1. < Infectious Diseases

Is chronic reactivated EBV different from chronic active EBV?

Posted by memecat28 @memecat28, Feb 7, 2018

I was just told I tested positive for all Epstein Barr Virus tests, except for the one that says you were recently infected. I was told I have Chronic Reactivated Epstein Barr Virus, and that I would be referred to an infectious disease doc. I started to research and everything keeps coming up with Chronic Active Epstein Barr, which seems to be a rare form and serious. Are these two forms different?

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suziejane555 | @suziejane555 | Oct 9, 2024
In reply to @fatigue001 "(Chronic reactivated Epstein Barr virus) is different than (chronic active Epstein Barr virus)? Correct?? Two different..." + (show)
@fatigue001

(Chronic reactivated Epstein Barr virus) is different than (chronic active Epstein Barr virus)? Correct?? Two different illnesses? CAEBV is a death sentence and very rare in the U.S. but drs are calling it that and shouldn’t be ???

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Hi, so I have researched this as I have what I call CAEBV. If you have CAEBV in T or NK cells that's when it's fatal. Usually it's in the B cells, sometimes T in Western Countries. It still can cause different cancers even in B cell. I read if the EBV is active for longer than 3 or 4 month with high viral loads and it keeps reactivating then its CAEBV. Also they look at other markers like HPA axis disregulation, which means you have Chronic Fatigue Syndrome and may have several other symptoms connected to EBV

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jaxkat | @jaxkat | Jan 21 8:25pm
In reply to @suziejane555 "Hi, it sounds like you have CFS, Chronic Fatigue Syndrome.Its actually a debilitating disease. It's beyond..." + (show)
@suziejane555

Hi, it sounds like you have CFS, Chronic Fatigue Syndrome.Its actually a debilitating disease. It's beyond tired or fatigue. Its comes from having reactivated EBV. I have it along with many other inflammation symptoms, I also have pain in joints that last for months, but nothing shows up on x-rays. I finally was diagnosed with neuropathy, dry eyes, carpel tunnel and more. Each "flare up" or new EBV reactivation I get worse, and the EBV stays active for over 6 months. I find myself chasing symptoms because DR's don't understand how serious CAEBV or reactive EBV is. I have realized when the EBV starts, so do all the same issues, The EBV creates inflammation, but that doesn't show up on scans so they say your fine. Im not fine, like you said this was not me prior. I have now realized I will never feel the way I used to. My quality of life is not good!

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Advice from my Homeopathic Dr. to drink celery juice, every day, helped tremendously with the inflammation. I lost 5 lbs of water, in one week!

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anonymous620 | @anonymous620 | 6 days ago

My doctor said one is not infectious to others if the tests do not show a recent EBV infection. Also many who contracted COVID-19 show periodic EBV recurrence on lab tests, even if they have had COVID-19 a while a go. He tests regularly for EBV and tracks the test patterns fluctuation vs. how I feel and other vital signs to get at least some measurement on what is going on with fatigue levels, swollen lymph nodes under the arm, etc. I'm normally high energy, happy, and peppy, so this is definitely viral related. Doctor said no one knows why the one virus reactivated the other, nor what the cure is. It does appears cyclical, comes and goes like long COVD symptoms. What helps: Lots of exercise, don't fight sleep if you need to take a nap -- take a nap. Oddly, drinking sugar free tonic water helps, for some unknown reason, maybe the quinine? Lastly, Doc advises all his patients not to drink alcohol at all, it is not good for the liver and the negative effects are cumulative and worsen with age. (He said the French myth about a glass of wine a day being "good" for you "is a myth.")

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kevinann | @kevinann | 4 days ago

I have been formally diagnosed with Chronic Active Ebstein Barr, as well as Long COVID ~ the Ebstein Barr cause my liver and spleen to swell and caused damage to my gallbladder, which ended up having to be removed, found to be full of nodules .
My blood work is awful looking but the ID (partially retired) claims it's all just part of EBV. I am concerned about my blood work (CD 4 CD 8 ratio being very high) but feel like I have no one to answer my questions:(

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Forlorn Theressa | @theressa | 2 days ago

This is NOT medical advice, as I am not a medical provider.

However, I have persistent sarscov2 infection. This virus activates dormant viruses- like epstein barr and shingles.
Your symptoms do sound like many of the same symptoms that the millions of people who have “long covid”, or post covid sequela syndrome (pcss).
Most physicians do not know anything about pcss, as it is only a 5 year old disease.
You could ask your doctor about pcss.
Good luck.

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