Treatment for chronic Epstein-Barr virus (EBV)

Do you mean on the actual lateral border of the tongue at the back? Can you see them swollen?

Hello everyone-

New member here-I signed up because I am desperate. I've just been diagnosed with CAEBV. I know it's serious, I know it's rare. I think I'm in shock. I can't believe I'm never going to get better. I feel absolutely terrible. It seems to alternate-one day I'm ok, the next is rock bottom. No rhyme or reason-I'm trying to duplicate my feel good days as far as food, supplements, sleep, etc....but it isn't working. Please, has anyone been diagnosed with this? Please also know the difference between CAEBV and EBV-Mono-Reactivated EBV. I need help, I need hope. Thanks in advance.

Hi @tmccarthy2019 and welcome to Connect. You may have noticed I moved your post to this existing discussion on Chronic Epstein-Barr Virus so that you can connect with others who are dealing with this condition. Simply click VIEW & REPLY in your email notification to take part in the conversation.

Receiving a new diagnosis is always a lot to take in so I wanted to introduce you to fellow Connect members, @momnxtdr @smcivor94 @mrmie @lisajensen @sherryntn and @michellebelle as they all have experience with CEBV and may be able to offer you support and your learn to understand your new diagnosis.

I also encourage you to read back through this thread, so that you can learn what others have said about Epstein-Barr.

Back to you @tmccarthy2019 what are your symptoms at this time?

@ethanmcconkey thank you for your reply. My symptoms are debilitating fatigue, fevers, I feel like I have the flu. Sore throat, swollen glands, etc I was told to stay away from high risk folks, to treat myself as if I’m immunocompromised, and no lifting. It just seems like I should be doing more, to feel better I mean. There’s not much on the internet re: CAEBV, so I’m not sure where to go from here. I’m waiting for the referral to the infectious disease/immunology Dr

Also, I’m not sure if the same rules apply, CEBV vs. CAEBV

@tmccarthy2019 Your symptoms sound like what I had years ago Infectious mono.

@lioness exactly how it feels, times 1000. but I’ve already had mono. And my liver function tests are wonky, and something is up with my platelets off and on. I’ve never felt so bad 🙁

@tmccarthy2019 I'm so sorry but your right to see an Infectious Dr hopefully he will be able to get to the bottom of what you have

@tmccarthy2019 Here is just a bit of what I can recommend. Unfortunately you need to read through this web site and gleen what you can from previous comments. It's time consuming but worth the time. No one person can give answers. So to answer one quick last question above... I think Chronic Epstein Barr Virus, and Chronically Active Epstein Barr Virus are the same. Next it was important that you mentioned that you had mono before. Because first time mono does not mean that you have to worry about it becoming a chronically active virus. Next, continually keep in mind that this is a virus. When ever you get confused... Look for treatments that are specifically for a virus. Next, don't worry about being infectious. Usually you are only infectious the first time you have mono. Chronic EB Virus is not infectious! Next, find a good Naturopath. No other type of doctor knows anything about CAEBV. Do not go to infectious disease docs. They will not help you. What I have found to help the swollen lymph glands and fatigue are daily:
500mg L-LYSINE or more for the virus
Good quality Vitamin B-12 and B-6 for energy
Vitamin C
Alpha Lipoic Acid for cell renewal
Some people have found luck with Monolauren
A prescription med of Acyclovir has helped many.
I do hope this information assists you. Best to you.
Lisa

Lisa: This is one of the best -- and to the point -- explanations about CEBV/CAEBV that I have read in a long time. Thank you very much.