2016 Lyme disease conference public forum 4 speakers

Conference to develop a federal framework on Lyme disease

May 15-17, 2016, Government of Canada Conference Centre, 111 Sussex Drive, Ottawa, ON

Conference day 1: Sunday May 15, 2016, Rideau Falls room

Audio Recording


Alain: [00:07]

Ladies and gentlemen, with your permission we'll get under way. Good evening. My name is Alain Rabeau. I'm going to be the moderator for this evening's public forum in this area room. And I'll also be one of the facilitators for the conversations over the course of the day tomorrow and on Tuesday as well. I'm going to echo just to remind you the purpose of this evening, picking up from some of our speakers. We want to launch this conference and we want to hear from you, listen to you, of your experience and journey with Lyme disease. That's the purpose for this evening. My challenge for myself this evening is to try to keep us relatively on time. I'm going to ask for your kind collaboration to stick to the five minutes that have been assigned and I'll give you some instructions on how that will happen.

So those of you that will want to speak here at the podium, there are three lights on the podium, a green, a yellow and a red light. If the yellow light comes on, it means you have one minute left and if the red light comes on, it's my request for you to stop. I will also perhaps stand if this malfunctions or if you wish to speak from your seat, which, by all means, please feel free to do so. Then I will simply stand and I will quietly whisper to you, "You have one minute." And that gives you the minute to wrap up. I do this, not-out of a sense of vouloir vous bousculer. I'm sorry, I'm in the French part of my brain. Not to rush you, but really so that we get a chance to hear from the 27 speakers that are assigned for this evening and that we can manage our energies and sustain them, particularly for the conversations that will happen on Monday and on Tuesday. So that's what I'm requesting of you, and I hope I can count on your good cooperation.

Female: Is there a little bit of grace? 20 seconds?

Alain: Well …

Female: A little bit of grace.

Alain: 21 seconds? No more.

Female: Yes.

Female: (Inaudible).

Alain: We had not planned on questions because that would make for a very long evening. So as you are preparing to get up to speak, I'm going to say who's up next. Would you please be ready, so that we can minimize the time in between speakers. That would be very much appreciated on our part.

Female: Will it be recorded if you don't speak in the mic?

Alain: No, you do need to speak into the mic. Okay, that is a really good question. Yeah, you need to speak into the mic so that it becomes part of the record of the conference. Alright?

Female: (Inaudible) remember what number's up and what number's next?

Alain: Because I will be calling it out, alright?

Female: Oh. (Inaudible).

Alain: And Karen Ludwig is up first and followed by Holly Donahoe right after that. So those are our two first speakers. Ladies, you are put on notice. Just quickly for the Francophones, we don't have simultaneous translation, as my colleague Daniel mentioned in the conference room. Testimonies can be given in French, feel free to do so; it is certainly welcome. And as I just explained quickly in English, it would be greatly appreciated if you can stick to the allotted five minutes so that we can still manage the time we have tonight and manage our energy especially for the discussions that will take place tomorrow and Tuesday. Are there any questions before we get underway? Alright. Thank you very much. Our first speaker, Karen Ludwig. Karen?

Karen: [03:40]

Good evening everyone and hello. Thank you for being here tonight and allowing me to also be here tonight. My name is Karen Ludwig and I'm the member of Parliament for New Brunswick Southwest. I'm so thankful to have the opportunity to be the voice for people in New Brunswick who've experienced the effects of Lyme disease. I expect that many of us are here for numerous different reasons. The reason I am here this evening participating in this conference on developing a federal framework for Lyme disease is because Canadians need this to happen. I am not a doctor nor a scientist. My previous career was in education. I want to thank the experts who are here and we look forward to hearing your insights and recommendations throughout the conference.

Here is something I would like to discuss with you tonight. Too many Canadian individuals and families are negatively affected by Lyme disease. I learned this while knocking on doors during the election campaign. I heard something surprising. The number of people suffering or affected by Lyme disease in my riding was astounding. For those of you who are not familiar with New Brunswick, my riding is vast and largely rural. We are bordered by the Bay of Fundy, four federal electoral ridings in New Brunswick and the state of Maine. In fact, many Lyme disease sufferers in New Brunswick, like Bruce Ross, travel to Bangor, Maine with his wife and pay for their own medical assistance, similar to the stories I heard from numerous people across my riding.

Some of my constituents live on islands only accessible by ferry and in one case, the only road to access the island is actually through the United States during the winter. Most people in my riding live in communities of less than 2,000 people. We definitely need to have a strong voice out there supporting people and those suffering from Lyme disease. My point here is to simply say, no matter where a Canadian lives geographically, no matter how remote or rural a community is and no matter the province you live, each and every Canadian deserves the same standard of care and access to diagnoses and treatment for Lyme disease.

My first experience with Lyme disease was at the veterinarian's office. My husband and I brought our yellow Lab Nacho in for a routine visit. And the vet asked if he could randomly screen for Lyme disease. That was in 2007. It has been eight years. With early diagnosis and proper treatment, Nacho is now an old boy of 13. That experience taught me how insidious and dangerous Lyme disease can be. Unfortunately receiving effective early treatment has not been the case for so many Canadians, and certainly for New Brunswickers, as the symptoms may not be present until the disease has progressed and the conflict within our medical communities with the narrow definition of Lyme disease.

The people I met in my riding told me stories of long-term physical suffering, of misdiagnoses, of misunderstanding frustrations. They often expressed how chronic disease has been very draining on their relationships with their families, on employment and job performance, on finances and on the quality of life, in particular. They told me the mental health impact of dealing with a disease that is so varied, complex and personal is almost as debilitating as the disease itself. Being sick and not knowing the reason why must be terrifying. The stress, depression and anxiety resulting from Lyme disease diagnosis, many said is overwhelming. Many people had to create their own community of peer support.

One such organization in Fredericton, New Brunswick, aptly named Tick Talk, has a Facebook page dedicated to information and discussions designed to educate the public about Lyme disease and other tick-borne illnesses while providing support and a sounding board for fellow Lyme sufferers. Representatives from Tick Talk recently met with the New Brunswick provincial health minister. The key point they wanted to express is the serious lack of comprehensive diagnosis and treatment guidelines for Lyme disease. While the federal government has made some website updates and changes with recent resources, the province of New Brunswick, its physicians and Lyme disease sufferers are seeking current knowledge and best practices for diagnosis and treatment.

We do need a federal framework on Lyme disease to certainly help guide our provinces and help bodies. I just want to make sure I get this out before my time is cut. On May 30th, my colleague Mark Gerretsen and I are hosting an all-party, round table for members of Parliament so we can discuss the federal framework and share knowledge. The uptake on that, I will say very reassuringly, has been well around the House of Commons. We will get a lot of interest in it. I know we can make this happen. Thank you so much for being here sharing your stories. Merci beaucoup.

Alain: [08:30]

Thank you very much. Is Ryus St. Pierre in the room? Perfect, you're up next. Holly, go ahead.

Holly: [08:41]

Hello and thank you for joining me and others here tonight. My name is Holly Donohoe. I'm a professor at the University of Florida where my research focuses on outdoor recreation and nature-based tourism and infectious disease. My work related to Lyme and other tick-borne diseases has been published, but it's been inspired by my own journey with Lyme and co-infections. I'm also here representing the Florida Lung Disease Association. You may know them because they created the "Take the Bite out of Lyme" Lyme challenge that went viral last year and this year. So we're doing some pretty good work.

So it's my privilege to share with you a short narrative about my experience with Lyme as well as a few recommendations for going forward with policy, research and public health spending related to Lyme disease in Canada. In 2006, I was unknowingly infected while doing my job, researching and publishing journal articles about nature-based tourism and writing outdoor recreation management plans for the government of Canada. The best diagnostic technicians in the nation's capitol could not make sense of my symptoms, including the bullseye rash and the textbook Lyme symptoms that I was presenting with. At the time, Lyme disease was not in Canada. Doctors weren't looking for it.

In the months and years that followed that missed diagnosis, I developed a long list of health issues that were both baffling and debilitating. In 2010 I left my position at the University of Ottawa and accepted one at the University of Florida. I immediately sought out a family doctor who immediately suspected Lyme disease. I subsequently tested positive. My case was reported to the state of Florida as well as the U.S. Centers for Disease Control. One doctor in Florida, which at the time was not an endemic area, did what many doctors in Canada could not do, and that was give me a diagnosis and start me on treatment. Because my diagnosis was missed for five years, my symptoms are debilitating and severe, and the treatment has been frightening and challenging physically, emotionally and economically.

I have since been treated with over 150 different medications. I have been in and out of the hospital repeatedly. I have been bedbound and housebound for months. I'm unable to drive. I'm unable to care for myself and my family. And I've had multiple surgeries. In the last 18 months the doctors recorded a rapid decline in my cognitive function and the doctors agreed that I should really take some time off work. As a professor, I really need my brain. It's my money maker, and this was devastating. They suggested that I should not go out alone, definitely should not be driving because I'm often confused. I have difficulty communicating and I have memory loss.

Despite a now aggressive line of treatment from one of the best doctors, one of the best Lyme doctors in the world that I have the privilege of seeing, I continue to experience frightening symptoms. In the weeks leading up to this conference, I developed chest pain and I've just been diagnosed with carditis and inflammation of the nerves around my heart. So despite treatment, my infection continues to worsen. It's been a rough road. But I'm grateful that in the United States I was able to obtain a diagnosis and treatment, both which I could not get while I was living in Canada. Ottawa is my hometown. I stand here before you looking well. I look like a professor, having something to say. But hidden from view is a battle that I fight within.

Lyme disease is an invisible disease, but patients can no longer be overlooked. I'm raising my voice on behalf of the millions who have become infected in Canada and the United States. That number might sound high, but you'll find it in my published articles. It's the truth. Check the CDC numbers. In Canada, Lyme patients have been victimized by the infection. They've been victimized by the lack of public awareness. They've been victimized by the lack of reliable diagnostic tools. And they've been victimized by the lack of effective treatment that can be accessed within our national borders.

So I'd like to wrap up by impressing upon all of you and those that are listening and making use of this data that the magnitude of the social and the economic costs of the disease on individuals and on communities and countries and nations are significant and they're cumulative. These costs could be avoided in future, and it's my recommendation that resources be immediately directed into financing research programs, developing a national surveillance program, developing a public awareness campaign and providing support for those living with Lyme. I'd like to thank the conference organizers as well as those who supported the bill through Parliament, the senate, and all of you for listening. Thank you.

Alain: [14:18]

Thank you so much. Ryus St. Pierre. Is Susan Faber in the room? Steven Filiatrault? Okay, next please.

Ryus: [14:32]

Hello. My name is Ryus from Winnipeg, Manitoba. My experience with Lyme disease began in 2008. I had just started working for a mineral exploration company as a field geologist. I spent the majority of tick season completing typical field work but I had no awareness about Lyme disease. When you work outdoors everyday, finding a tick attached to you is a common occurrence. I've removed dozens of ticks from myself over the years and never did a concern cross my mind. In the winter of 2009, I started having pain in my right ankle and knee. The pain worsened and started affecting my back. I did extensive physiotherapy, massage therapy, chiropractic, osteopathy and other treatments with little to no success. My own research brought me to Lyme disease.

In 2010 after much resistance from doctors, I had an ELISA test done and received a negative result. But unaware of the significant limitations of this test at the time, I was convinced I didn't have Lyme. I continued to seek answers for the next four years. I went to multiple neurologists, orthopaedic surgeons and continued treatments as well as multiple visits to emergency rooms because I could barely walk or was in such severe pain I could hardly move. During this time I had over a dozen x-rays, six MRI scans, two CT scans, nerve induction studies as well as countless blood tests. Nothing was found that could explain my symptoms. Unfortunately, not a single medical professional asked me about Lyme disease or even considered or even considering my high-risk profession.

However doctors suggested I might have fibromyalgia and multiple sclerosis, but none of them would actually do anything about it. In 2013 I was diagnosed with celiac disease. A strict gluten-free diet failed to help with my symptoms and they continued to worsen. By 2014 I had severe widespread joint, muscle and nerve pain throughout my body and started having numbness in my face and scalp accompanied with severe headaches that would affect my vision along with vertigo. I tried to sleep with ice packs on my head in a desperate attempt at relief. However I rarely slept due to insomnia. And if I did, it was interrupted or I would wake up soaked in sweat. Midway through 2014 I discovered how faulty the ELISA test was. Lyme was therefore back on my radar.

I found a naturopathic doctor who was familiar with Lyme and shortly after this I had a CDC positive blood result from a U.S. lab. I was referred to a doctor in the U.S. At the time this surprised me and as now I had a diagnosis it should have been easy to get treatment within Canada. So I called Health Links for advice and again they recommended I find a doctor in the U.S. And which was very surprising, because that was my own healthcare system telling me this. I still thought I could get a diagnosis here, so I went to my family doctor's. And I was shocked even more and disappointed to find out he didn't know what Lyme disease was. But he did refer me to an infectious disease doctor. But unfortunately the infectious disease doctor refused to see me without ever speaking to me or asking about my symptoms or history of tick bites.

I had no choice but to seek treatment in the U.S. Within about a month of antibiotic treatment, my severe headaches and vision problems resolved. Several more months and I start having improved sleep and my drenching night sweats were gone and I had some improvements in my widespread pain. In the following months and until now unfortunately, my joint and muscle pain has once again worsened to the point where I've been unable to work for the last six months. Now after years of fighting the medical system, I am now fighting the insurance companies as I have been denied any disability benefits as they say I can't prove I have a disability. When you consider the limited public awareness, limited knowledge about Lyme disease by our physicians, the severe limitations of our current approved testing and the attitudes of doctors denying the presence of Lyme disease in Canada or various provinces as well as doctors refusing to see patients, it's no surprise our current system is failing to diagnose and treat Lyme disease. Thank you.

Alain: [18:50]

Steven, you're up next. Is-I hope I get the name right-Debra Fraleigh? Thank you, you're up next. Steven, please.

Steven: [19:01]

Evening, folks. My story is a little bit different. I come-I'm a diesel mechanic and electrician. I'm a hands-on individual. I work with my hands, I am pragmatic, I look at things in a very methodical way. I am used to looking at things very methodically and very structured. I do not personally suffer from Lyme disease, but I am a caregiver to a close friend, Heather King. She is a nature photographer. She's somebody who spends a lot of time outside. And she was affected by Lyme but without knowing about it. She has - my girlfriend, well at the time, now my close friend, has been affected very deeply by Lyme disease because she is a nature photographer. She is someone who goes outside a lot and who spends a lot of time with animals and who spends a lot of time in areas that are breeding grounds for infection. So I saw the impact it could have from up close. As a caregiver, I saw very closely what this disease has done to somebody. I watched first-hand three straight years of varied medical tests, various missed diagnoses.

And I watched a person's health, from my two eyes, slowly decline to the point where she wound up in a wheelchair. Restricted mobility, trouble walking, trouble with balance. I saw a person's health decline gradually over three years, starting as a totally normal person, seeing a person losing balance, losing mobility, losing mental health and balance and the use of muscles until ending up in a wheelchair. And to see doctors who have no answer, to see doctor after doctor run out of answers, run out of things to say, run out of options for testing. To see, to miss opportunities to - of tests to perform, having no diagnosis, having no way to talk to a patient. Lacking respect for a patient. I've seen doctors treat patients with a complete lack of respect. These are things that are inhumane for an individual to suffer. These things are inhuman for an individual to suffer. I saw afterwards for example, another approach. I saw afterwards a new approach. I saw gradually, by whittling down, okay, by whittling down physician after physician. Sooner or later we find people that care and we find people willing to work as a team, okay.

We find dentists. We find chiropractors. We find naturopaths. We find alternative medicine doctors, people who are not - who go beyond individual medicine, okay? Who go outside of their profession. Dentists, chiropractors, naturopaths, osteopaths, people who want to work as a team. If you have the patience to go through all the doctors who do not necessarily want to go outside of their profession, take the time and you'll build yourself a team that will do what you need. Take the time to go through a team that will work for you, work on your symptoms, work with you, so that you can get to where she is today. Lâchez pas prise. Your emotional support, the things you do for these people are what matter most. The little things, keeping their morale up. The little things, the smallest things you will do: cutting a fruit, the nonsense that you think contributes to nothing. Keep their morale high, keep supporting your brother or sister, keep their spirit alive, because you are making a difference. You make the difference in these people's lives. Caregivers, this is as much your disease as the people you live with. The support system is critical. Le réseau de soutien est critique. Thank you for your attention.

Alain: [24:10]

Thank you Mr. Filiatrault. Mrs. Fraleigh, Michelle Gagnon is up next.

Debra: [24:31]

My name is Debra Fraleigh. I'm a late-stage Lyme patient and co-founder of the Ontario Lyme Alliance. I believe that I was infected with Lyme disease in the fall of 2009 or spring 2010 while traveling in Europe or while caring for a horse that I regularly brought in from the high grassy fields in the Rouge Valley and often rode along and through the Rouge River. Like most Lyme patients, I suffered from a myriad of systemic symptoms. Despite all of them, including encephalomyelitis, which had been diagnosed in Ontario as transverse myelitis and for which testing for Lyme disease was highly recommended in the medical literature.

I was not able to access testing for Lyme for almost two years in Canada even though I repeatedly asked many doctors I saw to be tested. By the time my family doctor did order Ontario Lyme serology, but no test for European Lyme, I tested non-reactive to the (inaudible) ELISA used at the time. Not long after, I learned my efforts to get proper testing were all for naught. By then I had become immune-compromised. And a protein electrophoresis test showed lower than normal levels of immunoglobulins needed to actually create antibodies. This is an under-researched aspect of Lyme disease. We know that it does cause dysfunction. We know that it causes compromise. Research is only yet beginning and it has a long way to go.

My family doctor at that point and two other physicians then tried very hard to refer me to a specialist. I was turned down for a referral and proper assessment by six Ontario infectious diseases doctors. Two of them had been contacted by telephone and had verbally agreed to see me. But then after seeing my files, the receptionist, even when asked weekly, took two months to report back that those doctors had changed their minds, much to the dismay and the frustration of the referring doctors. My family doctor and my neurologist both finally gave up and told me to seek a knowledgeable doctor in the United States. As a Lyme patient in Ontario, I feel and I have been, medically abandoned.

I became very aware that in part, I was turned down for these referrals due to controversy associated with Lyme. Physicians were fearful of having to endure disruptive and harassing investigations into their practice if they took on a case requiring clinical judgement or if the patient might require a treatment protocol that differed from the IDSA guidelines. I learned that one of the doctors who rejected my referral had been issued a written caution regarding his treatment of Lyme disease by the College of Physicians and Surgeons of Ontario, which seemed to be very common knowledge among the infectious disease community. I eventually found out that that doctor launched an appeal of the CPSO decision. What is not well-known is that this doctor won his appeal.

The review committee decided that all but one of the CPSO cautions were unreasonable and required the CPSO to amend its original decision to a single warning regarding lack of timely reporting to the patient's family physician. The full details of this case, HBVSG 2013, are a matter of public record available through the Canadian Legal Information Institute website. There's something seriously morally and ethically wrong when doctors simply refuse to assess or care for patients with complex illness to avoid controversy or personal discomfort. The HB-the outcome of HBSG case should be a lesson that doctors should not feel constrained in using physician judgement when determining appropriate treatment, even when it needs to diverge from IDSA recommendations.

As long as doctors document the treatment, the rationale for it, that they've appropriately advised the patient of the risks and obtained informed consent, the obligations when treating Lyme disease are no different than would be necessary for any other disease. As an Ontario Lyme Alliance member, it appears to me that the Ministry of Health officials and public health professionals have been deferring necessary changes to the information being disseminated to both physicians and the public while anticipating publication of the new IDSA Lyme guidelines. In January, given the long time that had passed without publication of the promised summary response to the public comment period, I wrote to Ms. Jennifer Padberg, vice president of Standards and Practice Guidelines at the IDSA to ask for a timeline for the new Lyme guidelines to be completed.

She responded, "Because guideline development is a thorough and rigorous process, it requires significant time and can take anywhere from two to five years." I would like to enter a copy of that correspondence into the record, maintaining the status quo while waiting for up to five years for the new IDSA guidelines to be published before updating and improving Lyme disease education to reflect current scientific findings will only ensure that more people will be infected with Lyme and patients will continue to be medically mismanaged. On a personal note, I credit my ability to be here tonight to the treatment that I continue to receive from my physician in the United States. For me, this has been a very long and hard journey. And while I have certainly improved, this journey is not over yet. Thank you. Can I leave this correspondence with you?

Alain: You may do that, yeah.

Debra: Okay.

Alain: Just leave it right here.

Debra: Perfect. Thank you.

Alain: [30:39]

Thank you very much. Michelle Gagnon. Marguerite Glazer, are you in the room? You're up next. Madame.

Michelle: [30:47]

I'm a mountain enthusiast and Lyme warrior. Lyme is an invisible illness that it needs to be diagnosed and treated properly. 28 years ago I had a bullseye rash on my arm that I got in Banff and the doctors told me it was ringworm. Months later I lost the sensation in my whole lower arm for three months. I made a list of all my crazy symptoms over a few months and showed the doctor. According to the doctor there was nothing wrong. Blood test was always normal and I looked strong. I knew something was seriously wrong and someday I would have to figure it out. In the 1990s, I was mountain bike racing and an athlete on the National Development Freestyle Ski team for (inaudible).

I had many injuries and thought the pains, joint aches and muscular tensions that pulled my body out of alignment were all related to my injuries. I couldn't perform during competitions. I almost always crashed as my legs would not bend properly. In training I rarely fell. During (inaudible) exams, I always got sick or just didn't feel right. It affected my ability to communicate my thoughts and had poor memory recall, one second there, one second gone. And variable performance due to muscles seizing up. For years I kept trying to figure out all my aches and pains and chronic tightness regardless of how much I stretched. The pain was indescribable and doctors told me I would have to live with it. I was desperate to ease the pain and kept researching, "Please anybody, help."

I saw many practitioners to address my muscle tension and alignment issues. Everything helped but it always came back. I learned that Lyme is an opportunist. It takes advantage of any form of stress and migrates into old injuries. Symptoms always change, sometimes by the minute, day, week, month or year. Trying to figure out my health always had me puzzled and searching for answers. I tried all sorts of cleanses, started taking more vitamins and eating more healthy to get my sporadically vanishing energy back. Everything helped, but I needed to get to the route of the problem. One day my chiropractor told me, "I think you have a systemic illness. You have chronic muscle tension that pulls everything out of alignment. You respond well to treatment. But two days later you're back to square one."

He was the only person that believed there was something wrong. I then went gluten-free and thought I had it figured. In 2008 during my fifth season of working as a hiking guide, I felt zapped of all my energy. I was too tired to do my usual rock climbing or biking after work or on days off. I was barely hanging on. A few months later I deteriorated quickly and thought I was dying. Every time I stood up, I thought I was going to pass out. I spent months on a couch, sometimes too tired to read or watch TV. Symptoms always changed. I had swollen lymph nodes, sore throat, a level of exhaustion I didn't know existed. Eye pain, focusing issues, extreme muscle tension, bone and joint pain, shooting pains, muscle twitching, rib pain, chest pains, palpitations, shortness of breath, nausea, carpel tunnel, tendonitis, Bell's palsy, food allergies, chemical sensitivities, tremors, chills, drenching night sweats, randomly sore foot, dry and bloodshot eyes, dental issues, acne, poor memory, low body temperature. The list could go on and on.

I'd been always mentally strong but something was eating my spirit. My balance deteriorated and I could no longer do the balance yoga moves I used to do with ease. I went to the doctor to get my lab results back. All the blood tests were mostly normal. She told me it's all in my head and I need to see a psychologist. It's a beautiful sunny 30-degree day out there. Do you think I want to be inside barely moving off the couch? I went to a Chinese medicine doctor that kept me going. But the mystery illness was still there. Six months later somebody told me I probably have Lyme disease. Thanks to all the Lyme sufferers who helped diagnose. Somebody has to do it. I tested positive for Lyme on the Western Blot IgG through Igenex in California. None of my co-infections were positive. This was the start of my healing.

I started taking doxycycline. After three months another sufferer asked me, "What else are you taking to treat all forms of the Lyme bacteria? What about co-infections? I'm seriously concerned about you." This is when I realized it was all up to my own research to get me through this. I must admit, I even questioned whether I needed more treatment as I thought I felt okay at the time after three months of treatment. I was far from okay and didn't realize how sick I was until I started receiving real treatment addressing all forms of the bacteria, biofilms and co-infections. I started seeing a Lyme-literate doctor in the U.S. He clinically diagnosed me with Lyme, Bartonella and Babesia. For six years, I was on a mix of antibiotics and herbs.

I spent my time researching and trying to figure out how to get rid of this horrible disease that is not diagnosed or recognized in Canada. I went to a functional medicine doctor and had many tests done. Lyme depleted me of vital nutrients, minerals, amino acids, hormones and created cellular issues. I tried to stop antibiotics a few different times. Dental and face symptoms returned. I did more research. My immune system wasn't working. All my immunoglobulins were below normal. I received IVIg and my immune system finally started working. Our universal healthcare system failed me. I was one of the lucky ones as my partner Martin supported me and paid for my treatments.

Other than political reasons, if we aren't being treated because of how costly it could be, then you need to think about all the doctors' visits, hospital visits, specialists, fertility docs, blood tests, x-rays, MRIs, ECGs, Holter monitors and ultrasounds I've had over the last 28 years that have shown absolutely nothing. If my bullseye rash was treated immediately a lot of money would be saved, there would be no pain and suffering, alienation due to a disease that is not recognized, unproductivity and maybe I would have a child. Wherever you get Lyme from doesn't matter. Tick maps don't matter. It's scattered all over the globe. Our universal healthcare system needs education and doctors need to be able to treat and diagnose regardless of where or how it was transmitted. People need help and they need it now.

Alain: [36:32]

Thank you, Michelle. Marguerite Glazer. Is Cecile Gough in the room? Okay.

Marguerite: [36:43]

My name is Margerite Glazer. I'm from Montreal and I'm a Lyme survivor. My health nightmare began 15 years ago when I was 19 years old. Suddenly I started feeling sick every single day. I remember at first naively thinking, "I'll go to the doctor and the doctor will help get me well." But in the span of twelve years, I saw over 30 doctors, generalists and specialists of all sorts who all very quickly dismissed me with complete bogus diagnoses. Slowly but surely my symptoms worsened. They multiplied, affecting my entire body, making me increasingly incapacitated, unable to work, get out of the house or out of bed much, take care of my basic needs. Extremely ill and repeatedly told there was nothing actually wrong with me, I considered suicide on numerous occasions.

I felt like I was dying on the inside and I had nowhere to turn. After years of pain, exhaustion, relentless research, I finally saw a doctor who's knowledgeable about chronic illnesses who not only took my symptoms seriously but did proper testing and diagnosed me with Lyme disease. For the record, I tested unequivocally CDC positive. With a mix of long-term antibiotics and other complimentary methods, I gained my life back within a year and felt better than in my entire adult life. After being diagnosed with Lyme disease, I became involved in the Lyme community in Quebec only to realize the extent of this devastating systemic issue. Today I am representing all Quebecers living with this illness that prevents them from living and for which they have no help in the province. Denial of the scale of the problem, no medical support, no financial or government assistance and collapsing health. It is total neglect. We're talking about hundreds or even thousands of lives affected and the number of infections is increasing at an astronomical pace. The situation is absurd and is only getting worse. The problem is endemic and patients have long understood that it is not from their doctor that they'll get help.

Lyme sufferers desperately want to get to the root cause of their issues. Sadly, we are faced with MDs who show great contempt towards chronic ill patients, showing savage disregard for our suffering. We are told to stop worrying, to stop looking into potential solutions and just accept that our problems are not real, that they're psychosomatic, of unknown origin. They label us with numerous misdiagnoses and of course, push for us to take inappropriate medication. Patients are ridiculed and insulted. They are called attention-seeking hypochondriacs. They are told they have OCD because they focus so much on their health and their symptoms. They are told that depression causes their seizures, that their anxiety causes their vision problems and that overall they're just lazy people who don't want to deal with life.

It is staggering how often we hear this nonsense being told to patients. On what evidence are these doctors basing their diagnoses? In a world of evidence-based medicine, it appears that doctors and specifically infectious disease doctors, are often relying on their own magical thinking when it comes to Lyme patients. They freely throw around terms like placebo and psychosomatic, unwilling or maybe simply unable to do their actual job properly. We are taken for fools, seen as gullible people drawn to quacky diagnoses of Chronic Lyme disease that we stumbled upon on the Internet. I have spoken to hundreds of Lyme patients and let me be clear. Nobody, absolutely nobody wants to be part of this club. We fight strong and stick together because we have to for survival. When the medical system is against you, then much of society follows. And the isolation of the Lyme predicament is truly a gut-wrenching and horribly difficult human experience.

We fight because we don't want anyone else to go through what we've been through. We fight so that others know that it can get better, that with the right help they can recover, that there is hope. We fight so that people know about Lyme disease and related infections, so they know how widespread they are. Medical arrogance, a profound disconnect from the reality of chronic illness and over-reliance on outdated and flawed science and testing, those are the real disease du jour. Most doctors would rather believe that thousands are having the same mental and physical delusions than to question the mantras they've been taught to repeat. The rare compassionate doctors who are up to date with their scientific knowledge and who truly care about helping their patients heal are prosecuted by the medical police.

It seems that we've gotten seriously off track when it comes to our healthcare. And let's not forget that the primary goal of medicine is to make people well. We should all be concerned first and foremost by the reality of the Canadian Lyme disease patients. The present medical system in Canada is relying on outdated and flawed information masqueraded as science, causing thousands undue suffering. We need to do better because the current standards are failing us miserably. And we need to do it now. Lyme patients and enlightened doctors have so much to teach. It's up to everyone to listen. Being sick is not a crime. I hope this conference helps put a stop to the war that is being waged on Lyme disease patients.

Alain: [42:15]

Thank you, Margerite. Cecile Gough. Carolyn Harris-okay, thank you. Cecile.

Cecile: [42:25]

My name is Cecile Gough. I'm an oncology nurse. I'm an advocate and an educator. I'm a founder of the Guelph Lyme Disease Support Group and the Lyme Symposium, which is the first patient-focused conference of its kind in Canada. It will launch in October 2016 and tour Canada in 2017. And I have had Lyme disease for 25 years. I was finally diagnosed in October 2014 by a lab in California. And prior to that, even though I've been a nurse for almost 20 years, all I knew about Lyme disease was that you get bit by a tick-I'm from Newfoundland, we don't have those there-and that it sucked. That's pretty much all I knew about Lyme disease. And boy, it's been a steep learning curve in the last 18 months. And there are two specific areas I have been working politically to address. And I'd like to read to you an excerpt from a letter that's recently been sent out to MPP Mike Mantha, MPP Liz Sandals and my MP, Lloyd Longfield in Guelph, Ontario.

"I have two issues that I'm working on. One is for the reasonable and responsible access to care and treatment. To date, Lyme patients in Canada have not received any funding from the Long-Term Care Ministry of Health Out of Country Prior Approval Program. I have not been able to apply because I have not been able to secure a signature of a physician as outlined in the form. The out of country application is based on the Provincial Health Insurance Act, and it states that a signature of a doctor in Ontario who specializes in the illness is required. And I feel-whoops. I have asked five specialists who are involved in my care to sign the application and all have refused. I have been refused assessment by two infectious disease doctors.

I waited 14 months to finally see one at McMaster in Hamilton and she refused to sign the out of country prior approval form and she also refused to accept my lab results from California confirming my diagnosis of Lyme. And she also refused to accept a letter that was written especially for her from my Lyme specialist, a doctor in Albany, New York. And he also provided research documents. She did not accept those either." And I have all of this in writing as evidence. I am a nurse and I am from Newfoundland and I cover my tracks. That's not in the letter, but my MP knows that. I told him in 2016, reminded him that I am from Newfoundland, I've a very strong constitution and I told him my motto for 2016 is that I'm going to be a growing concern. And he remembered it when I met up with him two months later.

Back to the letter. "I feel that this out of country application form and the Health Insurance Act that it's based on, it is discriminatory to Lyme patients in Canada. And discrimination is a pretty harsh word, but it's discrimination and it's negligence and it's directly against our human rights to the access of appropriate treatment in Canada. It is our right as a patient. To date, I have spent $140,000 of my own money out of pocket for healthcare and I've exhausted my life savings. With the passing of Bill C442, Health Canada now recognizes that our current guidelines for treating and assessing Lyme disease are flawed, and that Lyme disease is not appropriately treated or managed in this country. I'm pleased to be attending this conference. I believe it is a significant first step in creating the necessary framework for dealing with this issue. But Lyme patients need help now.

I believe-the second issue is I believe I contracted Lyme disease 25 years ago when I trained with the British Army in Thetford Forest in England, an area now known to be endemic for Lyme disease in the U.K. I grew up in the Army Cadets from the age of 13 and I served as a second lieutenant in the CIC. I've trained all across Canada and I've been in many high-risk areas. When I spoke with the National Cadet Organization last year, I was told by the assistant of the lieutenant commander that the timeline exceeds the statute of limitations, that I would have to sue the Crown. I told them that was unacceptable, especially given as I was a minor.

As an advocate I have received more than 200 letters from people all across Canada in the past eight months who are seeking help and resources for Lyme disease in this country. I've also heard from three men, two who are brothers, who have contracted Lyme while in the military and have not received assistance or support from DND or Veteran Affairs. What I'm asking for? I'm asking that provincial and federal ministries of health anticipate the changes likely to emerge from this conference and proactively and as soon as possible amend the respective Health Insurance Acts in all provinces to facilitate the speedy and necessary treatment and assessment of Lyme disease so that thousands of us don't have to go across the border.

And I'm also asking for support and compensation for our members in service, whether that's the Reg Force, the Reserves or people who are in the Army Cadets. And I ask for appropriate prevention and prevention programs to be taught." So I'm really hoping that this will happen. And the one question I keep asking over and over is this: I'm an oncology nurse and I know that no cancer patient in Canada would be denied access to chemotherapy and treatment. I have late-stage Lyme disease. Why am I not worthy? So please help, Canada. Find a way to help us out.

Alain: [48:27] Carolyn. Is Maria Hillier in the room? Maria Hillier? Okay, you're up next. Okay? Carolyn, please.

Carolyn: [48:41]

Hello. My name is Carolyn and I live here in Ottawa. I've been living with chronic Lyme disease and co-infections for the past nine years or so. I don't know when or where I got infected, but I started to get sick around when I was in 6th grade. I had rashes, frequent colds and flus and other symptoms. Over the next several years, I developed more and more symptoms of increasing severity, like severe fatigue, difficulty thinking, anxiety, digestive problems and more. I went from doctor to doctor but I was either given a misdiagnosis or treated dismissively or told it was all in my head. As my illness got worse without getting any medical help, I had to stop attending school regularly, playing sports, writing and doing many other things that I loved to do.

About six and a half years after my illness began, I was finally tested for Lyme disease for the first time. The test that they used was the ELISA test, which I have heard has a less than 50% accuracy rate. The test came back negative. Later that year, my mom learned more about Lyme disease and how the testing can be inaccurate. So we decided to get me tested for it using the Igenex Labs in the United States. This time I tested positive. It was only then, after I had been ill for seven years that I finally got diagnosed with chronic Lyme disease. The longer that a person has chronic Lyme disease, the more difficult it is to treat. That is the case with me. I've been sick for such a long time that treatment is very difficult.

If I had been diagnosed with Lyme disease and co-infections when I first got sick, I would probably be healthy today. I would be studying at university and I would be involved in sports, animal rights, activism and writing. Instead my health is getting worse. I have to deal with severe symptoms like fatigue and difficulty thinking daily. And I am still unable to go to school or work. I have seen many doctors even since I have been diagnosed with Lyme disease and many of them have told me that they simply don't know enough about Lyme disease to be able to treat me. And one of them even told me that chronic Lyme disease doesn't even exist. It is so important for mainstream medical doctors to learn how to recognize, diagnose and treat chronic Lyme disease and co-infections as soon as possible for each patient. Please develop a strategy to make this happen. Thank you for listening to my story.

Alain: [51:26]

Is Elaine Husband with us this evening? Elaine Husband? Emily Jamieson? Okay, we'll have you afterwards please. Maria.

Maria: [51:43]

Good evening everyone. First of all, I'd like to thank you for having me here and inviting me to speak tonight. I would also like to thank my husband, children, doctors, Tom and Angela, and my mentor. My name is Maria Hillier and I have chronic Lyme disease. I have been battling it for over five years. I would like to rewind the clock to 2011. This is when my story really began. It was a beautiful summer day and we were spending the day at a pool party and barbecue in an upscale subdivision in Leamington Ontario. No bush, no long grass, no weeds and one tree in the backyard. As the day got quite hot we moved our chairs under a tree for the shade. I can recall the birds were singing and a couple of squirrels were playing in the tree.

The next thing I noticed that there was a small dark bug on my arm. I went to brush it off but it wouldn't move. I then went into the house and I got a needle and some tweezers and I began to try and remove it. I managed to get some of it out but not all. The next day I had continued, got the rest of it out. For me, this was just the beginning. Within months I became terribly ill and like everyone else, I could barely get out of bed. Chronic fatigue. Going on and on and on from doctor and doctor and doctor. Over the next year I was sent for several unnecessary tests such as MRIs, CAT scans, x-rays, ultrasounds, bone scans. I was given several diagnosis such as MS, fibromyalgia. I had many doctors roll their eyes at me. I was also told to seek professional help.

I did a little bit of research on MS because that was one of my diagnosis. Do you know that Canada has the highest rate in the world? It shares all the symptoms of Lyme disease. It is also degenerative and autoimmune condition. The U.S. had posted on their MS website this information, and many people that had MS or were diagnosed with it then got retested, Igenex, and tested positive for Lyme. As my condition began to worsen and worsen, I started missing many days at work and social activities. In 2013, a friend and co-worker happened to notice my symptoms. He asked me to get some blood work done at a lab and send it away to California as I tested negative in Canada. He was certain it was Lyme disease, by his journey. He was very educated because he had it years prior.

I did it and I then tested positive for it. Due to the fact that some of us have tested positive in the U.S., we don't count in Canada. We're not on Canada's list. That's unfair. As time went on, I spent almost a year in my house, most days not getting out of bed, no social life, nothing. I was in excruciating pain. My ears rang constantly, my vision blurry and I had a lot of neurological problems. I also lost almost 40 pounds. I got to the point that I wished I could just go to sleep and not wake up. But my husband and my family is what kept me going. I was never ever able to return back to my job after these three years of dealing with Lyme. I finally retired from work last month after being an employee there for over 20 years.

Losing my income was a large burden. All my treatments, everything, my blood work, is not covered here in Canada. We have spent thousands. As of today, I feel Lyme disease will be a national crisis, just like AIDS and hepatitis. Canada needs to move forward and get improved testing done here. There's a simple urine test available in the States but not in Canada. Nanotrap is the name of it. It can provide at any point during the infection and during and after the course of treatment and will tell you if you have Lyme disease. It takes minutes to do and it's 99% accurate. But we as Canadians cannot get it. Why is it not available to Canadians? Better yet, what about a vaccine? Lymerix along with Dr. Steere came out with one in '98. It was taken off the market in 2002. Too many people said they got arthritis and it got blown out of proportion.

My dog is able to get a vaccine for Lyme disease. Why can't we? They have much better testing for our dogs. I just would like to make everybody aware of this because if I would have known and been literate on this when it happened, I wouldn't be where I am today. Last week my grandson in JK went for a nature walk at the school, the four-year-olds and five-year-olds. I have a letter here that was sent home from the school. Within two minutes, the children and the staff were covered in ticks. Covered. And here is the letter to prove it. I won't bore you with it. I won't carry on to read it, but it is true. Maybe too late for me but it's not too late for our children, our grandchildren and the younger generation. Thank you for giving me this opportunity to speak here tonight. Thank you.

Alain: [57:52]

Emily. And is Nina Jason in the room? Nina, you're next. Emily.

Emily: [57:58]

Thank you. My iPad's playing tricks on me. Hello everyone. Thank you for letting me tell my story to you today. My name's Emily Jamieson. I'm 32 years old and I live in Ottawa. I'm married to a supportive husband. I have a goofy dog, loving family, friends and a career. I'm sorry, this is a little emotional. I love being active, going outdoors, being healthy, and I'm just like many of you in this room. Over two years ago, my life completely changed. I had this bump on my neck for about a month or so, and I didn't really think much of it. I had no knowledge or awareness-thank you-of what it could be. That being Lyme. I'd been hiking that fall in the Gatineaus, like many people in Ottawa do. And I also enjoyed my cottage frequently. Now I can't say for certain if I had a tick bite or not. And I can't tell you that I didn't. But what I do know is that from that I got very sick.

About two months later, after dinner one night, my first instance started. My legs and face went completely numb and I had the worst headache that I've ever had. My heart was racing. I was very scared and I went to the emergency room here at the Ottawa General Hospital. That was my first of many trips to the ER. After a long wait, doctors thought maybe I had had a stroke and-but my symptoms were not normal. My numbness was jumping around my body. I had flu-like symptoms, an irregular heartbeat and a really sore jaw. Just really didn't make very much sense. They sent me home that night. And they said nothing was wrong. I thought I was dying and I stayed up most of the night because I just didn't know if I was actually going to wake up. That is one of the scariest feelings that you can have, not knowing what you have. And I went through that for not as long as many of you, but it was about four or five months.

From there I went to see many Canadian doctors, none of whom really thought or knew much about Lyme disease. I saw a cardiologist, neurologist, extensive GPs, all those doctors at the ER. They all sent me home. I often think that if I'd actually talked to a Lyme-literate doctor at that time, I would not have any symptoms today. My GP diagnosed me for the first time with anxiety and depression. I was then put on anti-depressants. These of course did nothing. He tried another kind but it actually gave me worse anxiety to the point where I had to walk down the street with my hands over my ears. He kept thinking that I was depressed and I kept telling him I wasn't. I was actually quite happy. I love my life, my dog, we got a new house. Everything was going well. But things just kept getting worse. New symptoms started to appear. I had lung pain, twitching, neck soreness, vertigo, and then finally the icing on the cake for me was extreme bone pain.

And this made it very difficult to walk and it made it hard to work, to be social. And I was confined to my home and much of the time, my bed. This was only four months in, and I know a lot of you have gone through a lot more, but that was-it was hell. I actually stopped believing what my doctor was telling me and maybe this was kind of the best thing that ever happened to me. I started doing research on my own and I could go into details about that but for the sake of the fact that I have five minutes, I'll skip ahead. I asked my Canadian GP for a blood test and simultaneously I sought out other opinions through my naturopathic doctor. I got her to send my blood work to Igenex, which we've heard a lot about tonight. Obviously it came back negative in Canada and positive in the States. My Canadian GP at the time didn't know what to think of the results and he was very hesitant to put me on antibiotics. I gave up on our system and I went to a doctor in the U.S. who prescribed me antibiotics.

This cost me thousands of dollars, like many of you, and it made it very hard to make ends meet. I hurt and I was often bedridden. But within a month or so, a lot of my symptoms started to dissipate. My bone pain was gone, my sore jaw was gone, my neck pain was gone. After about seven months on antibiotics, I decided to call it quits with antibiotics and I still have symptoms. But I need to give my body a break. I went on herbal anti-microbial drops and for those of you in the room that know the cabin protocol, that is what I went on and that is what I continue to be on. I ordered this from the U.S. and I go through the border and I pay tax and duty on all those things that I actually purchase from the States. We can't find that here. And the border guards know everybody that goes up and down through the States. They know who my doctor is in the States. Financially, like many other Lyme patients, I've spent thousands of dollars on treatments outside and inside of Canada.

It's frustrating that I have to pay these duty taxes when I'm so broke. I do have a good job now, thank God, or else I wouldn't be able to afford this. I don't know-people that do not have jobs or any financial backing, I don't know how they do it, because it really costs-it's, like, an expensive disease. I could go on but my light's orange. So what I leave you with today is what I know is that the system in Canada failed me. It continues to fail me. I cannot talk to a doctor in Canada that's truly knowledgeable about Lyme. I hear rumours of doctors that have Lyme knowledge but in Canada they are fearful of being shut down or put under a microscope. Other doctors simply follow a simple book or guideline that is outdated, costing people their jobs, family and lives. My hope is that this conference brings positive actions and not just words. I hope my story remains a story of the past and not one of the future. Thanks.

Alain: [01:03:41]

Is Linda Kilgallen(?) in the room? Alright.

Female: I hope you have more tissue.

Alain: Nina? Yes, thank you for supplying those.

Nina: [01:03:49]

Thanks. Good evening. My name is Nina Jason. I'm a late-stage Lyme sufferer. I was bitten in 2006, the summer of. And I spent a lot of time outdoors enjoying all the flora and fauna, including endemic populations of ticks carrying Lyme disease. My first bite was at a music camp, just north of Montreal at Lake McDonald. That's in Canada. And I was told many times that I couldn't possibly have Lyme disease. "You wouldn't have gotten it from a place in Canada." Anyway so I was covered in bug bites. I came home with flu-like symptoms. I had that urgency to urinate, meaning that it had actually migrated into my bladder. And upon my arrival home I headed straight to the GP. GP-at the time in 2006, West Nile was the big thing. Lyme disease was unheard of. So UTI came back clean, no explanation for what was going on. Things settled down.

I was given the green light to go on a vacation with my young family. And we went to the Massachusetts-Connecticut border to a museum of flora and outdoor fauna. And guess what? Got another bug bite. So there were a lot of signs saying that, you know, you have to be careful and heed warning. But I'm Canadian. I didn't have any idea about this stuff. Unfortunately when we got into the car, my husband reached into his shorts thinking something was bothering him and there it was, a tick. I'm, like, "Hey that's what they were talking about. Let me see that." Squished it in my fingers, put it away. Mused about it, "Hey maybe we should get this tested." But anyway. Nothing happened. Four days later, we arrived at where our destination was and I couldn't get off the couch. I couldn't move my head to the left or the right. It felt like someone had beaten my feet with sticks and that I had lived on my feet for my whole life. It was-I started to get electrical activity flying up my foot-from my foot up my legs. I had pain in the bellies of my muscles.

They started to undulate, the muscles were undulating like a wave. It became neurological so quickly. So I turned to my husband and my big mistake was-we were in the States. I should have gone to a doctor in the States. They would have known what my problem was. But no, I headed back to Canada to my GP of 15 years who knew me well. And he'd be able to help me. Well I went to him and I had no idea. I thought I had Lou Gehrig's disease because I had been doing some research online. Anyways, he tried to reassure me that it was probably nothing. But he sent me to the neurologist. Neurologist said that if he were to think of all the twitching happening in his body that that'd make him crazy. I'm, like, "Look, I'm not-I don't think I have mental issues, but find me a psychiatrist. I need to get this out of my head."

I have four children. They're counting on me. Their age range was between five and nine years of age. They needed their mother. I was a speech pathologist with a growing practice. I was a teacher full-time. People depended on me. I couldn't be sick. Anyways, I was sent to an internist. The internist, he tried to do what he could. My GP-I had done research online. I said, "Hey let's get this Igenex testing." Brought one up. He's, like, "No, you're going to have to get another doctor to do that." So I went and got another doctor. When I came back with the results, which were very positive including Babesia FISH and Bartonella, and a few little couple of co-infections to go along with Lyme. I showed the results to the doctor and he scolded me. He said to me, "You went ahead and had this done?" I'm, like, "You told me to get another doctor." Well, in the Lymey world, I was fired, right? I was sent packing. Anyways, what happens after that, it's just a long list of problems, joint pain, areas that you can't-you can't explain what's going on. And when would something declare itself at this point?

Well I found a doc in Toronto. And he identified Lyme almost immediately, clinically. And he said, "You know what? Let's get you on a PICC line." Four months later, my ELISA, after having had ten times the ELISA in Canada, finally came back positive. February, I got a call from the Public Health saying, "Guess what? You have Lyme disease." I'm, like, "Really?" And I said, "Okay." So they were interested at that point. "Where were you? What did you do?" When I mentioned the various places I had been, they're, like, "Ah, the U.S. That's where you got it." Anyways, seeing my red light here. We need a national strategy. We need doctors to be supported, not scrutinized. People need to back off. Let the doctors in Canada do their thing. Don't force them to the United States to practice. We have a Montreal doctor who can help us, and she practices in Plattsburg, New York. We need some help here, and I'm really, very grateful that this inaugural meeting is happening because I have hope. Thank you.

Alain: [01:09:23]

Thank you, Nina. Is Heather King in the room? Alright.

Linda: [01:09:34]

Oh there is a time limit on there? Ok, good. Hi everybody. I'm Linda Kilgallen. I also would like to thank everybody for giving me the opportunity to be here and for listening to what we have to say. I'm here because I feel that my life was stolen from me, and it was stolen from a disease that I didn't even know existed, a disease that I didn't even know I could or should protect myself from. It's so unfair. I was misdiagnosed, like almost all of you. I was consequently given the wrong treatments, which sent me very quickly downhill. Prior to getting sick, completely unaware that Lyme disease even existed. I thought if a tick got in you, the problem was it got stuck. So you had to rip it out. My third bite had a problem for me. I had been very active. I work anywhere from twelve to 14-hour shifts in construction. I spend every hour on my feet outside when I'm working.

When I'm done work, I come home and work in one of the many gardens on a ten-acre property that I take care of. Never knew I had to protect myself. When I'm not doing that, I'm a Girl Guide leader with Pathfinders Girl Guide Canada. I take care of girls that are 14 to 17 years old and I take them camping. We played a game called night tag. It's basically the opposite of hide and seek. So there's 15 of us. One goes and hides in the bush. It's called night tag because we don't play until dark. That girl crawls into a bush and hides. And she waits until one by one we all find her. When you find her, you don't pull her out of the bush. You crawl in with her. And you sit there in the dark in that bush and you wait for the rest of the team to find you. When they've all found you, yay! We start again. Now for obvious reasons, you can imagine-never mind that I didn't know about Lyme, that I had to protect them from this.

I can't search your child. She's a twelve-year-old girl. How do I look at her for a tick, in the dark nonetheless? We're not protecting them, and it's unacceptable. I can't even imagine the number of thousands of girls that we take camping every year and we crawl through the bush with them. We thought our biggest fear was spiders. Maybe mosquitoes, because they make us itch, right? Our first meeting-first of fourth meeting every year in Girl Guides in my unit, because I was known as the camping unit. We had girls come from other areas to join me because I was the camping guru. One of those meetings in the first month is always with a nurse, because I believe in safety, preventive. Take care of them. That nurse covers every hazard that can happen to you at camp, anything from sunstroke, fatigue, burns, everything. Never heard of a tick. Not in relation to Lyme disease. Didn't know it was dangerous. I never protected myself and I never protected those girls. And it's wrong. We know better.

Now I try to tell Girl Guides I'm no longer a leader because I'm unworthy, basically. I don't have the mental capacity to take 15 girls camping and to be their guardian. I can't take care of myself. I tried to go back to Girl Guides to say this is why I'm out. We have to be changing this. These girls, they're in danger. Nothing has been done. I've been saying it for three years. Not a single talk through Girl Guides, nobody's invited me to talk because it doesn't exist, right? It's so wrong. We're-it's criminal. Then it comes to the health system and how I feel it failed me. When I was diagnosed, the first initial diagnosis-they thought I was having an allergic reaction. Sorry, my tremors are going to start in here. I'm going to try and finish quick. When they thought I had the allergic reaction, of course they shot me full of steroids right in the clinic.

When I walked into that clinic, I'm to give you an example. I'm going like this. Clawing at myself, begging her, "Please, make it stop. I feel like I'm standing in a fire ant hill after being poured with itching powder." They wrote me up as, "Patient is trying to remove skin from entire body." I was pulling at my eyebrows trying to remove the skin from my face. When they shot me full of that steroids, I got worse. They sent me to the hospital, three hours on an IV drip steroids. Sent me home with prescriptions for steroids and an EpiPen. Six weeks of my symptoms getting worse until I could press into my skull, softer than in my cheek. I went from working 128 hours in eight days to less than eight weeks later I couldn't stand up, walk or talk.

That introduction to steroids dropped my immune system and just boosted those little babies into army in me. They almost killed me. I see my red light's on. I got a little bit off track. But we need the information out there. We have to stop this from happening to other people. And we have to stop, as everybody here has said, the ridicule from doctors. I've been kicked out of offices. I have been yelled at at my own doctor's office and he said, "Do not ever mention Lyme in my office again." He kicked me out. I asked him for my records. They don't exist. There are no symptoms in my file for those eight weeks of going in with those-I have almost every single symptom in the Why Can't I Get Better? book. Not one is in my file. It has to change.

Alain: [01:15:46]

Thank you, Linda. Heather? Is Catherine Kinsella in the room? Okay, thank you. Heather.

Heather: [01:15:56]

Hello. All your stories are really touching. Thank you for sharing them. My heart's going so fast. I used to work full-time, clean houses part-time, dance, hike, have a gym membership. In 2009 that all went away. I became bedridden and I felt utterly useless. My name is Heather King, and I was unknowingly bit by a tick and infected with Lyme disease and a plethora of co-infections in 2009 when I was doing a photo shoot at Bruce Pit, which is a dog-walking park in Ottawa. Within two years, I doubled my body weight, my hands and joints would swell to the size of baseball mitts. I could no longer walk up a flight of stairs. I could no longer read a book. The worst was the reoccurring shingles once a month and the constant searing neck pain as well as the heart palpitations chest pain. I felt like I was losing brain cells. I felt myself growing stupid. The migrating joint pain was severe. I felt like I was losing my mind. I still do.

The pain in my neck and back were so extreme I had to chop off my hair and cut the necks out of all my t-shirts and sweaters. It hurt too much to wear them. Every day I was terrified I was going to die. Imagine going through this for seven years, living alone, no family. No neighbours. It took three years for a diagnosis. I got the first tier Canadian blood test done for Lyme, which was negative. The second tier came back ELISA reactive. My family doctor at the time said, "I don't know what this means," and threw it in my face. It was then I contacted Jim Wilson from CanLyme and if it wasn't for him and the U.S.A. Lyme doctor I see, I wouldn't be here today. Jim Wilson described to me that ELISA reactive means positive. I got re-infected on March 23rd 2014 when I did a photo shoot inside of a barn for a friend. I didn't think it through. Inside the barn are animals, manure, field mice, ticks live on field mice.

Got home, took off my winter gear to find what looked like a bull's-eye rash on my ankle. No one believed I could get Lyme in the winter technically spring. But every symptom returned. Recently I couldn't afford treatment in the U.S.A. so I was forced to wean myself off my cocktail of antibiotics. 65% done in three months. After three and a half years of being on long-term antibiotics, going off them was the worst mistake I ever made. Lyme started attacking my heart again, my joints, so many symptoms that were minimal or gone returned with a vengeance. Long-term antibiotic treatment may be viewed with the same stigma as chemotherapy is for cancer patients. In most cases the patient's survival rate is significantly improved as is their quality of life versus the disease. I haven't been able to work since 2010. I've lost so many friends and I have no family that lives close enough or wants to contribute to my care. I have to rely on what little ODSP sends me, and their package is not yet tailored to cater to someone with chronic Lyme. What we need is obvious.

Educated, compassionate doctors, long-term antibiotics covered in Canada, awareness, better testing, for this to be listed as an actual disability. I find it incredibly odd that my chiropractor, my naturopath, massage therapist, eye doctor, pain doctor, gynaecologist and my dentist know more about Lyme disease and chronic Lyme disease than my half a dozen family doctors I've gone through and every doctor I've seen at the emergency. These people, the above-mentioned, have treated me with the utmost respect, compassion, support. More than I can say, they treat me like a human being. One thing I'd like to mention also is Dr. Ernie Murakami. This man is a saint and has saved the lives of thousands suffering from this horrible disease. He dedicated his entire life to helping those with Lyme and still does to this day. I think they should end the disgrace and show this man the recognition and reinstate his license. Currently on my fifth infectious disease doctor, who says chronic Lyme doesn't exist. The last time I went to the hospital a couple of months ago, I was told to get out and go to the U.S.A. for help. I'm wasting Canadian taxpayers' dollars. In closing, we need to end the stigma surrounding Lyme treatment in all stages and move forward towards total and comprehensive care, planning for all who battle this disease, regardless of the stage they are at.

Alain: [01:20:36]

Thank you, Heather. Catherine. Is Jennifer Kravis-alright. Catherine.

Catherine: [01:20:51]

My name is Catherine Kinsella. I'm an RN and former research nurse at McMaster University. In June 2013, I was hiking with a friend in Charleston Lake Provincial Park, not too far from here. Because of the tick warning signs at the trail head, we checked for ticks several times during that hike. At that time I thought I would surely see or feel a tick bite and I knew very little about the disease itself. I did not know that ticks can be very small and stealth. They like to hide and climb up, that their bite is usually painless and that Lyme disease can be debilitating. Ten days after that hike, I developed sudden and severe flu-like symptoms. That would be my last day at work for three months straight and in total almost a year unpaid. Over the next six weeks, I would develop a page-long list of symptoms and visit my family doctor, ER or clinic every few days despite previous excellent health.

All of my symptoms were attributed to infectious mononucleosis, including meningitis, ongoing severe headaches, debilitating fatigue, a circular rash which was only partially visible to me, and a strange migrating rash. When my family doctor finally agreed to order the Lyme test, I had lost 18 pounds and had developed many neurological and cognitive symptoms. It took two weeks for my test result to come back. During those two weeks, I developed Bell's palsy-that's me with Bell's palsy-a painful shoulder palsy requiring many months of physiotherapy and I spent a week in hospital undergoing investigations for autoimmune disorders, neurological testing and many other possible infectious diseases. I was treated with high-dose steroids and discharged home. After seeing my doctor for blurred vision, she informed me that my Lyme test was indeed positive. I was her first Lyme patient, "But not to worry," she said. "Although Lyme disease is difficult to diagnose, it's easy to treat."

I was also referred to an infectious disease specialist, not knowing the strange world of Lyme disease management that lay ahead. My ID doctor informed me that I required only a few weeks of oral antibiotics, that any further follow-up would be done by my family doctor. When the rheumatologist and neurologist from my recent hospitalization saw my positive Lyme test, they both agreed that according to the current treatment criteria, I should receive a few weeks of IV antibiotics. With this treatment, I initially developed new symptoms, but eventually recovered enough to be able to work a few hours a week. Unfortunately when my treatment ended, my symptoms returned and week after week my health was again deteriorating. When I returned to my doctor, I explained my declining health as well as new symptoms such as chest pain and palpitations. He informed me that I had received more than adequate treatment, that I could expect to have lingering symptoms for up to a year, that now I had post-treatment Lyme disease syndrome and he does not treat that.

He also explained that research has proven that long-term antibiotics are dangerous and ineffective in treating Lyme disease and could lead to resistant strains of infections or possibly death. Despite not having significant pain issues, he mentioned that after a year I would likely be diagnosed with fibromyalgia. I was shocked. I had an acute infectious disease where treatment was working. I was being denied any further treatment and my health was declining to the point of not being able to work again. Evidence-based medicine takes into account the strength of evidence, the severity of disease, the individual response to treatment, the risk of treatment as well as the risk of not treating. I knew what was coming down the road if I didn't get treatment. I was not based on-I was not treated based on these criteria. I was then forced to do what most Lyme patients do. I sought out alternatives. I saw a naturopath and a U.S. Lyme specialist, both of whom had a far greater understanding of Lyme disease than any doctor I had seen. I was also fortunate enough to find a second Canadian ID doctor who agreed to treat me with long-term antibiotics.

These antibiotics alleviated my symptoms and allowed me to work, parent, rock climb with my teenage daughter and eventually recover. The same antibiotics are freely prescribed to thousands of patients with minor skin conditions and yet my own treatment felt like a covert operation. I don't like to take antibiotics and in the 18 months of my secondary treatment, we tried to wean or stop them several times only to have my symptoms return and my health decline. Finally last May, I was able to stop them without my symptoms returning. I have now been off all treatment for a year and finally have my life back. Without treatment I can't imagine where I would be right now. If I need treatment in the future, I will find it from a doctor with adequate knowledge and freedom to treat in whatever country that may be. If this federal framework is successful, that country will be Canada. I just want to say also that this is a visible sign of Lyme, but this is happening to people's brains, it's happening to their entire nervous system, it's happening to their heart and you can't see it. But, you know, fortunately for me I had a visible sign. Yes, thank you.

Alain: [01:25:52]

Thank you very much, Catherine. Jennifer, and is Linda Laidlaw in the room? Linda Laidlaw? Okay, perfect. Sorry, don't-no need to get up right away. I just want to check with our technician. Eric, how are the recording levels? Are they okay? Alright. Because people have a tendency to speak a bit off the microphone, so alright. Over to you.

Jennifer: [1:26:16]

Hello, my name is Jennifer Kravis from Oakville, Ontario. I'm a lawyer and I was a partner in one of Canada's top law firms. I then worked as a successful bank executive. Ten years ago, I developed very strange and debilitating neurological symptoms out of the blue. I saw many, many, many doctors and I had literally hundreds of tests. I was told that I might have Guillan-Barre syndrome, MS, depression, a brain tumour, anxiety and bipolar. I was eventually diagnosed with chronic fatigue syndrome or fibromyalgia that all the doctors agreed was triggered by a mysterious bacteria or virus. My ELISA test was negative and every doctor insisted there was no possible way it could be Lyme disease, despite me having over 60 symptoms consistent with Lyme. I was refused a Western Blot, despite begging to pay for it.

I have a 40-page OHIP summary charging taxpayers for every other possible obscure test imaginable. But I have not been allowed to pay for the one test that might have helped me. I became completely bedridden at age 36. I watched seasons change, weeks and months pass from my room. I couldn't read or watch TV. I only saw my girls, who are two and four, when they sat on my bed to watch TV. And I was awake but I could not open my eyes or talk due to this crippling and profound fatigue that I cannot explain. It was a nightmare. I had to say no to my girls every day. "No, I can't play with you. I can't bathe you. I can't watch your game. I can't push you in the swing. I can't play with you." I missed years of their lives. I lived in a terrifying fog of pain and despair and I was barely living. I endured daily crippling pain, debilitating, constant fatigue, explosive migraines, burning, stabbing neuropathic pain, muscle and joint pain, numbness, tingling, stuttering, brain fogs, seizures, vision changes, hair loss, twitching, spasms, early menopause, drenching night sweats and lethargy so bad I did not recognize myself.

Lyme has been completely financially devastating. I went from a successful breadwinner for my family to a convulsing, crippled mess that spent weeks, months and years dragging myself from the couch to my bed. My lost wages are well over $3 million. I sought treatment for fibromyalgia. For years I spent hundreds of thousands of dollars on every possible treatment. Nothing worked. A U.S. clinic tested me for Lyme at Quest Labs and Igenex. Both were negative. After five years a new doctor said I probably had Lyme, but explained that testing is often inaccurate. He put me on a couple weeks of antibiotics and said my test would probably turn zero positive. And it did. And just three days ago after ten years I finally got a positive Canadian test for Bartonella. Testing is a big problem. When I got my diagnosis I was subsequently fired by three family doctors, and when I was referred to an infectious disease doctor, she kicked me out of her office within the first two minutes.

I was forced to go to the U.S. and pay out of pocket. I got two years of long-term antibiotics, including one year of a PICC line with intravenous. And these drugs transformed my life. For the first time in eight years, I experienced dramatic improvements. My brain fog lifted. I could recognize and remember faces again. I was able to read. My stutter disappeared. I no longer have to nap every single day. I felt such a profound awakening after being shrouded in a fog of pain, fatigue and confusion. I still cannot work but I can get out of bed most days. I can volunteer and cook for my family again. I can drive longer distances. I can walk my dogs and watch my kids play sports. I can travel without crashing. I still struggle every day with fatigue and constant pain. I'm told I will probably never be cured. I don't know if I will ever work again. But I'm so incredibly grateful to have a life.

My U.S. doctor and my antibiotic treatment saved me. Lyme is horrific. It's insidious. It sucks the life out of you and is a living nightmare. It has robbed me of my career and the ability to be the wife and mother that I want to be for my family. Since I was 14 I have been a hardworking, productive, contributing taxpayer. Now I hate it. I'm a drain on the system and I live on CPP disability payments. My insurance company cut me off. And even worse, my eleven-year-old child is now sick with numerous debilitating symptoms. Her Canadian ELISA is negative. She's not allowed a Western Blot, yet her U.S. test shows Lyme positive, according to CDC. Despite all that, it's been three years and she remains untreated. Doctors are scared to even discuss Lyme. And as a mother I live with the terror of wondering what will her future be like.

Lyme is not rare. It is the complete and total opposite. In addition to myself, my daughter and my dog, I personally have eight close friends and family members, four of them children, who've contracted Lyme. Not a single one received a positive ELISA. Every single one had to fight with their doctors for diagnosis. My niece had classic bullseye rash. My sister had to go to four different doctors before one agreed that it was Lyme disease and would treat her. How many Canadians are being missed? In conclusion, it is extremely painful to look back and realize all of this could have been avoided had I been quickly diagnosed and properly treated. And I can only hope and pray that my daughter will someday be able to be properly treated here with compassion and care. Thank you.

Alain: [01:31:36]

Linda? Next up I think is Madeleine Lapointe-Millar. Am I right on that? Okay. Linda, please.

Linda: [01:31:47]

Hi. My name is Linda Laidlaw and I'm a professor at the University of Alberta. I'm here for my daughter Zheng, who is 13 years old. She's come with me even though she's ill, because we both know how important it is to tell her story to you. My daughter spent the first year of her life in an orphanage in China. When she was adopted, her orphanage gave her new shoes for a good road ahead. And the future seemed very bright for her in Canada. And it was for a while until she got Lyme disease when she was four years old. Then suddenly Canada wasn't such a good place for her to be because here doctors don't seem to want to treat this illness. We can't figure out why. It doesn't make any sense. Her neurologist tells me that over the years, she's had a million dollar work up. Many days in hospital, many diagnostic tests, and many tests for very rare genetic illnesses which she does not have.

When she got sick again a few weeks ago, one of her specialists insisted she be admitted to the hospital for another week of extensive testing. All of those tests have been negative, as they always have been. That week in hospital didn't help her at all because they aren't looking for the right things. Zheng's Canadian Lyme tests have never been positive and that means she can't access Canadian treatment. I told her doctors that I'd welcome them finding anything else. A new diagnosis would mean that we could actually get treatment for her here in Canada. My daughter sometimes says that she wishes she had cancer instead of Lyme because the cancer kids get help. When Zheng was five years old we traveled to the United States where she had different tests. The doctors diagnosed Lyme disease and two other tick-borne co-infections. Zheng got better but as you may know, treatments must be cumulative to get rid of multiple tick-borne co-infections.

Lyme treatments in the U.S. haven't been all that expensive, certainly a bargain compared to all the medical care she's received in Canada. And had she been diagnosed earlier, her present relapse might have been avoided. Now her Lyme is difficult to treat and may be what infectious diseases doctors call post-treatment Lyme disease, except that she always gets better when she's treated. Canadian doctors won't treat her illness, although they are sympathetic and many of her doctors seem to agree that Zheng has Lyme. Sometimes doctors will prescribe for a few weeks, then they say they can't treat her any longer. When they speak to me, these doctors won't look me in the eye. One doctor left that sort of message as a voice mail and that's it. I've asked to access better testing since it's possible my daughter was exposed to a different strain than has being tested for in Canada. I've asked for her to receive a spect scan as that could be more diagnostic. But no one wants to do that either.

In my day job, other than being a mom, I work as a researcher. In research, if you observe an unexpected response, something different from what you were expecting, that's often a sign of an interesting research puzzle. If you dismiss the response because you just don't understand why, then you're not really doing your job. In spite of all the documentation in the Alberta health system of Zheng's response to the right treatment, there seems to be nothing we can do. Alberta will pay for a lot of expensive specialists to watch her recover or to watch her get sicker, but we can't seem to get any help for the actual illness. This is crazy. One doctor recently told me that many illnesses are treated based on the response to treatment, even when research doesn't show why it works. Doctors use their clinical expertise. But it never seems to work that way with treatment for Lyme disease in Canada.

One infectious diseases doctor who observed my daughter's dramatic turnaround after beginning treatment, observed that the treatment seemed to be working, but she wouldn't provide anything in writing nor name the disease. The problem isn't with the results. The problem isn't with my daughter. The problem is with a medical system that has failed her. Zheng is still gravely ill but she is here today as an advocate for herself and for the children and adults we know who exist in the same uncertain predicament. We thank you for your attention and concern, and all those whose good road ahead will, with your help, include a medical system that recognizes and takes action on the myriad complexities of Lyme disease in Canada. Thank you.

Alain: [01:36:24]

Thank you, Linda. Is Connie-Jean Latam in the room? Marnie Le Page? Okay. Marnie afterwards. Madeleine Lapointe-Millar.

Madeleine: [01:36:42]

This is a challenge. Standing up is a challenge. Okay. I had hoped for two and a half decades to have the opportunity to do this. And here I am. And I'm almost incapable of doing anything. My whole family's in LeFlaire. I'm a caregiver for three other adults and I feel older than my mother who's over 100. I used to be a public speaker, a teacher, a social worker. I've been taking care of my children for their whole lives and watching them decline. Most people have children and figure they're going to see them grow up and have a life and develop those wonderful talents and abilities. And I have watched them lose and lose and lose. One is 30, the other's 28. They're both home and they're more disabled now than they ever have been. And what's ironic about this-there's a lot that's ironic. In 1980, I got a puppy from Manotick. And I took her home and took a whole bunch of ticks, like about 100 or 200 off her.

And the vet said, "There could be neurological problems in your dog." "Oh," I said. "I'd better take the ticks off. " So I did. I proceeded to get quite ill and I thought it was my chemical sensitivities and food sensitivities and a whole bunch of other things. I became disabled. I couldn't teach. I couldn't do anything. But I came out of it somehow, miraculously. Then I met my husband and we went on a honeymoon to Old Lyme, Connecticut. Because there was a horse farm there that I'd wanted to see my whole life. And I went and they said, "Gee, we're really sorry, but our horses are sick and my husband's dying and, you know, so look at them now because they won't be around for much longer." And we went home and I got pregnant. And the next year I had my daughter. And we nearly died. I know. Whatever. So we kept on and we lived in Stittsville. And we were outside a lot.

And when my daughter was five, she had a tick on her. She was in the backyard the day before. Gave her a bath every day. We went to our family doctor in Orleans where we live now. And that wonderful woman actually-well, it'd been on PBS the day before-diagnosed her with a six-inch bullseye rash, fever of 102. Very sick little five-year-old. And gave her treatment. Ten days of antibiotics, because that's what you do with a sick kid. And we then proceeded on a long road of getting sicker and sicker. And the school board that went, "Your kids are a problem. Would you like-you're a teacher. Keep them home and home school them." They were diagnosed with everything from Turrets to OCD to Asperger's syndrome. And eventually my daughter just stopped going to school. Again, "Keep her home, we don't know what to do with her." My son persevered and we kept him going and went through a whole lot of hell. And they're home, barely able to move. These two kids who were tested 180 IQ.

I wanted to be so eloquent today, but everyone else has been so it doesn't matter. You just need to hear that many lives, including my children's and mine, have been destroyed, and the hope is pretty not there. We're all on limited income. I'm 66 years old and I have to take care of them and my 100-year-old mother, in spite of how sick I am and what the medical system did to me. Beware. Because what they do is either tell you you have MS or that you're mentally ill. So I spent 15 years on drugs. And was 220 pounds and nearly dead. And I cut myself off and I've been going through five years of indescribable hell getting off those poisons. And here I am alive because I have to be. But I don't have much hope and we need hope. And my son and daughter don't have any hope. And we need hope. So this is what this is about. They couldn't be here, because they couldn't handle it, okay? But we need to find a way to be hopeful and have treatment, even for people like my son and daughter. Thank you.

Alain: [01:41:39]

Thank you. Madeleine, you were very eloquent. Marnie Le Page and is Patrick Leech in the room? Patrick Leech? Okay. Thank you.

Marnie: [01:42:05]

Oh, the night gets more and more emotional as it goes on. First of all, I want to thank you all for allowing us the opportunity to be at this conference and to speak. My name is Marnie Le Page. I'm a wife. I'm a mother of three beautiful girls. I'm a business partner. I love the outdoors and playing sports both indoor and outdoor, summer and winter. I love life. I don't have Lyme disease. My daughter does. My oldest daughter Brooke, who's almost 14, shares the same passion for life that I do. But to my heartbreak, she's sitting on the sidelines. She's a very down-to-earth girl. And she used to be energetic and vivacious. And that is until it came to a sudden halt. Brooke used to be a competitive swimmer, enjoying over 20 hours a week at the pool. Academically she was at the top of her class and she managed to maintain friendships in each of her surroundings.

She loved hiking and spending time outdoors at the lake. Highlights for her were spending a week at summer camps and racing the camp counsellors to maintain the title of fastest swimmer. Until she got sick. We knew right away that something was not right and other parents around me at the pool also realized it. She was swimming slower adding significant time onto her races and she was falling behind rapidly and she couldn't keep up anymore. We had her at the doctor within 30 days of the day we suspected she was bitten, which wasn't in an endemic area. And over the next four and a half months, despite numerous tests, ultrasounds and CT scans, the doctors weren't able to detect what was wrong. The one test that was never offered was a Lyme disease test, despite my numerous requests. We were refused at the walk-in clinic, our paediatrician, our emergency room and finally at the infectious disease unit.

We were told Lyme is not common here and it was the wrong time of year. After my persistence with infectious disease, it was ordered but it came back negative. My daughter was barely able to get out of bed, unable to read, unable to watch TV. Our final offer from the infectious disease doctor was to either see a sports doctor for her fevers, sore muscles and swelling joints despite her lack of activity, or a psychiatrist. It was suggested to us from the head infectious disease doctor that our daughter no longer wanted to swim competitively and she didn't know how to tell us, so she was making up her symptoms. This was not an acceptable answer. I then requested a clinical diagnosis based on her symptoms, which matched the documents I printed from our Canadian government websites. But I was told that a clinical diagnosis only occurred when a bullseye rash was present. This is contradicting.

We have reportable co-infections, Manitoba, that do not present a bullseye rash. How can it be that this was not considered from my daughter's undiagnosed ailment? How could it not be from infectious disease to suggest that? A few more tests that were unrelated to Lyme disease were ordered from the infectious disease, and we were told not to make an appointment for a follow-up visit with them, and I would be called with the results. I never received that phone call and was refused copies of the test results when I went down in person. All I wanted was for my daughter to get better and this forced us to seek a medical diagnosis and treatment out of our province at our expense thousands of dollars later. And with the diagnosis, it won't be treated here in Canada. Our healthcare system failed the future of my 13-year-old daughter. Since this diagnosis, our lives have drastically changed. I no longer work, but I've become a caregiver, a nutritionist, a therapist, a tutor, a researcher and an advocate.

My daughter's attendance at school is sporadic and she has not been able to attend since November. This is a crucial stage of development in her life both academically and socially. Over the past year, our Manitoba Lyme support group has almost doubled in size and we've become a family united by the simple fact that all of us have been dismissed by our healthcare system. Most of our members of our group have gone several years without a proper diagnosis and treatment, and their bodies show the destruction of Lyme disease. They're too tired and weak to fight this. But I'm not. This is the time for change and we want to have a role in it. I've attended this conference to learn as much as I can with an open mind. And I hope that all the people that have the decision-powers to make decisions will listen to our stories. Because we the patients and caregivers of Lyme are not going anywhere. And we're growing in numbers and we're not going to be ignored.

The fact that this conference has been put together and people have been brought in from across the country indicates to me that you know Lyme disease is more prevalent than has been admitted in the past. We insist that you allow us, the ones that are living with Lyme every day, to be a part of this change. We want representation in the federal framework. We want the medical profession to be educated and to offer clinical diagnosis in the absence of lab testing, of adequate lab testing. And this is important. We want acknowledgement and treatment of chronic Lyme disease. When you listen to our stories, I want you to replace our faces with those that are close to you, your spouse, your sibling, your children or your parents, and make the necessary changes that's going to save lives. Thank you.

Alain: [01:47:46]

Patrick and is Cathy Leeming in the room? Cathy Leeming? Okay. Patrick Leech, over to you.

Patrick: [01:47:59]

Hello. My name is Patrick Leech. I became symptomatic with Lyme disease in 2015. While my Canadian ELISA was negative, an American blood test was positive for Lyme and co-infections. But this was only after I saw several doctors, neurologists, pain specialists and naturopaths, only after months of ER visits, MRIs, blood tests, CT scans and nerve studies. One doctor suggested maybe I had MS. But it would take two or three years to get a diagnosis. In the 40 odd years since its discovery, Lyme disease has devastated the lives of millions of Canadians. People who suffer with chronic Lyme are not only denied medical treatment, they are denied the respect and compassion we usually would not think of withholding from individuals who are seriously ill.

People with Lyme are told that their symptoms are all in their heads or that they are faking it. We would be aghast at any medical system that treated cancer or AIDS patients in this way, and yet this is commonplace among Lyme sufferers. Peer-reviewed evidence-based research by Dr. Ying Zhang at Johns Hopkins, by Dr. Kim Lewis at Northeastern University, by Dr. Eva Sapi at the University of New Haven, and the list goes on, has shown that Borrelia burgdorferi produces dormant persister cells and biofilms, which are highly resistant to antibiotics, the effect of which is a chronic, persistent infection. When will we as a nation acknowledge that these people are suffering from a serious chronic infection? When will we allow doctors to offer appropriate treatment? Thank you.

Alain: [01:50:35]

Cathy and is Janice-sorry, Janet Lewis Anderson in the room? Thank you. Cathy.

Cathy: [01:50:45]

Hi, my name is Cathy Leeming. I live in London, Ontario. My daughter Christina has Lyme, we think. In 1999, she packed her bags and moved to B.C. as a healthy, athletic and social 30-year-old looking forward to the future. She is now at age 46 a woman with a strong will, yet confused, frustrated and sick with many disabilities of mysterious origins. She also has regret. Because in the early stages of her symptoms, a naturopath said that even though he couldn't medically prove she had Lyme, he had seen enough of it to know that she had it. If only she'd taken his advice. Christina received completely conflicting diagnoses from two western-educated physicians who said she had arthritis and not Lyme and who else-they also could not prove their diagnoses. She was told Lyme was not in B.C.

With no real proof to help her decide, Christina chose the advice of the people recognized by Canada's medical system. She is now no longer able to actively work or engage in sports as she has very few days with enough energy and minimal pain to participate in a normal, active life. The symptoms began in 2003, with pain and swelling in the right big toe. Or maybe it was the unconfirmed carpel tunnel resulting in surgery in 1990. As is true for many Lyme patients, she never had a bullseye rash or even saw a tick. Current symptoms are sore and swollen ankles, night sweats, knees, feet, fingers, wrists, back and now her neck are all swollen and sore as well. She has terrible GI problems. She has had a huge weight loss and some brain fog. Doctors and other medical experts count in the high teens at a huge cost to our medical system.

The list includes GPs, an infectious diseases doctor, many rheumatologists, an orthopaedic surgeon, Native and Chinese experts, naturopaths and a neurologist. They've all given their opinion, done tests and written prescriptions. Tests have included blood work. At one point they were weekly. Canadian Lyme test, negative results. U.S. Lyme test, positive. German Lyme test, positive. By they way, Christina's disease is not counted as Lyme in the Canadian registry, as you all know. She has had an ankle MRI, neck CT scan, neck x-ray and testing of her urine to ensure kidneys are not suffering. Diagnoses ranged from plantar fasciitis, carpel tunnel, seronegative arthritis, Lyme-negative for Lyme and negative for arthritis.

Treatments range from an application of stinging metals on ankles and feet, creams, herbs, exercises, orthotics, lose weight, leg, finger and wrist braces, use a cane, walker, shorten your hair to alleviate neck pain, don't drink Coke, numerous types of antibiotics and probiotics, restricted diets, acupuncture, morphine, medical marijuana, steroids, low-dose chemotherapy injections and Marshall protocol, also all biologics and disease-modifying drugs that have proven to be effective for arthritis have been taken by Christina, to no avail. After seven years of these drugs her doctor surrendered and declared, "We have failed you. Now whatever you choose to do, we'll support you."

The impact of this 13-year journey has been decreased quality of life, progressive pain, dependency on others, depression, anxiety, doubt, periodic loss of hope, frustration with western medicine versus alternative medicine and a real fear for her future. Another huge impact is financial. Loss of income for ten years has made an employable woman turn to government for assistance. Payments for alternative medicine and uninsured medical tests required relying on financial support from family and friends. The government has paid for drugs. They subsidised her transportation, testing and physician appointments. In conclusion, my hope is that this conference will provide the knowledge and tests doctors need to support their Lyme patients. Canada and its people can't afford to carry on in the dark when it comes to Lyme. Canada's better than this.

Alain: [01:55:26]

Thank you, Cathy. Janet Lewis Anderson. Donna Lugar, are you in the room? Alright, thank you, Donna. Janet.

Janet: [01:55:42]

Thank you and good evening everyone. My name is Janet. I am 63 years old. I am from Winnipeg and I'm with the Manitoba Lyme support group. My Lyme journey began 14 years ago in 2002 when I had a very strange bite on my chest. The reason I remember it so well is because it had the texture of a mosquito bite but it wasn't itchy. I thought that strange. The rash soon changed shape and size, eventually turning into papules, which I thought might be ringworm. My family doctor back then thought it was a fungal infection. The skin specialist thought it looked like a spider bite. Although the initial rash was atypical for Lyme, I actually did develop two bullseye rashes in the same general area four years later when my mother passed away. None of the specialists I saw during that time even twigged to the possibility of Lyme, nor did I.

Over the next ten years, my symptoms include a chronic tickle in my throat, abdominal bloating, gastroparesis, very weak neck muscles, neck stiffness, inflammation at my occipital skull, calcinosis in the soft tissue of my fingers, thyroid and adrenal problems and more. After many doctors' appointments and being dismissed with the comment, "There's nothing wrong with you," in 2012 I was diagnosed with a very serious potentially fatal autoimmune illness. This diagnosis in some ways actually saved my life. However, now the rheumatology discipline was about to fail me. Because I kept connecting my symptoms back to the odd rash from 2002, the autoimmune diagnosis just did not resonate. I had faith in my immune system. Our bodies are miraculous creations, and I knew my body was fighting for me, not against me. Immune dysfunction, yes. And perhaps some collateral damage along the way. But I knew at the cellular level that my body was waging war on my behalf. No way was I going to take any of the toxic drugs typically associated with autoimmune diseases, Methotrexate, steroids, PPIs, etcetera, only to treat symptomatically.

I wanted to get to the root cause of my illness and so began my own research into the world of Lyme and chronic infections. After testing outside of Canada, I received a positive diagnosis in 2013. Now I had something to work with. However, I had no idea how challenging it would be to find a medical professional who would and could provide me with a specialized and an adequate treatment protocol. Finally in the spring of 2014, I began a treatment which I hoped would eradicate the Lyme, co-infections and the opportunist infections as much as possible. I also needed to rebuild my immune system, all at my own expense. Now I felt that our public health system had also failed me. Since obtaining specialized treatment, I reiterate, at my own expense, I'm doing fairly well.

However, this journey remains a constant challenge. The most shocking thing about this experience is being misdiagnosed with an autoimmune condition, being told that the cause is unknown yet refusing to consider an obvious infectious trigger. So my question is, How many other people have been misdiagnosed with an autoimmune disease or left with an idiopathic diagnosis when in fact, they are probably struggling with Lyme disease or some other pathogenic organism as the trigger? I'm not a doctor, but I am smart and so is my body. However I'm tired. Extremely tired of being dismissed and having to figure out the path to wellness myself. We need and deserve specialists in functional integrative medicine and vector-borne illnesses. It is our right as Canadian citizens. Thank you.

Alain: [02:00:44]

Donna, please. Jill Hugo. Alright. Donna.

Donna: [02:00:55]

Okay. I'm losing my voice, sorry. Good evening everyone. My name is Donna Lugar, and I'm from Nova Scotia. I was clinically diagnosed with tick-borne diseases in 2011 after many years of steadily increasing symptoms that affected all systems. At the time of my clinical diagnosis, I had 48 symptoms. I am very happy for this opportunity to speak about some of the things I think need to be changed. And I truly hope that those that can effect change are listening to what we have to say. As the Nova Scotia contact person for CanLyme and the originator of the Lyme Disease in Nova Scotia and the Maritime Provinces Facebook page, as well as the fact that I run a support group, I regularly receive emails and telephone calls from people suspecting that they may have Lyme. From the conversations with others dealing with tick-borne diseases, I have come up with some issues that need to be resolved.

All doctors need to be at least aware of the basics, such as that the EM rash is a definitive sign of Lyme but not everyone presents with an EM rash; that the ELISA has sensitivity and specificity of limitations and a negative result does not necessarily mean you don't have Lyme; that co-infections are becoming the norm and that disease-carrying ticks can now be found just about everywhere. Properly trained doctors are required throughout the country that can clinically diagnose and treat all stages of Lyme and tick-borne diseases. Lyme is not just a bullseye rash and flu-like symptoms. It can be so much more. More information needs to be available about co-infections. In Nova Scotia, several possible co-infections have now been found in ticks. Knowledge about these is limited. Doctors should be allowed to treat their patients how they see fit. In other words, they should be allowed to follow either the IDSA or ILADS guidelines and they should be allowed to treat until symptoms are eradicated. More education is required in medical schools regarding tick-borne diseases as they are a worldwide problem.

As we can all agree, the quicker tick-borne diseases are diagnosed, the better. So GPs need to stop separating the symptoms and look at what could be causing them all, rather than sending a patient to various specialists for each individual symptom. This delays and sometimes prevents a proper diagnosis and treatment. This delay obviously impacts the patient, but can also end up costing the government a considerable amount of money, which could be better spent elsewhere. On a final note, I would like to thank the organizers of this conference for allowing the opportunity for us to speak, better yet, to give us an opportunity to meet some of the people that has helped me through this journey. I'm not sure where I would be today without their support. If it wasn't for social media and Facebook and things like that, we would not have any of this information. And most of these people here are only here because they're aware of it through Facebook. The people that aren't on Facebook and are not as social media savvy are sitting at home dying. And at least we are here and have this ability to speak, and thank you.

Alain: [02:03:58]

I just want to make sure we haven't missed anybody. Susan Faber? No. I just want to make a final check. Elaine Husband? Okay. Connie-Jean Latam? Alright. Let's go to our final speaker. Jill Hugo, please?

Jill: [02:04:21]

I'm going to try not to be a basket case. No guarantees. Alrighty. I am a caregiver to my son. His name is Connor. He would have attended but he's too ill. So I'm here to represent him and the rest of our family that it's affected horribly. I don't need the Lyme-knowledgeable people to imagine, but the rest of you could imagine that this has happened or is happening to your child. Connor was always active, always outside. He was a boy, traveling in summer camps. We spent half the summers in New Brunswick, the rest of the time outdoors in Alberta. Since the age of 13, he came home, off the school bus and went straight to bed. Headache, numbness, light sensitivity and fatigue. We thought it was the flu. We waited a few days, took him to the doctor. The doctor thought it was the flu. It ended up-we didn't find any positive results.

The doctor recommended a healthy diet and drink lots of water. So this went on. The symptoms persisted for the next two years. Worse, the head pressure, the eye pressure, the joint pain, muscle weakness, the brain fog, profound fatigue. I sound like every other story and I don't know how doctors have not caught on to this yet. Well, digestive and insomnia issues. Connor was sent to an ophthalmologist and a neurologist and then another neurologist and they decided he had Chiari malformation. So he underwent the five-hour invasive brain surgery. That was a misdiagnosis. The next year he was diagnosed with chronic sinusitis and had more-quite a detailed surgery, but that didn't help anything. He continued to see his family doctors and neurologists. No improvement except copious amounts of debilitating prescriptions. Connor was then directed to the Headache Specialist Clinic in Calgary.

Even though his list of symptoms far exceeded his head pressure and his eye pressure and any head-related things, he was diagnosed with daily chronic migraines. I don't know about you guys, but that's all new to me. I didn't know that was a thing you could be sick with. Anyways, they continued to give him prescriptions, nothing worked. Connor was then referred to the psychologists, the next typical step in our journey. Connor was tested for lupus, rheumatoid arthritis, crones, colitis, allergies. Cleared of everything. His mounting symptoms have left him disabled at the age of 19. He can no longer work, attend school, most days doesn't leave the house. It was a friend, and never a doctor through all of this, through all these years, it was a friend who said, "Hey, he sounds like what my wife has. And she has Lyme disease."

So after seven years of illness, he was tested in Canada. That was negative. I sent it out of country. He was positive. Now he has tested positive for different infections at four out of country labs. But Canada is hell-bent on saying, "Our testing is gold standard and there's nothing better." Canada cannot discount every other lab in the world. You don't have that leg to stand on. Well Connor's test came back negative, his ELISA test, and his doctor was more than smug to tell us that, because I had to push to get that test done. I asked to be referred to somebody, an infectious disease specialist somewhere to address my son's failing health. Well she turned to me and gave me a lecture about wasting taxpayers' dollars and how dare I and she's not about to refer us to anywhere else. And then she turned to my son, and I quote, she said, "Go home, lose some weight and work on getting yourself better." And she left the exam room. I came this close to driving my car through that hospital front door.

So Connor's neurologist, after seeing a picture of his EM rash, and seeing his out of country results, he referred him to infections disease doctors in Calgary. We were really hopeful. But actually, infectious disease doctors in Calgary refused to see my son, citing that his Canadian test was negative, the out of country tests were not relevant and they had nothing further to add. So to this day-I don't know how-is this how ID works? Infectious disease doesn't have any cases to report because they don't see the sick patients?

Female: Yes. Yes.

Jill: That's pretty cool. It's a pretty cool way to operate. Anyways, our medical system has spent hundreds and thousands, if not more, dollars denying the prevalence of Lyme disease instead of treating the people with Lyme disease. Connor's nine years sick now. He is chronic. Lyme disease patients are starving for proper treatment. We support causes around the world, but Canada cannot support its own ill citizens. We need to educate our doctors. We need to teach them how to diagnose clinically and recognize the symptoms of Lyme disease. We need reliable testing methods. We need proper effective long-term treatment for our sick children, sisters, husbands, brothers, aunts, uncles, grandparents, babies. They need effective, reliable treatment. And we do need awareness beyond social media. We need some print. We need it in every town across Canada. I do want to leave with one quote: "In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease." Thank you.

Alain: [02:11:19]

Thank you for so generously and courageously sharing your stories this evening. I hope that my time limitations-well I hope that they didn't leave any ill feeling. We certainly wanted to hear all your stories and you so generously contributed those this evening. We will do our best tomorrow at-right after lunch, to give you a sense of some of the themes that have emerged in all of the rooms. So you'll get a very quick synopsis. We're getting together to kind of collate the themes that we heard over the course of the evening. We start at 9 am tomorrow. And I'm getting a signal from Eric in the back that we cannot leave this room right now for five minutes. Oh, okay.

Female: We can ask questions.

Female: Ask questions.

Alain: Well, well let me now flip this around. Anybody that didn't get a chance to speak, if you would like to share a story, maybe a minute or two. Come on down.

Female: Come on, Carly. Go for it.

Alain: We have time.

Carly: [02:12:40]


Alain: What's on your t-shirt?

Carly: It says, "Lyme won't kill my vibe." I was just diagnosed officially, by Igenex of course about a week and a half ago. I have two sons, three and a half and one and a half. And the whole last year and a half of their lives have been having Mom in bed. I'm sorry. This is why I didn't want to speak. I feel like everybody, every doctor I've ever seen in the past year and a half has let me down, every one except for my naturopath. And now I have to spend money again that we don't have to go to B.C. to get antibiotics that will help make me become a mom again. Thank you. I'm actually out of tears. I have no idea what else to say. You guys have said it all already. I relate to so many of you and I just wanted to reiterate that something really needs to be done. Something really needs to change. This isn't okay. We shouldn't have to rely on the States. We shouldn't have to rely on another province. We shouldn't have to spend more money out of our own pocket after we've just spent the money on the test for you to diagnose ourselves and then still not be able to prove that that test is positive. Anyway, I think you get the gist.

Female: So where are you from and are you on any meds?

Carly: I'm from Winnipeg and my doctor just put me on four weeks of antibiotics after I told him that I wasn't going to leave the room unless he did.

Female: Good girl.

Female: Wow.

Alain: The power of insistence.

Carly: Yes. So then I'll go to B.C. and hopefully get more. But who knows. Anyway, thank you. That's all I really had to say.

Alain: [02:14:57]

Would you, please. I'd like to donner la parole to those of you that haven't had a chance maybe to speak. Do you want to come up? Voulez-vous venir? It's because we will not be able to hear - wait for me. Wait a minute.

Manon: [02:15:22]

My name is Manon Lavallée, I am from the Montreal region of Quebec. I'm sorry, I do not speak English.

I got bitten, I do not really know where. It was where I live in Saint-Hilaire or in Vermont when I went camping, and I found myself really sick in the city of St. Louis in the US. I was hospitalized. Then I asked the doctor to do, because we had passed close to Connecticut, I said: "Can you give me the Lyme test?" He told me - he did all kinds of tests and he said it was negative.

Then we went back home because we did not - for six days I lost track of time, I had a headache, I was - I was just covered in spots. I did an encephalitis. When I arrived in Quebec, I went to my family doctor, and she is very open. She said: "I'll give you the test." She gave me an appointment with a microbiologist. He performed a Western Blot. It was positive but the problem is that they are not allowed to prescribe more than 28 days of antibiotics.

So it's not just a matter of detecting it. Even when it is detected, after 28 days I went back to see him, he said: "You're cured. I can't do anything more for you." I said: "I am cured?" Listen, I saw a neurologist, a psycho-neurologist who diagnosed me as disabled and I'm cured. There you go. I have been cured for two years but I still have pain everywhere and no medication, nothing.

There you go. It is not enough to diagnose it, it must be treated.

Robyn: [02:17:34]

Hi, my name's Robyn Lamont. And we all have stories that are so much the same and I have, like, a list of people I want to hug before I leave. Which brings me to I think something that we haven't been able to talk about tonight. There's so many critical issues, but our secondary methods of transmission. Because definitely in utero we know there's a lot of research about that, but I also need to speak to the point of the fact about its sexual transmission, which a lot of people ignore particularly. I don't hear about it in the media, but I can tell you about it in my family because I gave it to my husband. So we're both post-treatment and doing better, but I feel that's an issue that needs to be brought up hopefully in every room, because it is part of the problem that people-we don't know all the ways that it's being transmitted. So I'm not going to add my story. They're all so similar and so ghastly. But everybody, remember that's an issue as well. Thanks.

Alain: [02:18:39]

Before I return the microphone-because some of you want to speak for a second time. Before I do that, I want to make sure that those that haven't had a chance can get a chance.

Jennifer: [02:18:49]

Thank you. My name is Jennifer Hornby Gillespie and I'm born in Montreal, raised in Brockville in the Thousand Islands, which I understand is highly endemic for Lyme. But I lived almost ten years down in Maryland and I did not know anything about Lyme disease. I was infected at the time that I gave birth to my son and I very quickly became ill. And then as we all know, we all have the same story about the migratory pains. After nine months, I finally got treated by Dr. Dan Cameron, who's president of the International Lyme and Associated Diseases Society in the United States. And in my experience, if there's a silver lining, is that all the horrors that I had gone through with the long list of doctors enabled me to not waste time getting my children treated when they were bitten and infected.

And I would brag to all my friends, all my American friends, about how great the Canadian healthcare system is, and surely Canada's going to come up with a vaccine or a cure. I couldn't wait to get back home. And when I came here I was so horrified to learn that the test that they use, the ELISA, is still being used in Canada. But they did away with it in the United States over a decade ago because it's so inadequate. And then here, Canadians-we have coverage in the United States because my husband's American. I don't know how Canadians do it. We paid $14,000 a month. A portion of that, but that was what insurance was being billed. I know your pain financially. I am praying that they come up with a cure and a vaccine, because as somebody else mentioned and we all know, we have it for our dogs but not for us. Thank you.

Janet: [02:20:49]

Okay so. Just speak right into it. Hello. So my name's Janet, and I have the same story as everybody. I think I probably got Lyme 25 years ago, and-but I finally got really, really sick to the point where I couldn't work anymore a couple of years ago. And eventually-I was lucky, I guess. I have an environmental doctor who sent my blood to the States and was, like, "Yup, you have Lyme. That's what I thought." So-but I'm really interested in how this is going to be treated. Because at first I was really optimistic, because at first antibiotics were incredibly effective. I could only tolerate them once about every two days. But when I-for the first two weeks, I was, like, "I'm done. I'm cured. This is amazing." Right? "I haven't felt this great in years." And then for some reason, after, like, when I kept doing antibiotics beyond a month, I got really, really sick again. And it's not clear-it's, you know, I think it's really complicated.

And then I started researching the issue of how to get well. And I found that there's some really interesting naturopathic approaches that have been suggested. I didn't have the guts to-there was a book I read by this guy Booner, probably people have heard of him. He's in the States. And I didn't have the guts to do it on my own. So I went to a naturopath who I spent $600 on and it yielded nothing. And then eventually-fairly recently I started seeing a traditional Chinese medicine doctor here in Ottawa. And I just want to mention this because I don't know. Like, I'm not cured yet. I've only been seeing him-I say, "Yet," hopefully. I've only been seeing him for a couple of months. But I have to say that the stuff he's done for me, it's the first time that I have had some improvement with no pain.

Like, all the other treatments, it would cause horrible (inaudible)-I don't know, whatever. Horrible pain. I couldn't tolerate it. It was unbearable. And with the traditional Chinese medicine, within a week I started having improvements in my digestion, and I'm, you know-it's a battle, right? But I feel like I'm improving. You know, I don't know. But I think so. And so I just think that's important. I hope it's-you know, I hope we're not just going to be lined up for clinical trials like the microbiologist mentioned. I just, you know-and then other alternatives, including a lot of-because, you know, how many societies have dealt with weird bacterial infections? Like, it exists in so many parts of the world, and I'm sure that there-you know, the truth is out there, yeah. Alright, thank you.

Alain: [02:23:18]

And you are?

Heather: [02:23:18]

I am Heather Allan. I come from Winnipeg, Manitoba. I do not have Lyme; I'm not infected with Lyme, but I'm affected by Lyme. When Lyme enters your family in any sort of way, it is indescribable. It affects-the cost of Lyme to a family-it's just not the immediate family, it is the extended family. I am one of the extended family members. It extends to your social family, and there's such a cost to it economically that's not even just to the initial family. Lives change, dynamics change. The cost of losing your friends, the cost of trying to be somebody that you can't be anymore, and your family unit is never the same. And it-I have to tell you, I am heartbroken. We're new to Lyme. We've been in this only a year, but listening to some of your stories, it is just awful. And I am also one of the ones that doesn't have it but I'm going to fight for all of you. I'm smart and I have a statistical background, and I know that numbers talk. And I guarantee that is what's going to make the change happen, and we'll make it happen. And that's our promise.

Alain: [02:24:36]

(Inaudible). No, not quite yet. Michelle?

Michelle: Yes, thank you.

Alain: Nobody's leaving (inaudible).

Michelle: [02:24:46]

Five minutes is not long enough. I have never seen a blacklegged tick in the Bow Valley, only dog ticks, the dermacentors. Yet many have been bitten and got the bullseye rash and have developed Lyme disease. There are many strains of Borrelia. New strains of the Borrelia bacteria are always being found and testing will always be challenging due to its ability to change form. So all these tick tests that are going on, we just need to focus on treatment, because it is everywhere. It's all across Canada. And obviously it's not helping us in the Bow Valley. There are 1600 people with Lyme in one Facebook group, yet most are not included in the national database. People are only included if they test positive with both tests, which are faulty. And this needs to change. There are at least two dozen people with Lyme in the Bow Valley. So this is Banff, Canmore and the Lake Louise area. If I'm the only person in the Facebook group out of two dozen people and it's a similar scenario across Canada, there are thousands of people suffering across Canada.

This does not include all the misdiagnosed that are suffering from chronic fatigue, fibromyalgia, MS, Alzheimer's, Parkinson's, ALS, arthritis and the list goes on. And one thing I didn't mention in my talk and that I think is a really valid point is that people can be bitten by a tick, affected, and it can go into your joints and you don't really have a lot of symptoms. I had an MRI on my knee because my knee was bugging me but it took me three months to get in to see the MRI. When I got the MRI, before I got the results back, within that time I had the same pain in every single joint. I thought, "Okay, whatever's going on in that knee is going on in the rest of my body." What happened was there's not much left of my knee and they told me never to run again. And I'm, like, "Okay, well I don't really like running anyways." And they were going to tell me about skiing. And I'm, like, "I don't want to know. Just forget about it." The moral of the story is it affects you without you even knowing it until maybe it's too late. So we need diagnosis now.

Alain: [02:27:07]

Thank you, Michelle. (Inaudible).

Holly: [02:27:15]

This one? Okay. The stories I've heard tonight as a researcher who's travelled the world to study tick-borne disease with a particular focus on prevention and risk management. Your stories are the same as those people in Australia, au France, in England, in Eastern Europe. Stories are similar in South America. You're not alone. And one of the things I'd like to point out, one of the themes that I heard tonight was that the United States is where it's at. And I'm here to tell you that Igenex tests are not accepted by doctors in the United States. I pay out of pocket for all of my treatments because the insurance companies refuse to pay for Lyme treatment. It is not any different in the Unites States, and the battle with the CDC goes on. So what I encourage you to do is reach out to your MPs. They're your voice. You've elected them. As Canadians, you've had the privilege to elect. And these MPs are your voice, and Parliament. And I really, really encourage you. There's one right here. She's here representing her area, her people, her citizens. There is a round table discussion. It's voluntary, all MPs from across Canada have been invited. It's on May the 30th. It's a critical discussion that needs to happen. Reach out. Make sure your MP gets there. And best of health to all of you.

Alain: [02:29:00]

I'm going to call our session, our open forum this evening, to a close. However be mindful if you just want to take perhaps an opportunity to network. I believe that we can't yet exit the room. Eric, can we actually… There's somebody that's-the paramedics are outside. So, yeah. Okay. So we will adjourn here. If you want to take a few minutes, perhaps network. There was a great suggestion that some of you need hugs. Please feel free to do so, but ask for permission first.

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