Doctor Recommendations for Chronic active Epstein–Barr virus (CAEBV)

Specialists involved in the care of someone with CAEBV may include:
- Infectious disease specialist
- Immunologist
- Hematologist

Tagging fellow members, like @nataliem @mblack @jbri @dquick @michellebelle @kkathysan @lisajensen and others for their recommendations of centers that treat EBV.

Grasshopper, what specialists have you seen?

Can anyone tell me what is fact for sure what is the survival rate for someone that has been diagnosed with Cronic Epsteen Barr Virous,

Do you mind sharing what the naturopathic doctors have advised that has helped you? I’ve only seen traditional doctors that have not helped. They think if your bloodwork is fine, then you must be fine. So far from the truth! I have heard of a place around Nashville that specializes in chronic fatigue, but it’s expensive. I found it online about a year or more ago. I don’t know what kind of results they get.

I had stage 5 EBV when I was 17 where I was in a coma, convulsed and vomited regularly. They tapped my Madula; I convulsed during the "24 hr stay flat" period and ended up loosing my speech and ability to walk or stand. I am now 70 but for the last 5 years I have been getting EBV again. Most recently after COVID vaccine I was down for 3-months of sleeping and horrible leg pain, foggy brain and no appetite. 6 months later (and 6-months ago) I got COVID and it took me down further. My liver is enlarged, I eat half my meals, I drink a gallon of liquid a day, pool aquatics 3x's a week, climb stairs and take care of my paralyzed husband. I sleep 11 hours each night and nap 2-hrs. in afternoon. My leg and ankle pain gets so bad, even sitting is not a good position. I elevate my legs super high B4 bedtime for 30 mins, 1-Melatonin, 2-CBD gummies and 2-accedaminaphin before bed just to stay asleep and not be awakened with the pain. My test last year shows the same numbers as last year EBV VCA lgG 138 U/ML, EBV VCA lgm 10 U/L, EBV NUCLEAR Antigen, IGG 51.6, EBV EA lgG 79.6. My numbers were about the same last year with little or no change. I am now green juicing and still eating chicken and veggies at night. I am exhausted and walk periodically for about 15 minutes and then have to lay down, not sit down, I am in too much leg pain. Please help me, I am in deep need of a form of relief. I know liquor is quicker and it does put you out of you pain, but I also know if you have EBV it is not the preferred treatment. No, I am not drinking.

I am looking for a doctor who specializes in CAEBV and takes insurance. I am currently seeing an Integrative Medicine doc, and have had some improvement - but he does not take insurance and I am running out of funds. So it is go broke or let nature take its course. Neither choice is acceptable.

I have had high EBV titer since being diagnosed with ME/CFS over 30 years ago. I have a Primary Care Doctor,
Cardiologist, Nephrologist, Endocrinologist. Not one of these people has suggested any treatment for EBV or suggested seeing another type of doctor. The information I get from these people is that there is no treatment. Also, no one seems to know what EBV can cause. All this is puzzling to me particularly since I started participating in the Mayo Connect groups and have discovered so many people who have high titers. It seems
rather strange. Are there Mayo physicians doing research on what this disease can do to the body and how it
affects immunity? Are there physicians anywhere doing this research. If there are, they're not publishing material available to the the general public and apparently physicians don't know about this research or, I hate to say this, don't care about it. Tests for EBV should be included on all yearly blood tests that are given as part of wellness exams. They aren't. If they were, a pattern might develop. In the meantime, all of us with high titers are left to research on our own. Very peculiar for something that turns out to be fairly common and could affect our well-being. Also, consider the fact that we're in the midst of a Covid epidemic. None of this makes sense.