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Anyone know their EBV counts?

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Ulcerative Colitis
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Posted 1/9/2013 3:02 AM (GMT 0)
Has any one have the actually number of their EB Virus counted? Mine ranges between 15k and 68k - for over a year now!! Both too high to start taking Imuran. I however believe there is a strong relationship between the two, but I have not found an article that describes how much worse the UC is when he EBV counts are up. Nothing so far seems to cure the EBV either.
Posted 1/9/2013 3:11 AM (GMT 0)
I've never had mine counted...I think? I had Mono when I was 17 but no one ever told me the totals. I was on 6mp for 6 years tho. How did you learn your totals?
Posted 1/9/2013 3:31 AM (GMT 0)
You get an EBV titer to get your totals, Red. My last one showed levels that were very high... indicating an active or very recent infection.
Posted 1/9/2013 4:07 AM (GMT 0)
So is that a reason to NOT use imuran?

One of the things that blew up for me before I was just hospitalized was that I grew this humongous, sort of four in one cold sore. Also, since I started imuran 7 days ago, I have one cold sore on my lip that popped out again that tingles every day
Posted 1/9/2013 7:40 AM (GMT 0)
I initially had my EBV checked by my GI doctor prior to me started imuran because if this is dormant in your body prior to taking a drug to lower your immune system the
ebb could go wild in your system if you start imuran. When he saw my high level he sent me to an infectious disease doctor to determine the significance of my high counts and to determine if I should keep working ...I work in a hospital. I never started imuran and I am still working and I have routine blood work about every 6 weeks (including an EBV ).

The problem for me is I can't find any information relating my more or less chronic
UC flare to actual EBV counts. Many articles suggest a relationship between EBV, mono, chronic fatigue syndrome, but no one mentions actual EBV levels or how to treat it. Valcyte did not work for me. I an convinced if I could get my counts down my flare would be better.

I hope this helps those following this thread. Hard to tell if I am totally tired and wiped out from EBV or from a persistent flare- including being up 3- 4 times per night!. Maybe the EBV is something everyone with UC should have checked and we could start our own study. I would actually like to have my Gi biopsy me for EBV in my colon at my next C-scope!

Sorry this post is so long, but ANY information anyone has on this topic would be greatly appreciated. PS - my ID doctor will not say that I have mono per se- just elevated counts because only for a short while did I have swollen lymph nodes etc.
Posted 1/9/2013 1:09 PM (GMT 0)
From what I understand, EBV has no treatments available but I did find this:

http://seattletimes.com/html/health/2003905929_astrid30.html
Posted 1/9/2013 1:23 PM (GMT 0)
I wanted to post this incase some of you didnt see it in another thread where we talked about a link to UC and EBV..

http://www.ncbi.nlm.nih.gov/pubmed/11816543

Steve
Posted 1/9/2013 2:50 PM (GMT 0)
What? My daughter's GI did not do any testing re: ebv or other infections before starting 6mp/imuran. I'm sure if I'd raised it with her she'd have rolled her eyes (she does have antibodies, don't know the number off hand). It's so frustrating that they rx these meds without any testing.
Posted 1/9/2013 7:05 PM (GMT 0)
Killcolitis, I am seriously thinking about getting tested myself. For now I am just trying things that they say may inhibit EBV like Ceylon cinnamon...I just added it to my diet. I always felt mine was related. And btw EBV is in the family of the herpes virus..I take Lysine at 250 mg a day. It is said to keep the herpes virus in a dormant state. I try to keep my lysine levels higher then my arganine levels. I got all this info reading about oral herpes since it is in the same family.

As of now there is no cure for it but they are finding some naturals that suppress and or kill it like the ceylon cinnamon.

Steve

Post Edited (twiggs) : 1/9/2013 12:08:13 PM (GMT-7)

Posted 1/9/2013 7:12 PM (GMT 0)
Steve, I'll look into those. I do know of cinnamon but that can be a gut irritant so I'm not sure I want to try it yet. My daughter's trying a few other things which are supposed to help reduce the levels though like olive leaf extract.
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