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?

@mikla

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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I don't know what all the numbers mean but here are mine….EBV VIRAL CAPSID AG (VCA)
AB (IGM) 46.70………EBV VIRAL CAPSID AG (VCA)
AB (IGG) 298.00…..EBV NUCLEAR AG (EBNA)
AB (IGG) 51.60………..Maybe someone can help

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@jgee18

I have been so depressed and upset seeing myself this ill, that I have been crying not understanding what was wrong with me…on July first I woke up with my pelvic, groin, and belly swollen and after the entire lymphatic path all over my body started to swell…we thought it was an allergic reaction…we tried anti allergic meds, diet, antihistamine meds, antibiotics, an aggressive plan of steroids with anti allergics, blood tests, allergies testing, all came back “normal” but the swollen persisted (until this day ,this minute) the pain everywhere, my armpits are swollen and in pain, my breast I can’t even touch it! , my neck, my face, my hands, my feet….and we didn’t get any answers…I thought I got cancer or something terminal! But not positive tests….until they did the EBV test and my antibodies came back super high! I am concerned though cz I haven’t come across anyone with so many days of inflammation…I see cases in pain, with lack of energy…but swollen like me for two months?….I am so depleted, so drained, so many questions…and I feel so ill…I am 36 y/o and I usually wake up and go straight to the gym, I am normally active and full of energy…and seeing myself in a bed for two months and barely starting gathering answers by myself bcz the doctors that I have visited about this they don’t know what I have and they haven’t been sympathetic…so I am trying to survive this by myself…with so many questions and so sick…thank you for your advice I have to do something myself so I will start that plan that you mentioned and see if there is some hope for me…

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Everybody has different symptoms so try not to worry too much . I’m on month 7 and the last 2 months since I stopped working out are by far the worst. I so feel your pain as I live alone and no family around . Trying to rest and get better but I’m so fed up too. Let us know if you’re doing any better as this post is from September .

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@ethanmcconkey

Hi @lori93950 welcome to Connect! Your increasing symptoms must be frustrating.

@mrmie and @jgee18 have experience with EBV and may be able to offer support.

As for you @lori93950, have you been given a meds protocol yet?

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I’m taking Valtrex and loads of immune boosting supplements … drinking celery juice eating healthy …. that’s the best I can do right now

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@luannkelly

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

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There’s no help …. I’ve been to one . It has to just go in its own time … there is no cure apart from rest eating healthy that’s all we can do

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@chickie001

I don't know what all the numbers mean but here are mine….EBV VIRAL CAPSID AG (VCA)
AB (IGM) 46.70………EBV VIRAL CAPSID AG (VCA)
AB (IGG) 298.00…..EBV NUCLEAR AG (EBNA)
AB (IGG) 51.60………..Maybe someone can help

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@chickie001 Hi. You would need to post the reference ranges that are on your lab report. Different labs do these titres differently and have different reference ranges. So a result from one lab may mean something totally different than that same result from another lab

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@mrmie

@chickie001 Hi. You would need to post the reference ranges that are on your lab report. Different labs do these titres differently and have different reference ranges. So a result from one lab may mean something totally different than that same result from another lab

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EBV VIRAL CAPSID AG (VCA)
AB (IGM) 46.70 H U/mL
U/mL Interpretation
—- ————–
43.99 Positive

EBV VIRAL CAPSID AG (VCA)
AB (IGG) 298.00 H U/mL
U/mL Interpretation
—- ————–
21.99 Positive

EBV NUCLEAR AG (EBNA)
AB (IGG) 51.60 H U/mL
U/mL Interpretation
—- ————–
21.99 Positive

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Sorry. For some reason the ranges didn't post.

EBV VIRAL CAPSID AG (VCA)
AB (IGM) 46.70 H U/mL
U/mL Interpretation
—- ————–
43.99 Positive
EBV VIRAL CAPSID AG (VCA)
AB (IGG) 298.00 H U/mL
U/mL Interpretation
—- ————–
21.99 Positive
EBV NUCLEAR AG (EBNA)
AB (IGG) 51.60 H U/mL
U/mL Interpretation
—- ————–
21.99 Positive

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@magbatt

Hi jgee 18,
Wow, getting the stuff today. Perhaps I shouldn't say so because it may raise expectations unrealistically, but I'm excited for you.
I'm not a doctor – I can only speak from personal experience. I'm sensitive to many things, so usually start anything new slowly. In this case, I did not. I started with the full deal right from the get-go and didn't have an issue. The Astra Isatis is an herbal formula (didn't know that until recently) and there could be an allergy issue there, but I had no side effects. I only remember that after ten days I
realized I was feeling so much like my old self. It's probably unrealistic for you or others to expect such a dramatic turn around,
so I would say don't give up if it doesn't happen as dramatically as mine did. There could be other factors involved also. Without a lot
of vitamin D3 I tend to have SAD, so I always have to think about how that may be affecting how I feel. (although, that has also been
much less a factor since I've been on the EBV protocol.)
I'm just so hopeful for you. Keep me/us posted. Magbatt

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Hi Magbatt-I've been diagnosed with re activated EBV and am planning to start the supplements you mentioned. How many times daily have you been taking them?
Thanks!
Sharyld

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@chickie001

EBV VIRAL CAPSID AG (VCA)
AB (IGM) 46.70 H U/mL
U/mL Interpretation
—- ————–
43.99 Positive

EBV VIRAL CAPSID AG (VCA)
AB (IGG) 298.00 H U/mL
U/mL Interpretation
—- ————–
21.99 Positive

EBV NUCLEAR AG (EBNA)
AB (IGG) 51.60 H U/mL
U/mL Interpretation
—- ————–
21.99 Positive

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@chickie001 Thanks for posting the reference ranges. It looks like they are all elevated so likely an active infection with EBV. The IgM antibodies are positive when there is an active infection but not always. IgG will usually remain elevated for life even in healthy individuals. I'm glad your doctor actually recognized that the EBV is active. Mine told me to exercise despite having extremely elevated titers across the board and debilitating symptoms. She's no longer my doctor, of course! Again, http://www.ebvhelp.com is a good resource, along with http://www.rawlsmd.com. Listen to your body. THIS IS NOT AN ILLNESS THAT IMPROVES BY PUSHING YOURSELF! I've learned that the hard way. ….God bless

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@mrmie

@chickie001 Thanks for posting the reference ranges. It looks like they are all elevated so likely an active infection with EBV. The IgM antibodies are positive when there is an active infection but not always. IgG will usually remain elevated for life even in healthy individuals. I'm glad your doctor actually recognized that the EBV is active. Mine told me to exercise despite having extremely elevated titers across the board and debilitating symptoms. She's no longer my doctor, of course! Again, http://www.ebvhelp.com is a good resource, along with http://www.rawlsmd.com. Listen to your body. THIS IS NOT AN ILLNESS THAT IMPROVES BY PUSHING YOURSELF! I've learned that the hard way. ….God bless

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Thank you for the information. I will definitely check out the websites. Actually I asked my PC to do the bloodwork then he would not refer me to anyone. I was still sick 2 weeks later and he was booked up so fortunately for me I got to see his PA. She was great!! Explained the lab results and said….I don't care if he won't refer you but I am….you are sick and we need to know why it keeps reactivating. Will keep you updated.

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I am 20 years old, I got mono for the first time in 6th grade. It reactivated in high school and my doctor says I got meningitis from it. I've now had mono 12 times and I have yet to find a doctor who knows anything more than to rest and drink water. I have had so many complications- unexplained weight changes, HUGE spleen swelling, septic tonsils, neck and back pains. I need some answers or suggestions at the very least. What have others found that helps? Has anyone found a doctor who takes this seriously?

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@yomynameischlo

I am 20 years old, I got mono for the first time in 6th grade. It reactivated in high school and my doctor says I got meningitis from it. I've now had mono 12 times and I have yet to find a doctor who knows anything more than to rest and drink water. I have had so many complications- unexplained weight changes, HUGE spleen swelling, septic tonsils, neck and back pains. I need some answers or suggestions at the very least. What have others found that helps? Has anyone found a doctor who takes this seriously?

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Hello @yomynameischlo, welcome to Connect. Getting diagnosed with mono 12 times in what sounds like an 8-year span must be a lot to deal with. While we wait for the other members of this discussion to share their experiences with you, would you be comfortable sharing a bit more with the group? Do your providers think all of these complications are connected? How have you tried to manage the symptoms?

This discussion may also be worth taking a look at and participating in as well, https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/.

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@yomynameischlo

I am 20 years old, I got mono for the first time in 6th grade. It reactivated in high school and my doctor says I got meningitis from it. I've now had mono 12 times and I have yet to find a doctor who knows anything more than to rest and drink water. I have had so many complications- unexplained weight changes, HUGE spleen swelling, septic tonsils, neck and back pains. I need some answers or suggestions at the very least. What have others found that helps? Has anyone found a doctor who takes this seriously?

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HI @yomynameischlo. I too am dealing with recurrent EBV infections. It sounds like you have had a time with it having all those other issues. They sound serious, so I hope you have a doctor who can monitor those things. What has helped for me is diet change (cutting dairy, gluten, eggs at first, to name a few), supplements, lifestyle change, lots of rest, and not pushing myself. I'm also taking L-lysine and just started Lauriciden (monolauren). I have not found a conventional doctor who takes this seriously despite all my EBV antibodies (even active antibodies) out the roof and having debilitating symptoms. I had to leave my job and am soley focused on healing now. There are some doctors that can be found online who have a wealth of info on these sorts of illnesses. I currently am following Bill Rawls, MD Restore Kit Vital Plan. Other ones worth looking into are Evan Hirsch, MD (Fix Your Fatigue – book and website), Rodger Murphree, DC (yourfibrodoctor.com). They offer non conventional treatment. The only treatment from conventional doctors that seems to help some is antiviral medication (Valtrex, Zovirax). I'm taking Valtrex too along with my other stuff. I can't diagnose or treat, so these are only suggestions. I'm sorry you are going through this at such a young age. I was 21 when I had my first bout of recurrent EBV that lasted most of my twenties. However, now there is the internet so it is much easier to come across information. Even joining an EBV Facebook group can be helpful just to find out what is helping others. I learned a lot from doing that. But of course you have to sift through the info and do your own research as well. I'm sure there are others on here who have more to add. Hang in there! Please let us know how you do.

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@mikla

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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—How does one make an appointment for a EBV workup with Dr. Cohen?
—Does Dr. Cohen have criteria for accepting a patient to evaluate?
—I have had 4 tests that were performed under the test name "EBV Acute Infection Antibodies" plus some other tests with skewed values.
—Does NIH have an appointment protocol to follow?
—I found online what I presume to be Dr. Cohen's nih email.
—Have you found any other doctors in the Washington area who are very knowledgeable about EBV?
Thanks.

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Hello everyone. I am taking a step of faith by posting on this feed. I hope that it is still active and that someone can help me to understand what is happening or possibly help point me in a direction that makes sense.

I went to the doctor in August of this year because I had been so fatigued that I often thought I was going to faint. I have never ever in my life felt so tired. At times, breathing felt like it too all of my energy… as crazy as that sounds. My doctor ordered a bunch of tests and one of them was for EBV. The results came back confusing to me…
My doc told me that I had a recent infection of EBV, but he assured me that I didn’t have mono nor was I contagious.
Based on what I’m seeing… it looks like both antibodies are elevated. Which looks like both a past and a recent infection. Regardless, it has been 5 months and I still feel terrible.

Here are my lab results:

EBNA >600.00 positive
EBV VCA IgG >750 positive
EBV VCA IgM 58.8 positive

In all the threads and forums I’ve seen… I haven’t seen anyone have all three of these test positive. What does that mean? Is this a reactivated EBV or a new infection? Thanks!

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