2016 Lyme disease conference public forum 2 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, Freiman/Guigues room
Good evening, everyone. I expect that a few people will stream in, because I'm expecting a full room. But I think we'll get started. So my name is Kathleen Conlay. I'll be facilitator today. So my role tonight is really just to make sure that we achieve our objectives in the amount of time that we have allotted to the degree that that's possible. So I'll be helping with time management. I should say, I'm not at all an expert in Lyme disease. Just so you know, I am an expert in my field though however, and that is group facilitation. So I'll do my best to help us all have a productive evening tonight.
So our objective tonight is to hear from 26 people who have offered to share their story with us, any key messages that they want to share with us. They've been given, as my colleague said, five minutes. Don't feel you have to take five minutes. Obviously, I mean, if you feel that you want to deliver your message in fewer time, that's perfectly fine as well. But assuming that everyone does take five minutes, our challenge is going to be to done by 9:30 because we have just enough time, and actually we're already a few minutes late. So I am going to do my best to help people. And one of the things I will do is, if I have your permission, is at four minutes I'll just say, "Four." And that lets people know that they've got a minute to go. And at five I'll say, "Five." And that way you at least-because I know that when we talk, we-it's easy to sometimes lose track of time.
There's also a lighting system here, which is kind of cool. When it's green, you're good to go. When it's yellow, it's-you've got one minute left. And when it's red, it means that the five minutes are up. So Chris and I will make sure that we're well coordinated in terms of both of those cues. And obviously the truth of the matter is if each person even took only another 60 seconds, that would add half an hour to our evening. So I'm just going to ask us to be very diligent about that. I have the list of names, so I'll be reading them off as I have them. If there's time at the end and a few other people want to speak, that would be welcomed. So we'll see how we do with time. And the tri-chairs will be circulating, so do not be alarmed if you see people coming in and out.
Feel free to speak the official language of your choice. There's some headsets at the back for tomorrow because tomorrow there will be simultaneous interpretation, but there isn't tonight. Cells and Blackberries on silent mode, if you haven't already done so. And the washrooms are right here. And then feel free to stand up. You know, if you need to just move around and stretch your legs at any time, please just feel free. You know, this is informal. We encourage you to just do that at any time. So I think that's all I need to say for now. So I will go through the list and I'll always announce the next person as well just as a little heads up, okay? So the first person is Cheryl Abbate, so I'll invite Cheryl to come speak. And then it will be Barbara Agar. Welcome.
Thank you. Every Saturday morning for many years, my family and our dog visit our local Point Pelee National Park. In March 2007, following our routine park visit, I found a tick attached on my abdomen. The tick already appeared engorged. I remembered hearing mention of Lyme disease in the park's tick population. But we were not aware of the potential dangers for our family. Three weeks later I was sick with the worst flu-like symptoms. I went to the doctor and told him about the Point Pelee visit resulting in the tick bite and the tick removal. I requested a Lyme test because of my symptoms and my concerns. My ELISA results were negative. My doctor was confident that I was not infected because I didn't have a rash and the negative ELISA test.
At this time, I was uneducated about Lyme, but I have since learned my family doctor was uneducated as well. Although my initial symptoms eased somewhat, I have never felt well since that bite. Over the following months and years, I noticed increased fatigue, sinus infections, bronchitis, ringing in my ears, vertigo, light sensitivity, sound sensitivity, tooth surgeries, joint and muscle pain, bright lights in my right eye, skin lesions, hair loss and many other symptoms. I began doing everything I could to strengthen my immune system. After numerous office visits, my doctor referred me to different specialists, including an ear, nose and throat doctor, pulmonologist, neurologist and internal medicine doctor. It was found that I have asthma, two leaky heart valves and acid reflux. But none of the specialists had a diagnosis for my multiple debilitating symptoms.
After my increased doctor's visits and my insistence of something being wrong, my GP threw up his hands and told me he couldn't find anything physically wrong and suggested an anti-depressant. When I insisted something was wrong and we hadn't found it yet, he became angry. I was told he would not send me to another specialist and I realized he was giving up on me. This forced me to start looking for an answer on the U.S. side of the border. A Michigan ear, nose and throat doctor diagnosed vertigo. A Michigan neurologist discovered multiple white matter foci on the brain MRI, yet no one seemed concerned about what they had found. My symptom list was increasing and I had lost my sense of smell and taste, and I was losing the vision in my right eye.
During this time our family dog was sick and our veterinarian discovered our German Sheppard had Lyme, and it was confirmed with a ten-minute blood test. This is when I knew I needed to be retested for Lyme. And after the second negative ELISA test in Ontario, I turned to the Internet to find out if there was a reason why I would test negative if I did have Lyme. I discovered the controversy and the symptom list on CanLyme's website containing all of my symptoms. I wanted to rule out Lyme but felt I could not accurately do so in Canada. I found an infectious disease doctor in Michigan who specialized in Lyme and he ordered the standard Western Blot from LabCorp and it came back as a strong positive. But it was also positive for Bartonella and Toxoplasmosis as well.
This was in August of 2011, four and a half years after my known tick bite. I began treatment immediately through my Michigan doctor. When I told my family doctor in Ontario about the results, he referred me to a local infectious disease specialist. This specialist, after reviewing my faxed test results, phoned me at home and refused to see me because my Ontario tests were negative. I had three infectious diseases and the infectious disease doctor in Canada would not see me. Unfortunately this was not the last time I was told by Ontario specialists they would not see me again after learning about my U.S. diagnosis. I have been dismissed by a rheumatologist I saw for severe joint pain, a dermatologist for skin lesions and a neurologist.
My third MRI showed 28 brain lesions, four of them deep. The Canadian neurologist told me that it was not MS but Lyme was questionable, and he actually said, "I don't have a diagnosis for you and I don't want to see you again." 28 brain lesions and a neurologist can't diagnose me and won't see me again? I don't know what else I could have done to get an accurate diagnosis. I did everything right. Now I realize the guidelines doctors must adhere to are flawed. In a recent conversation with my family doctor, he stated there is no way he would ever take on the college by treating patients with undetermined test results in Ontario. He would only test with a positive result. We are not suffering from mass hysteria. We are suffering from mass neglect.
Thank you very much, Cheryl.
Cheryl: Thank you. Did I make it under five?
Kathleen: You did.
Cheryl: I was speaking really fast.
Kathleen: No, it was fine. Okay, so I will invite Barbara-I believe it's Agar.
Kathleen: And then after we'll hear from Sue Aldous.
Barbara: Is it okay that I sit down?
Kathleen: Absolutely. I will give you a microphone.
Barbara: Oh, that would be awesome.
Kathleen: (Inaudible). That's why the chair is there. You have that option. Chris, is this microphone on? Does it work? Yeah, it works. Thank you.
Barbara: Thank you. Okay.
Kathleen: Do you want someone to hold the mic for you?
Barbara: I'll see how it goes.
Barbara: But maybe partway through if I just start shaking too much, that might have to happen.
My name is Barbara Agar. I'm 52 years old. I was diagnosed with Lyme disease in May of 2013. I'm in my third year of treatment for Lyme disease and two co-infections, Babesia and Bartonella, under the care of Dr. McShane in Plattsburg, New York. First of all, I have to tell you that I was always a very positive, happy person and active and involved in many activities and sports prior to becoming ill. I could go on in great length about every single illness and the story of my life for the last 25 years.
My illness spans from at least 1991-thank you-when I was first unable to work. But I had begun to have health issues for quite a few years prior to that. I relapsed once in 2002 and then again in 2013. In February of 2013 I had what I call my stroke-like event and I have never been the same since. Prior to this day in February of 2013 I hadn't really taken notice of the increasing ringing in my ears and the hearing loss, my lopsided gait, walking into doorways, jamming my left foot into the floor and stumbling as I walked, feeling like the floor suddenly tilted to the one side, my inability to retain anything that I read and the fact that I was reading more and more slowly all the time. I can read now. And not throw up. So not to mention the ever-present joint and muscle pain and the annoying tremor and head pain. And these were just a fraction of the ever-growing list of symptoms that I had.
I could no longer work as a paediatric intensive care nurse. My gait became very unsteady. My balance was off and my short-term memory is out the window. I became disoriented while driving and did not recognize familiar places. And I had to ask my daughter where I was so I could make it home. During the summer of 2013 while I waited for my first appointment in September with Dr. McShane in New York, my neurologist suggest-sorry. Neurological status deteriorated, increased spasticity of my arms and legs at night, jerky movements when I walked, my body vibrated all over. I got the positive Western Blot back and the Center for Diseases Control says that I have Lyme disease but nobody in Canada wanted to hear about it.
After three years of treatment, I realized it is a slow process and an uphill battle but I'm making great progress, especially in the last six months since I started an anti-malarial drug which is being pulsed with artemisinin. Yes I am here to help develop a national strategy for the prevention and treatment of Lyme disease in Canada. Yes I am here so that others will get their Lyme disease diagnosed early and won't have to suffer the long-term effects of this infection. Yes I am here to fight so that these people will get proper, prompt treatment in Canada according to the ILADS guidelines and won't have to pay out of pocket, use their RRSPs and sell their homes just to finance treatment. But I am not completely altruistic. Yes I am also here for me today.
Things are critical for me and my family and now we need financial support to pay for the treatment because we can't afford to wait. For the entire length of my illness I have nursed myself back to health without the help of the government or the insurance companies. These expensive treatments that I've had were never covered by any of them. When I was being worked up for chronic fatigue syndrome back in 1991, I remarked to the young resident that I was impressed with her open-mindedness to the existence of chronic fatigue syndrome, which was at the time being rejected by most of the medical community. And I asked her how she came to be this way. She told me that when she was a medical student, a woman came to talk to all of the students about her experience being sick for 30 years and never being listened to, and finally was diagnosed with multiple sclerosis.
I remember going home and saying to my husband-to-be that day, "Can you imagine being sick for 30 years and not being believed?" Never would I have imagined that I would be waiting almost as long to finally be heard. Here we are today. I have put all my negative experience with all the doctors behind me, those that never believed me, thought I was depressed or a hypochondriac, those infectious disease specialists who refused my doctor's referrals, three of them, because I had Lyme disease, and those that had no time for my complex issues and multiple symptoms. I found the doctors who were able to deal with my current issues and avoided those that refused to acknowledge the existence of Lyme disease. In that way I was able to save a great deal of energy for the purpose of healing myself and focusing on the treatment that I require. Coming to this conference today is very traumatic for me because it is reminiscent-I didn't know what kind of crowd it would be.
Barbara: And it's reminiscent-yeah. But you never know who you're going to bump into. And I said-so I-it's reminiscent of all the negative doctors' encounters I've had in the past. I'm hoping to meet likeminded people that are vested in moving forward in this framework. I'm on edge, on the defensive and ready for a fight, which is-and I don't want to be. But I'm afraid to leave here disappointed and feeling left on my own once again. I feel like, after hearing the intro, that we're headed in the right direction. But-and we just have to work together, take down all the walls and move forward.
Kathleen: Thank you, Barbara. Okay. So I'll invite Sue Aldous and then we'll hear from Angie Allaire.
I'm Sue Aldous from the Parksville B.C. Lyme disease support group. I've had Lyme disease for over three decades and have been in treatment for almost half of that time. Oh God. Within a year of being diagnosed I became a founding member of a support group which quickly morphed into an awareness support group, and this became my passion. Since then I have founded several Lyme disease support and awareness groups, both online and those that meet in person. Over the years, I have communicated with hundreds and hundreds, if not thousands, of Lyme disease patients. And I have to tell you that the things that we have in common is staggering for a disease that's considered hard to get, difficult to diagnose and easy to treat.
Typically, prior to getting sick, most were active and often quite successful in their chosen careers. About half got sick over a number of years and the other half hit the proverbial brick wall. On average we see over 20 doctors, have a variety of tests that generally lead to no answers. As a whole we look pretty healthy and our concerns are disregarded. We are told that we need to lose a little weight, start a hobby, or get some counselling and we'll be fine. Unfortunately that does not reflect our realities. Because we look healthy and our test results tend to fall within normal parameters, we quickly lose medical support, which eventually trickles down to our families and caregivers. Before we know it, we are told we are a burden and should just get over it.
Without medical support, it's impossible to get home care, disability pensions or any other type of support that should be available to Canadians that become seriously ill. Many of us have been told that we're wasting medical resources, sometimes even being yelled at by doctors for wasting their time. Wasting their time? How many times have we waited months and months to see yet another specialist and then hour or so waste-in the waiting room? And we're wasting their time? My heart breaks when I think of the number of children with congenital Lyme disease or those that contracted it playing outside. These kids spend their childhood in bed, fighting to continue their education and revelling at those rare days they get to attend a class. I'm horrified when people present with an obvious bite site, an embedded tick or even a full bulls eye rash, and their doctor turns them away with talk of ringworm, spider bites or being told not to worry, there's no Lyme disease here.
Some of these people manage to get a second opinion and the necessary antibiotics. But many tend to believe what their professionals tell them and they take no further action. Sadly all too often, I hear back from them later that they have these odd symptoms as they enter the world of chronic Lyme disease and its numerous co-infections. Due to the way this disease is handled in this country, we are a drain on the medical system. We tend to earn little or no income and therefore pay minimal taxes. Any spare money goes to healthcare. Collectively we have a negative effect on the economy. But as you will see, this is not by choice. It is critical that training for front line doctors and medical support personnel become a priority. The public needs to be informed about the risks, prevention and what to do if they get bit. Canada must invest in and find the best forms of diagnostic treatments and support for those with this horrible disease.
We need a "made in Canada" approach rather than following the status quo that is sending people into a debilitating life of misery. Our disability system needs an update to reflect the often slow decline of a Lyme patient. All too many people did not realize soon enough that they needed to apply for this and also the process is so complicated by design, but people with chronic Lyme disease are so cognitively challenged. Simple tasks become complicated, which makes the disability application process nearly impossible to successfully get through. We need compassion, understanding, support and a variety of treatment options. But more than anything, we need and want for no one else to become chronically sick because of lack of awareness. Finding a doctor in your area that knows more about Lyme disease than you do should not be harder than winning the lottery. Thank you.
So let me now invite Angie Allaire and then we'll (inaudible) Jennifer Armstrong. Thank you (inaudible).
Good evening everyone. Thank you for being here, thank you for sharing and thank you for understanding. My name's Angie Allaire from Summerstown, Ontario just east of Cornwall. Here's my story. My dreams before Lyme. Full-time teaching position. Small house in the country. Humanitarian aide. Children. Financial stability. In 2012, my dream started to unfold. Initial symptoms, unexplainable swollen right knee, still today. Unexplainable swollen right leg. Like everybody else, five orthopaedic surgeons over four years. My diagnosis at that point is suspected reasons, athletic injury, slight torn meniscus, autoimmune response in the body.
New symptoms start to arise. Medication and procedures that were done then, anti-inflammatories, cortisone shots, aspirations of the knees on so many occasions, rest, MRI, meniscal tear surgery - maybe that'll help. Physiotherapy, all out of-that was out of pocket. First rheumatologist. Suspected-well-or saw right knee hot, swollen with synovitis, rheumatoid arthritis. Routine blood work, prednisone, Sulfasalazine, Methotrexate, Naproxen, Vimovo, the list goes on. These are the Coles Notes' version. I adopted an autoimmune disorder diet to help, and then my first red flag. The rheumatologist said, "Have you ever been bit by a tick before?" My response, "I have no idea. I've never even seen one, but I camp all over Ontario every summer." He ordered the Lyme serology by-ELISA in 2013. No surprise, the results were negative.
New symptoms arose, including right ankle effusion, right groin pain, flare-ups, swelling, hospitalization, on IV, antibiotics. Decided to try a homeopath. She said I had a bacterial infection caused by a bug bite. $5000 worth of treatment, but I discontinued due to lack of funds, support and dismissal of diagnosis by my rheumatologist. Got another opinion and got diagnosed with seronegative arthritis and was told I should go on Biologic, which is thousands and thousands of dollars and wouldn't be covered for me. My new symptoms included nausea, weight loss. I lost 35 pounds over a year and a half. Anemia, general sweats, flushing, chills, fever, digestive issues, poor appetite, sinus pain, musculoskeletal muscle twitching.
Then saw a gynaecologist and a general surgeon. Suspected endometriosis or cancer. Right groin lymph node biopsy. It was benign. And that doctor, who was amazing, says, "You know, I think this is something to do with whatever's going on in your immune system." Finally saw a naturopath out of pocket and she suspected a bacterial infection, Lyme disease co-infections due to that. I had the Western Blot. She put me on immune and detoxification support, herbal medicines and some nutritional adjustments. I had some relief from sinus symptoms and fatigue, but I also felt like I was finally being heard. The Western Blot, positive for borellia bergdorferi -I can't even say it, but I know I have it. And Babesia duncani. I saw a medical doctor out of the U.S., of course as you all know, out of pocket, and was also clinically diagnosed with Bartonella.
Kathleen: Four minutes.
Angie: Thank you. Medication and procedure, antibiotic treatment with complimentary therapies, support from naturopath and dietary adjustments. A whole approach. My symptoms are slowly resolving. My sinus pain is gone. My post-nasal drainage is going away. My fevers are gone, I have no more chills and my energy is slowly increasing. And the inflammation is very, very slowly decreasing. One year of treatment, no more flare-ups or hospital visits in the last year. My new dreams. Education for Canadian doctors on recognition of bacterial infections that-Lyme. Oh, and I lost a slide. And the other one was support, financial support for all of those who are paying out of pocket. Like to leave you with one thing: I can do things you cannot. You can do things I cannot. But together we can do great things. And I really hope that that's where we go with this conference. Thank you.
Thank you very much, Angela.
Angie: Thank you.
Kathleen: Okay. So we'll hear now from Jennifer Armstrong and then Nicholas Arsenault. (Inaudible).
Thank you, everybody, for coming out and sharing your amazing stories. Hi Alison. I see a lot of faces of people I know. Part of that is because I'm a physician. And I'm crazy enough to treat Lyme in Ontario. But that kind of evolved. I started off as an environmental physician, which meant I looked at the big picture. I looked at food allergies, chemical sensitivities, toxic metals. And if I had patients that weren't getting better, I started realizing maybe I had Lyme patients. And my first Lyme patient that I diagnosed before I even became an environmental physician was back in 1991 when I was working in Niagara Falls. And I don't know why I ordered a Lyme test on her, but she was positive. She had acute arthritis, yeah. Almost all the joints of her body-postpartum. And so I had to look it up in a book. And, you know, there wasn't much on Lyme in 1991.
So the story was you treat it for a month on IV antibiotics. So she went to emergency every day and got IV antibiotics and got completely better in one month. But guess what happened after I stopped? It came back. So I sent her to see an infectious disease doctor in Toronto, who's actually in environmental medicine. He's our arch-enemy. And he said, "Oh, post-Lyme syndrome. Post-Lyme arthritis." And I wish I had known more about it back then to treat her longer. So in the meantime, I learned environmental medicine. I come back, and I start getting complicated patients. And I had learned to send them blood tests down to IGeneX, because I was not getting positive tests in Ontario, even though I got that one positive way back. And I started investigating, "Why am I not getting positive tests?" And one of the reasons, I don't know. Do you guys understand why you're not getting positive tests in Ontario?
It's because they took out the significant bands for you to be tested by because they used to use those protein bands to make a Lyme vaccine, which failed. And so because of that, we're not very easily getting positive tests in Canada. And so the infectious disease doctors here are-they just go, "Oh we don't know what test to believe anymore." Even though you can have a positive test with IGeneX by CDC criteria, they will not recognize it. Their main theme is they throw it in the garbage and then say, "We don't believe this lab because it's a for-profit lab." So those are the words that I'm tired of hearing. And I'm probably crazy. I don't really advertise that I practice seeing Lyme patients. I'll treat a patient for Lyme if they come in for something else and we happen to find out they have Lyme. It would be inhumane not to treat them.
Our biggest problem is it's really hard for me to get IV antibiotics. The hospital will not put picc lines in for me. So we have to send them up to Arnprior to get picc lines put it. And that can take 30 days to 60 days to get a picc line. But I find we get really good results when we treat Lyme patients because we're treating the whole person. We're treating every possible thing that could be making that person sick. We may be taking them off gluten. We may be taking them off other food allergies. We may be detoxifying them and making sure their house is clean. They're not living in a moldy house. Can't get better if you live in a moldy house. So we look at the big picture. And I noticed that neurologically, these patients will have really weird symptoms. They may have-normally in medicine, we're taught that a resting tremor is Parkinson's. But they may have a tremor when they're moving.
And the neurologists say, "Oh, that's fake." You know, they'll tell my patient, "You're faking that tremor." And they come to me crying and I know they're not. These people-you guys aren't faking it. Like, there's-who would want to fake being this sick? But that's how doctors in their ivory towers think of things. And if you look at the statistics, Jim Wilson taught me this, in Scotland they've had, like, a thousand times increase of Lyme in the last ten years. So they started a task force of doctors working with scientists. So we really need to do that here. But the other reason I got interested in Lyme is because I also got sick with Lyme back in around 1991 when I was living in Niagara Falls. Fancy that.
And I started realizing my brain was going. I got severe brain fog. I couldn't function anymore. And I lost weight. And I-that's when I started going into environmental medicine. And all the environmental things I did to learn about it, I got way, way better. But I found my patients got better faster than I did. And that's when it took me about another ten years to realize I actually had Lyme. So I started seeing a Lyme doctor in the States and going to the ILADS conferences and getting educated in the world of Lyme. And it's-if you look for it and you look for the symptom constellations, you will recognize it. It's not that hard. So we just need to educate the doctors.
(Inaudible) and then we'll hear from Brenda. Welcome (inaudible).
Thank you. Hello. Thank you for giving me the opportunity to speak here. As a child, if you grew up around little boys, they often ask each other, "What sort of super power would you like?" And someone says, "I'd love to fly." And the other says, "I'd love to be able to swim like a fish." And often you'd hear the answer, "I want to be invisible." And that was my answer. And well, I got that answer. I got that wish. I got that super power. And I got it at the hands of the medical establishment and I got it at the hands of social structures and apparatus beyond my control. Invisibility for me looks like doctors not wanting to see me. Invisibility for me looks like, "Yeah, but you look so good. You look great."
Invisibility for me is an insurance company following me, surveilling me. And it's kind of funny and ironic that that's what invisibility looks like. This is a situation that is deflating. This is a situation that removes my agency, removes my sense of self. I live with Lyme disease, as do many of you. And my story looks much like yours do. It's buzziness and waves of pain and achiness and immediate fatigue. It's panic. It's my body leaving my body. Losing my sense of body, losing my sense of self. It's my body whispering to me and it's my body sometimes screaming at me. It's tens of thousands of dollars and it's confusion. And I'm feeling better these days. And it's wonderful. But I do fear what's coming.
A year ago at this time, this week, maybe this day, I had a regression that lasted the entire summer. And I'm sort of waiting for it to happen again, but I also sort of don't want to give it the agency. I don't want to give it that power. And that's why it's almost difficult to be here, because we're talking about it. But I know it's important and I'm happy to be here. At the same time I feel like it's a privilege to have this disease and embody it. And that's a difficult thing to say and it's a difficult thing for many to hear. But it's a privilege for me because I can feel it. And many in my life don't. They don't understand the mental aspect of it. I deal with my body and I deal with the mental difficulties. But my wonderful partner, she doesn't get to understand what it's like. She gets to deal with the confusion and the reeling and the difficulties.
And my main point here that I want to talk about is the mental aspects. The mental health, the mental difficulties, the uncertainty and the fear that comes along with illness, that comes along with doors closing and darkness, that comes along with this invisibility and solitude. It's difficult. Is it physical? Is it the Lyme? Or is it this darkness? Is it these doors closing? I don't know. I was reading a doctor who deals quite a bit in indigenous shamanic traditions, and he said our last great freedom and our last great power in our lives is to choose our perspective and choose our attitude towards things. And I've been trying to do that. And I've been working with that idea. But it's not easy. And it's time now that we don't have to choose that last freedom. It's time that we have support and there's light.
There's illumination in this world of darkness that we live. The last-you know, when you're a kid, you also flip through the channels and you see this-all these older people talking in this strange room with big green chairs and screaming at each other. And you soon realize it's government happening. And for myself, you just-I remember just passing through it. But one of the days, months ago, years ago, I can't remember now, I went on to my computer and I watched parliament happen. And it was so emotional. It was the first time I felt solidarity and the first time I didn't feel invisible. And I was home alone and I was crying. And I was watching Elizabeth May speak. And I was watching MPs speak from all parties. And that's why we're here today, to shed light on this invisibility.
Thank you, Nicholas. So Brenda Barber, is Brenda in the room? Okay. Gwen Barley?
Kathleen: Okay? And then we'll hear from (inaudible).
Gwen: Me now?
Kathleen: You now.
Gwen: Okay. (Inaudible).
Kathleen: You're welcome.
Thank you. Hi, I'm Gwen Barley. And I grew up in Summerland in the southern interior of British Columbia. As a kid I spent a lot of the time in the bush with my dad. And after spending hours outside we'd go home and pick ticks off ourselves. And the ticks were especially bad in Grand Forks. And in fact, my aunt Beverley almost died after she was bitten by a tick there and became gravely ill with tick-borne paralysis. And the only reason she didn't die is that they found the tick in her groin and they managed to pull it off. I was in grade six when I came down with a severe flu-like illness in June, with very swollen lymph nodes and an extremely swollen and arthritic right knee. Doctors had no idea what was wrong with me, but after that my health was never the same.
Over the years I had migrating arthritis, tinnitus, chronic sore neck, swollen joints, problems with my short-term memory, extreme fatigue and a host of other symptoms that would wax and wane for no apparent reason. I managed to get by until I was hit by a car about 20 years ago. And then my symptoms intensified to the point that I couldn't sit through a university class without falling asleep or even unscrew a jar lid because my arthritis was so painful. I had no idea what was wrong with me and neither did any of the doctors I saw. Fortunately at this point someone said it sounded like I had Lyme disease, and I'd never heard of that. And at that time I was lucky enough to be referred to one of the few Lyme-literate doctors in Canada. And after a thoughtful two-hour examination, he clinically diagnosed me, as he's supposed to do, with Lyme disease.
However he retired shortly thereafter and I was left to fend for myself, meeting doctor after doctor who said, "We don't have Lyme disease in British Columbia," and, "Lyme disease is a disease-du-jour." And sadly my story isn't unique. In our patient support group in Vancouver, we have a member who while hiking on the west coast trail developed a bulls eye rash in his belly button. A person who while camping in Elson came down with a severe case of summer flu after being bitten by a tick. My office mate who became ill with chronic fatigue after camping at Point Pelee National Park. And my best friend, a veterinarian who became sick after doing waterfowl surveys in Manitoba and getting covered in black-legged ticks. Every one of these patients was denied treatment through our medical system because they tested negative on our flawed blood tests, despite being bitten by ticks and displaying classic Lyme disease symptoms.
No doctor had the courage or knowledge to diagnose them clinically as recommended by Health Canada. As an aside, I'd like to say a few words about the blood test. Lyme disease is a borreliosis infection. In B.C., we have three known novel strains of Borrelia, plus Borrelia hermsii and likely Borrelia miyamotoi. Yet the blood test used on patients in B.C. don't have the ability to pick up any of those strains. Doctor Nick Ogden with Health Canada has acknowledged that the genetic diversity of Borrelia in Canada could have consequences for disease severity, clinical symptoms as well as the performance of diagnostic tests. Yet doctors across Canada still erroneously insist these tests are 100% accurate post six weeks of infection. As a result of lack of care, patients have had to become health advocates. In B.C. we formed the Vancouver Lyme Disease support group over ten years ago. We've held rallies, put on educational seminars, spoken to politicians, given media interviews and worked relentlessly to raise awareness about Lyme disease.
After five years of activism I decided to file an FOI, and that's a Freedom of Information request. And you're entitled to documents that governments don't want you to see. And I filed that FOI with the B.C. government regarding their management of Lyme disease. What I discovered was that they'd commissioned a secret confidential report written by Dr. Brian Schmidt, who at that time was a senior vice president with the provincial health services authority. And what his report found was staggering. And I'm quoting here, "The majority of GPs lack knowledge about Lyme disease. Testing is poor. Better testing is needed to prevent progression to a chronic disease. There's no treatment for Lyme disease patients in-especially chronic Lyme disease patients in B.C. The true incidents of Lyme disease in B.C. is unknown. And the current state of diagnostic methods for chronic Lyme and other related infections is inadequate."
And that was their own expert. Within 24 hours of the report being made public and given wide media coverage, the B.C. government announced the complex chronic disease program would be established with the primary purpose of treating chronic Lyme disease. The program opened in 2013, but it became apparent quickly that patients weren't being treated for an infection unless they tested positive in flawed blood tests, even though the clinic says the diagnosis of Lyme disease should be a clinical one. If patients were lucky enough to test positive, treatment was severely limited despite the fact that there are scores of recent scientific papers showing persistence of infection past the standard three-week course of antibiotics recommended by the IDSA.
Not surprisingly, doctors began to leave the clinic. And with one brave doctor going public with her concerns saying, quote, "I am one of the doctors who left the clinic because we were unable to adequately test and treat Lyme disease." Lyme disease is exploding across the country and we need to develop a plan, a meaningful plan, to deal with that. Right now we are at a fork in the road. Will we continue to defend the status quo and deny Lyme disease patients the diagnosis and treatment they desperately need? Or will we recognize that we can do far better and move past dogma and entrenched positions to embrace new science, improve diagnostic and treatment practices and work in true partnership with patients? The choice is ours, so let's choose wisely. Thank you.
Okay. So next we have Sadie Barnett, and then (inaudible). Welcome, Sadie.
Thank you. Hi everyone. My name is Sadie Barnett, and I would like to start off by saying thank you for sharing your experiences here today. I know it's not easy. I was bit by a tick four years ago while working at CFB Petawawa, my hometown, performing landscaping duties as a summer student. I was diagnosed with clinical late stage Lyme disease nine months ago. When I first started preparing this speech, I started writing about my myriad of agonizing symptoms, my neurological deterioration and the hardships that I endured with doctors and specialists. I realize, like, I was writing like I had to defend myself. How sad that that is my conditioned response. So let me be brief. I am suffering. My quality of life is diminishing. I am not receiving treatment. I am scared and I am angry.
I began my Masters in public health at Lakehead University before receiving my diagnosis. And one of my professors said something that truly resonated with me. "We are not here to teach you about the health care system. We are here to teach you how to critically appraise the policies and programs, especially within the context of the social determinants of health." And I hope that is what is going to be done at this conference. I cried of happiness the day I was diagnosed. I finally knew what was wrong with me and according to all the regulatory body websites, it was just a quick dose of antibiotics and I would have my life back. I had no idea that I was about to embark on a controversial medical journey from hell. To summarize, my referral was denied by infectious disease after a six-month wait.
I was accused of essentially making up my symptoms and told that there was nothing clinically wrong with me, despite having many clinical manifestations. It's funny what the term Lyme will do to your credibility. But still I found myself continuously defending our healthcare system until now. Until now, when I have exhausted all options available to me. My story is not an isolated incident. We are talking about a shared experience across the nation affecting thousands of Canadians. And let's once again not ignore the biggest elephant in the room, that across the globe people are being treated successfully for late stage Lyme disease. Are we going to be the country that lags behind or are we going to take the opportunity to become leaders and put an end to the undue financial burden placed on Lyme disease sufferers who have to result to medical tourism?
When an individual is studying the ins and outs of the Canadian healthcare system, can't even navigate their way through that system or get a proper diagnosis or treatment of an infectious disease, we should be shaking our heads. How many Canadian lives have been wasted? How many more need to be wasted? Stop wasting my life. My life has value and it has meaning. Stop viewing me as a statistic or a burden. It is often said that history repeats itself and that people fear the unknown. How true these statements are when it comes to Lyme disease. HIV, mental illness - both have faced stigmatization from the medical community and those afflicted have been subjected to marginalization all because we did not have a clear understanding of those conditions at that time. Now we can't even believe we once treated those people in the way that we did or that we believed the initial evidence-based claims about those conditions.
It is my hope that very soon the stigmatization of Lyme disease will be another lesson learned in public health and occupy the paragraph of a textbook rather than another newspaper article, blog entry or parliamentary bill. I would like to remind everyone of a very important document called the Canada Health Act. In it, chapter 17 highlights the two primary federal objectives. One, to ensure that every Canadian has timely access to all medically necessary health services regardless of his or her ability to pay for those services and two, to ensure that no Canadian suffers undue financial hardship as a result of having to pay healthcare bills. These objectives are certainly not being met when it comes to Lyme disease sufferers.
You'll find that many people speaking of their experiences here today are not claiming to know the solution. We're just here to tell you that it's simply not working. We have one of the greatest health care systems in the world and a public health agency that protects the lives of Canadians on a daily basis. But to continue to be great we need to be continuously questioning and investigating our methods, especially when there's an overwhelming amount of people suffering. Suffering physically, suffering emotionally and suffering financially. This conference is allowing the members of the Lyme disease community, the Public Health Agency of Canada and all relevant stakeholders the chance to take two steps forward. Let's not take one step back. Thank you.
(Inaudible). And would you like to …
Female: I don't know what to say.
Kathleen: Sorry, I'm not (inaudible)-I'm just trying to figure out.
Female: Oh, I'm sorry.
Kathleen: No, it's okay.
Female: Where's the sound coming from?
Kathleen: From (inaudible).
Female: Behind the podium and I'm worried that it's going to affect the sound quality of the tape.
Female: Is it me?
Female: Yeah, I think it's you.
Female: It's probably me.
Female: Oh, I'm so sorry.
Female: It's her oxygen.
Female: Okay, no. Turn it off. Yeah, that's okay.
Female: I'm sorry.
Kathleen: I don't know if it was affecting the sound quality at the back. No?
Kathleen: It doesn't sound like it was affecting the sound quality.
Female: Okay. Sorry. (Inaudible).
Kathleen: That's okay. That's okay.
Female: I have it on all the time.
Kathleen: But it sounds like it's okay. It sounds like it's fine.
Kathleen: Perfectly fine.
Kathleen: It's a good thing to check. Good thing to check. Okay. So thank you so much, Sadie. Okay. Beverley Bateman and then we'll hear from Jessica Bell. (Inaudible).
Good evening everyone. Thanks so much for sharing your stories. My name is Beverley Bateman. I live in Toronto where I have a family and I'm the owner of a small animal veterinary clinic. I've had experience with Lyme as a patient myself, as a patient advocate in Ontario and also through my professional work as a veterinarian. My personal health story is similar to many of those that you've already heard tonight. I believe I was infected with Borrelia when travelling in 1996, but was not diagnosed with Lyme and other tick-borne illnesses until 15 years later in 2012, by which point my symptoms were life-altering. Prior to my diagnosis I spent countless years seeing endless specialists in Toronto, Guelph and Ottawa with no results. In the end my diagnosis came from a doctor in the United States and treatment with antibiotics worked immediately to start to reverse the symptoms.
I was lucky enough to find the answer, and this restored my ability to function as a wife, mother to two boys and a small business owner. In thinking about how to approach this tonight, I decided to focus on two perspectives that might be different from those brought forth by other patients. The first is a comment that arises out of advocacy work that I do with a group called the Ontario Lyme Alliance. Through this I've had the opportunity to attend meetings with healthcare professionals and health policymakers in Ontario. Personally it seems to me as though health practitioners and health policy teams are overwhelmed by the complexity of Lyme disease and the controversies surrounding testing and treatment. Admittedly, it's a very complicated issue. Lyme is difficult to diagnose. Due to the variety of symptoms, there are limited options for testing a patient. Once the diagnosis is made, treatment and patient management are an area of contention and they likely will be for a number of years.
However, and again, this is my personal opinion, it seems as though policymakers are unwilling to tackle the task. I try to think of this in the same way I might approach a complicated patient at my animal hospital, an animal with multiple issues. The key to managing a complicated problem is to work systematically through all of the issues while balancing which may be the most important at any given time. I hope that this conference and the creation of a national framework will allow us to break the issues surrounding Lyme into manageable chunks. Our medical community needs to look at up-to-date research and protocols that work for patients and they need to create programs to assess testing and treatment methods from around the world. Although it's complicated, it needs to be done.
The second perspective I wanted to bring you this evening arises from working with the issue of tick-borne illnesses and Lyme disease professionally through my work as a veterinarian in Toronto. Although my veterinary clinic is in the center of Toronto, which is a tick-free area, we have been performing routine screening of dogs for exposure to Borrelia and other tick-borne illnesses since 2010. Each year approximately 2% of our dog population is positive for new exposure to the bacteria that causes Lyme. If we see clinical signs of concern in these dogs we will initiate treatment and we see good responses. My veterinary colleagues and I are one group on the front line of this issue in Canada. Policymakers need to look at how to utilize the information coming from pets or livestock in areas with ticks.
The other key point to make is that there's a big difference right now between the vets and the human health practitioners. And that's the number of resources, good resources, about Lyme available to each group. I have access to training tools about ticks and Lyme from my clinic team and clients. I have ample opportunities for continuing education on this topic. I have algorithms to help me when I see a dog with a tick or have a patient with a positive Lyme antibody test. And I have the professional attitude to treat a patient as I see fit after consultation with that pet's owner. I know the veterinarians do not have this issue figured out correctly, but at least we're working together to educate each other, educate the pet owners and we're discussing the issue in a uniform way with adjustments over time as information changes through research.
So the question I'll leave this group with is one that's come out of my experiences and one that I've repeated many times during these meetings in Ontario. And that is, "Why is it that in many jurisdictions in Canada, dogs are being cared for better with respect to Lyme disease than the people are?" That is the reality and we need to change it. It needs to happen systematically and quickly, before more and more Canadians are too sick to recover from this illness. Thank you.
Is Jessica Bell here? No? Okay. Alison Bested. Welcome, Alison. And then we'll here from Nicole Bottles.
It's a pleasure to be here tonight. My name is Dr. Alison Bested. Just to let you know my background. I'm a hematological pathologist by training, which means I was cross-trained in a bunch of things, in hematology, which is blood, both clinical and laboratory, oncology, genetics, immunohematology and anatomic pathology. From the clinical and laboratory training that I received, I have a unique perspective about both clinical and laboratory side of Lyme disease. For the past 25 years I have had a medical specialty, a practice devoted to the care of patients with complex chronic diseases, including myalgic encephalomyelitis or chronic fatigue syndrome, fibromyalgia, multiple chemical sensitivities and Lyme disease. There is a huge overlap of symptoms between these complex conditions, and today in this conference we'll focus on Lyme disease.
What makes Lyme disease distinct? We know so little about the illness, and this conference is our opportunity to explore about Lyme disease. Lyme disease as we know is caused by a bacteria, Borrelia. We get infected with Borrelia after we are bit by a tick who carries it within its body. In Canada, many have become ill with Lyme disease. We don't know how many for a variety of reasons. We know that over time and with climate warming, the numbers of ticks are increasing and the number of patients with Lyme disease are increasing. The U.S. estimates by the CDC estimate 300,000 people have Lyme disease. Our population's 10%; does that mean we have 30,000 patients? We don't know. Patients want to get better and have access to knowledgeable physicians who understand about Lyme disease. It's difficult for patients to find doctors to treat them in Canada.
I'm here with the hope that we can come to an understanding that we know so very little about Lyme disease. We have limited knowledge about co-infections that occur with Lyme disease and their interactions. I remember as a student, as a resident in Toronto where I was trained, that we had young men come in and they were homosexuals and they had a bunch of funny infections. And we were seeing them under infectious diseases, and they had sore throats and swollen glands, and we just didn't know what to make of them. Until a few years at the end of my training, I saw the first autopsy for an AIDS patient. We had no idea what it was. It was a young man, well-muscled. He died. He had red skin lesions all over his body that were characteristic of skin cancer in an old man. He was the mystery. It ended up being HIV-AIDS.
So we've seen the evolution of illnesses in my time alone. This is the latest illness that we need to explore. I'm here with the hope that we can come to understand that we can figure out what this Lyme disease and what Borrelia is all about. We figured out AIDS. Now we know the most difficult thing is treating the toxicity for AIDS. We can figure this out. I hope that this conference will explore ways to prevent Lyme disease from occurring when people have been bit by a tick. I hope that we'll explore all the clinical problems that are related to Lyme disease and look at the potential treatment options for patients who can be extremely ill and bedridden. This conference is a huge opportunity to learn from researchers, clinicians, laboratory specialists, the Public Health Agency of Canada, veterinarians and especially from the patients who suffer from Lyme disease.
It's an opportunity to create a new paradigm and also to create working networks that include all of these people and to more fully understand about Lyme disease, Borrelia and its co-infections. With the suffering that I personally witnessed from my patients who have Lyme disease, as a clinician it is my role to advocate for better patient care and improvements in our health care system for Canadians who have Lyme disease. This conference is where the rubber hits the road. This is the next step. Just as AIDS research was funded, Lyme disease needs funding. We have the scientific tools to do the research. We need to use the money to go forward. This Lyme disease conference is the opportunity to make the necessary changes in our thinking to help Canadians who suffer with Lyme disease. This is my hope.
(Inaudible) right? On education materials and raising awareness. Excellent, thank you. Okay. So I think (inaudible)-is Nicole in the room? And then we'll hear from Ben Boucher. (Inaudible).
Kathleen: Do you want to use this mic or that mic?
Nicole: Well I think I'll be kind of invisible.
Kathleen: You will be. And we don't want that.
Nicole: No, that's why we're here.
Kathleen: Exactly. So here, sit next to me. And you want-do you want to hold the mic or do you want …
Nicole: I can hold it.
Female: I think (inaudible).
Nicole: Thank you kindly.
Kathleen: I'll sit next to you.
Thank you. Hello. My name is Nicole Bottles. I'm 23 and from Victoria, B.C., and a board member of the Lyme Disease Association of British Columbia. And I would like to tell you how I ended up rolling in here today, eight years after my initial diagnosis. And it all begins with a tick the size of a poppy seed. My story reflects the experience of many Canadians who follow a similar journey. A mysterious illness, multiple specialist visits, extensive lab work, and culminates, possibly years later, with misdiagnosis or no diagnosis at all. Tragically, delay in treatment gives the Borrelia time to disseminate and making it more difficult if not downright impossible to treat and eradicate. In 2008 I was a healthy, straight-A student. I loved my school and choir, hiking and kayaking.
It took several months and one tick bite to change all of that. During my grade ten year I never recovered from a prolonged flu-like illness. Not having the strength to get out of bed, even for an hour of school, was one of the hardest and scariest realizations of my life. I went downhill very quickly. And within a few months, required a wheelchair and experienced intense chronic pain, swollen joints, exhaustion and severe short-term memory and cognitive impairments. Trips to many specialists and diagnostic tests were fruitless. By chance we learned about Lyme disease and the host of seemingly unconnected symptoms made sense. The symptoms I developed were classic manifestation of Lyme disease and I was so relieved. I thought, "Now all I have to do is get quick treatment and I'll have my life back."
Well needless to say, eight years later it's not that simple. I had a negative Lyme test result, like so many Canadians. And versus making a clinical diagnosis, most doctors rely on this flawed lab test to diagnose Lyme disease. If someone is diagnosed and treated immediately, $100 of antibiotics should see them return to health. The cost of my own treatment has been well over 1000 times that amount. And I'm one of the lucky ones who was able to seek the guidance of four leading U.S. experts. Friends, family and my community donated at fundraisers to support my treatment outside of the country, which isn't covered by our healthcare plan. A 2006 study from the U.S. CDC by Zheng (inaudible) who we are very fortunate will be speaking later, found that the annual burden of disease, the BOD, when Lyme was treated early, was under $1500 for only one year.
If the illness was left untreated developing into a chronic infection, the BOD jumped to $16,000 per year, every year. The cost of being misdiagnosed is astronomical for our healthcare system. The cost to patients could be their lives. Our nation is on the cusp of creating a paradigm shift in the way we confront Lyme disease. And time is ticking as our communities encroach on wildlife habitats and the climate changes, leaning to an explosion in the tick population. The National Lyme Disease Framework has the potential to be the catalyst for change. It's already brought us together, patients, advocates, physicians, researchers, public health officials. Through reconciling the two standards of care into workable guidelines we can transform a static situation into a constructive environment for patient care.
I could talk about the need to rewrite the diagnostic algorithm, invest in active surveillance and address limitations of testing and physician awareness. But the overarching theme echoed today is concise. Education, prevention, treatment and testing. Simple enough in practice to implement. However patients continually battle a stigma every time we walk into a doctor's office, which is why we need strong leadership and open-mindedness from all of us here in order to move forward. We have been extremely patient. But as more and more Canadians fall ill, our community feels a sense of urgency to ensure that others don't have to experience the devastating effects of not only losing their quality of life, but struggling to receive treatment. We must do better. And we're optimistic, but this chance to work together for the well-being of all Canadians will finally commence an era where a walk in the woods is not a debilitating activity. Thank you so much.
Hi, I'm Dr. Ben Boucher from Nova Scotia. As a physician who treated vector-transmitted infections for seven years, it's interesting to hear stories here that when I hear them, I think, "Gee, that sounds like Borreliosis or Bartonellosis or Babesiosis," common vector-transmitted infections. Just hearing those symptoms is enough for me to recognize the possibility of those infections. I wasn't at the top of my class in med school, but I learned how to differentiate these infections. It shouldn't be that difficult for other doctors to get educated and do the same. My presentation is about one of several anonymous cases that I could present, but I will just present one that illustrates my and your frustrations. Although I discontinued practice in 2013, I was contacted by a few patients to see what I could suggest for them. I subsequently wrote to their attending doctors.
This letter was written to a neurologist regarding a 27-year-old patient of his that I had seen previously. His history was such that he had in 2009 sudden onset of crusty lesions in his scalp, blurred vision in his left eye, numbness around his mouth, recurrent sore throat, sweats and nosebleeds. He had a history of being outdoors a lot as a late teenager, with his dog often covered by ticks. When he presented to my office in 2011, he was 24 with the above complaints, plus an enquiry, flushing, excessive thirst, temperature intolerance, scatter swollen glands, brain fog, anxiety, irritability, anti-social behaviour, fear, slurred speech, pressure at the top of his head, pain behind his eyes, neck stiffness, facial muscle weakness, dry cough, air hunger, heart palpitations, vague chest tightness, tinnitus, blurred vision, light sensitivity, etcetera, etcetera, etcetera.
His physical examination only revealed the crusty scalp, generalized muscle weakness, poor balance and extreme difficulty walking. He had had a test a couple months before I had seen him, a brain MRI, which showed multiple periventricular lesions, which can be present with an infectious process if the radiologist knows enough to recognize it. In May of 2012, he had another brain MRI which was essentially the same as 2011, but with resolution of some lesions. Having been on treatment, this was interesting to see. Subsequent office visits-at first visit he was felt he may have Bartonella infection. He was started on Abba, an herbal preparation. When seen two months later, he had generalized decrease in some symptoms, more energy, much less tremors and was walking much better.
He was continued Abba and started cipro 500. He had a herx reaction, which means getting worse subsequent to the toxic effects of the breakdown of bacteria. Then he improved and was able to walk again. And then he regressed. He was placed on another antibiotic, two, rifampin and doxycycline and more herx reaction. And his doses were decreased. He was subsequently treated for possible Babesia and Borrelia. He was last seen in August 12th-August 2012 due to financial and other reasons. This letter-in this letter to his neurologist, I said, "I have assessed and treated, when indicated about 200 people, most from Nova Scotia and New Brunswick, for possible vector-transmitted infections. I attended conferences, I learned about MRIs, I learned how to recognize these infections. And studies show that of 75 patients I treated, there was an excellent response. I felt that there was more Bartonella infection than actual Lyme disease."
Anyway, I wanted the neurologist to review his case and to decide whether he could be treated with antibiotics as I felt he should be. In the fall of 2012, he was admitted to hospital with progressive MS. The letter I sent to the neurologist on June 2015 was unheeded. I met this young man at a church in a wheelchair. He stated he was essentially bedridden. I called the doctor's office at least six times since I sent the letter, and never received a return call. On my last call, I left the message, "RE: I guess an autopsy will reveal cause of death, sadly."
Thank you, Ben. So we're going to hear from Mandy. Is Mandy Boulay here? Thank you Mandy. And then Gwendolyn Burke. Would you like to use the microphone?
Mandy: Yeah, if you can hold it.
Male: (Inaudible) the mic stand.
Hi, my name is Mandy Boulay. I'd like to dedicate this speech to a very dear friend, Gary Glazer, who passed away a few days ago from complications of Lyme. Yes, Lyme can be fatal. I have severe cognitive and memory issues, so I have written down my speech. My illness began at age 17. I am now 43. I was initially infected some time in 1986. Almost overnight, my personality changed. I began experiencing panic attacks, extreme fatigue, major anxiety and depression and cognitive issues that eventually led me to developing agoraphobia. I understand now that I was stricken by a form of neuroborreliosis. My current MRI states over 40 brain lesions and severe demyelination of the brain. MS has been ruled out. Canada has the highest rate of MS in the world, and the lowest rate of Lyme disease. Lyme can mimic MS and a lot of other diseases.
Sometime in the spring of 2011, I recall having a doctor's appointment and telling my doctor of a rash on my upper thigh. She told me it looked like an infected spider bite. It was not a typical bulls eye rash. It was a small raised red oval rash. I thought nothing of it. At the end of October, six months after the rash, I fell extremely ill. Within a matter of weeks, I was experiencing severe joint, muscle and bone pain, tremors and cognitive issues, numbing and tingling throughout my body, partial paralysis, vision problems, burning sensations that would migrate from one part of my body to the other, difficulty walking, thinking and unrelenting fatigue. I was admitted to hospital. My case was extreme. I honestly thought I was dying. As I lay in hospital for several weeks, my doctor working diligently trying to figure out what was wrong with me, at no point was Lyme in question. All tests came back normal.
My sister drove me from my small town up north in Sturgeon Falls to Kingston in hopes of a diagnosis. The first doctor I seen at emerge at KGH suspected Lyme disease. He gave me 14 days of doxy. Within five days of taking the antibiotics, most of my symptoms had diminished. He tested me for Lyme, which came back negative. I believe antibiotics saved my life. I was ultimately tested through IGeneX in the States. The tests came back Centers for Disease Control positive, with almost every single band positive. I was re-infected with a more virulent strain. I seen many Canadian infectious disease doctors that denied me treatment. One in fact would not even see me as my Canadian test was negative. I was forced to seek out an LLMD in the States and pay out of pocket for medical treatment.
After four months of oral antibiotics, I was doing quite well. About a month after stopping the antibiotics, I relapsed. I continued for two years on and off IV and oral antibiotics, relapsing every time I stopped treatment. I begged Canadian doctors to help as I could no longer afford out of pocket treatment, and I was denied care. It's been over two years since I've received antibiotics and my health has deteriorated to the point of mostly bedridden. I am here today but I am heavily medicated with strong pain medication. My son has tested CDC positive as well. He has been denied treatment in Canada. He has congenital Lyme disease. He has been treated by Dr. Jones in Connecticut for a year. He is currently doing well. Again, I pay out of pocket for medical costs.
Lyme should be a clinical diagnosis. It can present in many different forms. Most people do not get a rash. We need accurate information given to the public. We need doctors to be educated. An early diagnosis. An early treatment. We need doctors to learn about disseminated Lyme. It is estimated by the year 2016, 80% of Canadian population will be at risk for Lyme disease. 41% of ticks tested in Kingston are positive for the bacteria. Signs should be put up in known endemic areas. We need accurate testing to show the true numbers of the disease. Had I been diagnosed and treated early properly, I would not be in the position I am in now. My family, especially my children, have suffered tremendously as they watch their mother's health (inaudible). Lastly we need to find a cure for late stage Lyme.
(inaudible). And then we will hear from Suzan Cassidy.
Sorry. Hi. I'm Lynn Burke. I'm from Delta, B.C. I chair the Simon Fraser Long-Term Disability Caucus for the B.C. Nurses Union. Like many others, I went to my GP with a EM rash. I was told it was a spider bite. Six months later I was diagnosed with MS. Five years of MS drugs did not help. I was mostly bedridden and knew I was going to kill myself. I finally remembered having the rash. When I looked up the symptoms of Lyme disease, I had 72 of 75 of them. My GP tried five times to have me tested but said he was given so much grief by Dr. Morshed at the B.C. CDC that even if the results were positive, he would not treat me. He added he was unable to get Infectious Disease doctors to accept his other Lyme patient, despite many referrals.
My neurologist (inaudible) Lyme as an explanation for my symptoms. She applied for out of country coverage for medical treatment for me and said, "You need IV antibiotics and don't stop until you get them." The MSP rep said they received numerous applications and like mine they were all turned down because Lyme disease is such a controversial disease. I also got no response from the Infectious Disease doctors when I was referred both by my GP and my neurologist. Finally I asked a former colleague to speak to one of the Infectious Disease doctors and ask them to see me as a personal favour. He agreed. In his consult he wrote, "Dr. Morshed said you cannot read her Western Blot because some of the bands have been erased." This left me with less than some of the required bands to qualify as a positive for Lyme disease in B.C. The bands, if you include the erased ones, did line up with my results from IGeneX, but that didn't help me.
Incredibly Dr. Morshed refused to repeat the Western Blot, saying I had already been tested. Where's the logic and medical ethics in this case? Sorry. Later I had pneumonia so bad that when I was in emerge I was told I had to be admitted because my lungs were filled with nodular opacities. It looked like I had lung cancer and I needed a lung biopsy as soon as possible. Day two, an emerge doctor came and asked me why I'd been on antibiotics before being admitted. I admitted I was being treated for Lyme. The next day he came in and said, "Good news. I can tell by your x-ray you are improving. You can go home." But I hadn't had an x-ray. I was still happy to be home, because hospitals are the worst place. You don't want to be there. So-but unfortunately it took another month to get the biopsy because I was now an outpatient.
My respirologist sent a sample of the lung biopsy to the National Lab in Winnipeg for testing for Lyme disease. Dr. Morshed called him insisting the two-tiered blood test is the gold standard for Lyme testing. My respirologist persisted and Dr. Morshed finally agreed. We were appalled to learn that the sample was not sent as requested, but rather held back at the B.C. CDC, and there Dr. Morshed tested the saline washings, the salt water used to rinse my lungs out, not the tissue samples that were submitted. When I called the College of Physicians and Surgeons to lodge a complaint, I was told that Dr. Morshed is not a medical doctor. He's a microbiologist. He's not registered with the College of Physicians and Surgeons. You cannot make a complaint against him. This man should not be directing patient care. This is practicing medicine without a license.
This is just one more example of political interference, the denial, inadequate testing, misdiagnosis and intimidation that comprises the bullying that chronic Lyme sufferers are subjected to. Lyme patients in B.C. are as tired of the status quo, falsified test results, calling positive test results false positives, and going out of their way in what seems to be personal agendas to restrict patients from medical care. Studies set out to perpetuate the myth of low infectivity in B.C.-but if you read the limitations of the study, they were set up to fail. We need a change in the paradigm. The status quo is unconscionable.
We need protection for our doctors who do treat us. We need stakeholder input to the new guidelines, not just patent-holder input. We need a CDC to stop promoting guidelines that are no longer valid. There is only one set of current guidelines, and patients are getting cured by doctors following those ILADS guidelines. I'm one of the lucky ones. Additional antibiotic treatment is helping me, even though it's many years, more than a decade, after my last infection. Please reread the preamble to Bill C442. I can't put it better than that. Thank you so much for this opportunity.
So we'll hear now from Suzan-Suzan Cassidy. And then Bev Aalbers (inaudible).
Suzan: Can I use the (inaudible).
Suzan: Actually I'm going to request not to be photographed or camera.
Kathleen: A request not to be filmed.
Hello. I didn't prepare anything. I don't have the mental capacity to, you know, do more than a few sentences. Chronic fatigue, fibromyalgia, cluster migraines, anemia that requires iron infusions monthly, zinc depletion, you name it, that's what I'm diagnosed with. I'm not diagnosed with Lyme disease, but I'm sure this sounds familiar to everyone. What's the treatment for what I have? I can get a pot prescription now. But why am I here today? I'm not here to talk about myself. I'm here actually to talk about my son who in summer of 2013-sorry, this may get emotional for me. I believed he had meningitis. He was stiff as a board. He had a fever. He was barely responding. It scared the living daylights out of me. I rushed him to emerge here, Children's Hospital. I was told he had a virus and he should just go home and rest.
It was 30 degrees outside. Everyone was swimming and having fun. Three days went by and he got worse. Every minute I turned around he would be asleep. Again brought him into CHEO. Well they said it was probably an inner ear infection from swimming in a pool. From that point, like many people have said, his symptoms just multiplied. The diffuse joint muscle pain, that was first to come. The instant change in personality was really hard to watch as a mother. So finally after his GP not listening, "Why is my kid sick? Why is my eight year old son continually getting sick?" We switched doctors. We were just lucky that someone happened to run a blood test that showed a positive ELISA test. We were told he had Lyme disease by the GP. We were referred to Infectious Diseases here at CHEO. And that period of time was very timely for me.
Elizabeth May presented her Bill. I went in not knowing very much about Lyme. That's some people in the community and was told, "They will deny you." So I went in knowing. When we went to Infectious Diseases right away, they looked at everything. I said, "Well what about Lyme?" "Lyme does not exist here in Ottawa, miss." "Well my sister lives in Oakville. We were in Kingston for a weekend. We camped for a festival in Guelph." "No, not a possibility. We'll test him again if you like, but he probably doesn't have it. We'll test for West Nile, we'll test for a bunch of stuff." "Oh we notice that he has a curvature to the spine so we'll refer him to a scoliosis clinic." Well scoliosis clinics, great. He has a little bit of a spine curve. But that's not explaining the joint pain. Back to rheumatology. We have seen seven specialists. He has a fatty liver. The kid is 60 pounds.
The final written report from Infectious Diseases, I asked them to mail it to my home, came highlighted in highlighter marker, two lines saying, "Not Lyme disease." What his diagnosis from Infectious Disease was, suspected under-diagnosed viral meningitis. That is why I brought him in. He is now diagnosed with chronic fatigue syndrome. We cannot afford-I'm here representing the people that cannot afford to go to the States. I'm a single parent. I cannot afford to bring my child to the States and that's just-I've had to accept that. But over the last three years-because it'll be three years this July. If it had been meningitis, he would not still be sick. Again I, like many people here, sent off the test to the States. That came back positive. But no one is willing to help us. We're both sick. We're both chronic. And I'm hoping that this conference will recognize people living with chronic fibromyalgia, chronic MS. It's been hinted that I have lupus. All these things are connected and we need treatment. Thank you.
Hi. My name is Bev. First off, I'd like to show you nine months of healthcare. No diagnosis. Nothing. Lost weight. Almost death. Failure to thrive, that was my diagnosis. A storm that ravaged my body that was not detected. Countless tests for multi-systemic problems. Over a nine-month period I had countless trips to ER for food anaphylaxis, no prior allergies. I went to a heart specialist, a gastro, neurologist, allergist countless times for blood work, CT scans, MRIs. Many, many ER trips in debilitating pain. Family doctor, weekly struggling. He called it failure to thrive. Weight was falling off me, despite being menopausal. Imagine. I was down to 100 pounds. No reason. They couldn't figure it out. He even gave me a test for Lyme disease, which produced a false positive.
After nine months of this bacteria ravaging my body, I could no longer work, like most of us. I was put off work by my family doctor. He offered me a psychiatrist. I agreed, because I thought, "Wow, no diagnosis? I must be crazy." The psychiatrist looked at me and sent me back to my family doctor. My family doctor stated he had done absolutely everything for me. There was nothing more he could do. He said, "You are fine." The problem was, like you guys, I was not fine. With this I knew if I wanted to live, I was so ill-I went down hard and fast. I would not have survived. I'm not quite sure what kind of bacteria I had, but I don't think I would have survived the one-year mark. I went to a naturopath. She helped me with my nutritional needs and sent my blood off for testing in the U.S. for Lyme. It came back positive, high markers.
With this I went back to my family doctor with the results. He stated, nothing that he could do. At a loss with the current system, I searched for a doctor in the U.S. that specialized in Lyme. I found an excellent doctor who started to treat me three years ago. Within six months I returned to work. Within nine months I returned to work full-time. I have endured multiple, multiple antibiotics, supplements, diet change, all organic. I have functionally improved 80%. I have damage from being ill and will continue to prove this. I have hope now, as I had no hope with the current system with Lyme in Canada. I ask today, if it is science that is needed for better testing, we'd best get to it as soon as possible so Canadians do not need to endure the needless suffering. Have Lyme disease on the radar as a possible reason why you end up in the ER.
Doctors trained for signs of Lyme disease. Not four weeks worth of antibiotics. Treat the patient until he or she is well. It is called quality of life. I would do it all again despite the risk. I am one of the people that have endured the current system. It has failed us. It is cruel to the person suffering. In closing, I would like to say that Lyme disease has cost more than $100,000 to treat, my husband's and I's retirement. Could have all been stopped in its tracks with a proper test and clinical diagnosis. Treatment in early stages. We need to look for it. When you arrive at a hospital or get a flu, the doctors need to know what they're doing. I am now pretty much cured. I'm one of the lucky ones. I've heard many stories today. I feel terrible.
Okay. We're going to hear from Kurtis Colman and then Sarah Cormode. Welcome, Kurtis.
Kurtis: Thank you.
Kathleen: Make sure that he is(?)-is it on?
So glad I was, like, number 20 because listening to all you guys is actually, like-this whole time my heart's, like, leaping out of my chest. I just want to, like, been wanting to, like, get out of here. I'm, like, "Don't do it!" So I'm so glad you guys all went before me, because I was, like, "Oh, now I have to do it because they're all amazing." So after these speeches, I'm hoping for my sake that right now they find a new Lyme symptom, makes you great at speeches, because-that-right? And then as you can see from how I'm dressed, like, my Lyme paranoia kicked in before I came in. Like, I was totally thinking that I'd be in, like, a boardroom with, like, men in, like, white suits, and they're just, like, sitting there, like, looking to sue me or something. I don't know.
So I'm so-I'm just really happy it's you guys here. Like, it's awesome. Okay. Yeah, so I said a prayer before this that my brain fog and anxiety won't happen for five minutes, but that's not happening. I, like, I am really grateful for the opportunity to speak. And, I don't know, I was kind of thinking about it. And I was, like, you know, giving people who suffered so much five minutes to just talk about what's happened, it's, like, literally trying to, like, take all the trauma of Precious and put it in a short film, you know what I mean? Like, you're not getting the whole stories here. So anybody who isn't part of the Lyme group, like, remember there's so, so much more horrible things that happen besides this, even though we're hearing so many of them. So earlier today-it's already been a great experience, because I met somebody and she couldn't speak because she's just-her symptoms are so much worse.
And we just hugged for a second and I said, "Good luck to you." She said, "Good luck to me." And then she said, "Just don't-make sure you don't give up, okay?" And then she was, like, "Promise." And I was, like, "Okay." And then I made her promise too, right? And that's something I really find beautiful, when people with Lyme, like, you guys aren't quitting, right? And there's every reason to. So it's really-it's beautiful. So yeah, my name's-yeah. My name is Kurtis. I'm only 23 years old. But for 14 years of those 23 years, I was dancing. So I was even in, like, TV shows and I was doing music videos and stuff. And so when I got sick and through no fault of my own, like, it just ended, right? So 14 years of a career, like-I know I'm young and I have time. But still, like, that's a big chunk of my life, like, just gone, right?
And then it took two years for a diagnosis. The first doctor said, "You need antidepressants." I know you guys have heard that a million times, but it's true. And then I went to the Toronto Emergency one day, because I literally was-my whole body was on fire. My nerves were just, like, exploding. I didn't know what was happening. I went to the Toronto Emergency. I was curled up in a ball, couldn't move because my nerves were hurting so much. And I went to see the doctor. He was, like, "Oh, go home. Take some Advil for your back pain." I was, like, "Hm, screw you." I said that in my head; I didn't actually say it to him. I wish. And then-so I got the ELISA test done. That was negative. Shocker. But even, like, the CBC News-it was on the news report saying that it gives 50% of false positives, right? And other researchers even said that it's as much as 60% inaccurate. So-and it only tests for limited strains, as we heard before. So it's, like, getting a diagnosis in Ontario is literally like winning the lottery at this point. It's just pathetic.
And then even if it's positive, the doctor can be, like, "Oh, it's a false positive, so that doesn't count." So the only good experience I had with a doctor was-I got diagnosed with fibromyalgia and he was, like-he was honest with me. He was, like, "That's, like, a garbage pile diagnosis. When they don't know what you have and they don't know what to do with you, they're like, "Oh, you know, fibromyalgia."" So that was nice of him. That was, like, the best thing I had with a doctor. That says a lot there. And then I had the IGeneX testing, which was positive. But then, as Canadian doctors say, there's not enough research done in this area. So it's-I was kind of thinking to myself, "You know, maybe do the research. But no, let's just stick to the crappy test." So then I was diagnosed with depression. And I was, like, "Okay, I'll trust the doctor and I'll go with this."
I went to rehab at 22 for three months for depression. Treated that. I got so much better. I learned, like, a more spiritual way, all that stuff. And then I got diagnosed with fibromyalgia while I was in there. Took Lyrica for a bit and that helped one symptom and the 30 other ones were still there. So, I don't know, it just didn't make sense because, like, MS, lupus, ALS, chronic fatigue, all that is clinically diagnosed. But then Lyme isn't. I don't know. I don't know. Doesn't really make sense, but I'm not a doctor. So even if you get the chronic Lyme bulls eye rash, which we all know is, like, an instant diagnosis, you know, you don't get it, you still don't get diagnosed by a doctor. Sorry. This one's funny. I wrote-I was, like, for the depression, I was, like, "I'd be depressed too if dogs had better testing," you know what I mean? Like, cheese. And, like, when you hear all this, like, we're not crazy-you can tell we're not crazy. Like, there's obviously a point where you're, like, "Alright, something's wrong. It's not us. It can't be. There-it doesn't make any sense."
So I don't really blame the doctors though, because if they help too much they get their licenses removed. So I don't-I really don't blame them. They don't have a choice. Like, imagine if you were, like, you were going to help somebody on the street or something like that. And they're, like, "Oh well, if you go and help them, then you're going to lose your job, everything you worked for, probably your family's security." And I'm going to be, like, "You know what? I'm good." Like, I don't blame the doctors, you know what I mean? Like, it's not their fault, I don't think. And then I just don't understand how the Canadian guidelines, it's more acceptable to have a mental illness or depression than Lyme. Like, they instantly diagnose you with depression. It's, like, why? I don't know. I don't get that.
The scariest part, I think, just to get real for a second. Oh, I'm so over. Okay. Just the, like, the transmission. So this part's actually scary to me. I'm going to try to be serious for a quick sec. The transmission, it's, like, okay. So if their blood testing isn't good, and inaccurate and then I go to donate blood, right? You can figure the rest out for yourself, but that's happening, know what I mean? Like, Lyme affects different bodies different. I could have Lyme and get a headache from it and then someone else could have Lyme and they're, like, in a wheelchair from the same strand-strain or whatever. So I'm feeling okay. I go and donate my blood to the blood and then we-there's the story from there. And it's not publicly known by that. That's terrifying. Like, it's not publicly known and also how it could be sexually transmitted, how it's from mother to child.
And that's not public knowledge. It's terrifying. And then-last thing, I promise. I just-I just-I really, really hope this makes a difference, like, this whole weekend, because-or whatever this is, three days. Because, like, that two years of questioning if I was insane or not and, like, thinking maybe I had schizophrenia or maybe that stuff. And that seemed logical to me, because the doctors were, like, "Nah, not Lyme." I just, I would not worst-like, I would not wish that on my worst enemy, you know what I mean? Like, two years of that limbo of, like, what am I? It's terrifying. So I just really, really hope-I have way more points but I'm sure we all do. We could have talked here for hours, right? So-but thank you guys so much. Really appreciate it.
Thank you for being a friendly, supportive audience, first of all. My name is Sarah Cormode and I've been living in Coast Salish Territory in Victoria for the past 16 years. I'm a passionate lifelong learner and educator, and I'm also now a student of complexity and an agent of change. I want to start by letting you know that I am 80% better on good days and about 60% better on bad days. So that's really worth celebrating. I love to play outdoors. I don't know how you guys don't cry up here. I love to play outdoors, paddling, skiing, hiking and biking. Four years ago while I as hiking, I was bitten by a tick on the back of my head. It was smaller than a sesame seed. And it was right in Victoria. And my life has been forever changed from that moment forward.
So how has Lyme disease affected me? Thank you. I lost three years of my life. I lost my memory, I lost my ability to focus and to formulate sentences. I lost friendships and relationships. I lost my ability to work and my ability to contribute to society, which is really important to me. I lost my chance to be a mother. I lost my house. I lost all hope and I very nearly lost my life. I was told that I didn't have Lyme based upon an inaccurate ELISA test that was done within two weeks of my bite, and this cannot be used as a reliable diagnostic tool, period. Ever. There were so many times when the doctor could have intervened and treated me successfully while in the acute phase of this disease. Instead I was passed from doctor to doctor, specialist to specialist, all of whom in my mind should be able to clinically diagnose me with neurological Lyme disease. I was a textbook case.
Just three weeks ago after four years, I finally had a Canadian Internal Medicine doctor agree with me that I contracted neurological Lyme disease from a tick bite in 2012. Okay, so that's good. However, he won't report my case to the Center for Disease Control. So I still don't count as a case here in Canada. And we wonder why the reported numbers are so low. We need to give those doctors courage and strength to report, because that's just so wrong. The Honourable Health Minister Terry Lake stated in the B.C. Legislature just last month, and I quote, "Family physicians are well trained to recognize the clinical stages that are presented by someone with acute Lyme disease. They're certainly well within their practice scope to recognize and treat Lyme disease, which can be treated in the acute stage with a course of antibiotics and can be very effective in treatment."
My experience in the B.C. medical system clearly demonstrates that this is not the case, as I saw 16 doctors and specialists and not a single one of them was able to diagnose me clinically or diagnostically, not even our doctor of Infectious Disease. I endured three years of unbearable pain and I continue to experience symptoms daily, although they're a lot better. I chose to seek medical treatment in the United States and I'm forever grateful to doctor-medical doctor Sunjya Schweig for his compassion and ability to treat me and guide me back to health. I'm also grateful to the naturopathic doctors in B.C. who treated me, Dr. Eric Chan, Dr. Maria Boorman and Dr. Kumar Biswas. And I thank them for saving my life. We're continuing to feed this myth that Lyme disease is difficult to diagnose. It's not that difficult to diagnose. So we need to get over that idea.
My sister was able to diagnose somebody on Facebook because she presented with the same symptoms as me. This woman had lost her ability to walk and her ability to communicate. And she was writing farewell letters to her four children because she was sure she was dying. Within two weeks of treatment she was walking and talking again. We cannot underestimate the impact that Lyme disease is having on families. It was unbearable to have my family and close friends witness my deterioration and my suffering. All these stories are so common and they're just completely unacceptable. We have brilliant scientists and doctors here in Canada and we need you to be our allies. This is a great opportunity for incredible scientific and medical breakthroughs. But we need to support our doctors with adequate training and our researchers with adequate funding.
My father, Dr. Edward Cormode is here. He's my hero. And I'd really like my dad to get to enjoy his retirement instead of advocating for me and everybody else. So I ask his colleagues in the medical community to step forward with curiosity, compassion, a desire to understand and courage to advocate for their patients. The Public Health Agency of Canada, health ministries, and the CME need to take the lead in ensuring that this change happens. Please come forward and carry the torch. I don't speak on behalf of people living with Lyme for we each have our own story. But I do want to remind everyone that there are many people suffering at home right now alone. And to those of you at home and to everybody in here, I just want you to know that there is hope because we're all here taking action today. And you guys are honestly the strongest people that I know. Every single one of you. So please hang in there and know that change is coming.
Inactivity and controversial debates are no longer options. It's time for real action. Please doctors, scientists, politicians, public servants, we all need to play a role. We need to join together to prevent and cure this disease. It is one of the most devastating and yet most preventable chronic illnesses. In the future, when we look back on these times through the retrospectoscope, we will clearly see how so many people have been misdiagnosed and alienated. We have a great medical system here in Canada. However when we look back from the future, we will absolutely see that this is one of the biggest failures of modern medicine. Wouldn't you prefer to be part of the solution? Doing nothing is no longer an option. We're all in the boat together. And I used to work as a white water rafting guide up the river here. And, you know, if I was about to take you through Coliseum Rapids right now, I would say to you, "Paddles up, everyone. All together. And hard forward." And that's the message. We need to move hard forward all together. Thanks for your time.
Thank you, Sarah. Sarah's dad has asked if he could speak for two minutes to give us the father's perspective.
I'm kind of crashing the party. I just couldn't sit there any longer, and no one here has spoken about the effects on the caregivers, the loved ones, the parents. And to be-to call-every time the phone gets answered, "Have they just committed suicide?" Sarah that she was so low and to see her goals of having a child and losing her house and the effect of every single family member. And I would agree with the doctors that spoke, that Lyme isn't that difficult of a thing to diagnose early. And my passion-because that's where the only place where agreement between the two duelling protocols comes up is in the early diag-everybody agrees. Early diagnosis, early treatment, cure. Lyme tests in the first month anywhere in the world by anybody are unreliable when you look for antibodies.
So let's start diagnosing people in the first month. Screw the test. Start them on antibiotics based on clinical findings. Lyme is clinically-is symptomatic-rich and sign-poor. Signs are things you can see. Doctors love to see things. They love to see a positive test. But if the tests are unreliable, we've got to treat it clinically. And just very quickly I was going to-I wrote down some little thoughts for me for in the future. But stop saying you have two-tiered testing for Lyme disease is negative at less than six weeks, the person from whom the blood is drawn does not have Lyme disease. Start saying that it's unreliable and we've got to start treating. Stop saying 80% of people have bulls eye rashes. This is the information that the doctors that you're going to are basing their diagnosis on.
The people they ask for help, if I have somebody with a heart problem, I send them to a heart specialist. He sends me a report. If you have a problem with infectious disease, you go to the Infectious Disease doctor and he kicks you out of the office. And stop saying Lyme disease is difficult to diagnose. Stop saying that ticks that are embedded for less than 36 hours don't cause Lyme disease. There's lots of evidence to say that's not the case. And stop treating with a single dose of Doxycyclene. That's just not how you support. So this disease is just-wipes out families. And I'm just so proud of my daughter and that she's had the strength to get through what she's got through. Thank you.
Thank you, sir. Okay. So we have one, two, three, four, five people on the list. Joanna Cristini. Joanna, are you here? Thank you, Joanna. And then we'll hear from Bruce Crosby.
Okay, I'm going to try and stand through this. Good evening. My name is Joanna Cristini. I live in Ontario. My journey began in the mid-1980s when I was 15 years old. I was diagnosed with radiculopathy, or sciatica, as I was told. During the next 30 years, I went on to be diagnosed with TMJ, hypertension, pneumonia, Bell's palsy, Guillain-Barré, focal seizures, chronic sinusitis, tendonitis, bursitis, plantar fasciitis, chronic bronchitis, Grave's disease, thyroid cancer, fibromyalgia, chronic fatigue, osteoarthritis, depression, Sjogren's and cephalopathy, interstitial lung disease, recurring paralysis and neuropathy. I was called a medical mystery by my GP of 13 years.
In 2015, by chance, I was tested for Lyme disease in Ontario. After two positive ELISAs and an indeterminate Bartonella, I was finally sent to an Infectious Disease doctor. Armed with my list of 55 symptoms, which I was asked for a copy, I was told I probably have an infectious disease that is not known yet. This is cutting edge science. On my second visit, I was told I do not have Lyme disease, "But I'm keeping your copy of symptoms," and I have no clinical proof. My results were false positives and I do not own a cat. In April 2015 after more testing, I was diagnosed with chronic Lyme disease, Babesia and Bartonella in the U.S. A few months later, I saw a news article about ticks found positive in Morningside Park near the Rouge Valley. My heart started racing.
You see, I grew up on Morningside Avenue, a five-minute walk from Morningside Park. I went to West Hill Collegiate right next door. As students we had class visits identifying leaves and trees. We rode our bikes and had picnics in that park. I also remember the large red rashes on my legs, more than one. I was told at the time they were mosquito or black fly bites and I was probably allergic to them. "Put some rubbing alcohol and it will go away." Infected black-legged ticks have been here for at least the last three decades. 30 years, 50 doctors, 100 tests, 24 diagnosis and 55 symptoms later, I finally have an answer, at probably a cost of over $100,000 to taxpayers. I am now finally on disability.
Warnings, newsletters and studies have been sent to Public Health, College of Physicians and other entities as to the seriousness of this growing concern from environmentalists, vets, doctors, scientists since the early 1980s. They are documented in CMAJ and other journals. The first cases of Lyme disease in Canada were in 1984. Tick surveillance did not start until 2009. A little too late for many of us. Why was it ignored? I have heard so many symptoms-sorry. I have heard so many stories of visits to the ER where the rashes and symptoms were obvious. The bulls eye rash my neighbour showed me last summer from her backyard. Another neighbour who told me her dog was just recently diagnosed with anaplasmosis in my neighbourhood.
This is Canada, a first world country with a top notch health care system, so why are our tests going missing? Numerous patients I have spoken to have been told their tests were never done or their tests have disappeared, only to show up positive months later. This illness is not your average infection with standard textbook symptoms. No two people will present the same. Over the years, I have had abnormal MRIs, EEGs, spec scans, blood tests and four positive ELISAs, all of which have been neatly tucked away in my medical file. Many of us were highly functional, career-oriented people. We would rather be healthy and working.
The recent news articles all suggest to go see your doctor if you have been bit, have a rash or other similar symptoms. 95% of them will not know what to say to you. This needs to change. We need education and accountability in our public health care system so the next person bitten doesn't end up like me. On closing, I will leave you with this. My two sons have been diagnosed with meningitis, juvenile rheumatoid arthritis, restless leg, hyper-mobile joints, borderline EDS. They have no history of bites or rashes, but have tested positive for antibodies to Lyme. Coincidental or congenital? Thank you.
So we're going to hear from Bruce Crosby. Is Bruce here? No? Okay. Esther-Ann Davies. (Inaudible).
My name is Esther-Ann Davies and I'm an elementary school teacher who has been fighting Lyme disease since 2004. During this time I have been unable to work and I am on long-term disability. For my five minutes today, I would like to focus on my experience and what would help in my fight to regain my health. In 1994 I was bitten by my first tick and shortly after developed what was thought to be viral meningitis. In 2004 I was bitten again in my backyard here in Ottawa. I had all the classic symptoms, including the flu-like malaise, joint pain and stiffness, headaches, toe cramping and contorting, vibrating vision, chest pain, brain fog and intense numbing, fatigue, and I would become easily overwhelmed with the simplest of things.
I went to the doctor right away and they looked at each symptom individually instead of as a collective group. No diagnosis was offered and my health deteriorated. Oddly enough it was my dog's veterinarian who first suggested I might have Lyme disease. My doctors eventually agreed and suggested I go to the U.S. to see a Lyme literate doctor after efforts to try and help me here. Three years after my tick bite I was tested in the U.S. and told I had Lyme disease and two of its co-infections, Babesia and Bartonella. My U.S. doctor told me I was so infected that if I had been living in the U.S. the CDC would have wanted to monitor my treatment. I had been tested numerous times for Lyme disease in Canada and yet I have never received a positive ELISA test result. At the time of diagnosis in the States I was told I needed a picc line and IV antibiotics.
I have undergone rigorous antibiotic therapy over the years, during which I have taken high doses of various drugs over long periods of time. Progress has been slow and steady. When I had been taken off the antibiotics, my symptoms returned. I have now been told that I have chronic Lyme disease due to the length of time it took me to receive proper treatment. While I often wished that I could eradicate this disease, I now believe that this may never be possible. Instead I need to be able to manage this infection so that I am able to have some degree and quality and some quality of life. Throughout my illness I have continually tried to work with the medical system here in Ontario, with varying degrees of success. While I have a GP who recognizes my Lyme disease and is very supportive of the treatment protocols suggested by my American doctor, he will not write a prescription for me.
We need to start by encouraging doctors to get properly educated about the symptoms and treatments of Lyme disease. We need to remove the stigma of being a Lyme doctor. The governing bodies for doctors need to start recognizing and encouraging doctors who are willing to help people fight this disease. I have personally had three doctors stop treating Lyme patients because they have either been investigated for treating Lyme disease or they are afraid of losing their licenses and being investigated, like many of their colleagues. I no longer have a doctor in Canada willing to write me a prescription for the antibiotics I need when my Lyme disease surges. When my Lyme surged a year and a half ago, my GP said, "You need antibiotics. But I can't give them to you. You need to go back to the U.S."
Over the eleven years I have seen numerous specialists and medical doctors, and only one of whom has been educated about Lyme either through their association or through personal interest. When doctors hear I have Lyme disease, I get the following responses: the sigh combined with the eye roll, "Ugh," or I get the statement, "Well it's not Lyme. There is no Lyme disease in Canada," or the out and out denial of my symptoms. Can you imagine if this was how doctors treated patients fighting cancer? Give Lyme patients access to the medical care we need, whether it is a picc line for antibiotic therapy or access to a specialty clinic. It took me three years to get a picc line in Canada and start IV antibiotics. Most recently I was turned down by the eye clinic at the Ottawa General Hospital because they do not treat people with Lyme disease.
Let's give the doctors the support they need to write prescriptions. Update the CPS and properly list Lyme disease under each of the drugs that can be used to treat various aspects of Lyme disease and each of its co-infections. If MDs aren't willing to treat this disease, then let's train the naturopaths and give them the tools to fight this disease. Allow them to write prescriptions. They can do so in B.C. Let's think outside the box. We need to be looking up ways to fight this disease that may include not only antibiotic therapy but alternative methods of treating it. Multi-light IV therapy, ANDI treatments, (inaudible) treatments, Chinese medicine and herbal remedies are all alternative methods being used worldwide that deserve consideration. Current testing in Canada is not working. Let's stop relying solely on the ELISA test. Why are we not testing for markers of the disease and looking at implementing the test used in the U.S. here in Canada?
We need to get the government labs on board to look at alternative ways to properly diagnose Lyme and all of its co-infections. Let's talk to the veterinarians. They are more up to date on this disease than many of the doctors I've spoken to. We need to recognize that as long as Lyme disease is not being treated quickly and properly in Canada, chronic Lyme disease will exist. Chronic Lyme patients need access to antibiotics and other therapies to keep symptoms manageable and under control. Failure to do so just results in escalation of the symptoms and a decrease in the individual's ability to function on a daily basis. My medical bills range from $10,000 to $15,000 a year. I have benefits, but they don't cover prescriptions filled in the U.S. Let Canadian doctors openly write prescriptions for the drugs recommended by the U.S. doctors. Help us with paying the medical bills. 15% back on our taxes is a drop in the bucket when we're spending $15,000 a year for medical bills for healthcare we cannot receive in Canada. Thank you for listening.
Okay, we have two more speakers. Is Lori Dennis with us?
Kathleen: Okay, Lori. Welcome. And then is Lara with us? Lara di Tomasso.
So I just want to start by just thanking everybody, because everybody's just so courageous and I just appreciate that so much. And also just being together makes us all feel a little bit less lonely. Okay. So my name is Lori Dennis. And I'm a mother on a mission. Ever since my son Matthew fell ill almost four years ago, my only focus has been to help him get well. Little did I know that when we first began this journey, just how deep and unending this rabbit hole would be. After seeing more than 20 specialists in the first 18 months of his illness, all of them completely missed his chronic Lyme diagnosis by a long shot. We were left on our own to determine why he was so sick. Thus began the medical odyssey that we have been on, learning about the disease, navigating his healthcare, determining best practices to manage Lyme systemic destruction.
Throughout these past four years what we have come to know above all else is that chronic Lyme disease is nothing if not pure and utter madness. This multi-system, multi-layered, complicated, mind-bending, confusing, terrifying medical condition has pushed us and all Lyme sufferers into a black hole of conflicting opinions, skewed research, political controversy, widespread corruption and infinite medical navigation. While helping my son steer his journey from no answers to what we hope will be a full recovery one day, I was determined to write a book, Lyme Madness, which I am having published this summer. I wrote Lyme Madness out of a sense of outrage, helplessness, confusion, overwhelm and heartbreak. I wrote Lyme Madness to help us and others traverse this long, lonely arduous path from illness to wellness. I wrote Lyme Madness to get this message heard.
Lyme Madness, as we all know, is a global story. There are millions suffering and very few are listening. This is a do-it-yourself disease that requires immediate medical attention. I'd like to know who'll be listening and caring here, a conference that we've waited so long to attend. But first let me make it clear to whoever may be listening why chronic Lyme disease is without question pure and utter madness. As we know, chronic Lyme disease is a pandemic affecting tens of millions globally in 80 countries and on every continent except Antarctica. Yet in the popular media and the medical community, we hear more about the Zika virus than Lyme. Chronic Lyme disease is a complex, multi-systemic, neurological, bacteria-driven, AIDS-like, post-sepsis illness with relapsing fever, essentially destroying the immune system, infecting and affecting every organ, muscle, tissue and cell in the body, including the brain and the nervous system and rendering the body a sceptic tank filled with bacteria and toxins.
Yet for decades now the powers that be continue to narrowly define Lyme as an arthritic condition that can be treated with an Aspirin or two at the very least, or 28 days of antibiotics at most. Chronic Lyme disease is medically ignored and universally negated, forcing sufferers for the most part, save for a few heroic doctors, to diagnose, research, treat and heal themselves. It is a do-it-yourself disease, a moment by moment guessing game where the guessing never ends, a road you're forced to travel without a GPS. Chronic Lyme disease forces sufferers to be amateur sleuths, medical researches and experts in so many medical disciplines, including microbiology, neurology, gastroenterology, immunology, rheumatology, endocrinology, pharmacology and more, and I never wanted to go to medical school. I would have if I'd wanted to go. But now I have to be all of these things.
Chronic Lyme disease is known as the great imitator, mimicking 350 medical conditions, including MS, Alzheimer's, Parkinson's and the like. Lyme disease, and this is a good one, is treated more humanely on Facebook than in most doctors' offices worldwide. Chronic Lyme disease is defined by the powers that be as an insignificant syndrome that's difficult to catch, easy to diagnose and easy to treat. This entrenched party line mimicked by the conventional medical community has not changed since the first large outbreak in Old Lyme Connecticut more than four decades ago when Lyme was narrowly and incorrectly defined as a rheumatological condition called Lyme arthritis.
Most maddening of all, chronic Lyme disease sufferers are victimised not once but multiple times, by the disease itself, by doctors who turn their backs, by loved ones who roll their eyes and walk away, by insurers who refuse to provide coverage, and by the CDC and the IDSA-yes, let's name them-who insist that chronic Lyme disease does not exist. It's been more than four decades since the first outbreak of Lyme and it's been more than four decades that we've been fighting the medical neglect, dismissal and invalidation of this disease, while the numbers continue to proliferate around the world. Chronic Lyme disease is nothing if not complete and utter insanity driven primarily by the hand of political and medical corruption. This madness needs to stop. Unfortunately it will only stop when the Lyme cabal is stopped dead in its tracks and no longer has the power to dictate whether Lyme sufferers get the help they need. Thank you.
Hi. Thank you so much for the opportunity to speak and for staying right until the end. My name is Lara di Tomasso and I am Nicholas Arsenault's spouse. You heard from Nicholas earlier. And I really debated between, like, "What do I say? Do I tell my story as a spouse and a partner?" And, "Or do I tell both?" But I think I'm going to stick with kind of what it's-yeah, kind of my story and the questions that I'm asking right now, given the world that we were thrust into when Nick got diagnosed with Lyme disease. So Nick was diagnosed a little over two years ago through the IGeneX test in the U.S. Negative on the ELISA, like so many. And at the time-and that was due to a naturopath. Like so many others, multiple GPs gave him a battery of tests and no one ever thought to ask about Lyme even though he was an outdoor professional. We spent hours and hours hiking and camping, like, per week. Never a question.
So this naturopath in Toronto pretty much, I think, she was our saviour. And she asked all the right questions and she got us the right tests. So I'm negative on the IGeneX test. But one of the things that we were told by our doctor, our Lyme doctor in the United States and the naturopath in Toronto, is the risk of sexual transmission and the risk of congenital Lyme disease. And being on two different paths, I'm well. I have that good fortune and I immediately went to that place of, like, "What does this mean for us?" We're in our mid-thirties, you know, we have student debt. We're just starting our careers, we're moving to the big city to get our lives started and, like, all this stuff is happening. My partner can't walk around the block anymore, can barely keep his job. And so what does this mean in terms of my health and the lives of our families and our potential to have a family?
And I'm just so sick and tired of, you know, hearing/reading the phrase, "There's no credible evidence when it comes to Lyme disease." Because at the time that I started asking these questions, I went down my own path of, "Okay, I'm going to go see a gynaecologist and go to, like, you know, one of the best gynecologists in Toronto and start asking these questions." And of course I was kind of laughed out of the office. He told me to call Motherisk, I don't know if you're familiar with that in Toronto. I was laughed off the help line at Mother-like, she said, "I don't know what you're talking about. Like, we don't even-like, Lyme is not sexually transmissible. Lyme is not a congenital disease." So I had received really no answers except for through the Lyme doctor who I'm sure some of you have heard there's a protocol for, you know, trying to conceive when one spouse-one partner has the infection and the other maybe does, maybe doesn't. It's quite complex and …
So, you know, this whole idea that there is no credible evidence of sexual transmission and that there is no credible evidence of congenital Lyme disease is completely unacceptable. And I've heard it from GPs, gynecologists, Infectious Disease specialists, researchers, policy people, average Canadians, including, you know, my friends who are studying medicine who think, you know, we've gone down this crazy rabbit hole. And they know more about malaria than they do about Lyme disease, to be totally honest. And so I'm just here to really-I'm a research and policy analyst by trade and I know that the absence of credible evidence doesn't mean that scientists have exhaustively researched and found no evidence or that they have found evidence to the contrary. What no credible evidence often means is that the research simply hasn't been done. It hasn't been funded. And that is-that just can't continue.
We urgently need research. We need publicly-funded research into all aspects of this disease, diagnostics, treatment, sexual transmission, transmission from mother to child. We need treatment not just for people who test positive on the ELIASA or positive on the IGeneX or people who have been bitten by a tick and get a rash, for everybody who presents clinically with this illness. And people have spoken so beautifully tonight about how Lyme disease crosses borders in the body, you know. And, like, we know that Lyme-contrary to the public health message, we are told that Lyme, respected that border between the U.S. and Canada for, like, decades. We know that Lyme could cross the U.S.-Canada border and has. And we also know that it crosses those borders in our bodies and infects our joints, our organs, our nervous system, our brains, our unborn children.
So we need research that is also capable of crossing borders, that crosses disciplines. We need a public health response that crosses sectors. We need those ID doctors, but we also need the rheumatologists, mental health clinicians, psychiatrists, naturopaths, everyone around the table. I was just at health policy conference in Toronto for my job, and the theme of the conference was, "Let the patient revolution begin." So those poor people don't know what they've started now that they've all brought us together to the same place for two and a half days, which is really great. And I think that it's really important as we're-as Canada develops a research strategy and a framework for Lyme disease that patients are at the heart of this work.
People that have lived through this disease are experts in their own health. They need to be included as such in all aspects of this development of this strategy and framework and should be included at every step, not just consulted at the end or the beginning. And we need open minds. And like Sarah mentioned, we need curiosity and compassion to drive this agenda forward. So the ego thing is not going to fly. People need to try to forget what they think they know and go into this work with open minds and remember that we need to keep bringing more perspectives and knowledge into this discussion. And this is just the beginning. Thank you.
Thank you. Thank you, Lara. Thank you all so much for your stories. Kurtis, you were right. You guys are all really articulate and really effective communicators speaking to the mind and to the heart. Thank you for sticking with us until the end. We hope to see you tomorrow. We start at nine o'clock tomorrow morning. So I wish you a good night's sleep and I will see you tomorrow. Thank you.
Report a problem or mistake on this page
- Date modified: