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Epstein Barr Virus (EBV) Community
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Avatar universal

Epstein Barr or something more? Will I ever feel better?

I've been sick and run down for at least 8 months. I've had to quit teaching. In order to have energy to take my kids to their practices and games after school I have to lay around the house all day. I am only 25 years old and before I got hit with this illness I ran 3-5 miles every day, taught first grade, and coached my kids soccer teams. I am barely a ghost of my former self. I've had 3 blood counts and a lymph node biopsy which turned up nothing malignant. I've had "shotty" lymph nodes in my underarms, neck, and groin for at least 6 months. I had a recent ultrasound of them and they are benign appearing shotty nodes. I've had a daily headache since October which is debilitating. I finally got someone to order an MRI of my brain after suffering for 5 months and it showed 4 tiny lesions in the white matter of my brain indicative of a demyelination process. My neurologist thinks this has nothing to do with the EBV and is doing a lumbar puncture to see if I have MS. I don't have symptoms of MS and I just don't think that is what is going on. The only thing I have tested positive for is recurring EBV infection. I have an active infection. Is it possible that this is causing the demyelination and what can they do about this for me? My neurologist isn't interested in pushing further if it's not MS because the lesions are tiny. I don't think it is coincidental that I've had a headache for 5 months straight and now there are lesions. I dont think the lesions are causing the headaches but are a result of them. Doctor doesn't think it is connected at all. I'm not a doctor but doesn't it seem like there must be inflammation in my brain? I don't know what to do. Doctors don't take my symptoms seriously because I'm so young. The only reason I even got the MRI was to shut me up. They didn't expect to find anything. I can't go on like this I'm miserable. Will I ever feel better? Can Epstein Barr cause all of this or does it sound like something more is going on? I don't expect to get diagnosed from this, I'm just wondering if anyone has gone through anything like this and if anyone has advice. I am still actively pushing doctors for answers but they act like there is nothing wrong with me. I'm treated like a hypochondriac.
2 Responses
Avatar universal
Hi scmommato3,

I am run down as well.  Now I haven't experienced all you have.  I didn't even know I had ever had epstein barr to be able to have a flare up however in December I had to take Amoxicillin for what they though was a sinus infection but turned out was an abscess in my tooth.  After a week of that dentist switched me to Clindamyacin.  I've read that it's known that Amoxicillin can induce a flare up of ebv.  Didn't think to test myself for ebv in December.  Just though it was the abscess and antibiotics kicking my butt.  But the fatigue and fever feeling (without really having much of a fever) and the bone/joint pain and the apathy and disconnected feelings were just too much.  In late January I'd asked my endo to test for ebv and sure enough it came back positive.  I'm doing as much research as I can.  I will let you know what I find.  There are other disorders one can acquire.  I think though it's important to focus on eating habits, supplementation, juicing, hydration and rest.  Please let us know if you learn anything new.

I've also read that people react well to Low Dose Naltrexone.  

I thought I was getting better because I feel way better than I did in Dec into Jan (couldn't barely get out of bed in my free time, felt like I could die any minute).  Now I feel like I"m functioning better but in saying that some days are awful, like today.  I'm at work but I feel desperately like sleeping.  I cannot wait to get home and rest.  

I've read folks taking turmeric and b vitamins and some folks putting onion slices in their socks overnight to remove toxins, probiotics, bone broth, epsom salts for detoxifying, and a mix of lemon, ginger, turmeric and orange in an juice with skins.

I don't if anything I've said here helps you in anyway, but I do wish you relief.  And me too.

All the best,
Jen
Avatar universal
Hi Jenn,
Thanks for your response. You've helped me by making me feel like I'm not alone although I'm sorry you are suffering too. It's interesting that you had a flare up after being on an antibiotic. I was on IV antibiotics about a year ago because of a nasty toe infection (I dropped a vase on it and it split open and became infected). I wonder if that started all of this. I'm so discouraged from being sick all the time! With spring coming I'm depressed because I wish I felt like getting out and doing things with my kids. I will try your tips on detoxification. I will do anything to feel better.

I hope you feel better too.


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