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Epstein Barr Nuclear AG AB IGG result of over 600

Infectious Diseases | Last Active: Oct 29 10:35am | Replies (146)

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@sunforest

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!

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Replies to "Hi, I am also glad to have found this post! I have the same result as..."

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.

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.