I too have had a long battle with EBV. First had mono when I was 15, diagnosed with CFS at age of 30, levels have reactivated a couple of times and currently in a reactivation. (now I am 45).
Unfortunately, I really do not have any help for you. I just wanted you to know that you are not alone and hopefully someone else will come along and help you more. I think getting a second oppinion is always a good idea. Have you seen an infectious disease doctor or a doctor that specializes in EBV?
There is no one in an hour plus of me that does anything with EBV in my case, but maybe you will have more luck. I don't think the medical community gives enough attention to the virus. I think it may predispose us to other disease and it is important to figure out how to knock it's effects out asap.
Hope this finds you feeling better,
Since my last post I had further testing done. I was still continuing with the low grade fevers, body and joints aches, etc. Turns out that I've had Lymes Disease all this time. Probably have had it since last summer. My EBV is still showing positive, but the doctor thinks it's due to the Lymes. I also had a positive ana with a speckled appearance and elevated ESR. So, I have an appointment with an infectious disease doctor on 6/1. Anyone with a positive EBV for an extended amount of time should get a Lymes test. I don't know why, but the doctors seem to miss it.
With a positive ana and elevated ESR are you going to a rheumatologist too?
Which test did they use to get the lyme diagnosis?
Keep us updated. Hope all goes well!
So far I'm going to the infectious disease doctor first. I'll see if she thinks that the Lymes could be effecting the ana and esr results. But, I was thinking that I should see a rheumatologist too. I had both the ELISA and the Western Blot done and both came back positive. Can't wait to get to the infectious disease doctor tomorrow. I've started getting some new symptoms. I am now getting pins and needles sensations in my hands and fingers, and I feel like my forearms are burning. Thanks for the well wishes K.