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

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This is the second post in my Epstein-Barr (EBV) series. You’ll see the progression of my EBV tests and learn what to ask for if you want to get similar tests.

EBV Testing

Why Epstein-Barr Testing It’s So Confusing

Before you read this post, 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—if you want to read more of my backstory.

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.

Old-school Western Medical Doctors used to think that:

  1. About 95% of the population will contract the Epstein-Barr 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 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 Epstein-Barr Antibody 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. Subscribe to my newsletter below this post get your first free ebook and make sure you never miss an EBV update.

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). 😉

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  1. Heather says:

    My story is slightly different from most because I had a severe case of mono at age 50. That was 17 years ago, and I have never really recovered. My thyroid bottomed out, I gained and lost large amounts of weight over and over, I have chronic fatigue and migraines, and my joints deteriorated (5 back surgeries and 1 neck disk replaced). For 9 years I could not drive and for 12 years could not walk without walking sticks. I have a pure diet, many natural remedies, walk as much as possible, stretch every day, and have started Qigong and herbals to counter Lyme and other virals, per Dr. Bill Rawls. I asked my dr. for labs to check for reactivation since my energy is very low, but he said they were normal. Results: VCA-IgM antibody was less than 36.0 (range less than 35.9); VCA IgG 600+ (range 0-17.0); EA-D was 10.4 (range 0-8.9); and EBNA IgG was 49.4 (range 0-17.9). Any input would be most appreciated. Sorry that so many others are suffering but also glad that I am not alone.

  2. I am grateful to find your blog and support. I was diagnosed in 2015 & 2016 with a host of autoimmune diseases. Primarily Lupus, Rheumatoid Arthritis, and Sjrogrens. After Covid, I have never really felt well. Many bouts of extreme fatigue and uncontrollable pain, and more days of feeling worse than feeling just so so. Here are my results from my EBV tests, the only ones I have due to no one requiring them to be done and me not demanding they do them. I would like to get some input on what you think by these results. Due to my elevated liver enzymes and the chronic symptoms I have had over the past 3yrs, the nurse practitioner is stating that she believes this is a chronic form of EBV. I am hoping to find a doctor or naturopath to give me a second opinion, but in my neck of the woods there are not very many to chose from, if any. Please let me know what you think or if anyone else would like to comment, please do. I know this would not be in lieu of my physician, however I would like to hear what everyone else thinks. Thanks in advance. Namaste!

    EBV Ab IgG to Capsid 442.0(H)
    Negative 21.9
    Reference Range 0.0-17.9 u/ml

    EBV Ab IgM to Capsid < 36.0 (Negative)
    Negative < 36.0
    Reference Range 0.0 – 35.9 u/ml

    EBV Nuclear Antigen Ab IgG 339.0 (H)
    Negative 21.9
    Reference Range 0.0 – 17.9 u/ml

    • Dadrianne White says:

      Just FYI my EBV Ab IgG is 442,
      My EBV Ab IgM is negative,
      My EBV Nuclear Antigen Ab IgG is 336. I re-read my comment and thought I should clarify this. Have a blessed evening.

  3. Jane Freeman says:

    Hi Elizabeth, so I am a firm believer in integrative medicine and use as much natural care as I can, with a lot of investigation within my issues as well. My concern today is my 5 year old granddaughter who had mono within the last year. She’s having reoccurring, ‘unexplained’ (by her regular pediatricians) viral type flair ups. She goes thru stages of serious fatigue or lethargy, and/or fever, etc., when she simply overdoes it (which is often for a 5 year old). Her mother and I are convinced its the mono of the past rearing it’s ugly head, and her pediatricians look at us like aliens when we bring it up. I do not want her to go thru years of this if we can get a protocol together now before she ends up dealing with other chronic issues. Do you know if child testing or protocols in your experience? And can you send some referrals or links please?! I am calling a couple of contacts I have for integrative/naturopath medicine once the Christmas weekend has passed. Thank you.

    • Kami says:

      Hi, I had a bad case of mono when I was 3 and never fully recovered. I would fall asleep everywhere and just never felt good. In my teens and 20’s I would have “episodes” when my glands would swell, my throat hurt, headache, couldn’t turn my head and doctors would tell me mono but then say it was impossible since I already had it. I went into a 25 year remission only to have a very traumatic injury and long covid reactivate it. Your grand daughter sounds a lot like 50+ years ago. You can order the ebv antibody blood tests online and have the draw done at Quest or LabCorp, that will give you a better picture. You want to be sure to also order the Early Antigen test as that tells you if there a recent infection or reactivation. Good luck. Get a handle on lt now. I’m 54 years into this.

    • Amanda says:

      Trying to figure out my current issues, and came across your experience so ty for sharing. My VCA IGM came back negative. It shows positive for EBV early antigen test, VCA IGG and EBNA IGG. I had mono 22 years ago so unsure if my current issues are related. One of the many tests I took that wasn’t neg.

      • CR says:

        I am dealing with the same thing and my levels for all but the IGM have remained high for the last 1.5 years now and am not sure where to go from here at this point 🙁

  4. Emily Hagedorn says:

    Hey Elizabeth! I came back here because I am currently dealing with the same issue and remembered you writing these posts. You and I had mono in junior high at the same time. I remember. It seems like more than a coincidence that it is affecting both of us, so similarly, all these years later. I’m going to work on implementing your protocol and see how it may help. I just wanted to let you know, since I’m sure our original mono cases were likely linked.

    • Hi Emily, nice to see your name here 🙂 I’m sorry to hear that you’re going through this. Stay strong and healthy! ~E

      • Valerie says:

        I don’t recall having mono in my youth. As an adult, I’d have periods of unexplained extreme fatigue. My doctor could never explain it. Then when I was 47, I had 6 weeks of unexplained crushing fatigue. Again, doctor couldn’t explain it. I went to every specialist I could think of and none of them found anything wrong with me. Yet I had crushing fatigue. It would come and go for months at a time. Finally a year later while it was extreme I saw an allergist. She suggested I get tested for EBV. There was one test that was said to specifically test for a current infection which I don’t see mentioned here. It was the EBV PCR Quant(Whole Blood). That was positive, but the lowest level positive. It seemed to indicate that I was fighting a current infection. The following antibodies were also high –
        EBV Ab VCA, IgM
        EBV Ab VCA, IgG
        EBV Nuclear Antigen Ab, IgG

        I retested a few month later. The EBV PCR Quant was then negative. The other 3 still high. Then tested again 3.5 months after that, the EBV PCR Quant was still negative and the 3 others still high.

        The weird thing is, when seeing my primary care physician, my white blood cells were never elevated, which I would think would mean I was not fighting an infection. Can your white blood cells not be elevated, but still be fighting EBV? I don’t have any of the other symptoms of EBV other than crushing fatigue.

  5. Deborah Harris says:

    For those with providers who will not order the labs, you can go on and order your own labs. You would need a labcorp or quest facility near you. Worth it for peace of mind. Super easy, I’ve used labcorp many times. The money you spend is likely out of pocket, but you could try submitting the receipts to your insurance company for reimbursement.

  6. Rachael says:

    Too funny. I’m from Bozeman, now living in Seattle! I’m at the beginning of my EBV journey- testing positive for a reactivation last week. I also see a naturopath and ARNP at the same holistic clinic, and I meet with my naturopath Monday to talk treatment of symptoms.

    It’s a lot at once. But I feel relief, as I’ve had so many ‘symptoms’ these last couple of years. There’s a glimmer of hope now… Maybe, I can put this virus back to sleep and get my life back.

    Happy to have found your blog!
    GO Bobcats!!

  7. Julie Mulder says:

    Hi, I am better but still in extreme inflammation, pain and fatigue. Started just after V injection. My spinal cord and sculp hurts so much. Now and then feel my spleen is also sore. Lots of issues, to much to type and also believed it has to do with EBV reactivated. In S Africa it’s almost impossible to find doctors that really and truly are in the profession about healing a I’ll patient. I pray recovery to us all.

  8. Terri says:

    More specific with test results:
    EBV Ab VCA, IGM= Negative, less than 36

    EBV Ab VCA, IGG= Positive (202, cut off is 17)

    EBV nuclear antigen Ab, IGG=Positive (52.3, cut off 17.9)

  9. Terri says:

    I had mono 31 years ago. I’m disabled with recurrent meningitis and painful polyneuropathy. My IGM has been negative since my first occurrence but my IGG is, and has been extremely high ever since. The cut off is 17 I believe, and mine are at 202. Is this significant in contributing to how I feel in conjunction with my other conditions, which is quite unwell? All my doctors say is I don’t have mono it just means that I did. But that’s pretty high for 31yrs I personally think.

  10. Amy says:

    I have been struggling with symptoms for years. I recently had my EBV labs drawn. My EBV EA(D) is 38.8, EBV VCA IGG is 259 and EBV nuclear antigen IGG is > 600. I now know why I feel horrible. I had mono at 16-17 and I am now 48.

  11. Elizabeth says:

    Thank you for this detailed information in all your posts. I have had EBV 6 times (over 20 years) and starting to feel like I am going crazy because I am getting no answers. I think I need to switch to a naturopath. The only answers I have gotten from my doctors are “it’s rare”, “there is no treatment” etc. I’ve started researching on my own and came across your page and it’s helped me a lot !

  12. The ELISAspot test is available in America if you Google labs that run the test.

  13. Keys says:

    Has anyone experienced hair loss? Or menstrual irregularity?

    • Fawn says:

      Yes…I have. But I’m 51 years old. So I think I’m in pre-menopause for menstrual cycle change…but my hair loss is very bad.

  14. Kathleen Coate says:

    My son (38) started with racing heart and high blood pressure. PCP gave heart drug. He became lethargic and found out Type 2 Diabetic. Started taking that drug. Then extreme fatigue and bedridden. Admitted to hospital for heart….. Found Mono (monospot test). Nothing done about it. PCP said no more testing needs done about mono/ebv. Now, diabetic, pancreatic insufficiency, low BP and tachycardia. Can EBV do all this?

  15. Linda says:

    I found out in May 2021 that I tested positive for EBV. VCA AB IGG was 750 and my Early Antigen was 106 U/ml. It said that I had it in the past but I wasn’t aware of it. Over the last 10-15 years I’ve had the normal sore throat, swollen lymph glands in the neck and throat areas. I had many body aches that I attributed to past injuries as I was pretty active and also a mechanic for many years. After reading about CFS it crossed my mind that I may have had it but I never pursued any testing to find out. I also had much fatigue but just thought it was due to lack of sleep. It never occurred to me to get checked. I’ve been a mechanic most

  16. Jess says:

    Just looking for anyone who can shed light/thoughts of what I have going on. I have never been diagnosed with Mono in the past. I am 39 years old. I’ve had some crazy symptoms over the past 3 years. I had chronically elevated WBCs and monocytes, an odd blister type rash on just my right hand, swollen lymph nodes that were sonogrammed and showed nothing. Upper right quadrant pain but nothing wrong with my gall bladder. Over the last year and 1/2 or so I’ve started with this insane level of fatigue like first trimester pregnancy fatigue but not pregnant. Fast forward. 2.5 months ago I developed trigeminal neuralgia on the right side of my face then my entire right arm and went numb then my entire right leg and foot. My PCP said she had no clue what was going on and referred me to Neuro . Neuro did an MRI of my brain and it showed 5-10 non specific white matter lesions. The differential from the radiologist included a possible viral etiology or Lyme so I figured I’d rule that out thinking they would be all negative. My HIV, Syphilis, and Lyme were negative. BUT My EBV VCA Igm was negative My EBV VCA IgG was >600, My EBVNA IgG was >600 and my EBV EA was >150. I’ve also had a positive ANA with a low titer 1:40 speckled pattern but negative for further lupus and sjordens were negative. I don’t know what way to turn next. The neurologist thinks my numbness is a pinched nerve but what about all these insane lab results??

    • Rachel Thiel says:

      I had EBV first time in 2013 remaining asymptomatic until the last 9 mos. Had CoV in November 2020 and end of July i went to doc to discuss longhauler symptoms and issues and my EBV came back positive, again. Bearing in mind, due to pandemic I have not been intimate or shared food/drink witu anyone…that said, I looked at CDC site and some of the data and research shows Covid reactivated my EBV. Other than extreme fatigue, i havent had one of the other listed EBV symptoms. I hope this helps, even a little? I kmow naps have been my saving grace!

    • Sonia says:

      I had severe mono when I was 16. I feel like I’ve been tired ever since. I also have hypothyroid, and feel like levothyroxine makes no difference. I no longer have a gallbladder or appendix, but I completely understand the R upper quadrant pain that the doctors have no answer for. I also have Trigeminal neuralgia and there are times when my part of my face and head feel “asleep”. I’ve had insane neck pain for the past 8 months. It’s not a pinched nerve and doesn’t feel muscular, but it hurts like hell. I’ve told the dr I’m tired of being tired multiple times, but that falls on deaf ears. I honestly don’t know what to do, but I’m glad to see that I’m not alone and not totally insane with how I feel.

    • Johanna Gonzalez says:

      Wow Jess I have pretty much the same symptoms and test results. My MD wants to have me go to a neurologist for a pinched nerve too, but that does not make sense. So my question is what now?

  17. Naomi says:

    I have a question. In 2014 I tested positive for Mono so they did a Epstein Barr Antibody test. It showed positive for Antibodies. In 2015 they tested me for Epstein Barr Chronic Active Infection. I showed positive for EBV NA IGG and EBV VCA IGG. Well last week they retested me because I haven’t been feeling great and I showed positive for both. EBV NA IGG was 177 and EBV VCA IGG was 674. What does this mean? Does it mean I have Chronic EBV?

  18. Deann says:

    Just got my results back today. All of my titers were positive – and I have yet to find a chart that deals with ALL POSITIVES – in every chart – they anticipate at least something is negative…. but nope…
    * AG IgG,
    *Early AG IgG,
    *VCA IgM,
    *VCA IgG –
    all positive with really high ranges…. big sigh…

  19. Debra G says:

    I’ve just received my results from an extensive lab work up for LONGHAUL COVID and my EBV VCA IgG was over 600 U/mL reference range 0-17.9! It’s been over 35 years since I had mono and was beyond fully recovered! I am interested to hear more about the Elispot test about co-infections! I was a Biochemist in Rheumatology and curious as I can tolerate with this chronic fatigue the past 16 months!

    • Erika Robbins says:

      I am here for the same thing!!!! I had long haul covid and have crazy eye symptoms going on being blamed on covid. Just got blood work and Epstein Barr antibodies show recent infection… Same reference range and mine are 530! All are high. This is crazy!

  20. Bonita Frye says:

    I was diagnosed with EBV in 1993. I was 50 . I had severe CFS & FMS. It lasted 5yrs. I recovered after using CoQ 10 & diet pills from my Dr. I was severely fatigued. The diet pills gave me the energy to exercise. That was the beginning of my recovery. Not much info back then but I had read that exercise was helping some people to recover. I took 2 Darvocets just to get out of bed, the pain was so bad. During this episode my weight climbed from 135 to 200. A good day was being able to do 1 load of laundry but I would pay by being down in bed the next day.
    I finally recovered by using supplement & exercise. 25 years later a flare. I was again afflicted with debilitating fatigue. Sure enough my integrated Dr ran the complete test with EA-D AB igG, VCA AB lgG & VCA AB igM. Dr. said I have EBV again. I was so surprised because I improved my life style, eat organic & take supplements. I have started taking L-Lysine & L-Arginine (they work together) & other supplements. It is helping to improve my energy. I might be on the road to recovery again. Hope this is not too much info.

  21. Christie says:

    I just wanted to share with everyone that the best solution to reactived and/or chronic EBV is lifelong antiviral therapy. Any drug that is broadly effective against herpes viruses will work. It’s important to find a medical doctor who understands this. Do not waste your time with herbal therapies or voodoo liver detoxes.

    I currently take 2000mg Famciclovir daily and am back to living a fully normal and healthy life.

    Antiviral therapy is an evidence-based treatment and any MD with access to PubMed can look at the research. There is no excuse for medical professionals to not treat this seriously.

    • Kathleen Coate says:

      Hi Christie, my son(38) went from healthy 7/4/21 to disabled 10/1/21. The only thing that seems relative is EBV. First found bp and hr high… 160/100 and 160 respectively. Then found out type 2 diabetic glucose 360. He started having extreme fatigue and muscle pain which we assumed was diabetic drug metformin. 1 month later hospitalized for heart and found Mono/EBV. Now he has been diagnosed with POTS, pancreatic insufficiency, type 2 diabetes. No one is following up with EBV. (covid negative) What type of doctor in Orlando FL could work with us and get type of treatment you are receiving? THANK YOU!!!!!!!

      • Terri says:

        Infectious Disease. Call NORD for information regarding the condition, they’re more up to date with new findings. They provide resources such as organizations actively reserarching the condition, clinical trials involving the condition and support groups you can access

  22. Julianne Oseth says:

    After years and years with chronic pain, sweling, inflammation, swollen glands and cysts i finally got to a doctor who is a specialist.
    I also mentiones my persistent hpv virus(20 years) and he decided to run a number of tests, inclusing ebv virus, which I have had antibodyvtests for 20 years ago, and was tild then that i have had mono.
    The test this time showed elevated levels.
    I do not knpw excactly what test he ran, bit I am beeing retested before he refers me to another specialist. He mentioned lupus ang MS.
    I am freaking out after reading about Chronic EBV and the poor outcome it has.
    As i do not understand musch of any og this, i would love some words of wisdom🙏🏻

  23. Jean says:

    Wow…just wow
    I had an ebv test…all they said was…I had a past infection:
    EBV Ab VCA,IgM <36 neg
    EBV Ab VCA,IgG 306 HIGH +
    EBV Nuclear antigeAb,IgG 74.6 HIGH
    **** I had a bad reaction to my SECOND MODERNA vaccine…broke out in a rash,all over…could this be EBV coming out?
    Someone,please help me…I feel so alone in this fight

    • Glenna Downes says:

      You’re not alone. I had a similar experience. I got the J&J vaccine on April 5th. With a myriad of symptoms afterward, including muscle and joint pain, headache, sore throat, chills, sweats, and then a swollen tonsil on my right side that I still have today. PCP ordered mono spot on May 21st that came back positive, then EBV antibody on June 4th that came back:
      EBV AB TO EA D = 27.4 H
      EBV VCA IGG = 142 H
      EBV VCA IGM = <10
      EBV EBNA IGG = 68.6 H

      I am waiting for the ENT to tell me what this means in relation to the swollen tonsil. I suspect that the vaccine triggered the EBV/mono because I've been social distancing and being careful.

    • mary lynch says:

      Omg. I’had a reaction after first Moderna and have been having terrible daily migraines since the first and second. I just had the test and the IGG numbers were high. Don’t really know what they mean. The IGM was negative.
      I’ve been so sick since March.

  24. Dawn Johnson says:

    I had EBV a few years ago effected I think about everything . No one diagnosed me until way after . I’ve done a ton of reading my EBV Igm shows 36 & negative but , my EBV vca Iga stays high around 400 all the time & my EBV Nuclear Igg high around 50. however both have spiked again up to 600 & 76 . Yet my EBV Vca igm stays at 36 & my dr did a pcr test & said it was negative . But she has not done the EBNA
    antibody test . My understand is the antibody teat is the one that truly tells you if you are not currently fighting the infection ? Can anyone confirm that ? Can anyone else tell me why my numbers go up at times ? I’m just really frustrated with the way I feel & seem to not be getting good answers . Thanks for any input

  25. Justin says:

    Im in seattle too. I did a lab corp EBV and came up negative. Then did a quest diagnostics and came up in the 400’s for IgG.

  26. Susan says:

    My son’s ESV Ab VCA, IgG is over 500 U/mL. To my knowledge he has never had Mono. His ESV Ab VCA, IgM in less than 36 U/mL. No one can give me answers. Do you have a place for me to start? Thank you.

  27. Lenni M Parsons says:

    Thank you Elizabeth for sharing your story. I have had fatigue, got tested for EBV a few years ago, results came back “previous infection”. While my IgM was negative my CA IgG was positive 33.90, and my NA IgG was positive 475. Was fine for a long time and now extreme fatigue again. Never diagnosed with throat problems or mono ever in my life. Seeing a holistic doctor for more tests and watching Anthony Williams, think he might have this accurate.

  28. Teri Trahan says:

    My husband was diagnosed 4 years ago wirh Epstein barr. I dont know if this was his first infection or not he was 56. He has red spots covering his entire body which i later found out was hemorrhaging because his platelets dropped to a dangerous 60.000. He had Blast Cells in his blood and fatigue that was so bad he couldn’t get out of bed. They did bone marrow test because it looked like leukemia. He recovered somewhat. Now its fours later and he has tested positive again twice this year. This virus is attacking him in so many ways. The worst part is he has been to oncologist..gastroenterologist. rheumatologist and cardiologist. I told the dr that Epstein barr was at the root of the new symptoms but none listen. That’s when I demanded to test for Epstein barr and it was positive. Later I went back to beginning and found his blood work showed positive EBV that dr. Failed to tell us. He has had debilitating stomach ache and chest pain . He has been tested for gallbladder..pancreas and endoscopy and colonoscopy all tests were clear..oncologist thinks he has lupus which can be because of EBV. My husband has lost 30 pounds and I cant explain the exhaustion he feels. We are waiting on a dr from Houston Texas. Hopefully infectious disease dr. We cannot find a dr. Around Beaumont Texas that knows any thing. Not just that they aren’t LISTENING to us and putting the pieces together. This virus is killing my husband and I need HELP.PLEASE.

    • Christina says:

      I’m being treated by a doctor in Grapevine, TX. Dr Rodney Russell. Maybe too far?

      • Anna says:

        Hi Christina,

        I noticed your post about going to Dr.Rodney Russell. I was wondering if you would recommend him?

    • John Riley says:

      Hi Teri , if you happen to receive this I am going through the same thing as your husband. I’m 51 for the last year I been to every type of doctor you mentioned including heart to try to find out what is wrong . I just finally had a blood test for EBV .. It came back positive that I had it before but, I never had MONO in my life or symptoms…. the EBV IGG CAME BACK AT 750 .. I think thats the highest here ?? Me and my wife are desperately looking for answers but , not getting anywhere. I was perfectly healthy this time last year and it seemed like in one day my life has stopped. We live by dallas and was just trying to reach out to anyone to see if there is anything we can do ? I been having heart palpitations all year . Lost weight about 60 pounds of muscle. Stomach problems, exhausted, out of breathe… We just feel there really is no hope . So if by any chance you guys found out anything different or anyone else let me know . We even considered flying out to the MAYO CLINIC basically, anything to find out what is wrong . Sorry I never commented on any of these things so I am probably rambling and don’t know if anyone at all will see this but , again trying

      • Amanda Ewell Gallacher says:

        Try monolaurin- it kills EBV. But the virus is super hard to get rid of and you’ll need to stay committed to taking monolaurin for a few years. My in laws are doing it and I need to start. Read medical medium. My IGG is at 600.

      • Christina says:

        Hello John,
        My name is Christina also.
        I highly recommend a book on Amazon by Kaisia Kines.
        You see, 3 years ago I paid $$$ to have Kasia help me for 3 months for my reactive EBV.
        She is wonderful full of information that is proven to work. Her PhD was on EBV at Jogn Hopkins. I am now in another reactive case and will begin the same protocal she gave me.
        Hope this helps,

    • Nila says:

      Dr Tim McCullough in League City near Houston is incredible with this kind of thing. I highly recommend him. Dr Russell is good but Dr McCullough is much more skilled with blood work and alternative medicine. He’s one of the best for complex illness.

  29. Yenny says:

    thank you for all the info. I’ve had the virus for a couple of months and feels like the flu. I also have a TBI injury and that together is a lot of pain and fatigue. Can you please help me with a diet to make me fell better. and I will get retested soon

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