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Epstein Barr Virus (reactivation)

post #1 of 7
Thread Starter 

I just received my diagnosis today... I am a bit confused and troubled by this, as I know that EBV is linked to a higher incidence of other health problems, like MS and lymphoma.

 

I noticed in early September 2012 that I had a REALLY swollen lymph node (about the size of a golf ball) above my left clavicle, but when I looked up swollen lymph nodes online it sounded waiting a few weeks before seeking treatment can be a good idea as the swelling can resolve on its own. I had experienced the worst cat scratch of my life about a month before noticing the swelling, so I figured cat scratch fever, which normally resolves without treatment.

During this 2 week waiting period, DH's internship (with good insurance) ended and we moved about 250 miles with no help and a toddler. I put it on the back burner.

Later, when I noticed that the lymph node on the right side was also enlarged and the left was no smaller there was no extra money for a trip to the doctor.

DH is done with school now and working so off to the doctor I went, and due to the fact that I am pregnant I was required to have a few blood tests done (they would have given me antibiotics to start with otherwise) and I am negative for cat scratch disease, but apparently positive for Epstein Barr and a high white blood cell count.

I had mono when I was 15, so this has to be a reactivation. I've had chronic fatigue for about 4 years now, but until this I've gone along with the crap people have said when I've mentioned my exhaustion. "Oh, you've gained some weight recently, it must just be that." or "Of course you're tired, you're pregnant." or "You have a newborn, everyone knows that's tiring." I stopped talking about it when DS was a few months old. No one seemed to care and I had enough to deal with trying to stay awake during the day.

 

I'm looking for stories of other cases of EBV (reactivation). I'd love to know if it resolved (and what you think helped with that), and if not, how has it affected your life? Have you been diagnosed with anything worse since then? Anyone have swollen lymph nodes with a reactivation of EBV? If yes, how was that resolved?

 

Thank you, my head is kind of spinning right now. I really need some real life info about this, rather than pure medical mumbo-jumbo.

post #2 of 7

So sorry to hear of your EBV. I know we've had a few members discuss their own EBV. If I can find the threads I'll link you to them. 

 

Well wishes to you and hopefully you can connect with other Mothering members in the same situation who can lend support and advice. thumb.gif

post #3 of 7
Thread Starter 

Thank you, Cynthia.

I've searched for threads about EBV, but most appear fairly old. I hope that a few people will chime in both for my benefit and in case someone else needs the information.

post #4 of 7
Thread Starter 

Bumping. Surely someone can chime in?

post #5 of 7

nak/excuse the brevity and typos

 

I have ebv flareup now and again.  What do you specifically want to know?

 

When I know I'm in  the midst of a flare up, I take mega amounts of vitamin c (to tolerance), vitamin d and probiotics.  I lay off the wheat and the dairy and take coconut oil AND cod liver oil AND flax oil daily.

 

I never seem to know when I'm about to get ill until it is too late and yes, the first thing that starts to bother me are the swollen neck glands, sore neck and feeling extremely tired.

 

I also got the "you have small children"/"you're pregnant/nursing" line from people and currently now, like you, don't discuss this with anyone, including dh, because, honestly, no one gives a rip.  Afterall, they are just as tired as you are, right. ugh.  They can't handle tired LOL.

 

Feel free to pm me if you want.  I will be happy to correspond with you regarding this matter.  It is just really difficult to type with baby nursing right now.

 

Emily

post #6 of 7
Thread Starter 

Thanks, Emily! I appreciate you taking the time to respond to my thread!

 

I'm curious about how often ebv flareups occur/last. How quickly are you able to end a flareup? Mine has been going on for at least 9 months (when I found the first swollen lymph node), despite trying to improve my immune system.

Is there a night and day sort of difference in your energy level when you're well vs. having a flareup?

 

I'll send you a PM sometime soon. I feel so much better knowing that someone understands!
 

post #7 of 7

nak/

I usually get a flare up once a year, maybe every two.  I am on my own more often than not without much (any) help so flareups probably occur more frequently for me than for others.  Certainly during/after any significantly stressful incident  - childbirth, death of parent, homeschooling (don't do this anymore for this reason).  I'm pretty sure my first reactivation (at least in recent memory) lasted about 3 years before I even had a clue what was going on.  I was wiped out.  Now, I can usually kill one off in about 2 months with a good diet and ample supplementation of vitamins and minerals....especially vitamin c.

 

I don't know why but it never occurs to me that I'm starting a flare up until I've gone a few weeks feeling miserable, wiped out, stiff/sore neck with swollen glands.  Guess I'm just a little scatterbrained.

  And yes, the difference in energy levels is night and day.

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