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Treatment for chronic Epstein-Barr virus (EBV)

Infectious Diseases | Last Active: 3 days ago | Replies (634)
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@gjul16

I have noticed that a number of group participants use and sometimes advocate for a variety of supplements. I would like to see science-based/evidence-based treatments discussed in this EBV treatment thread. In that vein, here are two articles that might interest readers: 1) "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. [Dr. Cohen has been mentioned in this thread and is Chief, Medical Virology Section and Chief, Laboratory of Infectious Diseases, National Institutes of Health.] This article paints a stark picture of EBV treatment at the time the article was published.
2) "Chronic Active Epstein-Barr Disease" by Hiroshi Kimura and Jeffrey I. Cohen, Dec 22, 2017.

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Replies to "I have noticed that a number of group participants use and sometimes advocate for a variety..."
Colleen Young, Connect Director | @colleenyoung | Dec 8, 2018

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?

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Marianne | @mrmie | Dec 11, 2018

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.

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