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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cummings3 | @cummings3 | Jan 12, 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, I wanted to follow up with you on my son's progress. As I discussed in November-my son was referred to a neurologist that specialized in the autonomic nervous system and she feels that the EBV has damaged the Autonomic Nervous System. This was after 2 years of extensive testing from Infectious Disease and Autoimmune. He was denied being seen by the Mayo Clinic and the Cleveland Clinic the past 6 months. She has put in on Alpha Lipoic Acid (Antioxidant to reverse damage) and Mestinon ( to control heart rate variability). We also started working with a well known Chiropractor that is working on his Parasympathetic system and vagus nerve. My son has shown a slight improvement after doing these treatments for 8 weeks now. He goes back for follow-up testing in February and she may want to start him on the Alpha Lipoic Acid IV therapy to absorb more into the system quicker. This is the first time that we have had any hope and I am praying that it continues to help him! I will keep you posted on upcoming results. Good luck to you- I know as a mother how frustrating this is!

REPLY
lynnieb1 | @lynnieb1 | Jan 12, 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.

Jump to this post

Hello and thank you so much for your response. I will share this with the neurologist we are seeing in February. What treatment is the Chyropractor doing, I know they tend to do more therapy for symptoms?

REPLY
rengher | @rengher | Jan 12, 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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Hi @jenchaney727! Thank you so much for this information. I just was tested for EBV after 20 years of suffering from fatigue. My naturopath says I have a chronic infection so I will share this protocol with her.

REPLY
Jamie Olson | @jamienolson | Jan 13, 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 @rengher. Welcome to Mayo Clinic Connect. Sorry to hear you have suffered for 20 years. That's a long time.

Let us know what your naturopath says. I'm interested to hear what she will do with the information and what will be put into place for you. Keep us updated on how you are feeling during treatment. Hopefully what you report back to the group will help another member.

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jluster7 | @jluster7 | Jan 17, 2018

Our daughter is 19 and she first was diagnosed with mono 2 years ago. She was diagnosed again last August (2017). She has had a positive EBV titre for the past 5 months. We just got the results of her latest test today, and we're so disappointed that she still has it. She has been trying to continue her education in massage therapy, but she is completely wiped out after a short time. We're desperately seeking information and advice on how to treat, control, or manage this disease.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jan 17, 2018

Hello @jluster7 -- Welcome to Mayo Connect. Thank you for being a strong advocate for your daughter. Connect is a good place to ask questions and learn what others with similar health problems are doing for treatments. I’m tagging @clghanimo @jenchaney727 @suesiegel @arriba @copiela @jatl @cheryldotson @cummings3 @aman_23_23, who have all discussed Epstein-Barr Virus (EBV), and I’m hoping they will be able to offer some more insight.

Here are a few conversations on Connect that you may find useful:
– Chronic Pain members – Welcome, please introduce yourself http://mayocl.in/2tz0bcE
– I just need some answers!!! Please help me!!! http://mayocl.in/2uf42sH

More information from the National Institutes of Health on the Epstein-Barr Virus treatment:

Optimal Treatment for Chronic Active Epstein-Barr Virus Disease
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2776035/

I'm not sure if it is an option for you but if you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here: https://www.mayoclinic.org/appointments

John

REPLY
lisajensen | @lisajensen | Jan 31, 2018

This is my first time.posting to this site. I am 60 yrs old and have been experiencing chronic EBV after contracting mono about 7 years ago. I just got another big flair up about 6 weeks ago and am ready to try natural suppliments as my doctor's also say nothing can be done. I will start trying several of the ones mentioned here right away! Thank you. I also am getting UltraViolet and Ozone therapy once a week where they hook me up to an I.V. for about 20 minutes and apply UV light and Ozone to my blood stream which is supposed to sort of kill the virus. If you Google the treatment, it is a medical procedure that has been around for years. HAVE ANY OF YOU TRIED IT OR HEARD OF IT? I have had one treatment and have 6 more to go. Also have any of you tried oxygen therapy to help relieve the tiredness and gland swelling such as the type you can get in day spas? My glands are constantly swollen.

REPLY
3 replies
michellebelle | @michellebelle | Jan 31, 2018
In reply to @lisajensen "This is my first time.posting to this site. I am 60 yrs old and have been..." + (show)
@lisajensen

This is my first time.posting to this site. I am 60 yrs old and have been experiencing chronic EBV after contracting mono about 7 years ago. I just got another big flair up about 6 weeks ago and am ready to try natural suppliments as my doctor's also say nothing can be done. I will start trying several of the ones mentioned here right away! Thank you. I also am getting UltraViolet and Ozone therapy once a week where they hook me up to an I.V. for about 20 minutes and apply UV light and Ozone to my blood stream which is supposed to sort of kill the virus. If you Google the treatment, it is a medical procedure that has been around for years. HAVE ANY OF YOU TRIED IT OR HEARD OF IT? I have had one treatment and have 6 more to go. Also have any of you tried oxygen therapy to help relieve the tiredness and gland swelling such as the type you can get in day spas? My glands are constantly swollen.

Jump to this post

Lisa,

I'm glad you shared your story. It is similar to mine in that I am a 63 year old who has been battling chronic EBV for the past six months. I believed I had mono many times in my adult life but just wrote it off as the flu. My blood tests show recent mono infections.
I do know someone who had the UV light treatments over twenty years ago in NYC. She fully recovered, though she wasn't sure if it was this blood cleansing that cleared it up. I didn't know they still did this therapy and would love to hear more about it. I don't know anything about the oxygen therapy but would sure love to get some help with the tiredness. I've had a major life style change and would love to get some of my energy back. Where does your doctor practice who is conducting these treatments? No one here including the Mayo and Cleveland Clinic seem to have a treatment plan for this illness. Thanks for taking the time to reach out.

REPLY
lisajensen | @lisajensen | Jan 31, 2018
In reply to @lisajensen "This is my first time.posting to this site. I am 60 yrs old and have been..." + (show)
@lisajensen

This is my first time.posting to this site. I am 60 yrs old and have been experiencing chronic EBV after contracting mono about 7 years ago. I just got another big flair up about 6 weeks ago and am ready to try natural suppliments as my doctor's also say nothing can be done. I will start trying several of the ones mentioned here right away! Thank you. I also am getting UltraViolet and Ozone therapy once a week where they hook me up to an I.V. for about 20 minutes and apply UV light and Ozone to my blood stream which is supposed to sort of kill the virus. If you Google the treatment, it is a medical procedure that has been around for years. HAVE ANY OF YOU TRIED IT OR HEARD OF IT? I have had one treatment and have 6 more to go. Also have any of you tried oxygen therapy to help relieve the tiredness and gland swelling such as the type you can get in day spas? My glands are constantly swollen.

Jump to this post

Thank you for your reply as well! I am getting the therapy from a nurse in Phoenix/Tempe Az (I live in Prescott) who is also a Naturopath. Patti Woodridge 602-570-1493 Light Works Photo Therapy. Where ever you live, I would start by calling Naturopath offices to get a referral on who does this treatment near you. I am going to try oxygen therapy soon and will let you know if it helps with energy levels!

REPLY
shellr13 | @shellr13 | Jan 31, 2018

i am in the same boat with my son but now he is 21! We are going back today to get him tested for the 5th time in 3 years. Always tests positive. He does heavy lifting at work and now his spleen is hurting. If someone can help us It sure would mean the world to me. He is too young to stay so run down.

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