November 14, 2009


you can watch the W5 episode on Lyme Disease, "Out of the Wild" online by going to the following link:

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 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.


Joanne said...

I am so sorry to hear of your continued struggles for diagnosis and treatment for yourself and child.

I found your blog through Rennee's I too have Lyme Disease although 100% on antibiotics nearly so one of the lucky ones. Here in UK things are getting worse as our Health Authority is trying to shut down the handful of private doctors currently treating lyme agressively as it so often needs.
This was an excellent letter and post.

Best wishes with your struggles.

Anonymous said...

Well said Shannon. I sent a note as well - I'm sure their inbox will be overflowing!! Their report was excellent and, if nothing else, gives viewers insight into the world of the lymies and what they go through. Maybe someone with the power to make changes watched the episode and is thinking hmmmmm!

Kara said...

Wow! What a great segment they did on Lyme Disease!! Super duper terrific. My heart goes out to those all over who are suffering from Lyme and being mis-diagnosed. It is a tough road to travel.

I went from doctor to doctor for 7 years and was mis-diagnosed and told there was nothing wrong with me over and over again. I knew I was sick and so did my family and friends. Doctors couldn't find anything wrong on my labs. All the while my life was slipping away. Quite a few doctors suspected Lyme and ran the tests -- the run of the mill tests and they came back negative -- no positive Elisa or bands. Therein lies the biggest flaw of all. Doctors need to learn to be doctors again and treat the patient, not the labs.

Finally, in Dec 2007, went to an LLMD and was diagnosed with Lyme and co-infections. More sensitive labs verified it is Lyme.

Hope this news story opens eyes and ears for the medical community in Canada. Also hope some suffering can be shortened by patients finding answers by watching this.

Terrific job! ~Kara

Kathryn said...

Great letter - being reminded again of BC doctors refusal to admit Lyme in their own province, my curiosity brought me the to the Regina health website to see what they had to say about Lyme in Saskatchewan. Well, they admit it exists, although rare. However, they said 2 or 3 times how much more prevalent it is in Ontario and BC. Go figure!