Not Your Average “Mono”

Epstein Barr least it's pretty, right? ;)

Epstein Barr Virus…at least it’s pretty, right? 😉

There is some confusion about what CEBV (Chronic Epstein Barr Virus) actually is.  So, let’s map things out so we know where we are.

CEBV is not mononucleosis.  While “mono” is caused by Epstein Barr virus, it is an event, not an ongoing condition.  You get it, you get over it.  That happened to me in my late 20’s.  Missed a week of work.

CEBV is when the virus (which remains latent in the body, once you’ve had “mono”) decides to set up housekeeping.  With CEBV, the virus is no longer content to be a wallflower…it wants to take center stage, at least now and then.  On these occasions, one is said to have a recurrence or reactivation of the virus.  This results in all the regular symptoms of “mono” (fever, extreme fatigue, swollen painful lymph glands and perhaps spleen/liver) but you get extra bells and whistles thrown into the deal, like:

“…aggression, allergies, anxiety, cold sweats, confusion, decreased alertness, reduced motor skills, minimized stress tolerance, depression, trouble concentrating, trouble completing mathematics or other reasoning tasks, trouble urinating, dry cough, earaches, excessive worrying, severe fatigue, fever, headaches, hostility, hypersomnia, increased nasal congestion and dripping, irritability, insomnia, ringing of the ears, shingles, paranoia, sore throat, sore muscles, joint soreness, tremors, light sensitivity, mood swings, mild delusions and/or migraines.” 

The things I have going on are in bold (I think there are a lot because the condition went so long misdiagnosed, so I kept pressing on)…and may or may not overlap with my fibromyalgia diagnosis and/or the very pleasant manifestations of perimenopause.  Even the doctor I saw agreed with me that it is very difficult to discern where one set of symptoms begins and where another ends. I love a good mystery, don’t you? 😉

I had a lot of these things happening intermittently over the past 15 years or so.  It never occurred to me to be tested for CEBV.  When my throat started swelling, and the area under my rib cage began to become tender, it all came flooding back to me from my 20’s…wow, this feels like “mono”.  I did some online research (my doctor, unlike some, enjoys having patients who read up on stuff), and made the appointment.  In a few days, there it was in the blood test results.

At last, a diagnosis.  It was not in my head.  There it was, on paper.  I felt oddly giddy to be able to call it something!  Now that we know who the “enemy” is, we can formulate a plan of attack.  See the protocol given in the tabs at the top of the page.

If I could say anything to encourage you, if you have a still-nameless condition, aside from prayer, is don’t stop reading, and asking questions.  A good physician won’t think any of your queries are dumb…if they act like they do, find a new one!  Don’t listen to people who have not walked in your shoes and read one article in a woman’s magazine, ready to slap a diagnosis on you.  Keep forging ahead!  If I can pray for you, please let me know.

If you have someone in your life who suffers from a chronic health challenge, the number one thing you can do for them is to read up and understand it.  My husband just recently made sure I ordered this little book of encouragement, and then read it himself.  It was a very romantic thing to do! 🙂

13 thoughts on “Not Your Average “Mono”

  1. I’m so glad that you finally have a diagnosis and a treatment plan! I’m sure that’s a great relief.

  2. Yes, I’m very grateful. Having gone for 15 years not knowing and going to this doctor, that specialist, taking this pill, that supplement…I’m very mindful of the frustration that others feel who do not yet have a diagnosis. My heart goes out to them!

  3. Hi, oh my goodness thank you so much for making this article. It helped me realize that I had mono and some days I feel like I have it again. I’ve had trouble sleeping for the past 3 months. Your article make me think, it’s time to get a blood test.

  4. I was also just diagnosed with chronic epstein barr. I’m 37 with too young children. I am seeing a doctor who has me on monolaurin as well as a variety of other vitamins, in addition to sleeping 9-12 hours per night with a 1-3 hour nap each day….so hard. How did you come up with your protocol? I will keep you in my prayers….please do the same for me 🙂

  5. Hi Susan, I’m sorry you’re in the same boat with me…but at least we can encourage each other! My protocol was compiled between my chiropractor and my naturopath, both of whom are Christians. What a blessing! I’ve already felt more energy…but it is hard to remind myself to slow down now…which is important. In addition to what is listed in the protocol, I also do a daily Shakeology shake, which is very nutrient/probiotic/enzyme dense. I make it with almond milk and a little ice. You can find the product on eBay less than on web pages sponsored by the company or its affiliates. FYI. Saying a prayer for you now. Thanks for visiting, and I hope you’ll be a “regular” so we can all help each other to keep moving forward! 🙂

  6. I had mono at age 22 and ever since, if I get 6 hours of sleep or less three nights in a row, my neck glands swell up and stiffen, and I feel disabled with fatigue. Restful sleep cures the swelling within a day or two. I didn’t get a blood test with the initial mono infection, as the doctor was certain I had it with all the symptoms I exhibited. But I’d be shocked if I don’t have CEBV now. Maybe it’s time for a doctor visit and a blood test. Thanks for this post. I enjoy your practical advice and your godly encouragement.

  7. I totally get what you are saying! I have found that esp the lymph glands in my neck get jazzed up when I am stressed/not rested. And, as I have increased my vitamin C intake and my homeopathics, there has been more lymph gland activity. I am hoping to have energy to walk some very soon, and will be interested how that affects things, since the lymph system has no pump but physical movement. Stay tuned. 😉

  8. Hi Diane…Hope you’re feeling better. I start transfer factors on Tuesday after 2 months of monolaurin. My girlfriend just sent me a really interesting article on low body temp. I’m not sure how to include an attachment here, but I’ll send it if you email me…

  9. I forgot that you sometimes have fevers, if I remember correctly. Its a long article talking about how a low body temp (which I have) is associated with chronic viruses, cancer, chronic fatigue, fibromyalgia etc. Just worth the read if you happen to have a consistent low body temp. I don’t have thyroid issues either.

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