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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Colleen Young, Connect Director | @colleenyoung | Dec 8, 2018

In reply to @gjul16 "I have noticed that a number of group participants use and sometimes advocate for a variety..." + (show)

Welcome to Connect, @gjul16. I appreciate very much your adding evidence-based information. I know as a new member, you cannot yet post links to articles, thus allow me to post the links for you here:

1) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3112034/ "Characterization and treatment of chronic active Epstein-Barr virus disease: a 28 year experience in the United States by Jeffrey I. Cohen etal June 2, 2011
2) https://www.frontiersin.org/articles/10.3389/fimmu.2017.01867/full "Chronic Active Epstein-Barr Virus Disease" by Hiroshi Kimura and Jeffrey I. Cohen , Dec 22, 2017

I'll also add a third article from the NIH about chronic active Epstein-Barr virus infection (CAEBV), which states "The only proven effective treatment for CAEBV is hematopoietic stem cell transplantation. If not treated, CAEBV can be fatal."
https://rarediseases.info.nih.gov/diseases/9534/chronic-active-epstein-barr-virus-infection
Gjul, do you also have CAEBV? Have you had hematopoietic stem cell transplantation?

lioness | @lioness | Dec 11, 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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@jenchaney727 You are so right about the vitams
I had a severe case of mono having a rash over my entire body my titer ct was high The Dr put me on bedrest with lots of vitamins..

Marianne | @mrmie | Dec 11, 2018

In reply to @gjul16 "I have noticed that a number of group participants use and sometimes advocate for a variety..." + (show)

Hi @gjul16. Here are a few scientific studies regarding supplementation and EBV. "Effect of high dose vitamin C on Epstein-Barr viral infection." Mikirova D. Med Sci Monit. 2014 and "Mechanism of action of glycyrrhizic acid in inhibition of Epstein-Barr virus replication in vitro." Lin JC, Antiviral Res. 2003. In her book, "The Epstein-Barr Virus Solution," Kasia Kines PhD, sites scientific studies when discussing supplements for EBV. Dr. Jacob Teitelbaum's (MD) book (Fatigued to Fantastic) also touches on some studies. Some supplement information can be found on the Mayo Clinic site and WebMD.
I think there is some confusion with the term CAEBV. That is defined as a proliferative disease with EBV DNA in the blood or tissues that eventually leads to immunodeficiency and even death. I consider myself as having reactivated EBV. I have elevated IgG antibodies higher than the lab can quantify along with a positive IgM. I have had to quit working due to the debilitating fatigue. I tried to push through several times only to relapse. Some physicians have ignored my symptoms and bloodwork which has pushed me to be my own advocate. I hope this is helpful. If you or a loved one are suffering, I hope you find the information you need to be on the way to a full recovery.

chickie001 | @chickie001 | Dec 16, 2018

I have acute chronic EBV and during testing it was found that I have high IGG levels of Cytomegalovirus but IGM levels were normal. Have not been back to the doctor yet. Is this normal to go along with EBV? All I know is it is another herpes virus. So tired, depressed and confused.

Lisa Lucier, Moderator | @lisalucier | Dec 16, 2018

In reply to @chickie001 "I have acute chronic EBV and during testing it was found that I have high IGG..." + (show)

Hi, @chickie001 - I've moved your message to the discussion called "Treatment for Chronic Epstein Barr," in which you've participated previously, so you can be amongst the members talking about EBV and let them know about your current situation and question.

I'm hoping members like @mrmie @lioness @sharyld @gjul16 @anshann44 @jbri will return with some thoughts regarding the high IGG levels of cytomegalovirus but normal IGM levels found in your testing.

So, at this juncture, @chickie001, have you seen your lab results online but not yet had your doctor's interpretation of the results? What is depressing you the most at this point?

lioness | @lioness | Dec 16, 2018

In reply to @lisalucier "Hi, @chickie001 - I've moved your message to the discussion called "Treatment for Chronic Epstein Barr,"..." + (show)

@chickie001 Hi welcome Lioness here .Back when I was in my 20,s Ihad all the symptoms of IM but thought it was the flu untill I woke up one morning with a itchy rash all over so Mom called Dr .I had a high count in my lab work hetrophile I think it was ,Im 76 now so trying to remember The Dr ordered me bedrest for 3-4weeks loads of vitamins by prescription I found another website http://www.ncbi.nlm.gov/pubmed search I.M .Have you gotten your lab results from Dr.?Even if one lab is wrong with your symptoms the Dr should be able to know if its mono or not

Marianne | @mrmie | Dec 16, 2018

In reply to @chickie001 "I have acute chronic EBV and during testing it was found that I have high IGG..." + (show)

Hi @chickie001 From what I have learned, it is not uncommon to have other infections along with EBV. When the immune system is down (for whatever reason), sleeping giants can awaken. I've chatted with you before and gave some resources, so I won't go into that. I know it can be overwhelming trying to learn about this stuff while feeling so terrible. Please hang in there!

lioness | @lioness | Dec 16, 2018

@chieckie001 Im going have a talk with my Dr. I do have fibromyalgia I was doing research on Innovative Lab and they talked about the viruses that are still sleeping 😴 in us

jeff49 | @jeff49 | Dec 22, 2018

I hope this will help anyone with this terrible disease!!!

MONOLAURIN-a mild herb, has the same acid as breast milk and coconut milk. It attacks the protective shell around the virus. I began with one 500mg capsule a day for a week, then two capsules a day for another week now I'm currently taking 3 a day.

REI-SHI MUSHROOM EXTRACT-It boosts your immune system to attack the virus that has become vulnerable from the monolaurin. I've also taken some vitamin C.

15 years I've been told that all my tests are normal. The first 6 months of 2018 I spent in bed so sick that my prayer was for God to heal me or kill me. He decided to heal me. A new Doctor found the Reactive Epstein Barr nightmare and after 2 weeks of these 2 herbs I knew I was on to something. It's been 1 1/2 months since I started and I've only felt bad maybe 2 days, I hadn't felt good 2 days all year. There isn't a treatment from the FDA that I know of but this is working for me, a BIG plus is it's natural and no side effects. Apparently rest and low stress are very important. I actually heard of these in another forum and the post said basically the same thing, that it was very effective for that person.

I still have a long way to go but for the first time in 2 years I have HOPE! Good luck everyone and may God touch you as he did me.

Marianne | @mrmie | Dec 26, 2018

In reply to @jeff49 "I hope this will help anyone with this terrible disease!!! MONOLAURIN-a mild herb, has the same..." + (show)

Hi @jeff49 Thank you so much for your encouraging post! I have actually said the same prayer! I tried monolaurin (pellets - Lauricidin brand) about 2 months ago. After 2 weeks, I had a severe setback with low adrenal symptoms. I would like to restart it soon but will start with much lower dose - like only a few pellets. I'm curious and have a few questions if you don't mind. Are you on any other supplements besides the monolaurin and Reishi? Did you feel worse before feeling better? Do you also have adrenal fatigue? Thanks! I am so glad this is working for you!

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