Sunday, August 21, 2011

Epstein Barr Virus and Lyme Disease

In 2001, I was taking a bath when I noticed that there was a tick under my right armpit. I was so preoccupied that this creepy thing was attached to me and sucking my blood that Lyme disease was not something that ever crossed my mind; also, I didn't even know that people got Lyme in my state (I now know that it's in all 50 states and there are a lot of people with it in my state). What did cross my mind went more like this--Get this disgusting, creepy thing off of me, NOW!"

The timeline of what happened next is a bit of a blur, but to this day I still shake my head in disbelief that no one--not me, not the doctors, not my family or friends--connected my sudden problems with that creepy little life-ruiner under my armpit. I developed a severe case of mono (when I came down with Lyme-like symptoms again in 2009, it also presented as a very severe case of mono).

All of the sudden, I was waking up in the middle of the night with panic attacks. My throat felt like I was swallowing glass. I couldn't go anywhere or do anything for months. I had to have 'round the clock help to take care of myself. As the months went on, I suddenly found myself facing agoraphobia, debilitating anxiety and panic attacks, severe depression, restless leg syndrome so bad I couldn't sleep, separation anxiety from my boyfriend who I had moved in with and who selflessly took care of me through this agony (I married this wonderful man in 2002!).

Until I got sick again with Lyme in 2009, this case of "mono" in 2001 was the most painful thing I ever went through--including my two natural childbirths in 2003 and 2007. This should have been a red flag to my doctor that it wasn't just a simple case of mono! Again in 2009, this second case of mono became the new most-painful-thing-I've-ever-endured-in-my-life. I told my doctor over and over--This. Is. Not. Mono! ("This shooting pain going up my legs is not mono! This blurry/foggy vision is not mono! This joint pain, these tremors, mental confusion--and on and on and on-- are not mono...")

A few days ago, I took my kids to a new dentist. I was absolutely dreading telling the dental hygenist that my kids had contracted Lyme disease and several co-infections in utero from me and had been on antibiotics a lot (this is important information for a dentist to know, because antibiotics can affect the teeth). Imagine my surprise when the hygenist informed me that the dentist had Lyme disease, too! When the dentist came in, we started talking and I had mentioned that my Lyme had initially presented as mono and she said hers did, too!

I remember my doctor asking me surprisedly in 2001, "Are you sure you weren't around anyone with mono?!" My boyfriend and I were baffled at the time at how he managed to escape catching my incredibly contagious case of mono--aka The Kissing Disease--after being in such close contact with me before we knew I was contagious. Could the epstein barr virus, the virus that causes mono, be a tick-borne illness? Apparently, I'm not the only one who has wondered this question! 

Maybe in the future, doctors will ask people if they've recently been bit by a tick if they test positive for mono. And perhaps that could help lead more people to getting diagnosed properly with Lyme disease instead of being labeled as simply mono, when in fact, that may only be the tip of the iceburg!

9 comments:

  1. I contracted EBV too from the tick. I'm not sure what symptom comes from what infection, but am worried that although there is treatment for the bacteria - albeit controversial - there is NO TREATMENT for any of the viruses (I have EBV, HHV6, West Nile, and CMV)!

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  2. Thanks for your post, Alyson. I am continuing to learn...I can't say much on here as this is the world wide web...but this info helps me a great deal. I will research this idea further. Very interesting.

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  3. Wow, lots of people with EBV and lyme.

    I have no idea when I got Lymed, but in 2003 my fatigue (which I've had all my life) was so profound I was in yet another doctor's office begging for more test to be done. One week later my tests showed I had mono.

    I was working at a university at the time where a lot of students get mono. She said take three weeks off and all will be well. Three weeks later she said I was negative for mono and all better but I felt worse and had more problems.

    I wonder what the connection with lyme is?

    My brother had mono and had a very different experience. He had the worse fatigue ever but had more traditional mono symptoms than I and with two weeks of rest felt much better.

    I am wondering if the mono was a false postive for Lyme? I don't know if that is possible.

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  4. Started with swollen glands, stiff neck, super sore feet, sore joints, swollen ankles and feet, Migraines, fungus under big toe nail. Felt like I had the flu 24/7 could hardly get out of bed. I kept going back to my Dr. I definitely tested positive for Mono. A year later a moderate case of EBV. Another year later I'm positive for Lymes. We think the Lymes started all of this. Then in the heat of this all I went into Menopause, which I'm still dealing with that as well. One day at a time. Lots of antibiotics. Orally (amoxicillin) and I did IV antibiotics for one month (rocephen). It's going on 4 years now, still one day at a time. There were more symptoms, I just listed a few. Quite a few yeast infections my mouth and vagina. Walking phnmonia, nausea and diarrhea bad all the time, (on going) these symptoms and more. This is very hard to handle. Sleep is a problem. I feel anxiety too. I've been out of work for 9 months, after 28 years in banking. It's hard to be home all the time without the social scene. Planning to go back in June, I'm totally excited. Hope my health holds. Hope this helps someone else. I just kept going back to my Dr. I could tell there was something wrong with my body it kept telling me (Help Me) follow your instincts. Also my stamina disappered, working on getting ME back. Work in progress. Good Luck to all! :)

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    1. Good luck to you as well, and never give up!

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  5. Trying to get my son diagnosed from a "mystery illness". So far no leads except it started with Mono and now has EBV. Tired all the time, joint pain, swollen hands, feet, double vision, auras, pressure build up in the back of the eye, depression, migraines, back pain, often has infections. Does this sound like Lyme???

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    1. I left a comment for you below on the website.

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  6. I was finally diagnosed with Lyme Disease this past July. I went to three 'Lyme' doctors and even had a spinal tap. They all told me I did not have Lyme. I finally went to the best doctor around....Dr. Charles Crist in Columbia, MO. He looked at my Western Blot test and immediately told me I had "New England Lyme Disease". Symtoms included: fatigue; depression; blurry vision; dull headaches; short term memory loss; tinnitis (ringing in my right ear); poor concentration; occasional pain in joints; my ear would turn bright red occasionally; swollen liver; elevated liver enzyme - ALT; difficulty sleeping; tingling of fingers (like that "falling asleep" feeling when you lay on your arm) and other symptoms. It sure sounds like you need to find a LLMD....a Lyme literate Doctor. Well I went to 2 LLMD's and they still missed the diagnosis.......thank God I got to see Dr. Charles Crist MD; I believe he is the BEST and he has saved my life. I live in New Jersey and it was sure worth the drive out there.

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  7. I too have Lyme and got mono and I don't date.

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