Has Anyone Here Been Diagnosed With Chronic Epstein Barr?

[janiedelite]

I had mono diagnosed by mono spot test 6/06 and my first pre-syncopal/tachy ER episode 10/06. I was 32 years old. I felt like I recovered fairly well from mono, but I've had a slow increase in fatigue, neuropathy, and other symptoms since then. When I went to Mayo a few months ago, the neurologist asked about my mono infection and asked if I'd been tested for chronic Epstein Barr. I was sure that I had labs drawn for this by my local neuro, and told Mayo that I'd tested negative for Epstein Barr.

Another Dinet member PM'd me recently because our symtoms were similar and she has chronic Epstein Barr. So I looked through my labs (I have then all organized in a binder) and I have NOT ever been checked for chronic Epstein Barr. Dinet lists this disease as being a common cause of dysautonomia. I have an exam with my PCP in the end of May and will ask her to do the blood tests for epstein barr.

So my question is: Who here has had antibodies drawn to check for chronically active Epstein Barr? Did you have to go to another specialist (like an infectious disease doc) for diagnosis or treatment? Did your diagnosis change your POTS treatment at all?

Thanks guys!

[Guest elyag]

I had a really weird mono like illness for 6 weeks last November. I had a lot of lab work done including a test for Epstein Barr. Resuts showed I had antibodies to EB but somehow they were able to tell the virus wasn't active. All it meant was that I once had it or had been exposed to it. Apparently lots of folks have antibodies to EB.

[Guest elyag]

http://74.125.95.132/search?q=cache:KdgSb9...;cd=1&gl=us

A link explaining the EB test and what the results mean.

[janiedelite]

I went to the CDC website which describes the three types of antibodies they check for Epstein Barr. One of the antibodies is present if you've ever been exposed (almost everyone has these antibodies) but there's another antibody that's present if you have a currently active Epstein Barr infection. In that case, your doc would then diagnose you with chronic active Epstein Barr infection. These antibodies are only present if you've been actively infected for more than a few months, so it's different than when you first get sick with mono.

You're right that nearly everyone will have some antibodies, but your doc can tell if you are currently battling an active infection of chronic Epstein Barr. I guess I'm asking if anyone has been told they have chronic, active epstein barr. Thanks!

[tinkerbella]

I was tested as i was exposed an found out by accident, which made me go for a test. I had very, very high levels EBV in the past but none current. I had been very sick in the past but no one ever knew what I had. I was also told that any woman on hormones this test will be masked currently and they must be off all hormones for 30 day before testing. SO, IF YOU'RE TAKING FLAX SEED OIL, that has estrogen in it and you may need to stop that also.

[janiedelite]

Thanks, Elyaq. I must have been replying to your post just as you were posting the link about the blood tests.

Great suggestion, Bellamia, to be off hormones prior to testing. I'm not taking any right now, but that's good to know. Thanks.

[EarthMother]

I tend to have high acute titers for EBV and then always the chronic titers as well. I spoke with my Dr. today about this in fact, but the problem is ... we really don't know what to do any differently. So yeah, sometimes I go through a chronic episode of EBV or my Hashimoto gets really active. Still nothing to do, except wait it out.

[janiedelite]

Thanks for sharing your experience, Earth Mother. So it seems that even if Epstein Barr is underlying my POTS, there isn't anything to be done differently. I guess the main benefit for me to get the testing done would be for disability purposes. There is more known about the EBV than dysautonomia and it might validate my symptoms more as I'm still trying to get SSDI. Thanks.