Tested for Reactivated Epstein-Barr (EBV)
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Post 3: My Epstein-Barr Treatment & Natural Healing Protocol
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Post 4: Update: Healing from Reactivated Epstein-Barr
WOW! Thank you for sharing this and making me not feel crazy! I’ve had mini 3 different times and I’m 28 – I’ve been feeling lethargic and almost like it’s reactivating again and I’ve been so nervous to mention or see a doctor for it because so often everyone says it’s a one time only thing. Thanks for this info and validation!
I sympathize with your situation and it is extraordinarily similar to mine. However, as an adult I had a severe illness appear seemingly out of nowhere at a point in my life where it seemed I was the healthiest I had ever been. I was covered in an ever worsening rash that looked and felt like chemical burns covering most of my body. After years of having to advocate for myself with countless specialties, I found a doctor that practiced integrative medicine. He identified the correlation to my two prior EBV diagnosis as a late teen and I was well on my way to getting healthy again. You mentioned in your blog that there is no treatment for EBV but I have found that not to be the case. After receiving Ten-pass ozone treatment on a consistent basis my EBV has come under control and I have my life back. In fact within 8 treatments I looked and felt like a new person. The treatment has been used for years in Europe and is now more common in Canada, but the US has a number of barriers to accessing the treatment, mostly because it cannot be patented and thus is not lucrative. But I cannot stress enough that without it and an educated doctor with awareness about the nature of EBV I would likely still be living in horrific pain from my illness.
Has anyone had ear issues and dizziness? After a friend sent me something from the medical medium I’m thinking reactivated ebv could be my issue. Been battling constant strep for the last 5 years and had mono as well. Most recent strep was back to back cases in October and November of 2021. Then in January I suddenly became “dizzy” when driving . My life has been put on hold for nearly 3 months with no answer. Ct scans , blood work normal . ENT exams came back normal and eye doctor said it’s not binocular vision dysfunction. I wasn’t tested for ebv though. I’m at a loss but it seems from these comments that all present differently . Any help would be appreciated .
I do. I get inflammation and ringing in my left ear. Dizziness and feeling unsteady go along with it. After reading about labyrinthitis in medical medium I got tested for EBV in 2017. Results were high positive and it is the same lingering symptom I had when I think I had mono in college. The two things that help are monolaurin and acer campestre from Gemmo. My tests have been consistently high since 2017 but symptoms come and go with the ear. Thyroid issues continue to be an issue. I’ve just started back on the Acer and will be starting the monolaurin soon.
Hi! Lucky me, I’ve had mono twice, once in high school (also from sharing a drink?) and most recently 12 years ago. They say you only get it once, but boy were they wrong, my throat was so inflamed they brought all the doctors in to see it. Sigh.. I also had lymes in middle school.
I was so tired in my early 30’s I had a asleep test done, I was Told I fall into my REM cycle too fast, so I was diagnosed with hypersomnia and narcolepsy without cataplexy (I don’t pass out from emotional episodes, phew!)
But I always wonder if my daily meds for Narcolepsy is really just me attempting the manage my EBV? I have good days and bad days, but most the time I’d rather just sleep it off. Jen in VA
Hi Elizabeth,
This is interesting since my wife recently had some bio scan done and it showed she had traces of EBV in her system. She always feels tired, and has a low appetite, and at the end of 2020 got diagnosed with non-hodgkins Lymphoma. Any thoughts on what can help her feeling better?
Thanks for writing this. I haven’t been really well since I had mono at 17 either. And I too got it from sharing a drink!
Hello! Have you looked into DesBio? They have a treatment for mono!
I am from the UK and I know I have reactivated EBV as I have all the symptoms. I need to know which test to ask for as my GP says there isn’t one!!!! I recently had a 3rd molar crown extracted and became unwell with EBV since the stitches were removed. -As soon as the tooth came away my tonsils were up and I felt as though I had tonsillitis. I had PRF treatment in the cavity. Bloods show elvevated liver enzyme GP unconcerned even though marked abnormal level 49!! Also queries Antibody test ?!!
My son, 14 was diagnosed with covid and mono in Oct 2021. He was hospitalized with seeping tonsils. He was negative for strep at that time. And his throat and a fever were his only symptoms. He was given monoclonal antibodies for the covid and and antibiotic for his throat which ruptured on the first night and gave him immediate relief, otherwise they were going to drain it the next day. He was in there 2 1/2 days and recovered very quickly. Never really had fatigue or problems with his spleen.
Well today he told me his throat has been seeping and sore for the last few days. Took him to urgent care they said he still has EBV and they suggested we get ahold of a surgeon to have is tonsils removed.
So I’m so glad I came across your story. Just ordered Medical Medium (such a fan of all of these book, liver rescue is full of wonderful info)
Oh my goodness. I am sad/glad there are others out there like me. I had a severe case of mono with a strep infection over 40 years ago. I spent many years telling my Doctors that “if it wasn’t for the fact that you can only get mono once, I would swear that is what is wrong with me”. My current physician did a test about 3 years ago and confirmed I had recently fought off the Epstein-Barr virus. Fast forward to 2 months ago, my regular labs (which includes a test to check my EBV, as requested by my doc) came back with a raging case of Mono. And for me these past two months have been the worst episode ever. Thank you for sharing this blog. It is good to know I am not alone.
OMG! I HAD A BAD CASE OF MONO AT 16.
I VERY RECENTLY INSISTED ON A EBV TEST WITH MY NATUROPATH. POSITIVE!
I’VE PROBLEY HAVE HAD THIS REACTIVATION NUMEROUS TIMES.
AT THIRTY EIGHT DIAGNOSED WITH GRAVES DISEASE. I THINK I HAVE FOUND THE ANSWER!
My 16 yo daughter was diagnosed today with Mono. She had strep throat a couple of times when she was young and would inevitably get scarlet fever afterwards. She’s in really bad shape and has been for the past 5 days. Reading about how it can affect her future here scares the hell out of me. I feel compelled to learn as much as I can and I will be listening to the medical medium. Being a very spiritual person already it sounds right up my alley. I appreciate your blog very much and will be following you. I hope to find you on Facebook so I can stay up to date and connect with others ad well. Thank you very much. Please keep my daughter in your prayers 🙏
OMG! I’m not cray cray! I had strep as child a lot my freshman yr got mono turned into infectious hepatitis was admitted and quarantined in children’s hosp missed my whole freshman year young adult diagnosed with EBV then lupus now RA and a heart condition I’m 60 and I’ve been sick my whole life I hope I’m not in my next life!
Hey there,
I can relate to this and would like to share my story to see if anyone had similar symptoms. I am 30 years old and had an awful year. I am feeling sick since 13 months including tickle/soreness on tongue, neck glands, throat and stomach. My hair became very thin and I’ve lost a lot of them. I have very low T-cell, positive ANA, slightly enlarged spleen, extreme tiredness and coughing from the stomach. Some days I feel better, some days worst. Its like something is getting activated from my tongue to my stomach.
I had a full body MRI, gastroscopy, autoimmune test, loads of blood tests including tropical medicine, a bone marrow biopsy and genetic testing on the way. One of my blood test showed reactivation of EBV and shingles but the doctor didn’t think it was any of that. I started taking monolaurin and celery juice and felt so much better for a few months. The symptoms have reappeared unfortunately and I feel desperate as I can’t do anything else.
I can’t figure out what it is, and if that’s really EBV as it doesn’t look like the symptoms. I will be seeing a naturopath soon, but I feel absolutely confused on how to help myself.
If someone share a similar story with the same symptoms, please reach out :))
Xxx
Wow. I feel like I found my people. Your story mirrors mine. Chronic strep-throat and tonsillitis as a child and into adulthood. Had my tonsils removed at 32 (2 years ago). Missed a semester of 11th grade due to mono and have battled the symptoms of EBV for 17 years having no idea that’s what I was up against. Twice in my adulthood I began struggling with nocturnal panic attacks and depersonalization/detachment seemingly out of nowhere. Both times labs were done because I was fearful I was dying of a disease — they both showed elevated EBV numbers. I am currently walking through another season of these crazy symptoms and anxiety issues and my level is 220. It can make a person feel like they’re losing touch with reality — going crazy! It seems like we are all in this together. I am looking forward to reading your other posts and incorporating what I learn into my appointments with my functional/integrative medicine doctor who I recently started working with. Anyone here been told they had a parasite that was allowing the virus to live and release at any given time?
Yes! So it’s been a little over a year for me and I’ve slowly gotten better but my anxiety is still not down enough. It started after a period of intense stress and exploded out of nowhere. I tested my levels and I was right over 200 but haven’t tested them since. Recently, I’ve revisited this idea that my anxiety could be because of ebv and here I am. Yesterday I saw a different naturopath, who is also an energy healer & intuitive, and she is very adamant that parasites are our biggest issues. She ordered me a few supplements but I’m honestly a little worried to try them. Mostly because over the last few years, I’ve been sensitive to things. SSRIs gave me a horrible reaction, l-theanine made me feel dizzy, probiotics made me feel shaky. Idk if it’s psycho somatic bc it still freaks me out. I do acupuncture twice a month and that helps, she’s suspected ebv from the start. It’s just hard for me to tell if the anxiety or the ebv came first. All I know is I’d like to return to the version of me who didn’t have constant anxiety or random spells of feeling off balance & tons of muscle tension.
My junior year of high school, I had acute mono for 8 whole months. 3 months were spent on bed rest. Few months after getting past the big major, acute hump, my gallbladder simply quit working. Just lost all function… had to get it removed. Not much longer afterwards, I got incredibly sick and was diagnosed with lymphocytic colitis – autoimmune disease. And here recently, I have been diagnosed with dysautonomia and inappropriate sinus tachycardia. Ever since I was first sick, I have never felt the same. My body doesn’t feel like its own and I am constantly feeling like my body is fighting against me. I have always been a healthy individual. Since I was first sick, I would tell my mom, “I’m having a mono day”, “This past week has been all mono days.” That was because I would simply have days where I felt like I had mono all over again. A while ago my mom brought up the chronic EBV. I brushed it away because I thought there was no way, and that if I went to my doctor about that I would be disregarded. However, recently I have not been able to ignore how my body is making me feel. I came across this post and it has changed me. I don’t feel crazy, I don’t feel alone. I am now going to reach out to a specialized doctor who might be able to help me with all of this and run tests. As a 20-year-old nursing student, I refuse to accept that I will feel this sick for the rest of my life. I can’t wait to follow your blog for this lifestyle change!
EBV has a relation to POTS (Dysautonomia) . My symptoms of POTS skyrocketed when I got chronic EBV. I had no idea it was a thing. I felt so damn bad, I couldn’t function. I grew up with tonsillitis and strep. Sister too and had her tonsils out. My 23 year old has the same issue now. Her tonsils STAY swollen.
In 2018 I was tested for Epstein bar along with a bunch of other tests I won’t going to details why. I didn’t read it came back negative. My doctor retested me just to be sure and it came back -1/ second time. Skip all the way to 2021 where I was feeling lethargic exhausted and tired all the time. Thinking I had Covid I got tested for that first and was negative. After being hospitalized three separate times for symptoms my doctor couldn’t figure out. I was sent to a hematologist.
The hematologist ran all kinds of tests including a PET Scan. Finally diagnosing me with a primary Epstein-Barr virus infection. this exhaustion is unbelievable. I did not get a rash I did not get swollen lymph nodes in my throat or a fever. I’m just completely exhausted. And I work out on a regular basis which now I cannot.
I just want this to go away I don’t like how I feel. I eat healthy all natural foods I’m so careful what I put into my body. I don’t even know how long this is going to last. I don’t usually get sick at all I’ve only had the flu once in my life. Now I have a cyst on my spleen from nowhere. It is non-malignant thank goodness. It is a shame they do not have a vaccine or a cure for this
I didn’t reread this before I posted it there are some spelling errors. Oops
my test was 715 –it said anything over 30 was postive. Prescribed valacyclovir- will take and see.
sheri
Oh my! This was like reading my life in print. I had strep throat several times a year for years and at 17yo was diagnosed with strep and mono at the same time. Six mo later when no better, I was told I may have chronic mono. The next 16 years I dragged my way through life. Chronic fatigue syndrome is what they called it. I was ALWAYS so tired. At 33yo, I was diagnosed with Hashimoto and chronic mono by a hematologist. Since then I have developed other autoimmune disorders and still very easily fatigued at 51yo. I am always looking for ways to feel to feel better. or improve the chronic fatigue that comes with it all.
Thank you for sharing your story!
Can someone contact me??I have hashimotos and active EBV . It never occurred to me that I might not actually have hashimotos and the EBV might be causing the issues I am experiencing. You say your number was over 40 – mine is WAY higher than that. However, my functional dr doesnt want to treat the EBV until we tackle inflammation , and I am wanting a second opinion.
Inflammation won’t levels won’t come down until you treat EBV.
Hi
Interesting discussion. I personally think bloodwork/bloodtests have failed most chronically ill people. There is so many false negatives etc.
An trained immunologist should just stain your bloodsmear and look for Atypical or Reactive Lymphocytes under the microscope, but this is a old school method rearly used anymore.
Atypical lymphocytes simply mean u have a reactivated viral infection mostly ebv or cmv.
Elizabeth!!
Thank you for this!
My story parallels yours exactly—from the chronic strep throat as a child to mono at 17, to being diagnosed with hashimoto’s as an adult.
Last week I went to do the dr and asked for a full panel blood draw—everything and anything that might explain the chronic fatigue and joint pain I’ve had for the last 6 years. My EBV level was 365!! My Dr insists that I must have recently had mono. That doesn’t resonate with me.
I’m going to check out Medical Medium and subscribe to your email. I’m so grateful for all your insight!
I had a 3 month long extreme case of mononucleosis at age 14, hospitalized twice. I had been a very healthy kid, and after mono i was never right again. At 23 years old i was told i had a severely enlarged liver of 21cm which they accused me of being an alcoholic because my father was. I knew they were wrong based on my few drinks a week but i never had another drink again as i wanted to preserve liver function. At 29 now i have spent the last 10 months suffering autoimmune symptoms, hives, angioedema, GI bleeding, confusion, numbness, chest pain. I am quite curious if this is related to my Mono from 15 years ago, or if i am simply developing autoimmunity due to the fact that my grandmother had RA and lupus. Anyone else have enlarged liver problems?
I got sick with mono after I went to the prom when I was 17 with someone who was 23 and my mom told me the only way I could go is if she drove me to the prom and picked me up well that guy kissed me so I wished I’d listen to my parents and not went out with an older man anyway that mononucleosis almost killed me I got sick and was sick for a month or two and I didn’t want to go to the hospital but finally I could not even swallow my own saliva I couldn’t eat and I lost 20 lb. So I was crying and they were about to do a tracheotomy on me when I got to the hospital my throat was so bad I couldn’t even hardly breathe. they had nine doctors come in to look at my throat because they had never seen a worst case of mononucleosis in their lives my throat had patches of white looking cotton all over it I was covered with white thick patches that look like cotton on my throat.nine doctors were so shocked when they came in to look at me everyone was telling every other doctor to come in and look. I was in the hospital for probably a month I prayed to die I was so sick I actually prayed to die I’m so glad I got over it but when I started looking up exhaustion after you eat and sleepiness I found your blog and I’m so thankful I will get my doctor to test for EBV. Thank you so much for your information.
Our story. My 19 year old daughter who has mild cognitive impairment and associated generalized epilepsy which is fairly controlled was a firecracker during her early years and most of her teen years. In Oct 2018 I heard from school that she couldn’t stay awake. They tested her for many things and found she had “had” epstein barr, I figured pretty recently. From that moment on we have been on a non stop roller coaster, taken her off ADHD meds and her weight has ballooned, her hair is thinning, her skin is super dry and she has acne we can’t control. I have been to countless doctors who all think I’m crazy because most of the tests they run are within range, not great but still in range…I feel so bad for her, I want her to have her life back. We are trying to keep her gluten free and eat as whole and healthy as possible but we just keep spinning our wheels. Any thoughts…?
This resonates with me SO much. I was diagnosed with Mono about two years ago… but my biofeedback practitioner suspects that I may have had it for longer. At the age of 8, I was diagnosed with an auto-immune disease called Behcet’s disease and have honestly had chronic issues since. I have pretty much cured myself through natural medicine, herbs etc. BUT since getting mono I have felt awful on and off for the last two years, basically the same issues that you had just extreme fatigue.. etc even after eating healthy and such.
I currently have Epstein Barr for the third time. I am 41. First time was 25 years ago when I was 16. It wasn’t too bad. I have had strep it feels like a 100 times even with my tonsils out. About 18 months ago my cheeks puffed up and it looked like I had mumps., I had a headache, sore throat, extreme fatigue. I tested negative for mumps but positive for Epstein Barr (46). I was sick for 6 weeks and fatigue m, well it got some better. Over the last year I have had episodes of fatigue, sore throat and headaches but I was only down for 4 or 5 days. Then two weeks ago my cheeks puffed up again. Very sore throat, he ache, body aches, extreme fatigue. This time I knew to get tested. So day ten I got tested and was positive again (56 this time). I am so tired and I have this fog in my head that makes walking difficult. Last Friday I was in the hospital with a new symptom, spleen pain. My spleen is little enlarged but the nurse told me it is an uncommon symptom but it can happen. I go to an immune specialist later this week. I will look into some of your treatments. Thank you for sharing. Not a lot of information out there.
You’re story sounds so much like mine! I am now 39 yrs old. Exhausted ALL.THE.TIME. I was a prude in high school 😀 somehow got mono, probably from sharing a Diet Dew and never felt the same again. I was on dance team etc, too. I have been working with doctors on monitoring my subclinical hypothyroid. I still exercise regularly with TONS of caffeine because I’m TIRED. Well, after feeling even worse recently, a friend mentioned a functional doctor. I went to them and they tested my thyroid, in a range that they deem treatable where as my conventional doc didn’t feel that way. But my Epstein Barr levels..she tested for 4 antibodies: EBV VCA IGG – reference range 18, mine was greater than 750, EBV Early Antigen D AB IGG reference 9, mine was 24, Epstein Nuclear Antigen IGG reference 18, mine was 269 and then there was the one that will always be there I believe EBV IGM. I’m treating with healthier eating, supplements and when my body is ready (due to some other factors) antivirals. I was clinically diagnosed with Lyme’s twice in the past with the bull’s eye rash and feeling like death so we thought that’s what we would end up focusing on. Here we are. Long story short, THANK YOU FOR GETTING WORD OUT. Do whatever you can to make your site more searchable! I actually just happened to come across this now….so many conventional websites are higher on the list 🙁 Side note, I also heard of the Medical Medium and have the book. For the spiritually skeptical, not a good read…but I fully embrace Spirit and felt this is so very helpful! Good luck on your journey! Be well!
Does anyone know a metabolic doctor to address v vitamin 6and twelve elevation with now adrenal issues and 37ct scans after multiple visits for belly pain now issues from that and now my immune system is shot and I’m 57with mono n haven’t been around anyone
I am 57 yrs old and had pretty healthy life until I had downs syndrome kids twins at 34 .I lost a child it was traumatic and this began a multitude of health issues. I have rare b vitamin issue with chronic b6 and b12 very high and now metanephrine labs and urine for adrenal problems and I have been sick for months inflamed severe pain belly pain horrible fatigue and misery after a yr of hell visit after visit being told I’m just depressed etc a PA did epstein barr test and it is active. I had at young age. I’ve always been the tired person but now this. I yet to have any medical help for any of this and desperate for any info etc. Medicine has not been good to me.
I’ve been dealing with the same situation around 30 years or more..
I’ve gone to plenty of md’s, naturopaths, integrated and functional medicine docs..
I did read a little and listened to the medical medium on YouTube and Facebook..
I am 3 months into this cycle again and am glad I found your post..will continue to read and learn
Thanks for the info and personal history…
Thanks so much. My name is Aline and I live in Brazil. I live with cronical Episten-barr infection since 2000. It´s so difficult to find a doctor who belives in your pain! It´s very important to me read your text and the comments about episten barr active.
So i am so confused i was just diagnosed with ebv on my last blood test on 9/16/20,but before this i have had severe obstructive sleep apnea.One of the side effects of sosa is excessive daytime sleep so i was curious if one might have had something to do with the other,according to what i read they do not.So i believe i am fighting 2 battles but i am not sure if the ebv goes away or do i still have it.Totally flipping out i am 61 yrs.old and in good condition very depressed after finding out about the ebv.If there is anything you can tell me to cheer me up it would be much appreciated.Jim
Hello Elizabeth . Thank you for telling your story about epv. I too was diagnosed with it in 2013 and feel I never completely recovered. Like you said modern medicine doesn’t t know how to cure. I also have been diagnosed with ibs and fybromyalgia and suffer from chronic fatigue. I also developed weird allergies to food and odors. I will read the book you recommended because living with this disease us a constant nightmare. Ps. I was not diagnosed with mono and also I am 57 years old.
Wow I’m so pleased to come across this!
At the age of 34 I went to doc with pain in my neck, severe sore throat and swollen glands which had been ongoing for 2 weeks. I was told I was too old to have EBV!
I recovered but would catch every germ my young children bought home from school… I went privately to get a EBV blood test and low and behold it was positive.
20 years later I occasionally go down with viruses that literally knock me for six.
Currently I have had for four weeks, a sore throat / aches / extreme tiredness and if I feel a little better, housework puts me back to square one.
I’m so grateful to read your story. I’m currently researching different things that you are suggesting , particularly Lauricidin.
Thank you 😊!
Elizabeth I felt like I was reading my own life story and I’m from Montana too! I had step constantly growing up and ended up developing an allergic reaction to penicillin due to so many courses of it. They decided to take my tonsils out at 17 my senior year of high school. They couldn’t get them to clear so they had to remove them infected and I literally almost died. I was in the hospital for awhile after the surgery. Everything else is a blur but I’m fairly certain I had mono before the tonsillectomy. It was a bad case of mono that last for weeks. I do get my thyroid tested regularly and the levels fall in the “normal range”. Two years ago my naturopath thought to test me for reactivated EBV and sure enough results came back positive. She didn’t seem to know how to treat it but we tried immune support measures and retested 8 months later – still high. I just retested last
week and it’s off the charts. I will try your protocol and read Medical Medium. Can you share who your doctor is and if they are taking new patients? Or anyone you recommend in Orange County CA? In my google search I am not finding anyone credible sounding. Thank you for all you shared you are saving lives. I
now understand my lifelong struggle with exhaustion and have renewed hope!
I have recently started listening to the Medical Medium audio book after learning about the vagas nerve and am starting to think EBV maybe the cause of my abdominal pain & digestive issues. I’ve seen countless specialists with varying diagnosis and unsuccessful treatments. Including Autoimmune Pancreatitis, IBD, IBS, anxiety (its all in your head disorder) and acused of been just plain unhealthy. I have had steroid treatment where I could hardly get out of bed for months and enzyme treatments and other various medications. Nothing works. I hope that this will finally be the name of the virus causing me all my troubles so I can heal and restore some kind of normal life with dignity.
I truly believe we stumble upon where we need to be or hear what we need to hear!! Diagnosis was Hashimoto’s disease 15 years ago. No meds ever worked. Stroke symptoms 5 years ago and now lupus!! I have started acupuncture and vitamins. Help!!😢
I’m so glad I found this. I had mono in 8th grade (sharing pop) and after high school graduation. Allergic to penicillin, sulfas, had strep and constant ear infections. I was attacked my a dog in 2019 and apparently the stress activated my ebv again. I’ve only recently learned this. I’ve had health issues, chablain lupus, fatigue for a few years, but after the attack I just couldn’t shake it (mind fog, exhaustion) and was covering it up with alcohol. Functioning alcoholic? Drinking by 3:30 every afternoon.. by January 2020 I ended up in the ER with pancreatitis. Quit drinking that day. But brain fog never cleared. Went to holistic dr as my toes (what I thought was Raynauds) were awful and I could hardly walk. Dr tested my ANA, full vitamin panel and EBV. ANA came back positive with Lupus SLE and hypothyroid, EBV thru the roof! Western medical dr laughed at my results as you said.. “everyone has EBV”. No. Not like this. STILL trying to find a dr that can help me outside of holistic care! And it’s even worse now since Covid!! Please reach out to me if you can.
Try Kambo in peru or mexico ♡
I was diagnosed with Mono at a young age….my whole life I have fought chronic mono or reactivated mono I’m 34 yr old and I need help I am exhausted constantly
Well this is just the story of my life, I just finally got a Dr to test me and guess what, it came back as recent or active “mono”, which I am going to say active because, I am so tired I can barely function. Thank you for the information, I have downloaded the Medical Medium book from my library, ordered the supplements and am calling my ND today for some Ozone treatments. PS, I have been previously diagnosed with RA, Lupus, and Hashimotos. Which I thought I had treated and under control ALONG with thinking I had treated the EBV but I guess I was wrong.
I have been running a fever for over 130 days, during Covid19, and have had sooooooo many labs done. Most recently I had EBV VCA testing done, and my IgM and EBNA IgG were both negative, yet my IgG was over 600. I had active mono three times in young adullthood, but that has been over ten years and I am currently negative for mono. I also have hashimoto disease and have had my thyroid removed due to cancer.
All of the info on reactivated EBV is so very confusing. Thank you so much for your posts, I found them so helpful and they gave me a bit of hope during this crazy time! I plan to implement some of your techniques and hope to be on the road to recovery soon!
Wow! Thank you so much for sharing. Until now I’ve never read anything from another human with chronic EBV. I also got very sick with EBV in high school. Except I never got over it. I had to be homeschooled because it didn’t go away for 9 months. Then I became very ill from “interstitial cystitis” and had to see a specialist at Hopkins. He surmised that the EBV attacked my bladder wall lining (instead of thyroid like it did for you). I barely went back to high school and had trouble in college too. I was also an athlete (volleyball and swim). Even 18 years later I still have issues. I catch colds/viruses easily. I have prolonged periods of extreme fatigue and other random symptoms (painful joints/lymph nodes, migraines, painful skin, etc.) that no one can explain. I haven’t been able to find a doctor who understands chronic EBV. Will check out the book, thanks!
I had mono when I was 17 (47 now). I remember the fatigue being intense. Following that, I continued to have bouts of serious fatigue, vertigo, sore throats, fevers and swollen glands for years. No doctor took me seriously. I was told multiple times that it was allergies. By my early 30s I would have to be treated with antibiotics for tonsillitis about every three months and all the other symptoms would still come and go. I finally had my tonsils taken out at 31. The surgery was terrible but, besides occasional bouts of fatigue and a scratchy throat, I have been quite a bit better since then. I’ve always thought it was EBV. Now, my daughter is 16 and is being evaluated for Alice in Wonderland Syndrome, which may have been caused by mono. Some people think mono isn’t a very serious disease since it is common, but I believe it can cause years of turmoil for some.
I had mono when I was in 5th grade and since then every few months/years I’d experience overwhelming fatigue like I had been hit by a bus. My parents and doctors attributed this to my “go-go attitude” and that I was stretching myself too thin. I was an A+ student, three sport athlete, and eventual D-1 athlete at Georgetown. After I graduated from college I finally sought psychiatric help thinking that my fatigue was linked to depression. Nearly 5 years later, my psychiatrist made me go get tested for anything that could explain this fatigue, muscle soreness, and body aching. My titers were through the roof. Now that I finally have an explanation for this fatigue and these symptoms I have no clue where to start so I’m so thankful for this post. It makes me feel far less isolated in this.
Hello! In the midst of the Corona crisis; it now appears what I have is a reactivated Epstein Barr condition?? Super scary and weird. Symptoms came on suddenly almost 3 weeks ago now. Thank you for this! My ND had me do a blood draw yesterday; will get the results including EBV anti body testing, on Tuesday June 2.
I wish I had known about this 3 years ago! 20 years ago I tested negative for mono, but then was hospitalized and diagnosed with ITP (unknown origin low platelet disorder). In the last three years I have felt crazy and almost like a hypochondriac for insisting something IS wrong with me. Then last year, my thyroid plummeted and I was diagnosed again with unspecified hypothyroidism. Only recently when I switched to an integrative medical team, did they test for EBV. I had no idea, and it explains so much now and from the past.
Thank you for your post. After two months of being sick and unable to get off the couch and having my husband having to handle both work and our three kids I finally went to doctor and sent in for lab work and just found out I have EBV. The two months of being sick was mono and now I am getting an ultrasound to check my spleen. I’m a 47 year old woman and married with three kids. My husband seems to think it’s no big deal since it’s so common but I am terrified! I did so much research on the internet and it all was either too scientific or to general AND then I came across your post. Which lead me to Medical Medium which was all I needed. I cried happy tears thinking ok, she has what I have and she is vibrant and happy and then combined with the book I feel like I have a chance of living a normal life. I hope. I’m still scared and I still cry but now I have a road map for healing, so thank you so very much.
I have been struggling with what the drs call a viral infection they can’t figure out for about 3 months now. I think its related to mono that I had at 12 years old. I had the blood test done and they found that it had been in my system but there isn’t a current infection. I have had rashes, tight neck and lressure in my head. Fevers for 2 weeks, joint pain, muscle spasms.. neurological effects as well. My question is. Can you have a relapse but not show a current infection but past infection?
I had mono this past October I got extremely sick and even went into early liver failure. I finally started feeling somewhat better but In May ai got sick again. My blood tests confirmed I have mono again. I have had so much pressure in my head and extreme neck and back pains. I have tried everything and nothing seems to help. I feel like the virus is attacking my spinal cord. When the doctor gave me prednisone the inflammation finally came down and I felt a little better but once I was done with the course all the inflammation in my back came back.
Update was prescribed – Rizatriptan a migraine medication. It does seem to help with the pressure in the head.
I think I’ve got stage 4 Epstein Barr, in the nervous system. I’ve been on Medical Medium journey for over a year. Still layers of issues and challenges. Very hard journey.
Thank you for this post, I am going to continue reading your blog because I have recently been extremely sick for 6 weeks and my doctor tested me for Epstein-Barr and my numbers came back above 500. I am only now able to get up for a few hours at a time to cook for my family. With Asthma and heart problems on top of this it has been devastating for me. I will be seeing a new Oncologist the beginning of May because I have Hemocromatosis. I find it fascinating how autoimmune diseases tie into thie because those run in my family. I also have arthritis