My Message to Senators and MP's about Lyme

On March 6th, 2017 I was invited (by MP Karen Ludwig and MP Elizabeth May) to speak to Members of the Senate and Federal Members of Parliament about my battle with Chronic Lyme disease on Parliament Hill.

Here is what I shared...

Background: 
"Kristy Giles has been in park and conservation areas management for 20 years.  She has a BSc in Environmental Biology and studied the health benefits of nature for her Masters.   She is also a certified Health and Fitness Trainer, who was adamant about fitness in the great outdoors and motivating others to experience all that was possible in parks and natural areas.” 

With my background I had a good handle on tick and Lyme prevention.  Yearly training at work always told me “if you are showing symptoms, let them know your profession, you are high risk”.  Yet, while on a 300 km hike along the Rideau Trail, by myself, it all failed.  

One night, I had 5 ticks on my back and one embedded in an impossible place to reach.  I eventually removed it and promised myself I would go to a doctor as soon as I got back.  I tested negative for Lyme, was sent to Infectious Disease where I also tested negative for Lyme. 

Later that year, I struggled with many illnesses.  My doctor said, “I seemed to be catching everything that was going around”.  Some described me as the unhealthiest, healthy person they knew.  Symptoms continued to build and my doctor became more concerned. More specialists - more tests - revealing nothing.  

I slowly but consistently declined, I lost feeling in many parts of my body, I lost my balance regularly, my short term memory was almost non-existent, as was my reading comprehension. I could barely follow a story line in a tv show. I was reverting to things in my past, getting lost and confused.  When I spoke, the wrong words came out. I couldn’t walk in the morning without support and the fatigue…In a few short years I went from running an ironman to barely being able to walk. 

In one last effort to seek help in Canada, I visited a locum at my doctor’s office, wanting to investigate Lyme further. She wondered “why did I want it to be Lyme’.  After refusing to review my list of symptoms she could only suggest we revisit the tests I had done over the last 3 years and wait for more symptoms to develop in case it was MS or ALS.  This left me no option but to travel to the US and spend (what has now amounted to) 70K of my own money. 

I was diagnosed in the US with Lyme and two co-infections, bartonella and babesia.  I was put on a strong antibiotic protocol for an estimated 3 years.  I sought out complementary treatment and travelled to another clinic in Utah.  I have battled many of my physical symptoms and am now on a new protocol to help my cognitive and cardiovascular symptoms.  

After some recovery, I decided to return to my doctors office to see if they would support or follow my treatment.  A different locum insisted I go off my meds since they only treat with Doxy in Ontario.  I explained I was dealing with Chronic Lyme, which I had for over three years.  No response, no suggestions, no assessment of my basic health indicators. 

A few months ago, my original doctor returned.  Her positive reception gave me hope. I referenced my last year since diagnosis to which she replied, “I read through the history, no need to go back through it.”  I referenced Lyme to which she responded “that is between you and your specialist”.  No questions asked - visit over - third doctor in ON - no basic vitals taken or interest. 

Like so many, I have been denied any long term disability.  While I go further in to debt legally fighting that decision, I am one of the lucky ones who might go back to work.   Except, I work with and manage many people who work in parks, the outdoors and in the field.  How do I do that knowing I am responsible for their health and safety.  If they are bitten the chance of them getting diagnosed, treated or even acknowledged is immensely low? 

I have been an advocate for the benefits of nature for decades.  How do I do that now knowing I am sending people to a hazard zone, where they will likely suffer physical, mental and financial  trauma. 
How do I send them there when my horror started in one of our famed Provincial Parks and the Provincial Health Care has neglected me at every turn.  This year more than ever, we are all encouraging people to get out into our parks and natural areas.  I hope we are also going to be there for them if prevention fails. 

I agree, the science needs to improve, but first the humanity around this illness must improve.  This is not an illness without a cure.  It just needs to be recognized and treated immediately.  Clinical diagnosis can only work when doctors are willing to learn what Lyme looks like and what the early to chronic symptoms really are.  If the consequences of treating this illness and the fear in talking about it continue to be as severe as it is, the situation has little chance of improving. 

Please take note: I, among hundreds of others I know, are not part of the Lyme statistics in Canada.  Many have tested negative in this country and have been diagnosed or treated elsewhere.  If we had access to all of the numbers, I wonder the epidemic we would be facing. 
I feel like hundreds of thousands suffering are so dependant on the words I choose to share with you today.  You see, the unfortunate part of this illness is that for many decades, too many have been too sick to fight for what is right.  We are at a critical point where those that are able are using what little resources they have to create change.  I plead with you to recognize the desperate need this time.  For many this is their last hope, for themselves and those at risk.  Ultimately, our whole country is at risk.

4 comments:

  1. Kristy -- this is beautifully written. I know you probably never foresaw yourself as a spokesperson for this disease and yet here you are representing so many Canadians on Parliament Hill. I know each one of them is indebted to you for sharing your story with the ears that hopefully, not only heard you, but, listened. Fingers crossed the next step is action. I will never be able to comprehend what you have gone through, but I know if there is anyone who can beat this AND evoke systemic change -- it's you.

    ReplyDelete
  2. Thanks so much for your support and encouragement from both you and your family. It means a lot and sure helps with the motivation to keep going.

    ReplyDelete
    Replies
    1. This comment has been removed by a blog administrator.

      Delete
  3. This comment has been removed by a blog administrator.

    ReplyDelete