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Health

How to Get Tested for Reactivated Epstein-Barr (EBV)

How to Get Tested for Reactivated Epstein-Barr (EBV) + Why It’s So Confusing

Last week, I shared my story about how after years of feeling tired and treating my low thyroid condition, I discovered that my Epstein-Barr Virus (EBV) antibodies were showing a recent infection—even though it had been over 15 years since having mono as a teen. You can read that post here if you need a refresher.

Today I want to share more about the testing I’ve had over the last two years—plus, why it’s so confusing and frustrating for most people when they ask to be tested for reactivated Epstein-Barr.

First, the medical community is just waking up to the idea that we don’t just get mono once, and that the virus can cause issues for decades.

Previously, and still for some, doctors thought that:

  1. about 95% of the population will contract the virus at some point (still true),
  2. in some people it stays dormant forever (still true), and
  3. some people will get mono from it—but once the acute mono phase is over, there is still a belief that the virus will stay dormant (asleep) forever (this is not necessarily true)

In some cases, it will stay dormant forever after the acute mono phase. But in some people, like me and possibly you, the virus can cause issues throughout life. Again, you can read more about my low thyroid issues and EBV reactivation discovery on the first post in this series. But today I want to focus on testing.

Second, while some doctors and practitioners have long known that EBV can cause autoimmune symptoms or lead to conditions like Chronic Fatigue or Fibromyalgia, most have disregarded this idea. Since new information is still emerging about the virus and the long-term issues it can cause, there isn’t really a standardized test for it. And other practitioners hypothesize that there are actually multiple types of EBV, which makes it even more difficult to test for.

I first read the book The Medical Medium in 2016, and it peaked my curiosity as to why I’d been dealing with low thyroid issues since I was 18 (again, read more about that here.) I was intrigued enough to ask for an EBV test from my naturopath, but didn’t know what to specifically ask for so just got the test that she chose from her list of options. It was still a good test, as it indicated a “recent primary infection,” which was enough to understand that my immune system was still trying to fight the virus even though my acute mono phase had ended over 15 years before.

The health community uses the words “Reactivated Epstein-Barr” for this phenomenon, but I wonder if it ever really “deactivated” in the first place. I think a better word for it might be chronic, however, Chronic Active EBV is a specific diagnosis characterized by persistent infectious mononucleosis-like symptoms. There is a huge population that is living somewhere in between—the persistent infectious mononucleosis-like symptoms are gone, but you never fully recover.

Back to the testing.

I’m sharing these tests with you to show you why detecting long-term EBV issues is so confusing.

However, I feel positive that I at least know why I have periods of time when I feel so tired, because now I can do something about it. It’s also comforting to know what could have caused this thyroid issue. However, the testing is still confusing, and I’m still a little confused about it.

Also, please note that I’m sharing these tests with you just as a starting point. I’m not a doctor and these are just for reference.

My 1st Reactivated EBV Test

September 2016: Testing for Positive/Negative IGG and IGM antibodies.

Elizabeth Rider Epstein-Barr

The image above is my first recent EBV test in September 2016 (15 years after mono), indicating a positive result. My naturopath in Bozeman ordered this test, and to her surprise, it was positive! (Read more about that in my first post in this series.) On this test from Mayo, presence of VCA/IgM antibodies indicates recent primary infection. This was the first indicator that my body was still fighting the virus and was the point at which we started natural antivirals and treatments. Tests that show positive or negative results without values can be frustrating as it’s hard to gauge the severity of the situation, but at least it’s a start.

My 2nd Reactivated EBV Test

January 2017: Follow-up four months after the first test.

Elizabeth Rider Epstein-Barr

This test above was not that helpful and was ordered by mistake when my doctor thought she was ordering the same as the first one. We had tweaked my thyroid replacement dose, so I had to be tested a few months later. I asked her to test the EVB again to see if anything had changed. When the test came back, I realized it was a totally different test than the first.

She mentioned that she must have just checked a separate box, but this one was a good one, too. I don’t blame her or have any negative feelings about it, but looking back on it I should have asked for the other test again, because comparing two different tests isn’t very helpful. And after researching this test more, I realized that it didn’t tell us the entire picture—it says “None Detected” because it was testing something completely different. She told me that the natural antivirals must be working and to just keep doing what I was doing. I actually did feel a little better, but as you’ll see over the next year in the following tests, the antibodies that indicate a recent infection and that my body was still fighting the virus, were in fact, still there.

My 3rd Reactivated EBV Test

May 2017: Five months after the previous confusing test.

Elizabeth Rider Epstein-Barr

As you can see here, this test indicated the same as the first. When I got this one, my biggest question was, “Would this have shown the same thing in January?” This is why it’s so important to follow up and get the same test so you can do an accurate comparison.

My Most Recent Reactivated EBV Test

May 2018: This one actually has number values, not just just positive/negative results.

Elizabeth Rider Epstein-Barr

My previous tests were with my doctor in Montana. I recently moved to Seattle and started seeing a new naturopath. During my intake, she mentioned that she wanted to do an EBV test. As you can see on this test above, it only tested IgG, not IgM antibodies like tests one and three did. That confused me because high VCA/IgM antibodies indicate a recent primary infection. She said she now uses this test because it actually gives a value of the IgG antibodies, and over a certain number, it will indicate if your immune system is still trying to fight the virus. You can see from the result and reference range above that anything over 10.99 indicates a positive result, and mine was over 41.

I plan to keep up with the natural antivirals I take and continue to explore natural and alternative treatment options. You can read more about my treatment protocol in this post.

Are These EBV Tests Even Helpful?

Here’s the bottom line: EBV testing is still confusing for medical professionals, which makes it even more confusing for patients.

Remember that labs are always a snapshot in time, and it’s possible that different values can be detected at different times.

Even though EBV testing can be confusing, what’s important is to remember that regardless of what the results are, you can still take steps to feel better.

If you’ve had even one test that comes back positive, it will most likely be positive for a long time—possibly even for life. Since we still don’t know a lot about the virus, what’s most important is that you focus on feeling good and healing if you feel off, instead of focusing on the numbers on a piece of paper.

These tests are useful in the sense that you may suspect EBV, and seeing the result on paper might spur action to healing, but also remember that the virus can live so deep in your organs that the test might show negative, even when EBV is ultimately the issue.

You can start your healing protocol on your own even if you don’t have the test results yet.

How to Ask for a Reactivated Epstein-Barr Test

Find a naturopath, functional medicine specialist, or healthcare practitioner who is open to exploring the possibility of Epstein-Barr.

Do some research in your local area, and always ask the front desk when you call to make your appointment if the practitioner is open to testing for Epstein-Barr. I’ve found that naturopaths are always very open to this. The front desk can’t give you a consult over the phone, but they can at least provide information as to whether the doctor is open to testing for that sort of thing. You may have to call a few places since unfortunately some mainstream/”old-school” medical practices are not up to speed on this yet.

If I were starting over again with what I know now, I would specifically ask for the positive/negative VCA/IgM antibodies test (tests one and three above) and the EBV Early Antigen D (IgG) test (test four above), because both provided good information. If I recall, that first test was around $45 (on top of the cost of the visit), and I paid cash at the naturopath, so it wasn’t too out of reach.

Only your medical professional can guide you on this and will know what tests are available, so work with them to find the best testing option for you. I will say that I had to specifically ask for this and let her know that I was ok paying the $45 for her to order it. That’s not a price quote by the way, as I’m sure the charges vary by lab and area.

Is There a Better Test?

New technology is always becoming available, and I want to remind everyone that I’m a patient, not a doctor, so you’ll have to work with your medical professional on what tests are available and best for you. My doctors in Montana and Seattle are both amazing, but they did not have any further tests to conduct.

My doctor at Sanoviv specializes in functional medicine and wants to do a test called ELISpot the next time I visit her to understand if I have any co-infections and to understand the EBV more. ELISpot blood test is sent to Europe for analysis and it’s expensive; we would do it for research purposes because we’re both fascinated by it and I have the funds to do it. Since health is my profession, I’m willing to spend on the research, but I want you to know that you do not have to have expensive tests to start your healing. In fact, the results of that test will most likely not change my protocol, it will just scratch our itch to learn more about the virus.

How to Take Action:

1. Read the other posts in this series for more information:
Post #1: Is It Epstein-Barr Virus Reactivation?
Post #3: My Epstein-Barr Treatment & Natural Healing Protocol
Post #4: Update: Healing from Reactivated Epstein-Barr 
2. If you have an autoimmune condition or low thyroid and suspect reactivated Epstein-Barr, find a naturopath or doctor who specializes in functional medicine and ask for an EBV test. (See notes above about how to ask.)
3. Share your story with us in the comments below to help other people who are dealing with this. Have you had any testing, or do you plan to? What were your results?
4. Come back next week for the third post in this series to learn more about my natural treatment protocols. Since modern medicine really doesn’t know of any specific treatments for EBV, I’ll share the natural antivirals and protocols that my doctors have recommend in case they help you, too. You can subscribe to my newsletter here so you don’t miss it.
5. Stay positive!

It actually doesn’t matter that the testing can be confusing. You can still take charge of your own health. If you feel rundown or low in energy, stay hopeful. Living a healthy lifestyle and incorporating natural antivirals into your routine can help manage (and potentially even get rid of) the virus. I’ll continue to write more posts as I learn more (trust me, I’m typing as fast as I can). 😉 For now, check out posts 1, 2 and 4 (linked above).

Wishing You Well,

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  1. Stephanie

    August 22nd, 2018 at 3:07 pm

    When I read the Medical Medium book my jaw dropped. I felt the truth in that book about EBV! I had been bed ridden for a month when I was 15, and my mom always said I was never the same. And I haven’t, and right now I have been diagnosed with Mental Exhaustion and as a Holisitic Nutritionist, I have observed that I have all the symptoms of stage 4 Adrenal Fatique.
    After reading the book and hearing another woman’s story about getting tested again for it and clearing the symptoms I went to see my doctor (regular MP) to ask for the EPV test. She thought I was crazy because she said my EPV would be dormant. I don’t know if it is the same tests as you, as I don’t think it was, and she told me it came back negative, but I don’t feel that is totally correct.
    Thanks for sharing! I will seek out a functional practitioner willing to help me investigate!! I have been suffering for too long! ~ Steph

  2. Elizabeth Rider

    August 22nd, 2018 at 4:43 pm

    Stephanie, yes! Life it too short to suffer for so long. So many women share this same story. I’m glad you’ve read the book and plan to seek out a functional practitioner. Keep us posted! Sending you healthy vibes, ~E

  3. Leanne

    August 22nd, 2018 at 3:41 pm

    Thanks Elizabeth for sharing this info. I too was recently diagnosed as reactivated EBV. Thankfully I am working with great functional medicine practitioners, but it’s still frustrating. I would love a quick fix to get me back to feeling 100% right away, but realize this longer drawn out process is making me learn to take better care of myself. Look forward to hearing the suggestions you received and to see if they are different than what I was told.

  4. Elizabeth Rider

    August 22nd, 2018 at 4:38 pm

    Hi Leanne, I totally feel you on this. There aren’t any quick fixes, but there are things you can to do feel better. More coming in the next post. Wishing you well! ~E

  5. Zee

    August 22nd, 2018 at 5:09 pm

    Is this test only for people with low thyroid problems? My thyroid is normal, but most of the time I feel tired in the morning.

  6. Elizabeth Rider

    August 22nd, 2018 at 9:39 pm

    Hi Zee, great question. People can have EBV troubles and symptoms without thyroid issues, so it may be something you still want to check out. The book The Medical Medium has great info on this. ~E

  7. RLF

    August 22nd, 2018 at 8:33 pm

    Elizabeth, did you know that The Medical Medium published a book last November titled Thyroid Healing? You might want to look into it and see what you think.

  8. Elizabeth Rider

    August 23rd, 2018 at 3:22 pm

    Hi there! Yes, the Thyroid Healing book is great. I mention that one and another in my next post. 🙂

  9. Linda

    August 23rd, 2018 at 2:32 pm

    Dear Elizabeth,

    I also have low thyroid and EBV. I am seeing an Internal Medicine doctor who told me about Medical Medium and had me get his books. WOW! Makes sense. I am having a very difficult time with eating vegan. I like meat, fish. I really don’t like chicken or turkey, so that is a plus. I tried the 28 day diet, and can’t even go one week without cooking something. I know it is ok to cook, but it is better to eat raw. I have tried some of your recipes and love them! Thanks for the positive attitude! Such a help!

  10. Elizabeth Rider

    August 28th, 2018 at 6:09 pm

    Hi Linda! So glad you posted this comment. Raw isn’t always necessarily better. There isn’t one specific way that is best, not for one person and not for an entire lifetime. It’s common and natural to eat different ways in different seasons of the year and different seasons of life. Raw food has a ton of benefits, but don’t feel guilty for eating cooked foods! You don’t have to label your eating habits. I eat mostly vegan too but also incorporate eggs, fish, turkey and chicken because I feel better when I eat them. You don’t have to be 100% of a certain eating style. In fact, this is the premise of my book that’s coming out next year (Hay House 2019) 🙂 Glad that this post helped you, and glad to have you in our online community. ~E xo

  11. Linda

    September 12th, 2018 at 7:31 pm

    Hi Elizabeth! Linda here. I read your three blogs about EBV. I finally found my records.

    On 7/6/17 my test results said: EBV Early Antigen Ab, IgG 56.9 (should have been 0.0-8.9

    The EBV Ab VCA IgG was below 600, should have been 0.0-17.9
    EBV Nuclear Antigen Ab. IgG again, below 600 Should have been 0.0-17.9

    On 10/5/17:
    Early Antigen Ab, IgG 53.4

    The next two, like the previous readings were the same, below 600.

    When the doctor looked at this, he just said the tests are not always accurate but that I definitely had EBV.

    I am pretty sure I still do, and if you read the first Medical Medium book, I think I have stage 4, as I believe it is in my nerves. Lately my pain is better, but I know I am not 100% yet. I see the doctor on Friday and I am still on the same thyroid dose. I don’t feel like I am ready to lower it yet, unless I am dealing with liver issues as much as thyroid and EBV. I haven’t seen him for 9 months/ Anthony William had said that sometimes it can take up to year or more to see results when you begin to eat right for EBV. Thank you for your articles!!! I think there are many more people than we realize with the same issues. I am following Medical Medium protocol as much as I can. It makes sense to me that the way to kill the viruses is to take away their food supply.

    Linda

  12. Jen Ward

    September 18th, 2018 at 11:21 pm

    I am a Health Provider in Oregon (Acupuncturist, Health Coach, Ayurveda, Functional Medicine) and share a similar story to yours in my teens. In this decade after going through Chinese Medicine school (an oh so stressful time) and then getting bit by a tick a year later (and two other stressful events) things were never the same: weight gain, changing thyroid levels, unexplained nerve pain, etc.. etc.. Every provider, EVERY provider just wanted to treat my Thyroid… so I persisted to find the ROOT. It wasn’t until I read Thyroid Healing book that I started to think about EBV. So I finally got the results just TODAY: “It shows you have recurrent chronic epstein barr virus.”

    Excited to read your posts and begin implementing Thyroid Healing book recipes etc., up my Acupuncture visits, add more Herbals and take a long look at my work/life balance. I have been following you for quite some time (I am IIN Grad 2002) and I glad you are putting this information out there. As I educate myself I will continue to educate my patients. As a Health Professional it’s crazy what I had to go through and if it was tough for me to get to this place Doctor after Doctor with all this knowledge, it’s definitely tricky for the average person out there!

    Cheers, Jen W.

  13. Elizabeth Rider

    September 20th, 2018 at 9:33 pm

    Hi Jen! Thanks for sharing this, and grateful to have you in our online community. EBV is coming up more and more and modern medicine is just starting to learn more, so we’re all in the learning process together. My own functional medicine doctor just mentioned how modern doctors (even the progressive ones) are having to shift to thinking about EBV more like the way they look at chicken pox and shingles (that it can recur). They were all taught that everyone gets EBV and mono once and then it’s never an issue again. I just had an Elispot test (most sensitive available) and it confirmed the active EBV (I half expected it to be negative.) I’ll update the blog soon with more on that test—I’m still learning more. Again, thanks for being here! ~E

  14. Loren

    October 16th, 2018 at 2:22 pm

    Hi! Thanks for your post; I recently got a test with very similar results to yours, with a number value for my antibodies at 45. Did your doctor tell you that meant it was active? I’ve been sick but my doctor claims that is a normal number. Thank you!!!

  15. SAH_2018

    October 17th, 2018 at 5:10 pm

    Hi! Stumbled upon this trying to do some research. Just got lab results back from Dr yesterday diagnosis is active EPSTEIN-BARR virus. They tested EBV Early Antigen AB IGG and it came back at >150.00 (>10.99 is positive). Also tested EBV VCA IGG and it was >750.00 (positive is showing at >21.99). Looking for any advice to be pointed in the right direction. Only recommendation from Dr was to take FMLA and “sleep”. I’ve felt terrible for so long, there has to be something else out there that I can do. I just don’t know where to look. There is SOOO MUCH conflicting information online, I’m lost. Again, and advice, tips, literature, types of Drs to seek out, etc would be greatly appreciated

  16. Jacqueline Ledy

    October 24th, 2018 at 12:47 am

    Hi Everyone,

    A few months ago Epstein Barr Virus came up along with Cytomegalovirus, underactive thyroid and in pre-diabetic range. Also, I had a couple of cycsts on my ovaries and my testosterone is below normal range. I went to soooo many doctors the past 3 years, including sleep specialists, psychiatrists, Endocronologists, gynos, Autoimmune specialist, Accupuncturists, energy healers. I have tried soooo many diets most of my life, desperate to increase my energy and get rid of my brain fog, muscle soreness for no reason and other symptoms. I’ve always considered myself a healthy person. I don’t eat garbage and I work out. I take vitamins and herbs…

    I had mono at 15 and I started getting strep throat often for a few years after. I’m 37 now. I have been struggling with extreme fatigue since I was 15! I have been on and off Adderall, diet pills, loads of caffeine… any upper I can get my hands on to get me out of bed most of my life. No one had answers until now. I also would get Candida a lot, which is weird because I’ve always tried to avoid sugar (including fruit). I could go on and on and on about my struggles and how many things I’ve mess up or missed out on because I was too exhausted and felt like a vegetable.

    The only person who has given me any insight as to what is the cause of my symptoms and what the hell Epstein Barr Virus really is, is Anthony Williams (Medical Medium). I got off my thyroid medication I was taking for (5 months). I got off Adderall one week ago. I’ve adjusted my diet an a big way. Fruit is number one, followed by veggies. I’ve never had so much fruit in my life. I will never again do paleo, keto, bullet proof or any of the other diets. Please please please check him out. His Instagram. He has a podcast on SoundCloud. I’m still tired and I have a ways to go but I difenintelh feel a huge difference and I will be getting follow up blood work in the months to come. Epstein Barr wasn’t even mentioned to me by my primary physician! I double checked my own blood work. Make sure you have access to all of your blood work online or however. Also, (ladies) try to get female doctors. The men I’ve had are so absurd. I’ve been told to “ just work out more” when I can barely get out of bed. I’m 5’9, 120 lbs and I’m skinny fat but I’m not overweight. The thyroid medication made me loose weight (I went from 140-120) in a couple of months. Now I’m being told to eat potato chips for the sodium! Lol. So dumb. In my experience, women understand tiredness and will actually listen. I hope this helps someone. Check out Medical Medium

  17. Jaye

    November 8th, 2018 at 2:17 pm

    Thank you for your post Jacqueline. I couldn’t agree with you more re: Anthony William. What a godsend he has been with autoimmune issues and the only one that has ever made sense. His celery juice and heavy metal detox smoothie has turned my life around. I don’t bother with anyone else for advice and realise they are running on theories. The paleo/keto theory has been so detrimental to healing. Am waiting for the fallout in a few years from the keto diet. No consideration given to the liver in this diet. Am almost finished reading Liver Rescue. What a revelation.

  18. Rachel

    October 25th, 2018 at 11:48 pm

    This was a super insightful post!!! I had mono when I was in highschool and have never felt that I’ve recovered from it, so like you mentioned, I don’t feel it’s “reactivated “, rather that it never deactivated!! I’ve been bouncing between doctors for the past 5 years using “trial and error” to solve the symptoms that plague me (besides Epstein Barr I was also diagnosed with Hashimoto’s and Celiac disease) I have been eating AIP/Paleo for about 3 years and have to be very strict, otherwise I will have all kinds of reactions/symptoms.. :/ I am doing research on whether or not you can actually kill the Epstein Barr virus…as it almost seems it is something that stays with you for life, no matter what. I’m wondering jf the reason the virus is running rampant is due to a weakened immune systems inability to control and inhibit the virus.. So, I am curious if the key to focus on is not so much how to kill the virus but how to strengthen the immune system??…doing both simultaneously would be perfect! 😄 Have you done any research on ozone (autohemotherapy) or neural therapy ? Ive been researching them both and am curious what your thoughts are. Also, I also have been in contact with Sanoviv and have been seriously contemplating visiting them…. I’m just not sure if it is worth it…if they’ll truly be able to help me. I’ve tried so many things that haven’t worked …. putting so much time, money, and effort into something that doesn’t help is so frustrating and exhausting.. so, any insight would be sooooo incredibly helpful and forever appreciated!!!

    Xoxo
    Rachel

  19. Jaye

    November 8th, 2018 at 2:10 pm

    Hi Rachel
    Check out Anthony William’s work and his books. He is changing the world with his healing insights.. Hos Instagram page is filled with stories of autoimmune diseases and one healing story after another. Your paleo diet is not doing you any favours. As Anthony says these high protein diets are also high in fat and burdening the liver so it cannot help you heal or detox. It’s a trendy diet that has helped people only to a certain point because it cuts out processed foods but then the healing goes no further. Check out his Liver Rescue book. Its amazing.

  20. Laurie

    November 3rd, 2018 at 3:48 pm

    I was tested for EBV twice in two years, and the results are always the sane. IGM negative, but IGG for early antigen 150, capsid 750, nuclear 600. My doctor thinks this is a good thing?!?! I also have anaplasmosis, mycoplasma, off thyroid levels but always barely in range. Adrenal fatigue, DHE A & testosterone very elevated. An I crazy thinking the EBV numbers are way too high? Thanks!

  21. Marcia Peers

    November 6th, 2018 at 12:42 pm

    I have EBV. I live in a Small, Rural Farming Community in Far, NE Nebraska where there is only Primary Doctors!! They have No Idea what to do with me!! EBV Ruptured my Spleen. I was Misdiagnosed as having Constipation in the ER. I was Screaming in Pain, Coded 3 Times, Air Lifted to a Trauma Center and had a Spleenectomy. THERE,,, Problem Solved!!!! Only it is Still Killing me slowly!!! They have No Idea what to do. I am 59. I am very Ill, #108 which is very Low for me!! When is IT Enough?? I Can’t go on living like this.

  22. Jaye

    November 8th, 2018 at 2:02 pm

    Marcia have you checked out the work of Anthony William’s? His first book has helped so many friends of mine with EBV and his new book out called Liver Rescue is amazing. He has a 9 day sage detox for the liver and supplement dosages if you have a viral liver issue which most of us with EBV have. Check out his medical medium Instagram page and all the healing testimonials. All the best on your healing journey.

  23. Big Red

    November 10th, 2018 at 7:16 pm

    I have recently tested positive for chronic active ebv. I have not been well for over five years, not able to work for the last four. I have gone the rounds of doctors, both medical and allopathic. How could I have gone so long without an accurate diagnosis? I had been told more than once that it was anxiety (which I knew it was not).
    I eat organic and live a clean lifestyle. Over the last few months, I had felt as though I had improved and was functioning at 80% of my former health level, but I could not seem to break through; it was as if something was blocking my healing. Then my health again took a nosedive. I needed to start striking conditions off of a long list of possibilities and asked my GP to test me for EVB (It just happened to be the top of my list.) She ran all three tests and the results were all positive and very high.
    I have been thrilled to learn of this diagnosis and am so relieved to learn there is hope that I may feel good again. I am currently learning all I can about a virus, until two weeks ago, I never knew I had.
    Thank you for your guidance.

  24. Denise I Pierce

    November 13th, 2018 at 2:40 am

    I have almost the same history as yours. I am also from Montana. I am just beginning the journey to finding a doctor that will listen. I believe I am right now struggling with reactivated EBV. My last reactivation was in 2016 and I had Mono when I was 17. My VCA IgG levels were 497 in 2016 and 278 now, VCA IgM was negative on both, Nuclear IgG 98 in 2016 and 103 now, and the Early D IgG was 33 in 2016 and 36.9 now. I have low level symptoms this time so far but in 2016 I was barely able to function. Any suggestions?

  25. Denise I Pierce

    November 13th, 2018 at 2:57 am

    I also am hypothyroid, and have RA and OA.

  26. Brigid Filmer

    November 15th, 2018 at 6:11 pm

    Thank you for these posts! I just got my lab results back and my EBV VCA IgG number came back as 214. I too got mono at 18 in college and never felt the same again. After the freshman mono, I would get horrible throat infections at the end of every semester. They would get so bad that I would end up in the college infirmary. My parents would have to come pick me up and load me in the car to get home for the winter/summer break. My grandfather was a pediatrician so he would prescribe antibiotics ALL THE TIME! Over the years the throat infections slowed down but I never had any energy. I was a personal trainer for few years after college. I remember feeling exhausted everyday even though I was exercising and eating healthy. If I had 20 min between clients I would find a quiet place to lay down and nap. I would take 2 to 4 naps a day. Skip to my 40’s, married, two young girls and my thyroid becomes a mess. So here I am, now on an antidepressant, anti anxiety, T4, T3 and oral hydrocortisone for my non existent adrenal glands. I am so glad that I took this test and am now scheduled with a naturopath and nutritionist to come up with a plan. I bought the book you recommended and will for sure look at your protocol. I think I was confused that it could ever be EBV because sometimes I would have ok energy to live life. It makes sense now how symptoms come and go. It also probably explains why I got shingles at 38 years old and why I get a cold sore every time I exercise. Thanks for your time and effort writing your story. It is obviously been very helpful!

  27. Jessica

    November 17th, 2018 at 11:44 am

    Hi Elizabeth,thanks for the info I’m actually planning to go for a test I’m super exhausted regardless of what I do to rest,my thyroid levels are normal except for the antibodies which are not so bad. I hope I get answers it’s frustrating to always be tired.my vitamin levels are also fine so I’m suspecting ebv or sleep apnea.stay blessed

  28. Emily

    November 21st, 2018 at 4:55 pm

    Hi Liz!

    Thanks for sharing your health journey with low thyroid and EBV! I’ve recently been tested here in Canada and found out that I have EBV reactivation. I didn’t recall even ever having mono but this new information makes so much sense – I’ve been dealing with severe mono like symptoms for well over a decade! I appreciate you sharing all the testing options and your protocols! I feel extremely fortunate to have all of your experience and protocols as a reference! Thanks again for sharing and for all the support!

  29. Kate

    December 24th, 2018 at 2:35 pm

    Hi, where in Canada and which test did u get done?

  30. Sarah Ventola

    December 4th, 2018 at 3:41 am

    Hi. I live in Seattle and am struggling with many symptoms of EBV and believe it is now in my central nervous system. I have implemented a clean eating and supplements protocol per Anthony William but need some medical support at this point. Would you be willing to share the name of your naturopath in Seattle? The one I am seeing is not open to EBV and is not trying to help my new symptoms. Thank you for sharing your story it is so helpful!!!

  31. Erika Gibson

    December 10th, 2018 at 4:15 am

    I have cried several times reading your story. It felt as if you were telling my story. In 1995 I was taken to Texas Children’s Hospital by ambulance for severe infection of mononucleosis, strep and tonsillitis concurrently. I was 16. I also contracted hep b while in hospital. I was a very sick young girl. I too didn’t get it from kissing boys, but by stupidly drinking after a friend who had just “recovered” from mononucleosis a week or two earlier. Had I known that ONE terrible decision would effect the rest of my life I would have most certainly resisted taking that sip! I too never got over the symptoms of mono and was in and out of doctors offices all the time for strep and tonsillitis. I honestly don’t know how I ever even graduated. But I did. At 19 I had a tonsillectomy. At 22 I had an appendectomy. Life went on and I had all but forgotten what “normal” was supposed to feel like anymore. My normal was as good as it was gonna get. By 28 new symptoms were emerging and I was losing lots of hair, gaining weight and constipated for the first time in my life. At my mother’s suggestion, I saw an endocrinologist and was diagnosed with Hashimotos when I was 29. I too was astounded that my body was attacking itself! Started thyroid medicine and symptoms somewhat improved but never fully go away. In 2011 my gallbladder was removed while I was 7 months pregnant. In 2013 I had pancreatitis with my second pregnancy. In 2017 I convinced my endo to let me try Armour. So far that has been the best medicine to treat the Hashimotos with the most “diminished” symptoms. Hey, I’ll take any positive that I can get.. this journey has been exhausting and obviously never-ending. This past June I suffered a graphic loss through miscarriage at the age of 39. After that loss, I discovered that at almost 4 months later I was still (and had been the whole time) suffering from chronic pancreatitis once again brought on by pregnancy. Although this loss was very painful, it has certainly provided some long lost answers to my many questions about my health problems and journey. Thus leading me here to learn about this EBV thing that has obviously been wreaking havoc in my body for the last 23 years. For the first time I finally have a explanation that makes sense! I can hardly wait to find a doctor to test me for this. Finally after so many years, I’m finally onto something big here. I hope and pray I can once and for all find the true healing that I’ve been desperately searching for. Thank you so much for sharing your story and journey. Xoxo

  32. Elizabeth Rider

    December 10th, 2018 at 9:12 pm

    Hi Erika, thanks for sharing your story with us. I know it can feel frustrating, but keep believing in yourself and continue to research and work towards feeling better. I wish you tons of healing! ~E

  33. Des

    January 22nd, 2019 at 3:43 am

    Thanks so much for sharing pieces of your journey. Just got the ELISA EBV testing done and am anxious to get it back. How’s your journey going? Have you retested your IgG to see if the levels have come down at all? Are you also following the medical medium celery juice “protocol” ha, don’t know what to call it.

  34. Elizabeth Rider

    January 22nd, 2019 at 6:37 pm

    Hi Des, I had an EliSpot EBV test a few months ago and plan to write the 4th post in this series soon! I’m feeling pretty good these days but my body is still actively fighting the virus. I haven’t completed the full protocol yet but plan to. Stay on my email list for updates 🙂 ~E

  35. Kat

    January 23rd, 2019 at 2:55 am

    Hi there. I can so relate to your story. I had mono twice when I was young. The second time was very severe and was in the hospital with it. In the past month I think I have reactivated Epstein-Barr. My doctor ran blood work including the mono test. Which came back negative. Is this different that the reactivated EBV rest? I’m trying to navigate this but it’s extremely difficult and just want to feel better.

  36. Taylor

    January 23rd, 2019 at 10:40 pm

    I think this article is great – I’m sending it to a patient who is just starting working with me (who has both CFS and we detected EBV) to just show that this is quite mysterious, and the point is to keep working on it. I think it shows that first off, no practitioner has this “figured out”, everyone is different but it’s important to test, re-test (the same values), and continue working on the root cause.

    I will mention that for ME working with people (everyone practices differently of course) I like to see the IgG markers more than the IgM, because it shows more of that “chronic” activation. Examples:

    EBV Ab VCA and/or EBV Nuclear Antigen, both IgG.

    But great blog, great post, great site, great job keep it up!!!!

  37. Elizabeth Rider

    February 13th, 2019 at 4:40 pm

    Hi Taylor (Dr. Taylor?), Thanks for your comment and kind words. My MD agrees with you and prefers to look at the IgM, but there’s so much confusion even around testing that I mention both since that’s what some practitioners have ordered for me. Glad to have you here! I always appreciate input and comments—we all need as much info as we can get. ~E

  38. Sherry

    February 12th, 2019 at 1:56 am

    Thank you for the information on EBV I have had it for 11 months now. Started having Tremors about 3 months ago. My thyroid is also been found low too. But I am so tired and I am 59 years old. Ready to be well. I want to get well🙏🏻 Will be seeing a Neurologist for the Tremors in March.

  39. Tracy Gaschler

    February 21st, 2019 at 6:52 pm

    What natural anti virals are you taking?

  40. Elizabeth Rider

    February 21st, 2019 at 7:01 pm

    Hi Tracy, you can read about everything I take in the 3rd post in this series, it’s linked above. (My comments don’t allow links so I can’t link it here, but go back up to the post and find post 3 called “My Epstein-Barr Treatment & Natural Healing Protocol” ~E

  41. Tina

    February 25th, 2019 at 6:52 pm

    Hello Elizabeth-

    Please help if you can. I was told I have Chronic Active Epstein Barr, and from my research it appears to be a very grim diagnosis. I’m looking for answers and a way to prove this wrong. My labs last week-

    EBV Early ANTIGEN Ab, IgG >150.0 (positive shows as >10.9)
    EBV Ab VCA, IgG >600.0 (positive shows as >21.9)
    EBV Nuclear Antigen Ab, IgG >600.0 (positive shows as >21.9)

    Also, thank you for sharing your wisdom. I’ve purchased the supplements you recommend in hopes of slamming this virus back down.

    Thank you!

  42. Elizabeth Rider

    February 25th, 2019 at 7:37 pm

    Hi Tina, I’m not a physician so I don’t give people feedback on their numbers. I recommend that you continue to work with your healthcare professional and continue to do your own research (we are always our own best health advocates!). I also recommend the book The Medical Medium and finding a naturopathic physician or medical doctor who specializes in functional medicine. Wishing you well! ~E

  43. Heather Hatch

    April 30th, 2019 at 1:01 am

    Tina –
    Chronic active Epstein-Barr means different things to different providers. The official diagnosis of CAEBV is grim, as you have found. I don’t hunk your labs necessarily mean you have that syndrome. I am a pharmacist, trained at a tertiary-care hospital and have also been trying to wade through what role if any EBV has in my recurrent symptoms. ANYWAY, if you read the studies that have been published on CAEBV out of the NIH in Maryland, you will find that they say some antibodies can be elevated in some patients for years after an infection – even acute phase antibodies that were typically considered to indicate a very recent infection. Those researchers ensures their patients had CAEBV by doing a Quantitative Epstein Barr Virus DNA PCR. Essentially the labs you have had snow your body has been exposed to EBV at some point and mounted an immune response. Only by checking for the EBV DNA in your blood can you know if EBV is actually active and replicating in your system. I would recommend asking your doctor for EBV DNA by PCR as it is more specific than just presence of antibodies.

  44. Jayne

    March 7th, 2019 at 10:51 pm

    Hi Totally interested Im.doing Anthony Williams Life changing Food book.. an it’s saving my life..I have now realized I’ve had chronic Ebv whole life bad after 30 an new strains too. I have bern thru so much I could right a book lol I researched 9 countries an then also find medical medium an he really put it all together..Its out now China realizes 7 cancers from ebv.I have had non Hodgkin’s.so much more an its all right there in his 4 books.my whole life an friends an family.!! .Its so true like research says we r in a 95% epidemic of Ebv Strains..other countries it’s even worse an kids die at 5 or younger from ebv….Grants are flying out for race to vaccine that won’t work Its the right foods that will save us eaten all the time…..Beat it ebv strep etc down into a hiding remission…Just in 10 months flowing Anthony’s books.I stopped 13 years of immune infusions.an I’m.fighting off colds etc too.my blood pressure went from.sky high too perfect 127/ 70….. ..16lbs melted off no extra exercise..ebv was so bad I was so sick.. hair loss .u name it I had it.plus strep an shingles too.now 138lb. Not bloated ..way better ..healing first time in 30 years.I had given up.alot of food after cancer..an I believe thru recent years gots others ebv strains….strep…more people need to gasps it’s serious..I totally get it now..I see the whole picture..I wish I love an healing to you….Im going to continue to follow Life Changing Foods..its truly saving millions..totally get used to celery juice!! Lol

  45. Angela

    March 27th, 2019 at 6:50 pm

    I was diagnosed with mono in college in the late ’80s. I didn’t know anyone who had it. I had been feeling really bad and run down for quite a while and had been “powering through,” not knowing what was wrong, and my doctor suspected that made my case much worse. I was diagnosed over Christmas break and had to drop out for the spring semester. I spent about three months housebound, feeling awful, having zero energy. Just getting out of bed and getting dressed wore me out. I was convinced I must have lymphoma or something worse than mono, I was so sick for so long.

    I eventually, gradually began to feel better, but I’ve struggled with other issues that I think are related to EBV ever since. I was diagnosed with IBS and TMJ in college. In my early 30s I got my first autoimmune diagnosis of ulcerative colitis. I was very sick for the first couple of years until I learned how to manage my UC. In my early 40s I was diagnosed with Raynaud’s and, now in my early 50s, Mixed Connective Tissue Disease – all autoimmune conditions. I am using the Autoimmune Protocol diet, along with anti-inflammatory supplements to control my symptoms.

  46. Randi Bufalini

    April 25th, 2019 at 6:25 pm

    I recently got a bad case of Vertigo and since I had taken a minor fall in my home, my ENT doctor told me that crystals in the ear get misplaced in a fall and that is causing this awful feeling. This has been since last September and I started therapy to get them back in place. I will cut to the chase. New therapy at new place did tests and it is not the crystals and when he found out I have not felt good for years and I was diagnosed with EBV, he said that alone can cause my ear problems. I looked for my old test results,( which no DR.could ever tell me what they meant,except don’t worry,it is not the cause all my symptons,I have had for over 25 yrs. Found only one old Lab from 2014 and had you test #3 done. EBV Early Antigen ab, IgG, Like you said normal is Less than 9.0 and mine was 120. This is not the only out of range test I have had done ,just can’t find them.
    Would a test result of 120 cause me to feel as Sh ty, as I hve felt all these yeaes and this test was done in 2014.
    Just knowing that it could would make me feel beer, knowing someone( you) believes this is the reason
    Thanks,
    Randi

  47. Heather Hatch

    April 30th, 2019 at 3:16 am

    Elizabeth! I’ve found your posts very interesting. I’ve had almost an inverse route from you, blaming my symptoms on EBV for years and recently coming around to the conclusion that it’s a thyroid problem. 🤣. I had mono at 15years. Like a lot of people in these comments, it lasted much longer than most, at least 4 months. And even after that, it was June and I tried to run with the cross country team but couldn’t because I would get short of breath, so fatigued, and my muscles didn’t seem to cooperate. I think now that those were my first hypothyroid symptoms. Things were mostly ok until 2013 at age 28 I began having recurrent episodes of extreme fatigue, which it sounds like you have. They felt like mono. On the first one my internal med doc got my EBV antibodies and like you, I had very high acute phase antibodies (IgM). So she assumed I’d had a recurrence. Well, this has continued to happen once per year and the total episode lasts 3-4months before I’m totally back to normal. Fatigue is followed by extreme muscle weakness, shortness of breath, exercise intolerance (whereas I’m usually very active and exercising 4-5x per week for an hour). I’m also cold all the time. This winter our thermostat was at 68-69 overnight and I had to sleep with a heating pad, wool socks, sweat pants, two shirts and a sweatshirt, and 5-6 layers of very thick blankets (micro plush or quilts). ANYWAY every year she checks the standard stuff to make sure everything’s fine, and also EBV antibody panels, which continue to show high acute phase antibodies. Well this year I did some more research and there is more out about EBV than there was 5 years ago. I read some medical articles from EBV experts at NIH in Maryland. They said that although rare, some people can have elevated acute-phase antibodies for years after an infection, so they don’t trust those labs alone to qualify someone as having chronic EBV. They verify through finding the actual viral DNA in your blood. Quantitative EBV DNA by PCR. That was your second test. This is much more specific than the antibody tests. And if I were you, I would definitely get it again next time you think you have a reactivation ain’t with your antibody levels so you can know for certain if you actually have replicating EBV during your episodes or if your acute phase antibody titres are just elevated for a prolonged period. I had my doc order that this year, and it was negative!! Now unfortunately for me I still don’t have a full picture, because I had been taking Valtrex for a month prior to the test. (PS: Your first post said western med has no treatments for EBV, but since it is in the herpes virus family, it can be treated with Valtrex. There are medical studies showing it decreases EBV DNA in patients with first-time mono. I started taking it with my episodes a couple years ago). I wish I had gotten the EBV DNA PCR done at first sign of symptoms, because then I would know once and for all if it has any role, but now I’m not quite sure if it was negative because it was never the cause of my most recent episode, or if it was obliterated by the Valtrex. I was still having symptoms though, but I also understand there are post-viral syndromes even after a virus has been cleared. So who knows. I suppose if it happens again next year I can do the EBV DNA test right off the bat. As a note, the medically-defined CAEBV is a very serious syndrome and apparently does not respond to antivirals like Valtrex. I wonder like you if there is some middle-road chronic infection that has not yet been defined by the medical community. ANYWAY this year I decided to see a new doc. He’s an MD, but a sports med doc and into functional medicine. I told him about my episodes every year. In addition to fatigue, muscle weakness, SOB, cold intolerance, and exercise intolerance. also have dizziness when I stand up sometimes, and some numbness and tingling in my fingers. He said I have a thyroid problem my MD has been missing for six years. He sent me for more comprehensive thyroid labs and said he’d be treating me no matter what to have a trial of thyroid hormone. He feels that standard lab ranges for TSH and even free T4 and free T3 are too wide and people have a lot of improvement if they are treated to the upper 25%ile of thyroid hormone levels. So, that’s where I am. I’m going to be starting thyroid hormone this week after my next visit with him. I’m curious if you would answer a couple questions for me, to clarify some things, since we are on this parallel path of EBV vs thyroid: 1. You said you never responded to thyroid treatment that great, which is why you pursued looking into EBV. Were you taking thyroid hormone or just natural treatments? Were you taking T4 AND T3, or just T4? As a pharmacist I heard patients say a lot they never felt the same on T4 only and my new doc says the same, you have to give both and push the dose until people feel better, which is often to the very top end of normal. So that may be something to consider if you are still optimizing your treatments. I wonder if EBV caused hypothyroid or perhaps the reason some us took so long to get over mono compared to others is that we already had a low level thyroid problem that was unmasked by the viral illness.

    Thanks for the post. It’s interesting to read someone else’s journey and try to learn from each other. EBV definitely needs more research by the mainstream medical community.

  48. TC

    May 6th, 2019 at 8:39 pm

    Thank you so much for this blog and info. It’s easy to understand. I came across it when I was trying to find out what my EBV results mean. I also have low thyroid functuon and I figured it was all connected. Looks like I have a lot of info and books to read to figure it all out. Thanks again.

  49. Elizabeth

    August 30th, 2019 at 5:18 pm

    I just got blood work done and ALL EBV numbers were negative (IGM, Early IGg, and EBNA IGg) EXCEPT the VCA IGg, which was 25, over 21.9 is positive.

    My thyroid numbers are good, no sings of autoimmunity. All my bloodwork was great except this one single slightly positive number. Weird. What’s that even mean? Does it mean I’ve been exposed to EBV but I’m handling it well? My DOM gave me an herbal product, which I’ll use. Just wondering how aggressive I need to go after EBV. Thanks!

  50. Jenny Jones

    September 20th, 2019 at 3:44 am

    Here are my test results. I am waiting to see the infectious disease doctor next week to find out exactly what is going on. The only thing my primary care doctor could tell me is I tested positive for ebv.

    EBV AB VCA, IGM 150.0
    Standard 0.0-8.9

    EBV Ab VCA, IgG 292.0
    Standard 0.0-17.9

    EBV Nuclear Antigen Ab, IgG 77.2
    Standard 0.0 -17.9

    I have been getting sick with sinus problems, achy weak muscles, fatigue, sore throat, hoarseness, headaches, pain/swelling in hands and fingers, puffy eyes, brain fog, forgetfulness, dizziness, trouble sleeping, blurry vision, gerd, swelling in neck, and excessive thirst. This has been going on for almost 5 years and I finally saw a doctor that broadened the scope of what to test for. Hopefully I can get some answers and some relief. I hardly have any days now when I feel good.

  51. John

    November 24th, 2019 at 4:15 pm

    Just an FYI. You can order your own labs and research your results. Doctors aren’t worth the money especially if you don’t have it and this is something for which there is no cure.

    No links but any accredited site that works with LabCorp is good. It’s the same exact people who do labs for hospitals and doctors. You order online then walk in at your convenience. You can choose the test you want, Elizabeth. The one you prefer is $140.

    As someone who has been seen every 2-4 weeks for decades by doctors, I’ve learned a lot about medicine.
    I suggest a basic blood panel first. Why? It’s cheap and rules out other or co-existing factors. If you have any type of infection your white blood cell count will be elevated. Depending on the one you order, it can screen how your thyroid is functioning and show vitamin deficiencies or detect diabetes.

    If someone then chooses to have EBV confirmed as the culprit after ruling out other issues, they can pay the $140 and take it to their provider. Mine were shocked and felt threatened that I don’t need them to get the lab tests I want. For many skeptical doctors (like the one who first tested me for EBV after a shouting match over whether it was real) putting test results in their hands is the evidence they need.

    Most doctors are prohibited from ordering extensive or expensive tests like this as a matter of policy. They can’t cure or even treat EBV so it’s an unnecessary expense.

  52. Bob

    December 4th, 2019 at 8:02 pm

    Hi Elizabeth, Sorry to read what you are going through. I tested positive, again just as recent as today, twice before in 2008 and then a DNA test back in 2009 showed that I had not even a trace of EBV. Have you been tested for Lyme?

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