Treatment for chronic Epstein-Barr virus (EBV)

Hi Sue, I'm 64 and last year told my sister I thought I was dying. Fast forward a year and I am much better. I found a wonderful NP at an intregrative medical office that has helped so much. You have to find someone knowledgeable with EBV, thyroid and all the other components. I found out via a stool test I am also highly gluten intolerant and a few other things that go along with it. You can get better!!

i have chronic active ebv and the only way i would get better is if i could find a functional doctor who would take my insurance around here but no such luck. they are all about money and hundreds of dollars. so i guess ill have to suffer lol. senior in ill health. God is my physician now, he is the only one who can heal whats wrong with me and he wont charge me a thing.

Hello, I am interested if anyone has perspectives to share on how to manage.... I am a 49 year old male who is in excellent shape and started experiencing extreme fatigue 7 months ago, after a terrible cold that lasted a month. In addition to the fatigue I was having asthma like symptoms, chest pressure, pounding heart feeling and mental fog/clarity/confusion issues. A round of oral steriods knocked the symptoms out but they quickly returned once off the prednisone. Specialist visits, blood tests, tests, MRIs etc let me know what I didnt have (no cardiac issues, no asthma, no MS, etc), but no clarity on what was happening. Finally, 3 months in, in my third round of blood work I tested positive for active EBV infection (it didnt show up in the prior 2 tests but my PCP that EBV could be the cause so he kept retesting). I have found that Symbicort, which I was given early on for the potential asthma, makes my symptoms much more manageable. I am still extremely fatigued, requiring 9+ hours of sleep plus a 30-90 minute nap everyday between 2-5pm, depending on my level of activity (I know its time to sleep as my head “buzzes” and I get a sore throat), but I can work at my job, live life and do some level of light excercise-swimming for 15 mins, occasionally. Without the Symbicort I am non-functioning, unable to work / live daily life due to lack of mental sharpness and other symptoms. PCP says the small amount of steroids in Symbicort may be helping me address the inflammation and associated symptoms. I am concerned that by masking the symptoms I may be pushing myself too much, postponing actually getting better but I’m concerned about losing job, being non-functioning for my wife/kids if I just go off of it. Even missing one dose creates a dead zone in my day. I have adjusted my diet (no alcohol, caffeine, eggs, daily, gluten) to try to improve immune system etc but curious if others have better ideas given the circumstances. PCP says to just wait it out and should be gone after 12 months. Thanks for any thoughts.

Howdid you finally get tested. Seems difficult to find a Dr who will do this bloodwork.

You can order tests yourself online at walkinlab.com. (that's walkinlab dot com in case they don't allow websites to be posted).

The EBV-related tests offered at walkinlab.com do not appear to detect EBV DNA, the test of choice (as stated in the following article as well as other articles).
See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5770746/

"we have found that elevated levels of EBV DNA in the blood are more specific for CAEBV than elevated levels of EBV antibodies. Most laboratories now perform ELISA tests for EBV antibodies, and these are often less helpful than the previously used quantitative immunofluorescent assay using endpoint dilution of serum. It is important that DNA PCR is done using either whole blood or peripheral blood mononuclear cells, rather than plasma or serum which is much less sensitive for diagnosis of CAEBV disease."

I feel your sons pain! I have had mono a total of 9-10 times but in the last 2 years it has hit me twice a year with full blown. I have been tested positive for EBV virus couple of times to. Nothing I do seems to work. I kicked my doctor to the road and my GI doctor has said there is something going on. He has been concerned more than my regular doctor. I’m tired ALL the time, no energy. He has put me on a multivitamin with minerals and said I should see a difference in 7 days I will know by Tuesday if working but as of right now I see no change. He is recommended me to the Mayo Clinic to see if there is anything that could possibly help me. Daily injection or anything. At this point I’m up for anything I don’t care how far I have to go or the cost! I would just like to have some energy. There has to be something they can do. He is wondering if I have a auto immune issue. So praying I get in to see someone and they can help!
Prayers for anyone going through this!

Thank you so much. I’ve started the lysine and monolaurin. I see immunology soon but I have a feeling it will be a waste of time. Hopefully she’ll at least give me the antivirals, my primary will not. Thanks again

I’ve been battling health issues for years, but I went to the dr with increased fatigue, heart palpitations, I’ve collapsed a few times. She said it’s incredibly rare but I’ll test you for caebv. Loads of labs and here I landed. The labs came back with a huge “caebv” across the top. Thanks for the link, I’ll check it out

I had mononucleosis in high school, got diagnosed with chronic fatigue syndrome and Epstein-barr at age 19, later diagnosed in early 20s with multiple sclerosis, Found that I actually had Lyme disease 25 years later, and now I am dealing with a very active reoccurrence of Epstein-Barr and have basically missed work and been bedridden for a month and still very fatigued. The book titled “medical medium “ by Anthony William has a very good strategy for Epstein-Barr and is the first book that actually makes sense and addresses this insidious virus. He provides a treatment plan, involving nutrition, Got health herbs, supplements, cleansing to Detoxify the Epstein-Barr load in your liver, spleen, blood and other organs. Is the first true hope that I have to really get over this illness.