Treatment for chronic Epstein-Barr virus (EBV)

Posted by cummings3 @cummings3, Jan 23, 2017

My son has been suffering with Epstein-Barr virus (EBV) for over a year. I have taken him to an immunologist and infectious disease doctor with no answers. He is always tired and never feels well. He has relapsed with Mono twice in the last 10 months.

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michellebelle | @michellebelle | May 5, 2018

In reply to @ebv2008 "i GOT DIAGNOSED IN 2008 AND i AM 53 AND MY LIFE HAS NEVER BEEN THE..." + (show)

@lrymer, Just checking in to see if you followed the MM diet and what are the results? I've always had a healthy diet but haven't tried the cleansing diet. I want to hear from others that the effort is worth it. I'm not apposed to the food items I would rather eat my vegetables (celery) than drink it. I'd love to hear from everyone.

Lisa Lucier | @lisalucier | May 5, 2018

In reply to @ebv2008 "i GOT DIAGNOSED IN 2008 AND i AM 53 AND MY LIFE HAS NEVER BEEN THE..." + (show)

Hi, @greenygirl1 -- welcome to Mayo Clinic Connect.

Your post was very short. I'm wondering if you could elaborate a bit? Do you have chronic Epstein Barr?

greenygirl1 | @greenygirl1 | May 6, 2018

have u tested him for other viruses? tried supplements? antivirals?

greenygirl1 | @greenygirl1 | May 6, 2018

In reply to @ebv2008 "i GOT DIAGNOSED IN 2008 AND i AM 53 AND MY LIFE HAS NEVER BEEN THE..." + (show)

what have u tried?

greenygirl1 | @greenygirl1 | May 6, 2018

In reply to @nacc "I was diagnosed with a new infection of EBV at the age of 61> I got..." + (show)

have u tried antivirals?

greenygirl1 | @greenygirl1 | May 14, 2018

In reply to @jenchaney727 "Hi @cummings3! I too know how frustrating it is. I had an infectious disease doctor laugh..." + (show)

@jenchaney727

Hi @cummings3! I too know how frustrating it is. I had an infectious disease doctor laugh in my face and tell me to stop going to doctors because she believes there is no such thing as chronic EBV. My PCP recently gave me this protocol (below are her direct notes), which she says several patients have had great success with. I haven't started it yet due to other GI issues, but I'm planning to try soon. It's all natural supplements, so I'm comfortable sharing, but you may want to check with your doctor and make sure no conflicts with anything else your son might be taking.

Chronic Epstein Barr Virus Infection:
- This is a reactivation of an old EBV viral infection and is not contagious.
- Discussed starting on sambucus or sambucol 2 tsp 3x day for a couple of months or one of the lozenges 3x/day, then can go down to once daily for one more month which has been shown to help shorten viral duration and decrease severity of symptoms in certain viral infections including EBV.

- Vitamin C is a cofactor in the viral immune system - can take as much as 900-1000 mg once-twice daily.

- Quercetin has studies showing its ability to help the body fight the early antigen of the epstein barr virus. Dose = 1000-1200 mg daily

- N-Acetyl Cystine (NAC) is an antioxidant that can help with nerve function and memory. Dose : 600 mg once daily

NOTE: There is a combination product called Di-Hist or Nu-Hist that has Quercetin, NAC and Vitamin C in it which is convenient but slightly more expensive than putting together own ingredients. Can be gotten from Apothecary shop or online.

- To help with fatigue, discussed using 5 gm (5,000 mg) ribose 3 a day for 3 weeks, then 5 gm twice a day for 6 weeks to see the full clinical effect. We have patients get a 280 gm container of ribose (Corvalen from Douglas labs) as a therapeutic trial. http://www.endfatigue.com/tools-support/D-ribose.html - can order on line from this website (and the endfatigue.com has a good write up of some of the research) or can go to amazon and put in Corvalen or D-ribose by Superior Fuel.

- Discussed may take up to 3 months (or longer) for full effect. Once feeling better, slowly stop the medications (stop the quercetin first, then NAC, then vitamin C, then the sambucol- as an example). Would not stop the supplements till has been feeling well for 4 weeks.

@kanaazpereira, @suesiegel, @arriba, @aman_23_23, @copiela, @jatl, @cheryldotson

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lrymer | @lrymer | May 14, 2018

In reply to @ebv2008 "i GOT DIAGNOSED IN 2008 AND i AM 53 AND MY LIFE HAS NEVER BEEN THE..." + (show)

@michellebelle I have yet to try it, just getting into the second book. I bought my juicer and a food processor so I have all intention to give it my best. I feel like I need it spelled out in an easy format for me.

lauraeinga | @lauraeinga | May 24, 2018

In reply to @nacc "I was diagnosed with a new infection of EBV at the age of 61> I got..." + (show)

unfortunately, the way CAEBV works, antivirals don't work - at least that's what I've found in my research.

lauraeinga | @lauraeinga | May 24, 2018

My husband developed CAEBV about a year ago and we've been trying to get in to see an ID Doc for almost a year. I have a feeling its a waste of time though because we don't have the best and brightest in my town. there is very little information and research on this virus in the medical literature, unfortunately, BUT they are looking for candidates for studies. I'm discussing that possibility with my husband. in the meantime ANY helpful strategies to deal with this debilitating illness is greatly appreciated!

michellebelle | @michellebelle | May 25, 2018

In reply to @lauraeinga "My husband developed CAEBV about a year ago and we've been trying to get in to..." + (show)

Laura, I just read your post and as another adult with CEBV I was curious about the studies you spoke of. I'm always looking for new and old treatments. I hate to accept my conditions, just spent the whole day in bed unable to do anything. That's for passing on any information.