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Is chronic reactivated EBV different from chronic active EBV?
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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What antiviral did your doctor put you on? How long have you been on it? Is it your family doc that prescribes it or a specialist? And most importantly, is it helping? My doctors have never suggested antivirals most likely due to lack of knowledge.
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1 ReactionJust got my EBV test back.
EBV IgM - Negative wow... this site just chopped off a big chunk. Not typing that again!
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?
@darkmatter53 I personally have yet to come across a doc who truly understands it. I have seen my primary doc, infectious disease, integrative medicine, endocrinologist, and a GI doc. However last week I came across Dr William Rawls. He is an MD who became ill during his forties. He was dx with fibromyalgia, Lyme, and reactivated EBV. His doctor colleages were unable to provide answers. So he spent several years researching and ended up healing himself with lifestyle changes and herbs. I think he is a doctor who actually gets it. I feel he is legit too. I watched his webinar called "EBV Virus and Chronic Fatigue Connection." I don't have the link handy but you can google him or go to his we site RawlsMD.com.
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3 ReactionsHad 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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2 ReactionsQuick 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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1 Reaction@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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1 ReactionLove 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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1 ReactionHi @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.
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.