Epstein Barr Nuclear AG AB IGG result of over 600

Hi I'm Sandra. I've never had mono, but I have EBV. Had it many years before dx. Also have MG, and hosimotos disease. Heck I'm just tired! I see a neurologist and a GP. Maybe I should see a rheumatologist. Ur posts have really helped.

I had mono when I was just about 18 years old, I am 64 now and have NEVER felt good since I had mono. In the past 20 years OR LONGER , I am constantly lethargic, my eyes feel like they are closing all the time, I don’t have energy to do anything, and when I attempt to, it just exacerbates my symptoms. I have major brain fog, tinnitus, constantly have postnasal drip, body aches, was told I have fibromyalgia, and have been to more doctors than I can even count. I have been diagnosed with Ménière’s disease (inner ear).

In doing my own research, I decided to do an EBV test on my own by ordering it from Ulta labs online and then going to the lab to get it done. I was shocked to see the number so high, but it was only one test. I have major health anxiety from feeling like I’m dying pretty much my entire life and nobody listening to me.

So I took the results to my primary doctor, and he blew it off immediately, saying that anybody who had mono at any stage, they would always have high numbers for the rest of their lives. For a short time that appeased me, but it still didn’t give me any answers to my debilitating fatigue and other symptoms.

A couple months later I decided to go back to my doctor with some printed information about chronic EBV. The words that came out of his mouth, shocked me! He said, “I don’t know what to tell you, they didn’t teach us a lot about that in medical school. I wouldn’t even know who to send you to. I asked him if he could run further testing and he said he could do that but he wouldn’t know how to interpret the results. Mind you I’m in Oregon and my doctor is with OHSU. I would’ve thought he could tell me he would consult with a colleague, or send me to somebody who might understand the results. My results are as follows:

AB to VCA IGM is normal
Ab VCA IGG >750
AB to Nuclear AG / EBNA >600
AB to early AG >150

I’m so thankful to have found this thread it’s very validating. All my doctor ever says to me is that there is a mind-body connection and you have major depressive disorder and you need to get out, socialize; walk and be in the sunshine and get exercise. If I didn’t feel like this all the time, I would LOVE to get out and walk and get exercise. And I agree, I AM depressed… anybody would be who feels unwell all the time. On a rare occasion, I have a good day, and I don’t want it to end, but they are very few and far between. I have never considered myself a depressed person in my life. It is only when I feel crappy that I am depressed.

I have weird things like tachycardia attacks for which I’m on a beta blocker. Panic attacks. I can go from constipation to diarrhea, sinuses are always stuffy, my eyes are always burning, but I don’t have allergies to anything, I have some tremors in my fingers and my jaw, now I feel like it’s internal especially when I wake up in the morning, my brain feels dysfunctional like I have phrases and songs on loops Stuck in my head for days and weeks at a time. I just don’t feel like a normal human being, ever.

Thank you for letting me vent, I just don’t know who to turn to. I don’t know if I am supposed to see an immunologist, infectious disease specialist or where to go next since my doctor has pretty much thrown his hands up in the air, and said if he doesn’t know what to tell me. I’m scared I’m going to die soon, because the anxiety of not knowing what’s going on in my body is it 10 times worse.

I have been going through very similar. My EBV numbers are the same as yours except my AB to VCA IGM are NOT normal. I’ve been so sick for so long. My doctor tells me the same thing. She doesn’t understand EBV and my numbers just run high. Let it go Take an antidepressant.
I did see Infectious Disease who said the same. Conventual Medicine has no idea what to do with people who have EBV.
It was a Functional Medicine provider who ran the test that diagnosed this. Functional Medicine doesn't accept health insurance and it gets expensive. I followed the treatment protocol she prescribed for a year and my numbers didn’t move. She prescribed Vit C infusions, Lauracidine, LDN and a round of Valttrex.
This horrible condition no longer allows me to work. I won’t be seeing Functional Medicine any longer due to finances. I have had to accept I have to live with this condition and just “rest”, in other words, no life.
I had Lyme disease in 2020 which is another misunderstood condition. Functional Medicine ran labs and I was still reactive on 2 bands for Lyme. My regular doctor said that means nothing. I understand how hard it is to live with this and wish you the best. I so wish it was taken more seriously.

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.

I just got lab results back:
EBV Ab VCA, IgG: 94
EBV NA: >600

I don't remember ever having mono, but 3 months ago I noticed a swollen lymph node in my neck. I tested negative for active mono several times since then, but my lymph nodes have kept getting worse these past 3 months, to the point where I now have swollen and painful lymph nodes in my neck, armpits, groin... Very scared of what that could mean, as I read that EBV can cause lymphoma. My doctor is doing more blood work and mentioned doing a biopsy if the lymph nodes continue to get worse.
Anyone had the same issues? Besides the swollen and painful lymph nodes, I am feeling fine, not overly tired or sick.

Welcome to Connect, @clark95. While you’re waiting for other members to share their experience with EBV and if they’ve had similar lymph node involvement, have you had other tests run as well such as a CBC with differential?

Yes, I have had a complete blood count twice and my WBCs appear normal. Everything normal expect for slightly elevated platelet count and indicators of anemia but not too bad. Albumin slightly elevated too.
LDH normal. No positive markers for any autoimmune disease.

Hello eveii1986, I know its been a while since you posted but I was wondering if you could tell me the name of of your chiro/neuro functioning functional medicine. You can message me in private if that is preferred. Thank you!

I know, having swollen lymph nodes without obvious cause can be concerning. It’s only human to ‘fear the worst’…I don’t know why we tend to do this but it seems to be the norm. Most often, thankfully our worst fears just create unnecessary stress.
Chronic EBV can also cause swollen lymph nodes so that seems to be the focus of your doctor right now. Since the blood tests didn’t show anything with red flags your doctor is suggesting the biopsy of the lymph nodes. While I understand you’re fearful of what this may indicate, it’s really better to have this done, find a cause for your swollen lymph nodes and so you can move forward with a treatment to get back to normal.
Do you have an appointment for a biopsy yet? Will you let me know what you find out, please?

I know this is an old post but wanted to share that my EBV was also 600 and I, unfortunately, was just diagnosed with ME/CFS and it is an insidious disease! I hope no one else gets this diagnosis and pray that you are all feeling better this year!!