*Note: this post was last updated in Oct.2019 (see below).
Not long ago, I read an excerpt from Anthony William’s book Medical Medium (Hay House, 2015). The chapter, titled “Epstein-Barr Virus, Chronic Fatigue Syndrome and Fibromyalgia,” starts out with a bang.
“The Epstein-Barr virus (EBV) has created a secret epidemic. Out of the roughly 320 million people in the U.S., over 225 million Americans have some form of EBV.”
Before reading this book chapter, if someone had played the word association game with me and said “Epstein-Barr,” my response would have been “mono,” as in mononucleosis (and then if they said “Christmas,” I would have said “The Pogues,” but that’s another story). In relation to EBV, that’s the only response I could have given, the only association I knew. But according to Williams, that’s merely Stage Two EBV. In its other three stages, it lives on inside us, either hanging around, waiting for the opportune time to mess around, or, in its more diabolical stages, acting as the catalyst for all sorts of ailments and diseases, from tinnitus to thyroid disorders to an inflamed liver or spleen.
As the chapter title suggests, EBV has also been linked to chronic fatigue syndrome and fibromyalgia, two highly mysterious and misunderstood illnesses. As I know a few people who suffer from symptoms that have thus far been undiagnosed, I emailed the article off to them, thinking it might shine some new light. Imagine my surprise when, days later, I visited my naturopath and we went over some recent blood test results. There, in huge, glaring numbers, were the indicators of my wildly reactivated Epstein-Barr virus. In fact, the numbers were so high that it seems the bugger has been holding a party for quite some time, keeping the noise level just low enough that nobody got ‘round to calling the cops. (If you are interested in the test names, ranges and my results, I’ve listed those at the bottom of this post.)
My doc immediately put me on some antiviral meds: one is a homeopathic immune system booster, the other is Valtrex, the herpes drug (and yes, when the pharmacy tech noticed what it was as she handed it over, she did jolt to a stop and stutter for a second. Stigma abounds, even with professionals). That was a month ago, and I expect to be on them for a while. And do I feel better? Well, that begs a different question: how did I feel to begin with?
That’s where it helps to examine what your normal looks like. If I’ve had a reactivated EBV for a while, then maybe my normal—the one I’d grown used to—is out of whack, and I could potentially expect a better and new normal. Prior to this diagnosis, I wasn’t complaining of anything seriously wrong with me, but I wasn’t jumping up and down with boundless energy, either. My common refrain was, “I feel like for someone of my age and fitness level, I should have more energy.” I had my thyroid tested, and it came out normal. I had my cortisol levels tested: also normal. All the other things on my blood panel were fine. So, can someone have a reactivated EBV piggybacking on their immune system and still be within standard testing ranges on common diagnostic tests?
As you might imagine, not everyone believes that a reactivated Epstein-Barr virus is linked to all of the maladies that William lists. (For those grounded in science, hearing about it from a book called Medical Medium, as in “Spirit tells me what’s wrong with you,” is sure to raise eyebrows.) As for the question I posed in the title of this post, I’m not even going to try to offer an answer. What I’m learning through my own personal health journey, however, is that the human body is far more complex than we give it time or credit for, and sometimes, accepting your state of wellness as being as good as it gets might be too narrow an interpretation of normal.
You’ve got just one life in this very complicated body, and if it’s been running on three cylinders for a while, it may require a long and sustained recovery period before you begin to glimpse a golden horizon. To set off on that journey, it helps if you park your skepticism (and that of others, trained professionals or not), take the time to listen, learn and notice, and see where it leads you. I’ve parked mine, and I’ll continue to treat this reactivated EBV and see what happens. I don’t expect to run a marathon, but a little more get-up-and-go would be swell. And at least the herpes drug is cheap.
As an adult, have you ever been tested or treated for EBV reactivation? And if you had it, what was it like for you?
Postscript: here are the names of the tests, the standard ranges, and my results.
- EBV Ab VCA, IgM1 – Range is 0.0-35.9 U/ml – My result was negative (less than 36)
- EBV Early Antigen Ab, IgG1 – Range is 0.0-8.9 U/ml – My result was 40
- EBV Ab VCA, IgG1 – Range is 0.0-17.9 U/ml – My result was 140
- EBV Nuclear Antigen Ab, IgG – Range is 0.0-17.9 U/ml – My result was 568
Updated Jan.5, 2017:
It has been a year since I first wrote this post, and I have a few things to add. First off, after taking an antiviral all year, my EBV numbers went up. Higher. Worse. My doctor is attributing this to the fact that I had a chronic bacterial sinus infection, sinus surgery in August and nasal valve repair surgery in Nov. It’s hard to heal a virus when your body is still being beaten up.
Also to note, in November 2016, the National Institutes of Health (NIH), a federal government organization, added Epstein-Barr virus (EBV) to its most recent update of known human carcinogens.
Updated Oct.3, 2019:
Hi folks! Since the last update, I’ve felt better, and then worse, and better, and worse. I didn’t re-test for almost two years, and my doctor continued to treat based on symptoms. As I continue to have significant fatigue, we just revamped a new treatment plan that essentially consists of four things and is based on the muscle testing that she did with me (i.e. your responses might be different). 1) I’m back on Valacyclovir, 2) I’m taking Holy Basil, 3) I’ve got an Isatis and white peony tincture, and 4) I’m back on Lauricidin.
In addition, I’m taking a new/different kind of probiotic, and continuing with spirulina.
As for test results, they went down from my last round of testing, but are still showing active EBV.
Laura’s EBV Test Results | Aug.2019 |
EBV Ab VCA, IgM1 | <10 |
EBV Early Antigen Ab, IgG1 | 41.8 |
EBV Ab VCA, IgG1 | 135 |
EBV Nuclear Antigen Ab, IgG | >600 |
Jo-Anne Teal (@jtvancouver) says
Intriguing article, Laura. I am ashamed to say that I thought Epstein Barr *was* an old moniker for chronic fatigue.
I agree completely with your point about the complexity of health, and our unwillingness or unknowingness (I like to make up words) about our health status.
Although I’m sorry to hear the results of your test, I’m glad to know you are treating it with both traditional and natural medicine.
Laura Zera says
That’s interesting! So in, ahem, more polite circles (haaa!) that was acknowledged, hey?
Re: complexity of health — all I know is that when I go to the acupuncturist and she sticks a needle in my shin to open up my sinuses, that there’s a lot I don’t understand.
Thanks for reading, Jo-Anne!
Val says
I must admit I’ve never heard of it before, Laura. What I notice with my advancing years is a tendency to all sorts of odd ailments and intolerances. I wonder if this is due to some umbrellla virus or syndrome. The problem here in NL is getting anyone to listen to you in the first place!
Laura Zera says
I’m kind of surprised to hear that about NL, I always figured that it would be a benevolent health care culture!
And regarding odd symptoms, I do believe that there are quite a number of viruses and bacterial infections that people carry without knowing it and that can be low grade but still wreak havoc. Lyme Disease is another one of those.
Jeri says
I’ve heard of EBV, but only in the vaguest sense of what it is. Actually, in the last couple of weeks I’ve been looking at a few of your older posts about the link between diet and mental health. I’m thinking of the one about having a healthy gut. For whatever reason, I seem to have the constitution of an impenetrable block of rubber. That I get by on so little sleep and don’t get sick often boggles my mind. I can also eat practically anything. But even then, I wonder at the ways better all-around habits (especially in the area of sleep) would work together to improve my outlook. Health works in mysterious ways, but it’s good to see more doctors giving kudos to the holistic side of things.
Laura Zera says
It’s possible that you have both a super-strong GI and immune system, and that there are things that could get better and that you can’t identify symptomatically, e.g. inflammation hides out in all kinds of ways. I believe food plays a massive role, and some supplements can really help too, such as Vitamin B complex and Vitamin D. And sleep is so important. You may be getting by on little sleep, but that could be having as-yet unseen effects. I’m also a big fan of melatonin, taken for a couple of months at a time to get the body’s rhythms to a nice, sleepy place when they’re supposed to be.
Thanks for reading, Jeri! xo
Sandy says
I had a horrific run with EBV back in 2011, took until the fall of 2013 before my blood work came to a normal range. At that time the doc said my titer numbers would forever run high. But I felt good and life resumed. In the last year and a half I have been combating major stress in many areas, in mid-May of this year(2017) I hit the wall again. Had a ear infection, sinus infection and now the fatigue. I haven’t been able to work, I am going to see an infection control doctor this coming week, hoping to have “answers”. It is discouraging, I look for that piece in the day were I feel like I can navigate. Rest and rest and rest, is all I know. I eat well, and DO know that nutrition is critical. I guess I just want someone to say, THIS WILL END!!!
Laura Zera says
Hi Sandy,
I’m sorry that we’re meeting over a shared EBV infection! Dang. I appreciate that you shared your experience; I’ve also heard that numbers can run high for a long time, or maybe forever, so it seems a lot depends on how you feel. My doctor told me recently that of the four EBV “scores,” it’s the EBV Early Antigen Ab, IgG that is the most important and revealing. I hope you do get some answers, or at least, some suggestions for new ways to treat it that will help you find your way back to your normal.
Matt C. says
Thank you for sharing your story regarding EBV. I recently was diagnosed with having reactivated mono (but only symptom had been a rash – even though that wasn’t why I went to my dr to begin with). Now, my initial reason for the dr visit is still present. Turns out that I have b-cell non-hodgkins lymphoma. Word of advice, stay on top of your EBV and fight like hell.
Laura Zera says
Oh my word, Matt, I’m so sorry to hear you’re dealing with lymphoma now, and I appreciate your sharing as a cautionary note, as I sometimes get a little relaxed about it — my test numbers basically haven’t moved much in the past 18 months, and my fatigue is still present. I wish you all best as you beat your illness. I don’t know how you feel about mind-body work, but I’ve previously used a mindfulness/relaxation resource in surgeries, and it’s also a great resource for fighting cancer. It’s called “Prepare for Surgery, Heal Faster” by Peggy Huddleston (book and mp3), and like I said, despite the name, it’s a powerful tool even when surgery isn’t the primary course of action.
Kirk says
Our health situation sounds almost identical except I am showing other major signs of sickness. My mornings take hours to get going out of bed. my body feels so swollen, especially my arms / hands and feet / legs and it’s incredibly painful but they don’t look that swollen. Medication? I don’t know what that would be since I can’t get a doctor to do a single thing for me other than agree there’s something wrong. Count yourself lucky that you have a doctor that actually tries to help you. My decided a few weeks back I’m going to handle it for as long as I can and then just commit suicide.
Laura Zera says
Oh no, Kirk, I’m so sorry! That sounds really awful. But you’ve had the Epstein Barr tests and your doctor still doesn’t know what to do?
I have a habit of joking about offing myself when my body or mind has packed it in because I don’t wish to ever end up in a nursing home. Just to check in with you — if you’re having any serious thoughts about that, please call someone, whether a family member or a suicide prevention hotline. If you need a resource, let me know and I will get you some phone numbers.
I hope you make some progress on your health. And seriously, if your doctor isn’t helping you, change doctors. I gave up on my GP as her view was too traditionally narrow. Seeing a naturopath as my primary care provider has been life changing, and it is covered my standard medical insurance.
All best to you.
Kirk says
I changed doctors many times. Let’s see: 4 primaries, 2 neurologist, 2 urologists, 1 rheumatologist, 1 naturalist, and a few more I can’t think of. I told several I’m in so much pain I’m ready for suicide in the mornings but hurt to bad to do it. Doctors and nurses are all scum in my book. They have lost their way when punishing an unknown drug addict is more important than caring for their known patient. When the life of an individual was thrown away to be an addict is more important than a patient’s life crumbling before them. Their choices left me in pain to the point I can’t work I have another four or five months saved up for Bill and then what? Is putting a horrible strain on my marriage. My friends have all distance themselves. All because some scumbag doctors don’t want to treat my pain. I hope everyone of them gets what they deserve
Laura Zera says
I’m so sorry you’re in so much pain, Kirk. And pain has an effect on mental health for sure, so I can understand how you’re feeling hopeless and angry. I do believe that there are amazing and compassionate doctors and nurses out there, and that you haven’t found yours yet. Please keep trying. The opiate crisis has put many doctors under the microscope for their prescriptions — I just heard that AG Sessions charged dozens of people yesterday — so my hope is that you find a professional who can come up with some other treatment protocols that will alleviate your pain without the danger (to you and them) of having to prescribe a heavy painkiller.
JosieD says
I’ve just received this diagnosis and my functional medicine practitioner is going to have be do 10-20 sessions of UVBI treatment where they take a few Tablespoons of your blood out of your body, pass it through a UV light to kill the virus and put it back into your body. They reassess after the first 10 treatments to see if you need to continue. I’m not sure if this will help any of you, but I thought I’d share.
My stats: EBV Early Antigen Ab, IgG, 12.1
EBV Ab VCA, IgG, 318
EBV Nuclear Antigen Ab, IgG, 245
Laura Zera says
Josie, I’m so glad you did! This is very interesting. Of course, I’m sorry you’ve got it (!!!) but if you would be willing to come back and update here on how your treatment goes, that would be amazing. I’m definitely going to discuss with my doctor. All best to you, and good luck!
JosieD says
Absolutely, I will report back. It’s pretty scary, but explains why I’m so low energy. Clearly job stress has done me no favors. On top of that, I was tested for Candida and that is through the roof as well. I’d recommend others be tested. It can cause a lot of the same symptoms.
I started out with these tests because I’ve been gaining .75-1 pound per month for over 4 years now and cannot lose even in full ketosis…I still gain.
I’ll update in the next 6 weeks.
Laura Zera says
Thank you!!
Gawd, yes, the low energy. Gah!
The candida is something I don’t think I’ve been tested for and never thought of considering. And re: weight gain — I’m guessing you’ve been tested for thyroid, and/or tried some adrenal support treatments? I think thyroid is one of those tests where the normal range isn’t really everyone’s normal range.
JosieD says
Yes, full workup. Not only is it normal, it’s optimal! Go figure. Hashimoto’s antibodies came back a little elevated, but nothing to indicate full on Hashimoto’s. I originally came across Epstein Barr when I did an internet search trying to figure out why I have a nodule on my thyroid that has been fully evaluated and biopsied (benign, thank God). It hasn’t grown in the last year.
My research came across an article that noted the EBV attacks the thyroid and the body forms a nodule to protect it, yet it persists.
It’s quite a journey figuring all of this out and expensive too. I haven’t been able to get much covered by my insurance.
I’d love to know what your doctor thinks of UVBI treatment. I’m a tad nervous about it.
Laura Zera says
I was about to follow up with her via email, so I’ll add in a question about UVBI and let you know!
It is such an arduous journey, all made possible by the wonderfully complex human body. It’s a crazy contraption. And wow, does it ever make you value a good and persistent doctor, hey??!!
Laura Zera says
Hey Josie, I’m wondering how your treatment went? Hope it had a significant impact for you!
Sara says
Thank you for posting this. I am also having a reactivation of EBV. My early antigen is 18.5 and my IgG is 68. I had severe mono 22 years ago. I have major symptoms of CFS and my hormones are out of whack. I read Anthony’s book six months ago, but I was in denial that this could really be an EBV reactivation. The lab tests say it is happening. My muscle pain gets worse with each passing day. And I’m on a stimulant to keep me awake all day. I’m scared that it is now a known carcinogen. Thanks again for posting. <3
Laura Zera says
Hi Sara, lovely to meet you here, sorry it’s as part of this “club.” From what I hear, it can be a long process to get it under control again, so persevere, and I hope you find a treatment that works and gets you back to your former self. And if your doctor doesn’t give you the time and care you need to figure it out, please seek a new doctor. I’ve also heard that the standard treatments (if they treat it at all) are pretty quick and shallow. Good luck to you!!
Ali says
Diagnosed today. Doctor has me on Liposomal Gluthathione, CurcumaSorb, Probiotic GI, Colostrum, Immuno DMG and 25,000 Vitamin D. Plus intravenus IV of huge amounts of Vitamin C plus others. When episodes come on, I’m supposed to take the Valtrex as it is supposed to suppress the EBV.
During an episode I take Gabapentin to sleep and help with nerves firing, then a stimulant like Accutane during the day because I don’t sleep and it helps with keeping my days and nights on schedule. When episode subsides, continue this for 3 more weeks then wean off.
I have a history of Shingles, CMV, and Mono.
Am curious about the blood “doping” too, so please share your experiences with that. I feel like EBV should be eradicated but my doctor says nothing really aggressive helps without major possible side effects.
Chronic CMV can lead to Shrogren’s (Sjogren’s?) just FYI, so watch that. These are all so closely related. All my other numbers are as healthy and perfect. The trouble with this diagnosis is that I look healthy and normal aside from the weight gain. People cannot believe I’m in constant pain. All the best to everyone!!! Hope this helps someone.
Laura Zera says
Ali, thank you so much for sharing your info — there’s lots here that I’ve never heard of and plan to look into, and others will also find it useful, I’m sure. It’s so interesting to me that you’re taking Valtrex as needed, whereas I’ve been on it for almost two years, twice a day (and with little effect). What’s also interesting to me is that your episodes sound very similar in symptoms to Lyme disease, but as you say, there are close relations between many conditions.
Good luck with your management of EBV and other conditions, and feel free to come back and update if you have time and energy — we’re kind of in a new/gray area of treatment, it seems, or at least for some doctors/regions. All best to you! xo
Lindsey Sanders says
I’m sorry to hear you’re going through this Laura . To be honest, it does feel good to know I’m not alone, but I wouldn’t wish this on anyone.
I’m 33 years old, female, personal trainer, very active and healthy. Last November I experienced my second EBV reactivation. I first had mono at 11 and missed half a school year. Then reactivation at 21. That episode lasted roughly 3 years.
For the most recent reactivation, these past 10 months have been some of the hardest of my life. I initially lost 25 lbs and was unable to eat almost anything. The fatigue was debilitating and accompanied by night sweats and infections. My EBV VCA IGG went from 74.5 to 240 between Nov -December 2016.
Now, it’s almost a year later, I feel like I’ve turned the corner for the most part but I still get fatigued easily.
I have researched EVB reactivation almost daily for 10 months. I feel like I’m more educated on it than most of the doctors I see. I make sure I read reputable scholarly articles and get my info from good sources, NIH, up-to-date, physicians reference, etc…
A few key things I’ve learned;
1) Most doctors don’t really understand EBV. I am under the supervision of an Infectious Disease doctor, an ENT, and an Internist and my primary. They all disagree about my test results and what they mean.
2) There is a very insightful article, in the American Journal of Blood, (I’ll try to link the article), that gives unprecedented data on specific EBV blood serum values being a pre-diagnostic for Hodgkins Lymphoma. Google will pull that one up.
3) It’s not just that EBV is linked to cancer, it is, but there’s specific patterns that are more closely linked to developing either Hodgkins, (Wester Countries) Nasopharyngeal Cancer (South East Asian countries) or Burkitts Lymphoma (West African countries).
4) The patterns that have a 4 fold increase in developing HL are low or non existent EBV VCA IGM titers, along with very elevated EBV VCA IGG titers. In that exact context. No IG M, High IG G. These patterns can be seen as far out as 1-4 years before HL diagnosis.
5) The absence of IGM can lead doctors to believe that you don’t have an “active infection” and that the presence of elevated IGG is suggestive only of past infection. Not true.
6) The very nature of a “reactivation ” implies it’s not a new infection so IGM is not necessary. The rapid elevation of IGG should be more concerning as it suggests that the “old, latent” virus is replicating while going undetected by the immune system.
There are journal articles and information that gives rough estimates on sera volume ranges that can be helpful to identify your risk factors as well.
I obsesssed about developing HL because I was placed into a cancer surveillance program by my infectious disease doctor due to how high my IGG titers were and my inability to gain weight.
That was 5 months ago and I’m feeling much better and more positive now. I’ve gained my weight back and no more night sweats.
I too read Anthony Williams book and tried to implement many of his therapies. Another book that helped me a lot was Mind Over Medicine. I’m sorry I don’t remember the Author’s name but it’s written by a female doctor and it’s very good.
I hope some or any of this has been helpful. I’ll keep you in my thoughts. Thanks for sharing your insights and experience.
– Lindsey
P.S. this post is probably full of spelling and grammar errors. It’s late and I’m too tired to double check but I think people can get the gist of what I wanted to say 🙂
Laura Zera says
Lindsey, your research and knowledge is a gift to other readers, so thank you so much for sharing it here. I’m compiling a document for my next ND visit and will include some of your points in it — I haven’t done the research that you have and so am not as fluent.
It’s interesting to me that so many people who have commented here, including yourself, have had an identifiable bout of mono. I don’t think I ever had it. Or maybe I did and didn’t know it. My main issue has been decades of sinus infections (and I’ve been told that EBV likes to hang out in the gut and in the sinuses).
I’m so glad to hear you’ve turned a corner. Would you be willing to talk a bit about your treatment protocol?
All best to you!
p.s. Mind Over Medicine — Lissa Rankin. I Googled it. 🙂 I like her approach in general, and used to be subscribed to her newsletters .
Sue says
Hi Laura! I just tested positive Thursday for EBV and I don’t believe I have had mono either but I too have sinus and excess mucus in throat. Went to ENT and they said my sinuses looked fine?! So boggeling and frustrating! Have you seen an ENT for your sinus issues and did they see anything?
Sue
Laura Zera says
Hi Sue! Welcome! Let me ask this: are you prone to sinus infections? And do you have trouble with a plugged Eustachian tube?
I was getting sinuses infections every year or two for about 20 years. I waited until last year to have sinus surgery because of the cost, however the surgeon’s comment was “lots of gunk in there, you probably should have done this five years ago.” So I was walking around with a chronic bacterial infection for a long time, basically. And that makes me wonder: what wore down my immune system first, the reactivated EBV or the chronic infection that provided a nice host for EBV? So if you feel that your sinuses are a weak point, I’d look for another ENT. Did the first one do a CAT scan?
In your comment to Lindsey, I saw you asked about elevated numbers. I’ll just say that my ND said that given that the high end of the range is 17.9, even a number of 200 or 400 is not good. And a lot of us are testing at >600, at which point the tests don’t differentiate with a specific number. But given the range, I feel like anything more than double, which would be 36, is significant. And we all seem to be a lot higher than that, which is perhaps why we feel like trucks ran us over and we start seeking answers and getting tested.
Good luck in your healing journey and I hope you have success. Since you were also looking for treatment inputs, I’ll add that I recently stopped taking Valtrex, which wasn’t moving my numbers at all, and started on something called Viressence, an herbal tincture. This was recommended by my ND, and I place great trust in her because she was an utter genius in helping my husband recover from Lyme disease.
Lauren says
Laura:
I so relate to your wording as I often say “I feel like I’ve been run over by a truck” when my pain is at its worst. I was diagnosed with fibromyalgia about ten years ago and was only tested for CAEBV a few months ago after a long bout of extreme fatigue way beyond my normal level of fatigue. My EBV Viral CAPSID AG IS 241/MY EBV NUCLEAR AG IS 369. I just learned my 13 year old daughter has it also with higher numbers than mine.
To date I have not managed to keep my pain/fatigue at bay though I have been working so very hard w/various traditional and now more non -traditional healthcare providers. I am unable to work, am the mom of two, and often struggle to get through the day. Social life in ruins. The emotional toll has been indescribable and no one around me really understands, since of course I look fine on the outside!
I am half way through a course of Chinese herbs (for treating chronic viral infections) and a recommended homeopathic that I purchased through a pharmacy in Germany. Half way though and no improvement yet. Next recommended steps: Vitamin C infusions and/or 6-9 month course of antivirals. Would be interested in hearing if that blood cleaning idea works!
Laura Zera says
Hey Lauren, gah, I can’t even imagine what it must be like to be so fatigued AND have kids to take care of (and to find out your daughter has it, too!). I bow down to you for soldiering on. It’s especially hard when your closest circle doesn’t understand. I’ve experienced that, too, also because not many people really know about EBV.
I’m not sure if the test bands have different names, depending on who administers the test, because “EBV Viral CAPSID AG” is new to me. Do you know much about what that number indicates? I think the “nuclear” number is the same band as the fourth result in my test, and is the one that I’ve been told can sometimes be high forever, but doesn’t indicate if your body is *currently* making antigens, only that your body has made them in the past.
Vitamin C infusions vs. blood cleaning — my ND said her patients have had better luck with the latter. And as for antivirals, I took them for two years and it didn’t do a thing. I keep telling myself — and everyone here — that EBV treatment is a marathon, and the nifty running shoes that work for one person will give blisters and bunions to another. There is no one size fits all for treatment, unfortunately. It just requires experimentation, and tweaks based on symptoms, and retesting a couple of times a year, in my opinion.
Good luck, both to you and your daughter! I wish you better health in the days ahead. xo
Sue says
Hi Lindsey! Just read your post and I recently had EBV labs done that came back positive. As you said in your post, Medical Dr telling me that it is a past infection due to IGM negative but all others positive. I went through a whole slue of health issues including thyroid cancer from 2014-2017. As I am starting to feel better I get this positive result. You mention very elevated numbers, what is very elevated mean? I am super worried about HL as my body has already had cancer in it and “can” be susceptible to other cancers. What treatments have you done that you are now feeling better. Are you still just seeing the infectious Dr or any other practioners? Thank you so much for posting! Sue
Paul says
Having contracted a very severe mono episode 8 years ago (age 24) that kept me confined to a room for 3 months (with severe mental fog for 3 more), I have been experiencing several similar symptoms again over the past 5 months.
I have since begun researching EBV reactivation and have been trying to uncover more information about it before landing here. The results of a recent blood panel I had done are below:
EBV VIRAL CAPSID AG (VCA) AB (IGM) 600.00
With the top one being negative, I am under the impression that no active EBV was detected. According to Google, the 2nd and 3rd tests seem to indicate that I had EBV in the past (not really sure how that test helps anyone if that is the case)
Am I missing something? Can you kindly help me interpret these numbers?
Many thanks,
Paul
Laura Zera says
Hi Paul,
As we discovered from the follow-on email you sent to me, all of your test results didn’t post in your comment for some reason. I re-read what you emailed me, and the test names don’t seem to match what I’ve seen before, either. However I’ll just tell you that it’s the Early Antigen test that I’ve been told is the most important of the four. That’s the one that indicates an active virus. And my suggestion to you is to seek out someone who knows EBV really well. Someone who has studied the treatments, etc. I don’t have much faith in the standard PCP or MD. They’ll likely not give it the attention that it’s due. Good luck, and if you want to try again to post the rest of your results, go for it.
Hope you find some answers and info soon so that your symptoms don’t worsen.
Christine says
Good Evening Everyone,
I was just diagnosed with reactivated EBV. My counts are:
EBV Capsid Ag IgG Ab >600 U/ml range 0.0 – 17.9
EBV Capsid Ag IgM Ab 47.9 U/ml range 0.0 – 35.9
EBV Early 57.7 U/ml range 0.0 – 8.9
EBV Nuclear Ag IgG Signal Strength >600 U/ml range 0.0 – 17.9
Extreme fatigue, sore throat, aches, etc. My primary told me that it just needs to run its course. I’m an IT Director and trying to work full time. Having a really hard time. Started taking immune support vitamins. They don’t seem to be helping. I suppose I just needed to reach out.
Thanks for listenin
Laura Zera says
Hey Christine, sorry you’re in the club. 🙁 And to be honest, I don’t think your primary knows enough about EBV if they said “let it run its course.” Immune support supplements are a good place to start, but I’m not convinced that they’ll knock it out. According to my ND, the number to be most “aware” about is the early antigen, as it shows that you’ve got an active virus. The other numbers can apparently stay high for a long time, and sometimes never go down, even when the virus is gone. So for you, when you get retested, pay attention to this one:
EBV Early 57.7 U/ml range 0.0 – 8.9
Hard to do all the things we need/want to do when the fatigue is at its worst. Good luck, and hope your energy returns soon.
Elizabeth R. says
Christine, I am also an IT Director. Must be a trend… Stress?? Ha Ha.
I really appreciate this site. I’ve been trying to figure out why I am so exhausted and light-headed for the past 5 months. I came on rather suddenly, although I think I’ve been run down (but functional) for a while. Even wound up in the ER because I thought I was going to pass out. I believed that it had to be cardiac-related, but got a clean bill of health in that dept.
Only indication of anything abnormal so far was my EBV results:
EBV VCA IgM <36.0 U/mL (range 0.0 – 35.9 U/mL)
EBV Early Antigen Ab, IgG 600.0 U/mL (range 0.0 – 17.9 U/mL)
EBV Nuclear Ag Ab >600.0 U/mL (range 0.0 – 17.9 U/mL)
I also have had my share of recurring/persistent Bronchitis, sinus/ear infections, and cellulitis in the last 5 years. They tested my other immunoglobulin levels last year. Curiously, my IgE was almost non-existent. Has anyone else had any strange immunology results outside of the EBV titers?
The cardiologist I saw today (2nd opinion) suggested I see an infectious disease doctor. I’m just afraid they will think I’m not worth their time. I’m just looking for answers and every doctor seems to compartmentalize patients into their specialty area. However, my PCP recommended putting me on Adderall for CFS, so I figured I’d better make sure my ticker can take it.
Also treating hypothyroidism (T3/T4), restless leg syndrome (Requip), reflux( Pepcid), and rapid heart rate (Toporol). I realize, I sound like a major hypochondriac, but other than this post, I try to keep my health issues to myself.
Any thoughts on next steps and finding the right kind of physician? Infectious Disease or Immunologist?
Thanks!
Elizabeth
Laura Zera says
Hi Elizabeth, I held off on replying to you for a few days because I had a doctor’s appointment on Thurs. and wanted to see if I’d have anything new and interesting to add. Basically, I don’t, because we’re going to work on a new treatment strategy next month. But I did want to add this: I have given up on having an MD as my PCP and now see an ND as my PCP. The difference in the type of care I’m receiving is vast. She is in this with me for the long haul, because EBV takes a long time to treat. And she’s very good at recommending things that are not chemical to treat my symptoms — I say this because Adderall for CFS seems quite severe to me, and also somewhat typical of an MD’s approach. I’m using things for adrenal support (like Ayu-Phos and Cortisol Manager) and paying close attention to supplements like B vitamins, taking lots of C, etc. So while I wouldn’t say don’t go to your MD or to an infectious disease doctor, I would throw in that you could do well if you found an ND who is knowledgeable about EBV. I took in a bunch of information that I collected from other people’s comments on this post, and my ND had a knowledgeable response to every one of them. That makes me feel good, and hopeful, and less like this virus is running me.
I also wanted to say that EBV likes to hang out in the gut and in the sinuses, so I’m not surprised to hear you’ve had sinus infections. That’s my weak spot, too. While my gut is iron, my sinuses are susceptible.
Thanks for sharing your experience and good luck in finding a professional resource who can help you map out a plan. I do intend to update the blog post above with more information and with my adjusted treatment plan, as well as my re-test results… as soon as I get myself over to a lab.
Tracey says
Good morning! I am so happy to find this blog. Yesterday I got the results of some bloodwork from my OB/Gyno office – and I find myself both happy to have a diagnosis yet daunted at the task of trying to get it under control. I too have suffered from sinus and ear infections a lot over the past 2 years. This past summer, my fatigue, hot flashes, and overall crappy feeling became overwhelming. My endocrinologist was of no help and didn’t want to delve any further. Luckily, the Nurse Practitioner at my OB/Gyn was. At first a lot of the symptoms were attributed to menopause, which I have been in for over 2 years. But my persistence and her willingness to keep checking things paid off. The level of fatigue has been overwhelming, along with some swollen glands in my armpits. My bloodwork shows a reactivated EBV – iGg >600. (I don’t ever remember having Mono as a teen, perhaps I did in a mild form and it was never diagnosed) She has prescribed rest and lots of fluids of course, but she’s also asked me to start taking the following supplements which I am starting today:
Alpha Lipoic Acid
Selenium
B-Complex
Ester-C
CoQ10
Vitamin D – my levels are within normal but on the low side
Have you tried any of these, or others that I should look into? I’ll report back in a week with how I am feeling after trying these.
Thank you!
Tracey
Ali says
Just a note…it may take upwards of a year for any vitamin/supplement to really show improvement on your immunity system. Keep it up!
Laura Zera says
Hi Tracey, welcome to the club! It’s a club where I think we all want to be in our pajamas every night by 8 pm. Or maybe just not get out of our pajamas.
So glad you had a persistent NP and that you advocated for yourself until you got answers. And finally someone else (besides me) who was never diagnosed with Mono. I feel the same way — maybe I had it, maybe I didn’t.
Supplements: Definitely anything you can do for immune support is needed. I’m up to 10,000 mg of Vitamin C a day and still adding. My doctor told me to take as much as I can tolerate without getting soft stool. She said if you take a ton of it and your stool is still firm, it means your body needs it and is using it. All of those other things you listed are great in general — and are things we’re quite often short/low on anyway — but I’d also look for supplements that are natural antivirals, like oil of oregano, garlic, lysine, etc. And I second what Ali said, it can take a LONG time before you turn the corner. There’s no quick fix for EBV, so hang in there. Hopefully in another year or so we’ll all have so much energy we’ll be vacuuming twice a day.
Michele says
My blood work recently indicated positive reactivation of EVB. My naturopath told me my numbers were 4x the normal range for all the various tests. My only symptoms have been: mild fatigue, hand tingling/numbness, and some muscle soreness (which I thought was related to working out). I’m concerned if left untreated that my symptoms could get worse and/or morph into something more serious. Is this a genuine concern?
My naturopath recommended 2 alternative treatments: (1) UVLrx treatments plus a vitamin/mineral drip (15 over 3-4 weeks); OR (2) an anti-viral supplement protocol over a period of 8-12 weeks (alternating raw garlic, licorice, olive leaf extract, oregano oil, echinacae, elderberry syrup, and lysine). Any thought on the most effective course of treatment?
Laura Zera says
Hi Michele, I think you’re right about not leaving it untreated, but whether your symptoms would get worse and morph into something else is one of those things that can’t be answered definitively. But is the risk there? Yes.
As for treatment, I wonder why your ND split those approaches into two streams, e.g., why not do it all? As for what’s most effective, what my ND tells me is that people respond differently. There doesn’t seem to be a “one sure way” to knock down EBV. Nor does there seem to be a quick fix. So I guess it’s a matter of trying something, retesting, and then course correcting if the treatment hasn’t worked. And I will add that I keep hearing that it can take a while to knock it down, so if you do try one or both of these treatments, which seem to be moderately short courses compared to some others I’ve heard about and/or tried myself, I’d love it if you could follow up with your results.
Good luck to you!
Diana says
Hi Laura,
Hope you are starting to feel better and that EBV is finally kicked out from your immune system.
My name is Diana and I live in the United Kingdom. I have had a few painful encounters with EBV in my life time. Four years ago I kept getting ill every week with throat infections (I had my tonsills removed in 2011) sinus problems, memory fog, swollen fingers and abdominal pain. My doctor believed my symptoms were viral and sent me home to get better with no medication or explanations why I kept getting sick. I was so desperate to find a solution to my health issues that I decided to pay privately to have all sorts of tests done. The hospital where I was treated was great at finding the causes of my symptoms. I was found to have a parasite, a yeast infection and an on going viral infection with EBV and other herpes viruses. I was given supplements and dietary advice and my symptoms improved greatly in the last 4 years. In fact, I did not need to go to my local doctors in 4 years until recently when I felt a flare up of my EBV symptoms again.
I decided to visit the same hospital again and they found that I had an on going viral ebv infection, although not as bad as the one I had 4 years ago. I have been prescribed an antiviral called Aciclovir as well as a range of supplements to support the inmune system. I am currently taking Gene Eden, Coriolus, Lysine, olive leaf extract and high doses of vitami C.
The doctor who treated me was very good at giving me advice on how to treat chronic ebv infections. As well as taking the above medication and supplements, I have been told to avoid fish while I am getting treatment because of mercury. Diet is very important when dealing with ebv. Eating plenty of foods high in lysine content as well as plenty of greens and avoiding processed sugary foods is a key to fighting ebv. Avoiding caffeine as well as chocolates and nuts because of their high arginine content is also important. I have researched this virus in the last few years and good nutritious food helps recover from ebv.
I just wanted to share my experience in dealing with ebv and pass on information about supplements and medication that can help fight the symptoms of ebv.
Hope you get better and recover promptly from ebv.
Diana
Linda Rampey says
Diana thank- you for writing in depth about your recovery.
Laura Zera says
Hi Diana, thanks so much for sharing your knowledge and treatment protocol, and I hope this recent flare up recedes quickly.
You broke my heart a little with the mention of coffee and chocolate and arginine. I hadn’t known that arginine was like a “food host” for the virus, but now I’ve done a bit of reading, and so now I will make some diet choices to reduce certain things (I currently eat sunflower seeds every morning). And while I doubt I can eliminate coffee and chocolate altogether, I will cut back.
For others who are interested in the lycine to arginine ratio, I found this list to be very comprehensive (with the better-for-your-virus foods nearer to the top of the list): https://hsvblog.org/herpes-blog/diet-lifestyle-tips/chart-of-lysine-vs-arginine-in-common-foods/
May I ask what dosage level of Vitamin C you’re taking?
Aciclovir looks to be in the same family as Valycylovir, which I took for two years. I’ve never heard of Gene Eden before, but I found a clinical study that showed it was more effective than the anti-viral meds more often than not: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5010074/
Thanks again, and hope you’re feeling better again soon.
Linda Rampey says
Hi, I was wondering if your Naturopath would recommend a colleague in the Houston or Texas area?
My story is the same as everyone else’s only a little farther along than all but you. I can’t go over it right now, as I’m really just at the end of my rope.
I’ve never really believed that Naturopath ‘s were worth much, but if you like them then I’ll give them another shot. Thanks, and good luck to you all, Linda
Laura Zera says
Hi Linda, sorry to hear you’ve hit the wall with your recovery, and we’re here to support you as you continue to seek knowledge and treatments that will return you to health.
I don’t know if my ND would recommend an ND in Houston/Texas area, but I see her on Thurs. so I will ask. She does attend educational summits and conferences quite regularly, so she could well know someone in your area. I’ll get back to you on that.
Pamela says
This post was really helpful.
I am very symptomatic: no energy, sore lymph nodes, widespread pain, sore throat for over a year or more.
Most Dr’s dismiss me and think I am crazy.
My labs from this past Friday are:
EBV VCA IgM <36.0 U/mL
EBV Early Antigen Ab, IgG <9.0 U/mL
EBV VCA IgG 589.0 U/mL
EBV Nuclear Antigen Ab, IgG 433.0 U/mL
I don't know if my Dr will see a reactivation in this or not. It has been so very frustrating
Laura Zera says
Hi Pamela, if I correctly remember what my ND said, if your second number is within range, but your last number is high, it means that you’ve had a reactivation, but your body is not currently producing new antigens (to continue to feed the reactivation). And I do know she’s said the last number can take a long while to return to normal range (years), and sometimes never does, which is why it’s the second number that is most key. That said, if you are symptomatic, your doctor should be continuing to explore cause and treatment. I wonder if there’s something else that is also contributing to these symptoms. Find a doctor who is not dismissive (that makes me so angry) and who will work with you on returning to your best health. Good luck! We’re here if you have any questions or just need to vent. xo
Alicia says
EVERYONE SHOULD BUY THE BOOK “MEDICAL MEDIUM: THYROID HEALING” by Anthony William. It basically traces immune disorders to the EBV virus and gives key foods for healing the virus. Good info and I think it just came out. Also recipes. Be well!
Tessa says
Hi Pamela, which lymph nodes are swollen for you? Mine are under my chin. My submandibular lymph nodes. Did they see those lab tests as reactivation? If so how did they treat you. I also positive for Nuclear antigen Ig G and Early antigen IgG. So hard to get answers.
Diana says
Hi Laura,
I am taking 10.5 grammes of vitamin C a day. Eden Gene seems to be effective when treating ebv. I forgot to mention that I have also been prescribed Transfer Factor and Green Tea extract. I love coffee and I have had to stop taking it. I have lemon and ginger herbal teas instead. Ginger is anti inflammatory and lemon has properties to fight viruses and bacterial infections.
It is worth getting comprehensive parasitology and organic acid urine tests also. I had yeast infection and chronic sinus infections and thanks to these tests the doctor was able to treat parasites and helicobacter pylori. It seems that people with ebv also have these types of infections in their guts.
Laura Zera says
Oh hey, I know Transfer Factor! I think we still have some in our cupboard. My husband took it when he had Lyme disease (which is how we also found out I had EBV — his, and now my, ND tested me for Lyme and found signs of EBV, so then tested me for that).
I was curious about your Vitamin C dose as I’m still building my dose and my body is not unhappy about it, which my ND says means it needs it. I’m up to 14 grams a day, spread over 4 doses.
You’re not the first person who has mentioned the candida element. And I guess one doesn’t have to have gut symptoms to have something going on there.
Thanks again for your information, Diana.
Linda Rampey says
Hi everyone,
Thank you all for the great information. I want to thank Amazon, too , for Kindle where I’ll be for a while today, downloading books. Aww, too bad! I have to get some more books ! I love books. And now I can have all I want and they don’t push us out of our home.
I too have had a problem with Candida for decades. And constipation. Now I’m on such serious doses of morphine, combined with the diuretic, Lasix, I landed in the hospital this last weekend with a small blockage in my intestine. I thought it was going to kill me, however small it was. Just like the kidney stone I had some years ago. Only much, much worse.
I’m still resting, but not for too long, as sedentariness is not good.
For now, it’s time to hit the books. On my shelf is “All is Well” by Louise Hay & Mona Lisa Shulz. I also have Esther Hicks on YouTube. If you don’t know her, but you are more a spiritual person as opposed to religious, you might want to get her first book, which will list a couple other authors. For those of you who do know her, the stuff I ve been listening to lately have been short-ish talks on how to get into the “Vortex “, even when everything looks/feels bad. While I was awaiting the ambulance, I asked for help in this area – I couldn’t do it on my own – and soon I heard a little voice saying, “ think of The Christmas Tree! Oh yes! Of course, I thought. This image is one Mother thought up for me when I was still quite a baby. My lifelong struggle with the most God-awful nightmares had begun, and shed found me shrieking and crying in bed. We talked for a while, and ended it with the suggestion I think of a Christmas tree, and decorate it however I wanted. It has worked like a charm, even these decades later. Now when I need it, it pops up toward me as though in a pop-up book – a little, flat, cardboard/bookpaper tree that is decorated beautifully. This is my emergency tree. Otherwise I can mentally flip through beautiful images of trees I’ve seen in photos around the world, and choose one of them.
Anyway, thinking of the tree really did work to get my mind into the stream of better thoughts. That’s how I’m getting through these days, too.
Linda
Laura Zera says
Linda, I love your post so much! How amazing that you have the Christmas tree image and that it’s so powerful for you. I’m quite familiar with Abraham Hicks and fully behind the concept of us having power to change our energy frequencies. Since you’re in the mood for books, I’ll recommend one that I’ve used for a couple of surgeries with great success: Prepare for Surgery, Heal Faster (book and mp3) by Peggy Huddleston. It’s mind-body work, and I won’t go into all the details right now, but suffice it to say that I had major surgery in 2006 and I practically enjoyed it. My eight-week recovery took 10 days. It was amazing.
Happy reading to you!
Marjorie Berry says
Hi Laura,
I am wondering if your EBV levels have come down with the treatments you are using. Mine are so high right now they are off the chart. I am trying many of the approaches you are in treating the disease. Thanks for all you do.
Marjorie
Laura Zera says
Hi Marjorie, in the two years I’ve been treating it, my numbers haven’t come down at all. Sad, but true. That said, I also had a sinus surgery in there, plus a deviated septum/nasal valve repair surgery, plus a couple of sinus infections. All of which wreaked further havoc with my immune system.
I’m still seeking new/different treatments. My latest is to add high doses of lysine and limit arginine-rich foods.
Good luck! Keep us posted if you stumble onto new information or a treatment that works for you. All best.
Marian Muse says
I have been feeling quite lousy for the last 6 months, fatigued, achy, rapid weight gain, foggy, and just not myself. After insisting on several blood tests last week, one being test for EBV (which I got 3 years ago, along with Lyme) I just got my EBV results back. The comment says “this inidicates that you have had mono in the past or you have a reactivation of infection. My numbers are as follows:
EBV AB VCA, IGM <36
EBV Early Antigen AB, IGG 125.0
EBV AB VCA, IGG 378.0
EBV Nuclear Antigen AB, IGG 351.0
These numbers are ALL well above the ref. range. I don't have the labs from 2014 when I was told I had EBV and Lyme, but regardless, I am a bit concerned with these numbers. How do I know if this is reactivation or old. Who can tell me what these mean. My NP doesn't seem to think its reactivation, but I am not confident she is well versed in this virus. I feel just like I did in 2014, minus the fevers. Something is going on in my body, and despite being proactive, all other blood tests are normal. I have gained 10 pounds in 8 months, despite a clean , gluten free healthy diet. I am ready to flip out. I don't feel good and I know my body. Any suggestions on who can help with these numbers for the EBV, as I am sure this is probably a root of my issues. Thank you.
Laura Zera says
Hi Marian,
From everything I’ve heard, read or been told, it’s the second number that is the most important with regards to indicating whether you have a reactivated case. So, from your results, this one: EBV Early Antigen AB, IGG 125.0. That is the number that indicates your body is currently making antibodies. That said, I would seek out a consult with a new NP to confirm this, especially if your current NP isn’t well versed in translating these results. And like you said, you know your body, so continue to be your own best advocate.
Have you fully recovered from Lyme?
Danielle says
I wish doctors would talk about this more. Everyone I have talked to in the medical field have said that it’s not possible to get it twice, but my ebv panels prove otherwise. I’ve been having relapses since 2008 and the last two times I relapsed I got extremely rare ebv related Acute acalculous cholecystitis that almost cost me my life and I’m still fighting for my life right now, but because doctors do not see it as possible doctors aren’t familiarizing themselves with cases like ours and therefore have no idea what to do with it or how to approach it. When I became jaundiced, feverish, had cyclical vomiting and had positive murphys sign in February I was immediately scared my ebv had relapsed. I was put in the hospital. They ran a test, I tested positive on the monospot and my entire ebv panel was all high. I had to have my gallbladder taken out. It’s been 11 months since I had that test and even though I had my gallbladder out my liver enzymes are still high so they retested me to see if I was still positive. My numbers are all high still except my igm had become equivocal now. I know ebv related AAC has only been documented in 16 patients worldwide, but I’m sure it’s happened to more than that if it happened to me too. Ebv has become a virus I fear so much in my life because when it comes back it always comes with a vengeance. If anyone has any suggestions for me on how to beat this I’m all ears. So far nothing I’ve tried has worked.
Laura Zera says
Danielle, so sorry to hear it’s come back, and thank you for sharing (and Diana, too). Since Diana originally posted her treatment regime, I’ve been adopting some similar things — lots of Vitamin C (15,000 mg/day), 1500 mg of lysine a day, other herbal virus fighters (I’m taking one called “Viressence”), cutting arginine-rich foods, especially nuts, which I used to live on, and taking extra good care of my body in regards to helping it with what it might be missing, and/or what I know is missing given the results from my gene testing and the fact that I have a mutation and don’t process (methylate) B vitamins, especially folate (so am taking Vitamin B, mineral supplements, 5-MTHF, etc.).
Good luck and hang in there — like Diana, I’ve been told this takes a long time to recover from.
Diana says
Hi Danielle,
I am so sorry you are battling ebv. This virus can take over your life if you end up with medical practitioners who don’t know much about it and who still think this virus can’t reactivate. It took me several years and numerous visits to different specialists and family doctors to find out what was happening to me. Have you been given antiviral treatment for it? I’m currently following a 3 month treatment protocol which consists of aciclovir and natural antivirals. My doctor prescribed Gene_Eden vir as well as lysine, 10 grammes of Ester C a day, olive leaf extract, transfer factor and Corioulus versicolor. I am also taking vitamic D3 and vitamin B6 along with garlic and ginger. All of this as a result of all the tests I have had done. I would recommend having organic acid tests and parasitology 3x tests done as this will give your doctor a better idea of what nutrients your body is lacking and what yeasts, parasites and bacteria are in your digestive system. People with the ebv virus often present these type of ailments which make it more difficult to get rid of the virus. My doctor advised me to take things easy and to try and reduce my stress levels as well to eat a very healthy diet free from additives, preservatives, basically eat lots of fresh fruits and vegetables as well good protein. I am avoiding sugar altogether as well as foods high in arginine. I have also been told to avoid fish for a while.
It takes a while to get this virus to stay dormant in your body. I hope this information helps. Do not despair, it is possible to get this virus inactive again. I hope you get better.
Blessings,
Diana
Linda says
Thank-you for this. I’ll show it to my spouse to see what we can add to our list. Thank-you again!
Linda
Ashley Ragan says
I just read the article about the reactive EBV. I went to the Dr last week for pelvic and hip pain. And I had my 4th positive mono test since I was 12. 3 now in the last 2 years, the previous (most recent positive was Nov of 2016) and I have never really felt my ‘get up and go’ fully recover, that is really when the pain in my hip and very lower back/pelvic region began. It has only gotten worse since then. I’m not able to stay asleep, walking is so hard, and forget keeping up with my kids. I have ADHD so for me to be this tired, and slowed down so much from pain, is agonizing. The Dr. Called and said my inflammation counts are up and rescheduled me for 3 business days from now. The internet can offer scary stories plenty, of possibilities. What I want to know is, where should I go from here? What should I push the Dr to be testing for? My small town seems to lean more toward the ‘Its all in your head, here’s an antibiotic, take 2 asprin’ approach. I really dont want to drag this out longer than necessary. I wanna start figuring out why I’ve been positive for “mono” 4x. Your story spoke to me. Please help!
Linda says
I’m very sorry to hear you’ve joined our collective party. Not that I’m happy about being here either…
About throwing the book at CEBV, Lyme’s, et al, (because it seems that one herpes virus prefers there to be two herpes virus’ – although how it attracts ticks is a mystery to me. I’m thinking that a lot more folks have these two virus’ than is known, and that Lyme’s reactivates CEBV, while one if not both “set off” the Lyme’s’ symptoms. Just my opinion, and not one I’ve thought a lot about.
In my own case, my first Dr saw the high (read: off the charts) EBV numbers for many years without doing anything about it. Nothing. Barely even saying anything about it. Then one day I was flat on my face out in one of the pastures. Thank goodness my spouse just happened to be looking for me and she saw me go down. I got up fast enough (the thought of fire ants will get the dead up and running), and that started a decade of looking for the needles in the stack.
Fast forward (or limp, crawl, and roll in a wheelchair) through several drs. – some were mildly un-injurious, others were downright “ “baddies” – or as we say down here, “bad-‘ns” (bad-ones if translation is needed). We spent over a year with one of the bad-‘ns who was disguised as a super-caring good-‘n. Turns out he believed I was a drug addict (really?not another one, Geeze). We’ve finally found one who’s been caring for me for about 3 yrs now. With Morphine. It’s hard to find a dr willing to say her patient needs pain medicine of the opiate kind, and not just a little, either. Thank God for her. I won’t publish her name, as she’s an outspoken supporter of caring for patients the way they need it, not the way a company or gov. think they should be. If you want her name, ask here and I’ll do my best to respond in a timely manner. I’m out of bed now more often than I was in, but this letter here is the extent of my clear thinking for the day, and it sometimes is the amount I can do for several days.
I’ve done the antibiotics, but not a lot more. I’ve done some anti-virals, but they didn’t sit well. The morphine is for my stomach – at least I call it my stomach – it’s really in my abdomin/thorax. While it’s possible to be in the abdominal cavity, once someone says the word “stomach” or “stomach area”, that’s all you need for anything else to be forgotten whilst the focus is thrown into the stomach, sure that that’s the only thing which can have something wrong. Never mind that I had major surgery in the cavity at 25, and that there was no guarantee I wouldn’t have to have another. Nothing to do with my stomach.
Anyway, I’m now taking Colloidal Silver, as it’s the only thing proven to kill herpes virus. EBV? Lyme’s? We’ll see. I’m sick of taking drugs and am truly over the Morphine, even though I still require it. I listen to Louise Hay and Abraham, take therapeutic doses of vitamin c (1000-2000 iu’s/day with some time off here and there. And other vitamins as well. And prayer. And a healer – Clardy Megulan (has a book on Amazon).
I don’t feel like “that’s all the have left”, rather, I ought to have listened to myself years ago about these particular health choices.
I’ve already spent years working to get better all the while getting worse – very, very much worse. Now I’m going to spend whatever time I need to working out a lifelong protocol of health.
I hope I was clear in my thoughts here, and expressed myself without offending. I’ve changed a lot since the deep pain and morphine, and unfortunately can’t keep a straight thought, really, for this long. Please excuse me if I did.
Linda
Laura Zera says
Linda, I’d never heard that about Colloidal Silver (which I took a few years ago for my chronic sinus issues, but didn’t really feel it helped).
Keep on keepin’ on. You’re on a good path. You believe in your right to be healthy. I am sure things are going to improve for you. xo
Laura Zera says
Hi Ashley, I’m so glad you’re here! Like Linda said, it’s not really a party we want to be at, but the alternative of being alone is worse.
So your issue seems to be repeated reactivations. It means your body has been a happy host for it. But I also wonder if maybe it never really went completely dormant. But if we’re following the line of questioning around why EBV likes to hang around, I’ll refer back to what one of the other visitors here, Diana, said about arginine-rich foods: apparently they “improve conditions” for EBV to live on in your system (Googling about what foods these are is easy — there’s lots of info out there). And if diet modifications are difficult, then taking lysine supplements can at least balance the arginine, and adding lots of Vitamin C doesn’t hurt, either. As for further testing, I’ve also heard a few people say that testing for candida is good, because EBV and elevated candida often go together. But I think you’re off to a good start by doing research. I’ve been fighting this sucker for two years now, and I’m really learning a lot as I go, and trying new things — and I hesitate to say it, but I do feel like maybe I’ve turned a corner on my current protocol. The thing is: one protocol doesn’t work for everyone, because we’re all different, so it does take some trial and error.
Good luck, and hit us up if you have any questions!
Terry Chester says
greetings, I have been reading the info here, a little background, for the past 16.5 years i have lived with short bowel syndrome after an er doctor screwed up. I only have 20% of the small intestine and less than 50% of the colon, I live in constant pain from complications due the surgeries had 3 open abdominal surgeries for resections in 6 weeks.
Was just diagnosed with Reactivated Mono, i am waiting for my doctor to send me the lab results and will go in to see them the week after Christmas, I can see I am in for more of what i have lived with for 16 years. FUN FUN *not* o boy.
I will keep you in my prayers,
Laura Zera says
Ack, so sorry, Terry, that does not sound fun at all. I’ll reiterate the same thing I’ve said to others: if your doctor isn’t well versed in treating reactivated EBV, seek one out who is. And hang in there, as it could take a a while to get EBV back under control. I wish “increasingly diminished symptoms” for you — in other words, feel better soon!
Sarah says
Hi Laura – I came across your page after lots of googling on EBV. It was great to see someone post their lab work as I’m always trying to figure out what is really high. My long story short is diagnosed with Lyme in May 2016 and after a yr of antibiotics improved about 15% and started seeing a Function Medicine Dr. who tested me for EBV and candida, which I was positive for. My EBV early antigen in 16.9 and candida albicans igm is 2.0 (in range is under 1.0). We started treating with herbs (cat’s claw) and various vitamins and then added in Valtrex (which made me dizzy at full dosage – so brought it back down to half of the prescribed amount). I also take Low Dose Naltrexone which is a drug that helps the immune system regulate. 6 months after starting that protocol I feel generally better but still have a lot of body pain and an annoying clogged ear. My EBV and candida numbers have not gone down (slight increase actually). However, my general IGM levels come down from 480 to 398. Feeling frustrated as I’m hoping to get pregnant and start a family soon but wanted to get this under better control before that happens. However, I’m nervous it may not happen for years and I’m 34. Have you gotten your EBV numbers down?
Laura Zera says
Oh Sarah, you’ve got the triple whammy. So it sounds like you’ve been treating the EBV and candida since about May 2017, and given that you’ve got so much going on, I’m not really surprised your numbers went up a bit (similar to how my numbers went up after I had sinus surgery). Your body is dealing with a lot, and it may need to vanquish one illness/imbalance before it can fight off the others. For example, when my husband was treated for Lyme, he had two co-infections (carried by the deer tick) as well, and his doctor focused on one at a time, basically, and it took 2.5 years to eradicate them all.
As for me, my numbers have not gone down (last test was quite recent). I’m trying new things, based a lot on inputs from other readers here, e.g., lots of lysine. But I will add this: the whole reason we found my EBV was that I was tested for Lyme because Lyme is transmittable through body fluids — which means you can also give it to a baby. In fact, I know someone who did (husband gave it to wife, wife gave it to son). So as far as the timing for starting a family goes, this is something important to consider.
Re: clogged ear — I have been dealing with that on and off since 2000 (it started as barotrauma for me from flying so much). What helps me now is Stinging Nettle Root capsules! They’re inexpensive and they help my Eustachian tube and my husband’s tinnitus!
Good luck with treatments, let us know how it goes.
Brennan says
So this is my life now, apparently. I also have reactivated EBV based on my sky-high igG numbers. I am 30 and I have never had mono in my life, or so I thought… My naturopath had a hunch I might have chronic EBV based on my neutropenia (neutrophils looked like a chemo patient) and my sudden jump in cholesterol and inflammatory markers, along with my low thyroid that we have already been treating with NDT. Sure enough the results show I have it and it is reactivated. I have never actually been diagnosed as having mono before in my life, although apparently it is often misdiagnosed as the flu so it’s possible that happened to me.
This statement from Laura completely and totally resonates with me: “Prior to this diagnosis, I wasn’t complaining of anything seriously wrong with me, but I wasn’t jumping up and down with boundless energy, either. My common refrain was, “I feel like for someone of my age and fitness level, I should have more energy.”
That’s exactly it. I feel like I don’t have much energy. I don’t sleep very well, and even when I get 10 hours I wake up feeling not very energetic. I rely too much on coffee to keep me going through the work day. Even after a cup of coffee I don’t feel particularly energized, I just feel like I wish I had more energy. But I don’t feel incapacitated or anything like that. I’m still able to work out, although my progression on the big lifts (deadlift, squat, etc.) is slow going compared to normal men.
In addition to the EBV I have Type 1 Diabetes and I eat a modified ketogenic diet to keep my a1c at nondiabetic levels. Before this EBV diagnosis I already ate extremely high nutrient-density foods and ate zero sugar, zero gluten, zero dairy, zero fructose, etc. Maybe my diet and my consistent exercise was keeping me in a functional state during the EBV reactivation, I don’t know.
My naturopath has prescribed me a monolaurin complex that also contains humic acid and olive leaf extract, along with cat’s claw ,and activated charcoal for any die-off symptoms. The goal is to destroy the lipid layer around the virus so my immune system can fight the virus. I’m also taking ashwaganda for the extra immune support. Prior to diagnose I was already taking high dose D3, a multi, CoQ10, gluathione, l-methyl folate, etc. so I am continuing on those. I don’t take vitamin C because on a ketogenic diet that can cause copper deficiency, which in fact I have had happen to me before.
I’m not really sure where I go from here, I just want to get this under control as fast as possible in order to minimize my future risk of cancer, etc.
Laura Zera says
Hi Brennan, sorry for the delayed reply — holidays and all that good stuff, during which, I was eating a decidedly non-helpful-to-anything diet.
From reading your post, it sounds like you’re doing everything right, as is your naturopath. While I’m not taking all of the things you listed at the moment, I’ve taken most of them at one time or another over the past two years, so it seems my ND is in sync with yours as to what types of things to throw at EBV.
One thing I wanted to ask: with your ketogenic diet, do you eat a lot of nuts and seeds? I’m not sure if you read some earlier comments, but we’ve discovered in these posts that nuts and seeds are arginine rich, which is a supportive host to EBV. Taking a lysine supplement helps to balance out the arginine.
If these supplements don’t work for you over time (and I’d say you need to give it at least six months, if not more, to get a good gauge), then earlier in the comments there is some discussion about a blood treatment, something I’m considering for the future if my numbers stay high. Also wanted to mention that I have a 29-year-old family member who has EBV, and he reports the same fatigue as you (and me, except I find it more surprising/unusual to hear of fatigue in people 30 and under).
Good luck! Happy New Year! I hope 2018 sees you regain a handle on this virus.
Brennan says
On a strict ketogenic diet with total carbs <30g it is difficult to eat nuts because the carb counts add up quickly. However something like macadamia nuts are useful because they contain lots of good fats and the smallest amount of carb, so I do have them from time to time. But it's not something where nuts are a staple of my diet, because they cause me to have elevated blood sugar 3-5 hours after eating them. In 2oz of macadamia nuts there is about 0.8g arginine, however I do eat higher protein than the average ketogenic diet so I will get more arginine from that. I'm not sure if it is the total amount or just the ratio that matters in the case of EBV, can you comment on that? I know amino acids compete with each other so it could be that the total amount doesn't really matter. In looking at my cronometer data, it seems I get about 7g arginine/day and 12g lysine/day (rough average).
Already with the monolaurin I have noticed die-off symptoms (slight stomach queasiness, slight headache, general 'off' feeling, etc.) that appear to go away within 30-60 minutes after I take activated charcoal. I think that's a good sign that the monolaurin is doing something but like you said it will be 6 months before I can really retest my numbers.
Laura Zera says
I love that you’re so on it!
For arginine/lysine ratio, I’ve read that if you can’t eliminate the arginine-rich foods from your diet, then taking a lysine supplement is adequate. So my interpretation is that ratio is most important, but I’d have to read more to feel confident about that.
I’d never considered how die-off symptoms might present, so thank you for bringing that up. I’m not getting any of those symptoms, so there’s another question for my ND.
Agnes says
Thank you, Laura, for this informative post. I know you wrote this a while ago, but your comments show how relevant it continues to be.
I had mono twenty-five years ago in college, but clearly it has been reactivated in me. I just got my EBV numbers back and was looking around for some answers, which brought me to your blog. My EBV numbers are very high.
EBV Ab VCA, IgM1 – neg
EBV Early Antigen Ab, IgG1 –150
EBV Ab VCA, IgG1 – 433
EBV Nuclear Antigen Ab, IgG – 492
Reading Lindsey’s post on the connection of this EXACT pattern to HL was terrifying, but I am glad I saw it. I plan to print it out and bring it to my doctor.
I clearly have a lot of research to do.
— Agnes
Laura Zera says
Hi Agnes, glad you found the post, although sorry for the circumstance that brought you here. I think we’ve got some great paths for exploration in these comments — I did some cut/paste into a word document and gave a series of them to my doctor to help direct my treatment.
Good luck, and let us know if you have any questions. All best for the new year.
Deliverance Bougie says
I will be eager to see when you have an update. I am here out of frustration and seeking answers.
I was diagnosed with Hashimoto’s 6 months ago. I have been doing strict AIP, but my 3 month labs showed higher antibodies. My NP tested for reactivated EBV which was positive. I am taking Lauricidin and Vitamin C. Most recent labs show labs only went down 1% (need to go down 99.8%). Needless to say, I am frustrated that all my hard work with AIP does not seem to be doing much. I do feel better most days, but some days I feel worse than I did before my diagnosis.
Your post is the first time I have seen tinnitus being related to anything. Mine has been getting worse. Some days it is almost unbearable. On the worst days I have an extreme sensitivity to sound. Even normal conversation can make it feel like my ear drums are vibrating, causing my head to feel intense pressure.
I hope you are able to find some resolution. Two years is a long time to go without seeing improvement.
Laura Zera says
Hello, Deliverance! So what you’re experiencing kind of supports what I’ve been thinking, which is that there’s no one tried-and-true way to knock down the EBV, and that if something isn’t moving the numbers in the right direction, then new things need to be tried. Because YES, for me, two years is a long time to go without improvement. But I also feel like there’s so much to learn about diet, absorption, supplement combos, etc. So, onward!
Re: tinnitus — not sure if you also saw the mention of it in the comments thread, but my husband suffers from it, and he finds basic, inexpensive Stinging Nettle Root capsules really help it.
Good luck to you on this journey. I will be doing a re-test in about 3-4 months, so will post the updates and add whatever new information I’ve learned along the way.
Jo says
I know this is a much older post, but I wanted to reach out. If you’re still struggling with your Hashi’s diagnosis, maybe try naltrexone and a sugar free, dairy free, gluten free diet? I hope that you’ve already figured things out but thought I’d offer that.
carrie lewman says
Hi Laura,
So thankful that you have shared your journey as there is not much info out there.
I was diagnosed with Hashimoto’s back in 2012 and have gone the natural route to get it under control. These past 5 months I could tell something wasn’t right because I have had a sinus infection for the past 6 months, swollen lymph nodes, swollen side of my face, horrible fatigue and hot flashes. I started a temporary job and have been under tremendous stress and thought maybe that was the cause of all my symptoms but also felt it was something deeper.
I am without insurance at the moment so I’ve had to figure all of this out on my own. I stumbled across the Medical Medium and began reading his books. Learned about EBV and thought, “wow, this all sounds familiar.” Ordered a test myself online, got my blood draw, got my results and all be damned if I don’t have EBV! My results are, Ab VCA IgM, Early Antigen- <9.0, Ab VCA 153, and Nuclear Antigen 28.2.
I have started on supplements but unfortunately my body is reacting negatively to all of them. I have also ordered a food allergy sensitivity test to see if the foods I’m eating are causing inflammation and upsetting my gut. Could be why I’m not able to take anything without side affects.
As with some of the others on here have mentioned, mornings are an absolute nightmare for me. I dread them so much. Unless someone has experienced it it is hard to explain.
Working to reduce my stress, keep a strong and positive mental attitude and rebuild/support my immune system.
Thank you again for sharing. I’m trying to do the same on my social media platforms because I think there are more of us navigating this than we realize. Plus, it’s nice to know we’re not alone in this battle.
Laura Zera says
Hey, Carrie, thanks for joining us here!
Okay, I know very little about Hashimoto’s, except that you’re not the first person commenting here who has had it *and* EBV. Hmmmm.
It sucks rocks that your body isn’t tolerating the supplements. Maybe something to help coat your stomach might help? I’m taking deglycyrrhizinated licorice chews to help my tummy. But also, I’m hopeful you can find something among the treatment options that will work for you.
It is good that we’re getting the word out, because it’s one of those illnesses that is largely ignored by the mainstream medical community — much like Lyme disease was/is, and know we’re finally understanding that Lyme is no joke. I feel the same about EBV, and that we need more information on it.
Good luck! Let us know how it goes.
Alicia says
I have chronic reactive EBV (another test you can take to see if you have the 3 markers of CHRONIC EBV) and my doctor put me on IV high dose vitamin treatments and after 4 weeks the swelling in my armpits went away. They had had nodules for about 2 years. Now I do the IV’s twice a month to maintain. She also includes a boost of metabolism meds to counteract the weight gain. I’m feeling much better.
William’s other book, Thyroid Healing, talks about EBV being the base virus for many autoimmune and thyroid disorders. Food plans are included.
I would add that initially i had severe food reactions and still have sensitivities but I’ve learned that they are worse when I’m in a reactive state. It can be managed. (I’ve been “sick” for about 7 years now).
Hang in there everyone. It’s a long road similar to Lymes in many ways. I’m hopeful!!!
Laura Zera says
Hi Alicia, wow, so glad to hear that your swelling went down! Yay, you found something that works for you!
I didn’t know Williams had other books — I just put Thyroid Healing on hold at my library, so thank you for mentioning it.
I think “hopeful” is a good place to hang out; the alternative is much worse. I’m hopeful, too.
Take care, stay well. xo
Natalie Carroccia says
Hi! Glad I found you guys. I had a bad case of mono in 7th grade. I layed in bed for a month. I kept getting strep too so they removed my toncils so a serious sore throat since happens rarely but I get a full thick sore throats sometimes and that is usually when EBV is creeping in. I had bouts of fatigue and other odd symptoms on and off in my 20s. I was tested for all kinds of diseases including MS and was told I “might” have RA since my blood work was showing indications of that. On to my 30s I had mono again after major stress and developed chronic lymphadenopathy which lead me to a check in with an oncologist. Infectious disease says there is “nothing” that treats this. My docs too were not in agreement with the results and said could be chronic or an old infection. Despite that
since my fatigue was getting debilitating I decided to start treating myself. I have been studying herbs and vitamins since I was 20. I discover an herb called Chapparl. This herb really helped me recover. You just have to research yourself because there have been some inferences that it can effect your liver in a negative way. Mixed research on that. Still when I take it I do not tax my liver in any way with known meds like Motrin or alcohol etc. I also take Milk Thistle with it. I was feeling really good for a while. My diet was improving and I was working out regularly. I find diet effect the inflammation in my body so I need to be mindful of that. Anyway I am now back in an active infection state. I am not sure what my numbers are but doc said it is active. I have a weird rash on my neck too that is driving me nuts. I still don’t know if active ebv=mono or are they not equal. I also want to know is intermittent ongoing reactivation of ebv the same as chronic? I am a little confused since it seems you can have reactivation and being assymptomatic. In persons with healthy immune systems the disease should not effect you much even if it reactivatea throughout your life? These are the questions I want to know. Ally other blood work is perfect. My RA seems nonexistent so I must be doing something right. The only flag in my blood is active EBV and some blood cells mildly off. Doc said not a concern about blood cells.
I am thinking about taking chapparly again but fully admit my diet has been poor and I have not be exercising. I have not been meditating. I really have allowed myself to regress so am sure that is why this disease is trying to play house again.
I have not had lymph nodes checked in a while and think mostly they are just shotty from swelling and shrinking so many times. The problem ones are in my neck. They started on right side and slowly progressed to both sides. They are not huge though so doctors said not a lymphoma unless an extremely slow growing one which is not treatable.
I have learned to not run with the idea I am sick. I am not sick. Everyday I tell myself that again. I believe in mind over matter and power of health to heal. I read about the human microbiome and future thought on treatment for the human body when off balance.
I am debating on asking for an EBV test and checking in with infectious or immune doc. Honestly don’t know what step I will take next. I might just go raw and juice a lot. That seems to blast my body with goodness.
If anyone has any thoughts on my above questions please share. I am wondering if having ongoing EBV is more normal then not but most people would not know because they don’t get the test or have zero to minimal symptoms….does that still mean our body can get sicker though? I am confused on what CAEBV is. Are there periods of remission? It sounds like chronic is serious and fatal so mine seems more intermittent and health related due to lifestyle.
One thing is for sure, not going to worry about it. Hope you are having a blessed day ❤️
Linda says
Hi all, Since my memory is still MIA most of the time, I can’t remember if I told this group about Clardy Malugen, an energy healer from FLORIDA. I’ve had two sessions with her via computer, one within a week of the other. I had Lyme’s & EBV, and zero life for more than five years (mostly bedridden). On morphine for three of those years, 24/7. My life was in and out of bed for 5-7 yrs before that, with whatever painkillers the doctors thought I actually needed (vs what I told them I needed). The pain (I refuse to call any of this “mine” eg: my pain, my EBV, etc. I don’t know who’s it is, but it isn’t mine, because I would never, ever claim it. ) anyway, the pain started around the bottom of my ribs, like a draw string, plus deep inside my chest cavity, I would get Charly-horses that we’re out of this world painful. This morphed into being behind my breastbone, and stayed there until my sessions with Clardy. No doctor ever asked about the origin of the pain, assuming it belonged to the nerve center there in the thorax, which it may be, who knows? I don’t care – I just wanted it gone, not just bandaged.
I’m now three weeks past my last session with Clardy (who is an angel – really, she is an angel). I’m still susceptible to heat debilitation, and I’m a bit still easily fatigued(remember I’ve been bedridden for nearly 5 years, but I am now 100% better. I eat organic foods without being a zealot, I rest a lot, I take 2-6000 iu’s vit C/day, lots of water, 1000 mgs L-lysine/day, plus colloidal silver (still figuring out how much of that). When I feel a slight twinge of pain in the thorax area I say to myself, “there is no gain in pain”, repeating if necessary till the pain is gone. I think of it as a kind of muscle memory that just needs retraining.
Clardy has a book on Amazon, plus a group to join if the healing sessions are out of your pocket book. I urge you to consider not extending this time of being ill because of purse matters. And no, I’m not a wealthy $ person. We have one income and live in a trailer house in the path of Harvey. So if I can do it, you can too. Love and light to you all, Linda.
Laura Zera says
Wow, Linda! I’m so glad you’re doing so much better! No, you hadn’t mentioned Clardy before, but it had sounded like you were starting to turn a corner when you first posted, so maybe you’d just started working with her. Amazing news, though, truly. Thanks so much for the update.
p.s. I’m right there with you on the mega doses of Vitamin C and lysine.
Linda says
Hi Laura,
Thanks for the good words. I’m still great, starting to paint again for the first time in more than two years. I’m back to taking care of my home for the first time in I don’t remember when. And – am going to start working part time on one of our two businesses. Yay! I walked up to the barn and back, about an eighth of a mile one way, for the first time in nearly four years. My memory comes and goes – mostly goes; I’m going to the doc tomorrow to see about switching the antidepressants I take. They’re not working well enough. I’m almost off the morphine, and seem to have passed through the worst of the withdrawal symptoms – yay! It hasn’t been too bad – for me anyhow – I’m sure everyone else will be glad to hear the news. Not sure if they’ll let their guard down quite yet… I haven’t been awful, just crabby. Ok, maybe I have been awful. At least I don’t mind apologizing – often.
I’m sure I’m going to have at least one more session with Clardy about the hot flashes, unless it’s the morphine, which, in that case they should stop when the morphine is gone.
I’ve found that the Lysine is acting like speed (which is funny because I take speed for ADD, and it puts me to sleep…), and my mind was whirling so fast it was uncomfortable. So I’ve quit that, and take the vit c in huge amounts still, plus whatever vitamins my body asks for. And I’m relentless about No Stress. Now I have about twenty pounds to loose – I’ve lost twenty already. This last is more difficult than I expected it would be. But, there you are. My nails are growing back, and my skin is beautiful, all of which tells me my body is healing well. I hope I haven’t rambled too much.
Laura thank-you for having this place for us to belong. Not everyone has a sturdy support system, but even with one, it’s beyond great to have this to come to.
And Happy Valentine’s Day to everyone!
Linda.
Laura Zera says
Linda, I’m so so happy to hear about your progress!! That is so amazing on so many fronts — being able to work again, walking so much, losing weight, off the morphine. What a change a few months has made. And I think people will forgive you your crabbiness. It’s hard to be gracious when you feel like crap!
Interesting that the Lysine is making our mind race. I take it right before bed and it doesn’t bother me a bit. Just goes to show how different our bodies can be. If it’s not working for you, you might want to try Monolaurin for immune system support instead. I’ve taken it, and am just about to try Lauricidin, which is a brand of Monolaurin, and which a couple of people have said their doctors recommended.
Glad you stopped by, and hope you keep on getting stronger with every day. xo
Laura Zera says
Hi Natalie,
Man, you asked some good questions. I don’t have the answers. I hope maybe some folks here will chime in with what information they know regarding chronic vs. intermittent EBV. There have been others who have posted here who deal with intermittent EBV. As for whether some people have it for a long time/forever and don’t know about it, I believe that’s a pretty strong possibility. And I think you’re right, if your underlying immune system is strong, then your body would likely have fewer symptoms and/or the virus would be more intermittent.
One thing, reading your post and Linda’s reply to your post is motivating me to clean up my diet some more. I fell into all sorts of debauchery over the Xmas holidays — wine, carbs, sugar, dairy, gluten — and I haven’t made it all the way “back” yet. And diet is so important. I think you’re smart to make those diet adjustments that you mentioned, and also maybe talk to an ND or other doc — I don’t know how infectious and immune docs respond to queries about EBV, but that regular PCP that I had a phone call with last week (because I have to pick a new PCP with my new insurance this year) told me she doesn’t treat it at all. So she won’t be my new PCP!
Good luck, keep us posted, and I hope you’re feeling in balance again soon. xo
Doug says
Hi Laura,
I am 48. Just came across your article. Maybe you can help.
For the past 5 years I have tested across the board high and positive for all the EBV markers (IgM, EAIgG, VCA IgG, EBNA IgG).
I had mono when I was 16.
I really don’t have a lot of symptoms expect maybe more fatigue than most (have a 5 and 2 year old). I still work out every day.
Do you have any idea or experience with these markers and results. Tons of research and I don’t see a lot of people with these results. Suggestions?
Laura Zera says
Hi Doug, from the results people are posting here, I think there have been some (I know Christine who posted in Sept.) with high numbers across the board. If people tend to have one low number, it’s the IgM number, which seems to be the least important one, if I’m interpreting what I’ve read correctly. But whether it’s 3 of 4 or 4 of 4 numbers that are high, I think it’s worthy of attention (and “high” is relative — it’s all high if it’s beyond the range, technically). As for symptoms, I felt like you — not a lot, I would say, except the fatigue, and poor muscle recovery after a workout. But then I’ve also had other issues that I never attributed to EBV, like sinus problems, that now I’m thinking are connected. Maybe you’re lucky and have few effects from the EBV, but I’d still give it attention.
In the five years you’ve been testing high, have you undertaken any treatment? I’m also curious what led you to get tested the first time, since symptoms weren’t a huge issue.
All best to you!
Jenifer says
Hi Doug
I’m in the same situation as you. I have tested high on all four since mid 2014. I suspect they have been high for much longer than that.
My doctor is telling me that I should take action on this. But besides the fatigue, I feel fine. And my labs for everything else are normal. Stool sample is also mostly normal. I would have though that something would come back showing that I’m sick if I really do have this chronic state of EBV.
When you google Chronic EBV, the search results say I should feel pretty lousy. Knock on wood.
I’m wanting my Doctor to order a PCR test for my EBV. to see if I really have it.
Have your doctors told you anything??
Doug says
Jennifer,
Would love to chat. Seems we are in similar boats. Do you have Facebook profile?
Jenifer says
Yes. I’m at Jenifer Haner (one N in Jenifer). Or you can email me at Jenifer.haner@gmail.com
As next steps, I’ve started high dose vitamin C IVs with my new ND who claims to have experience with this. But I also plan to call a different doc and ask for a PCR to confirm viral load. I read about a study last night that shows people (healthy patients) can show active viral loads frequently without being symptomatic. They can also have reactivated IgM and not have a viral load. Both positive is also possible of course.
I am also going to try to find an expert nationally and see if they will accept an email from me.
Pamela Goring says
Hi Laura,
I was just recently diagnosed with reactivated EBV. I never knew I even had it! I think I feel pretty good and have excellent adrenal labs done frequently since starting menopause. I am sure this has contributed to me feel well. My EBV was 443. My NP even tested for food allergies and came up with zero. She blames it on stress from the holidays and not eating right. I have been on HCG for the last 21 days and have dropped 10 pounds, which feels great. These labs were before I started eating cleaner. I am curious to see if the numbers go down at the next lab appt or if I can expect to start feeling like crap at some point. I am quite boggled!
Laura Zera says
Hi Pamela, I’ve not heard of the HCG diet before (just Googled it) — was it a suggestion of your doctor, or something you opted to do yourself? And are you doing anything else to treat the EBV? As for starting to feel like crap, I think that can happen from the EBV itself, and also from the EBV dying off, e.g., you can feel worse before you feel better. Ultimately, if I were you, I’d keep on reading and researching (as you likely are, given that you found this post!) and figuring out what kind of treatment you want to embark on to move your numbers if they don’t move themselves. Eating cleanly is definitely a good start. Good luck!!
Saira Arnold says
Hi Laura! Thanks for sharing your journey! I’m wondering if you followed Anthony William’s protocol of healing? I’ve been having some great healing from my longterm EBV infection and was just curious if you have not had any success with his information?
Thanks! 🙂
Laura Zera says
Hi Saira, I’ve not read Williams’ books in full, only the excerpt that I mentioned in the post. But I now have his books on hold at the library (Medical Medium and the thyroid one that’s mentioned in a recent comment) so will be looking at his protocol. I’ve received all of my treatment from a very good naturopath, and admittedly, some of my own perseverance has flagged at times, e.g., I’m supposed to take charcoal 30 minutes before every meal, but I’m not good about remembering, and electronic reminders are of limited effectiveness for me.
That said, I’m glad that you’ve had success and so it does intrigue me more to read in full what he’s written, and I hope you continue to stay the course and keep getting better!
Kelly Saloka says
Hello Laura!
First of all, thank you for bringing this epidemic to light (even though reactivation has been called rare, yet, it isn’t really all that rare). I have been fighting a losing battle for the past two to three years following multiple knee surgeries and other life stressors. I work full time, but every two to three weeks, I hit a wall and cannot get out of bed. I hurt all over, and my ears ring constantly. I feel like I use my weekends to recover from daily life. That’s not really living; I refuse to accept that.
After reading this blog, the Medical Medium, and several other peer-reviewed studies on the subject of EBV, I concluded that my incredibly unpleasant mono experience in 9th grade (about 30 years ago) that kept me out of school for 30 days, was probably the cause of my Hashimoto’s (diagnosed 14 years ago) and my current ailments. I find it so interesting to look so healthy on paper (CBC and all other tests), yet I continue to feel like crap and like I am living in a fog all the time.
After seeing your test battery, I recently had my naturopathic ANP run the same EBV panel. 1. Negative (like yours), 2. 39 (high), 3. 247 (super high) , and (drumroll, please) 4. >600 (which, technically is unmeasurable). Finally, a name for the dog that bit me!
My ANP put me on lauricidin, zinc, saventaro (cat’s claw), DHEA (my numbers are low) and about 2 grams of oral vitamin C. The next step is to have IV therapy. One involves high dose vitamin C (apparently capable of curing many viral maladies including polio and hepatitis- of course I have been reading extensively on it, now), a very compelling treatment. Thomas Levy wrote a book about vitamin C and infectious disease and its use in past medical practices prior to vaccinations. I highly recommend it. The second is ultraviolet IV therapy (used frequently in Germany and other European countries- go figure). Both IV therapies inactivate all sorts of microbes, both viral and bacterial. I am opting for these routes, as my ANP has researched the use of acyclovir and it’s efficacy, and it appears that it is not a particularly effective treatment.
I find it very interesting that most insurance companies do not cover the IV therapy, yet they cover chiropractic, acupuncture, massage therapy, and expensive chemical treatments and antibiotics. My guess is that there isn’t as much money to be made in ascorbic acid (vitamin C) and UV therapy. Regardless, I am going to invest in the therapy. I feel like the rest of my life depends on it.
That’s all for now. I will keep you posted if I regain my life.
My Sincerest Admiration and Thanks,
Kelly Saloka
Laura Zera says
Hi Kelly, thank you for sharing what you’ve learned and discerned from your research and doctor visits. I don’t think I mentioned it in comments before, but my doctor said that at a dose of up to 35 grams a day, Vitamin C acts as an antioxidant, but over 35 grams, it becomes an antiviral. Crazy, hey?! Do you know how much the dosage is with the IV treatments you’ll be getting?
I’ve had a few people write about trying the IV and UV treatments, but no one has yet come back to share their outcomes. I’d love it if you can find the time do that. I think efficacy and experience with these treatments are big questions for many who are dealing with EBV — I know they are for me.
I had taken Monolaurin for about 4-5 months at one point, but you’re the second person (I think) to mention Lauricidin as the form/version that’s been recommended, so I’ve just sent my doc an email about it. (Also, I think others here have pieced together a link between EBV and Hashimoto’s.) Again, thanks for sharing, and I wish you all the best for your healing journey. May your energy return! Weekends aren’t for sleeping, I agree! xo
Sara Soskolne says
Hi Laura & Kelly,
I’ve had a reactivated form of EBV (on and off, or at least every time I’ve been tested for it) for at least the last 10 years, when I developed some sort of mysterious autoimmune condition that is mostly a malfunction of the immune system in my gut — unlike most of the folks here who have sinus issues, my sinuses are fine and my gut is what seems to be affected. I’ve also had a low grade fever for much of that time (and like many of the folks commenting here, thyroid issues since a couple of years prior).
Like you I have a normal IgM, and tested negative for the active virus in a DNA PCR test, but currently my other levels are:
EBV Early Antigen Ab, IgG 132.0
EBV Ab VCA, IgG 413.0
EBV Nuclear Antigen Ab, IgG 411.0
I have to try and treat this urgently as I have to have spine surgery, and a latent infection is apparently a serious risk factor for the kind of surgery I need to have (artificial disc replacement — latent infections can cause the bones to go soft and reject implants, a process called osteolysis. Scary!)
I’ve also been dealing with a rotating slate of gut bugs (thanks to the immune problem I mentioned) which the theory is may be what’s causing my EBV to reactivate… but as has been mentioned elsewhere, it’s hard to tell what’s the chicken and what’s the egg at this point.
So I’ve been taking the full dose of Lauricidin for almost 3 months, and for the last 3 weeks have been doing IV treatments with 50mg Vitamin C 2x/week and Glutathione 1x/week. My levels had improved a bit after the first 6 weeks of Lauricidin (and assorted gut bug meds), but oddly since the IVs they’re now back to where they were, and in some cases higher. (?!)
IV ozone has been suggested as a next possible thing to try — similar to the UV treatment mentioned above, they remove 50-60cc of blood, ozonate it, and return it to your bloodstream via IV. The Lauricidin is supposed to have an effect after about 3 months, so I guess my system is just a bit stubborn.
All I know is I’ve read that in people with autoimmune conditions who also have EBV, successfully treating the EBV can simply cause everything else to resolve too. So I’m alternating between high and dashed hopes at this point.
I really appreciate finding this conversation and hearing about everyone’s experiences — since you were mentioning trying Lauricidin and Vitamin C I thought I should share mine too.
Best,
Sara
Sara Soskolne says
Oh and I forgot to mention: I did actually have mono in mid- 2003, and these issues started in 2007-8 (thyroid diagnosed 2006). But I’ve read that many people contract EBV as babies/small children and are never even symptomatic — I think it’s only as teens/adults that it manifests as mono.
Laura Zera says
Hi Sara, I sincerely hope that you get some good results with your protocol so that the EB virus doesn’t delay/prolong the treatment you need for your back!! That’s frustrating that your numbers had gotten better, but then worse again. I sometimes wonder if we EBVers sometimes have our recovery thwarted by just being out in the world and being exposed to common bugs and illnesses that wouldn’t affect others (with healthier immune systems) the same way.
My ND has said that the other place that EBV likes to hang out (besides sinuses) is in the gut. And yeah, chicken or egg – I look back on some of the things I’ve had over the years (like, many years ago), and wonder if I even had active EBV then and just didn’t know about it. Or if those things created a happy host for the EBV. I guess it’s hard to ever know for sure.
Good luck! I’m glad you seem to have found someone to work with you who knows what they’re doing. That is promising!
Carla says
Thank you so much for this. My story started when I was 19. (I’m 41 now). I had a golf ball sized lymph node pop out of my neck & started feeling awful. My PCP sent me to a hematologist because my liver studies & wbc count was a mess. They tested for everything & it all came back negative. Then my spleen became enlarged & a week later I got strep. I honestly thought I was going to die. I was bedridden for 6 weeks & when I went back to college, I relapsed & had to take a leave. At this point the EBV came back positive. Before this happened I was the healthiest person in the world. After, everything changed. I caught every cold, flu & all of a sudden was allergic to everything. I never had allergies in my life. I was lucky that I was still able to function pretty well throughout my 20’s but was sick 3-4 times a year. Everything changed at 32 when I started getting sinus infections. I had the sinus surgery at 34 & since then my life has been on a downward spiral. I am sick with sinus infections constantly. I have been on every antibiotic imaginable for months at a time, but I think when the Dr. added steroids to the mix is when all hell broke loose. I would feel great when I took them, but immediately after would be fatigued & more sick than ever. After doing the research, I believe they reactivated the EBV. The past 2 years has been the absolute worst. I had to quit my job due to being so sick I could not get out of bed & get strange rashes constantly. As someone who runs marathons & is super active when I’m healthy , it’s made me extremely depressed. It’s ruined so many friendships because no one wants to deal with me canceling plans all the time & even family members don’t get it. Fortunately, I have a super supportive husband but he is confused by it all as well. I always wanted children but after 2 miscarriages, I realized my body is just too exhausted for me to entertain that possibility anymore. Some days I have contemplated suicide bc I feel like I can’t live like this anymore & mainstream Dr’s don’t get it. I tested positive for Hashimotos a few months ago but according to my Immunologist, not enough for medication. When my last EBV came up active, she said “ It’s a virus, all you can do is rest” At this point I realized no one can help me but me. I started researching natural cures & started changing my diet and going the supplement route. It was somewhat helpful, until last week when I developed an ulcer & of course my Dr. thinks it’s from all the vitamins. I’m at my wits end. I went from being this super in shape, happy girl who loves to travel, to being this couch ridden sick person who is terrified to make plans to do anything because I don’t know if I will be well enough to do anything. I really appreciate your site, because it makes me feel less alone & understood by someone (although I do not wish this on anyone). I’m hoping that all of us together can figure out how to beat this thing for good. I purchased the Medical Medium book yesterday & am hopeful it has some advice in dealing with this. Thanks again & God Bless all of us!
Laura Zera says
Hi Carla, sorry it’s taken me so long to reply to your post, and I’m SO sorry you’re going through this. Gosh, you’ve really had one thing after another. And a lot of what you wrote is eerily similar to my journey — and to others who have posted here. So at least that can be somewhat validating in that we’re not going crazy and imagining that something’s not right, even though outwardly we look just fine.
Glad you got the book — I just picked up a copy from the library today — and that you’re taking supplements. To help the stomach lining, maybe try Integrative Health’s Rhizinate chews — it’s deglycyrrhizinated licorice, and they’re inexpensive and they taste good! I’ve been taking them for a few months, just one or two per day, and my stomach is much better.
Also, consider shopping for a new doctor, or a doctor who can be a complementary resource to your MD. I see an ND for my EBV treatment. This is a big enough thing to work through that you really need someone who is firmly on your side. And it’s complicated, so find someone who really knows how to work with EBV and all its ancillary/related issues and who can help you learn how to take care of yourself.
Re: your miscarriages — you’re totally right that your body isn’t up to taking on something big like a pregnancy right now, but I also want to share this information with you, about a MTHFR gene mutation that results in higher risk of miscarriage. It’s something that’s easily tested for and easily treated (I have it, and I take 5-MTHF supplements): https://www.healthline.com/health/pregnancy/mthfr#risk-factors
Good luck! I hope you gain some traction in both your treatment and your healing. Stop by again if you have any questions or have progress to report! xo
Krista M says
Just was diagnosed with reactivated EBV. And started my medication and supplement regimen. Hoping and praying it “works.” Whatever that means. I just want to feel normal and not struggle through each day. Wish there was more info about this and a clearer way to DEACTIVATE this.
Laura Zera says
Hi Krista, I’m totally with you when you say you wish there was a clearer way to get rid of EBV. Not only is it kind of hit and miss, it’s different for everyone. There’s lots of good information in the comments here, though, so if you’re initial treatment regimen doesn’t give you good results, you might find ideas for ways to tweak it using some of the other commenters’ inputs.
Wishing you all the best for your healing!
Kristin Doyle says
I don’t know what is going on. My symptoms are: swollen occipital lymph nodes out of nowhere. Rash that lasted 24 hours. The joint pain for 2-3 days. Lymph swelling persisted for 3 weeks. Then it kind of went down. It’s been 2.5 months and I still have sporadic joint pain and lymph node swelling. Like today, I felt a dull pressure on the bck of my head, and sure enough swelling again, after days of being okay-ish. I was tested for RA, lupus, Lyme, and had a few other random ones- all normal. Cbc and cmp were normal. I was given antibiotics just in case. I had mono at 17 that was severe. Pcp says whatever I have is ‘viral’ and that was that. Just wondering if anyone relates?
Laura Zera says
Hey Kristin, sorry you’re still in the search for answers. On the upside, glad you tested negative for those illnesses. Did you get the Epstein-Barr virus test, though? It doesn’t sound like it. Might be something to consider. Your symptoms do sound virus-ish. And for what it’s worth, I don’t think PCPs will do much with/for EBV. If yours will at least requisition the test for you, then you could seek out someone else for treatment, like an ND. Good luck and hope you’re back to full health soon!!
Alicia says
Kristin,
Definitely get the test for a EBV and especially the one that will say if it is chronic. I have had swollen nodes constantly in my armpits for 2 years now. They seem to get worse during PMS but they are very painful and large at that time. I’ve had chronic EBV and chronic CMV for 7 years now and a thorough lymph scan which was negative for any cancer. The nodes are just something I’ve learned to tolerate now. I’ve realized my body is constantly fighting and it morphs into different forms from time to time. Exercise, saunas, diet and rest help get me to the other side. Good luck and it might not go away but it will get easier in time once you learn what works for you.
Stacy L says
Hello! I think I had mono about 7 years ago with just a really sore throat for a week, and it reactivated and kicked into high gear when I had baby #3 in January 2013. I don’t think it has stopped reactivating since that time. I think I also had underlying low ferritin {iron that doesn’t show up on a normal CBC} since then, which certainly hasn’t helped. I have been under a lot of stress since July 2014, so that’s made it worse. I don’t have pain, just fatigue, but I’ve been on Plexus since 2015/16, and I think it’s played a huge role in keeping the virus from taking over, although it doesn’t have anti-viral properties, just manages gut issues and candida, which hasn’t been an issue for me.
I finally found a natural doctor in October 2017 and we have been working since that time to get the virus load, and effects of the EBV, straightened out. For me, the EBV has thrown my thyroid out of whack, and caused a ton of inflammation in my neck/back, in addition to the fatigue. My natural dr has started me on low dose immunotherapy, monolaurin, ferrochel, coriolus-mrl {mushroom therapy}, and adrenal-plus (started at 6/day). The immunotherapy is an interesting concept, and has started showing up in cancer treatment. It’s a lot like immunizations in that it tells your body to fight the virus, using an deactivated form of the virus. The hard part is finding the right dose in hopes of getting seven weeks of relief. We started with #18 and it knocked me on my tail for a solid month. So we went backwards, and went up {lower number is a higher dose}, and I’m just now getting back to #18 in hopes of finding the right dose that helps me.
I also use a lot of other nutrition, including Juice Plus for my fruits/veggies/berries, the Plexus triplex (Slim drink, biocleanse, and probio5), xfactor multivitamin, and Ease (anti-inflammatory), collodial silver, and just started increasing my vitamin c. My friend Breanna is a survivor after battling and beating Lyme, EBV, strep, shingles, and mold exposure, and she attributes her success to Plexus and vitamins. Feel free to email me with questions, and I can give you her info to contact her. I look forward to revisiting this discussion in finding therapies that work for people with chronic EBV.
Stacy
In October 2017, my #s were EB CAP Igg 93.3; EB CAP IgM <10; EB Nuclear AG 252; EB EA-D Ag 13.1; Ferritin 5 (Normal 11-307); Hct 36.2; MCV 81; MCH 27.2
Laura Zera says
Hi Stacy, glad to hear you’ve started tackling the virus head-on. I’ve not heard of immunotherapy before — are you literally getting injections of the Epstein-Barr virus??
Re: monolaurin — I tried monolaurin last year and didn’t notice any difference. Recently, I started on Lauricidin, which is the “original” monoluarin formula, and I immediately noticed that something was happening, mainly because I started “herxing” and having flu-like symptoms. But I’m hopeful that it’s a form of monolaurin that’s more effective than the capsules I tried first. Just something for you to keep in mind in case you don’t see movement in your numbers with this current treatment protocol.
Good luck! And happy to hear your friend Breanna has made it to the other side of all that illness. May you get there, too. And me! And everyone on this thread! 🙂
Stacy L says
Yes, Laura, the low-dose immunotherapy was injections of inactive strains of EBV, in hopes that one would tell my body to kick it out. It turns out, however, that my body was really confused and it wasn’t effective at all. Once I was able to take the higher doses of the LDI, I felt like I had taken about 10 cups of coffee; wired but tired. Now I’ve started 50g Vitamin C infusions with wormwood (artemisia). I will keep you posted on progress. My ferritin is now at 57 so we have a lot of work to do but gaining ground. She also had me start on detox and an EBV/H6 supplement.
I sure appreciate your recommendation on the monolaurin alternative. I am going to ask her about that; I saw you said you have to start slow.
Thank you,
Stacy
Laura Zera says
Hi Stacy, thank you for reporting back on your LDI treatments — it’s always so interesting and helpful to hear first-hand experiences. And I’m sorry it didn’t work! This seems to be the thing with EBV — it’s tricky to find the thing, or combination of things, that works for each individual.
I actually just finished a bottle of wormwood, but it was prescribed for me because my ND found I had two parasites during muscle testing. I’ve also thought about doing the 50g infusions. Right now, I take 18g of C a day, but it doesn’t go from being antioxidant to antiviral until the 35g level, I was told.
Is the EBV/H6 supplement you’re taking from Byron White Formulas?
Good luck with your next phase of treatment!
Jenifer says
I was also told to start Vit C infusions. I will start that in a few weeks. I’m not sure the duration and dose yet.
Stacy L says
Yes! She gave me three Byron White Formulas: A-EB/H6, Detox2, and A-Inflam. I’ve read a lot about inflammation and how we should start by getting the inflammation down first. Even at 50g of Vit C, I still got a cold virus from my daughter. I didn’t know it was even possible to get sick on that much Vit C!
Also, do a search for CMV. It’s another herpes-related virus. She hasn’t tested me for that yet, but she’s keeping a close eye on my ferritin (now 57, up from 5, but she wants to get it up to 200), thyroid, and B
Thanks for staying in touch; I do a lot of searching to see how in the world to get rid of this, so I appreciate anyone willing to share.
Laura Zera says
Ditto — thanks for sharing here!! I’ve got two new things to talk to my ND about from your info now. 🙂
Laura Zera says
I’d really love to hear how those go for you, as my ND said she’s had varying results with them. Bonne chance! 🙂
Lisa says
I was diagnosed with a primary immune deficiency 2 years ago call common variable immune deficiency. I have been doing immuglobin treatments for almost 2 yrs. February 10 th I came down with the flu. 6 wks later still having flu like symptoms. Sore throat, body aches , extreme fatigue and a low grade fever. I told my doctor I feel like I have mono again (1984) she did blood work. My VCA IGG AB was731 and my nuclear AG (EBNA) IGG was 454. What does this mean??? Please help. Is this why I’m always fatigued?
Laura Zera says
Hi Lisa, I’m so sorry you’ve been so sick! If your doctor is not able to interpret your test results for you, then I would take them to an ND or infectious diseases specialist and have them explain what the numbers indicate. Also, I’m told the Early Antigen is the most important/indicative number of them all, and it doesn’t look like you had that result in your report. As to an answer about whether this is why you’re so fatigued, my quick guess is “yes, quite possibly,” but the better response is that Epstein-Barr is a complicated virus and the best thing you could do is do as much reading as possible (start with the chapter in Medical Medium), and explore some treatment options. And just be aware that just like with Lyme disease, some MDs don’t treat EBV, so you may need to seek additional support if you want to address it — and I don’t want to get preachy, but you really should address it. Good luck. xo
Jamie Leclerc says
Diagnosed today with Reactivated EBV, as well as having a biotoxin illness. Which happened first is questionable, but I have been complaining to my PCPs about fatigue and extreme exhaustion since a mono diagnosis in 30 years ago.
VCA IgG: 412
EBNA: 233
EA IgG: 25
I’m honestly unsure of the complexity of this virus and can’t even think clearly enough to know what to do from moment to moment.
Laura Zera says
Hi Jamie, so sorry to hear that you’ve got reactivated EBV. I totally get the overwhelm with regard to trying to figure out what to do next. I hope you find some valuable information and ideas in the comments for this blog post — people have shared some really interesting stuff that I’ve not found in my own reading — and also a practitioner who will listen to you and who knows how to treat this. Good luck and very best to as you restore your health and energy. xo
SL King says
MyEBV nuclear was over 600 with a range of 0-17.9 and my VCA, IgG was also over 600 with the same range. Just got the results today. Early Antigen IgG is 53.7 with range of 0-8.9. I am also dealing with mercury poisoning.
Clearly, my life is overwhelmed.
Laura Zera says
Oof, sorry to hear that. Like I said to Jamie, I hope you find some useful info in the comment thread of this post, and then a good practitioner who can help you put it into a treatment protocol. The thing is, just be prepared that it can take a while to resolve. Like, six months to two years. Hang in there and good luck.
Jamie Leclerc says
I am wondering if anyone has ever tried Lyme Magnetic Protocol for their EBV infection? I went for my first appointment last week and experienced a lot of relief with aches and pains for about a week. I go back for another appointment today in hopes of putting the same symptoms at bay.
I am not sure if there are practitioners nationwide, but here is the founders link if anyone is interested in reviewing, or sharing a magnetic protocol that they have had success with: http://www.joan-randall.com/lyme-magnetic-protocol-therapy/
Laura Zera says
I’d never heard of it (even though my husband went through 2.5 years of Lyme treatment). Thank you for sharing, and glad to hear it brought you some relief. Hope that continues!
Jamie Leclerc says
Despite its name referencing Lyme, it is apparently useful across the board for infections. It has a base of energetic medicine, using applied kinesiology as it’s base, and of course magnets! There are different levels of practitioners, and all are able to reference back to it’s founder, Joan, who experienced years of Lyme and other biotoxin illnesses (they are really, at their base, one in the same). My ND is certified in the technique, but due to the distance between us, she had to refer me to a closer practitioner. I know there are a lot of different types of magnet therapy, but this seems to have a solid base of thoroughness to look for if anyone has an interest in at least attempting this route for some relief while also working with other therapies. Joan, herself may even be able to point to a fellow in your area if there is an interest. Personally, I am willing to try just about anything for even a grain of relief! Be well!
Deliverance Bougie says
I just wanted to give an update because I am getting some new treatment now. First, I have a question: What is the difference…IS there a difference between reactivated EBV and active mono? The first time I was tested for EBV my NP just said I have reactivated EBV and started me on Lauricidin and C. Second time I was tested she said I have active mono. When I asked her what it was in the test that she determined that by, it seemed like the same as reactivated EBV, so I’m a bit confused. Maybe it was because my numbers went up?
Now I am on a very low dose of mynocycline for 6 mos, olive leaf extract, astragalus, huperzine GPC, and doubling up on probiotics because of the antibiotic. I did start to feel better, but I had other stressors that caused a decline again and now we are painting our house and I react very strongly to paint. I will be tested again in 2 months to see if my numbers have improved. Here are my first and second results:
VCA IGM: <10; 750
EA IGG: 16; 46.9
NA IGG: 313; 542
Deliverance Bougie says
Hmmm….for some reason my results posted kind of weird. Let’s try this again:
VCA IGM: <10; 750…..EA IGG: 16; 46.9…..NA IGG: 313; 542
Laura Zera says
Hi there, thank you for the update because you raise some really interesting questions, and created some new ones for me!
– My understanding has always been that mono and reactivated EBV are different, that mono is a precursor for the virus, but not the same as its reactivated form. And I also thought the test for mono vs. reactivated EBV was different, but maybe I’m wrong about that. So I hope you ask your NP again for some clarification. This would be good to know! (Also, in the book Medical Medium, Anthony William describes mono as being Stage Two and reactivated EBV as a much later stage, five or six, I think.)
– I don’t think I’ve seen anyone else post that they’re taking an antibiotic for the reactivated EBV, so this is interesting, too. It’s maybe the treatment for mono, though?
– Huperzine is also new to me, and I read it’s closely associated with brain function, so again, an interesting choice.
– Have you tried Lauricidin? After several people mentioned it, I started on it and I’m feeling better. But man, you have to start slow to build up to the full dose of one scoop of pellets at a time. I literally started with one pellet, and when I jumped up to seven or eight too quickly, I had wicked headaches. Now I’m on the full dose.
Good luck, and hope the painting is over with quickly! I’m going to post my own follow up in about a month, once I’ve been retested. But I am hopeful my numbers are down, because I am feeling better. Although side note, my ND is now presumptively treating me for yeast, which is a “co-problem” that several others mentioned in the comments on this post. So that could also be something to look into?
Deliverance Bougie says
Yes, everything I listed in my post is for the mono. And yes, I might actually be one of the people you talk about mentioning Lauricidin because I referred to it in my comment in January. 😀 That reaction you had is strange! I never noticed anything when I started taking it. It is very possible that I just wasn’t connecting any issues to the Lauricidin.
Fortunately I recently found out for certain that I do not have yeast overgrowth. I have had candida in the past, so I am glad to know it is not an issue now.
Jenifer says
hello!
I am so glad I found you website and this article. I was first tested for EBV in 2014 when I was in the hospital after catching a nasty bug while working as a humanitarian in South Sudan. I had gotten Hepatitis E (I had never heard of E! It is fecal oral, similar to A). My doctors told me that the Hep E likely reactivated the EBV and to wait for the acute Hep to clear and I would be fine. Now that I know better and I’ve been thinking back, I can recall that I’ve always been a little more tired than my friends and family since I was in my early 20s. My family and I both dont recall me ever having Mono.
Now fast forward 4 years (always feeling tired) to a couple weeks ago. I went to a ND with the goal is “getting health” in preparation for a double jaw surgery I have coming up in June of this year. My goal was to get “super healthy” since I know i’ll be knocked down by needing to drink all of my food for around 6 weeks. She ran a CDC and thyroid panel, which all came back normal. She also ran my vitamin B12 and D. B12 is ok. D is low like most people. So I’m now taking 6,000 IBUs of vit D. My EBV came back around the same as they were in 2014!! She said that it was likely due to recent stress. But I’m not particularly stressed! I mean….a little stress here and there. But nothing truly noteworthy.
Here are my levels:
EBV Ab VCA, IgM — 152.00
EBV Early Antigen Ab, IgG — 131.00
EBV Ab VCA, IgG — >600.00
EBV Nuclear Antigen Ab, IgG — >600.00
All are high. Bummer.
So i emailed my neurologist and PCP. Both said to do nothing. My Neurologist said that there isnt a strong link between EBV titers and auto immune illness. My PCP said that he has never really seen EBV levels come down but that my ND might disagree. I emailed my ND back and she said to try getting my gut under control and to come back in and stop overreacting (my email did have a concerned tone). I started to do my own research and found the “Auto Immune Protocol” and Terry Wahls diets. They’re basically focused on reducing inflammatory markers in your system and allowing your body to fight only the illness in your body — rather than also fighting off allergens and environmental toxins. So i’m week 2 into this diet. It’s hard, but i am committed to fighting this…. even though it seems like it could be an impossible battle.
have you heard of anyone recovering and bringing their levels back into a normal range?
I also wonder, since this hasnt been studied, what percent of the population has elevated EBV? but maybe asymptomatic? I wonder if there really is a causal link between auto immune illnesses and cancer. or if they test people with these illnesses, see that they have elevated EBV and say “people with ____ have higher levels of EBV”. But what if these levels are an indicator or something else, that we are treating. And that something else is the link.
I remained concerned and afraid…
I am so happy to have found you!
Jenifer
Deliverance Bougie says
Hi, Jennifer.
I was diagnosed with Hashimoto’s July 2017 and have been doing the Autoimmune Protocol ever since. I have also been steeping myself into the AIP community ever since with podcasts and articles. Many, many people will say there is a strong link between EBV and autoimmune disease. Recently this article was published about a study linking mono with 7 other diseases and more research is being done: https://www.sciencedaily.com/releases/2018/04/180416121606.htm
I get a lot of information from AutoimmuneWellness.com and I listen to podcasts from Phoenix Helix and The Paleo View.
I just have my EBV levels in February and I will have labs again in a couple of months. I will see then if they have done down. I posted above about the regimen my nurse practitioner has me on right now.
Jenifer says
Keep us updated! I’m just starting in the AIP community. I’m hoping that I found this fairly early and can stop it in its tracks. Maybe prevent Autoimmune Illness. Or slow the progression.
Would you mind if I ask you a couple questions by email?? my email is jenifer.haner@gmail.com (one n in jenifer).
thank you!!
Deliverance Bougie says
Jenifer, I sent you an email a while back. Did you get it?
Laura Zera says
Thanks for sharing this article link, Deliverance!
Laura Zera says
Hi Jenifer,
Okay, first off, South Sudan!! Did you blog about it? Can I read more somewhere? I have a Swazi friend who worked there for a while on contract for the African Union and she had some pretty startling things to say about it. Also, I’ve never heard of Hep E!
I’m not surprised your neurologist and PCP said to do nothing. A lot of people in the medical community aren’t on board with treating EBV. I might have been more prone to follow that kind of advice if it weren’t for the fact that I’d just gone through a 2.5-year treatment protocol for Lyme disease + co-infections with my husband, after which he finally tested completely clear. But lots of practitioners have no clue how to treat Lyme, including his PCP.
Does anyone ever recover and bring their levels back to normal? Well, a lot of people who have posted here haven’t come back to report progress, so I don’t know. My ND has said she’s had people’s numbers go down, but that just the EBV Nuclear Antigen Ab, IgG will often stay high for a long time, if not forever. I’m getting retested relatively soon and I really feel like my numbers are going to have gone down, just from the way I feel, but we’ll see! They didn’t go down in my first four re-tests over two years, but we’ve continued to change up my treatment protocol, and also treat for other things, like yeast.
As for what comes first, the “other illness” or EBV, I don’t know if anyone knows, but like in the article that Deliverance posted, there is research being done to show linkages between EBV and plenty of other diseases. I just got the Anthony William book on thyroid diseases from the library today, and it has a bunch of pages on EBV in it.
Finally, I can’t emphasize enough how important it is to find a practitioner who knows EBV and can give you answers to your questions. If your neurologist and PCP are ignoring it, then they’re not the right people for this particular condition.
Hang in there, and hope your auto-immune diet brings some good results — I’d think that can’t be a bad idea in any situation, given all the things that we eat and are exposed to these days, and how we’ve strayed from what our ancestors ate. Keep us posted! xo
Jenifer says
I found something out that seems interesting. I read that the Hep virus (A&C) can cross react with the EBV test. I then read further to see that Hep E is included in this! BUT…. the studies report that the cross reaction happens when the Hepatitis is active. What is interesting is that I had Hep E (which is fecal oral, similar to A) back in 2014 after living in a refugee camp in South Sudan. 7 out of 60 expats got Hep E.
I’m now going to write to my former colleagues and see if any of them have the same reaction to the EBV test as me! If they say theirs is positive, then it could be a false neg. Which….wouldnt explain why I’m so tired all of the time.
I just wish there were better studies out there.
Laura Zera says
Oh, that’s very interesting. What lead me to getting tested for EBV is that when my husband had Lyme, I was tested for it (because it’s transmittable through body fluids — who knew?!!). And a “positive” response for two of the titers/bands on the Lyme test (but negative for the others) led my ND to then test me for EBV.
I’m super impressed with your South Sudan work. I thought I was pro-level when it comes to Africa — I’ve lived and worked in South Africa and Cameroon, and have backpacked alone through a good chunk of the continent — but you’ve achieved total bad-ass status.
Kristi says
Newly diagnosed with EBV and I don’t think my ND knows how to treat it along with the Lyme, Mycoplasma, Candida and a couple others. My numbers seem pretty high:
EBV, Chronic/Active Infection
EBV Early Antigen Ab, IgG >150.0 High
EBV Ab VCA, IgG >600.0 High U/mL
EBV Nuclear Antigen Ab, IgG 130.0 High
And I am miserable. So tired I don’t get out of bed. Rarely leave the house, can’t drive, sleep more hours than I’m awake. She wants me to start Monolaurin 300 mg once a day increasing slowly to 900mg 3 times a day. Seeing this is related to cancer has me pretty worried because some type of leukemia or lymphoma has been in the back of my mind for months now. Are there things to watch for? I am allergic to anti-virals (1 dose of Valtrex made me break out in hives and have shortness of breath) so those are not an option for me. Should I be looking into more aggressive treatment? My body is so hyper-hypersensitive to everything it’s insane! Any advice is very much welcomed here!
Laura Zera says
Hi Kristi, I’m really sorry you’re going through this. The fatigue is killer. And I’m not a doctor, keep in mind, but I will say that monolaurin is a commonly used treatment (I tried regular monolaurin first, then just did a 3-month course of Lauricidin, which I felt was more bioavailable to my body or something because I actually felt it working). As for Valtrex, I took it for a long time — more than a year — and it did nothing for me. The point being that there’s no one treatment that seems to work for everyone. This may be because EBV has morphed into so many different strains.
Regarding looking at more aggressive treatment, yes, you could of course do that, but you could also see how your body does using supplements and diet changes and re-test in 6-8 months to see if your numbers have moved. I highly recommend looking into diet additions/changes. The Anthony William book on thyroid healing details all the good stuff that can act as an “eviction landlord” for the virus, or help strengthen the gut/immune system, etc. These include things like cilantro, celery juice, cucumbers, mangos, wild blueberries (emphasis on the “wild”), spirulina, barley grass juice powder, Atlantic dulse, apples, and others. And, as with many diet protocols, the recommendation is to cut dairy and gluten, and especially eggs.
Good luck, and although getting over EBV seems to take a good chunk of time, I wish for you that you have an improvement to where you can function better. xo
Kristi says
Thank you! After researching a little more about Monolaurin and seeing how incredibly beneficial it can be, I will definitely start taking it as it sounds like it can even make other treatments just be that much more effective, but will keep the Lauricidin in mind in case I don’t see any benefit with the formula I just started. Have you ever had your genetics done to see if you have an MTHFR, CBS or other genetic mutation that could be causing some methylation or detox issues? I had mine done and have both of those as well as a few others that are going to make things a little more challenging. I also have quite a few COMT mutations which seem to point to experiencing more pain and sensitivity than most. My ND is attempting to use what information she can get from my genetic makeup to help decide how to move forward with treatment options. (I had my genetics done through both 23andme and Genes for Good, which actually offers the service for free when you participate in their study, that has potential to lead to some truly amazing discoveries!) GfG provided a lot more information but results took a long time due to the growing number of people signing up and participating.
I also appreciate the diet suggestions and have a lot more learning and research to do as I discover more about the power of food. It seems just as, if not more, important as treatments for supporting the healing of every part of the body and making sure there is no fuel for unwanted viruses, bugs and fungus! I have Celiac so gluten is already off the menu and with my gastric sleeve (weight loss surgery), so many other foods have also been eliminated due to various intolerances. The most frustrating part is that the best foods for nourishing the body, seem to be the worst ones for my gastric sleeved stomach! Dense grains, fruits (especially juices), veggies, rice and meats can make my stomach hurt for hours afterwards and/or cause abdominal pain and gas that ranks right up there with the pain of childbirth. It is extremely aggravating! Between that, Celiac, the Candida battle, EBV, Lyme and everything else where I’ve been advised to eat this or not eat that, my current safe choices can probably be counted on one hand. I used to be ok with cheese and nuts (literally lived off Sargento Balanced Breaks for awhile!) but have discovered that those aren’t usually recommended either. Well, cheese, cashews and peanuts (the 2 nuts I actually really like) usually aren’t anyway. I think pistachios, which I actually do also like, walnuts, almonds, brazil nuts, chestnuts, hazelnuts and pecans are usually considered acceptable on most diets but aside from the pistachios, I don’t care for any of those. I have noticed my tastes have been changing a lot lately so I am continuing to try new things and even re-try things I didn’t like before in the hopes of adding some new food options, but I was a very picky eater even before the sleeve and Celiac so you can imagine the difficulty now. It’s very depressing when friends want to go out to eat and I have to sit among delicious smells and food that I can’t have! My ND did suggest that once I’m healed, there is a possibility that my Celiac may no longer actually be a problem as they are finding new research about it and my constant battles with yeast/Candida could have been a factor in the test results so there is hope. Especially since I never actually had any intestinal problems with gluten and no one else in my family does either. I guess it just depends on how much overall damage can be treated, repaired and healed. Eliminating gluten did not change any of my neuro symptoms, fatigue, pain, ADD challenges or anything else at all either so it’s been confusing how both my blood work and biopsy came back positive for Celiac, but then I seem to be a puzzling case for just about every doctor I see. I can only hope!
I did have a couple more quick questions regarding my test results and was hoping you might know the answers or where I might find them? My EBV test results did not include an IgM level so my Rheumatologist was questioning the diagnosis and says that all it shows is a past infection and that I should get an IgM level done. But the test is identified as EBV Chronic/Active infection and from what I was reading underneath my IgG results on the lab report, it looks like the IgM for Reactivated EBV can show up as positive OR negative which makes it seem pointless and is probably why my ND did not include it. Do you know if there is actually any benefit to having the IgM level run or if there is a way to be able to tell just by how high or low the IgG numbers are whether it’s more likely to be a current or a past infection? I’m seeing my PCP on Monday so I’m trying to arm myself with as much information as possible and may request some additional tests to help support all of my diagnoses to ensure nothing is overlooked. This is definitely the toughest battle I’ve ever faced so I don’t want to continue to see anyone that doesn’t believe in me or anything I’ve been diagnosed with. I’m currently attempting to build a strong support network of both MD’s and ND’s, therapists, friends, family, and people I can talk to who have gone through or are going through similar challenges; information, resources, strategies and plenty of supplies for coping… including entertaining distractions and simple fun activities to use as needed!
I think overall the #1 most frustrating part of all of this is the ignorance of so many doctors surrounding the diagnosis and treatment of these types of illnesses. I’ve gone so long being sick and misdiagnosed as they literally blamed every symptom under the sun on Fibromyalgia, depression or anxiety or even pre-menopause, and I can’t tell you how many times I’ve been treated as ‘just another delusional hypochondriac woman’. (One ER visit literally put delusional in my chart!) So I just wanted to say THANK YOU again for getting this out there and hopefully as more and more people get properly diagnosed and make themselves heard, more doctors will get the message leading to more research and more/better treatment options becoming available!
Laura Zera says
Oh my goodness, Kristi, brava for your persistence. I love that you’re building a team — and the right team for you and the kind of support you need. That’s fantastic. Especially given all that you’ve got going on, it could be (and is sometimes, I imagine) tempting to crawl into bed and not get up for a few days/weeks.
One thought struck me about you, reading all that you’ve shared: I’m wondering if you’re also a highly sensitive, empathic type. I’m starting to string together a few anecdotes and they seem to indicate that HSPs/empaths have some pretty complicated health issues, because they’re just pretty complicated people all in all (p.s. I’m an HSP and empath, as well as sensory defensive).
Anyway, to your question about the IgM test, you can read my response to N’s post, just after yours, where I talk about test results and their definitions. Basically, though, in one school of thought, EBV is always an old/past infection as per IgM tests, because most of us first got it as teens. Then it reforms and reactivates later in various ways and in various places, depending on where a person might have an “opportunity” for it to take hold. My ND has always said it’s the Early Antigen test result that’s the one to be concerned about.
I’ve read that nuts and EBV aren’t a great combo because nuts have high arginine values (this was discussed elsewhere in this comment thread) but I’ve not given them up, and take l-Lysine to balance my arginine, as well as boost my immune system.
Good luck with your PCP tomorrow!!
Kristi says
Thank you! Yes, you are right, I am definitely an HSP and empath. I haven’t heard of sensory defensive, but I get overwhelmed frequently and easily. I have a hard time sorting out all of the constant energy coming my way and I tend to feel a lot of things I don’t want to be feeling! It’s why I’ve taken to hiding in my room in an attempt to block everything else out and rest. It sure doesn’t take much to knock me down. Getting through medical treatments can be torture and it’s so hard to find anyone that understands it. It’s tough to tell sometimes if what I’m feeling is coming from me or somewhere else too!
My appt went better than expected. She seems to finally understand how ill I am and she set up an MRI to make sure there’s nothing else going on in my head causing all the neuro symptoms especially. Hopefully she and my ND will work well together and I can get on top of all of this soon. I was reading that while antivirals work well for mono, they don’t actually work for reactive EBV due to something about the DNA polymerase isn’t required for reactivated EBV to replicate. Doesn’t sound like there’s much else that can be done other than whole body support so at least I don’t have to worry about taking another medication with awful side effects!
Thanks Laura!
Laura Zera says
Glad to hear you’re feeling like your support team is in your corner. And re: antivirals — the Dr. Rawls link that N. posted in her comment thread last week also says the same thing.
It’s really interesting to me that the HSP/empath factor keeps coming up. What is that about?! I’m going to try and find more written about this, to see if there are any links.
Take care, Kristi!
Kristi says
I wonder if our immune systems just take more of a beating than most making us susceptible to a lot more ailments. We know that humans emit some kind of energy so one theory of mine is that it’s possible that most people’s energy constantly works it way outward, working as a sort of’shield’ which protects them from everyone else’s energy. HSP’s feel a lot more coming in than others do so we likely don’t have as much of a ‘shield’ protecting us from being bombarded by all the other energy coming at us all of the time which puts a lot more constant stress on our bodies. We all know what stress does to people so it makes sense that we would get sick more often, especially during times when we are overworked or exhausted. HSP’s need a lot more down time to relax and recharge than most because there is just so much coming at us all of the time. Just a theory of mine, but it sure does make a lot of sense huh?
Laura Zera says
It makes a ton of sense. And something to consider whenever I’m feeling guilty about the amount of time I devote to self-care, and sometimes even “hibernation.”
N Parno says
I have had RA for 15 years. I had a bad flare in 2015 after a doc prescribed a steroid for sinus congestion. (Note: Steroids in people with RA can/will cause EBV to gain ground in the body – lets it activate – because immune system cannot fight it as well.) Within a week, I had a very bad flu where I was in bed with extreme weakness and no appetite for nearly 2 weeks followed by a few more weeks of no appetite and weakness. I didn’t go to the doctor, but now after my research, feel that I had EBV and possibly mono. (I believe I may have had it in 1987 in high school as well, but as often is the case, it was misdiagnosed as the flu.)
So in 2015, due to the flare, my rheumatologist wanted me to go on a higher level med, but I don’t do well on meds; if there is a side effect, I will get it. So to deal with it, I found a Naturopath. She had me go gluten-free, dairy-free, and sugar-free. This got me out of my flare and helped me feel much better overall.
But I knew there was still something going on because I still had a bit of swelling in my hands and some food sensitivities. I stumbled upon Dr. Amy Myers book The Autoimmune Solution, did her 6-week online program, and saw immediate results. No more hand swelling and no water retention in my fingers, energy increase, etc. I quickly learned that The Myers Way is the same as the Paleo Autoimmune Protocol (AIP) and have been faithful to it for 9 months now.
However, I still had food sensitivities so I knew my gut had not fully healed so I needed help from a doctor. I found an MD who is also a Functional Medicine Practitioner who is now helping me navigate things and get the tests I need/want. So, of course, EBV was a big one. (I also found out the SIBO is likely the cause of the food sensitivities and I’m working on that now). But here are my EBV numbers…
(1) EBV Early Antigen D AB (IgG) 24.80
(2) EBV Viral Capsid AG (VCA) AB (IgM) <36
(3) EBV Viral Capsid AG (VCA) AB (IgG) 558.00
(4) EBV Nuclear AG (EBNA) AB (IgG) 59.10
This is what I have learned about these numbers (I will reference the number before the test rather than spelling them all out 🙂
(1) These may arise during acute infection and may persist, go away, or recur. In 20% of people, it can take several years for these antibodies to decline. I believe I had EBV/mono in 2015 so this number although slightly elevated is likely not a concern.
(2) My number is in range. It is not a new/acute exposure. Indicates EBV is not active.
(3)These are indicative of previous exposure. They develop immediately and persist for life.
(4) These develop 3-4 weeks into the illness (EBV) and persist for life.
Another note: T cells in RA patients don't fight EBV well therefore RA patients a higher viral load than healthy people.
In light of these numbers, my MD/FMP wanted to treat with Monolaurin, l-Lysine, Biotics UltraVir-X, LRE, and Oliverex. I began taking these but had a gut feeling (thought) that I didn't need them. I researched and found that these are used to treat "active" EBV, but my (2) lab result indicates mine is not active. I found a natural doctor in LA who specializes in EBV and had a phone consult, providing my lab results and asking if I should treat. She said no. I also took each of these products into my chiropractor and had him muscle test me; my body responded with no (don't need them). So I'm not taking them.
I am going to continue to research, ask questions, etc. especially about my (3) lab result since it is so high. But for now, it's my understanding that EBV is under control in my body – my immune system is doing a good job of keeping it inactive. I will ask my doctor to retest me in mid-August (6 months post my first tests) as I'm curious if my numbers will change … perhaps the AIP lifestyle will make a difference in those numbers as it has with my overall health and well-being.
Any thoughts?
Laura Zera says
Hello! Thank you for sharing all of this. Ahhhh, the definitions of the test results and how they’re interpreted by NDs, MDs and other practitioners is an ongoing part of the EBV discussion (Kristi, who commented just before you, has questions about exactly that, in fact). And who is right? Who to believe? This is what’s frustrating. See, my ND (who is a Lyme specialist, and pretty well versed in EBV) says that the #1 (from your results) would indicate an active infection if it’s above range. And from her and others, I’ve heard that #2 will pretty much always be in range and indicate a past infection because most of us are first exposed to EBV as teenagers, either developing full-blown mono or a lighter batch of flu-like symptoms. So by that reasoning, EBV is always an old infection, but it can become reactivated, coming out of dormancy or “attaching” in a new place years after the initial infection. And #3 and #4, like you said, could be high forever, or take years to come down, according to the information I’ve received.
Did the ND in LA say “no” to treating it because of your #2 result, or based on your #1 result?
I was also muscle tested recently, and my body said “yes” to Vitamin C, Lauricidin (monolaurin) and L-lysine, as well as another virus homeopathic. (It said “no” to the B vitamins I was taking, which bummed me out!)
N Parno says
Hi Laura,
The doctor in LA is Dr. Anju Mathur. She is an MD who practices alternative (holistic and integrative medicine). The “no” to treatment was in response to all of my labs regarding EBV as well as that I am symptom-free. She has great information on her website
http://www.angellongevity.com/about-dr-anju-mathur/
Among other things, she provides information about Ultraviolet Blood Irradiation (UBI) which I believe is what was being discussed in earlier comments as well as Phospholipid Exchange Therapy. So that might be of interest to people following your blog.
Below is another link to the most thorough information I have found regarding the lab results of EBV testing. It talks about each of the tests and then what they mean as a complete set.
https://www.labtestsonline.org/tests/epstein-barr-virus-ebv-antibody-tests
Anyone checking it out will notice the myriad of resources used to compile this info. So I was quite happy to find it and have someone else do a bit of the research 🙂
The combination of this information, Dr. Mathur’s response, and muscle testing leads me to believe I do not have active EBV. It also seems my one high number (3) will likely just stay really high. But I am curious to see if over time, it will go down as my inflammation continues to go down. My other labs (HS CRP, Interleukin 8, etc.) indicate the inflammation in my body continues to decrease month after month since going strict AIP (the diet and lifestyle).
Hope this is helpful to many!
N
Laura Zera says
Hi N., thanks for your follow-up and great resources. It’s interesting to me that in the lab test definitions, it says that if IgM is negative and the other three are positive, it “may” indicate reactivation of virus.
Again, really appreciate you adding this info, and wishing you continued improvement in your health!
N Parno says
Here is one more excellent article by Dr. Bill Rawls that is all about EBV and chronic illness
https://rawlsmd.com/health-articles/epstein-barr-virus-a-key-player-in-chronic-illness
Olivia Conti says
I am curious as to what type of doctor you went to for the antiviral med. I can’t seem to get any doctor to prescribe anything for me, and I see both a functional medicine practitioner and a primary care doctor.
Laura Zera says
Hi Olivia, it was my ND (naturopath) who prescribed the Valtrex for me.
Jenifer says
Hi all,
My story is already detailed in the comments. But I’m curious how many of you have chronically ACTIVE EBV? I’ve only had two tests for EBV. The first was in 2014 when I was sick with hep E (following a stint of living in South Sudan. Fecal oral, similar to A but a bit nastier). Then again in March 2018, a few month ago where my ND randomly tested for it after I said I was tired all the time. Both times, all four levels were positive. Does this mean I have CAEBV? If you google this, the fatality rate is very high and they state that it is very rare in the US and Europe.
No providers are taking my concerns seriously at this point. I’m scared. Very scare. Google hasn’t been my friend lately….
Are any of you in the same situation with regards to your active EBV and latent EBV levels?
I realize stress is a key factor. Trying to get my stress down when google tells me I might die and no doc can explain this to me is pretty tough. Thoughts??
Apologies for the pretty depressing post!! My other posts were a bit more optimistic.
Jenifer says
Also. I just read this:
https://forums.phoenixrising.me/index.php?threads/positive-ebv-vca-igm-for-at-least-six-months-false-positive.57145/
Has anyone had the swab done? Maybe I am having a false pos due to the hep E??
I’m really stumped. Besides joint aches and fatigue…. all my lab work shows that I’m healthy. I even recovered from the hep e faster than my colleagues did.
Laura Zera says
Hi Jenifer,
I don’t know much at all about the scenario of having four positive results, and/or having CAEBV (as opposed to a reactivation). This page (that was a resource provided by a different poster) doesn’t even offer the test result interpretation for four positives: https://labtestsonline.org/tests/epstein-barr-virus-ebv-antibody-tests. So I’m stumped, too. Have you thought about asking some questions on the Phoenix Rising forum that you linked to here?
Sorry you’re feeling the stress of this. I’m not sure where you’re physically located, but can you find an ND in your vicinity who specializes in EBV? Or at least one who is well versed in Lyme (as there’s some crossover of knowledge with that, so if they advertise themselves as being knowledgeable in Lyme, they likely have a good handle on EBV, too)?
Rebecca says
Can you give us an update? I am suffering badly right now and just started immune boosting supplements, Valtrex, and am doing my best to follow Anthony Williams diet protocol in Thyroid Healing .
Laura Zera says
Hi Rebecca, I’m so sorry that you’re not feeling good. Something I’ve read recently (and I wish I could remember where, but I think it’s in the one of the articles that another poster here has given a link to) is that Valtrex and other anti-viral meds don’t work on EBV. And to note, I took Valtrex for two years and it didn’t do a thing for my EBV. I think the supplements route is good, as well as the diet protocol. Have you added monolaurin/Lauricidin in?
As for me, I’m contemplating waiting a few more months until I retest, as I want to give the diet protocol a good chance, and I’m also trying some new supplements, like cat’s claw and lemon balm.
Wishing you well in the coming days and months.
Anna L. says
I was also recently diagnosed with chronic ebv. I feel extremely lucky that there is a naturopathic doctor in my small town in Oregon who actually has this and has been able to get her own chronic ebv into submission. I just started her “protocol” last week and am nervous, excited, pessimistic, optimistic… all at the same time.
The connection to cancer for chronic EBV scares me a lot and I think I am working on how to process that right now. Does this mean I am destined to have some sort of lymphoma as they run in my family? I have so rarely heard of any success stories with EBV… that also scares me.
The protocol from my doctor involves the following in various doses for the course of a year, and then a few of the following for life to keep EBV in submissions:
valocylcovir – for 1 yr
monolaurin
oivir,
l-lysine (for life),
elderberry syrup
multivitamin containing methylated b-vitamins, zinc selenium
mushroom SAP
Along with:
Probiotic
magnesium
Recommended foods:
wild blueberries, celery, sprouts, asparagus, spinach, cilantro, parsley, coconut oil, garlic, ginger, raspberries, lettus, papayas, apricots, pomegranates, grapefruit, kale, sweet potatoes, cucumber, fennel.
and then as much of an anti-inflammatory diet as i can make myself do.
Will let you all know how I make out. A little overwhelmed by it all right now
Jenifer says
Hi Anna! Welcome to the group.
Where are you from in Oregon? I’m living in Seattle now, but my EBV journey started in Oregon. I’m from Portland originally.
Do you know if you or your ND have 3 of the 4 tests showing as positive? Or all 4? I am one of the rare people with all 4 showing as positive, and i’m trying to find more people like me.
Are you near Portland?
Jenifer
Laura Zera says
Jenifer, I’m in Seattle, too!
Have you had any luck getting the ear of an EBV expert anywhere in the country?
Jenifer says
Oh wow!! Small world!
I found a nutritionist in Seattle who specializes in EBV. I had a phone consult with her yesterday (cost me $197 out of pocket for a 45 min meeting!). She had some impressive things to say and seems to really understand the virus. However, in the end, her treatment is a 4-month long plan and would cost $6K out of pocket (up front). If I paid on a payment plan, it would be around $6,500 for the 4 months. There is no guarantee that the treatment would be successful. The treatment would be meal plan, supplements and her tracking me through the process. But again, if my levels dont go down or i dont feel better…. then she said it would mean that I have a co-infection. I’m still not sure what I’m going to do, but $6k is a lot.
I found a MD expert at Johns Hopkins, but i havent called him yet. I’ve been speaking with Doug from this chat forum since we have the same thing (all 4 tests are high positive (the IGM, Early Ant, and both IGG). We have both done a LOT of research online and havent come up with anything concrete. Doug found one article that references a FIFTH antibody test (HET IgM). If Neg, it looks like maybe our bodies just report out high antibody levels but we dont have an active infection.
In summary….it seems like this is an understudies virus that deserves a lot more attention from the medical community since it affects so many of us.
Who ND or MD are you seeing in Seattle? I’m going to the Inst of Complementary Medicine. I’m heading to Portland tomorrow for a second opinion. I’m also going to call Fred Hutch since it looks like they are doing research on EBV (specifically it’s links to Cancer….).
Anna L. says
That does seem like a lot of money. I’m not 100% sure of how much my full protocol will cost as my insurance covers the visits as she is a fully certified MD. I live in Klamath Falls, OR, and my doctor’s name is Dr. Laura Blevins, if you are interested. While having a doctor to physically see would be great, just having a doctor who understands what I am going through and has a solution that has worked for others is quite uplifting.
Her website is:
http://www.wholesomefamilymedicine.com/
I’d be curious what she has to say about all four tests being positive. I wonder if it has to do with the point in time in which you took your test. It sounds like the IgM comes back positive early within an active infection. Have you had the test done multiple times and get the same result?
I’m also curious what the Johns Hopkins people have to say. My parents encouraged me to reach out to the Mayo clinic, but am kind of waiting to see how all of this goes and also read as much as I can first.
Regarding the Monolaurin, the doctor had a brand called “Ecological Formulas”. I’m not sure if there is a difference between that and Lauricin, but I will ask at the next appointment. I made another one in a couple of months just to ask a bunch of questions!
I think I have now accepted the situation and am determined to give resolving this thing 110%. It’s kind of a struggle to wrap your head around.
I am now on my 5th day of the treatment protocol. Felt a little nauseous first few days. Glands seem to be extra swollen. I kind of felt like I had a little more energy yesterday and that I’ve slept a little better last couple of nights. But… as you all have said, sounds like this is a journey. From most of the literature I have read, it sounds like it’s typically at least 30 days before you should really start experiencing positive results.
Thanks for all of the comments everyone- it’s really helpful to hear what you all are finding out as nothing about any of this is concrete and proven…
Best!
Anna
Laura Zera says
Whoa, Jenifer, that is expensive. Have you read Anthony William’s Thyroid Healing book? He points to EBV as the root of adrenal issues, and there’s a lot about food and recipes in there.
In Seattle, I’m seeing Dr. Jena Peterson near Green Lake. http://fullcirclemedicineseattle.com/about-us/dr-jena-peterson-nd/. She was my husband’s Lyme disease doctor first, and then she found my EBV when I was tested for Lyme.
The medical community seem to believe that IgM is the only test result worth any salt, and most people are negative on that one because it indicates a past infection (which EBV is, always, old/reactivated, and again, you and Doug with the four positives are unusual). But that’s the reason an MD gave to me as to why they don’t study it or treat it. I’ve given up talking to the MDs around here about it, though I’d love to find one who treats it. Currently, on my Kaiser plan, I’m out of pocket paying for the ND.
Laura Zera says
Hi Anna, *Sigh.* We are a rather inauspicious group, aren’t we? Though I’m not sure if it’s that there aren’t any success stories, or we haven’t heard them, or people aren’t sticking to the protocols/diets long enough to knock it down. It’s not a one-month kind of thing, and people seem to have limits to their diligence — at least I do! I’ve waxed and waned a bit on the diet and supplements over the past two years–and also didn’t know much about the diet part until this year — but have been trying harder this year. So persistence. We need to persist. I’m drinking my spinach-spirulina-wild barley grass juice powder-wild blueberry smoothie as I type this.
Your protocol looks ace, and I’ll add my favorite thing to mention: maybe get Lauricidin for your monolaurin. I think it’s a good one.
Good luck! Send word if you can!
Mike Vittori says
Hi Laura,
After suffering from Chronic Fatigue for years I asked my doctor to test me for reactivated Epstein-Barr. I had Infectious Mononucleosis as a teenager, and never really seemed to get my vitality back after that. My Early Antigen was 29.1, Nuclear Antigen was 109.0, and VCA IgG was >600. This appears to meet the requirements for reacitvated Epstein-Barr doesn’t it? thanks Mike Vittori
Laura Zera says
It does, Mike, according to what I’ve learned, and my ND’s translation of test results. Of course, you’ll want to talk to your own provider — if your doctor doesn’t “speak” Epstein-Barr, then I’d seek an additional/alternative provider. Good luck! And hope you get some answers and support.
Mike Vittori says
Thanks for your quick response Laura, have a great week !!
L Murray says
Hi – I’m late to the party but I have learned really quick to not linger too long on the net regarding EBV – totally depresses me. I’m an ultra-runner or was – who has green-shaked every day for years, eats farm to table, tons of vegies, especially greens, never smoked, can’t add anymore exercise to the plate, haven’t had a soda in 25 years, meditate, lift weights, yoga – at the end of the day, I should have been a picture of health but now, I can walk an hour, not run, can’t get thru a workout, have to have a couch nearby cause I have to get horizontal a lot. I am accustom to fighting thru pain and being uncomfortable in my training….I guess because I know there is a nice finish line. I have to tell you, from what I understand about this little Evil, there isn’t a finish line! Just a life of okay and not okay days, days full of supplements and stupid food protocols. I can’t wrap my head around all of this. First of all, I don’t totally trust the Integrative Docs I’m seeing – not that I got anywhere with my regular Doc – Oh my Lord, she had me getting everything from my colon, to my heart, to my head, you name it checked out. I finally got mad enough and started doing my homework – I had narrowed down to a virus – either EBV or some type of Thyroid/Adrenal thing. This is my question – can someone please read my chart and tell me what they think: EBV Capsid Ab.IgM 150.0 – EBV Capsid Ab.IgG >600.0 – EBV Nuclear Ab.IgG >600.0. This Doc put me on Valacyclovir and some various supplements….I was doing okay…able to function about 40% till one month in – then the fatigue hit heavy & hard….along with some more evil party goers. Is this a type of herxing? Will this stop? Is there a time-line? Does anyone have a success story? I have one other ultra-girl I spoke with about 6 weeks ago – athletes don’t really like to share the yucky stuff – she just said she would not allow herself to stop moving and sounds like she just took natural supplements, no anti-virals. Any words of wisdom? Thank you for reading and your time.
Laura Zera says
And what a party it is! A whole bunch of really tired people who likely go to bed by 9 pm. But welcome! And sorry you’ve got the virus.
First thing, I’m wondering why your test results don’t seem to include this one: EBV Early Antigen Ab, IgG1 – Range is 0.0-8.9 U/ml. The early antigen is the one my doc said was the most important indicator of whether your body is still actively producing antibodies.
Second thing, you tested positive on the IgM. If you were also to turn out to test positive on the test I listed above, then you would be one of few people who have commented here who have all four tests as positive. And what that means, no one really knows, but if you scroll up in the comments, you’ll see that Jenifer is working on figuring it out.
Third thing, I read somewhere recently that antivirals don’t actually work on EBV. I took Valacyclovir for two years and it did nothing. We even doubled my dose. I can’t seem to find the article now, only things that say the Valacyclovir might be working on the EBV, or it might be working on CFS, and no one is sure which.
Fourth, getting into supplements, have you found some or had some recommended? My top picks would by lysine and monolaurin (especially Lauricidin). That said, I’m delaying my retesting for a bit, and so I don’t know how much these two have helped me personally. I’m almost scared to get retested, to be honest, because if my numbers haven’t moved after three years of various protocols, I will stomp my feet like a baby.
Good luck, keep us posted if you have improvements or learn anything new and have a minute to come back.
Kelli says
I’m glad you have been diagnosed! My youngest son was diagnosed with Epstein at age 8….He is now 31 and has all the symptoms of a reactivation….Doctors don’t want to test for it…..Now he is having what he calls my brain hurts! I am getting very concerned! We buried his little sister last year at age 27! His symptoms started when she was on life support…..
Laura Zera says
Kelli, I’m so sorry. I wish your son a solid recovery, and strength to you in what must be a difficult time. xo
L says
Hi Laura – Sorry I left the most important one out – EBV Early Ab.IgG was stated >150.0; Yes, I’m about to phase out on my Valacyclovir (I’m assuming I was put on this because EBV is a type of herpes virus & this seems to be the candy for it) and just up the Monolaurin. I’m on a mega amounts of B12 Methtl to help with my energy, CytoQuel (I’m guessing for inflammation), Tranfer Factor PlasMyc – I gave out of this and found a similar product at my health food store: IP-6, Quercetin with Bromelain, Extra C, this stuff called Restore for my gut, Mucosagen for my gut, D-Risbose & Elderberry Syrup-my own addition. About 1.5 years ago my gut started giving me issues – they said I had GERD with some type of hernia(here again, I was already eating correctly so they made no dietary changes)….you know, now I wonder, which came first, the chicken or the egg because I do know the gut & EBV are friend-enemies. When the poo hit the fan and I had my Blood Work, I was told my Iron , Estrogen & BP was low. I had struggled in the past with low D which both me & my Doc were like ‘really’ – as much time as I spend outdoors! So all these little things popped up strangely and instead of just treating each issue, I knew enough to know I had to go after the head-honcho – the root problem and here I am. All the stuff that was going on can be brought back to the EBV. I’ll have some more blood work done in a couple of weeks – it will be interesting to see. I remember the first Integrative Doc told me I should expect the worst for 2.5-3 months and then I should start really telling a difference….we’ll see. You know, you just expect to have syndromes & ailments when you get older….not now!?!
Laura Zera says
Interesting, so you’ve got a “positive” on all four then. That’s not super common, it seems.
Your protocol seems really good. As for the chicken and egg thing, geez, that’s the million-dollar questions. I kind of think it’s more of a circle — a weakened immune system allows EBV to wake up, which then further weakens the immune system so that other stuff happens too, and then that other stuff creates a friendly hotel for the EBV to stay long term.
You were smart to go looking for the root cause of some otherwise “random” abnormalities. I also had low BP for a couple of years, and now I wonder if it was related to EBV. I’d be at 88/56 with a resting pulse of 45 sometimes. Now I’m up around 100/70, so still low, but much better. But medical professionals never pay much attention to low BP, I found. And I just got used to having black-out moments when I stood up and seeing stars when I blew my nose. 😀
Hope you get through the next few months without feeling too crappy while the toxins are dying off, and I hope you’ll let us know how you’re doing later!
Anna L. says
Hi everyone-
Thought I would give an update on how things are going as I am actually feeling WAY better and I have enjoyed hearing of people experiencing success with this annoying virus.
I saw a naturopathic doctor for the first time 6/15/2018 after my regular doctor did an EBV panel and recommended I see the naturopathic dr.
I am actually really surprised at how much better I am feeling. I have a lot more energy and less brain fog. I facetimed with my parents yesterday and they commented that they thought my face looked so much brighter and “much thinner”. That’s interesting because I haven’t lost any weight… but I think I was just kind of swollen all over.
I mentioned my protocol given to me by my doctor in my first post on 6/18/2018 if anyone is interested. One other item I forgot to mention is that she said to completely eliminate nuts and chocolate from my diet as they are high in arginine. So, apparently lysine is an amino acid which directly competes against arginine (another amino acid) to keep the herpes virus from replicating.
I also have modified my diet based on a few different books to minimize inflammation in general and increase “gut” health, as many have mentioned there seems to be correlation between inflammation/gut health and reactivated EBV.
I’ve been kind of using “The Autoimmune Solution” by Amy Myers as a guideline for my diet… but it is really strict and I’ve been doing what I can within moderation. I’ve also been using recipes from “Eat Right for your type (Blood type B)” by Dr. Peter J. D’Adamo and “The Anti-In flammatory Diet Cookbook” by Madeline Given.
I think the biggest difference is that I find myself thinking about what I want to do as opposed to how soon I can reasonably declare it bed time.
If anyone wants more info on the specific supplement brands, dosages, etc., just let me know. My direct email is anna@mcsl.com.
Good luck!!!
Laura Zera says
Hi Anna, thank you for the update, and yay, good news! (And for readers who want to find Anna’s first post, this is the link: https://laurazera.com/2016/01/epstein-barr-reactivation/#comment-278377).
I have two questions about your protocol:
– is NFH the brand of mushroom SAP?
– when you wrote “oivir,” was that a typo? I couldn’t find anything on that.
If you’ve been able to cut nuts and chocolate, you’ve done well! I’ve been taking a lot of l-lysine to balance out the arginine in those two items. I thought it interesting that your doc suggested l-lysine for life. I guess it becomes preventative at some point?
Anna L. says
Hi!
Yes, NFH is the brand of the “Mushroom Complex SAP”. And you were right about the typo, too! It’s OLIVIR 15 by Davinci Laboratories of Vermont. Says it is an olive leaf extract supplement.
Jill says
I just got blood tests back similar to yours. My levels are over 600 on the last 2 tests and only 24 on the second test. The first one is 36 I haven’t talked to my doctor yet so I’m not sure about anything. I just know I want to feel better. I have a friend who actually works with the medical medium and her health has greatly improved. So I am gonna look at this further.
Laura Zera says
Hi Jill, welcome, and sorry you’re part of this club! Hope you get some good info from both your doctor and other sources — cool that your friend is working with Anthony William! — and hope this long string of comments is helpful to you as well. Good luck! Feel free to update us if you’ve got any news to share. xo
Stacy L says
Jill,
I have a fantastic Naturopath that I work with, and I’ve had a lot of success with the Vitamin C/Myers Coctail infusions. She said the Medical Medium info is great, but the best time to work on that part of it is when you get the virus under control. When I started feeling better, I started working really hard on the diet end of things. We’d already been working on the supplements.
Hope that’s helpful!
Emily says
What homeopathic immune boost did you take? I’m taking Biocidin for my EBV but also read that Lomatium is effective. Have you had any experience with Valacyclovir. Izabella Wentz suggests that for the more Westen medicine route.
Laura Zera says
Hi Emily, I’ve taken a few different things over time. I used Lauricidin for a few months this year, and that’s one (monolaurin) that is recommended a lot, it seems, judging by the comments in this thread. I’m still taking L-lysine. Also using activated charcoal to draw out toxins. I previously used an IgG powder for immune system rebuilding, but I can’t find the brand right now. I used Valacyclovir for two years and it did nothing for me. Good luck!
JESSICA says
Can someone please explain this results to me? I have been awful tired and swollen nodes. My doctor doesnt seem to know much about ebv.
Igm <36
Igg 336.8
Nuclear 95.6
Laura Zera says
Hi Jessica, sorry to hear that you’re not feeling well! My recommendation is to read through the earlier comments on this post — there are previous explanations of the test numbers, plus a ton of other good information.
Aimee Phillips says
Ok, so what happened?
Laura Zera says
Hi Aimee, is your question directed at me, or one of the other commenters? And could you please clarify what you’re asking? I’m not clear. Thanks.
Mary Sue says
Hi Laura
I guess I’m in the “club”if I’m understanding my results correctly, although my follow up appt with my new Doctor is tomorrow so will see what she says.
I recently tested what I believe his strong positive on the full panel for EBV
EarlyAnigen IGG was >150
VCA IGM was 750
EBNA was 593
Hopefully she will guide me on the right path! & will get some answers as I also tested Positive for Lyme with the Lyme Multiplex PCR last August.
Because I’ve researched some since I saw my lab results on line, I just wanted to pass on a Functinal Medicine Doctors You Tube Information on EBV that I found very informative especially for those that need an explanation about testing, interpretation of results & treatment with supplements……… it’s a 4 part series that can be found on attunemed.com or on you tube.
Mary Sue
Mary Sue says
Laura
Oops…..I posted incorrect Results
Early Antigen was>150
VCA IGM was 750
EBNA IGG was 530
Mary Sue says
Laura my 2nd post is incorrect too & I know I entered the 4 results & for some reason it is wrong again…..the IGM was <36 & the other 3 were definitely positive
Laura Zera says
Hi Mary Sue, thank you for joining our conversation, and I’m sorry that you’ve had trouble with the numbers sticking when the comment posts! But regardless, you have EBV, and so, yeah, you’re in the club, unfortunately. And also Lyme. I will be interested to see if your doctor wants to focus on one before the other, e.g., Lyme before EBV. I hope she turns out to be a good resource and support for you. Thanks so much for sharing the info about the 4-part video series. I found it on YouTube so I’ll just share a link here so others can easily access it, too, and I plan to watch them later — they look like they’re in nice, digestible four-minute segments: https://www.youtube.com/watch?v=oDWP06Ikn4M
Good luck tomorrow!
Mary Sue says
Hi Laura
Appointment went well & feel fortunate for finding this group of Doctors who understand all this & work together when there are issues that they may not have a total grip on……clearly they love to work together & as my Doctor I saw today, “ its like getting a 2 for1”.
Being able to spend a whole hour with a Doctor is wonderful!
Although my blood work for the most part was fairly good, she is starting with getting the “gut” in order and see how I progress before going full blast on the Lyme…..she is concerned more about the Chronic EBV .
She’s prescribed some supplements & to see their health coach and has even prescribed LDN for my pain.
Thanks for your support
Mary Sue
Laura Zera says
That’s great, Mary Sue. It really does sound like a good team. I’d never heard of LDN before. I hope it helps you.
Since you’re starting with gut health, I’ll just add that the Anthony William books (the one listed in this post and the thyroid healing one) both have good information on EBV-friendly foods.
Mike S says
I just got my results and my numbers are nearly identical to yours. The lab actually called me as an “alert” popped up on their system indicating it they needed to alert me immediately and recommended I see a doctor ASAP. They offered to call them directly and fax a copy of the results. The numbers are a little worse than a year ago. Not a single doctor would agree I had a reactivation, including my hemotologist.
I have the typical symptoms including fatigue/tiredness, swollen lymph nodes, feverish, joint pain and headaches. Been having these for over a year now.
Got a call into my PCP and will follow up tomorrow. I also sent Dr Cohen an email at the NIH asking for advice and steps I might take.
Guess we we will see what happens. Just another thing to add to the list of my chronic cervical pain and constant PVCs. I’ve already had, and fought off, prostate cancer. But I refuse to feel bad as long as I wake up every morning.
Jenifer says
Which were you positive for? All four? or just the three (all but the IgM)?
Mike S says
IgM – Negative (less than 36)
EA IgG – Positive (28.7)
VCA IgG – Positive (308)
EBNA IgG – Positive (169)
Also, Dr. Cohen emailed me at 11pm last night. He stated CAEBV is indicated by an elevated level of EBV DNA by PCR in the blood and that I should get this test. He also stated he would be glad consult with my doctor if it came back elevated. He even mentioned their may be an opportunity to meet with him at NIH in Bethesda… but that is getting ahead of things.
Laura Zera says
Hey Mike (and Jenifer!), I’m wondering why no one (of practitioners) seems to go to the PCR test first? Is it due to cost, or due to difference in opinion between the official NIH stance and in-field practitioners, especially NDs? I know you likely can’t answer that, but if you have any ideas, throw them out there! This is all very interesting to me. And also, good luck with your PCP.
Mike S says
I think it is two things. 1) Based on my experience, and the reading of others, most doctors have only heard of it and struggle to believe it is real or is happening to one of their patients, 2) at walkinlabs the test is $340 vs $141 for the 4 antibody EBV test we all took and doctors are conditioned not to push expensive tests. Personally I would like to be told about other tests and given the option to self pay.
My first PCP actually tested me for it then dismissed it as an anomaly that the test just showed I had EBV in the past. My hematologist did not even want to talk about it and summarily dismissed any discussion about it. He actually tossed my blood test results back to me when I asked him to explain the anomalies. None of them could explain my symptoms.
But I am relentless to the point of arrogance when it comes to my health. My feeling is that doctors are a service I pay for and either they help me or get brushed aside.
Mike S says
As a quick follow up after my PCP visit. She was fantastic. She was well researched on EBV, CAEBV and the DNA PCR test. She walked through the various antibodies and explained how they might be elevated. She took blood and ordered the DNA test. We’ll see what comes back and take it from there. But I do feel REAL lucky to have a primary doctor that understands this issue so well.
Laura Zera says
Hey Mike, good news on your PCP visit! My ND is away, so her sub replied to my question about the PCR test with this info, which is interesting so I wanted to share: “DNA PCR is certainly more conclusive because you are detecting how much of the EBV DNA is in the blood. However, the challenge with this type of testing is that the EBV DNA has to be in the blood. EBV likes to hide in different places in the body, such as inside nerves. There isn’t any blood in nerve cells, so with a nervous system EBV infection, you are relying on the body to push enough of the EBV DNA out of the nerves and into the lymphatics which will transport this DNA to the blood stream. The PCR is a fine test and we use it for other things, just not usually this.”
Teresa says
Mike, hi, I share your frustration and determination to find an answer. Do you have any follow up? I posted how I am proceeding on some of my posts.
Tessa says
Mike hi, did you get the results of your PCR test? I am wondering if I should get tested. If one testes positive is there a treatment?
Lindsay A says
I JUST got my results back and I’m so glad to find your site. I had mono 20 years ago. Reading through the comments I’m checking so many of the same boxes. Sinus infections, always exhausted, muscle fatigue, brain fog, (more recently depression/anxiety). Has anyone had hair thinning/hair loss? I noticed these symptoms after having my second child and everyone just told me it was motherhood/hormones. My thyroid tests always came back normal. I don’t think it ever got better but I had two more children since then. Now I’m a complete wreck! I think my body has reached its limits. I went to my NP to say please fix me and she ran a ton of tests. My hormones are messed up (extremely low progesterone) but look at these numbers:
EBV Ab VCA, IgM 600.0 H
I’m glad to finally have answers but my gosh I’m upset no one found this sooner. I’m terrified of the cancer link I read about here. My NP has a treatment plan that consists of Monolaurin, Vitamin A, Antiviral herbs (Siberian ginseng & licorice), zinc, and multi vitamin. Along with diet changes (eliminating sugar). I’ll come back and update once I’ve started!
Lindsay A says
Not sure why my #s didn’t all post.
EBV Ab VCA IgM 600
Laura Zera says
I don’t know why, either, but it’s super frustrating and you’re not the first person to have this problem! It’s very weird. They’re just numbers! But I guess we can just assume that they’re way high. Are you high on all four, or three? There seem to be very few people who test high for all four, which is another interesting facet of this all.
Elizabeth Ristich says
My EBV numbers were off the charts last year for all 4 numbers when I came in for debilitating fatigue. He dx me with ME/CFS.
Since then I’ve been doing a lot of research and keeping up with the latest findings.
My understanding is that EBV basically rewrites your DNA. The good news is that with the latest advances in genetics and computing, there seems to be new discoveries daily.
Good luck!
https://www.healthrising.org/blog/2018/09/13/ivig-chronic-fatigue-syndrome-pots-fibromyalgia/
http://simmaronresearch.com/2018/04/autoimmune-virus-groundbreaking-ebv-finding-help-explain-mecfs/
Laura Zera says
Hi Elizabeth, I’ve finally just gone and read the articles that you posted links to. Thanks for sharing those, they’re very interesting. My reaction to the first one was, “whoa, IVIG treatment is heavy duty,” and to the second, “whoa, this is why EBV is such a sneaky bugger.”
I hope you’re finding a treatment for yourself that’s helping you to feel better. Would love to hear about it if you do!
Laura Zera says
Hey Lindsay, glad you found us, but sorry you’re here! Good luck, I hope you start feeling better soon. One thing about monolaurin — I keep recommending Lauricidin to people because it’s the original monolaurin and I felt a difference with it that I didn’t feel taking other monolaurin. Lauricidin is super potent. You literally need to start with one pellet and then work your way up to a scoop.
Teresa says
Hi, My testing reveals the following
EBV EA IgG 66.7 +
EBV NA IgG >600
EBV NA IgM neg
EBV Viral Capsid Ag IgM <36 negative
I will get tested for EBV VCA IgG
I have found it difficult to figure out what this means. On the CDC website is says 20% of healthy individuals test postive for EBV EA IgG.
https://www.cdc.gov/epstein-barr/laboratory-testing.html
But it seems like they are talking about this test being positive in the setting of primary EBV
I found Dr Balfour's info helpful. He is a pathologist but is looking into a vaccine for EBV. Here is the link. Have other people seen this? If so have you found any of his regimens helpful?
https://www.pathology.umn.edu/research/epstein-barr-virus-ebv-diseases-research-program
Thank you, Teresa
Laura Zera says
Hey Teresa, thanks for sharing these links. What I want to know is what is that woman holding in top photo on The Mono Project’s website, and why does the guy behind her look like a nightclub bouncer dressed up in a lab coat? Joking aside, there’s some good info in the pdfs that are linked to that page, namely the herbal supplements. Also, the diet info. I think diet modification is really key. No eggs, for sure. The foods and herbs that Anthony William lists at the end of his book on thryoid healing are well worth looking into. I was really stringent about my diet for several months, fell off a bit with the sugar part, especially chocolate and wine, and now am cutting those back again. LOOOOOOTS of vegetables. 🙂
As for your test results, my suggestion is to get a doctor to interpret them for you, but not a straight-up MD because they usually say they don’t think those results mean anything. I’d go to a functional MD or an ND.
Teresa says
Laura, thank you for your response. Yes that photo is weird! Did you notice a change when you went back to eating sugar? Did you notice a change when you stopped again? Have you noticed a change when you eat a lot of vegetables? I am a bit reluctant to make a lot of changes to my diet. I have noticed I feel better when I do restorative yoga.
If seems like Dr Balfour’s recommendation to take valganciclovir us based on this study. https://www.academia.edu/8039590/Use_of_valganciclovir_in_patients_with_elevated_antibody_titers_against_Human_Herpesvirus6_HHV-6_and_Epstein_Barr_Virus_EBV_who_were_experiencing_central_nervous_system_dysfunction_including_long-standing_fatigue
I think these results look promising.
Laura Zera says
Yes, I absolutely feel better when I cut out sugar and eat a lot of veg.
The thing to keep in mind about EBV is that it exists in many different forms/strains, and people will respond differently to treatment protocols (I took an antiviral for two years, and it didn’t do a thing for me). It can take multiple approaches and sometimes years to get EBV knocked down and under control. So really, it’s about finding what will work for you, which, quite honestly, can be exhausting and time consuming, which is why I think it’s important to work with a practitioner or team who will support you through the process.
Teresa says
Laura, thank you again for your support. You have hope and that is nice to hear. I just want to clarify that Valganciclovir (Valcyte) is an anti CMV-cytomegalovirus drug and Valacyclovir (Valtrex) is an anti-herpes drug. Their names are too close together. It is confusing. But they are different drugs. I did listen to a video by the CF/ME Dr Montoya at Stanford and he would do a randomized control trial with the Valganciclovir to really test his original study posted in an earlier post of mine, but he doesn’t have the funding. But his preliminary test is pretty convincing. I would be interested in hearing if people have taken Valganciclovir. Their regimen is 900 mg twice a day for three weeks followed by 900 mg every day for 6 months.
Laura Zera says
Yes, they’re different, and I took Valacyclovir. There might be someone in this thread was using Valganciclovir; you could do a Ctrl-F and search for it on the blog post page.
Teresa says
Hi all. I hope you are well. Does anyone who lives in the San Francisco Bay area want to meetup in person or does anyone remotely want to do a video group call? We could do a group Skype session? I would find it helpful to talk and share our experiences.
Mia says
I live in the SF Bay area – are you still around?
Maria says
Hi Laura! Thanks for this great blog, literally a life-saver.
I just got my blood test results, IgM negative, IgG 690, EBNA 376. So a past infection, and a high antibody count. I came to this site only to realize we should have tested the EA (#2 marker) as well. But I didn’t know about this going into the test. I’m planning on retesting in 6 mo or so, and including the EA. My dr is a conventional dr who I really like. My blood test was otherwise excellent, no issues w blood/thyroid/anything else except a vitamin D deficiency. That’s also been the case for the last two years since I started running these tests to figure out why I always get “colds” and feel under the weather.
My story that might help those with EBV markers and sinus issues: 2016 was a bad year from me, a breakup and my friend died in a fire. Shortly after these events, in January 2017 I came down with a cold that basically never ended. I was sick pretty much every week for 2-3 days up until the end of May. Summer brought some relief. Same thing next winter, Oct 2017 – May 2018. Endless viral infections, congestion, headaches etc. Summer relief. And now we’re in 2018, and once again I was on antibiotics for a month long sinus infection. I feel better today but in the light of this EBV test, it seems like I also have a long way to go.
I think the lowkey EBV and proneness to colds go together, making each other worse. Then the colds turn into sinus infections and I’m sure you know how it goes. EBV is hard to treat, but I did figure out a few things that helped me literally calm down my nose. This is where all the common colds begin, right. So this year I:
1. Did a procedure called balloon sinuplasty which basically breaks lil bones in your nose, opening up the passages. Expensive but I’d say worth it. Not doable without insurance.
2. I never thought I had allerhies, but I did do a skin pick and blood test this year, and I’m allergic to pollen and grasses. My dr said to take antihistamines daily.
3. The allergist also prescribed a nasal spray called Dymista. It’s super expensive but a miracle drug for me. On it for the last 2-3 weeks and I feel like I have my nose back.
4. I was ignoring my lingering colds and frontal headaches, but finally dragged myself to the dr who prescribed abx, and my frontal headaches disappeared.
5. I noticed that I would often wake up in the middle of the night feeling chilly. Desert climate over here. And everytime I had that happen, I would wake up the next morning with sniffles. I’m just extremely sensitive to cold temps. So i started running the heater at night, and I don’t get that anymore. This is a recent lightbulb I have. Drs agree that cold temps don’t cause colds, but they do increase the possibility of inflammation.
SO long story short – get rid of an active bacterial infection and then make sure to take care of your precious nose by bringing down inflammation caused by allergies and long colds/cold temps. neti pot, steaming are cheap. Not everyone can do the procedure I did, but I’d def spend $$ on that spray Dymista.
I’ve become a manic hand-washer, and next I will look into Lysine and Monolaurin to reduce the viral load in my body. It’s just a vicious cycle and I believe it’s important to change the things that can be changed, and not stress too much about those that might not be in our control (i.e. high IGG numbers that might never go down).
Thanks everyone and hang in there!
Laura Zera says
Hi Maria, I’m both glad you found this post, and sorry you need the info!
You’ve made some great progress in figuring out what’s going on with your body. I totally agree about protecting the nose for those who are prone to colds and sinus infections. I use Flonase (hadn’t heard of Dymista before, which is basically Flonase + an antihistamine called Azelastine). I also use a neti pot and saline spray. It all helps.
From what you’ve said, I’m guessing your immune system could use some fortification. There’s lots of ways to do that, so it’s a matter of deciding which route is the one for you. Lysine and Monolaurin are both immunity helpers, but there are many others, too.
Good luck on your next steps and to getting to where you feel “over” the weather!
Angela says
This thread is so interesting! Thank you! It is going to take me a long time to go through it but I am eager to see how everyone else is managing their EBV.
I had a major case of mono when I was 15 and was out of school for over a month. I feel like I never really recovered. This was 1985 and not much was known about the ‘kissing disease’. I had mono repeatedly every 6 months or so…according to the doctors and bloodwork. Then I moved across the country in my early 20s. I went down hard and a new doctor said that it wasn’t mono it was chronic fatigue syndrome. Which was widely dismissed by doctors at the time as a ‘yuppy’ disease and not taken seriously. So I never received very good treatment. I was young and desperate and in 1994, took my last $200 and went to see a naturopath- which was very out of my comfort zone at the time. I received acupuncture and supplements- I believe one had ox bile in it! It gave me a boost to get through the next year. I am now 48 and still struggling with extreme fatigue, muscle/joint pain, adrenal and hormonal issues and chronic migraines. I now test positive for Chronic Acute EBV with every blood test. I have been working with a naturopath for two years. I have tried many supplements and interventions (drinking food grade hydrogen peroxide – 35% 1-10 drops in 8 oz of water daily as the doctors read a study that it helps to stop the reproduction of the EBV? Yea, I did that.) The only treatment so far that has helped has been IV therapy. I was going two to three times a week (very expensive!) and the doctor would fill the bag with many ingredients. My doctor then moved away and I haven’t had treatment in months. I am back to my baseline without the treatments which isn’t good. I start with a new naturopath tomorrow. Fingers crossed that I get some relief soon! Thanks for sharing!
Laura Zera says
Oh my goodness, Angela, you’ve had quite the journey with this virus! I wish you good luck with your new naturopath, and I hope that once you’ve had time to peruse the comments in this post, you’ll find some helpful information. I continue to take what other people write about and share the info with my naturopath, and so it has helped me be more proactive in my treatment. As for the hydrogen peroxide dose, I’ve heard about it for other things, but not as a treatment for fighting EBV. Interesting. I don’t think I’ll try that one! 🙂
Hope you’re on the road back to “your happy health baseline” soon!
Becky says
Hi…thanks so much for this great info! I have had re-activated (chronic) EBV for over a year now…so when I read about stomping your feet like a baby Laura if your bloodwork comes back I laughed because I feel the same-my #’s have yet to budge. The EBV has led to me having an auto-immune disorder known as dysautonomia (basically my respiration, blood pressure, and other things that should be controlled by my automatic nervous system are all messed up)-I am thankful to have found a good neurologist that was able to put a name to all my weird symptoms. My first question is if you know if when EBV is chronic if it’s still contagious? Second, wondering if anyone has had any improvements from using a Bemer mat? Thirdly, any improvement from using an infrared sauna? Lastly, maybe I missed something, but is there any success (complete recovery) stories on here and if yes, what was the thing that helped the most? Also, I wanted to add something I didn’t see on here (maybe I simply missed it), but a tx that is supposedly helpful (I have yet to try as it’s not cheap) is major autohemotherapy, also known as blood ozone treatments. I’m currently using l-lysine, purified silver, lauricidin, spirulina, liquid zinc, molybdenum, and Acyclovir Rx (and completely clean diet including no nuts or chocolate) that I’m doing does anything.
P.S. For anyone taking any other kind of monlaurin-lauricidin is hardened pellets you swallow w/ water-I had envisioned it being similar to coconut oil so procrastinated switching, but would encourage switching as it not only works better as previously stated on here, you also get more servings from each bottle.
Laura Zera says
Hi Becky! Welcome to the EBV gang!
Apparently my doctor doesn’t want to see me stomping my feet, because she’s talked me into holding off on testing again for a while. She has cautioned me that sometimes it takes years for the numbers to return to normal range, if they ever do, so we’re working based on symptoms, not test results. And I’m still really really tired!
I’ve never heard of a Bemer mat or heard it referenced on this post, and I don’t believe anyone has discussed the infrared sauna, either.
Re: contagiousness — I don’t believe it is, but you’d best check that with your doc.
Re: complete recovery — I think there might be one story from someone who recovered, then got it again a few years later. I don’t recall anyone saying that they recovered and never had to deal with it again, but honestly, most people haven’t come back to update their status after trying treatment, so the info isn’t conclusive!
Finally, kudos to you for eliminating nuts and chocolate. I’ve been taking l-lysine and eating a lot of other good things for EBV, but have never been able to get rid of the nuts and chocolate. And I wonder if I’m shooting myself in the foot, by doing all this other stuff, but not that. Gah.
Michael says
Hi, I’m curious as to why nuts and chocolate must be eliminated for CEBV? Perhaps milk chocolate, peanuts and cashews, but dark chocolate, and the other nuts are healthy to eat.
Laura Zera says
Hey there, Michael! Dark chocolate and nuts are high in arginine, and if the arginine/lysine balance is tipped heavier to the arginine side, it “feeds” EBV. Hence why I take a high-dosage supplement of lysine, to keep a better balance, because I’ve not eliminated the other two.
If you want to read more on this, a Google search will turn up lists of foods that are high in arginine and should be avoided, because there are more, sadly. Some of the articles will say “avoid for herpes,” and, as you may or may not know, EBV is a distant cousin in the herpes family.
Michael says
Hi Laura,
Thanks for the info. While googling this I did see that taking any amino acid on a regular basis is not a good idea, and also there seems to be some difference of opinion on the effectiveness of taking Lysine supplements for the Herpes virus. Thanks again, Mike Here’s the article:
Tuesday, August 16, 2011
Herpes And The Lysine Lie
The companies selling Lysine supplements have done a great job in getting people to buy a substance that has little value in managing a chronic herpes infection. Lysine has never been shown conclusively in clinical studies to be an effective long term treatment for herpes and in the short term it has never been shown to be more effective than a garlic supplement. Long term use of lysine supplements suppress the arginine levels in your body to a point where it begins to impair your immune system because your immune system does actually need a certain amount of arginine to function properly.
You cannot manage herpes just by popping a pill whether it comes from a drug company or a “natural health” company. This isn’t “the valley of the dolls” you actually can get through life without being dependent on pills.2. Nuts – Nuts have many health benefits, and they’re perfect for when you need an energizing snack from snack vending machines. When eaten as part of a balanced diet, nuts can lower your cholesterol levels, so you’re at less risk of developing blood clots which can contribute to heart disease and heart attack. Nuts contain a range of nutrients and substances which are good for your heart, including unsaturated fats, omega 3-fatty acids, L-arginine, Vitamin E, and plant sterols. Nuts are also packed with fiber, and the good thing about fiber is that it makes you feel full. So, nuts are a surefire way to tie you over to your next meal.It does take more work to take care of your body naturally than it does to pop a pill. I for one think your body’s worth it. I think your life’s worth it. Some would disagree, but at least I’ve made the point.Like all things in your body, balance is the key. Your immune system depends on a good balance between lysine and arginine and the best way to achieve this is to get your lysine through your diet the way your body was designed to instead of through a pill. Eat the foods high in lysine, avoid the foods high in arginine. Simple.1. Dark chocolate – It may surprise you, but dark chocolate can actually be very healthy for you. Unlike milk chocolate and white chocolate, dark chocolate is full of antioxidants, which eradicate free radicals that can contribute to heart disease. Basically, antioxidants help lower cholesterol levels and blood pressure, so that means dark chocolate from snack vending machines can help keep your whole cardiovascular system running well. And, even better, dark chocolate can have more immediate positive health effects – it contains serotonin and stimulates endorphin production, which means that it can help lift your mood.
Christopher Scipio
Homeopath/Herbalist
Holistic Viral Specialist
Laura Zera says
Hi Michael, I’m not surprised there’s some opposing info out there — there is for everything, really, isn’t there? So thanks for sharing. It’s always good to read both sides.
Amy says
Hi Laura
Thanks for your post and all the info here. I was recently tested for EBV after complaining to my naturopath for a long time about crushing fatigue. Recently I found out that I have adrenal fatigue (cortisol levels way below normal at this point due to lots of stress in life and anxiety disorder), and I am going through that fun rollercoaster we call peri-menopause. Oh, and anemia, too. So my doc has been giving me supplement support for all of those things and I am STILL dragging – like barely able to function some days, so she decided to test me for EBV since I had mono when I was a teenager- and lo and behold my numbers have back quite high. I am taking Cat Claw and another supplement now in addition to my other supplements for the other things (my kitchen is a veritable pharmacy of supplements). My thryoid is normal (its been tested repeatedly).
I am curious to know how you are doing? Is there anything in particular that you have found to be helpful in your EBV journey?
Laura Zera says
Hi Amy, I’m sorry to hear about your challenges, although I chuckled when you said your kitchen is a pharmacy — I have actually been keeping a spreadsheet of the different supplements I both try and take regularly, for EBV and other things, and my daily pill tally has gotten quite ridiculous at times, especially when I was power loading Vitamin C because they only make it 1000 mg capsules (I was up to 18,000 mg a day). What’s so frustrating is that nothing about EBV is a one-month or even a three-month regime. This goes on for a while. Gah. (I say “gah,” but I really want to swear.)
Of all the things that I think have helped the most, I’d have to go with Lauricidin. I went through two jars of it earlier this year, and may try it again. I’m still fatigued, but I find it really hard to know what to attribute the fatigue to because I also suffer from depression, have the MTHFR gene mutation (so I don’t absorb my B vitamins properly), was recently diagnosed with Complex PTSD, and am an introverted empath. Basically, everything burns me out! I think I’m meant to live under a rock.
As you’ve just started on some new supplements for your EBV, I’ll just say that if you don’t find yourself feeling better in 3-6 months, it might be helpful to write down some of the supplements that are listed in this blog post’s comments and then discuss them with your naturopath. But yay, I’m glad you’re seeing a naturopath! They’re one of few practitioners equipped to deal with the complexities of multiple diagnoses/issues.
Hope you’re on the road back to having energy soon!
Lisa says
Hi Laura,
Thanks for all of the info provided in this blog and the comment replies! This has been helpful to me since I was diagnosed with reactivated EBV a bit over a month ago.
I had a check-in/follow up with my ND after going through a kidney stone that didn’t pass on its own and having a surgical procedure to have it removed. I wasn’t recovering as quickly as I expected and having so much fatigue, nausea and vomiting. Perhaps the trauma triggered it?
My ND did a number of blood tests and noticed my liver enzyme markers (AST/ALT) were elevated, which prompted her to test for the EBV early antigens. That’s the only one she ordered… she doesn’t feel the other EBV results are really that meaningful. Anyway, my EBV EA was 123. I was never diagnosed with mono. I was diagnosed with a virus when I was in college that lasted most of an academic year and made me really run down and susceptible to secondary viruses and infections. I’m guessing that was my initial EBV infection.
I got Lauricidin a couple of weeks ago and I just started the acyclovir last week. My ND also prescribed a thyroid med for the next couple of months even though my thyroid function seems OK. She’s trying to boost my energy. I also am MTHFR compound hetero, so I take methylfolate. I take an adrenal support supplement (for adrenal fatigue) that has other good Bs in it. Cal/Mag, D3 and K2 round out my vitamin/mineral supps. Being peri-menopausal I take progesterone. I also take hypericum and 5-htp to help boost my serotonin to battle anxiety (these are working really well for me). I trying to get a lot of rest, drink lots of fluids and minimize my commitments outside the house other than work.
I am feeling gradually better! My nausea went away and my appetite has improved. I’m left with fatigue and intermittent aches.
The thing I was trying to research and haven’t found much information on is an IV treatment using a medication called Artesunate. This is what my ND wanted to treat me with at the initial diagnosis, but after scheduling the 6 treatments (expensive, not covered by insurance) her office informed me they couldn’t get a hold of the Artesunate anymore. The pharmacy they were sourcing it from stopped making it. It’s used for treating malaria, but it’s being researched for treating cancer and, apparently, as an anti-viral. Such a disappointment because she said most EBV patients feel a lot better after 2 or 3 of the 6 treatments (you get 2 or 3 a week for 2 or 3 weeks). !! Sounds great, right? Anyone else ever hear of this or give it a try?
Thanks to everyone on here for sharing stories, advice and encouragement. I wish you all improving and good health.
Stacy says
Lisa,
I’ve been doing artesunate/vitamin c infusions since April. I did about 8 of those, then got a Myer’s coctail infusion ( https://imcwc.com/html5-blank/improve-health-with-a-myers-cocktail/ ) I think the Myer’s really helped to get my head above water. I do three vitamin c/artesunate infusion, then one Myer’s. I’m working on weaning myself off the infusions, so I was doing 1/week, then went to once every two weeks, and now I’m down to once a month. They are expensive, but so very helpful. In addition, I think that for me, the Byron White Formulas A-EB/H6 and A-Inflam have helped me to feel better. My ND office also said the artesunate is currently unavailable, but it happened before and took months to get it back in stock. Hopefully it eventually becomes available again. I never took the acyclovir.
Battling chronic EBV/Adrenal fatigue/chronic fatigue has certainly a slow, grueling process to find what works. I am finally feeling more normal, although I have to be very careful to rest. I don’t know if it’s normal, but my lymph nodes under my jaw line start to ache when I’m feeling pooorly.
Hope you get to feeling better. You’re certainly not alone!
Stacy
Lisa says
Thanks, Stacy, for sharing your experience!
Laura Zera says
Hi Stacy, I’m glad to hear you’re feeling more normal these days! I have a question for you: is Artesunate the same or similar to artemisia/wormwood? Happy New Year!
Laura Zera says
Hi Lisa, sorry it’s taken me so long to reply to you! Lots going on this time of year. And it’s also not helping with my “good” diet.
I’d not heard of Artesunate before, so I’m glad you brought it up, and Stacy weighed in. Infusions are interesting to me, because I feel underwhelmed by the supplements I’ve been taking, in that I’ve never had horrible symptoms, but the fatigue I’ve always felt is still present. But part of me feels like infusions are a costly option for something that I’m not even sure is my “primary” issue (when considered in conjunction with other things). If your ND is able to eventually get the Artesunate and you do the treatment, I’d love to hear how you feel afterward.
Anyway, I’m going to toddle off and ask Stacy a question now. Hope you’re noticing progress with your overall wellness. Happy New Year! – Laura
Angela says
Wow, I always thought my EBV was reactivated , but I have Lyme. My EBV panel readings are high like yours too. How are you today? I have radically eliminated food perpetrators, added supplements, better than I was 6 months ago. Hope you are too.
Laura Zera says
Whoa! Lyme? Darn, it is getting more and more pervasive, but at least diagnosed more now, too. The treatment for Lyme is way different than for EBV, although it doesn’t surprise me that you tested positive for EBV (I saw that you got those tests back in Nov.). After having gone through Lyme with my husband, I will offer this: make sure you get tested for co-infections (other viruses that deer ticks tend to carry along with Lyme; my husband had two and they required different meds than the Lyme infection), and don’t be afraid of doing the antibiotics for a lengthy protocol if you’ve got someone working to balance it with suitable probiotics (my husband was on up to three antibiotics at a time for 2.5 years and his stomach never wavered because of the good probiotics).
I think I am better than I was a year ago, but have kind of plateaued over the last half a year. Sometimes I just don’t have enough time to do all the health maintenance that I’d like to do, especially when I’m also doing appointments for acupuncture, chiropractic, psychotherapy, etc. It’s a full-time job! Good luck with your Lyme treatment. Let me know if you have any Lyme questions, because my experience with it is quite recent. — Laura
Jeff says
I have some great news. First let me say that is is not a cure for me (so far), but is stopping my attacks dead.
It is a food additive known as BHT. I have tried to post links to information about it but my posts never get through, so PLEASE research this stuff before you start taking it. It can be dangerous in high doses. Earth clinic has a video on youtube, but I strongly suggest you search the web as well. There is a free PDF book by Steven Fowkes about BHT for Herpes on the web. Never start with more than 250mg per day. I started at 500 (against all recommendations) and got a nasty rash on my legs, and joint pains.
It is supposed to rupture the lipid coating on herpes viruses (possibly lyme as well) like monolaurin, except that monolaurin did nothing for me after 5 months. BHT stops my attacks cold. It didn’t do this immediately, but after 2 weeks it began to. The thing is, whenever I do anything intently, whether it be reading, or guitar, or even walking, I begin to get sick. Fatigued, nauseated, etc. An hour after taking BHT I am normal again, and can continue these activities symptom free for hours. Unfortunately however, the symptoms come back hours later. I am hopeful that over time this effect will be more permanent.
It is like taking a Tylenol for a headache; nothing short of miraculous for immediate relief.
Again, please research this first. It is very potent stuff, and there are contraindications. Alcohol for example can be dangerous with BHT. If I can be of further help just ask, and I will report back on my progress in the future.
Regards.
Laura Zera says
Hi Jeff. BHT, hey? Never saw that one coming! 🙂 I appreciate you adding the cautionary notes to your post. I’m curious, though: who recommended it to you, or how did you come to deciding to try it as a treatment for EBV?
Jeff says
Hey Laura. I found a post about it by chance after hours of searching for cures. Earth Clinic was the site. “BHT cures and benefits” In fact I just made a post there about it in the EBV section of the site. I have improved even more since I posted here last. It is really quite amazing. My “attacks” aren’t really even attacks anymore; just general malaise for a few minutes. Interestingly, my lymph nodes are killing me now; whereas for the past year they have never hurt; they were just swollen. Healing is definitely going on finally.
I would not have tried BHT but for the fact that I had tried everything else (perfect diet, herbs, supplements, etc). I am sure all of that kept me from being much sicker though. BTW I am back to 500mg per day with no side effects. Turns out my body just needed to adjust or it was a “die off”. The former is probably true.
Laura Zera says
Thanks, Jeff. I wish you continued healing, and a happy new year!
Jeff says
UPDATE: Hey everyone; I just wanted to update anyone who may have read this post about my progress.
After 2 months of 500mg of BHT I was doing quite well as I said, with very mild symptoms once or twice per day. I was ble to do just about anything I could do before I was sick. I began to try exercising, and I seemed to plateau. What I mean is that I did not get worse, but stopped getting better. I doubled the BHT to the maximum recommended dosage of 1000mg per day (in divided doses). I began improving again and had no side effects.
Fast forward to now; 4 months later. I have been able to upgrade my exercise a bit more and am mostly symptom free; about half that of 2 months ago; but I am still not cured. My nodes still hurt and weird stuff still happens. If I overdo it I have mild symptoms.
I have read that Hypericin from Saint John’s Wort works with BHT as an antiviral. Dosages are from 900 to 1500 mg per day of the wort standardized to .3% Hypericin. I began this treatment a few weeks ago and have increased the BHT yet again to 1500 mg. Folks, this is (possibly) dangerous, and I plan on seeing a doctor to monitor my liver function at this point, though after all I have read I am not worried.
Will update about the St. John’s after a few months, but so far only the BHT acts immediately and obviously.
No cure yet, but the BHT does work. If the EBV is in the tissues and hides forever, we may never be able to get rid of it. The BHT eliminates the coating on the virus and it is destroyed immediately by the immune system, but can it kill it if it is hiding? I don’t know. Wish I had learned about EBV when I was younger; perhaps I would have been more careful with my immune system. While I have otherwise excellent nutrition, my vitamin D was very low for 8 years, and is probably how I got sick. Good luck everyone.
Laura Zera says
Thanks for this update, Jeff, I really appreciate it, and I’m sure others do, too. And of course, I’m glad to hear you’re getting better!
Nancy says
A test done in 2017 noted: EBV VIRAL CAPSID AG (VCA) AB (IGG) was 318.00 H U/mL. Does this mean it is active? My doctor is not treating me for it.
Laura Zera says
Hi Nancy,
Your test name is a bit different than what mine were listed as, so I can’t interpret, but I wouldn’t definitively say yes or no anyway—-really, a professional should review it with you. My suggestion would be to seek out someone who really knows EBV, and that usually isn’t a standard GP.
Shawna says
Nancy did you get any info from your doctor? My doctor ran the same test and mine is also high. Anything >21.99 is positive.
Delayne Shipman says
I was diagnosed with mono over a year ago. I am a 58 year old female and am still suffering with blisters on my throat, chronic fatigue and constant headaches and sinus problems. I am really scared at this point. I’m starting over with new doctors to fight this.
Laura Zera says
Hi Delayne, glad you found this post and I hope all the information in the comments is helpful. Wishing you good health!
Becky Schellinger says
Hello! Wanted to update first, a great book (pub 2018): The Epstein Barr virus solution by Dr. Kasia Kines. Also, I tried the UV light blood treatment and hydrogen peroxide IV…I felt amazing (more human that I’ve felt since re-activated EBV) for about 10 days…it tapered off, but overall doing better since…other than that tx, I think the lauricidin and silver hydrosol is what has helped me personally the most. With my blood pressure being on low side, quite a few other supplements I tried dropped it too much. I’ve heard several blood treatments are usually needed. Ozone therapy (major autohemotherapy) is different and may work better for some. I have not tried that. Keep focusing on little steps you can take to get better….even if it’s simple things like getting some sunlight or somehow increasing your circulation, etc….those things add up. Happy New Year to each of you!
Laura Zera says
Hi Becky. Progress! That’s great to hear. I’m like you with the low blood pressure but haven’t had it further impacted by what I’ve tried so far. I like the Lauricidin too! Am going to do another round of it in Feb because I’m traveling all of Jan and my diet is terrible. And oooh, a new book to check out. Excellent! Wishing you continued healing.
David says
Hi there and thanks for sharing and I had mono about 5 years (I was positive on all EBV tests). Since then I have taken EBV tests every year and although the EBV Ab VCA, IgM <36.0
The other scores have gone up and down and following are the averages over the years
Is it me or do they seem really high? I am meeting my GP on Monday and we have done nothing other than to 'rest' more …I have had chronic fatigue for the last 5 years. So am going to seek a specialist since perhaps there is an auto immune disease or something? I am open to ideas of specialists or diet or treatments and thanks !
EBV Early Antigen Ab, IgG = 124
EBV Ab VCA, IgG = 591
EBV Nuclear Antigen Ab, IgG = 520
Laura Zera says
Hi David, I think the test result numbers can get really high, from what I’ve seen (from my own results and others who have posted here). I think the best thing to do is to find someone who will work with you on your symptoms and/or what you want to address. If you’re tired or being tired, then maybe it’s time to look for a new doctor. People have listed so many different treatment options in the comments that it’s really worth perusing them. I’ve taken some of other people’s suggestions/treatments and discussed them with my naturopath. Good luck!
Jan Gardin says
It is really that bad!
I was diagnosed with RA years ago. After 4-5 different meds that didn’t work I started the infusion therapy with Otezla (I think that’s the one anyway). Not seeing enough improvement my nurse was the one who decided to test for EBV. My numbers came back near 600!! WTH? I didn’t even know what EBV was.
Great …. now something else to deal with. I’m too tired for this crap. I have things to do!
For 3 months I’ve been on the Remicade infusion along with methotrexate and Valtrex. Do I feel better? Sometimes yes. Sometimes no. I’m tired. My body hurts. I don’t appreciate this at all.
I just want to feel better and get on with the things I want and need to do.
I think handling all the bleach, bug spray and round up (I am a Master Gardener and live my plants) has totally messed me up. Growing up in the first place they tested a nuclear bomb didn’t help. We drank water from the hose growing up! My whole block died from this and that. The whole twin has enormously high rates of chronic diseases.
Now I deal. Day to day. Some days are better than others.
Laura Zera says
I’m so sorry you’re dealing with this, Jan! One thing I will highly encourage is that you read up on what diet is best for healing EBV. For example, eggs are out, because they can re-activate EBV that has healed or gone dormant. But there are also lots of good things to add to the diet to help with healing. I wish you comfort and ease as you go forward.
Jacki says
This blog has been super helpful to read through. I’ve been suffering from “mystery symptoms” for 8 months now and was just diagnosed with reactivated EBV. My symptoms are primarily neurological: pins and needles, muscle twitching, muscle/joint pains. I have had countless blood tests, neuro tests, and everything is normal. My new functional medicine Dr is starting me on high dose Vit C and I’ll do some Myers cocktail infusions. I tried reading through all the comments in the thread above, but I haven’t seen anyone with the same symptoms as me so I remain a bit skeptical of the diagnosis, although my EBV results do align with what others are saying is reactivation. Really frustrating situation as I am a very healthy 35 year old!
Laura Zera says
Hi Jacki! I’m glad you’re finding good info here, and sorry to hear about your symptoms. Hey, have you been tested for Lyme disease? Your symptoms sound very Lyme-y to me. Hope you get to the bottom of it all and start feeling better soon.
Jamie Leclerc says
Also sounds eerily similar to my mold toxicity symptoms. Which is what elevated my EBV levels.
Laura Zera says
It seems like so many of these things go hand in hand. I had issues with mold a couple of years ago, too, and had to stop going into a particular building. But my mold symptoms felt a lot like my EBV symptoms!
I’m getting re-tested for EBV either this week or next and seeing my doc to review lab results in early Sept. How are you doing, Jamie? Have you found long-term relief from the magnet therapy?
Jacki says
Also- how would I even know if this could be mold related? Is there a blood test for that?
Laura Zera says
Hi Jacki, I don’t think there’s a blood test for mold, but if you think you may have been exposed to it, it’s easy enough (and inexpensive) to do a mold detox protocol just to rule that out.
Jamie Leclerc says
I am still unwell. Unfortunately, I had to discontinue the magnet therapy back in the beginning of spring because I got to the point that I was unable to walk due to so much inflammation. At that point I also tested positive for Lyme and was “successfully” treated…at least we hope so! I am back on my feet but the exhaustion is fierce at times. My inflammatory markers were starting to work their way towards more normal and my EBV numbers were also very slowly decreasing. Following the Dr. Shoemaker mold protocol, as the specialist feels this is the underlying factor, I started VIP spray. This was supposed to help the inflammatory markers that I was struggling with become more in the normal range and also give me some energy. After a few weeks of the spray I did notice an energy shift in a positive direction but at the same time I was noticing the my sleep was very disrupted. So I had more energy but oddly enough I was feeling more tired…if that makes any sense. I recently had my large group of labs rerun and it appears that all those markers are heading back in the WRONG direction! Totally frustrating. As of this week, I feel as if I walk through the day in a big fog and find myself trying to distract my thoughts of how utterly awful I feel and the frustration that comes with it. I go back to the specialist the beginning of Sept. I am clueless as to where we are going from this point as I was under the impression that the VIP spray was gonna kinda settle all problems…which has not been the case.
Laura Zera says
Oh crap, Jamie, I’m so sorry that you’ve had these setbacks. When you were tested for Lyme, was it the standard Western blot test, or the one that also tests for co-infections?
Jacki says
Actually the first holistic Dr I saw suspected Lyme but test came back negative and I am very low risk factor for tick bites, don’t recall ever getting one. Not sure if you have ever heard of the CD57 white blood cell count, but mine was very low which is loosely correlated with Lyme. I’ll see if treating EBV makes a difference!
Jake says
Jacki I have been having a lot of neurological problems as well. I’ve been in and out of doctors offices and hospitals. I’ve seen neurologist, cardiologist, my primary care, a psychologist and many ER doctors. All these doctors couldn’t find anything wrong with me. They performed numerous tests and only finding minimal things. But they all came back saying I was normal but I knew I wasn’t normal because I was suffering from muscle convulsions, random aches, pains, lymph nodes swollen, and many more symptoms. When finally my wife asked them to test me for EBV. It came back positive of a reactivation. My levels were the highest the doctors had ever seen before. So i know your pain or have an idea of it. I would like to know about your story and talk to you a little more. It’s good to know I am not alone.
Jacki Colomb says
Hi Jake- I was diagnosed by the neuro with Benign Fasciculation Syndrome (BFS). This was after having nerve conduction and EMG tests which were normal. My primary symptom is muscle twitching….it essentially came out of nowhere about 8 months ago. All “regular” doctors think I’m crazy, so I’m sticking with the holistic/alternative doctors. I don’t have swollen lymph nodes or sore throats, etc, so EBV still seems questionable but the tests did show reactivation. What are you doing to treat your EBV?
She-Ra says
Laura, I am curious if you got recent results back? I got mine this week and the EA is 74 (def reactivation). My other numbers were much higher than yours, however from what I hear the other numbers are far less of a concern because 1. they are always positive post 1st exposure, 2. There are people with lower numbers feeling way worse with more complications than those with higher numbers so the correlation simply doesn’t match for any consistency. I came up with the notion to test this on my own accord when I crashed in July. I am still crawling out of this and unable to work full time yet. Thanks for sharing your story and thoughts.
Laura Zera says
She-Ra, I’m retesting on Monday! So will post results in a couple of weeks’ time. I’ve held off on retesting for a long while as my ND advised that numbers can stay high for a long time even as the virus has gone dormant again. What you said about test numbers is also what I’ve heard. Good luck, I hope you find a protocol that works to help you feel better soon, and if you have any other questions, we’re here!
She-Ra says
I’m glad you have heard similar sentiments regarding the numbers. I look forward to hearing your current numbers. I will be retesting in a month or two myself. Hoping for the best for us both. xoxo
Marcia says
Hi Laura, wonder how your progress with EBV has been and if you’ve continued with antiviral treatments, how many years have you been on them?
I just started taking antivirals last month, but i cannot tell if it’s working yet.
Regards,
Marcia
Laura Zera says
Hi Marcia, I just got re-tested today. Will review the results with my doc on Friday, Sept.13 (which I’m taking to be an auspicious day for this).
I didn’t continue with the antivirals as they weren’t doing anything for me, as far as I could tell. I had more impact from diet modifications and taking Lauricidin (which I’ve talked about a bit in other comments; if you search on the word you can get the info).
I hope you are on the right track for your healing! If the antivirals don’t get you feeling better, there are many other treatments discussed in this comment thread that you could discuss with your doctor. Good luck!
She-Ra says
How can you wait that long!?! Lol. I would be wanting a copy/patient portal access now!
Laura Zera says
Ha! Ahhhh, this whole thing has been a marathon.
Jake says
How are you feeling now? Are your levels down now?
Laura Zera says
Nope! Sorry for this brief answer, but I’m super annoyed. Seeing my doc to discuss next week. Will post more later.
She-Ra says
Laura I am so so sorry to read this. We are always looking at the numbers of those who are “sick”. I really want to look at the numbers of those who have never had EBV on their radar (but have been exposed in the past). In other words- if we simply tested 50 random people at Disney World, what would their EA and EBVNA be? Curious to hear more about your results.
Laura Zera says
I have wondered that too, She-Ra. Or 50 people who said, “my health is excellent, I feel great.”
She-Ra says
I recently had a convo with a gal who has EA over 150 with no symptoms. Obviously, we know very little about any of this. To double dip/reference a comment below- I keep hearing really good things about Kines book too. It’s been on my radar to get her book. I am on the fence about rechecking my numbers because maybe it doesn’t serve us to get heady about them. I recall years ago when I was 1st exposed to EBV I had chronic sinus issues. Classical homeopathy was the most helpful thing for me. Not sure if you have tried that yet. I would recommend a very committed experienced classical one, not one who dabbles the way chiros or even ND’s do. Keep us posted. Thanks for all your sharings here.
Laura Zera says
Yes, I think I’ve said this before here, but my ND is primarily treating me based on symptoms, not on the numbers. It was almost two years between tests for me, because she didn’t think it was all that helpful to keep re-testing. As for the Kines book, I’ve got a library hold on it, so just waiting for it to come in.
I’m going to post some info from my treatment adjustment below, and also add it at the top to the post. All best to you, She-Ra!
Sara says
Very sorry to hear this too Laura — and FYI I’m having the same issue, after a year and a half of daily intravenous ozone therapy (which I was doing to address chronic Lyme anyway, but which should have wiped out the EBV handily) plus several courses of Lauricidin etc.
My docs have said two things: that some people’s antibody titers just never go down, and they have to simply look at symptoms and treat those; and also, that if you have an underlying infection that is causing your EBV to reactivate — because your immune system is struggling — until that’s addressed, your body won’t be able to fight the EBV.
In my case I guess this has been Lyme; Laura, are you dealing with other issues that could be preventing your body from being able to send the EBV into dormancy again?
Laura Zera says
Ugh, sorry to hear you’re dealing with Lyme, too. Has that at least subsided? My husband had it, so I’ve been down that long road with him.
I don’t know of any other issues that could be affecting my immune system, except perhaps for a low-grade infection in my sinuses (my weak spot). I had sinus surgery in 2016, and the biopsy reported infection which I probably carried around for years, with sporadic full-blown take-the-antibiotics infections.
My doc has said the same thing about the antibody titers, and may reiterate that when I see her next week. But the two things that I complain about most — my sinuses, and fatigue — continue to bother me.
Becky Schellinger says
Hi Laura and others,
I’m so sorry to hear your levels haven’t changed….this is a journey for sure.
I’m almost 2 years in, and just had the levels rechecked and they have not changed at all unfortunately. I did have a co-infection w/ H. Pylori but thankfully that has been successfully treated. My early antigen is still >150. I am however feeling much better overall, mostly struggling with fatigue and some other minor symptoms. I’m assuming the fatigue is because if you have chronic reactivated EBV, you automatically get CFS from what I’ve read. I have had so many tests and been to so many Dr’s…functional, my primary, neurologist, GI, cardiologist, infectious dz (by far the worst experience)…and yet, the most helpful for me personally has been tips given both online (from here and other sources), and also from Dr. Kasia Kine’s book The EBV solution. I agree with you that there is no “cure” for chronic reactivated EBV, but rather it is managing the symptoms, eating healthier, managing stress, etc. It took me this long to realize this and come to a place of acceptance. It’s learning to live with a new normal…basically, the serenity prayer.
Laura Zera says
Thanks for this, Becky. Some interesting things to ponder, and I will be sure to check out Dr. Kine’s book. xo
Merli says
I also have chronic EBV and I am taking Biocidin to treat it. How long should I take it?
Laura Zera says
Hi Merli, I’m sorry to hear that. Are you working with a doctor or clinician of any sort? A professional who is well versed in your overall medical condition and your EBV symptoms should be the one to guide you on treatment plans. Good luck!
Laura Zera says
Hi all, I’ve added some updated test results and treatment information to the bottom of the original post.
She-Ra says
Hi Laura.
I too got my results.
1st test was 8/19:
Igm- negative
EA- 74
VCA- 299
EBV NA- >600
2nd test 10/19:
Igm- negative
EA- 78
VCA- 287
EBV NA >600
I have been on a strict diet, acupuncture, yoga and herbal regime btwn the tests. I feel better but not fully myself. I really wonder about all of this. How is it you can feel better but have these results?
Laura Zera says
It all seems like such a murky gray area, doesn’t it, She-Ra? I’ve heard that test results will stay positive long after an active virus goes dormant again, and that it’s not worth re-testing too closely. I’ve heard people talk about how hard it is to attribute certain symptoms to EBV or know if it might be something else. I’ve heard that EA is the only number that matters. How heavily can we lean on these test numbers? I don’t know. I’m at least glad that you’re feeling better.
Jose says
Hi, everyone , my English is very bad .
In 2015 I had mono.
In 2018 , under stress , this virus was reactived.
I was a more medics, neuro,family doctor , oftalmolog and nobody was what happened.
2 months ago , one medic detected reactivation this virus .
My result are this:
Epstein bar (vca) igG positive ………………204 u.arb/ml
Epstein bar (vca)igM negative
Epstein bar (ebna) positive…………………….158 u.arb/ml
Epstein bar(ea) Positive….:………………..48 u/ml
From 2 weeek ago the doctor give me this medication:
2 lebv (microinmuneterapy)
Omeg3
Then I bought vitamins c 1 gram per day
Magnesium
Monolaurin
Laura Zera says
Hi Jose, welcome! It’s great to have international visitors, though I’m sorry you have active EBV!
I don’t know what the “2lebv” is, but it came via your doctor, so that is good. Omega3 is always good for everyone for everything! Same for magnesium, as it’s hard to get it from our food (pumpkin seeds have a lot of magnesium). Vitamin C and monolaurin are both commonly used for active EBV, so again, that’s good.
I wonder if you can get this book in Spanish: https://www.amazon.com/Medical-Medium-Thyroid-Healing-Hypothyroidism/dp/1401948367. It has a lot of good advice in it for diet to help heal EBV.
Good luck! I hope you are feeling better soon, but also know that EBV can take a long time to heal, so you are running in a marathon now.
Jose Luis says
Yes,i know Will be hard .
2lebv IS the labolife , you can looking for if you want .i read much about this virus and Many people say that one the BEST theathment IS the monolaurin.
Other IS bht, u can read about this
Laura Zera says
Oh, thank you, I’d never heard about BHT, but found it for sale on Amazon and will ask my naturopathic doctor. As for Labolife, my guess is it’s only available in European pharmacies, but I’ll check on that, too.
Ro says
Ro,
I have reactivated EBV and cancer. I’ve been doing a lot of research and learned of the Cistus Incanus tea and how it helps with retroviruses. https://klinghardtinstitute.com/teachings/simple-cistus-incanus-treatment-for-chronic-illness-and-retroviral-infections/ and purchased it. I’ve been drinking 6 cups per day with whole stevia as Dr. Klinghardt suggests and will have my EBV levels checked at the end of November, nearly one month after starting the tea.
I’m hoping the tea will put the EBV back into remission and may help with cancer too.
Laura Zera says
Oh, that’s a new thing I hadn’t heard of before. I’m sorry to hear about your health challenges, but good luck, and if you have the time/energy, I hope you’ll come back and share an update after you’ve re-tested for EBV. All best to you.
Ro says
My results were too low to register when I was retested for EBV!! The tea and stevia worked for me.
Unfortunately, it is nearly 2 years later and both my cancer and EBV is once again reactivated although I my functional medicine doctor didn’t run an early EBV test. I will once again start drinking the cistus tea with bioavailable stevia (found on Amazon.) The tea I bought and will buy again is from Linden Botanicals in Denver, CO. I am not affiliated with them.
Kristin says
Can you please help me? I am so sick and don’t know what to do. I have just been diagnosed with chronic EBV and it is really bad. I have bloodwork you can review. I also have Hashimoto’s and lupus. My axillary lymph nodes are enlarged. I have a biopsy this week. I need to get better. I truly feel like this virus is killing me. I have a beautiful two year old daughter and she needs me. Please, I am begging you to help me or guide me in the right direction.
Laura Zera says
Dear Kristin, I am really so sorry that you’re going through so much all at once. I’m not a medical practitioner, though, so my way of helping is to create an information-sharing space that people can read and use as they see fit. Are you seeing an infectious disease specialist, naturopathic doctor or functional medicine doctor? One of those types of professionals would be the place where I would seek a treatment plan. There’s also lots of information in the comments section — information that you can take to your healthcare practitioner for discussion. I wish you healing and good health. – Laura
Kristin says
Thank you for your kind response Laura. Yes, I just got an appointment with an infectious disease doctor and an immunologist. I am very hopeful that together they can come up with a plan for me. I will write back and share any good information that I get that could possibly help any of you. I wish you all good health and happiness. Sincerely, Kristin
Anna says
Hi Kristin-
I just wanted to send you some words of encouragement. I finally found out I had chronic EBV about two years after I had my son as well. I think the pregnancy and/or exhaustion that comes with having a newborn reactivated my EBV. I think I’ve pretty much dealt with it most of my life, but it was especially bad after I had my son. I was sick ALL the time with all sorts of weird symptoms; to the point where I could hardly take care of him and get to work… My poor husband had a few rough years there also.
I had gone to an immunologist and all sorts of people and no one could figure out what was wrong with me until my doctor finally decided to try doing an EBV panel. It was initially a relief to finally find out what was going on (and that I wasn’t just a hypochondriac crazy person). But then, when I started researching it, it was overwhelming, terrifying, and so frustrating.
The amount of research about our unfortunate affliction is so minimal… I’m the kind of person who is like… okay.. now I know what the problem is…. let’s fix it! But, unfortunately, there isn’t anything out there that says with any certainty what actually works. And I think most people post about it when they are really struggling as opposed to when they are doing well. So, it kind of makes it sound like there is no hope.
However, I can say that, while I am not “normal” and probably never will be totally healthy like “normal” people… I have been feeling SO much better. I did have one relapse for about a month after a really stressful time where I moved and so forth, but I made sure to rest and am feeling like my new “normal” self again.
I am by no means a doctor, but I can say that some combination of what I am doing must be working because I feel better than I have in decades. If you are interested, there are a few posts where I included all of the information my doctor gave me back on July 12, 2018. That one links back to a prior post with more info. (I’m not sure how to just include a link back to a prior post here).
One more additional thing that seems to help a lot is… as soon as I start to feel at all like I am getting sick, I take colostrum from a company called ‘NOW’. I get it on amazon. My doctor (who also has chronic EBV) recommended it and its sort of amazing.
Last thing I wanted to mention… this whole journey of not knowing what is wrong with you, how to deal with it, and being sick all of the time is SO stressful. It can definitely cause serious depression. About 2 years after I had my son and before I figured out how to deal with this EBV stuff, I got really depressed. I told my husband I thought I needed help and he found a counselor for me and I also started taking Prozac again. I’m not sure I could have gotten through all of it without those two things and the functional doctor I finally ended up finding.
So… long story short, take a look at the protocol my doctor recommended and don’t be afraid to reach out to a mental health practitioner as well as this is all kind of too much for most people to be able to take on without some additional support.
There is a light at the end of the tunnel!!!
-anna
The amount of research about our unfortunate affliction is so minimal… I’m the kind of person who is like… okay.. now I know what the problem is…. let’s fix it! But, unfortunately, there isn’t anything out there that says with any certainty what actually works. And I think most people post about it when they are really struggling as opposed to when they are doing well. So, it kind of makes it sound like there is no hope.
However, I can say that, while I am not “normal” and probably never will be totally healthy like “normal” people… I have been feeling SO much better. I did have one relapse for about a month after a really stressful time where I moved and so forth, but I made sure to rest and am feeling like my new “normal” self again.
Laura Zera says
Thank you for this update, Anna! And for your support of Kristin and everyone else who can be helped by this info.
Anna says
I have no idea why it posted the second part twice but whatevs!!! Seriously, though… thank you Laura for taking the time to host this board. This was one of the few places I found early in that really gave me some confidence that the path I was going down was the best one. Thank u ;).
Diana says
Hi Kristin,
I am sorry you are battling ebv. From my experience, it can take a long time to subside and for you to feel better, however, do not lose hope as there are things you can do to help yourself treat this virus besides what your doctor prescribes you. I have been battling ebv, bacterial infections and other ailments for many years now but I found out that by following a very strict diet for 3 months initially and then being very careful with what I eat now, I have managed to improve my symptoms a lot. I was told by my doctor to avoid for 3 months any food that had additives and to eliminate sugar from my diet as well as fish because of mercury. I had a diet based on lots of fresh fruits and vegetables, chicken and lots of pulses. I had no cakes, pizzas, ie-cream, sweets,white bread, buiscuits or treats for 3 months and noticed a big, big improvement in the way my immune system coped. I was also put on lysine and olive leaf for 3 months as well as other supplements to help my immune system recover from ebv. I was told by my doctor that lysine has lots of benefitial properties to treat ebv and other viruses. I also go to a steam room and a sauna 2 times a week and from what I have been told, this also helps your immune system cope with ebv and the other associated ailments that go with it. I live in the UK and I would recomend the private hospital outside London where I was treated. Best of luck to you for a full recovery!
Kristin says
Thank you Laura. I so appreciate your time and consideration. It means the world to me. I found this very very interesting article today that really shines light on EBV and also gives natural ways to kill the virus. Thought I would share it with you. Thanks again, Kristin
https://goop.com/wellness/health/the-medical-medium-and-whats-potentially-at-the-root-of-medical-mysteries/
Laura Zera says
Hey Kristin, that was Diana who shared this last part above, and thank you to you for sharing the article. I love the community of people supporting each other here!!
– Laura
Kristin says
Thank you Laura. Hi Diana, I apologize, I didn’t read the name before I replied on my last post. Thank you so much for your reply. I really appreciate the information that you shared with me. It is really nice to have found a place that people are caring and supportive. It helps me to feel that I’m not alone in this. I hope that you are feeling much better now and staying healthy. I hope to get myself there soon. Sincerely, Kristin
R. Tindall says
I appreciate this article. My PCM and neurologist couldn’t identify a reason for my constant burning peripheral polyneuropathy, fatigue, muscle stiffness based upon basic blood labs and MRI imaging.
Long story short I asked for a skin punch biopsy to test for Small Fiber Peripheral Neuropathy. The results came back positive. My neurologist then seemed interested in pursuing it further. Lumbar puncture showed elevated pressure and proteins, but otherwise the spinal fluid was normal. Eye test (OCT) showed thinning of my retinal nerve and ganglion cell layer in my right eye. The same eye I had been complaining about for years as having a deep burning pain, but was told that I have common migraines and can’t have cluster migraines at the same time.
Later a rheumatologist that specializes in Fibromyalgia (I’m her only male patient), spent over an hour listening to my symptoms and reviewing my previous blood work. She immediately cued in on my complement C3 being low with my C4 borderline low.
She ordered two lab panels, Lupus and EBV, and my EBV was like yours. Sky high. She diagnosed my with Reactive Arthritis due to the EBV reactivation; however she would not comment on my neurological symptoms.
In March I to a university research clinic for further neurological testing.
Laura Zera says
Hi there,
I’m sorry to hear all that you’re dealing with health-wise, and glad you found this post. I don’t know how much time you spent reading the comments, but that’s where the real gold is in terms of information. Also, the book by Dr. Kasia Kines — The Epstein-Barr Virus Solution — is really good. I’ve had it out from the library once and am on hold to get it again! Good luck to you as you take steps toward better health!
Rochelle says
The doctor I was seeing for breast cancer ordered a series of tests for EBV and I shocked at the results. I never even knew I had EBV in my life and when the results came back off the charts I couldn’t believe it. Although I have breast cancer, I feel and felt fantastic. When I got those results back I started doing research and came across your blog.
My continued research brought me to information on Cistus Incanus tea and how it helped Lymes disease and EBV. https://klinghardtinstitute.com/articles/sardinian-cistus-incanus/. I contacted the Klinghardt institute but the cost of shipping was too high so I continued my research and found https://www.lindenbotanicals.com/. I contacted the owner, Michael, who was very helpful. I ordered the tea from him and followed his brewing method but dosed it according to Dr. Klinghardt as well as using whole stevia leaf extract, Dr. Klinghardt recommends. I used 10 drops per cup.
Dr. Klinghardt suggested 6 cups per day or brewing it more concentrated. I did that with the Linden Botanical’s tea, drinking 4 cups per day for two months. My lab results were so low they didn’t register with an amount! I highly suggest trying Cistus Incanus tea.
Rochelle says
I do have a discount code for his new ShieldsUp kit that contains a small amount of of Cistus Incanus. *RS10*. You get 10% off on the kit. I don’t get any compensation. I just truly believe in this tea and Linden Botanicals. The Cictus Incanus was the only thing I did to get my EBV back into remission. I now drink one cup per day to keep it in remission and I like the taste of it. Best to all of you suffering from EBV and any related conditions.
Brun Jenkins says
Hi there. In 1982 I contracted chicken pox (17 yrs old). From that time EXTREME fatigue set in. I went from a great student, to barely able to stay awake in class. I barely made it through college. In 1995 I contracted mono. The fatigue just got worse. 1996 put on Levothyroxine. 1997 diagnosed sleep apnea. Still suffered extreme fatigue until 2011 when I was given low dose Dexadrine, which changed my life. Now I’m diagnosed with reactivated EBV last week and put on valcyclovir with extreme psychiatric side effects. I took it for all of 5 days and became so depressed it was frightening. I am so disgusted with my ND. What natural supplements would you recommend?
VCA IGM = less than 36
VCA IGG = 225.
EBNAIGG = 63.20
Early antigen IGG = 18 (should be under 9)
Thank you so much for any help you can provide.
Marcia says
Hi I also a Chronic Fatigue Syndrome and Epstein-Barr patient, not a medical practitioner- so although I can’t recommend treatment, I am also following Medical Medium supplements, switched to vegan as I had to eliminate the no foods. I’m taking Valacyclovir 750 mg a day, low dose Naltrexone 3mg at night, keto rifen 1mg was twice a day now 1 a day and was taking Celecoxib 100mg twice a day and now 1 a day. Brain fog and fatigue are still there, as well as pain, but I am walking 20-30 minutes 4-5 days a week, I manage to shower daily and brush teeth, for a while I had to choose one or the other and was cooking once a week (1 pot of whatever for whole week) and now can cook small/quick meals with a little more frequency during the week (not daily or 2-3 times daily yet) – i tend to eat 1 meal a day cause it takes effort to prepare meal and fruit or salad second meal – sleep is still an issue – even if I sleep 10 hours I wake up 5-6 times and get up tired or low energy – but I still go through days or week of insomnia too – so sleep is very inconsistent at night – but most days I take a nap in morning or afternoon to see me through the day – this is all better than jan/Feb a year ago – those drugs I started around Aug 2019 (diagnosed Aug 2018) – hope any of this helps!
Laura Zera says
Hi Brun, I’m sorry to hear what you’ve gone through. Marcia mentioned the one book in her comment to you, and I’ll add another: The Epstein-Barr Virus Solution by Kasia Kines. Very helpful with recommendations for natural supplements and food. If it makes you feel any better, I took Valcyclovir for more than two years and it didn’t do a thing for me. Also, if you read through the comments in this post, there are many shares of what natural items people have used and found effective or not. I wish you good luck and ease and comfort as you heal. – Laura
Becky says
Hi Laura, I am coming up on almost 3 years w/ chronic reactivated EBV; (also diagnosed w/ dysautonomia by a neurologist, and diagnosed w/ CFS by Mayo clinic-they do have a program that was very helpful on tips for dealing with CFS); I also had H. pylori bacteria that has been treated naturally as I’m not a fan of abx (I recommend anyone not healing from EBV get tested for H. pylori as co-infections can be the reason EBV is not healing according to what I had read, and that test is covered by most insurances). I recently heard about BII, and since I don’t see that mentioned on here yet, just want to get the info out there in case any women on here may be having chronic illness from breast implants (saline or silicone): https://www.healingbreastimplantillness.com/healing-breast-implant-illness/ Thanks again for this site Laura and your continued encouragement to each of us-be well!
Laura Zera says
Hi Becky, sorry for my delayed hello! And thank you for sharing that info. Although it can be exhausting to explore all of these different avenues of “what might be causing what,” it’s equally exhausting to suffer from uncured EBV, so explore we must. Wishing you well as you work toward healing. xo
Randy L Stone says
Im asking for my wife, she has CAEBV and has appointment for covid vaccine. In your opinion, is it a good idea? Thanks, RANDY
Laura Zera says
Hi Randy, it’s a good question, but I’m not the right person to answer it (nor are any commenters on this blog, unless they are MDs or NDs or equivalent). Sorry I can’t help. I hope you can contact the doctor who ordered the EBV blood tests for your wife to ask this question. Good luck.
Tessa says
Thank you for this space, i am struggling with an ebv reactivation that i haven’t got on top of for years and am getting hopeless. I am at the end of my rope. I’m in the Pacific Northwest if there is anyone who can help.
Laura Zera says
Hi Tessa, I’m so sorry to hear that, although I can absolutely relate right now as I’m not great either! I’m about to go looking for Lauricidin, as that has been good for me in the past. Have you tried it?
I don’t know where you are in the NW, but I lived in Seattle for a long while and can send you the name of the ND I saw there, if you’d like? She is quite knowledgeable about reactivated EBV.
Take care, Tessa. -Laura
Miss D says
Hi Laura- I’m new to this chat group.
Could you please speak more about the Lauricidin and how it has helped/made you feel better, and which brand you chose?
I’m also originally from the PNW, have had EBV for over 30 years and still struggle like a rollercoaster, even with Functional doctors. Currently in a big “flare”. I spend more time doing “research” on how to feel better, than actually living life.
Current:
EBV Ab to viral capsid Ag, IgM: 600
EBV Ab to nuclear Ag, IgG: >600
Thank you!
Laura Zera says
Hello! Ugh, I know how it feels to “require so much maintenance” that it gets in the way of life. Lauricidin is the brand name — it’s apparently the first monolaurin product on the market, but who knows if that’s true. For me, the effects weren’t radical, but I felt less rundown after taking it and will still take a jar or two of it when I feel like my immune system needs help.
All best to you. I hope your flare calms down soon and you’re feeling better.
Lainer says
My Integrative Doctor gave me these protocols for reactivated EBV. I hope it helps others. Spread the word.
Integrative Doctor gave me this recipe and this protocol to put EBV back into remission. (Natural course VS toxic meds)
7 Garlic Cloves Crushed
2 TBSP Manuka Honey
1/2 Tsp Turmeric
2 TBSP Grated Ginger
1/2 Tsp Catenne Pepper
3 Cups Orange Juice
1/2 cup Lemon Juice
Mix well. Drink to boost your immune system. Take 3 to 4 times until symptoms are gone. Keep in BPA-Free container (Glass is best) Refrigerate.
The other protocol is a 14 day one
L-Lysine (500mg ea, 3X per day) Olive Leaf Capsule (500mg 1X day)
Day 1 2 Capsules 1 Capsule
Day 2 1 Capsule 2 Capsules
Day 3 2 Capsules 3 Capsules
Day 4 1 Capsule 4 Capsules
Day 5 2 Capsules 5 Capsules
Day 6 1 Capsule 6 Capsules
Day 7 2 Capsules 6 Capsules
Day 8 1 Capsule 6 Capsules
Day 9 2 Capsules 6 Capsules
Day 10 1 Capsule 5 Capsules
Day 11 2 Capsules 4 Capsules
Day 12 1 Capsule 3 Capsules
Day 13 2 Capsules 2 Capsules
Day 14 1 Capsule 1 Capsule
Maintenance for 1 month: 500mg each, 3X per day of L-Lysine and 1 Olive Leaf Cap
Can remain on this dosage to prevent HSV (Shingles or EBV Recurrence) This is also for a Shingles outbreak, not just EBV.
Laura Zera says
Thanks for the information!
Readers, please discuss this or any protocols with your practitioner before trying it. I’m only the messenger here.
Anna LaGreca says
Hi Laura-
I haven’t posted for a long time, but thought I would give everyone an update in case it is helpful to you on your journeys. I was diagnosed with CEBV a few years ago (it got really bad after I had my son). My functional doctor in Klamath Falls, OR, put me on an antiviral/anti-inflammation protocol that I posted in here at that time.
At that time, my doctor also had me take a lyme test. The results came back borderline positive, but my doctor there wanted me to focus on calming down the EBV first and do the EBV protocol. Doing that did make me feel a lot better, but definitely not completely “normal”.
I then moved to Colorado and found a great functional doctor here who then explained the lyme disease part of things to me. I guess a lot of people with chronic EBV also have lyme disease. Lyme disease causes your Killer T cells to not function properly, which then causes viruses that stay dormant in most people (EBV for example) to be able to rear their heads and make us miserable. Our immune systems can’t fight the viruses back properly.
So… the next step in my journey was to work on the lyme disease part. I tried an experimental treatment that has been surprisingly successful… Antabuse. It has strong antiviral/antibacterial properties. Lyme disease is caused by a bacteria (Borrelia burgdorferi ) that infiltrates your body. Traditional antibiotic treatments tend to fight the bacteria while you are taking them, but doesn’t completely get rid of it…. so once you stop taking the antibiotics, it comes back fairly quickly. So, I took the antabuse treatments from January of this year through March. I would have stayed on a bit longer but it was causign issues with my kidneys/liver (Note: if you try this, make sure you get regular liver/kidney function tests).
The reason I wanted to share all of this is because I have a sneaking suspicion that the correlation between lyme disease and CEBV is higher than most people realize and I am guessing a lot of people’s CEBV is caused by lyme disease. The antabuse treatment was REALLY hard for me (the die-off of the bacteria caused me to feel really horrible). However, I think it actually worked and (fingers crossed) may have cured me for the time being. I got my T cell counts tested prior to the treatment and after. Initially they were super low. After the treatment, they were in the normal range. So, it makes sense that my body would now be able to fight back viruses and other regular sicknesses that it wasn’t before. I started running again regularly and don’t get sick now every time my son brings home a new sickness.
I would recommend the antabuse treatment for lyme disease.. but just know that it’s a rough few months while you are on it. I am also taking low dose naltrexone, which I also think has helped.
Good luck to you all… it’s a long and frustrating road for sure.
ali says
was wondering if anyone knows what the below results mean?
EBV VCA IgM: <36 U/mL
EBV VCA IgG: 329 U/mL
IgG Ab EBV Nuclear Ag: 290 U/mL
I did have mono in 2000 and I am now struggling with Covid long haul and my doctor tested me to see if I have a reactivated EBV.
Tricia says
Hi, I’m late to this thread but it’s been the most helpful thing I can find about reactivated EBV.
I’m 60 yo and had mono 40 years ago. I have never felt right since mono. My PCP would run tests and I was always told I’m fine.
I recently went to see a Holistic doctor because I’ve become so rundown and sick. She ran the first EBV test I’ve had. These numbers are scary!
EBV Early Antigen D AB (IGG) came back at 150 U/ml
EBV Viral Capsid AG VCA AB (IGM) 102 U/ml
EBV Viral Capsid AG VCA (IGG) 750 U/ml
EBV Nuclear AG (EBNA) AB (IGG) 600 U/ml
Please let me know if anyone has ever seen numbers like this and if they know what they mean. I’m being treated with Lauricidine and high doses of Vitamin C but I’m not getting better.
I wish you all well. This is an awful thing to deal with.
Laura Zera says
Hi Tricia, I’m sorry to hear you’re dealing with this. The numbers can be scary; your holistic doctor should be able to interpret them for you. I think the main thing is to treat the symptoms that you have. I think I’ve written this somewhere before, but everyone seems to respond to EBV treatment differently, and what works for one person may not work for another. This is really a bummer, of course, because it takes time and money to trial different treatments. I wish you all the best and hope that you’re feeling better soon!