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Epstein Barr Nuclear AG AB IGG result of over 600

Posted by lsh @lsh, May 3, 2020

Hello, I am searching for information and also input because of my hideously high lab results for EBNA Nuclear AB IGG. My result was given as over 600. The range is less than 18 is negative. Over 22 is positive. To restate, my lab result is over 600.

I am 52. I did have mono at age 11. For at least four years I have complained on numerous times to my PCP of fatigue. We suspected thyroid but that has been treated and I still have suffered from bouts of fatigue, feeling like I was coming down with a bug, dizziness, etc for 3 or 4 days out of just about every month for the last eighteen months. I finally saw a naturopath who tested me for EBV.

I love my Naturopath, but I am wondering if I should be seeing a specialist because of this high lab result.
I am on a treatment plan of antiviral supplements, and immune supporting vitamins and supplements which she said will probably need to be taken for at least three months.

Has anyone else had numbers this high? I am having trouble finding much information on reactivated EBV.

Thank you!
Lisa

Interested in more discussions like this? Go to the Infectious Diseases Support Group.

andrewcat1 | @andrewcat1 | Mar 15 10:13am
In reply to @kallie "Lisa, mine was over 600 as well. It was explained to me that it means I..." + (show)
@kallie

Lisa, mine was over 600 as well. It was explained to me that it means I had previously had EPV prior to my current infection. I was diagnosed with mono at the age of 59.

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I was finally diagnosed at age 55 after 4 visits to the ENT. This was in 2012. I have never completely recovered physically. I do not absorb the B vitamins even though my Vitamin B panel is always good.

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andrewcat1 | @andrewcat1 | Mar 15 10:27am
In reply to @lindy1965 "Yes, mine has been this high since Covid, early 2020 or before. I had mono as..." + (show)
@lindy1965

Yes, mine has been this high since Covid, early 2020 or before. I had mono as a teenager as well. When I began to feel debilitated with fatigue and had a rash all over my back I went to several doctors, primary care, rheumatologist, pulmonologist, neurologist… No one could figure out what was wrong with me until I saw an integrative doctor after I started passing out at work in June 2021. I had 3 ER visits in a year with chest pain as well. I have been diagnosed with long-haul Covid, reactivated EBV, ME/CFS, Fibromyalgia, dysautonomia, POTS. I have been really sick since April 2020. My primary care still has the nerve to say to me that it’s depression. It’s awful the gaslighting that comes from doctors.

It’s so frustrating, I spend every day resting because I have no choice I’m so debilitated with fatigue. I have tachycardia when I stand for too long, and I’m dizzy more than I am not. If I happen to have what I call a ‘decent day’ I inevitably end up with post exertional malaise from basically doing nothing. Sometimes the PEM can last for a week sometimes it can last for a month. I currently take Vitamin C, D3, L lysine, Monolaurin and a really good Multivitamin from Pure Encapsulations. I am 58 years old, single and can no longer work. They don’t know if Covid itself triggered all of this or the vaccine. I have no friends left because every one is tired of taking me to doctors appointments and then they eventually just stop calling because I’m always sick. It’s a hard pill to swallow when people say things like “ Yes, well I’m tired too” and then they go out for the night or away for the weekend.
Interestingly , I feel like I had more better days last summer than I am currently. It’s so frustrating, isolating and sad. Everyone else is out living live.

I hear you all.

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When the sun comes out, I feel better as well. Diagnosed in 2012, after 4 visits to the Ear, Nose and Throat Doc at age 55. I was so outraged that a person at work was using the employee restroom for nasal rinsing. I know this is how I got it. I am now battling pneumonia. On day 12 with a different antibiotic. This time it's Augmentin. I have crappy docs.
I am so happy I found this site. It somehow gives me a ray of hope that I will feel better for my daughter's wedding in July.

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andrewcat1 | @andrewcat1 | Mar 15 10:29am
In reply to @seekay "I am a 67-year-old female, and I was diagnosed with EBV back when I was in..." + (show)
@seekay

I am a 67-year-old female, and I was diagnosed with EBV back when I was in my early 30's. The symptoms eventually went away but started coming back to haunt me throughout my adult life. It would manifest and I would be almost debilitated with pain and fatigue for a couple of days and then it would subside. I found that many times it was stressed related. Then it was almost like fatigue and aches became a way of life. I started seeing a Naturopath about 15 years ago, and she is a God send! She never stops trying to figure out my symptoms. She discovered by thyroid was low several yeaars ago as well as my Cortisol, but we did get that back to normal, but the body aches and extreme fatigue became a regular issue down the road. Then low and behold she tested me for EBV and my numbers were like so many of you, OFF THE CHARTS! She did tell me it has become CAEBV and we started medication for 60 days at a time. After the first round the symptoms were still evident, but after the second round I am feeling much better. By better I mean, not so achy and the fatigue is bearable, but I still have some days where I have to determine myself to move, get up and get something accomplished! I hate it! I have brain fog but some of that I believe is age related but I'm sure it exacerbates it. My recent testing shows that the numbers have decreased from 600+ down to 535. Better but still symptomatic. I just got the results, so I am waiting to talk with her about them. She also did a more thorough test regarding Lyme, those results have not been returned yet.

Let me tell you though, she is like a ferret. She keeps testing and researching, and we have now tested for Black Mold. It also was positive! Which came first? I don't know yet. I am learning as I go here and always have lots of questions. The one thing that made so much sense was, I was diagnosed with breast cancer June 2020. That came totally out of left field because I am totally not a candidate. I am healthy, active, eat natural, NO CANCER ON EITHER SIDE, breast fed my babies and am small chested. God was good and we caught it early, but it was a totally enigma. Then, after all of these tests, it made a whole lot more sense. My immune system was weak and threatened. I continue to work on staying healthy, exercise (which is not always easy) eat right and take supplements that are recommended.

I have never been told that I am contagious. Initially Mono is, but once it becomes advance into CAEBV, it is not. I also have regular testing done regarding my liver, as CAEBV can totally affect it as well as the medication unfortunately. Hopefully I am done with that for a while.

I hope my story helps for someone out there. Many doctors don't believe, agree or have knowledge about CAEBV. ( Lyme as well). If you are not satisfied, I would find a doctor who does support these viruses, because they are real. Naturopath's usually are not covered by insurance which makes it difficult so all things are in stride and when I can afford them.

Bless you all that are suffering and don't lose heart. There are many of us out here that feel your pain and frustration. Take care and do your best. It is hard to have something that is hard to explain to others. Having a group of people here to chat with, that knows what you are talking about, helps in many ways and to know that you are not crazy :O)

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Thank you for your story.

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aelk1986 | @aelk1986 | Mar 18 1:36am
In reply to @aztennisguy "Thank you for the helpful info. I am unsure which doctor's to even go to these..." + (show)
@aztennisguy

Thank you for the helpful info. I am unsure which doctor's to even go to these days with my post covid issues. Almost all of them seem like a deer in headlights when you tell them your issues, and even show them your >600 EBV values post covid. I was competitive tennis player 2 hour a night prior to covid in 2021, and now have more muscle pains than ever before, and even lymph issue when trying to even exercise a little more on the tennis court. It is disheartening to know no doctor's seem to know what is going on with all this funding that has been given out. I have read that high EBV post covid and cause ME/Chronic Fatigue, as well as Hodgkins Lymphoma. Kind of worried about this, and wondering can anyone suggest the correct doctor's to see to rule out this stuff? I told my PCP my lymphs in neck hurt, muscle pain, etc. and basically gave me prednisone. I just want to find the correct type of doctor that will do the correct tests if anyone has suggestions? I see mention of rheumatologists, etc. but I have been there and they said I have mixed connective tissue disorder post covid, but that does not explain lymph issues now. Any suggestions would be appreciated.

Hope everyone keeps positive when there seems to not be much help out there. Long haulers are now our own self-care covid clinics 🙁

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Probably too late, but you need to go to an Infectious Disease Doctor

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kenforce | @kenforce | Mar 19 6:09am

I had almost the same number of over 600. I knew something was wrong and watched the number climb into the mid 500's before I started antivirals. It took me 9-12 of antivirals to drop that value down to the 230's and at that time I was feeling better with normal energy. I still take a low dose antiviral to this day because I felt the much milder symptoms returning over the year after I stopped cold turkey.

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1 reply
romonaoliver | @romonaoliver | Mar 19 2:08pm

Mine came back >750 so it was recent ebv infection. Never had mono before but, I am immunocompramized pretty sure I have some type of blood cancer. I have tumors all over my body including one removed from my right inner ear. 4 bones that have died. Now this and tired constantly, no matter what I do, I go down like a crashing airplane. Had 3 infections and 1 virus last month alone. Hopefully the doctor can get me either figured out or sent in the right direction.

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bmacinnis | @bmacinnis | Mar 24 6:10pm
In reply to @kenforce "I had almost the same number of over 600. I knew something was wrong and watched..." + (show)
@kenforce

I had almost the same number of over 600. I knew something was wrong and watched the number climb into the mid 500's before I started antivirals. It took me 9-12 of antivirals to drop that value down to the 230's and at that time I was feeling better with normal energy. I still take a low dose antiviral to this day because I felt the much milder symptoms returning over the year after I stopped cold turkey.

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@kenforce I also have numbers over 600. What antivirals/dosage are you taking? What kind of doctor are you working with?

Has anyone in this forum found a specific hospital/clinic that specializes in this?

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luvrofthelord | @luvrofthelord | Mar 25 4:40pm

Ye, my numbers have been consistently in the 700's. I see Dr. John Chia, an infectious diseases specialist in Torrance, Ca. I have been seeing him for more than twenty five years for Cosacki B 4 infection. He is leading the research on this enterovirus. He was a research physician at Cedar's Sinai in Los Angeles for years then when his son came down with this virus more than 20 years ago he began to devote his career in trying to help people with chronic fatigue and fibromyalgia, so he is very familiar with the symptoms. Unfortunately there is no real treatment for this virus. I apparently had Mono when I was young and don't remember much about having it. However when in Europe 25+ years ago I came down with something. When I got home I couldn't get well and was so fatigued that I went from a very active working woman who exercised all the time to someone who is fatigued after short walks. I was put on many courses of antibiotics, antivirals, IVIG infusions and so far nothing is helping. Please go to an infectious diseases specialist and give him/her all your symptoms. Perhaps they may be able to help you. There is also a website MECFS which is for people with chronic fatigue and long covid. They are very helpful and you will find there are thousands of us in the United States alone who suffer with this illness.

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lindy1965 | @lindy1965 | Mar 28 9:58am
In reply to @kenforce "My EBV Nuclear EBNA Igg was near 600. I started taking 1g 3x daily of valacyclovir..." + (show)
@kenforce

My EBV Nuclear EBNA Igg was near 600. I started taking 1g 3x daily of valacyclovir for 9 months until my Nuclear EBNA Igg dropped below 250. I was great for about a year and then the symptoms started creeping back. Since then, I'm taking 1g 1x daily and doing well.

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Any side effects from the anti viral?

Thank you.

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edcarlis | @edcarlis | Apr 12 4:54pm

Hello! I found this post because like everyone else here, my labs are wonky and don't make sense. I got Mono at 16, and was never the same again. I missed the first 3 months of my Junior year of HS. I'm almost 48 now, and was diagnosed with an aggressive form of MS in May of 2007. Since my first bout with Mono, I've experienced numerous "reactivations", or so I thought. My EBV Nuclear Antigen, Ab, IgG lab value is greater than 600. The value for the Early EBV Titer, Ab, IgG, is elevated as well. My Neurologist recently diagnosed me with Myalgic Encephalomyelitis (ME/CFS), and I was referred to an Infectious Disease Dr. She ran 6 lab tests, and they all came back negative. Even the EBV DNA, Quant PCR blood test. She wanted to rule out Cytomegalovirus, and of course, that test was negative. My Neurologist is freaking out because he knows something's wrong. The issue is he doesn't know where MS ends and whatever's wrong begins. I'm at the end of my rope. I can't continue living this way. My quality of life is non-existent. Simple tasks are overwhelming and I use a wheelchair whenever I leave the house. From what I read about ME/CFS, there's not much that can be done for it. I try to stay positive, but I'm losing hope. If anything, I'm comforted to know I'm not going bonkers. I don't understand how some EBV tests come back off the charts, but the major one is negative. I asked the Infectious Disease doc how that's possible, but didn't get an answer. I'm waiting to hear back from her and my Neurologist on what the next steps are. Thanks for listening, and I hope everyone is doing okay.

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