Sunday, December 12, 2010

My Lyme Disease is not the IDSA Lyme Disease: Alyson

What do you do with your own personal story about your battle with chronic Lyme Disease after reading the article recently published by the Chicago Tribune, flatly denying the very existence of your illness? After all, the truth is right there in the article for all to see: chronic Lyme Disease doesn't exist.

Yet for some reason, more and more people just like me are falling ill from a complex form of Lyme Disease, complicated by multiple co-infections (also transmitted by tick bites), which not only cause their own set of symptoms, but can be just as debilitating and tricky to diagnose and treat as Lyme itself. Perhaps our cases don't become complex and difficult to treat until, like mine, they've been misdiagnosed for months or years, the very reason Lyme Disease becomes chronic: a topic, interestingly, left out of the Tribune's article.

For those of us attempting to speak up against a seemingly well-written article written by an influential source, who is left out there to hear our voices and our desperate pleas for more research on this disease? Honestly, who in their right mind wants to read long and drawn out stories about people enduring endless pain from a disease that is considered by most to be obscure?

According to the IDSA (Infectious Diseases Society of America) standards, I no longer have Lyme Disease. I've completed a short dose of antibiotics. I should be better. Case closed. But something is wrong with this picture: I'm still gravely ill. The problem is not whether or not chronic Lyme exists, but the lack of a clear-cut way to treat it. Unfortunately, the IDSA guidelines don't always work for the complex cases on the rise, cases that are often riddled with co-infections and years of misdiagnosis.

There are gaping holes in the research on Lyme Disease. The Chicago Tribune's article serves only to detract from the problem at hand: much is unknown about the complexities of Lyme Disease. How dangerously arrogant of the Tribune to assume that the Lyme puzzle has been solved, a chronic form doesn't exist, and wash their hands of the whole mess!

Ticked Off by the Tribune

-You can read my explanation of what it feels like to have Lyme Disease here.
-I published my initial reaction to the Chicago Tribune Article here.

Read Other “My Lyme Disease is not the IDSA Lyme Disease” stories:
Alix’s letter-
Andrew’s letter-
Brooke’s letter-
Candice’s letter-
Eric’s letter-
Heather’s letter-
Kim C’s letter-
Kim T’s letter-
Molly’s letter-


  1. Please tell me you sent this to the paper!

  2. I was going to say the same thing -- I'm sure they'll get lots of comments, but yours is rational and gets the point across so well.

  3. I haven't sent it in yet, but it is on my list of things to do today. Hopefully I will remember!

  4. Very well written!

  5. Nice job! I just wish I had the brain power to write ANYthing other than biochemistry factoids right now.

  6. Alyson,

    I'm glad to have found your blog. I'm going to post a link to your story from mine. I'm sorry to hear you're so ill. Hang in there... there is hope despite what some would have us believe.

  7. I've really learned a lot reading this blog! Keep it up!

  8. I really appreciate your post and you explain each and every point very well.Thanks for sharing this information.And I’ll love to read your next post too