hello lisa,
your test results and symptoms reflect what my wife and i have suffered from for many years. American medicine has ignored it, and the only country paying any attention is the united kingdom. go to a British medical site and put in your search, ME/CFS. hopefully, you do not have it .God bless
patrick & elizabeth

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!

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 know this is from a few years ago... but I hope you are doing well. I just got diagnosed with EBV, levels over 600 and I have had it most likely for years... last time I had strep/mono, was 8 years ago.

My doctor has treated another person I know with a similar diagnosis and they seemed to recover well. I am taking a supplement to heal my liver, because that is where the virus is, so if you have not been given information on that it might be worth looking into.

I have almost identical symptoms as and test results right down to the fibromyalgia. I was diagnosed with that over 20 years ago although I’m sure I’ve had it a lot longer than that. I’m 68 years old and have other issues also. I refused Lyrica due to already being overweight.
The rheumatologist just said oh yeah you have Mono without any kind of explanation right at the end of visit. I was shocked and walked out without asking any questions. Positive Lupus levels but not enough to say I have lupus. It’s all so overwhelming at my age. I’m not a good sleeper so it’s really hard. My internal clock has been way off for years.
I do have an appointment with an infectious disease specialist so maybe he has some answers.