Epstein-Barr treatment options?
April 23, 2011 9:50 AM   Subscribe

A friend of mine has a relative with Epstein-Barr. We are looking for information on treatment and doctors in either New York or Chicago.

A lot of the information out there for Epstein-Barr seems a little woo-woo, and I'm having trouble finding legitimate resources that have treatment options and doctor referrals.

A possible complication is that the patient also has trouble with UTIs and kidney infections, so is regularly on antibiotics. I don't know what kind.

I've read that low-dose naltrexone can sometimes help symptoms. Does anyone have any experience with that? The most concrete info I can find about it is doctors saying, basically, "yeah maybe."

Any information or doctor recommendations would help tremendously. We're looking for resources in either Chicago or NYC, as those are the easiest for her to get to, but if there's some really awesome specialist living in Houston or something, I want to hear about that, too.

posted by phunniemee to Health & Fitness (6 answers total)
What sorts of symptoms is your friend having?

"Having Epstein-Barr" isn't super-descriptive. The Centers for Disease Control point out that 95% of the population test positive for the Epstein-Barr virus; basically, if you've ever had mono, you will have EBV. There isn't really any treatment for EBV, as far as I can tell, apart from the flaky woo-woo stuff you've found already. So for me, the better question might be, how does she feel? Are we talking profound fatigue? Low-grade fevers? Low energy? Reduced stamina? Then look for resources to deal with that.

If she has Chronic Fatigue Syndrome, which is often thought to be associated with EBV, you might have better luck finding resources for that. Although I think they've pretty much ruled out that CFS is caused by EBV.

CFS is usually diagnosed and treated by rheumatologists. The Mayo Clinic article I linked above might give you some ideas about how it's treated, which in turn might help you narrow your search.

Disclaimer: I am not a medical professional of any kind. However, my job does require me to interact with physicians, and to read medical records, on a daily basis. I consider myself a knowledgeable layperson.
posted by That's Numberwang! at 10:50 AM on April 23, 2011

Response by poster: "Chronic Epstein-Barr Virus" is what I was told; I don't know if or how the symptoms differ from Chronic Fatigue Syndrome.
posted by phunniemee at 10:55 AM on April 23, 2011

Best answer: New York or Chicago? You're talking about two of the biggest cities in the country, which happen to have some of the most advanced medical facilities in the world. Just contact the university hospitals in the area, e.g. The University of Chicago Medical Center or New York Presbyterian Hospital. Both have major infectious disease centers.

I guarantee you that someone there will either be exactly who she needs or will be able to refer her to the person who is.
posted by valkyryn at 11:14 AM on April 23, 2011 [1 favorite]

If she has Chronic Fatigue Syndrome, which is often thought to be associated with EBV

This hasn't really been the case for the better part of a decade in research and informed medical circles: the proposed link between CFIDS and EBV proved to be a dead end.
posted by Lentrohamsanin at 12:25 PM on April 23, 2011

Oh derr, second part of your sentence, right there. Sorry, bit of a hot button issue for me.
posted by Lentrohamsanin at 12:26 PM on April 23, 2011

Best answer: Yeah, that definitely sounds like a topic you're going to find all sorts of information with varying levels of reliability about on the internet.

What about looking someplace like this for a doctor? Just have to make sure you're dealing with an MD who does clinical work in infectious diseases, and not an oncologist or PhD/researcher only.
posted by treehorn+bunny at 1:07 PM on April 23, 2011

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