Archive of ‘speech’ category

Let’s Talk About Lyme ~ Awareness Event

If you hike, bike, garden, play outdoors with pets or kids, this event is for you!


I’m really pumped to invite you all to our local Lyme Disease Awareness month event: Let’s Talk About Lyme. If you call Victoria, BC, Canada home, or are close by or visiting we would love to share an afternoon of uplifting stories, hope and awareness. This is the event I wish I’d gone to before I got sick! 
We have some amazing speakers lined up (The MP’s Elizabeth May & Murray Rankin, and Jim Wilson of CanLyme will be there! And some seriously cool activists – like Gwen Barlee…and Lyme disease patients. I will be speaking as well!). 


Saturday, May 10th from 12:00 pm- 3:00 pm
At the Fairfield Community Place, 1335 Thurlow Road, Victoria, BC Canada (behind Moss St. Market!)

Invite your friends, family and neighbours and local groups. Check out our Facebook Event, and share and invite to your heart’s content!


Want to help out? We’re looking for volunteers to help set up & take-down, and help with kids craft (we’re making modelling clay ticks! and doing a faux-tick drag for kids…and there is a colouring table…just saying…it’ll be a blast.). If you’d like to help out, please email me for more information @ [email protected]


feel free to share the poster with friends, family, neighbours, co-workers…everyone. let’s stay safe this tick season.

Lyme-infected ticks are here on Vancouver Island! Join us for an afternoon awareness & prevention event featuring awesome children’s activities, amazing guest speakers, prevention and awareness booths and videos, and speak with local health care practitioners.


See you on on the 10th of May!


Ps: Visit the Victoria Lyme Disease Awareness & Support Group’s website at: www.LymeVI.ca

World Lyme Day Celebrations: Victoria BC

May 11th was the first international World Lyme Day Celebration! There were rallies in over 25 countries, including Victoria, BC (we’re the capital of the province!). There were so many people there, who’d come from as far away as the interior BC just to be at this event. It was so amazing to meet all the Lymies (people with Lyme) that’d I’d only ever communicated with electronically! Elizabeth May, Lana Popham, Murray Rankin, and David Cubberly spoke about the changes their trying to create, and Emily (who’s dad is very sick), Avery & Shannon(mother/daughter), and I spoke about how Lyme impacted our lives, and about having Lyme disease in Canada. Many other patients got to share their stories, poems and experiences…it was a very cool experience for us all. 

Lyme Disease patients, and their friends and family

There was such a positive energy running through the group…it feels like we are all coming together to create positive change, which is so cool! Here’s my speech, below:

Thank you so much for being here today. When I realized I was too sick to walk, I thought I’d be in a wheelchair for a few weeks, until we figured out my ‘mystery illness’. 5 years of therapy later, I’m still rolling along. Breathing problems and increased headaches began in grade 8, escalating gradually ’til in 2008 I began feeling fatigued, and experiencing worsening joint pain, nausea, confusion, memory problems and all over body pain. We made the rounds to the offices of many specialists, none of whom could figure out why I went from being a healthy, active teenager to a girl barely able to walk or function. I was tested and retested for what felt like everything. In desperation, my mum researched what could possibly be ailing me. Turns out I had most of the classic symptoms of Lyme disease, and yet each doctor we went to assured us I couldn’t have Lyme.  Like so many other Canadians, I had a negative test result, which for my physicians completely ruled out Lyme disease. Versus making a clinical diagnosis, most doctors rely on a flawed lab test to diagnose Lyme disease. As a direct result of this failure to diagnose me, I’ve been fighting for my life for the past 5 years. If someone is diagnosed and treated immediately, just a few weeks of antibiotics should see them returned to health. Sadly, my story is like thousands of others across the country, who trusted the medical system to get to the bottom of what was ailing us, and were let down. I was one of the lucky ones who was able to seek the guidance of four leading experts in the US. Our family home was sold, bank accounts and lifesavings drained. Friends, family and strangers donated at fundraisers in order to fund my treatment outside the country, which isn’t covered by our provincial health care plan. To this day I still have no diagnosis in Canada, and I continue to be treated in the US.

I spoke and attended the 2009 rally on these same steps. I can’t help asking myself what’s changed in 4 years? When  first became ill, most people we met had no idea what ‘Lyme Disease’ was. Now when we meet people, most everyone has heard of Lyme disease, even if they didn’t know it could be so debilitating. This broader awareness is thanks to us; the patients and their families and friends, the reporters who’ve featured stories of the lives changed by this infection, the politics surrounding it and the politicians fighting for change, like those here today. 

When I found out I had Lyme Disease in 2008, I made myself a promise that I would do everything in my power to prevent other people from having to go through what I did. 
I envision a day when the diagnosis of Lyme Disease evolves to the point that a patient with a tick bite would be preemptively treated, instead of being told it was probably a spider bite, or to come back if they developed symptoms. 
I envision a day when doctors receive the education critical to clinically diagnose Lyme Disease, versus relying on the flawed testing available in Canada. 
I envision a day when doctors are free to treat patients as they see fit, and not be limited by outdated treatment “guidelines”. We have seen too many doctors driven out of practice.
 I envision a day when Lyme Disease would be explored as a possible diagnosis long before the patient was left with a ‘mystery disease’ label. 

What Lyme patients need now is compassion and assistance, not dismissal and denial. There is an opportunity, with the National Lyme Disease Strategy Bill, for medical professionals, patients, and advocates to have a crucial conversation, address issues and formulate concrete solutions. I am asking our elected officials to debate this issue and begin creating solutions that would benefit all Canadians. We patients are too sick to create these changes on our own, and we need your help. 

I imagine a time when a simple, reliable test and effective treatment for Lyme Disease will be available for all Canadians. I envision a future where Lyme disease is no big deal, and never allowed to become a chronic, debilitating infection, as has happened to so many. 

The future of Lyme disease and tick borne infections in Canada is at a turning point. Behind us, we have decades of suffering and a lack of knowledge. Ahead of us, global warming and human encroachment of wildlife habitat will lead to an explosion of ticks and Lyme disease outbreaks. 

We’ve got a lot of work to do, and a mission to drive us and hope to keep fighting for. Let’s get started! ~

May is Lyme Disease awareness month, and ticks are in the nymphal stage at the moment, and are very small, and almost impossible to see when they are on your body (or biting you). This is the time to investigate natural bug repellants (I use TickTock‘s tick repellant), to tuck your pants into your socks (I know…so sexy!) and to wear light colored clothing when you’re outside. Stay away from tall grass, keep to the middle of the path, and check your pets, yourself and kids for ticks regularly!
We are going to Ottawa later in the month to speak to as many MP’s (Members of Parliament…like Congressmen, for you Americans) as possible about supporting Elizabeth May’s Lyme Disease Strategy Bill. It’s going to be a very busy few weeks, but I’m excited about this opportunity. Most of my extended family lives in Ontario, so we will be visiting with them too. Yay!

MLA’s

Today was seriously cool! I was invited by two amazingly dedicated, wonderful people, David Cubberly (on Board of Directors of CanLyme) and Lana Popham (Saanich MLA-> Member of the Legislative Assembly), to speak to some MLA’s about Lyme disease. All of them were invited, and about 30-35 showed up, which is saying something as there are only 85 MLA’s total! David brought a copy of a new book about Lyme called “Ending Denial” for each of the MLA’s who came. I spoke to many of them before and after, and I hope that they took away from the meeting a greater knowledge of Lyme disease in general, and from me, its devastating impact. We tried to stress the main issues, about doctors simply not treating Lyme and the ELIZA testing problems. It was pretty sweet to meet those representatives from all those distant BC places; interesting, friendly, well-spoken people…wish I could have talked to them all some more!! If only I had met the dear health minister…I would love to meet him and ask him a few questions! 😀

We also got to listen to question period in the assembly house place, which was very interesting! The last time I was there, in grade 6, I had very little knowledge of government proceedings, what has happening in the province, and little patience for their formalities. Now, I can say that I have definitely improved on the first two points, thanks to all those dull socials lectures and reading the Times on the bus, but I still found it a little difficult to keep up, although question period was certainly heated and very fascinating! Mom and I were introduced to the house by Lana, and then she made a two minute introduction of a bill about Lyme disease, which they were going to discuss later I guess. It was utterly exhausting, but I am so glad I went!

The parliament building’s architecture is always a treat. If you are ever in our beautiful capital, its not to be missed!

The lovely room where we met with the various MLA’s, with such comfy chairs and a lot of old discharged library books on shelves around the room!

Oh yes, there was a piano. I couldn’t help myself.

Below is the speech I gave to the assembled MLA’s. (just imagine my slightly monotone voice, and it will be like you were there too!!) Enjoy!~

Hello! Thank you so incredibly much for coming out to this informal gathering to learn about Lyme disease! (Your curiosity could keep you safer someday). My name is Nicole Bottles, and unfortunately I am sick with Lyme Disease. A little over 2 years ago I was just a typical teenager who loved playing piano and French Horn, singing, chemistry, history, and hiking. I have not been able to attend school since about half way through my grade 10 year. I should be a senior now.

The symptoms started with breathing issues and chest pain, and graduated to vague joint pain, dizziness, nausea, headaches, weakness, and memory and concentration issues. My symptoms progressively became worse and worse, including intense pain, no short-term memory, swollen joints, exhaustion, writing issues, and getting lost or distracted easily. 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. The culprit? A tiny bug the size of a poppyseed, and a hypocritical medical system that left me far behind.

Imagine my dismay, that after seeing 9 specialists, and being tested for everything, doctors still were drawing a blank as to what was causing my strange illness. Even though my mom brought a check-list of Lyme disease symptoms to each doctor, it was quickly discounted. I was ‘too complicated’ to have Lyme disease. They much preferred the misdiagnosis’ of asthma, growing pains, a kind of arthritis, Lupus, an eating disorder, or a deficiency of some kind; anything but the ‘rare’ Lyme Disease. If the doctors had been trained to diagnosed my condition based on the symptoms instead of a flawed test, it would have cost about a $100 for a few weeks of antibiotics, and saved me great suffering. As it stands now, it has been 2 years of horrific pain and over $100,000 in medical bills, all paid out of pocket.

If getting a diagnosis in Canada is hard, it is impossible to get treated. I spent almost a year living in the US, 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 Canadians sick with Lyme Disease now for health agencies, medical professionals and government to believe so.

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  for the medical profession to continue to remain absurdly ignorant of this fact. 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. It begs the question, why is nothing being done? It is time to act. Why are we denied our health care rights? There are thousands of Canadians suffering with Lyme Disease. The ridiculous, ‘old school’ IDSA 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 or misdiagnosed. The ignorant, blind-eyed approach that most doctors have is clearly not working.  Simply put, doctors need to be educated in the clinical signs of lyme disease. Patients need to be diagnosed and we need to be treated in Canada.

    I would please implore you to read the new Canadian book about lyme disease called ‘Ending Denial’ which David Cubberly has so graciously given all of you a copy of today.  And I ask you to dig deeper and find out why Canadians are being denied their right to health care when they have lyme disease. And I ask you to help us to right this wrong. Our suffering should not be in vain. Tell your friends and family the dangers of Lyme disease, and the issues at hand. Knowledge saves lives. Because, honestly, it could have been you sitting in my chair today. I speak out, so that it would not be.

Medically speaking, I am definitely still bumping and banging along on the road to health, but the road back from hell isn’t paved. I still take IV medication daily through the Port-o-catheter in my chest. Unfortunately, I still do not have a diagnosis in Canada to this day.  I do not have a doctor in BC willing to treat me for Lyme Disease, (or for any other illness!). The suggestion alone of ‘lyme disease’ is enough for a physician to bolt from the room. I still have to travel to the US to see my doctors, at huge personal expense.

Everyday is a challenge, but one that I face without a thought of turning back. I know eventually I will get my old life back, and be able to shed the disease, or at least tame it. The thought strengthens me greatly. I just can’t wait!

I leave you with this quote by President Barack Obama:
“Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for. We are the change that we seek.”

Thank you.

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