Tese's Place: Learning About Lyme

Monday, November 11, 2013

Learning About Lyme

I was imagining how I might have lived my life had I known about tick born diseases and how difficult they are to diagnose. Would I not have gone outdoors as a child? What would I be like if I had not explored the big hay field and creek behind my childhood home? The woods at the end of the street - what if I hadn't played in those? And, as I got older, would I not have taken my dog hiking in the mountains, woods and fields? Could I have escaped the disease if I had played life differently? Clearly I can't go back and do it all over, so this was a futile mental exercise. Recently I have been imagining my life after this body recovers from these little critters and the havoc they have wrought on it and my mind. It's got me a little giddy.

My history with Lyme Disease goes something like this: I got sick at some point, not sure exactly when. I can trace a rash and illness back to when I was pregnant with my oldest child, Coleman. But I can also say there were changes in my health a few years before that. Once Coleman was born my illness became dramatically worse. Symptoms were all over the place. A friend suggested I get tested for Lyme Disease. When I asked my doctor she said: "You don't have Lyme Disease. You're supposed to feel this awful, you just had a baby." My baby was about to turn one. I insisted. The test came back positive. I was treated. I got a little better but not entirely. And then I lived with it. For 12 years.

Two months ago I watched this movie: Under Our Skin, which you can watch streaming on HULU or Amazon. Hope for being myself again was renewed. But not before a tiny bit of despair set in. I spent a lot of time researching Lyme Disease and its co infections right after watching the movie. I became overwhelmed. Then I made an appointment. I found a doctor through searching "Lyme literate doctors" in my area. Lots of blood tests happened. Results for my blood tests came back positive for Lyme and Bartonella.

This is still a highly controversial disease. It's under reported. Misdiagnosed. Misunderstood. So often we need to learn to listen to ourselves and trust ourselves in the face of experts telling us it just can't be true. It must be in your head. If you're interested in reading more about diagnosing and healing Lyme and Coinfections here are books and a website for you: