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!


Sincerely,
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- http://bit.ly/gJoITn
Andrew’s letter- http://bit.ly/efOBxw
Brooke’s letter- http://bit.ly/hweVql
Candice’s letter- http://bit.ly/i3FARF
Eric’s letter- http://bit.ly/ibWfPW
Heather’s letter- http://bit.ly/fAinvr
Kim C’s letter- http://bit.ly/g7MRT9
Kim T’s letter- http://bit.ly/fFVHmO
Molly’s letter- http://bit.ly/hoZaQU

My Two Cents

Yesterday, an article was put out by the Chicago Tribune about a very touchy subject: the decades-long war that has been waging over the existence of chronic Lyme Disease. If you haven't read the article, you can do so here. This is my response to the article:

Lyme Disease is riddled with politics. A fierce and ugly battle has been raging for years over the very existence of chronic Lyme Disease. Columbia University Medical Center's Lyme and Tick-Borne Diseases Research Center explains part of the Lyme controversy here.

While scientists, doctors, insurance companies, government agencies, and anyone else who can join in, are so busy fighting over every single aspect of the disease, the victims, those caught in the middle of the Lyme war, are left to gather dust in the corner. We are expected to wait and suffer quietly, while the never-ending debate rages on over how to handle us. In the meantime, our stories of endless pain and agony are being swept under the rug.

Having Lyme Disease makes me feel like a young child whose parents are on the verge of a nasty divorce. Both Mom and Dad are pulling my arms in different directions, because they both know what's best for me, but they can't seem to agree on the same thing. When it comes to Lyme Disease, everyone wants to be the parent, everyone knows best, and everyone wants to be right. "Chronic Lyme exists." "No it doesn't." "Yes it does." Sometimes, when there is such a fuss over whether or not someone is right, you forget what you're even fighting about. And if this battle goes on much longer, no one with Lyme Disease will have any arms left! It is time to take a breather, stop fighting, and do more research!

There is a gaping hole in the Tribune's story that really needs to be addressed. At the top of the article, there is a picture of a man who was misdiagnosed as having Lyme Disease, when in fact it turns out he has been suffering from cancer. It is, of course, a heartbreaking story, but we are not shown the other side of the story: those who have Lyme Disease, but have been misdiagnosed--the very REASON that Lyme Disease becomes chronic.

Most doctors do agree that when caught and treated early, Lyme Disease is pretty easy to cure. The problem lies in what to do with those of us, like me, who do have Lyme Disease, have already done our short course of antibiotics, and aren't cured. The tests show it's still in our bodies and our symptoms are still there. Our symptoms do not lie. Is a cancer patient abandoned if one round of chemo doesn't cure them?

According to a study published by the New England Journal of Medicine, "There is considerable impairment of health-related quality of life among patients with persistent symptoms despite previous antibiotic treatment for acute Lyme disease. However, in these two trials, treatment with intravenous and oral antibiotics for 90 days did not improve symptoms more than placebo." The problem lies in a lack of effective treatment for the chronic form of Lyme Disease, not whether or not a chronic form of the disease actually exists.

There is so much that is unknown about Lyme Disease, especially those cases like mine that have gone misdiagnosed for months or years. The sad thing is, many people (doctors included) will read the Chicago Tribune's article, and believe every word of it, when in reality, scientists have only touched the tip of the iceberg in what is known about Lyme Disease.

I have enough pain in my body already from Lyme Disease without adding all of this controversy on top of it. To me, the answer is this: stop bashing each other and do more research!