Epstein Barr Nuclear AG AB IGG result of over 600

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)

There must be millions of us in the world. No one pays much attention, had EBS/CFS since I was around 45 and things haven't gotten better.
All the fuss about Long Covid is really a fuss about Post Viral Syndrome. Perhaps if something is discovered
about this, it will help us. As you mature, you develop other diseases as is natural,but this isn't the basis for what's
tiring your body.It is a good idea to keep having basic blood tests that a Primary Care believes to be essential.
At least that way, someone is watching how your body is progressing or not progressing. Other than doing a
differential diagnosis, no one has come up with anything for me. The differential is vital and then it's watch, watch, watch. As I've said before, good luck to us all. In addition, if anyone finds a physician who finds something helpful, it would be wonderful to learn about it and learn who the physician is.

Totally agree. I'm anxious to find some physician to find something that's helpful.

If you find this EBS physician, let me know. Went to one in NYC. Lots of blood tests. No suggestions. Maybe
Long Covid will help in the longrun. I'm 80. CFS took charge of my life at about age 45. No more job possibilities.
No more tennis. No more travel. Very short walks. Now at 80, lots of other body parts having problems. Don't
know if this is related or not. Would have been glad to volunteer as potential patient. No one in area interested.
Part of the cure problem is where you live, I think. Sooooo, I'm trudging along from doc to to doc. Not very
encouraging. The fascinating question is why do some people recover and some don't. Open to all suggestions.

Hi, I am also glad to have found this post! I have the same result as @lsh who originally posted, but not sure if they are still active on this site?

I, like you @lisa191 have many of the same issues. I am very discouraged as well. Sadly, I am in the medical field and still have not been able to get appropriate care until recently, someone is finally listening and trying to help.

I was noticing as perusing the post that I do not think everyone is speaking of the same result and I am wondering if that is important? There are so many EBV Ab's to test and it is hard to find a definitive answer for the meaning of the results.

My EBV Viral Capsid Ag (antigen) Ab (antibody) IgG is 246 and my EBV Nuclear Ag Ab IgG is > 600. Most allopathic doctors will not do much with this. I found a functional medicine MD that wants to treat me with Valtrex 1000mg daily for 1 week then increase to 1000mg twice daily for a week in conjunction with two immune supplements from Ecological Formulas
Monolaurin 600mg, I was instructed to take 3 at breakfast
L-Lysine 500mg, one 3 times daily either 30 min before a meal or 2 hours after

This MD thinks that my high histamine level with these EBV results and my other symptoms are a long term consequence of my EBV being present at these levels for so long. He said it may only be palliative care at this point as I also now have lymphedema in both legs and have been suffering with all of these symptoms for years with no validation or treatment. But he is willing to stick with me and try different things thankfully.

@lisa191 was there any support or help from your Rheum appointment in March?

@michellebelle, would you be willing to share the name of the EBV facebook groups that you have found helpful and informative?

@pflmckenna would you be willing to share a support site that you have found most helpful in your and your wife's journey with ME/CFS?

Thank you all!

Hi, Yes I am still around and thank you for asking how I am doing! Also I was curious as to what health field you're in and if that has been at all beneficial in researching your condition-- it is very discouraging to think even a healthcare professional is still in the same boat with this. To answer your question, I have stopped going to rheumatology due to it not being helpful.

An update to my situation is, I had covid last fall and that has led to some additional problems but interestingly enough, I tried eliminating meat from my diet because I read an article about autoimmune disorders and molecular mimicry. i.e. the body reacts to animal protein like it is an invader and there is a reaction every time protein is consumed. It has made a huge difference in my energy levels and sleep cycle. The only problem being I have to figure out how to get protein into my diet without causing this issue. I had also been having reactions to wheat and I think it could be protein in that as well. So that is what I am doing right now. I also had a theory that because the MMR has byproducts from chickens and cows that could be why I am reacting poorly to meat and eggs now. If I had tried this 7 years ago it would have made such a difference in my life but at least I can try to regain energy and health moving forward.

I noticed in one of the posts it recommends staying active and walking, lifting weights etc. I only wanted to say that having this condition made that impossible. If I were that active I would have to sleep the entire next day. It drained my energy even to lift groceries or walk a short distance. I am sure I'm not the only one who feels upset when someone recommends an active lifestyle because when having the joint pain and fatigue, that is simply not possible. I can say that at least now, I can consider increasing my activity slightly, but I cannot emphasize enough how debilitating this has been and how frustrating that I couldn't get help for it.

Hi Lisa. Thank you so much for the response. I worked as a pediatric physician assistant for many years. It has helped in knowledge and understanding when searching medical information, but still has not improved my access to care (diagnosis and treatment) for the issues, if that makes sense?

I’m sorry to hear that rheumatology was not beneficial for you but very happy to hear that your symptoms have improved with eliminating protein. If you have a link to that article article about autoimmune disorders and molecular mimicry, I’d like to read it. I do believe that food can be a huge asset in healing. I have been off of all sugar, honey, agave, sugar substitutes etc for about eight years now. I limit gluten but allow it if I’m out and about or traveling, which is rare. I also have finally mostly removed dairy from my diet as well. I can’t say that any of that has helped, except the sugar elimination. But I eliminated them all to help with inflammation.

For other reasons, I cannot eat soy. I need to limit eggs and cannot tolerate legumes, so if I didn’t eat meat proteins, since I can’t have dairy either, there would be no protein to be had.

My body/system cannot handle eating all carbohydrates, my inflammation increases. I think all of this can make it so much more difficult for medical personnel to treat everyone, especially if we fall outside the “normal” response. There are so many other contributing factors: allergies, trauma history, ethnicity, etc. that one food that helps someone could harm someone else. It really is just slowly doing elimination and seeing how my body responds - that is how I have learned what I have

As for Covid, thankfully I’ve never tested positive for it. However I received the booster January 14, 2022. Because I had the second vaccine nearly 10 months previously, I received a full dose of Moderna vaccine as my “booster”. 12 hours later my left knee was swollen to twice it’s size and all my other joints were swollen and sore as well, even my fingers. Nothing has improved much since. It is as if my knees aged 30 years overnight. Sadly I’ve heard of a man that had a similar reaction and was admitted overnight at a hospital and is being treated by a rheumatologist who refused my case. I have no idea why, but this limits my access to care as well. Medical background or not, I do not have the ability to do this all on my own.

I totally understand the trigger of, “just exercise more and you’ll feel better”. I have also learned a lot in this area. I really like the book ‘eat for your blood type’. There was also a TV show years ago called The Food Hospital that was in the UK that I found incredibly interesting and helpful. Again, everybody is so different in how they respond and none of us will respond exactly the same. And sadly, those of us that fall outside the “normal”, often get dismissed. The eat for your blood type book recommended that blood type A’s are more prone to have inflammation which results in cancer and autoimmune issues. And that is certainly consistent with the A’s in my family. The book recommends a mostly all vegetarian diet for A’s, which I cannot do.

I was a swimmer as a child and I honestly just learned recently that I was the only one that needed to take a three hour nap in between morning and afternoon practice. Everyone else played basketball, socialized etc. I felt very validated when I read in the book that blood type A’s often require more slow gentle movements like you would experience with Chi gong, tai chi, or yoga. And that intense exercise will have the opposite effect.

Pardon the vulgarity, but it honestly feels like throwing s#*t at the wall and hoping something sticks. Chronic joint pain and inflammation with fatigue is exhausting in and of itself. To have to be my own advocate and medical provider, makes it all that much more challenging and exhausting. That’s why finding these groups can be really helpful to get through the more difficult days.

Thank you again for responding and for the connection, it is greatly appreciated.

Thank you for your reply! Here are 2 links to articles I read-- there are more articles that are very technical but I've linked to these because they are more straightforward.
https://nutritionfacts.org/video/the-inflammatory-meat-molecule-neu5gc/
https://nutritionfacts.org/2014/07/03/how-animal-proteins-may-trigger-autoimmune-disease/
Based on what you just wrote, I strongly suspect this is affecting you also, but you've gone the route of avoiding plant based protein due to reactions to soy and legumes. I have noticed this myself too, but the meat is so much stronger in causing these problems. My theory is the closer the protein resembles the suspension or ingredients in the vaccines, the greater the autoimmune reaction. So for me that would start with the major animal products such as meat and eggs. I think that because milk is produced by the animal naturally and not animal tissue, dairy products are still not too much of an issue, and lastly plant based. Also I am wondering if the daily recommendations of protein in the diet are exaggerated and maybe hopefully not as much is required.

I think that I may try yoga now that I'm feeling better as well to get into exercising again.

I too have the same numbers after COVID vaccine. Been 16 months and I feel like crap. I've learned a lot from a FB group. #1 my dr did not do all 4 test required...only did 2 and told me its chronic and there is no medicine for it. From what I understand he cannot determine that by only 2 tests.

I have very high EBV antibody readings as well ( all but IGM). I spoke with an EBV specialist and she suggested I get a EBV DNA / viral load test. If you haven’t done this, you absolutely must. My GP wanted me to take all these anti virals as well. That would have been useless for me because as it turns out my EBV viral load is low. I have an immunologist now. I have a CD8 deficiency. They aren’t sure why but this is typically a genetic issue other than intermittent issues. Mine has been this way as long as it’s been tested, which is for the past 10+ years. Because of this, I am unable to put the virus in a latent stage. So, the antibodies have been working overtime.