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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matthewhouston95 | @matthewhouston95 | Mar 15, 2025

In reply to @markco1234 "I just looked up S.O.T. therapy, it looks interesting and will call Florida Integrative Medical Center..." + (show)

I haven't. I'm looking to try vitamin c Iv therapy next week. It's shown some effectiveness. I'm hopeful it will help

markco1234 | @markco1234 | Mar 15, 2025

In reply to @matthewhouston95 "I haven't. I'm looking to try vitamin c Iv therapy next week. It's shown some effectiveness...." + (show)

I've read good things about IV vitamin c therapy also. Have you tried S.O.T, I've been researching it and it looks really promising? Message boards are a great source of info, thanks for posting S.O.T.

matthewhouston95 | @matthewhouston95 | Mar 15, 2025

In reply to @markco1234 "I've read good things about IV vitamin c therapy also. Have you tried S.O.T, I've been..." + (show)

I haven't tried s.o.t simply cuz it's unaffordable for me. If I wake up rich tomorrow I'll pursue it. But I really hope it works and it helps a lot of people. People don't seem to realize that ebv/mono is a real life changer. I've been a strong guy my hole life. My immune system beat h1n1 and covid twice. But mono just seems to be the one my system can't control as well. I really hope it can soon though. I'm only 29. I got a lot of life still to live and I wanna live it healthy if I can

hooleys | @hooleys | Sep 18, 2025

In reply to @kanaazpereira "Hello @cummings3, I'm sorry to hear about your son's diagnosis, but I'm so glad you chose..." + (show)

Hello,
My son is 21 he has been battling EBV for two years. I have taking him to all types of doctors including holistic. He is on many supplements. He even eats very clean and believes it helped a lot. He has chronic fatigue every day. Initially it started with heart palpitations so I took him to a cardiologist. From there we learned he had EBV.

kkathysan | @kkathysan | Nov 5, 2025

I have found that this site gives a lot of information on how to supplement for combating the effects of EBV. You might want to give this a try if you are not already getting the help you need, or the results you would like.
https://ebvhelp.com/high-dose-vitamin-c-for-ebv-recovery/
https://ebvhelp.com/
Kasia Kines has her Doctorate in Clinical Functional Nutrition. She supports the whole person with nutrition and lifestyle interventions. She is not a medical doctor and does not diagnose or treat diseases.

God Bless,
Kathy

suannie | @suannie | Dec 29, 2025

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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@jenchaney727 thank you for sharing. I too have CAEBV. I just found out a couple of years ago that it had become chronic. I contracted mono when I was just 13 years young. I’ve had a plethora of health issues that collectively became triggered after coming down with covid in 2020. I struggled for many years with IBS , CF and Fibromyalgia . I recently passed kidney stones and inadvertently found out that my gallbladder was full of stones. Four to be exact each the size of a quarters. The doctor said I had had them for a long time to have been that large and we chose to have my gallbladder removed. I’ve been feeling somewhat better but now I’m having pain in by left flank and under left my rib cage. I need to see an Infectious Disease Specialist to get to the bottom of my issues. I have been diagnosed with Undifferentiated Soft Tissue disease which essentially is the doctors way of saying that it’s not yet Sjourns, Lupus or MS. I want to be well and I am to find that path. I will be trying the doctors protocol and truly hope to feel well sooner than later. Prayers for you and all that are struggling. I may add that I intend to do a parasitic cleanse as well.

mimi548 | @mimi548 | May 16 10:32am

Im looking for treatment solutions!
I’m 52 years old and have been knowingly battling chronic Epstein Barr virus since I was 40. Doctors treated me for strep for 6 months before confirming it was Epstein Barr. After two years of active EBV I was referred to the CDC in Atlanta and that doctor only wanted to treat me for depression, anxiety, sleep disorders. None of which were my problem. I was in the busiest season of my life at that point as a teacher/coach, a mother of two young kids who were active in school and travel sports and a husband of a college/professional coach who was constantly out of town in the road. I wasn’t depressed, I was tired and had gained a little weight from a lack of energy and not feeling like being active. I was stressed out from trying to take care of everything, and I wasn’t sleeping well from all the above. I was forced to find a solution on my on! And I’m still looking!
I thought progesterone was a culprit. I tried taking birth control pills continuously for several cycles to keep it level and it helped but not a solution.
It took over two years, numerous supplements, a lot of rest, and a lot of exercise to finally get to feeling better.
I always feel fevered and chilled, if not in sweats. Menopause has added extra complications.
I’m looking for treatment solutions. It flared up again in October 25, and it’s mid May.
Anyone else been struggling this long???

Imokimok | @haveitall | May 19 12:06pm

In reply to @cummings3 "Wish that I had some great advice for you, also! My son was diagnosed with chronic..." + (show)

@cummings3
I have had this awful disease since I was about 10. I am 58. Diagnosed at about 48. Had lump removed at 30 & they assumed it was cancer, but it was Histiocytosis. Read if u have CAEBV, u will get Histio. My saviors are Tramadol, a daily Acyclovir & Triple-Antibiotic. My flare ups have dwindled to 3 days in bed occasionally if I overdo it. One leg is now shorter & I have had tons of cortisone shots. I put Triple-Antibiotic salve in my nose with a q-tip when going out & don’t get sick anymore! (I got a cold/bronchitis every month b4 this). My partner has cancer & also doesn’t get sick anymore by using it! I have “shocks” in different parts of my body now, localized pain still & cold sores here & there. I am still suffering way too much still & use a scooter, so wanted to see what others do & wanted to share my tmts. I had to come to terms with my limitations, eat healthy & rest often. One dr gave me Presnisone (5-10mg) for vacations & it worked super, but drs all said it will just make things worse. Hoping this can help you all! Teach ur brain that this is ur new normal & just live the best u can!

Imokimok | @haveitall | May 19 12:15pm

In reply to @haveitall "@cummings3 I have had this awful disease since I was about 10. I am 58. Diagnosed..." + (show)

@haveitall P.S. I was getting my masters in teaching when this disease proved too much. I am a sub now due to never being able to work full-time. Literally had to scream my way to get Acyclovir daily and Tramadol came from a dr with a daughter who had Lupus. Otherwise, I would be way worse off. I have to demand tmt from these “drs.” & they demand I see them every 3 months. Horrible cycle, but I look forward to my good days now and “trick” my brain to feeling good. Would love to connect in private if u know how or would like to?

Imokimok | @haveitall | May 20 9:53am

In reply to @matthewhouston95 "I haven't tried s.o.t simply cuz it's unaffordable for me. If I wake up rich tomorrow..." + (show)

@matthewhouston95 Quick note: I had horrible stomach problems my whole life until I started eating pickled foods! Pickle ur own onions, beets, etc with Apple Cider vinegar. Dont get the store kind if it has high fructose syrup or additives. Hope it helps u!

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