The coverage was excellent - we can only hope and pray that it will help to be a catalyst in breaking down the systemic bias that exists against this insidious disease. The following is the letter we wrote to W5.
Thank you for your comprehensive coverage on Lyme Disease. It was accurate and representative of the experience of the hundreds of Canadians that are battling this disease and the systemic bias that exists against it.
Our family has lived and continues to live this first hand. I went undiagnosed for 9 months before I was finally accurately diagnosed with Lyme disease...by that time, my Lyme infection had advanced to my brain and I had severe neurological impairment and was physically disabled. To add insult to injury, my diagnosis and the subsequent lab work that backed up my diagnosis was dismissed by most doctors. I did receive some IV antibiotic treatment from an infectious disease doctor. Unfortunately he stopped treating me prematurely because and I quote,
"I'm taking too much heat from my colleagues for treating you. Your improvement is placebo effect. Therefore I will no longer treat you nor see you as a patient."
We fought for continued treatment here in Canada for the following 2 months. Over and over again, we were told one of two things by the multitude of specialists I saw:
"There is no Lyme disease in BC."
"Doctors who treat Lyme in Canada risk losing their license. I cannot help you."
I rapidly deteriorated once the IV antibiotic treatment was stopped. When I began to lose my vision, we abandoned all hope for securing treatment in Canada. In order to save my life, we HAD to go to the United States for treatment. I am now under the care of the American doctor that was featured in your broadcast. Under his care, I am making great strides on my long, hard road to recovery but it is coming at a huge financial and emotional cost.
One last word:
This past week our child was seen by Rheumatology at Children's Hospital in Vancouver. We asked the doctor there about the possibility of Lyme Disease as a diagnosis.
“Is there any possibility that our child’s symptoms could be caused by Lyme disease?”
This simple inquiry was met with an instantly dismissive and angrily defensive response. and I quote,
"Lyme Disease does not exist in BC. It is IMPOSSIBLE to get Lyme Disease in BC. There are no ticks in BC with Lyme."
Our request for further evaluation for Lyme disease (eg Lyme Western Blot) was refused.
Lyme is a disease that can have a huge Rheumatic component to it. It is alarming to consider that a Rheumatologist seems to be so grossly unaware. Furthermore, it is grievous to us, that this doctor was immediately dismissive and unwilling to consider Lyme as a differential diagnosis - especially when all other Rheumatic conditions have been ruled out.
It's a good thing we know better.
Fortunately, our knowledge means that our child will get the appropriate and necessary evaluation to make an accurate diagnosis.
Unfortunately, we also know that an unbiased and thorough investigation for Lyme will not happen in Canada at this time...and neither will the treatment.