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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jbri | @jbri | Jul 22, 2020

A quick note to suggest taking K2 with your D3. When my dermatologist learned I was taking D3, she told me I needed the K2 to help absorb the D3. Do you take Zinc daily?

lisajensen | @lisajensen | Jul 22, 2020

In reply to @jbri "A quick note to suggest taking K2 with your D3. When my dermatologist learned I was..." + (show)

Yes zinc daily.

dquick | @dquick | Jul 29, 2020

In reply to @mblack "Yes, it absolutely effects your neurological state along with your body. I finally got one of..." + (show)

My EBV nuclear antigen ab,IgG is >600.0 U/mL which seems high based on positive is >21.9 but my doctors say it’s nothing. Been on disability almost 3 years for severe fatigue, legs tremors and weakness. Still no answers. Anyone higher than >600.0 U/mL?

michellebelle | @michellebelle | Jul 30, 2020

dquick,
Yes my EBV Antigen ab has been over 700 for three years. I keep expecting I would see the numbers change but they don't seem to. I was diagnosed over three years ago and my test results don't change much. I have good days and not so good days. Not as bad (bed ridden) as I was four years ago but never back to my old energetic self. MBS

grasshopper123 | @grasshopper123 | Aug 26, 2020

Looks frightening...any thoughts?

John, Volunteer Mentor | @johnbishop | Aug 26, 2020

In reply to @grasshopper123 "Looks frightening...any thoughts?" + (show)

Hello @grasshopper123, You will notice that we merged your new discussion into the Treatment for chronic epstein barr discussion so that you can meet @dquick, @mblack, @michellebelle, and other members discussing test results and treatments for chronic epstein barr disease. If you click the VIEW & REPLY button at the bottom of the email notification it will take you to the discussion.

I think most test results are not really written with patients in mind and can be confusing at the least. What about the test results looks frightening to you? Have you discussed the results with your doctor?

grasshopper123 | @grasshopper123 | Aug 26, 2020

Hello... Thankyou. The numbers seem so much higher than the “normal” range. I haven’t been tested for a year until this last test. I’m confused as to why she is calling it chronic. Isn’t there a specific test to determine this?

sswonger | @sswonger | Sep 3, 2020

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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Have you guys found anything else to relieve the EBV symptoms?? How are you doing now? Did the supplements help?

sswonger | @sswonger | Sep 3, 2020

In reply to @johnbishop "Hello @grasshopper123, You will notice that we merged your new discussion into the Treatment for chronic..." + (show)

Where can I find the Chronic Epstein Barr virus discussion or is this it?

sswonger | @sswonger | Sep 3, 2020

In reply to @johnbishop "Hi @cedar234, Welcome to Mayo Clinic Connect. I have no medical background or training but from..." + (show)

Bloodjournal.com (non-Hodgkins lymphoma)

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