Treatment for chronic epstein barr

Posted by cummings3 @cummings3, Jan 23, 2017

My son has been suffering with this 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.

@colleenyoung

Hi @seehawkeye, I noticed that you wished to post a URL to web resources with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam, so allow me to post it here.
– CD8+ T-Cell Deficiency, Epstein-Barr Virus Infection, Vitamin D Deficiency, and Steps to Autoimmunity: A Unifying Hypothesis https://www.hindawi.com/journals/ad/2012/189096/

Seehawkeye, what about this research interested you in particular?

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Apologies for not writing back earlier. I have been testing positive for chronic Epstein Barr since my first test in 2013. In an effort to understand what this means, I embarked on a research project because none of the medical professionals I knew could explain it. Turns out that I also have a low CD8 cell count and percentage as well as a very high CD4/ CD8 ratio and I am deficient in Vitamin D. So, this article was helpful in beginning to explain what is going on. My next step is to reach out to Baylor to see if they will take me on as a patient to understand what is likely the genetics behind my low CD8 count which is causing me not to be able to clear the EBV. They have some treatment options including supplying patients with CD8 cells marked for EBV. I believe they are also using this technology for COVID 19 because the adaptive immune system is critical for clearing the virus. Patients with T cell deficiencies (especially CD8) are at high risk for a poor outcome. Interestingly, some patients who have had COVID have reactivated EBV. EBV is problematic as you know because it can cause certain types of cancers and their is research that shows it can lead to autoimmune conditions.

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I wanted to mentioned one other research effort being done by the University of Utah. In 2016, U of U researchers determined that Spiralactone inhibits the production of EBV. A follow-up paper was released last year explaining how this works. Here are the links to the two studies. https://www.pnas.org/content/113/13/3609 and https://www.pnas.org/content/117/23/13044

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@seehawkeye

I wanted to mentioned one other research effort being done by the University of Utah. In 2016, U of U researchers determined that Spiralactone inhibits the production of EBV. A follow-up paper was released last year explaining how this works. Here are the links to the two studies. https://www.pnas.org/content/113/13/3609 and https://www.pnas.org/content/117/23/13044

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Interesting, @seehawkeye! Thx for sharing

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@nataliem

I'm so sorry to hear this. They will probably deny me, too, then. Yes, please let us know what they have to say at John's Hopkins. Thank you!

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My husband had a Tele-conference with about 6 different physicians and some medical students.
They are looking into it. So far, no definitive answers……

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@sswonger

My husband had a Tele-conference with about 6 different physicians and some medical students.
They are looking into it. So far, no definitive answers……

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It’s difficult when you have health issues and don’t fit in an easily defined box. You are doing the right thing, Keep working on it. Don’t lose hope. You will find answers.

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@seehawkeye

I wanted to mentioned one other research effort being done by the University of Utah. In 2016, U of U researchers determined that Spiralactone inhibits the production of EBV. A follow-up paper was released last year explaining how this works. Here are the links to the two studies. https://www.pnas.org/content/113/13/3609 and https://www.pnas.org/content/117/23/13044

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It would be fantastic if they find a treatment for this. In the meantime with lingering fatigue, tingling and burning, months after finally testing negative for mono, rest and eating whole healthy foods seems the only answer. Monitoring stress levels is huge too. I’ve noticed any stressful incident triggers symptoms. I wonder if anyone else with chronic reactivated EBV can relate to that?

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I have been testing consistently positive for chronic EBV since 2013. I can’t tell that I have it though. I don’t have any mono symptoms. But, I do have health issues and I am concerned that EBV can cause certain cancers and autoimmune conditions. So, it’s important to address it. You need to know why you are testing positive for chronic EBV. For me, it’s low CD8+ T Cells (mine run around 9-10% where normal is around 30%). As a result, I can’t clear the virus. Have you had any CD4/CD8 testing? I would ask for that test. Baylor has a program where they can give you CD8 cells marked for EBV, which could help people like me to overcome it. Its still in the testing phase and I don’t yet know under what circumstances it is appropriate treatment. I’m going to look into this and will let all of you know. I know there is another treatment but it’s very risky and only used in very severe cases. I also mentioned that U of Utah has determined that a common drug called spironolactone inhibits viral replication of EBV. That could be an option. I know of no other solution. There is a lot of bad advice out there regarding how to deal with this, some of which was mentioned in these threads (I.e., something about starving the virus). I would focus on what the researchers are doing.

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