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Monday, September 28, 2009

Lyme Rally Speech

This is the speech that I gave at the Lyme Rally at the other day! Of course, cause I couldn't memorize it *duh* I had to write it out ahead of time and read the speech, which I always hate doing. It feels like...cheating or something. But I think I still managed to speak from the heart. Enjoy!


(September 17, 2009)

Hello. My name is Nicole Bottles, and I too have Lyme Disease. More than a year ago I was just a typical teenager. In the space of a few short months I was no longer able to walk, remember things, go to school, or live in a way that could be conceived as tolerable, or acceptable. Imagine my dismay, that after seeing eight specialists and being tested for what felt like everything, doctors still had no idea what was wrong with me. Even though my mom brought up Lyme disease often, it was quickly discounted. I was 'too complicated' to have Lyme disease.

If getting a diagnosis in Canada is hard, it is impossible to get treated. I spent the past year in the United States, getting the drugs and care that I should have by right, been able to obtain here.

I wish my case was 'one-of-a-kind' and rare. But there are far too many people sick with Lyme Disease now for health agencies and government believe otherwise.

I am angry, and you should be too. Lyme disease is no longer just an East Coast problem. It isn't just in the United States. Ticks don't wait in long lines with their passports to cross the border. Lyme infected ticks exist in BC and across Canada, and to suggest otherwise is just avoiding a widely known and accepted truth. Lyme infected ticks are no longer just a thing in off-road parks, deep in the forest. They are in your gardens, on your pets, and your city sidewalks. Even on grounds of the Legislature you could find them! So politicians, it is time that you begin to wonder why nothing is being done, and it is time to act. We need your help. In our own country, with our universal health care, why are we being left behind? Forgive me for sounding like a child, but why aren’t you, the medical establishment, doing more? Don't you care? If I was your child, or niece or sister, would you let me down the way you have let us all down? There are thousands of Canadians suffering with Lyme Disease. The ridiculous, 'old school' protocol now in place for Lyme disease treatment is a joke. It doesn't help those who need it most; the people who were not diagnosed. The ignorant, blind-eyed approach that most doctors have is clearly not working.

It shouldn't be this hard to get well. I'm too sick to be fighting, not only the disease, but the bureaucracy to get back to my old life.
My request is simple, but the task is much harder. Simply, doctors need to be educated. Patients need to be diagnosed and we need to be treated.
Are Canadians ready to ask for what is necessary?
Do you see what we're up against?
Cause I do. I'm feeling it in my bones.
To those who still don't believe that Lyme disease is an epidemic that causes multi-organ damage, I would say 'bite me', but, gosh, believe it or not, something already did.
We are a group of ill-defined patients, literally, our lives defined by an illness that is as yet to be acknowledged in Canada. We need bridges to health not roadblocks.

As we continue to demand support, those suffering with Lyme disease please remember this quote by Margaret Mead:
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has.”

5 comments:

  1. Beautifuly stated!
    Have you ever read the blog created by a Lymie friend of mine in the UK? http://joanne-orangecottages.blogspot.com/ in my mind the two of you make a great team.
    Alison ( a Lymie Limey in Alberta!

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  2. Nicole

    Alison above passed on a link to your blog.

    I think you wrote such an amazing speach well done you for doing such a speach inspite of your health problems.

    It beggers belief that so many thousands of people can be suffering the World over because of a handful of doctors who wrote the 2006 discredited IDSA guidelines when simple antibiotics are helping people get better.

    Keep up the fight for recovery and to have your voice heard.

    Hugs from a fellow lymie.

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  3. Great speech Nicole,so glad you spoke at our event.

    Sue

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  4. i loved your speech! i know i didn't get to see you give it cuz i was away but your mum sent me a copy of it and i loved it! very thought provoking! and you made it very personal which is great, as it brings the listener in and their attention grows!

    you tell it like it is, of course, stay cool!

    xoxo Lisa

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  5. Hi Nicole,

    I saw the segment on W5. I also have lyme disease. Have you ever heard of phage therapy? A recent study has identified a bacteriophage (phiBB-1) that specifically targets Borrelia burgdorferi. Since the early 20th century, phage therapy has been used in the Republic of Georgia instead of antibiotic therapy. Phage therapy involves using a parasite's natural predators to treat illness. For more information, feel free to peruse the following links. If you decide to pursue this form of treatment, please let the rest of us Lymies know how it turns out.

    Cheers
    Pierre Ostrowski
    Winnipeg


    http://en.wikipedia.org/wiki/Phage_therapy

    https://www.researchgate.net/publication/12251603_Bacteriophages_of_spirochetes

    http://microbewiki.kenyon.edu/index.php/Borrelia

    http://www.phagetherapycenter.com/pii/PatientServlet?command=static_home

    ReplyDelete