1. < Infectious Diseases

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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joyisjah | @joyisjah | Feb 8, 2018

Hi there. Can you reply thru email -am most interested in your progress with your son since last year. Thx Janeen

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 8, 2018
In reply to @lynnieb1 "Cummings3, Yes please keep us posted if this helps. One thing I have learned is it's..." + (show)
@lynnieb1

Cummings3, Yes please keep us posted if this helps. One thing I have learned is it's up to us to find answers to this illness. My son did see a infectious disease dr but he just said to rest and he will eventually get over it. It's been 9 months and he feels the same. No better. I think the bodies immune system thinks it's healed. He is trying an extreme diet to cut out sugar and processed foods, some herb remedies and a colon cleanse. We will see a neurologist next. He has seen an ENT, eye dr, infectious desease dr, internist, allergist, and has had an MRI. Everything come out normal except that he had recent EBV. We will see a neurologist next, his main symptom is extreme fatigue that sleep will not cure, blurred vision and concentration problems. Please keep me posted and anyone else that has advice. I think we are alone in this.

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Hello Janeen (@joyisjah), Welcome to Mayo Connect. We are glad you found us. Connect is a good place to share your health concerns, ask questions and learn what other members with similar health concerns are doing for treatments. From your post I was not sure which member you were asking if they could feel comfortable corresponding through email. Normally in long discussion threads it's a good idea to use their Connect username (@username) which will send them a notification along with your post.

Members can send private messages (PM) and if they are comfortable exchanging personal email addresses. I think this is a good way to stay in contact with other members but I would urge members to consider if the information being shared would benefit or help other Connect members. Sharing what works for you really helps others that are seeking answers and is much appreciated. If you want Step-by-step instructions to help you get the most out of Connect see the following page:
-- https://connect.mayoclinic.org/get-started-on-connect/

Janeen, if you are comfortable sharing, can you tell us what helps or what you've tried for treatment for EBV?

John

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Feb 8, 2018
In reply to @joyisjah "Hi there. Can you reply thru email -am most interested in your progress with your son..." + (show)
@joyisjah

Hi there. Can you reply thru email -am most interested in your progress with your son since last year. Thx Janeen

Jump to this post

Hello @joyisjah,

I see that you are wondering how @shellr13 son is doing since last year. You mention replying by email. It is important to remember that posts on Mayo Clinic Connect are public, but should you choose to want to communicate privately with a member we recommend using the private message function by clicking on a member's username. If you are comfortable talking publicly, sharing your experiences and listening to others' experiences is what makes Connect valuable. We often don't feel like what we have to say is of value to others, but it is amazing what your experiences can mean to other members.

It is also important to remember that if you are replying by email, it still shows up in the public discussion, so I always recommend clicking on VIEW & REPLY to see the whole discussion on the website.

@joyisjah, if you are comfortable sharing with the group, are you experiencing symptoms of EBV? How are you managing them?

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dandy | @dandy | Feb 10, 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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First of December I woke up with my right hand stiff, swollen, painful and unable to use my fingers. Be the end of the day, EVERY joint and bone was painful. I could nothing. Doctor thought it was Parvo virus B 19. After three weeks, no change. Tested positive for EBV. Which is strange, because I'm 61 and a nurse. Surely, sometime in my life I would have been exposed to it. I manifested itself as a rheumatoid arthritis flare. The only thing that would give me a little relief was the oxycontin I had left over from spine surgery. Imagine lying in bed cold, but you can't pull the cover up because of the pain on your fingers, wrists, elbows, shoulders because of the pain. No toliet hygiene unless husband helped me. I did notice that taking the 10 grams Vitamin C did help.

REPLY
nacc | @nacc | Feb 20, 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

Jump to this post

Hi, thank you for writing this. I came down with extreme fatigue. I was tested for EBV and I have a case where I was never exposed to it
until now. I've had it for 6 months. I can't hardly do anything. I need help and don't know what kind of doctor to go to. My PCP wasn't too nice my last visit. Just said it's like you have mono, and it will take awhile to get over. I don't know how to proceed to get help with this.

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nacc | @nacc | Feb 20, 2018

Hi, Johnathan. How are you doing? I feel the same way. I feel like I am not living life at all because I can't do anything. There seem to be no answers, for what to do about EBV. I don't know what to do. I sure hope you're feeling better. Take care.

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Jennifer | @megan123 | Feb 21, 2018
In reply to @kschmoyer9 "Hi EBV sufferers! I wish I had seen this earlier, but I just came across it..." + (show)
@kschmoyer9

Hi EBV sufferers! I wish I had seen this earlier, but I just came across it today. First of all, I want you to know that you're not alone in your misery. I was a senior in high school when I had my first episode of mono. I ended up missing almost half of the school year. Couldn't stay awake. No energy. My whole body was affected. At age 22, it happened again. The doctors gave me prescriptions for to combat the fever, upper respiratory, headache, sinus infection, etc., but nothing helped! I went to another doctor for a second opinion and after an examination and some other tests, the diagnosis came back as Epstein Barr Virus. Unfortunately, I also found out that I would have to live with this for the rest of my life and I had even higher chances of developing mononucleosis again and again and again. I never know when this virus is going to rear its ugly head, but finally, after 30 years of struggling I have my life back. Two years ago I was at the end of my rope. A friend of mine introduced me to some of the most amazing supplements from Plexus Worldwide that I have ever tried.

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What type of tests r done to diagnose

REPLY
dandy | @dandy | Feb 22, 2018
In reply to @kschmoyer9 "Hi EBV sufferers! I wish I had seen this earlier, but I just came across it..." + (show)
@kschmoyer9

Hi EBV sufferers! I wish I had seen this earlier, but I just came across it today. First of all, I want you to know that you're not alone in your misery. I was a senior in high school when I had my first episode of mono. I ended up missing almost half of the school year. Couldn't stay awake. No energy. My whole body was affected. At age 22, it happened again. The doctors gave me prescriptions for to combat the fever, upper respiratory, headache, sinus infection, etc., but nothing helped! I went to another doctor for a second opinion and after an examination and some other tests, the diagnosis came back as Epstein Barr Virus. Unfortunately, I also found out that I would have to live with this for the rest of my life and I had even higher chances of developing mononucleosis again and again and again. I never know when this virus is going to rear its ugly head, but finally, after 30 years of struggling I have my life back. Two years ago I was at the end of my rope. A friend of mine introduced me to some of the most amazing supplements from Plexus Worldwide that I have ever tried.

Jump to this post

Blood test and looked over by a pathologist.

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michellebelle | @michellebelle | Feb 23, 2018

Having EBV is very frustrating. I have been battling this for more than six months. I had heard some time ago about an Ultra Violet treatment that my girlfriend had over 25 years ago. It took me a long time to finally find a doctor here in Florida who offers this treatment. I believe my two doctors were just assuming I would get better over time and weren't recommending additional treatments. Well I got tired of waiting. I started the five week treatments two weeks ago and have also added a hydrogen peroxide IV. I have two treatments a week. I have a bit more energy now and plan to continue the full treatment. I'll keep everyone posted over the next few weeks and let you know if this helps with my chronic fatigue.

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2 replies
lisajensen | @lisajensen | Feb 23, 2018

I have tried 2 UV and Ozone treatments like what you describe. I hope to start up more sessions when I am done with some travel. I will report back as well as to if they help!

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