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← Return to Treatment for chronic Epstein-Barr virus (EBV)
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Treatment for chronic Epstein-Barr virus (EBV)
Infectious Diseases | Last Active: Jun 24 9:40pm | Replies (615)Comment receiving replies
@tmccarthy2019 CAEBV and reactivated EBV are sometimes used interchangeably in error. CAEBV is a more severe form affecting multiple organs and can lead to death. It is usually defined with a marked elevation of EBV PCR (DNA). A reactivated form is definitely debilitating but not considered a deadly form. Reactivated EBV is not well acknowledged by conventional medicine. It usually gets ignored or you are simply told to exercise, eat well, and take an antidepressant. For more info and helpful links, check out
http://www.BackToLifeWellness.blogspot.com ...I'm curious as to how you were diagnosed.
Replies to "@tmccarthy2019 CAEBV and reactivated EBV are sometimes used interchangeably in error. CAEBV is a more severe..."
There seem to be many questions and responses in this Discussion about the definition of CAEBV. Let me suggest an excellent 2017 general article about EBV by Jeffrey I. Cohen MD (NIH) and Hiroshi Kimura MD PhD: "Chronic Active Epstein–Barr Virus Disease,"
https://www.frontiersin.org/articles/10.3389/fimmu.2017.01867/fullRead the first five or so paragraphs in the section titled "CAEBV Definition and Features. It also tells you which definitive EBV lab test to have performed and which EBV lab tests not to have performed.
Further down in the article, you also might want to read the section titled "CAEBV in the United States."
Even further down in the article, you also might want to read the section titled "Treatment and Prognosis." As has been stated in other research articles, "patients succumb to their disease if they do not undergo hematopoietic stem cell transplantation."
Hi ! I am brand new and just diagnosed with CAEBV. I am a 62 year old woman and I have been sick with fatigue , fever, malaise and now enlarged spleen and shoulder pain. My blood results are 750 . I feel just awful.
I have joined because I need to have all of your support and your knowledge. I have no idea what to do. Help
Thank you,
Sue
I’ve been battling health issues for years, but I went to the dr with increased fatigue, heart palpitations, I’ve collapsed a few times. She said it’s incredibly rare but I’ll test you for caebv. Loads of labs and here I landed. The labs came back with a huge “caebv” across the top. Thanks for the link, I’ll check it out
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It is diagnosed with a BLOOD test. I have Chronic Active EBV and the other CMV (herpes blood virus) that goes along with it (score 189) and my score is 209 for EBV. it is affecting my kidneys, liver, immune system and the vagus nerve in my ear and I have constant ringing in my left ear. It is also affecting my thyroid, and Naturopaths do recognize it. EBV is part of the herpes complex family and it is dangerous past a certain point and is either the result of or part of AutoImmune Disease (mainly Hashimoto's Thyroiditis & Graves).I have HM's and can not take meds for it because of the CAEBV. My doctor is going to prescribe me some Low Dose Naltrexone to try and manage it.