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Epstein Barr Virus (EBV) Message Board
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Old 03-01-2008, 01:18 PM   #16
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ebv levels very high, sick for over a month - jojo?

Hi,

I posted about my ebv story on a few boards, but while searching past threads noticed that Jojo and some others have it, and posted about it...so I am coming here.

I have been so sick for over a month now. very flu-like, chills, brain fog, dizzy, problems with my heart rate, headaches, so many things.

I was going in for more bloodwork last week, to see if anything could be found...and I just so happened to have a sore throat that day (caught something from my kids)...now, I hadn't had a sore throat at all until then, just all the other things I wrote about. My nurse practitioner decided to test me for mono/ebv.

I had mono once when I was 14, didn't think it would come up again since my symptoms were different, and I thought I just caught the throat thing from the kids.

Low and behold, the ebv blood tests came very very high. One level was 2700, another was 800+.

I feel so terrible right now! Like a never ending flu. Sore throat went away in two days though.

I am feeling soooo sick, I went from super mom who was never sick, to sick crabby mom stuck on the couch.

I guess I am just worried. Could the number show up that high from the previous mono 18 years ago?? or is it in fact currently active?

My np told me it was active. But she is worried that I am not getting better. So she is referring me to an infectious disease doctor.

I am worried that I have something much worse and the results just happened to come back positive for it cause of past infection.

Does it sound like a bout of ebv to you? How long does it usually take to feel better?

I have seen that Jojo and some others are on valtrex for it, how long did you have it before the doc gave that to you? Is it still working?

I can't go on feeling this way forever. It's so bad!

Thank you so much in advance for your time. I really appreciate it. I am so scared! If I just knew that it was just the ebv and I will get better...maybe I can accept it better. I can't help worrying I have cancer or something!!!

Last edited by wednesday76; 03-01-2008 at 01:19 PM.

 
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Old 03-01-2008, 01:26 PM   #17
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Re: ebv levels very high, sick for over a month - jojo?

just wanted to add...right now I have the chills like all the time and my brain is constantly foggy. Awful headaches very often!

oh and zero appetite, I get hungry sometimes but really have to make myself eat...no interest in food.

but it's like this thing has taken over my whole system!

I always feel fatigued, yet sometimes I have this wired feeling inside, adrenailine like...and have gotten anxiety from it all too, but it feels physical, not mental, kwim?

Now I probably sound crazy lol. I promise you I was normal before this all started!

Do these things sound typical of ebv to you? Can it really wreak havoc on your whole system?

Thanks so much again.

Last edited by wednesday76; 03-04-2008 at 01:22 PM.

 
Old 03-01-2008, 05:10 PM   #18
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Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?

We should be well past the three head stage ... but I can't say much on availability ... they were giving it to WHO first to use it where it could have the most impact (and perhaps to work the bugs out where it was safer to do so ... if it gives a wrong answer, lawsuits don't come out of mud & straw huts).

The antiviral was to go after all three of the four horsemen of the fibromyalgia apocalypse.

 
Old 03-04-2008, 11:44 AM   #19
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Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?

Hi, wednesday,
Sorry it took a few days to reply.
I actually don't know what my numbers were. I had gone to the doctor because my lymph nodes in my armpits were swollen and sore for a week or more, and he looked at my chart and said I'd tested positive for EBV in the past. He asked if I'd been tired recently, and I said I had been, so I had more bloodwork done, and I guess my levels were elevated again, but when I called to find out the results, the nurse didn't tell me the numbers, but said I was having a flare-up of EBV. She advised me there wasn't much to do about it, but extra B-complex vitamins might help keep my energy up. After that, I started feeling worse for a while. Just like how you said- I got headaches every day behind my eyes, and just felt like I wanted to sleep all the time. It was a different kind of headache than I usually get, and it was as if the intensity of my fatigue caused this headache. And I still felt tired even when I first woke up. And I did feel like I was in a fog, and just exausted all the time. I started taking the B vitamins, but it took a little while until they started working. But I knew they were working, because if I accidentally missed a dose, my lymph nodes would swell up again, and I'd get really tired and fatigued again. I felt better while taking the vitamins, but it was a number of months before I could miss a dose of the vitamins without feeling sick again.
I think I'm fighting off another flare-up right now. My lymph nodes under my arms are a little sore and I'm getting that headache again. On Friday, I took an hour-long nap on my lunch break, then fell asleep again on the couch at 9:15 PM and didn't wake up until 11:45 PM. I never sleep for that long during the day! So I'm loading up on the B Vitamins again!

Good luck with everything! Keep us updated!

 
Old 03-04-2008, 08:30 PM   #20
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Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?

I had mono 3 times when I was younger (I'm 21 now). I got it the first time when I was 11, and then just kept getting it. What I was told was that I was a carrier. I didn't get the illness from kissing or anything, it was a complete shock to me and my parents for the titers to show up positive. Each time I got it, the symptoms didn't seem that bad except extreme fatigue, although the mono has been speculated to have triggered the juggernaut of my never ending autoimmune diseases. I don't think it would hurt to see an immunologist. I've heard that some people may test positive for mono several times, but that it may be a latent positive from the first infection with the virus. Hope you figure this out.

 
Old 05-05-2008, 03:45 PM   #21
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Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?

I am a 43 year old woman and have been diagnosed with mono again. I first got mono the summer between my junior and senior years of high school. I had it bad and was completely in bed except for my weekly trips to the doctor for 2-3 months.

I have not been the same since then.

Then, the past 6 months - a year, I have been very stressed and pushing hard at work and other things. I started getting more and more fatigued. I started having difficulties sleeping, heart racing at times ... I got worse and worse. I also had and still have the terrible brain fog, the dizziness and light headedness, even more extreme fatigue and weakness, loss of appetite, problems eating fatty or greasy foods, memory problems, sore throat, swollen glands, flu-like symptoms, body aches, complete exhaustion ... a few weeks ago, I had blood tests run, and they came back with a diagnosis of chronic/reactivated mono.

Here are my numbers:

EBV Acute Infection Antibodies (EBV Ab VCA, IgM) ... 4 Negative (under 100 is negative.)

EBV Early Antigen (Ag, IgG) .... 134 High (again under 100 is negative)

EBV Ab VCA, IgG .... 3,166 High (under 100 is negative)

EBV Nuclear Antigen Ab, IgG .... 772 High (under 100 is negative)

Then there was an interpretation chart:

Susceptible ... Negative VCA-IgM, Negative EA-IgG, Negative VCA-IgG, Negative NA-ABS

Acute Infection ... Positive VCA-IgM, Positive EA-IgG, Positive VCA-IgG, Positive NA-ABS

Chronic/Reactivated ... Negative VCA-IgM, Positive EA-IgG, Positive VCA-IgG, Positive NA-ABS

Old Infection ... Negative VA-IgM, Negative EA-IgG, Positive VCA-IgG, Positive NA-ABS

I am going to try taking Vitamin B. I've also heard taking Vitamin C helps.

I have heard that some people are taking Valtrex or other herpes anti-viral's and say they get better faster and don't have as many reactivations. Has anyone heard anything about this???? Others have also reported taking Famciclovir, Valcyte, Monolaurin??? Some have also reported taking collodal silver and garlic. Anyone with any knowledge of any of those or anyone try any of those???

Wow, it seems to me that the doctors I have seen don't know much about mono/glandular fever/EBV, especially when it is recurrent. Anyone know any clinics, doctors, specialists in this area? Any research in this area???

I am just not getting better, but seem worse even, but I haven't really been resting either. I hate to take off work much, but I may have to.

 
Old 06-03-2008, 10:39 PM   #22
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Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?

Hi All,
I am a middle-aged woman who's had several bouts of 'mono' like symptoms (high fever, sore throat, extreme fatigue) since last summer. Since my doctor kept dismissing it as a regular mono (spot test was positive) and nothing to worry about, I started researching about it myself. After reading many medical papers onlline. I am suspecting that I have Chronic Active Epstein Barr Virus infection, or CAEBV. Believe it or not, my own doctor refused to run additional tests I wanted so I could confirm or dismiss my suspicion. I'll be seeing another doctor soon.
From what I've read, CAEBV is a relatively newly recognized disease and more cases have been reported in Japan and Korea than the rest of the world. I don't mean to scare anybody here, but it is supposed to be very rare and when children get it, it is often fatal. For severe cases, chemotherapy and bone marrow (stem cell) transplant are used as treatment and the success rate is about 30%.
Here are some criteria for diagnosis of CAEBV:
1. chronic or recurring mono (IM)-like symptoms that last over 3 months;
2. Abnormal EBV antibody level (high VCA IgG and positive EA antibody or EBNA antibody negative);
3. history of sensitivity to mosquito bites (30% of patients);
4. increasing quantity of EBV-DNA in the peripheral blood;

From what I read on the net, I am starting to suspect that CAEBV is much more common than the medical professionals believe. I'll report back when I have my final diagnosis.

Please take care, all! Don't push yourself.

 
Old 06-03-2008, 11:06 PM   #23
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Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?

My son caught it in preschool when he was 4. Once you have it you have it for life...it hides in the body until you have some episode to bring it back to activity. Stress, or some other illness happening in your life. It never goes away. And each episode is pretty much like the the others...extreme tired and very low energy with other things of course. I would be very careful not to spread it to your children or husband and hoping you are not kissing on them when you are active....They told my son is not to share his toothbrush and eating utensils. He gets sick now and then but lives a normal life and is currently in the military.

 
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