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?

Liked by Marianne, bandolsmom

@michellebelle

darkmatter53, I too live in Florida and am always trying to find medical doctors who understand and treat EBV. I am currently seeing a Natural Medicine doctor who is treating me for EBV. I under went ultra violet treatments which works for a while and then I fell right back to my old ill self. Now I'm being treated with amino acid peptide shots. So far I don't feel any difference. Reply and let me know where you live. I did find a practice in Tampa that I was willing to travel to for treatments. I live in The Villages between Ocala and Leesburg.

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Frank, thanks for the reply. I have been tested for other viruses but EBV is the only one reported. I watch my diet closely and I take numerous supplements. I keep switching up the supplements and don't find any of them to help significantly but I keep trying. I have had nutrition panels done and then purchase what ever supplements the nutritionist tells me I lack. I've added zinc and a few others as well when I heard of their healing powers. I don't feel any different with any of these but maybe I would feel worse if I wasn't taking them.

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@michellebelle

darkmatter53, I too live in Florida and am always trying to find medical doctors who understand and treat EBV. I am currently seeing a Natural Medicine doctor who is treating me for EBV. I under went ultra violet treatments which works for a while and then I fell right back to my old ill self. Now I'm being treated with amino acid peptide shots. So far I don't feel any difference. Reply and let me know where you live. I did find a practice in Tampa that I was willing to travel to for treatments. I live in The Villages between Ocala and Leesburg.

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Michelle, Yes it is frustrating. You might want to research the use on herpes antivirals for Epstein since they are all in the same family. I am going to try convincing my doctor. Good luck and let's keep in touch. regards, Frank

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@darkmatter53

I tested positive for EBV in 2016 despite the fact I had mono while a teenager. Quite frankly, most doctors do not understand this disease or shrug it off with the belief that mono only comes once. If any out there truly know of a good doctor that understands EBV can become reactivated. please let us know. I live in florida

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I’m a 40 year active male that had mono/ebv in college for about 10 months. Been relatively health (workout five days a week) work full time father of two) but have had four EBV reactivations since I was twenty. Currently on a month and a a half of extreme fatigue and malaise. I switched jobs so it was triggered by stress. This isn’t mental people it’s basically herpes 4 and the key is to push it back into hibernation not kill it. Super frustrating

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@darkmatter53

I tested positive for EBV in 2016 despite the fact I had mono while a teenager. Quite frankly, most doctors do not understand this disease or shrug it off with the belief that mono only comes once. If any out there truly know of a good doctor that understands EBV can become reactivated. please let us know. I live in florida

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Thanks for your response. Yes, I agree. It is bad enough to have to fight this thing and the doctors, too.

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@acapulcoheart

I was diagnosed in May 17 with EBV Mono. Dr. said maybe 6 months and i am still experiencing fatigue. I am 56 yrs old . It has changed me completely, im always tired so i try to plan very little anymore. My body is in constant pain anymore and I think it is due to Mono. Every muscle aches on me besides the arthiritis in hands feet etc. I prefer to sit still and not move , this was not me prior.
Who should i see , does this sound the same for someone else?

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I have Hashimoto's, which is an autoimmune disorder that attacks the thyroid. I recently started seeing a naturepathic doctor who ordered a battery of tests. It turns out I have reactive EBV. There's a connection between EBV and autoimmune disorders like rheumatoid arthritis, Hashimoto's, and about 100 others. I also have chronically low vitamin D which is known to play a part in both reactive EBV and autoimmune issues.

My Dr has me on antiviral medication, an assortment of supplements that will not only help the antiviral medication but also help calm and relax my body to ease stress (a big trigger), a specific workout plan, and my diet has been overhauled. He has cut out all gluten, grains, dairy and sugar. His belief is that since the immune system is in the gut and I have autoimmune issues than I most likely suffer from something called leaky gut which some doctors believe triggers EBV. So far so good but the antiviral medication is very expensive even with my insurance ($200 a month).

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@acapulcoheart

I was diagnosed in May 17 with EBV Mono. Dr. said maybe 6 months and i am still experiencing fatigue. I am 56 yrs old . It has changed me completely, im always tired so i try to plan very little anymore. My body is in constant pain anymore and I think it is due to Mono. Every muscle aches on me besides the arthiritis in hands feet etc. I prefer to sit still and not move , this was not me prior.
Who should i see , does this sound the same for someone else?

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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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Just got my EBV test back.
EBV IgM – Negative wow… this site just chopped off a big chunk. Not typing that again!

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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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@darkmatter53

I tested positive for EBV in 2016 despite the fact I had mono while a teenager. Quite frankly, most doctors do not understand this disease or shrug it off with the belief that mono only comes once. If any out there truly know of a good doctor that understands EBV can become reactivated. please let us know. I live in florida

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@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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@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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