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New Member

Date Joined Nov 2007
Total Posts : 1
   Posted 11/14/2007 11:43 PM (GMT -6)   
confused    I have just found out that I tested positive for the Epstein Barr Mono virus (active)
however I don't have any of the mono syptoms except for fatigue and it comes and goes.
I don't understand about the Epstein Barr Virus...can you have EB and not have mono.

Regular Member

Date Joined Nov 2007
Total Posts : 32
   Posted 11/19/2007 7:27 PM (GMT -6)   
I'm not sure

I had mono when I was in high school- funny now that I think about it, I feel like I still have it!

New Member

Date Joined Nov 2007
Total Posts : 2
   Posted 11/25/2007 11:35 AM (GMT -6)   
I was diagnosed with Multiple Sclerosis, Chronic Fatigue Syndrome and Fibromyalgia 12 years ago after a couple of years of a repetitive mystery illness, initially thought to be mononucleosis after testing positive for Epstein-Barr virus (EBV) and Cytomeglovirus (CMV).


Regular Member

Date Joined Oct 2007
Total Posts : 121
   Posted 11/26/2007 10:16 PM (GMT -6)   
I have tested positive for both those viruses and I really didn't have mono either. What made me sick was contracting the Human Parvo Virus. Becuase I was really sick and was being seen by a reumatologist who did her homework and by an infectious disease doctor, I think a virus can remain dormant until something pushes or it decides to activate. Sometimes if we contract other things, the virus may not have helped. Again no expert.
Chronic Fatigue
Factor V leiden mutation
Hereditary Sherocytosis
Restless Leg Syndrome

Regular Member

Date Joined Jun 2008
Total Posts : 168
   Posted 7/5/2008 1:31 PM (GMT -6)   
Hi Debart! I have fibro, cfs and cebv as well. I'm not sure if a flareup of cebv is officially labeled as mono but I do know that the re-occurring symptoms are virtually the same as of a full-blown case of it. Please see my "glutathione/atp" post in this forum or the fibro forum for more info and I sincerely hope this can help you even a little bit.

Gentlest of hugs,
John (53)
Dx'd June 2008 with Fibromyalgia & CFS  possibly caused by chronic Epstein-Barr virus (many years of ongoing symptoms.....recently worsening)......also, previously dx'd sleep apnea, high blood pressure, hypothyroid, low testosterone, high cholesterol, heart arrythmia & headaches (all types)
Several meds too numerous to list or remember!

Jackie Smith
New Member

Date Joined Sep 2008
Total Posts : 1
   Posted 9/20/2008 12:48 PM (GMT -6)   
I have been diagnosed with Epstein Barr, Chronic Fatigue and Fibromyalgia among other things. I have recently started working part time again after 6 years of not being able to work. I keep getting sick though, colds, flu things like that. I am wondering if anyone knows of any info I can find on the links between all the conditions I have and the fact that you get sicker a lot more and stay sicker longer than most people. I am also wondering if I am putting too much on my body and if this is it's way of saying 'Stop or you will get sicker!'. Any help would be appreciated.

Veteran Member

Date Joined Jul 2005
Total Posts : 2433
   Posted 9/25/2008 10:48 AM (GMT -6)   
I have read somewhere that EBV is so common that when tested for it almost all adults will test positive. You can have the virus floating around without any symptoms. I thought I had mono in college, but really I was just overworked and exhausted, and I wasn't taking care of myself. I did get a mono test, which was positive, but I really don't think it was the EBV causing anything, especially since the dr said the viral load was so low. But I went with the diagnosis anyways because it got me out of several tests and papers >:)

New Member

Date Joined Oct 2008
Total Posts : 5
   Posted 10/11/2008 11:32 AM (GMT -6)   
I was diagnosed with a high EBV back in 1991. Then I was told that all people have it but don't necessarily get sick. I had really bad colds, sore throat and chronic sinusitis the year before I came down with CFS. I've just had to learn to live with being tired most of the time and pace myself. I tried all kinds of stuff from health food stores, rested a lot, etc. but it just hasn't gone away. There used to be a support group here but people got discouraged and it broke up. A few of us call each other once in awhile which helps a lot.

Veteran Member

Date Joined Jun 2008
Total Posts : 675
   Posted 10/11/2008 1:02 PM (GMT -6)   

I had a "mystery virus" in '97.  Tested positive for both EBV and CMV.  My doctor at the time initially refused to even test for "mono" because I'd had a bad case in college (nearly 30 years prior) and said I would test positive regardless.  When she couldn't figure out my fevers, elev. liver enzymes, fatigue, rash, and joint pain, she finally consulted with an infectious disease doc who directed her to test for EBV & CMV.  This was a good month after the onset which was particularly harsh.  She told me I tested "weakly" positive for both.  In the years since,the fibro and CFS followed the unexplained virus, and now I'm looking at AI problems, spending most of my time on the lupus board. 

In the interim, I saw a homeopath, who was convinced that I had chronic EBV, and treated me as such.  The titer for early antigen was very high when I started homeopathy, and I was feeling pretty bad.  Over a few months, I felt only slightly better and, indeed the titer had come down very very slightly.  The homeopath moved, and I more or less gave up on that approach.  about a year later, after feeling much better over the course of a summer, I asked my pcp to run a titer for the EBV - just to see what it might be reading when I had been feeling well.  He didn't wish to do so, saying it really wouldn't tell us anything, but I persisted and he relented and strangely enough the result was that the titer was quite a bit higher than it had been when I first saw the homeopath! 

I did some research and couldn't find anything that really supported the EBV titers as being diagnostic or even valuable for monitoring.  At least for the chronic problem.  If anyone else has information they'd like to share on this, I'd really appreciate it.  I've never been the same since that "mystery virus" and have had two similar flares (tho much milder) in 2005 and again in July of this year.  I don't feel very well most of the time, but these bouts with sudden onset of fever, headache, eye pain, overal joint pain, and pronounced fatigue and malaise, are so specifically similar to the big one in '97 that I have to believe they are one and the same - just don't know for sure what "that" was. 

It seems most doctors just don't understand the Chronic EBV thing - and since there seems to be no treatment.....they are less interested in working specifically on that.  Sorry this is so long.  Kota and John, I will check into the glutathione/atp and Human Parvo Virus.


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing

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