Epstein Barr Nuclear AG AB IGG result of over 600

Greetings from Texas!

After I received an EPV IGG result of 750 today, my husband found YOU!!! I could not be more grateful. Dr. Google, through no fault of his own, happened to catch my eye with an article (first in a new career of research) that this result indicates chronic EBVc and that it is fatal.

'Scuse my language, but...wtf?!?!?!?!?!?!?? My husband is having g a lung biopsy Wednesday and we anticipate removal -- malignant or benign -- shortly after. A Saturday result like this has me in something of a panic...am I highly contagious? Am I posing a risk to my husband? Is this really THE indicator for chronic EBV?

All of my symptoms fit the bill to the letter. Had this a year ago, but never sought treatment as I was convinced it was depression.

I have great medical care and access to medical answers - so thankful! But assuming this is not a lab mistake, my octopus brain (the amygdala-driven monster!!) Is wondering how it is possible to actually LIVE LIFE with this continual exhaustion and weakness. HOW????

For once I am thankful for Texas heat (high 90s and heat alerts about six weeks early), since my reaction to it drove me.to the doctor. Better to have clarity and truth, rather than continuing to assume I really had covid with a slow recovery. This would seem to be a very different animal.

Blessings to each and every one of you dealing with this. It feels like a well-kept secret, so your "fellowship" and positive exchanges are truly making a difference.

Thanks for any thoughts you wish to share.

Nela/texgarden

Also have extremely high Epstein Barr titer. Have had it for 30 years. After all sorts of tests and trips to doctors,
the differential diagnosis is Chronic Fatigue Syndrome or ME/CFS as it's now known. New name, no known cure.
Aches, pains, foggy brain galore. Have never been told I'm contagious. However, I don't kiss or hug friends and
stay far away from newborns. Have visited experts in the field, virologists, rhumatologists, neurologists. Afraid no one has an answer so I sympathize with you. Wish someone could find some
treatment to do. One thing I have learned is not to knock myself out. I have a two hour bank of energy and that's it.This goes for exercise, too. Find out what you can tolerate. I learned if I pushed myself, I paid. Some people do
recover. Some don't. Good luck to both you and your spouse.

I too have a count over 600 for years now, and its so dam frustrating because Ive been to doctors for joint pain, chronic inflammation, Ive been tired for years, I do exercise and finding after work outs I am so exhausted I can barely function, its horribly frustrating there is no cure or treatment that I can find. Ive been on vitamins, anti inflammatories, etc, and nothing seems to work. ANY info or help would be appreciated, im pretty much giving up on American medicine its pathetic how incompetent and lazy doctors seem to be, basically telling you thereis nothing they can do other than prescribe meds or suggest vitamins etc. There has to be something, Im getting tired of this, Im 60 and this is getting old!!!

Thanks so very much! And thank you for sharing your experience. I am not yet to the point that I have accepted limitations -- but am moving swiftly in that direction.

During your investigations into the "mystery", did you have a DNA study? Not sure that is actually a "thing" that people routinely do.

I can see that this is a process that will require the tortoise approach -- slow and steady. My initial panic didn't help. 😉

Thank you again!! And sending positive wishes for your continued understanding, both of the disease and of ways to cope.

no one suggested DNA study. will ask my primary care physician. haven't seen articles about this. in fact, most of
the information i receive offers no ideas for studies or treatments. the high epstein barr titer problem has been
noted since i developed ME/CFS. originally, doctors said if you pulled people off the street, a high percent would
have this elevated titer since most people have had mono and most don't know it. it does seem odd that the titer
doesn't level off and that certain people develop ME/CFS while others don't. no one has provided answer. the other question is what would physician do with the DNA information? not sure. when you say you're not ready
to limit your activity level, you then have to pay the price. it's called post-exertional malaise. there's no way to avoid this that i know. if you're not getting pem, that you don't really have a major problem and that's super.
if you do have pem, then you have to learn how much wear and tear you body can take. in passing, another test
to have is a herpes test. herpes can be treated if you don't have kidney disease. this treatment might make you feel better. most physicians don't test for this. however, some ME/CFS specialists do. all food for thought. again, do
hope you improve. always good to communicate with someone in similar boat.

Again, best wishes for betterness.

Read the book From Fatigued to Fantastic on Amazon. The author seems to understand this issue and suggestions to treat. Conventional doctors do not understand.

I had similar results from an EB panel. I had mono a little over a year ago and suspected a reactivation a month ago. The doctor I went to only took the heterophile test so there was no way to know if I tested positive because of antibodies or active infection. I recently asked my primary care physician for an EBV antibody panel because I have a recurrent sore throat, post nasal drip and fatigue and was suspecting ME/CFS. In the results of my EBV panel, the Capsid IgG was 133 and the nuclear IgG was >600. My primary care seems unconcerned and just said it means I had it in the past but don’t have an active or recent infection. Does the super high nuclear IgG mean anything? Does this signify CFS? Can CFS be mild? I do feel fatigue very often and I feel like I hit a wall of tiredness sometimes and I just can’t do anything. I am pretty much able to hold down a full time job but I have to take many days off and my employer has expressed concern about that. I might just be paranoid but I feel like something is off here. Thank you to anyone who reads and replies!

Also if it helps I am 22 years old and female. My doctor ended up diagnosing me with allergies for the sore throat and PND which seems correct. I guess I’ll see if the Claritin helps.

Thanks so much for your candor. Yes, for a long time this has been an issue. I'm an avid gardener, and that is my primary exercise...15-25k steps over a weekend. In the past two years I have figured out that for every one day (8-12 hours) heavy gardening, it takes three days to recover, sometimes even missing work. I am very, very sensitive to heat, and the longer this goes on, the less time I can do my regular activity without near collapse. The strategy of just "driving to the finish" just doesn't work anymore.

One thing I am starting g to wonder is whether I am referring to the correct "high number" in the EBV tests. Unfortunately, I haven't been able to reach my doctor to clarify. I also have some abnormal liver and kidney numbers from the same draw as my recent EBV.

When you first started this process did you see a rheumatologist?

I am thinking that self-care may start with asking my physician for a referral to a rheumatologist. I've had these symptoms for such a long time, and it was only learning my EBV antibodies are so high (750) that made me start to see that maybe these symptoms have a cause and are not just me whining.

Thank you.
Nela