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?

Interested in more discussions like this? Go to the Infectious Diseases group.

@lisalucier

Hello, @mikla, and welcome to Mayo Clinic Connect. Sorry to hear some of your post was lost. It would be great to hear a bit more of your story, if you'd like.

How are you feeling about the results of your Epstein Barr Virus (EBV) test?

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Had some site problems where the “less than” sign caused some issues… anyway…

Just got my test back:

IgM – Negative (less than 36)
EA IgG – Positive (28.7)
VCA IgG – Positive (308)
EBNA IgG – Positive (169)

The lab actually called me (on a Saturday) as an “alert” popped up on their system indicating it they needed to alert me immediately and recommended I see a doctor ASAP. They offered to call them directly and fax a copy of the results. The numbers are a little worse than a year ago. Not a single doctor would agree I had a reactivation, including my hematologist so I ordered the test myself on the Internet.

I have the typical symptoms including fatigue/tiredness, swollen lymph nodes, feverish, joint pain and headaches. Been having these for over a year now.

Got a call into my PCP and will follow up tomorrow. I also sent Dr Cohen an email at the NIH asking for advice and steps I might take.

Guess we we will see what happens. Just another thing to add to the list of my chronic cervical pain and constant PVCs. I’ve already had, and fought off, prostate cancer. But I refuse to feel bad as long as I wake up every morning.

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@lisalucier

Hello, @mikla, and welcome to Mayo Clinic Connect. Sorry to hear some of your post was lost. It would be great to hear a bit more of your story, if you'd like.

How are you feeling about the results of your Epstein Barr Virus (EBV) test?

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Quick follow-up to my own post.

Dr. Cohen from NIH emailed back at 11pm last night. He states that we should be getting EBV DNA PCR test on whole blood to determine if it is CAEBV. I believe this is LabCorp test 139490.

He also said that if CAEBV is confirmed through this test he would be happy to provide advice to my doctor or even see me to NIH in Bethesda, MD for evaluation.
https://www.niaid.nih.gov/research/jeffrey-i-cohen-md-laboratory-infectious-diseases

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@mikla Please keep us posted! All of my EBV antibodies and EA were elevated to the max. My IgM was also positive. ID doctor ran a PCR which was negative so he said I did not have reactivated EBV despite my horrible symptoms. I am interested to hear how yours turns out and what Dr Cohen thinks. I wish you the best in your recovery!

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Love my traditional doctors – but for everything other than EBV reactivation. Ten years ago a teaching ND diagnosed me on the first appointment, based
on ANA testing from previous years. I did NOT have Lupus. Everyone had been misreading my ANAs. He ran a test that traditional medicine does not
know how or refuses to run. Instead of being around 33 where I should have been on a standard "have I ever had had mono" test, I was at 3,533!
I didn't even know I'd ever had mono. I was given a protocol of Astra-Isatis, monolauren (a derivative of coconut) and lysine. Ten days later I was dancing
on the moon. I had my life back. Ten years later, at 76, not a single doc that I see in traditional medicine has acknowledged the EBV or the protocol
for it.

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Hi @magbatt I am so happy for you but sad for the doctors. If they could just let go of their egos, listen, and learn from those who have recovered they could help so many others. Thanks for sharing how you recovered. That is helpful information.

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@mrmie

@mikla Please keep us posted! All of my EBV antibodies and EA were elevated to the max. My IgM was also positive. ID doctor ran a PCR which was negative so he said I did not have reactivated EBV despite my horrible symptoms. I am interested to hear how yours turns out and what Dr Cohen thinks. I wish you the best in your recovery!

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My PCP visit went great. She was well researched on EBV, CAEBV and the DNA PCR test. She walked through the various antibodies and explained how they might be elevated. She took blood and ordered the DNA test. We’ll see what comes back and take it from there. But I do feel REAL lucky to have a primary doctor that understands this issue so well.

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@mikla

My PCP visit went great. She was well researched on EBV, CAEBV and the DNA PCR test. She walked through the various antibodies and explained how they might be elevated. She took blood and ordered the DNA test. We’ll see what comes back and take it from there. But I do feel REAL lucky to have a primary doctor that understands this issue so well.

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@mikla That is great news! Sounds like she is knowledgeable and supportive. That is a rare find.

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@mikla

My PCP visit went great. She was well researched on EBV, CAEBV and the DNA PCR test. She walked through the various antibodies and explained how they might be elevated. She took blood and ordered the DNA test. We’ll see what comes back and take it from there. But I do feel REAL lucky to have a primary doctor that understands this issue so well.

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Hi, Where is your doctor located? What is her specialty? Is she seeing new clients? Thanks and good luck Frank

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Hi Frank, Unfortunately, the wonderful ND that found the misdiagnosis of Lupus, CFS so fast has retired. He was a staff person at Bastyr Naturepathic
University's Seattle clinic. He's the one who first ordered the labs that confirmed the EBV reactivation. Another ND there several years later ran them also, but she is now with Doctors Without Border's in South America. When I ask my traditional docs to run the tests, they just run the same old ones that they run that don't pick up anything. I am pretty much on my own now, but knowing what works, I just keep using it.
Lysine is available everywhere and is inexpensive.
Monolaurin is harder to find, but Amazon does have it, and another ND has ordered it from her sources for me. Same for the Astra-Isatis. The monolaurin and Astra-Isatis are expensive, ($50-$60 each) but for me it's the difference between having a life and not having one. The Bastyr teaching clinic here can be wonderful, or can be frustrating. I'm in my 70s, so it only costs me $20 a visit. I was lucky. For years I had great student teams and docs. Now
I see a private ND for other reasons and she is much more expensive, but good. Where are you located? I do so hope you will be as fortunate as I was
in feeling wonderful again!

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For 20 years I've thought I had arthritis only to find out recently that my RF and X-rays are normal. I have fatigue, joint pain all over, brain fog, etc. I asked my doctor to test for Lyme and EBV, bc all of this started a few years after I had Mono. My EBV came back very high and the labs show positive for reactivated EBV. My doctor is clueless and I am frustrated. I am super excited by @magbatt suggestion of natural medicine. I plan to start that pretty soon. I'm glad to hear that I am not alone. If anyone finds a doctor in GA I would love to hear about it.

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I just joined this group. I am 56 years old and suffered acute mononucleosis when I was 21 and in college. A perfect storm of stressful events triggered reactivation in 2014. I was diagnosed 3 1/2 years ago with Reactivated EBV. I never thought it would hang on so long. Mine affects muscle and energy recovery time, as well as flu-like symptoms ( body aches and chills, swollen lymph nodes) after periods of stress or overdoing it. Overdoing it could be as simple as attending a birthday party and doing 1 hour of light housework. It's as if my body punishes me by saying "how dare you try to live your life!". I understand that it affects us all a little differently. I was able to get SSDI after 3 years of appeals, which the stress made me even sicker. This is a very misunderstood illness with lots of ramifications. Last night I started crying again from frustration over having another "flul-ike episode. Which have been appearing almost daily while I amin the middle of a divorce and selling the house. I have had to research most of what I know because the medical community isn't well versed in this.

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Wow, no one has ever mentioned to me about an infectious disease doctor. I hope this doctor can help.

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