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MY STORY - as told to CTV NEWS

Posted Jul 12 2007 12:00am
I have Lyme disease.

I have been sick for over a year. It took nine months, countless tests and numerous visits to many doctors before I was finally diagnosed.

In my journey to diagnosis, I believe that the doctors I saw did their job to the best of their ability. Lyme disease is called the great imitator and I was tested for most of the diseases that Lyme is said to mimic. But many of my symptoms were quickly dismissed as too vague, too diffuse and non-relating.

And as the plethora of test results rolled in as "normal," I was met with the innuendo that possibly my problems were in my head. Or, maybe I was just depressed.

In my experience, there was a failure in the medical community to recognize the symptoms of Lyme disease. I went from doctor to doctor, carrying around a detailed list of my symptoms. I was not aware that I was experiencing 57 of the 75 symptoms listed on a diagnostic checklist. In essence, through my detailed list, I was unwittingly writing a story of the classic progression of Lyme disease.

Yet, it went unrecognized and unacknowledged for nine long months.

I recognize that I was fortunate enough to have a general practitioner who was as frustrated as me by my perplexing medical symptoms. And while my request for a Lyme disease test was not met with resistance, she did make it very clear to me that the serological (blood test) results would be the measure by which she would base a diagnosis.

In my quest for knowledge about this disease, I have quite easily found a plethora of information on the importance of diagnosis being made based on clinical presentation of symptoms, as opposed to serological results.

It is beyond me, then, that doctors are still unaware of the insensitivity of Lyme tests, and therefore are inclined to rule out the disease in the presence of a negative test. Even the Centers for Disease Control in the U.S. has gone on record stating that commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.

Furthermore, how is it that we in B.C. are still so misinformed about the symptoms and the need for a clinical diagnosis of Lyme disease? In fact, we seem to be woefully unaware or unwilling to even acknowledge the prevalence of Lyme disease in our great province?

That ignorance has cost me nine months of my life.

However, I am not interested in assigning blame to the doctors' that missed my diagnosis. Yes, it was a difficult, terrifying, disheartening and frustratingly long journey to diagnosis. But to point fingers and fling accusations is a counterproductive process. It only serves to put those on the receiving end of it on the defensive. And when we feel the need to defend ourselves, the opportunity to teach is lost. The willingness to listen and understand another's experience ceases to exist.

My intent in sharing my Lyme journey is to help bring awareness to the reality of this insidious disease in B.C. and to help educate those that are willing to listen.

My hope is that my story will not fall on deaf ears but that those who hear it will be willing to acknowledge the existence of this disease in B.C. And their acknowledgement will lead the way for change and action in the fight against Lyme disease.

This disease had nine months to disseminate and invade virtually every system of my body. And while I am now faced with the reality that it will be an uphill battle to restore my health, I am buoyed by the knowledge that I finally know what it is that has so radically altered my ability to live my life.

Now armed with this knowledge and under the care of Dr. Ernie Murakami, I am waging war on it.

As a result, my children are getting their mother back and my husband is getting is wife back. In essence, we are getting our life back.
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