2016 Lyme disease conference introductory remarks and public forum 1 online 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, Algonquin room
Should be about 15, 20 minutes max so that we can actually break out to the three other rooms where you will be participating in the presentations by the speakers who already know who they are.
My name is Dan Normandeau. I have the privilege of being your facilitator over the next two and a half days, and I do consider it as a privilege. This is an extremely important conversation for Canada and Canadians, and we're here tonight to begin this entire conference.
Of course, this is a Conference to develop a federal framework on Lyme disease.
I have six quick messages before I introduce the tri-chairs and have them welcome you formally.
First of all, the presentations that you'll be hearing tonight, the three by the speakers, the tri-chairs, as well as the other presentations by the speakers, will all be audio-recorded. They will be available online. I can't tell you when, but as soon as they're produce they will be available online unabridged. Alors les présentations que vous entendrez ce soir seront enregistrées et elles seront disponibles en ligne dans les semaines à venir.
Secondly, we're going to be inviting you to express yourself in the language of your choice. All facilitators in all rooms are fully and professional bilingual.
Each speaker of course will have five minutes, and they will be cued by myself in this room and the three other facilitators in the other room, and of course with a view to providing everyone with up to five minutes to share their voice, experience, journey, story, however you want to use those five minutes.
The fourth message I have with you is of course somebody was asking me about, "Well, how did we get to the order of the speakers?" Half of it was scientific and the other half was random. And that is, when we started planning for tonight, there were a certain number of people who had expressed an interest and more names were added. So in the first instance, your names are all down alphabetically, then it became random, but you all know who you are, the order that you have, and the facilitators and myself will be honouring that list and helping to cue you as well, those who are coming up following each of the speakers, to make this evening as efficient and as flowing as possible.
And again, of course, we don't want to end too late beyond the time that we have on the agenda so that we can be in shape for first thing tomorrow morning because we still be starting at 9.
Next quick message. You will see that there is an independent filmmaker in the room, and of course there's a video feed that's going into the room next door for the overflow. Tonight's session is not very long, so you standing, we're not worried about you because it's just 15 minutes or so, and then we'll be deployed in all our respective rooms. Tomorrow, however, you might want to, you know, grab a chair somewhere in the overflow room. It'll probably be more comfortable for you. But if someone does not wish to have their image recorded, please advise the cameraman directly in the course of the evening tonight, and of course tomorrow.
And lastly, this is an extremely important conference. All of you have been talking about this. If it's going to be a productive, generative, and very positive event that's going to be building a framework that's going to be responsive to the needs of Canadians, there's a number of ground rules I'm going to be inviting you to follow.
One is everything we're going to be doing over the next two and a half days needs to be based on respect. I don't need to tell you this. We're all really invited to listen deeply for understanding, to strive to understand why so that we can all evolve together towards the building of this framework. And I'm inviting you all to be hard on the issues but soft on the people. And this will give us an opportunity to be constructive, to be progressive, and to really hear deeply what people have to say so that we can learn from that, so that the future framework is able to be a step in the right direction, that it is going to be an improvement on what we have today. And of course, this is about creating a shared purpose for what it is we're here to do so that we can have a collective impact that's favourable, that really improves things, and that makes the approach to Lyme disease better, informed by your experience, your journey, and the science that we're going to be hearing about over the next couple of days.
So, essentially, I invite you to show respect to one another, to really demonstrate very active and deep listening to really understand the reason and also to be really hard on the questions, on the issues, but really easy on the people to make it a conference that focuses on results and that is a significant improvement in terms of the conference Tuesday afternoon - to contribute to a federal framework that can really improve the way the disease is really managed.
Without further ado, let me introduce the tri-chairs who have prepared this conference, who have heard many voices, who've designed an agenda, a program that is here to really respond to the objectives of this conference, which is to contribute to the development of a Federal Framework on Lyme Disease. And they are-and I will introduce them one at a time so they can come-I'll introduce them all but they'll come in one at a time to express their remarks.
There is Dr. Greg Taylor, the Chief Public Health Officer, Public Health Agency of Canada.
We also will hear from Mr. Jim Wilson, the President of Canadian Lyme Disease Foundation.
And lastly tonight, there will be Dr. Daniel Gregson who is the past President of the Association of Medical Microbiology and Infectious Disease Canada.
Without further ado, please join me in welcoming Dr. Taylor and the tri-chairs.
Dr. Taylor: [00:07:44]
Thanks, Dan. Good evening and welcome. I'm delighted to be here tonight to open this important public forum on Lyme disease. I'm eager to hear from all of the people who will be speaking this evening, so I'll keep my remarks very short.
First, however, I want to begin by sincerely thanking you for attending and sharing your personal experiences with all of us. The Conference Planning Committee and my fellow co-chairs, Jim, Dan, have been working diligently on planning and organizing this conference for the last several months. Right from the start, our intention was to make the conference as open and inclusive as possible. So I'm thrilled that more than 700 people are registered for this event, attending either in person or virtually.
As part of the Act to Develop a Federal Framework on Lyme Disease, which became law in late 2014, the Minister of Health will bring a new Federal Framework on Lyme Disease to Parliament based on your input. The goal of this important conference is to gather that input and to seek direction and guidance on improving our existing efforts in surveillance, education and awareness, treatment guidelines, and best practices. These are the pillars in our approach to preventing and reducing the risk of Lyme disease for all Canadians.
In keeping with the spirit of the Act, engagement and consultation are essential to the Framework's development. This evening's public forum is an opportunity for those most directly affected to share their personal experiences with Lyme disease. The stories we hear tonight will shape and influence the discussions we will have over the next two days. Tomorrow, a summary of this public forum will be presented at the conference as a means of integrating all that will be expressed this evening into the conference discussion to follow. It is important that the dialogue we begin tonight carry forward through the conference and into the broader development of a Federal Framework for action. There remain a number of unanswered questions about Lyme disease that require further research and analysis. Those speaking this evening will provide valuable insights that will help determine how those questions should be answered.
This conference is only one step of a much broader process of consultation and collaboration. There have been opportunities to provide your views before the conference and your input won't end with this conference. As the framework is developed, you'll have a chance to continue to provide feedback. The ultimate goal is to build a framework for action together that contributes to a better understanding of Lyme disease so that fewer Canadians suffer from its effects.
I look forward to continuing this work with you, and once again I want to thank you all for attending and sharing your experiences this evening. I hope you find this forum and the conference to follow informative and productive. Good night.
Ladies and gentlemen, Mr. Jim Wilson.
Good evening, everybody, and I want to thank everybody for coming. I know for a lot of you, this has been a very big challenge considering your health. And also, I want to thank those people who have gone through the rather arduous process of registering online and then logging in and coming at us from that direction. I know this has been challenging, but it is certainly going to be hopeful and worth it, I hope.
Also, I want to give a big thank you to Elizabeth May and all of the Members of Parliament …
… and all the Members of Parliament and the Senate who unanimously sent this bill through the legal process and into law. That was a huge achievement, and as we can all see this is now bearing some fruit, so we hope this is just the stepping stone.
I know that a lot of you are tired already, so I'm not going to give a long talk. I'll be speaking again in the morning and again at the wind-up of the conference. It took 27 years for us to get here, ever since the formation of the very first Lyme disease group in Canada, so it's significant that we're here. It took too long, but here we are.
So let's move along and get things underway. And please be respectful of the allotted time for each person's talk so that the evening can run smoothly. And I look forward to hearing from everybody's presentations. So we'll talk later. Thank you.
Ladies and gentlemen, Dr. Daniel Gregson.
Well, thanks, Jim and Greg, for the talks you've given. I'm here on behalf of the Association for Medical Microbiology and Infectious Diseases. I'd like to welcome you all to this important meeting we've having over the next few days. AMMI Canada's members are really dedicated to ensuring Canadians are protected as much as possible from infections and that we have the tools we need to appropriately diagnose and treat patients when they do get infected.
Over the next two days-not tonight-over the next two days, you're going to hear the scientific evidence that's going to help guide Health Canada in informing policies around Lyme disease in Canada. But tonight is about public input and we are here to listen. We'll hear your stories. Here's a little bit about my story.
I graduated from a medical school 33 years ago, and at that time there were public fora being held throughout the nation because there was this disease of unknown etiology with no effective therapy and 100% mortality. Those meetings at that time helped set forth the path of setting up networks of specialty clinics to guide us in collaborating on research and randomized controlled trials and having a coordinated response that has been so effective that the suffering, loss, and fears that occurred in the '80s and '90s is largely forgotten from the public's consciousness. And in fact, it's hard for me to recall what it was like during those years.
So during those years, I cared for a lot of patients, and I'll just give you a couple of examples. One of the first patients I saw was a young man, a young gay man, came into the hospital with low platelets of unknown cause. We had no reason to know why he had low platelets. Finally figured out that it was probably related to this new disease called AIDS. Managed it with a splenectomy. Discharged him from hospital better, and six months later I had to run a cardiac arrest on him in the emergency room for two hours, unsuccessfully. He died.
A few years later I had a patient who was a hemophiliac who I got to know very well. First met him when he had multiple infections in his joints. Got him over that problem. Saw him in the middle of the night in the emergency room with meningitis. Got him over that problem. And he subsequently died approximately two months after his wife gave birth.
And probably the hardest one for me to talk about is a young patient I had, Elizabeth. She was four years old, a twin girl. She had a mother who had HIV obviously as well, transmitted-her infection was picked up, transmitted during pregnancy, and the mother was really wracked with, you know, shame of having HIV and guilt from having transmitted this to her daughter. Took care of this patient for about two years, and the family had to move to Toronto and I had to really sit down with this mom for two or three hours to convince her that, despite my ego, that actually the people in Toronto could take care of this patient just as well as I could.
I was at a meeting probably two years later, standing by a poster one of my colleagues was presenting about a patient with a brain lesion. There's all these pictures and the X-rays and lesions in the head, lesions in the lung, etc. I had a chat with him. He said, "Dan, how are you doing?"
I said, "Fine. How are you doing?"
He said, "Fine."
I said, "Nice poster."
He said, "Oh, yeah. That's your patient, Dan. It's Elizabeth." She didn't make it, either.
So the suffering and loss my colleagues and I experienced during these years was really horrific. And you know, we heard people's suffering, we saw people suffering, and we still hear and we still see. We see your suffering. We hear your suffering. And there are, you know, people who are famous for their contributions to HIV science. Really, you'll read about them in the papers: Luc Montagnier is a Nobel Prize winner, David Ho was on the cover of Time Magazine in 1996, and a colleague of mine was invested in the Medical Hall of Fame just last month for his work on AIDS, both his discovery of 3TC, which is a backbone of therapy for many years, and his contribution to making sure patients worldwide received appropriate therapy.
But all the progress we had in HIV care and all the progress we have in all clinical illnesses is really dependent upon patient participation. All that progress we had was due to patients participating in trials. So patients who participate in basic clinical science studies and clinical trials, particularly randomized controlled trials, were really what helped us move forward to form treatments. So moving from what may or may not work to what works to what works even better, and HIV therapy today is managed-is evaluated by how bad the toxicity is, not how well the patient does in terms of outcomes.
So I'm going to close by saying not only is your input needed tonight, your input is really required for ongoing-we really require patients' participation in ongoing, well-defined research studies to really help us move forward in making people feel better. Thanks for your attention, and best wishes for a great meeting.
Thank you very much, the tri-chairs. I will have one quick message, and that is I'm going to be inviting everyone in about 30 seconds to go to the room that you were assigned. Those of you who are assigned to the Algonquin Room, this is what we're in here. We're going to begin in a few moments. Those of you who are in the Promenade Room, it is just outside the room to the right immediately, one of those rooms next to the coffee. Rideau Falls Room is right across the way. That's where the overflow room is. And those of you who are in the Freiman/Guigues Room, that's towards the corridor, down towards the washroom. Don't stop at the washroom, go beyond the washroom. It's the room right beyond the washroom; you can't miss it.
So the Algonquin Room is here, Promenade Rideau Falls just on the other side and Fremain-Guigues, take the corridor to the left past the washrooms.
So have a good evening. We'll see you tomorrow morning. And the room here, we're going to begin in two minutes.
[Open mic - chatting in background for several minutes]
Ladies and gentlemen. Is this mic on? Okay, here we go. So ladies and gentlemen, (inaudible) let's get started and (inaudible) going to be part of this room. If you can just (inaudible) a chair.
Okay, let me begin, because time is of the essence tonight. Ladies and gentlemen, if I can have your attention. We have 24 people who are participating tonight on WebEx, and of course you're going to hear their voices. We're going to be working with a WebEx operator who's going to ensure that we are able to pipe in each of the speakers. Once we've heard from the 24 speakers, there are three of you who are in this room who are going to speak, of course, from a microphone, and we'll be looking forward to hearing from you as well.
I'll ask Lisa Waldegrave to talk about the people who are part of WebEx in a moment. I'll be asking you in one moment to start your story. There's five minutes allotted, as you know. I won't repeat that. And then following the 24 speakers, we have three - we have three people who will talk who are from [inaudible].
And at one point, I'm going to be asking Mark Gerretsen, wherever-oh, there you are. I should have read your nametag. You'll be the first one to speak from this room, and then I'll be teeing up the other speakers as well, okay?
Alright, so let's go to the WebEx. Ladies and gentlemen, Lisa Waldegrave, can you hear me?
Miss Waldegrave, you may press *1 in order to speak into the call.
Dan: And we'll have Connie Latam who's going to be speaking after you. Lisa, are you ready?
Lisa: I'm ready. Can you hear me okay?
Dan: Absolutely. Thank you and please proceed. You have five minutes.
Thank you. Good evening, everyone. Thank you for this opportunity to share my nightmare in dealing with Lyme disease in Canada. My name is Lisa Waldegrave and I've been suffering with chronic Lyme disease and co-infections for 25 years, half of my life now. I went misdiagnosed for over 10 of those years. Since 1990, I have been unable to be employed, live on my own, do household chores, and I require the use of a motorized scooter for long walks or shopping at a mall today.
I am one of the few patients that I am aware of who has tested positive for Lyme disease on the ELISA test on three separate occasions with the public health labs in Ontario in 1995. I also tested positive on the Lyme IgM Western Blot, having the highly specific bands 31 and 34, and also band 41. Subsequent testing in '98 also showed a positive IgM Western Blot with bands 23, 34, and 39. Yet from 1995 to 2001, I was referred to four infectious disease specialists, hoping to get help. Even though I required a wheelchair to get to the appointments and was suffering with physical and neuro-psych symptoms, cognitive dysfunctions, and a weakened immune system, I was unable to get a Lyme diagnosis, treatment, or receive help from any of these specialists.
I heard the following comments: "Your test results are all false positives and you couldn't possibly have Lyme disease, and you don't recall a tick bite or a bull's-eye rash."
Another said, "Lyme is not my specialty, and seeking an additional opinion from someone whose focus is this illness might be prudent," yet he doesn't refer me to any such specialist in Ontario, because there isn't one.
Lisa: Excuse me. After going around in circles, consulting with over 20 doctors in Ontario, not knowing who or what to believe, my parents took me in 2003 to one of the top Lyme experts in the USA, Dr. Joseph Burrascano. After a lengthy review of my three-inch file, a consultation, and an exam, he diagnosed me with active Lyme, Babesia co-infection, a weakened immune system based on a below normal CD57 count. He also referred me to an American endocrinologist to be treated for various hormone deficiencies caused by injury to my hypothalamus-pituitary axis.
It took me 13 years from the time I became disabled to receive an accurate diagnosis and appropriate treatment recommendations. Dr. Burrascano said I may require open-ended antibiotic treatment for life.
Since 2003, I have received antimalarials, medications, and various antibiotic combinations in conjunction with complementary treatments, which we have paid for out of our own pocket. I have made improvements in my condition and my CD57 result is now within the normal range. However, we recently uncovered I reactivated Epstein-Barr virus and may also be co-infected with Bartonella. So to this day I'm still receiving treatment, and if I try to stop, I start to regress again.
So for those who don't believe chronic, persistent forms of Lyme exist, I say wake up and stop this madness. Canadians need and deserve help now. Trying to recover from chronic Lyme and co-infections …
Lisa: Excuse me. Has been very stressful, exhausting, and it is a full-time job. My parents and I have spent over $140,000 to get me to the level of functioning I have achieved thus far. Persistent Lyme disease has impacted every area of my life and has been extremely devastating. I have been robbed the opportunity to pursue a career, own my own home, have children, live independently of my parents, enjoy an active social life, travel, and be physically fit.
As a Canadian, it is incomprehensible that I have had to navigate this serious illness on my own and I have been left to fall between the cracks of our health care system. This is shameful and totally unacceptable.
I decided to share my story tonight with the hopes it would be a catalyst for change to prevent others from going through the hell that I have suffered. I hope our government will make changes, serious changes, and I do hope they will consider implementing a compensation plan for those of us who have already travelled out of the country and paid out of our own pockets to get the help we so desperately needed, deserved, and should have received in Canada. Thank you for hearing my story this evening.
Thank you very much, Lisa.
Lisa: Thank you.
Dan: And Lisa, for your benefit and those others who will follow, Connie Latham as a case in point, we'd like you to know that there's over 100 people in a room in Ottawa hearing what your story is and very much with you, so thank you for that.
Lisa: Great, thank you.
Dan: Connie? Connie Latam. Are you there?
Operator: Please press *1 in order to talk. Thank you.
Dan: Connie, you have the floor. Are you there, Connie?
Dan: Go ahead.
Good evening. I am Connie Latham and I'm grateful to have this opportunity to contribute to this conference my experience as a victim of Lyme and other tick-bound ailments such as Rocky Mountain spotted fever and Typhus fever. I am a resident of the southernmost part of Ontario and I presently reside in Kingsville, where deer are living in my wooded backyard. Prior to that, I lived in Wheatley and my backyard was a conservation area and deer are rampant there and came to our home often. I have travelled throughout Canada, United States, South America, and Dominican Republic. I've had several occurrences of tick bites while at my present home, in my past home, and during my travels. None of my symptom issues have been resolved and at present I am chronically ill and with age over 50, swiftly become incapacitated and moving to a …
Operator: I am so sorry to interrupt (inaudible). This is the operator. Are you online?
Dan: Connie are you still with us? Connie Latam?
Connie: … disease and …
Dan: Go ahead.
Connie: Can you hear me?
Dan: Yes, we can. Thank you.
Dan: Please proceed.
Connie: And at this very time I was often unable to function but physically. The symptoms were diagnosed by the hospital as cellulitis and treated with an intravenous treatment, which is (inaudible) both a foot and ankle rash as well as on my arms that I had for years since I travelled to many rural locations and went into deer, bear, and other infested areas. But this treatment was only a temporary fix as this rash reappeared and got worse.
Please note that before 2009, I was tested for Epstein-Barr, lupus, MS, and other tests, but no tests such as Western Blot tests for Lyme was given. I was (inaudible) to five dermatologists, all of whom did not do blood tests or take a culture of the rash. The only thing they prescribed was cortisone cream and it never cleared up the situation. These doctors are not capable of helping Lyme and other tick-bound diseases and they never once went beyond the administration of cortisone cream. We need to educate all the doctors, no matter what their designation is, about Lyme and the co-infections.
In January, 2014, I went unconscious for five minutes and was put in intensive care for a week. I had many things happening: heart problems, dehydration often diagnosed for tick problems, abdominal pains, blood count was low at 95, bloody black stools, and the hospital gave a diagnosis of Rickettsia. I asked what they would do about the Rickettsia and the doctor just shrugged his shoulders and said, "I don't know." And I was upset and flabbergasted at this. This should have been taken care of immediately as Rickettsia is fatal, especially for those over 50 years of age. I now have Rickettsia ACA based on the accumulating symptoms and lack of help in the medical system.
Later in the same year in the month of July, 2014, I was astounded by the fact that even though I had brought the tick in the bottle to the doctor's office, nothing was done. Then again one year later, in July of 2015, another occurrence. I went to the local hospital with a tick head in my back and the rest of the body in the bottle. Not one professional knew what to do with the tick. I cannot believe that they did not know what to do. I thought they would take the tick and test it immediately. This was the third visible occurrence with a tick and no help. I just can't believe the inadequacy of these occurrences.
And most of all, and recently in 2015, July, a hospital occurrence where the tick head was in my back but the hospital did not remove it, even though my entire back was inflamed and painful. They gave me one week's dose of doxycycline and told me to get more from my doctor. I called my doctor but I did not get a response because the doctor was ill, and then when the doctor returned gave me one week's dose and then disappeared for two weeks, apologized for not giving me another dose, and then one week later gave me another dose. This was a broken up dosage and was not sufficient to heal my situation.
Frustrated and at my own expense of almost $3,000 Canadian, I got Igenex, IgG and IgM Western Blot, and all other co-infections tested. I also took the PCR test and it was determined that I was positive for the IgG and IgM, and positive for Rocky Mountain spotted fever and the Typhus fever.
Later in the year, 2015, I went to a specialist in Canada and that doctor said it could not-that I could not be helped as the dosage was supposed to be constant, and for at least 28 days to 8 weeks with possible intravenous. But now it was too late to help me. The DNA marks are two bands, which I do have, and that means I do have Lyme in the USA but we need five marks for a CDC. I'm infuriated. I am dying. I am so very ill. I'm failing more and more and I am very upset with these doctors not giving the proper dosage from the hospital in the first place years ago with the Rickettsia and for not removing the tick head in the other incidence when they should have-they saw it and they did not remove it.
These are my current symptoms.
Dan: Wrapping up. Connie, I'll ask you to start wrapping up. You're over your time.
Connie: Okay. Well, basically, I have-I cannot function. I have heart problems and it's showing in the inter (inaudible) blockage of all types. Not able to function or even concentrate properly. I recommend that we look at having this, the Western Blot as a main testing. The two-tier system is not satisfactory and should be eliminated and go straight to the Western Blot as we need access to antibiotics, intravenous, and treatment, proper treatment, for Lyme.
And thank you for this consideration of this presentation. I look forward to having a positive outcome of this conference for the victims of this life-threatening epidemic situation.
Connie, thank you very, very much.
Connie: Thank you.
Dan: Both Lisa and Connie were from Ontario. We'll be moving to Tamara Cohen, who's from British Columbia, and I thought there were about a little over 100 of you in this room, but I was also told that there's over 400 people who are listening online, so your stories are being shared with a number of people.
Tamara Cohen, we look forward to hearing from you.
Operator: The line is open, Miss Cohen.
Dan: We're here listening to you.
Tamara: Can you hear me?
Dan: Yes, we can. Please proceed.
Okay. Okay, great. Thank you for the opportunity to present my experiences. This is a much-needed event that has the ability to help us all if we apply true wisdom to what we learn here, and that is my hope. Because of time constraints, I will be presenting suggestions based on my personal experiences and research. The data to back up these sentiments hopefully will be addressed in other talks with sufficient time and appropriate experts.
My name is Tamara. I'm 37 years old. I was bitten by a tick on a school camping trip at the age of 12. Severe fever and flu-like symptoms followed. There was no rash. Chronic health problems developed almost immediately at this time. Prior to this, I had no health issues. I was diagnosed with Lyme disease in 2013 by a naturopath after my life became unbearable. Unable to work, exercise, stand, or take care of myself. I was an athlete. I love physical activity, and I am not naturally a sedentary or low energy person.
I tried to seek the help of medical professionals, doctors, and was treated criminally, as if I was lying about what I was going through. I was belittled, treated as if I had no brain, and was constantly told I was depressed and should try to be more positive, and all of my symptoms would clear up. I have not yet heard of a person with chronic Lyme not having consistently similar and traumatic experiences.
My main motivation for speaking today is to address the realities that we as patients face in the conventional medical community in the hopes of changing that so we can get the respectful and appropriate treatment that we deserve as human beings.
To this date, I do not have a medical doctor willing to treat me. Things that are standing in the way of this happening are chronic Lyme is not acknowledged as even existing by medical professionals. I have been to seven different doctors, all of whom were baffled by my symptoms, but upon the mention of Lyme disease gave a variety of responses ranging from, "Lyme doesn't exist," to, "Lyme doesn't do that," "I can't tell you about that," including an infectious disease doctor. We must acknowledge the reality of this disease by the Canadian Medical Association and governing bodies so that doctors can be comfortable diagnosing and not fear losing their licenses for unrecognized treatment and diagnosis. If my own doctor had that luxury when I was 12 years old, I would not be ill today and have a very different life.
Once acknowledgement of the disease has been established, we must train doctors with correct and accurate information about the disease. The bull's-eye rash only occurs in about 5 to 7% of people, not the misguided 70% number they are told to use as a diagnostic tool. We must learn about the life cycle and different forms Lyme can take in the body. Six weeks of antibiotics must be given upon first being bit to ensure eradication. Two or three weeks is not enough, even if symptoms appear to die down. Doctors must become comfortable to diagnose without all the tools they are used to. Diagnosis will occur by acknowledging prior patient health and individual circumstances of events. Better to give six weeks of antibiotics, even if unsure of diagnosis in the beginning, than to let the disease manifest at a later time with no cure. I understand the antibiotic resistance problem. However, at this point in time, it is the best option that we have.
Canada's test for Lyme disease is inadequate and inefficient. The way the bacteria interacts with the body, most results will come back negative even if the patient is infected. Doctors will not receive lab results from other countries, especially IGeneX labs, which are seen as fraudulent. This is simply not true and, until we get our own testing up to par, must be recognized by the medical community as a diagnostic tool.
It is also a good indication that this disease is much more prevalent than we are yet willing to admit.
Mental health issues are huge in North America and Canada. A large percentage of people with chronic Lyme are misdiagnosed with depression and anxiety disorders because doctors lump them into this category. Symptoms can sound and present similarly. However, I guarantee you that they are very different in manifestation and origin, and doctors must be trained to be able to see these distinctions. It is also likely that a percentage of people with MS, lupus, chronic fatigue, and other such illnesses can be the result of some bacterial infection, Lyme or otherwise, and this should be funded for research.
Dan: Tamara, can I ask you to wrap up, please?
Tamara: Yeah. This is a … Lyme does not know borders and 300,000 people are infected with Lyme in the United States every year. Dr. Murakami and the CanLyme Organization have been gathering data for decades and we must accept this data and acknowledge it. Knowledge about Lyme disease is still emerging and some may argue that this is a reason to question its legitimacy. However, in cases of emerging illnesses, the Human Rights Commission states that a disability should be accommodated and proof of disability only requires evidence in line with the available body of knowledge. In my case and the case of many others who are fighting for accommodation, these requirements are more than met and there is a duty to care. Thank you to the Honourable Elizabeth May for advocating for us all, and thank you for allowing me to present this information.
Tamara, thank you very much, Tamara.
Dan: We also have Kerri Currier from British Columbia. Kerri, you are next.
Kerri: Hello, can you hear me?
Dan: Absolutely. Please proceed.
Great. Thank you to the Government of Canada and those who've agreed to convene in support of Bill C-442. My name is Kerri Currier and I'm speaking from Squamish, British Columbia.
I'm speaking on behalf of my dear friend, Brandy Wilmont, and her daughter who tested CDC-positive in British Columbia for Lyme and Anaplasmosis twice. The infectious disease doctor at B.C. Children's refused to treat her. Dr. Dobson claimed there was no way she could have been infected with Lyme. Brooklyn had multiple known tick bites and presented as extremely symptomatic. With Canadian labs coming back repeatedly positive, this poor little girl has spent the past four years with debilitating symptoms that no child should have to endure.
I'm speaking on behalf of my friend, Kelly Jensen, who has severe migrating joint and neuropathic pain, noise and sound sensitivity, endometrial issues, insomnia, depression, and exhaustion. She's the mom of two lovely young children and can barely manage to get out of bed. Her recent ELISA came back as indeterminate and the Western Blot was deemed by Dr. Morshed from the B.C. CDC to be non-reactive. They further refused to release the results to Kelly, the neurologist, or the family doctor, claiming they would not know how to interpret them. According to CDC requirements, five bands must be reactive to qualify as positive. However, certain bands, such as 93 and 34, are so Lyme-specific that it's possible to identify infection based on these bands alone.
Kelly was never asked about her recent European travel. According to Health Canada, an indeterminate band should be further tested through the National Lab for European Strains if the standard Canadian Western Blot is unable to capture these.
Kelly has sought private treatment at her own extreme expense and is making slow and steady gains. She's unable to work and is now on disability.
I'm speaking for my son today, who's only 11. Two years ago, following a camping trip, he started having bizarre symptoms, sweats, flu, rage, insomnia. He was brushed off as having a cold, possibly the flu. He had missed much of his school year last year due to fatigue, migrating joint pain, muscle weakness, and anxiety that makes him unable to be in a room alone. He describes the feeling as extreme panic, and muscle twitching and nausea is something he doesn't think he can live with anymore. My son has become a shell of what he used to be, almost overnight.
He tested negative on the Canadian ELISA. He was told he couldn't have Lyme based on his negative results. According to the Health Canada Adverse Reaction Newsletter, October, 2012, it confirms that the two-tiered testing, Canadian serology, is incapable of ruling out Lyme. He tested positive on the German ELISpot through Armin Labs, which meets stringent standards for diagnostic testing acknowledged by the European Union. He also tested positive on the U.S. labs and through DNA testing for co-infections through Health Genetics Centre in Toronto.
I've had to go to the U.S. to find care for him. I fear our journey ahead, but I promise him every night that things will be better. My heart breaks because I truly just don't know how to make everything okay.
I'm also here for myself because three days after returning from the same camping trip, I presented to the Squamish Walk-In with a half a tick broken off in my arm. I had a red rash around the site, but the doctor told me I was lucky because there was no risk of Lyme in B.C., and my rash was not an expanding rash, so not to worry. I had never heard of Lyme before that day. I just was there because I was feeling just awful and I had a bug bite.
I, too, had treated with the help of a doctor in the United States in the past year and a half and made considerable ground. Went on antibiotics, I am close to 85% normal. When I'm off antibiotics, I'm bed-bound with pain and exhaustion, seizures, rage-like episodes that require me to hide in my closet so my family doesn't see. At my worst, I was admitted to VGH Hospital with left-sided paralysis and spastic foot drop and they could not figure out why.
Prior to any of this, I was an active and healthy school teacher. I tested positive on Galaxy Labs for Bartonella and also positive for Lyme on the German and American labs. My Canadian labs are repeatedly negative.
I am concerned about the next steps the government chooses to take in its efforts to deal with the ongoing need for better research, testing, and care. I understand Queen's University has positioned itself nicely to step up to this challenge. While academia is critical, so is ongoing inclusion of all stakeholders, including patient groups and those with scientific opinions and research that may differ from consensus, IDSA, and current AMMI views. Queen's recently held an invite-only conference online that did not support these two aspects. The fear in the Lyme community is that the public taxpayer money will be allotted to support a directive that does not further Lyme research in support of those affected and those at risk. (Inaudible).
Dan: Kerri? Kerri, can I ask you to wrap up, please?
Kerri: Yeah. A similar situation to what's happening in B.C. with the Complex Chronic Disease Program. I urge any agreement in the framework's development to maintain scientific integrity in a transparent and inclusive manner which demands inclusion of patients, stakeholder groups, and differing opinions going forward. There are many solutions that can come from this conference and I am grateful to have been part of it. Thank you for allowing me to share my story.
Thank you very much, Kerri. Thank you. Moving along to Ontario, Nancy Diklic. Nancy, are you on the line?
Operator: Please press *1 at this time.
Dan: Nancy, you have the floor.
Good evening. My name is Nancy Diklic and I'm from Stoney Creek, Ontario. I do have a case of laryngitis but it is not going to stop me from sharing my ongoing struggle with Lyme disease this past decade. My son, Lucas Diklic, will now share our story.
In 2005, over a decade ago, both my mom and I were bit by an insect which gave us an infection. My mom was clinically diagnosed with Lyme disease based on a EM rash on her right arm. She was treated with antibiotics for five weeks and declared cured. During the five weeks of antibiotics, her symptoms, some of which included light sensitivity, muscle weakness, including foot drop, headaches, backaches, neck aches, and so on, improved but did not completely resolve. Nevertheless, she was declared cured. It was thought that it would be a matter of time until her health improved.
During the fall of 2005, she started cycling through her symptoms every four weeks. Among her other symptoms, she had pinkeye and a pimple-like rash that would occur on the site of her EM rash in a four-week cycle.
She found a research article by Dr. Sam Donta from the USA who wrote about a four-week cycle of Lyme. She was convinced that she still had Lyme. Despite negative Canadian ELISA tests, she did the IGeneX Western Blot for Lyme test, which came back strongly positive to CDC standards. If we were living in Buffalo, New York, which is only an hour away, she would without a doubt be counted as a confirmed case. She was then treated with almost eight months of doxycycline and two months of amoxicillin. Once again, her symptoms improved, but she was not symptom-free. She was very close to her normal health.
However, by 2009, her symptoms had returned. Once again, she was cycling through in a four-week cycle during the symptoms were intensifying in severity and duration. She was retreated with erythromycin and Flagyl for almost two years. Mom was so close to being 100% symptom-free, just one day of symptoms in a four-week cycle, but the College of Physicians and Surgeons of Ontario made her treating physician stop treating all Lyme patients in 2011.
By 2014, her symptoms once again returned and intensified. She had a biopsy of a recurring rash which was positive for the types of cells seen in the EM rash. At this time, she was reassessed by an infectious disease physician in Hamilton. The doctor refused to treat my mom without positive test results. Once again, as all previous times, her Canadian ELISA was negative. The physician requested both Canadian and European Western Blots for Lyme; were never done due to a negative ELISA despite her clinical symptoms and positive rash biopsy.
A second infectious disease doctor refused to even see her. His comment was that he did not have anything to add to the previous infectious disease doctor's assessment. The third infectious disease physician, after viewing her case history, suggested that it would be best to go to the States to be treated. My mom refused to go to the States to be treated. She felt that since she was infected in Canada, was clinically diagnosed, treated, and retreated, there was no reason for her to have to go to the U.S. for treatment.
One piece of the puzzle which was missing for nine years which was definitely a contributing factor to her reoccurring illness was a co-infection. In 2014, Igenex co-infection testing was done and was positive for Bartonella. The doctor who received the results could not dispute her need for treatment.
For me, I was initially told that I did not have Lyme disease since I did not have the EM rash despite my other rashes and symptoms I was presented with. I was treated half a year later for six months. In 2009, I also relapsed and was retreated for almost a year. I have been symptom-free since.
In sum, what our decade-long battle with Lyme disease has shown was that we need better testing here in Canada. The guidelines state an early antibiotics treatment will often yield a negative ELISA. Without a positive ELISA, we have been refused the Western Blot. Without a positive Canadian Western Blot, the (inaudible) spot (inaudible) IGeneX (inaudible) for my mom was negative but positive bands for me. Remember, I was only three and a half years old at the time.
Dan: Can I ask you to wrap up, please?
Lucas: We have been refused treatment. It's a Catch-22. We have been fortunate to be treated here in Canada over the years. I'm afraid to think where we would be if we did not get the treatment which we did over the years. It is extremely sad that many Canadians have not been as fortunate as we have. Please make 'made in Canada' Lyme disease tests and treatment guidelines and allow physicians to treat people who have Lyme disease and co-infections.
Nancy: Thank you for allowing us this.
Thank you, Nancy.
Dan: Thank you very much. We're going to be going to Alberta to hear from Darlene Esch. Darlene, are you on the line?
Operator: Please press *1 in order to interact.
Dan: Darlene, the floor is yours.
Darlene: Can you hear me?
Dan: We can hear you well.
Okay, thank you. Hi, I'm Darlene Esch from Westlock, Alberta. When I refer to Lyme disease, I mean Lyme disease and all its co-infections. We have been dealing with Lyme disease for about two decades. It took our family about a decade before we knew what was happening to our son, then we had testing done by IGeneX. The following is a bit of my experience of what happened at Infectious Diseases in Edmonton.
I sat in shock as the doctor held up our son's IGeneX test results, which we had brought in. She said she didn't understand the test. Then a few sentences later, she again held up the U.S. test and said she had a lot of these coming across her desk. Why didn't she take the time to understand what patients were giving her? A contact number for IGeneX was provided. She had more Canadian medical tests done. All turned out to be negative. I expected my son to be called back in for more testing to figure out what was happening to him and why, but that did not happen. Not one doctor tried to figure out why he was so ill beyond the standard procedures.
Since my son had already seen numerous doctors and had numerous diagnoses, he told me before the appointment that he felt that doctors would do nothing new and nothing new would be learned. I thought since there were four of us here presenting his case, and they had years of his medical documentation to review, we would finally get some answers, but no, he was right and I was wrong.
At that time, he could be prescribed painkillers like candy; it would not touch his pain. He was on medication to control his muscle spasms so he could stand and walk, was incontinent, could not keep food down, suffered from memory loss, alternated between constipation and diarrhea, and had lost at least 70 pounds, to name just a few of his health issues. He was not able to work or attend school for about five years.
We felt abandoned but continued to seek information from other Lyme disease sufferers and their supporters, mostly in Alberta as we had limited funds. We finally found a doctor who was willing to try and help. Some treatments didn't work and some did. Our son slowly started to improve for the first time in over a decade. For example, after three months of long-term antibiotics, he started having normal bowel movements, which he had not had in about 12 years.
After a number of months, the College of Physicians stepped in and stopped part of the treatment. His improvement came to a standstill. Other treatments were tried but didn't yield results. Our son stopped seeing this doctor as we didn't want to get the doctor into further trouble because the doctor's license was threatened. This doctor, as far as I'm concerned, saved my son's life. My son spent a period of time with no treatment and his health declined.
We then travelled to see a doctor as treatment by distance is better than no treatment. Treatment is very expensive as it isn't covered by medical plans. This issue needs addressing. Today, my son still has many health issues. He has been told by the pain clinic that some of his joints look like he has done hard work for 50 years, but is so far able to do limited work and enjoy his family. He needs a doctor who is knowledgeable about his health needs, who he can see on a regular basis, who can address his long-term Lyme needs.
Canada needs a Lyme disease information-sharing network which would include researchers, doctors, and patients. Patients could be given an ID number to protect their identity. The patients' information, treatment plans, etc., then could be shared with other doctors and researchers, the end goal being increased positive results for patients, more up-to-date information for doctors, and possible research information-gathering for researchers.
Dan: Darlene, can I ask you to wrap up in a few moments, please?
Darlene: Okay. We need increased funding for research on different strains of Lyme disease occurring in Canada and ongoing, up-to-date education for doctors. This disease's ability to change affects both testing and treatment options. Other countries should also be accessed for their better testing and treatment options and expanded research, as Canadian testing, treatment, and research is very limited. Thank you for allowing me to speak at this conference.
Darlene, thank you very much.
Dan: We're now going to go to British Columbia and hear Carole Harmon. Miss Harmon, are you on the line? Operator, could you instruct?
Operator: Miss Harmon, you may press *1 to interact.
Dan: Carole, are you with us? Carole Harmon? Okay, Operator, if we cannot speak-or, if we cannot hear from Mrs. Harmon …
Operator: She is not on the line, sir. I'm sorry.
Dan: She's not on the line?
Operator: No, sir.
Dan: Okay, thank you very much. If she comes back, we'll try to accommodate her.
Operator: Thank you.
Dan: We'll go now to Ontario, to Michele Hogg. Michele, are you there?
Michele: I am here. Can you hear me?
Dan: Michele. You have the floor. We can hear you well. Thank you.
Okay, thank you. My name is Michele Hogg. I am a native Newfoundlander who has been a resident of Ontario for 27 years. In 2011, after a lifetime of serious and sometimes life-threatening health issues, I was diagnosed with chronic Lyme disease and the co-infection Bartonella. My diagnosis was based on a clinical presentation and 300 pages of my medical history. It was confirmed by Igenex in January, 2014.
Tonight, I have-so because my story is very similar to the previous ones that you have heard, tonight I would like to focus on some of the misconceptions regarding the presence of disease-infected ticks in Newfoundland that have been published by Health Canada, the Public Health Department of Newfoundland and Labrador, and by Canadian media.
In August, 2015, a four-year old girl from Brigus, Newfoundland made national headlines because it is believed that she is the first person to have contracted Lyme disease within the province. According to Newfoundland's Department of Health and Community Services, up until this point only five cases had been reported between 1996 and 2015, and it is believed that these infections were contracted during travel outside the province. It was also stated by Hugh Whitney, the province's Chief Veterinarian Officer, that although there are no permanent tick populations in Newfoundland and Labrador, climate change is one of the key factors in the increasing numbers of the parasites that are found more often in recent years. In a report published by CBC in June, 2015, it was stated that migrating songbirds and expanding white-tailed deer populations are also believed to be contributing to the increase of Lyme disease-carrying ticks. These facts are a cause of concern to me because 50 years ago I was infected with Lyme disease in what was then a rural area southwest of the St. John's city limits.
The first misconception that warmer temperatures have resulted in an increase in the population of ticks can be disputed by the fact that a variety of ticks have survived in Alaska for hundreds of years. In a report titled "Fairbanks Incidents Serve as a Reminder that Ticks Live in Alaska," Dr. Kimberlee Beckmen, the only veterinarian for the Alaska Department of Fish and Game, states that ticks on small mammals like snowshoe hares, squirrels, lemmings, voles, and birds, are endemic to Alaska. She states, and I quote, "We've always had ticks on wildlife."
Secondly, ticks do not only hitch a ride on migrating songbirds, but also seabirds such as the beloved puffin, which received the distinction of the national bird of Newfoundland in 1992. Beginning in 1991, scientists, particularly biologists, began to study a third tick, Ixodes uriae , the seabird tick, and 10 of the 61 ticks from Gull Island in Newfoundland were found to be positive for B. garinii, a vector of European Lyme Borreliosis. In a paper titled "Purple Paper," author Simon Habegger states the presence of B. garinii into Canadian mammalian populations could cause Lyme Borreliosis in North Americans with significantly divergent symptoms. Since 60% of the North American population of puffins breeds on four islands off the coast of Newfoundland, it is perhaps safe to assume that migrating songbirds are not the only host to disease-infected ticks.
Finally, I would like to address the recent research which suggests that an increase in the white-tailed deer population is also a contributing factor in the increase of Lyme disease-carrying ticks. It is also a well-known fact that moose are also perfect hosts for ticks and currently there are approximately 120,000 moose scattered across the island. According to a report published by Newfoundland and Labrador's Department of Environment and Conservation, Newfoundland is host to the most concentrated population in North America. Although there is still a healthy population in Newfoundland, recent research on the populations in Manitoba and in the state of Maine suggests that the diseased ticks have become a serious threat in decreasing populations.
Dan: Michele, you have 30 seconds left.
Michele: Okay. The ticks have-moose can carry up to 75,000 ticks. Ticks are making the moose ill and causing a decline in their populations.
In conclusion, I would like to suggest that Newfoundland has only one reported case of Lyme disease, perhaps because, like me, many Newfoundlanders are not aware that their health issues such as fibromyalgia, chronic fatigue syndrome, MS, Parkinson's, Alzheimer's, are in fact chronic Lyme disease and the result of an infection from a Lyme disease-infected tick.
Dan: Michele, can I ask you to share your last point, please?
Michele: Thank you for allowing me to speak at this conference.
Thank you very much.
Dan: We're going to go back to British Columbia and hear from Emily Holmes. Emily, are you on the line?
Operator: Please press *1 to interact.
Dan: Emily are you ready?
Emily: Can you hear me?
Dan: Yes, we can. Please continue, and welcome.
Thank you. My name is Emily. I have alternatively-diagnosed, chronic Lyme-like disease. Alternatively-diagnosed because it's a naturopath that has diagnosed and is treating; chronic because I've been sick for over four years; Lyme-like because I think the naturopath is afraid to call it Lyme, because apparently it's political, and my tests were not CDC-positive but my symptoms suggest Lyme. And there's been no other diagnosis or treatment offered by the medical community despite seeing a nephrologist, a hematologist, tropical disease doctor, infectious disease doctor, neurologist, rheumatologist, neuro-muscular specialist, and three different general internists. And we call it Lyme-like because I'm not a statistic of Health Canada as someone who has Lyme.
In 2014, I had to give up running after two years of debilitating joint and muscle pain, dizziness, fatigue, unexplained increased anxiety, two years of visits to my GP, counselling, supplementing, diet, reducing stress, ruling out internal bleeding and STDs. I remembered I had been bit while travelling in West Africa and had developed a bull's-eye rash, and I was instructed to just talk to the infectious disease specialist about it. And at that time, neuropathy was becoming an issue. I was losing fine motor skills, balance, feeling in my hands. I had to stop working at this point because I could no longer hold my tools.
But when nothing showed up in the blood work, the doctor wouldn't do any more testing, and said, you know, to wait to see what the neurologist says. But I did have a test come back with a (inaudible) it was Rickettsia. It wasn't high enough to be called positive. It just simply indicates exposure. And I asked to be tested again but I was told no because Canada only tests for one strain.
I saw a tropical disease doctor and he decided to do a functionality test and gave me a trial dose of one week of doxycycline. I was ecstatic. But by Day 3, the pain was crippling and crushing. When I followed up with him, he said he'd never seen anyone respond that way unless they had syphilis, and anything that was related was rare and would have shown up on the syphilis test. It was a classical Herxheimer reaction, he said, but he would not do any more testing, give me any more antibiotics, or refer me to anyone else or see me again.
I called the infectious disease doctor back and I was told he wouldn't see me.
And finally, in October of 2015, after a letter to the Patients' Quality Care, the infectious disease doctor finally tested me for Lyme. The Lyme test from Canada was negative. A naturopath I was seeing recommended I get tested in the States for other Rickettsial strains, and I came back indicated on three different strains: Anaplasmosis, Rocky Mountain spotted fever, and typhus. None of the medical doctors would look at it. The naturopath felt that it was reasonable with my symptoms, travel history, cross-reactivity of the tests, and the response that I had had to the doxy that I had some form of Borrelia or Rickettsial multi-system infection.
Almost five years after being bit, I'm finally on a treatment protocol that seems to be helping, but it's not with any medical doctor. It's with the naturopath. I followed up with the infectious disease doctor to let him know I was starting treatment and he threatened that I could not see him if I was going to follow the treatment protocol offered by someone else. After a lot of tears, we came to an agreement that he should at least follow up with me. I'm grateful that naturopaths can prescribe antibiotics, but they're not medical doctors. They play a critical role in our health system but they're limited to what they can do and there are tests that I need to have done to follow up that he can't order, and if the infectious doctor refuses to work with me, it puts me at risk.
Dan: Emily, can I ask you to wrap up, please? You have 30 seconds.
Emily: Yeah, I'm pretty much done here. Health Canada says Lyme is a clinical diagnosis, but none of the medical doctors were willing to diagnose me based on my symptoms or even my reaction to the antibiotics. And I'd just like to thank you for listening and I hope that we can come up with some better systems. Thank you.
Thanks very much, Emily.
Dan: Moving to Ontario to hear from David Leggett. Mr. Leggett, are you on the line?
Operator: Mr. Leggett, please press *1 to share your story.
Dan: David Leggett, are you on the line?
David: Yes, can you hear me?
Dan: Absolutely. Please proceed.
Good evening. My name is David Leggett. I am a husband, a father, an educator. In 2004, I was near the pinnacle of my career, having just completed my first year as a secondary school principal. My family and I went camping across Ontario that summer. Very early on our trek, I was bitten by a tick. I didn't see the tiny beast at the time, but a bull's-eye rash soon showed up, as well as dozens of gradually evolving symptoms such as joint pain, profound fatigue, neurological, and even neuropsychiatric problems.
For over a year, many doctors couldn't explain what was happening. As I got sicker and sicker, doctors would suggest that I had everything imaginable, including psychiatric problems, MS, ALS, post-viral syndrome, etc., but often they would dismiss me or find a reason not to keep seeing me, especially once it became evident that my symptoms were too much like Lyme disease. That disease scared them. It took a lot of guts, knowledge, and experience to treat it, and an attentive physician would usually find themselves the target of a College investigation or worse.
Eventually, after doctors couldn't find anything wrong, I was told to go home and rest and that I would probably get better eventually. I was pretty much on my own.
Finally, one physician recognized the symptoms of Lyme disease and tested to confirm. I was relieved and thought my problems were almost over, but really they were just beginning. Throughout this whole initial ordeal, I had to give up my career and I was slipping fast, but initial treatments were too late given the complex and deeply embedded nature of my illnesses. I was put through the ringer. I became completely confined to bed. I was too profoundly fatigued to roll over or sit up. My family and caregivers had to spoon-feed me. Medical and other costs strained our finances. I was transported to my teenaged daughter's funeral on a stretcher.
This condition has lasted for almost a decade. This is completely surreal. We live in Canada, with a medical system that I have always considered to be world-class. I have treatable illnesses, yet I was mostly abandoned in the face of incomprehension and fear.
Over the years of my illness, I have received critical medical support from just a few heroes. They were brave enough to help me even in the face of intense opposition, accusations, even harassment. They verified that I had a variety of different tick-borne illnesses and that they persisted in me largely due to delayed and inadequate diagnoses and treatments. Under their supervision, I have improved lately due to a comprehensive series of treatments and supports. If I had been properly diagnosed and treated right at the very beginning, early and extended antibiotic therapies would have likely kept my life on course.
According to the Centers for Disease Control in the U.S., roughly 300,000 cases of Lyme disease are estimated to occur in the U.S. every year. Most of these occur very near the border with Canada. It is ironic that ticks without passports stream northward while victims of the diseases they bring have to get their passport, gather significant financial resources, and stream southward for proper diagnosis and treatment.
In spite of my own experience and that of thousands of others in Canada, dealing with Lyme shouldn't have to be a do-it-yourself odyssey. Physicians need to be empowered in helping us back to health. We need a set of guidelines that is representative of our needs, not those based on aversion that is being removed from the U.S. National Guideline Clearinghouse but they are outdated and non-compliant with current standards. We need an honest evaluation of current research and funding needs to materialize to develop better diagnoses and treatments for all tick-borne diseases, and the Canadian Lyme Disease Framework must meet the needs of all of those in Canada, whether they are at risk of being bitten, suffering from a recent infection, requiring blood from the country's blood supply, or people who have persistent infections and ongoing complications like myself.
I am the tip of the iceberg. The problems are escalating rapidly. We cannot afford to sit on our hands and tweak the status quo. People are suffering. Costs for individuals, families, communities, businesses, our economy, society are rapidly mounting. Please be our champions. Thank you.
Thank you very much, David. David Leggett.
Dan: Now back to British Columbia to hear from Caroline Lennox. Operator, please.
Operator: The line is open, Miss Lennox.
Caroline: Hi, can you hear me okay?
Dan: Very well.
Caroline: Okay, great. Thank you.
Dan: Thank you.
Okay. How does someone like me go from being a CEO once making 90,000 a year to not remembering how to open the dishwasher or collate photocopies? The answer is to have Lyme disease and co-infections but not get an early diagnosis or treatment and then be told that it's all in your head.
Before 2009, I was a business professional with a Master's Degree earning 90,000, running 10Ks, cycling 40, training to be a sailing instructor, recently married, living a joyful and full life. After 2009, I lost basic mental functions, was in constant pain, irritable, got lost when I was driving, had rashes, was making mistakes at work.
I went through a revolving door of specialists, finding very little wrong, and I was put on almost every antipsychotic drug out there with very little improvement, but lots of other diagnoses such as (inaudible), fibromyalgia, irritable bowel, depression, anxiety, blah blah. My Lyme test was negative. My GP and I dismissed it due to our lack of knowledge. He closed his practice in 2013 and I had no GP. I kept getting severe, seemingly unrelated, random symptoms and was repeatedly told by walk-in clinics, "You have some kind of virus, dear. Go home and rest."
I lost my job while on disability. I was told my story was not credible. My marriage was strained. My husband, now my ex-husband, had to quit his PhD. program. I could no longer care for my elderly horse, had to put her down. And finally, got an out-of-country diagnosis, but not until 2014.
How am I now? Separated. My credit is destroyed. I have a bleak retirement outlook. I'm on CPP disability of 11,000 per year instead of 90, and that took 18 months to appeal. I'm fighting to get a spousal support agreement with no legal aid funding in B.C. for cases like mine. I have great difficulty walking and doing the basics in life. I'm extremely weak. I fatigue easily. I'm living with many other permanent losses and disabilities.
I'm told no GP will take me here in Victoria because I am immune-deficient. After two years on the wait list, I finally got into the CCDP, which is the Complex Chronic Disease Program, at B.C. Women's Hospital. Sadly, I'm dismayed by the lack of real help and by the misinformation and, sorry to say, actual lies I have encountered. Tens of thousands of out of pocket dollars have been spent from my household.
I want to make two important points. My immune system problems were ignored for years even with consistently abnormal test results. The actual bug, Borrelia burgdorferi, was grown from my blood, yet Canada still denies me diagnosis and treatment. For point one, my immune deficiency was ignored despite repeated test results showing below the lowest line from 2009 to '15, and whenever I asked, doctors dismissed it as meaning nothing. On a chance referral to an immunologist, I was diagnosed as immune-deficient in 2015 and I'm now getting intensive treatment, but no immunologist I've seen will look for the cause. Why was this ignored for so long? Without immunity, I had no chance to fight disease. Why won't anyone look for the cause? Is it because I mentioned the "L" word?
Point two, the blood tests in Canada are a hindrance to proper diagnosis. Health Canada clearly says Canada's test should not be relied on, meaning to diagnose also by symptoms, i.e., clinical, yet I am denied help in Canada because my tests came back negative three times with the same Canadian blood test. However, I have three different positive international tests over three years, including one where the culprit bug was actually grown from the sample. Doctors at walk-in clinics told me, "Those tests are not scientific!" yet they have no information about the labs involved or the tests. One even threw the test results at me in his office.
When I asked the doctor and nurse at the CCDP if I could have a clinical Lyme disease diagnosis, I was told no, that I had to have the (inaudible) blood test done-infectious disease doctor. When I referenced how Health Canada said that nurses-pardon me, a diagnosis should be clinical and not just serologic, the nurse said she knew nothing about it, yet it is on the CCDP's main Web page.
If there's one thing I want everyone to remember or at least learn today, the guidelines that we use are based on research that has been called into question. Many people, including doctors, don't know that our faulty guidelines are based on what some say is "questionable" research, known as deer-borne, which limits the case definition of Lyme to an arthritic knee, which is only about 15% of the cases, and excludes all neurological symptoms. The U.S. Centers for Disease Control, CDC, changed this case definition in '94. I wish I had known this long ago as I was too trusting. Do your research. Decide for yourself. We must not follow the U.S. CDC's guidelines that insist on antibody tests: we don't produce the antibody.
So in wrap-up, I hope this conference won't be dominated by the old guard lobbying and positioning for funding and pushing for a vaccine that simply can't be created due to the antigen variation-nature of Borrelia.
Lastly, I invite anyone who wants to reach me to contact the Canadian Lyme Disease Foundation and ask to be put in touch. My name is Caroline Lennox from Vancouver Island, B.C. Thank you.
Caroline, thank you very much.
Dan: We're now going to go to New Brunswick to hear from Debbie McCann. Miss McCann, are you on the line?
Operator: You may press *1 to share your story.
Debbie: Can you hear me?
Dan: Yes, we can.
Debbie: Oh, great.
Dan: Please proceed, and thank you.
Okay, thank you very much. My name is Debbie McCann and I live in Hoyt, New Brunswick. I'm the Executive Director for the Atlantic Lyme Disease Association, and I'm just going to give you a little bit about my story.
Prior to June, 2009, I was in excellent health and I lived a very active and healthy life. And prior to June, 2009, I only went to see my family doctor probably about once a year for a check-up, and she told me that I was in great shape for my age and that I looked after myself very well.
My husband and I were clearing a lot for a new house in June, 2009, when I noticed a bite on my side which grew into a red, oval rash but it didn't look like a bull's-eye. I researched Lyme disease at the time but the site that I visited only had a bull's-eye rash photo and limited information. I didn't know much about Lyme disease at the time and thought, "Oh, good, it's not Lyme disease." About three weeks later on a motorcycle trip, I felt fatigued, headaches, light-headedness, which were all unusual symptoms for me.
From June, 2009, to the fall of 2012, I had many symptoms all over my body that would come and go such as headaches, fatigue, severe brain fog, pain in joints and muscles, muscle twitching, cramps in my legs and feet, and a buzzing and vibration throughout my body. I had problems with my eyes and heart palpitations, numbness in my hands and feet, along with tremors and many more symptoms. Over a three-year period, I had an MRI, two CAT scans, X-rays, ultrasounds, 24-hour heart monitor, biopsy, many blood tests for autoimmune diseases, and I've probably had a few more tests besides that: I'm quite sure.
I saw several doctors and specialists, naturopathic doctors, dentists, orthodontists, massage therapists, physiotherapists, chiropractors, and I had mentioned the bite that I had in 2009 but not one doctor recognized my symptoms as Lyme disease or even acknowledged that I had mentioned the bite and rash. I journaled all my symptoms as nothing made sense. I wanted my health back and I was not going to stop looking until I did have my health back.
In the spring of 2012, I suspected that I had Lyme disease as there was more information becoming public and it was the only thing that made sense to me. I convinced my family doctor to send me for an ELISA test, but it came back negative and my doctor said, "Well, you don't have to worry about Lyme because your ELISA came back negative." I had a CDC-positive Western Blot test result from IGeneX with six positive bands for Lyme disease.
I received treatment for Lyme disease from a doctor in Plattsburgh, New York, and she also diagnosed me with two co-infections of Lyme, and I also was treated by a naturopathic doctor in Lower Sackville, Nova Scotia. I took four very strong antibiotics for 16 months with no adverse effects and my health returned and I had my life back. The financial burden has been huge. I have taken thousands of dollars from my retirement fund to finance my treatment over time. It has cost me an average of over $10,000 per year and I live pay-to-pay to cover the cost of treatment. I completed my treatment on February 6th, 2016, and I now live a very healthy and normal life thanks to the many Lyme advocates and Lyme doctors who put their license on the line to help me, and I'm truly grateful.
The debate between the IDSA and the ILADS has gone on far too long and they both need to join forces to fight Lyme disease. It's not about who is right and who is wrong, it is about the patients who have been stuck in the middle of this debate for far too long and on a merry-go-round full of diagnostic tests with no answers and no treatment. It is very clear to me that the IDSA guidelines that are currently being followed by Canada are not working or we wouldn't even be having this conversation today. Let's all put aside our differences (inaudible).
Dan: I'll ask you to wrap up, please.
Debbie: … benefit of the patients everywhere before it's too late.
I thank you for your time and I'm hopeful that we will push forward in the fight against Lyme disease together with Lyme advocates, patients, government, and the medical community. Thank you very much.
Debbie McCann, thank you very much.
Dan: We'll now go to Quebec and hear from Maureen McShane. Miss McShane, are you on the line?
Operator: You may press *1 in order to interact.
Dan: Miss McShane, are you on the line? If you are, please proceed. Alright, Operator, we'll continue and accommodate Miss …
Maureen: Hello? Can you hear me?
Dan: Oh, yes. Glad you're on the line. Go ahead, please.
Hi. Thank you for allowing me the opportunity to speak about Lyme disease. My name is Maureen McShane. I'm a U.S.-trained medical physician working in the U.S. and living in Montreal. I'm proud to be a Canadian citizen.
In the summer of 2002, I became acutely ill and experienced the Canadian medical system for the first time. I went to emergency rooms, saw an infectious disease doctor, a neurologist, a rheumatologist, had numerous blood tests, saw a naturopath, a Chinese medical doctor, I had MRI scans, and still no answers. Over the next ten months, I became more debilitated, was not able to continue working as many hours, nor was I able to keep up with my former active lifestyle. Although I saw the possibility of Lyme and did have flu-like symptoms, migratory polyarthritis, and fatigue. I also had an onset during my illness, shaking chills, drenching sweats, uncontrollable tremors, dizziness, a sense of internal vibration, and an indescribable buzzing surge from the base of my brain down my neck, chest, abdomen, and arms when I woke up every morning. I awoke constantly during the night in pain and having to go to the bathroom.
My American Academy Family Practice Journal and other medical articles did not describe these symptoms. Luckily for me, I missed chronic Lyme disease in one of my U.S. patients. Referring him to a neurologist for multiple symptoms, the neurologist was the 25th specialist he saw. The neurologist was very rude to the patient and the patient contacted me and asked for a referral to a Lyme specialist. I didn't think that he had Lyme at that time, but I referred him.
About two years later, as I was struggling to keep up with work home, stuttering, choking on my own saliva, suffering severe cognitive and pain symptoms, I saw him in the office. He had been on antibiotics for two years and his symptoms were gone. I got Dr. Horowitz's name from his chart and went to see Dr. Horowitz ten months after the onset of my illness. Dr. Horowitz made a clinical diagnosis of Lyme and Babesia. I was astounded that he made the diagnosis before lab results and asked him, "Are you sure?"
He said, "Oh, I am."
After a struggle of three days of misgivings, I started multiple antibiotics and antimalarials. A month later, my tests came back and was positive for IGeneX Western Blot, IgG and IgM, as well as Babesia microti. In two years, I had my life back. Since then, I have had to be strict to my diet, sugar-free, and I go on herbs from time to time, but I am full of energy. This was an expensive treatment and not covered by the Canadian medical system. I did not have U.S. insurance to cover it but I am very grateful for my recovery and it was worth every penny.
It is dismaying to me that there are no accurate articles about acute Lyme disease regarding testing and treatment, nor is there anything about treatment of chronic Lyme disease. It just does not exist in my medical journals. I find that there is a void in allopathic medicine in an area that is in great need of attention and research.
Once I began to feel better, two to three months into treatment, I realized that several of my patients had chronic Lyme, not fibromyalgia or chronic fatigue or depression. The first time I have two prescriptions for long-term antibiotics to one of my patients, I thought I would faint. I actually blacked out. For weeks, I worried about losing my medical license. Over time, I saw miracles and I'm so grateful that I was able to turn my horrible experience into something so positive for others and so fulfilling.
I never intended to have my own practice, but patients from Canada and U.S. found me and my supervisor at the walk-in clinic told me I could not see Lyme patients on their time, that I had to come in on my days off. A Lyme patient can easily take one to two hours as a new patient and even follow-up appointments take much more time than a regular patient.
Dan: Maureen, can I ask you to wrap up, please?
Maureen: Yes, yes. As I was feeling better, I started to see more patients and I'm very-I feel very positive about the outcome. I've seen many people regain their health from the experience that I had to where I am now. I'm just grateful. Thank you so much for hearing me.
Thank you very much.
Dan: We're going now to Nova Scotia to hear from Katherine Morgan. Katherine, are you with us? Operator, please.
Operator: Miss Morgan, please press *1 in order to share your story.
Dan: Katherine, we hear you.
Yes, hello. I'd like to make a couple points. I am 25 years old and I actually got bit in Alberta, but across the country, having since moved here, there is no doubt that the ticks are in epidemic numbers here as well.
I suffered 15 years before getting my PCR-positive test through Igenex. I will say that having worked as an occupational therapist, I knew the medical system quite well. I was treated well by the medical system in terms of getting all the tests that one could get to determine if I had indeed Lyme or another infectious disease, but nothing came back positive. We looked at every system in the body.
Until I was ten years into the disease, I decided to go down to the U.S. and I got an Igenex test which came back PCR-positive. I didn't want to believe it myself when I got the test, but I decided to go under the care of a doctor down there and I started oral antibiotics. Six months of that. I didn't have really much improvement. She told me that I would need IV.
Now at this point, I'm off work, I'm on disability, I've lost my career, I've lost everything, my pension, I've lost my life, I've lost my condo, and I don't have a lot of money to be putting towards going and seeing a naturopath in B.C., even B.C., and I was living in Alberta at the time. But I did have the help of a friend three years ago to go and see this naturopathic doctor and he did immediately put me on ceftriaxone. I had the IV. It was remarkably night and day better from receiving it two times.
I spent two weeks out there getting IV and moved back to Alberta, where I was living, and I had a really hard time even finding a nurse to put the IV into my veins. I found a naturopath who would do it on the quiet and I administered my own IV to myself for four months, and that was-it helped me immensely. My brain fog decreased, my pain in my joints decreased, no headaches, my forgetfulness decreased, the ability to put words together, my thoughts together, started to come back to me, and also my sense of humour came back to me.
I then switched over to Bicillin, and Bicillin I injected myself into my gluteal region until-I'd done this for two years, switching different orals at the same time with different herbs. This is an enormous cost, folks. It's like $1,200 to $1,500 depending on which drug and which herb I'm on, which month.
And I want to mention that I had-my son also has this illness through birth. He is nine and I have been treating him with herbs and earlier on with oral antibiotics. He still has symptoms. I still have symptoms. If I stop the treatment, I have this reoccurrence of the symptoms, which I have joint pain and the headache and the fatigue that doesn't allow me to get out of bed. With the current regime I'm on, I'm able to get out of bed halfway through the day. I'm able to cook my son his dinner, take him to what he needs to do in the evening, and see him to bed before I am on the couch. I'm doing this on my own. I'm paying for this all on my own on my disability, from my disability cheque. I'm not getting any help from anyone here.
And I wanted to just note that an infectious disease doctor I had recently seen here in Nova Scotia told me that even though I was symptomatic, I could not get any medical treatment. And this is, in my mind, all other conditions that we see in medicine for even, for example, cardiovascular syphilis, where you have an incubation period of 10 to 30 years, okay? What's done when they're treating tertiary syphilis is CSF retesting, they're doing monitoring of latent syphilis at 6, 12, and 24 months to look at where the levels are in the body and retreated as necessary. We see treatments in terminal cancer, in HIV, in ongoing acne. These are-I know that the tests …
Dan: (Inaudible) to wrap up, please.
Catherine: Yes, the testing in this area is tangible. The testing in Lyme is not so tangible. But people are suffering. Myself, I am suffering, and my son is suffering. We continue to suffer.
My question is and my hope is that the government will step in to offer palliative care for the chronic sufferers as well as all the other sufferers of Lyme, acutely and so on, and that the worldwide community of researchers would be brought in to this conference. And I look at the overview of the conference and I don't see a lot of those researchers being brought in. That's one concern that I also had.
But thank you so much for allowing me to have this opportunity to speak tonight.
Catherine, thank you very much.
Catherine: Thank you.
Dan: Just a reminder for folks in the room, we're not going to be taking a health break, so we're just going to be barrelling on and we'll just continue now.
Now we go to Quebec to listen to Rachel Guinard. Rachel, are you with us? Operator please?
Operator: Please press *1 and ask a question.
Dan: Rachel, are you with us?
Operator: Unfortunately, she is not with us on the phone lines.
Dan: We will continue, and if she comes back, we will try to accommodate her a little later. I'd like to go now to Nova Scotia to hear from Heather Rolfe-Reid. Heather, are you with us?
Operator: Please press *1 to interact.
Dan: Heather, good evening. Heather, are you with us?
Dan: You have the floor, Heather. Over to you.
Okay. My name is Heather Rolfe-Reid and I am from Springhill, Nova Scotia. I would like to discuss my personal horror story of being a Lyme patient in the Canadian health care system.
My story starts when I was misdiagnosed over the phone twice by an infectious disease doctor. When I discovered what appeared to be a classic bull's-eye rash on the back of my thigh in 2006, I immediately called infectious disease in Halifax. Imagine my surprise when I was given an appointment for three months down the road. My family doctor then made two phone calls to infectious disease. Each time, he was told there was no Lyme in the Halifax-Bedford area. They were adamant that Lyme and ticks were only in Lunenburg.
By the time the three-month appointment date came around, it was too late. I was no longer coherent. I had no idea who I was, where I was, or even what I was. My family doctor, he was at a loss. He didn't know what to do with me because, remember, he was told twice that Lyme was only in Lunenburg. I was suffering an excruciating 9 out of 10 pain, 24/7, while having constant seizures. There were no answers for me, and I was soon taken home to be cared for full-time like an invalid patient.
Had I been treated when the rash first appeared, or had I been seen in the acute phase of this disease, my outlook might have been different. Ten years later, I am still under the constant care of my 82-year old mother. At the time of the bull's-eye rash, pictures were sent to a doctor in British Columbia who actually looked at them, called me, discussed my symptoms in detail, and clinically diagnosed me with Lyme disease. Years later, I was also diagnosed via lab tests with co-infections of Bartonella, Babesia, and Mycoplasma. I was also diagnosed with MS, fibromyalgia, depression, porphyria, thoracic outlet, arthritis, chronic fatigue, pain, and a host of other different diagnoses for each specialist that I saw.
Yet with all of those tests and diagnoses, I never had a local Lyme test. However, after a year and a half of finding the bull's-eye rash, a negative ELISA test mysteriously appeared in my file. The name of the doctor who ordered it is "Dr. ID unknown". The test was allegedly taken after the lab closed on a date that I was documented to be home in bed and barely conscious. My doctor never ordered it, yet this negative fake test followed me everywhere I went. Considering I have no idea where it came from, it appears you do not need a Lyme test in Nova Scotia to receive a negative test result.
My Lyme journey went on with continuous trips to ERs and numerous hospital stays. I also became a regular rider in the Nova Scotia ambulance transit system.
The physical, mental, and verbal abuse I endured as a Lyme patient was constant, and here are a few examples.
During a seizure, an ambulance attendant entered my ER room, yelling at me to stop the loud noises and jerking motions from the seizure. He finally picked me up and threw me down on the bed, demanding that I stay there and be quiet. I did report him to the local health authority but they refused to respond to my letter.
During a different seizure incident, the on-call MD told me I better not have another seizure the next day because he was still on call that weekend. This doctor kept me in seizure mode for seven hours, yet he had seen them many times and knew how to stop them. He chose to let me suffer and I do have video proof as well and other reports to prove this.
Dan: Heather, you have 30 seconds left.
Dan: I know, it's not easy.
Heather: Another point, I was asked by a neurologist if the seizures I was having might be related to Wicca and also if I practised witchcraft. I know suffer from severe PTSD and had to have hypnosis to deal with this. To me, health care in Canada should be spelled h-e-l-l-t-h care.
On a final note, the cost to my mother has been well over $200,000 on treatment for me in the U.S. and Canada, therefore I can tell you it is a myth that we have free health care in Canada, especially for those with Lyme disease.
Once again, my name is Heather Rolfe-Reid from Springhill, Nova Scotia. Thank you.
Heather, thank you very, very much for sharing your story.
Dan: We'll now go to British Columbia and hear from Nicole Wiens. Nicole? Operator, if you're on the line.
Operator: Please press *1 to interact.
Dan: Nicole, are you with us? Can you hear us, Nicole?
Operator: Your line is now open.
Hi. Thank you for this opportunity to speak. My name is Nicole Wiens-Temesco and I am speaking from Vancouver, B.C., today.
In January of 2011, I was travelling through Central America when I came down with a fever and flu-like symptoms. I returned home to Canada and eight weeks later I began showing signs and symptoms of Lyme disease: severe joint pain and swelling, headaches, an unexplained rash, and fatigue. Prior to this time, I was a healthy, young woman with no previous health concerns.
The next five years of my life would be consumed by an increasing list of debilitating symptoms and an even longer list of doctors who were unable, some unwilling, to help me. Earlier on, my family physician had the opportunity to see my symptoms as a whole picture, but she failed to recognize that this picture could in fact reflect Lyme disease. I began seeing specialists who would diagnose me based on a small portion of my symptoms that pertained to their personal field of expertise: gout, psoriatic arthritis, costochondritis, fibromyalgia, reactive arthritis, depression, anxiety, viral meningitis, and chronic migraines, to name a few. The lack of knowledge regarding complex issues like Lyme disease leads doctors to misdiagnose and manage symptoms rather than treat the cause. Chronic Lyme disease is evidently an implication of this broken system.
In October of 2015, nearly five years into this journey, I was clinically diagnosed with chronic Lyme disease based on my whole symptom picture through a Lyme-literate physician. During this time, I spoke with my family doctor about testing for Lyme disease in Canada. My doctor referred me to internal medicine to perform testing. I met with the doctor, who then sent me for a number of blood tests. My doctor received the results of this blood work, and to our surprise the Lyme disease testing had not been ordered. My doctor referred me back to internal medicine, specifically requesting that I be tested for Lyme disease based on my symptoms. The internal medicine doctor stated he would not test me for Lyme disease, and if my doctor felt strongly about following up in regards to Lyme disease, I would in fact need a referral to infectious disease. I later found out this doctor noted on my medical file that I did not have Lyme disease, which has followed me to emergency room visits.
While I was awaiting yet another referral, I was needlessly suffering as my symptoms had become severe and debilitating, which led to a series of emergency room visits. I believed that my illness would be met with compassion and care at the local hospital. Instead, I was treated with ignorance and denial, and on two separate occasions I was even offered a prescription for antidepressants while visiting the emergency room for Lyme disease symptoms.
When I finally was able to meet with the infectious disease specialist, I was given five minutes of his time to discuss five years of symptoms and illness. Not only did he deny my doctor's request to perform the testing, but he also diagnosed me outside of his scope of designation with menstrual migraines. He then went on to say that testing would not change treatment as I would now be dealing with a post-viral syndrome, which is about managing symptoms. This lack of care has contributed greatly to the decline of my health.
As of today, I have not been tested in Canada for Lyme disease or for any infectious disease. All of my treatment has been an out of pocket expense and all of my testing has been out of country. Although I am currently treating my illness, I cannot do this alone. We cannot do this alone, and we need the support of the community and the Canadian health care system. We need doctors who are informed about the science and symptoms of Lyme disease. We need better testing and we need better treatments. I work hard and I pay taxes, and until recently I was a contributing member of society, but my health keeps declining and so does my contribution, and that affects all of us, not just those of us with Lyme disease.
Lastly, I have a young daughter and I fear how our health care system will treat her should she ever need it desperately as I do now. Thank you.
Thank you very much.
Dan: We'll now go to-we'll stay in British Columbia and go to Susan Schirk. Operator, please.
Operator: Please press *1 to interact.
Dan: Susan, are you with us?
Susan: Can you hear me?
Dan: We can. Please proceed.
Dan: And thank you for being here.
No problem. So I'd just like to say that Lyme patients do deserve this day, for sure.
So my name is Susan Shirk and I live in Kitsilano, B.C. I've been fortunate to have a career in the legal field, in human resources for 20 years, and the last eight years I've been a real estate agent. I've been healthy all my life. I've been known to friends, family, and colleagues as an avid hiker and a fitness enthusiast. My biggest compliment for me was when my GP told me I was her healthiest patient.
And then between 2009 and 2011, I had very strange symptoms such as facial numbness and tingling, twitches, stabbing nerve pain, and strong heart palpitations. By 2013, I couldn't work anymore. I had severe muscle pain and muscular weakness and symptoms I couldn't even believe could exist.
So, in turn, I was seeing 30 specialists, and to tell you the truth, I don't think Lyme was on the radar at all unless I had a bull's-eye rash. So although I had a negative ELISA test, my friend's husband, an (inaudible), a doctor, suggested I look into Lyme disease privately. So our own B.C. test indicated I was reactive with Anaplasma, as Dr. Morshed said was evidence of a tick bite. I also had three positive Lyme tests, two from a U.S. lab and another from a lab in Germany.
It seemed impossible to get an appointment with infectious disease here in Vancouver. My positive tests were sent to infectious disease by my GP, looking for guidance, and one of your top infectious disease gentlemen responded with a letter declining to see me based on "uninterpretable test results" as well as "well evaluated by others." How did he know I was well evaluated by others sitting behind his desk? I don't know.
When a new positive test arose once again, he also was giving me the same thing, the same comment, in a letter form to my GP. And then I decided to phone their office and request an appointment because I really, really felt like they should see me, and the response letter was I should wait for the CCDP to open. Well, CCDP-and I think most of us know, Complex Chronic Disease Program-did open and they did diagnose me with Lyme disease.
So here I am thinking, you know, how can they not look at me? I have the potential to have Lyme disease and people should be checked as soon as possible because it's a life-changing, debilitating disease which cost me my career. We spent $30,000 a year for private care and treatment, basically part of our life savings. And my husband, who lost, you know, this energetic wife, had to spend 11 hours working in the day and then arrive home to care for me and my son. And our relationship, it took a toll, but we stuck it out, which is so great.
So I was recognized as a Lyme patient at CCDP for over eight months and attended and completed a two-month program which I called Self-care Information. I vowed to myself, if I got better I'd be an advocate for Lyme disease as I faced seriously arrogant doctors. And I'll give you a few examples. The metabolic clinic doctor wrote in my report that I was not to have any second, third, or fourth opinions to my doctor. An ALS specialist told me I needed to see a psychiatrist. St. Paul's Hospital said doctors were refusing to see me. So this was all very surreal. This is not the medical system I thought we had.
So this led me to writing a letter to CCDP about my experiences so they understood, you know, what the experience was like for me, and I shared my concerns about infectious disease refusing to see me three times. Two weeks later, I got called back in and my diagnosis was overturned. So I don't know what to say about that. That seemed odd. So that meeting left no room for discussion. When they called me in, nobody would answer why I was referred to their microbiologist, and he told me all my four positive Lyme tests, even the B.C. one, was false. They also focused on symptoms that he said started in 2011 when I had a stressful event, leaving out the fact that all the symptoms started in 2009. I was also told that Dr. Moreshead from the Center of Disease Control had a strong accent so I must have misunderstood him when he said my reactive Anaplasma was evidence of a tick bite. And I (inaudible).
Dan: 30 seconds; you have 30 seconds, Susan.
Susan: Okay. So truly, it's a tough call. I did get diagnosed by some competent doctors, medical doctors, and I hope this gives you a true insight of the lack of knowledge doctors have and how we're treated. So truly, this is-you know, is this the best our medical system has to offer?
Okay, so thank you for hearing me out, and I hope we see lots of changes.
Susan Shirk, thank you very much.
Susan: Thank you.
Dan: We're now going to Ontario to hear from Bruce Shilton. Operator, please.
Operator: You may press *1 to interact.
Dan: Bruce, you may speak when you're ready.
Good evening. I knew all these stories were out there, and I'm sure all the people in the room can agree with that.
My story is basically that after a legal career of 28 years, both as a lawyer and a judge, I started to become ill. I was worried. I was having difficult following things in court. So I started seeing doctors. I saw 25 doctors over a three-year period, and finally at Sunnybrook, the infectious disease department who, after running a myriad of tests, concluded they didn't know what was wrong with me, I should just go home and make the most of my life. Finally, in 2007, I got an IGeneX test and I've been struggling ever since.
We all know that testing simply by blood does not work. We're told clinical diagnosis is what should happen, but who, who in Ontario, who in Canada, is competent to do that? Very few. So the numbers are suppressed and here we are today.
The other point which I think should be made is that the co-infections are as serious of an issue, as is the Borrelia. I think that's all that I can add at this time.
Bruce, thank you very much.
Dan: Now to Saskatchewan to hear from Candace Uhlik. Candace, are you with us?
Operator: Please press *1 to interact.
Dan: Candace, you have the floor.
Dan: Candace, over to you.
Candace: Can you hear me?
Dan: We can, and please proceed. Thank you.
Okay. Thank you very much. I want to start by saying thank you for the opportunity to speak at this event.
My name is Candace Uhlik. I reside in Christopher Lake, Saskatchewan. I have been diagnosed as having late-stage, chronic neurological Lyme disease that has gone undiagnosed for 20 or more years. I still do not know because I never, ever recall being bitten by a tick. I am currently in Month 7 of treatment with many months or possibly years to go, I am told. Officially, the Borrelia burgdorferi bacteria was found by a naturopathic doctor, along with many other health issues. I subsequently have been seeing an infectious disease doctor, who is a wonderful doctor, who the both of them together I believe has saved my life.
I want to demonstrate the effect that this disease has had on me for the past 20 years by naming some of the health issues that I now experience or have experienced. Going undiagnosed or being misdiagnosed for me has resulted in anemia, metabolic dysfunction, heart inflammation, candida and leaky gut, parasites, fungus, scoliosis of the spine, bone marrow loss in my cervical vertebrae, bone loss in my tibias, degenerative disc disease, arthritis of my cervical and lumbar vertebrae, multiple chemical sensitivity, sudden onset of numerous allergic reactions, the ability for my own body to detoxify. I have also in the past had blood poisoning due to kidney infections, numerous kidney and UTI infections, constant relapsing Herpes simplex on my face, in my eyes, and in my ears, horrible insomnia, radiating and severe pain, severe exhaustion, dizziness, numbness, partial face paralysis of my face and of my limbs, and sometimes the inability to walk. Also, note the cognitive dysfunctions that have resulted in me not being able to work.
Sorry. But according to the physicians and specialists I have seen other the past years, my labs all looked fine and normal, therefore this was all in my head. My naturopathic doctor has in fact told me that I have the body of a 60-year old. I am 39 years old. This disease has aged me over 20 years. Having been treated for fibromyalgia since 1997, I was treated for the wrong health condition. Years of unchecked bacteria in my body, lack of education in the medical system, and the refusal by medical physicians to even consider Lyme disease has put me in the position I am in today. All they had to do was tick off a Lyme disease box, and even though we all know that may have not helped.
I have suffered in silence with this debilitating disease for over half my life, preventing me from living the full life that I used to live and having to explain to my six-year old daughter that some days I cannot even play with her and her wondering why. I also do not have the ability to provide for myself and my family. This is not just the case for me, but for many in the Lyme community.
Today, now that I'm seeing an infectious disease doc, who, verified through a positive Western Blot, has put me on oral antibiotics. Again, I am on Month 7 of treatment, but this has not been an easy task, as we all know that Herxheimer reactions are traumatic in themselves.
Having long-term treatment by a medical physician is not the case for hundreds or thousands more people with Lyme disease in Canada. I was told by a Lyme disease advocate how lucky and fortunate I was to find a doctor willing to treat long term and in my own province, let alone in our country. I am fortunate. I am very fortunate, for many are forced to pay in the five to six digits for treatment in the U.S., not covered by our Canadian health care system. I now get (inaudible).
Dan: You have 30 seconds, please.
Candace: I now get numerous calls asking who this doc is from people urgently looking for long-term, effective care. Today, I now have to live with the fact that this disease controls all aspects of my life and I live in constant fear that I have passed this on to my daughter.
We all know that the two-tier testing in Canada is not specific enough and cannot possibly test for all strains of the bacteria, thus resulting in false negatives. Simply put, I do not have faith and trust in the medical system to accurately diagnose my daughter. In Saskatchewan, it is stated that there are only two cases of Lyme disease, however we all know in Saskatchewan that is not the case because of the CDC criteria used today and the faulty two-tier testing which produces false negatives. I fear for others that may have fallen through the cracks of our medical system. I know hundreds of people in Saskatchewan with Lyme disease and I live in fear that if we wait and take the 'wait and see' approach with everybody, including my daughter, that we are going to have major problems.
I cannot afford to wait, nor can others. I will not let my daughter suffer as I have, like other children, with one having up to 300 seizures daily and forced to go to the United States for expensive treatment. We as a group cannot take the 'wait and see' approach and we can no longer look at this through-with a narrow approach to this complex problem. Thank you.
Thank you very much, Candace.
Dan: We're now going to go to Stanley Boorman in Alberta, but right after him I understand that Rachel Guinard from Quebec is back on the line and we will go to Rachel right after Stanley. Stanley, British Columbia. From Alberta, sorry.
Operator: Please press *1 to interact.
Dan: Stanley, please go ahead. Stanley, are you with us?
Operator: You may proceed. Your line is open.
(Inaudible) okay? Good evening, ladies and gentlemen. My name is Stanley Zimantas. As a scientist, I have lived in Calgary, Alberta, since 1974. I have had Lyme disease since 1992 when I was hospitalized for three weeks due to severe symptoms of what we'd diagnose as Lyme disease today. Over the following years, the infection produced a very wide range of neurological and psychiatric symptoms.
Here's something you don't hear every day. I have recovered from both Parkinson's disease and dementia. Unbelievable, but true. I have recovered from Parkinson's disease and dementia, both of which are considered to be incurable diseases. How is this possible? By the long-term use of antibiotics. For the past two and a half years, I have been and continue to be treated with antibiotics by Dr. Ralph Hawkins. Prior to my treatment with antibiotics, I was taking 16 pills a day of Sudamed for Parkinson's disease, resulting adverse effects. To quote from the neurologist who had treated me for Parkinson's disease, "I wonder if he has a sensory neuropathy from his Lyme disease that was not picked up by EMG testing."
It was not until I found a Lyme-literate doctor that an MRI test was re-evaluated, showing I indeed have Lyme disease. If you don't know what you're looking for, you will never find it.
Also prior to my treatment with antibiotics, I scored 18 out of 30 on the St. Louis University Mental Status Exam, which put me in the dementia level. After approximately 18 weeks with antibiotic therapy, I scored 24 out of 30 on the Montreal Cognitive Assessment, which put me in the mild neurocognitive deficit range. After two and a half years of antibiotic treatment, I continued to show improvement for my neurological symptoms.
Even though my recovery is remarkable, the truth is that what I am saying is not new information at all. If you do a Google search of minocycline and Parkinson's disease or dementia, you will see that this has been apparent for a long time. The efficacy of treating Parkinson's disease with minocycline has been studied since at least 2000. An article published in 2013 concludes that minocycline can effectively protect mid-brain dopamine neurons due to its high penetration into the brain.
Minocycline in Alzheimer's disease, MADE, is an ongoing trial by King's College, London, stating that there is substantial evidence to indicate that minocycline may be neuroprotective in neurodegenerative diseases such as Alzheimer's disease, and that minocycline is cheap and well-tolerated.
For those doctors listening to my story, I plead with you to reconsider your thoughts of using long-term antibiotics to treat these incurable diseases. If it was not for the wisdom of a few doctors, I would continue to suffer from these diseases, inevitably ending up in some care facility or worse. The side effects of long-term antibiotics pale in comparison to the symptoms suffered with chronic Lyme disease.
To summarize, my experience with Lyme disease has shown that, one, my recovery from Parkinson's disease and dementia were due to getting treatment for chronic Lyme disease. If you don't know what you're looking for, you will never diagnose Lyme disease. Left untreated, the infection produces a very wide range of neurological and psychiatric problems. Three, the use of long-term antibiotics is the way to treat chronic Lyme disease. If I had been treated with the standard two to four weeks of antibiotics, I certainly would not have recovered.
Thank you to listening to my experience with Lyme disease.
Stanley Zimantas, thank you very, very much.
Dan: We thought we'd go to Rachel Guinard but apparently she's offline. We'll come back to her and to Carole Herman, who have not been able to connect, at the end of the WebEx presentations. We will now go to Nicole from British Columbia. Operator, please.
Operator: Please press *1 to interact.
Dan: Nicole, are you with us? Alright, we'll …
Operator: Your line is open. You may proceed.
Dan: Nicole, are you there? Okay, we will move on and come back to her at the end of the presentations. We will now go to Alberta to hear from Kimberly Zapesocki. Kimberly, are you with us?
Operator: Please press *1 to interact.
Dan: Hello, Kimberly?
Operator: Your line is open.
Kimberly: Am I there? Can you hear me?
Dan: Kimberly, we can hear you loud and clear. Please go ahead.
Okay, excellent. My name is Kim. I'm from Sturgeon County, Alberta.
I look great. If you could see me, you would say, "Wow, she looks great," as did every doctor I saw over a four-year period. I didn't look sick, so how could I be sick? I sit down to write this speech with high hopes that it will be heard, that it will be taken seriously, and that it could possibly be motivation for movement and change. Unfortunately, I feel that it will be one more lost attempt at all help for Lyme disease sufferers in Canada.
I grew up in Southwestern Manitoba on a horse and cattle farm. Both in Alberta, we moved to Manitoba when I was eight. There were many things to learn moving from one province to another. One of the new things I encountered was ticks. I had never seen a tick in Alberta, but there was no way to miss them in my new home. I quickly learned to check myself each night for ticks: my hair, my body, ears, and toes. I recall even digging them out of my ears as a child. We found several crawling up the walls of our laundry room each morning after leaving our clothing there the night before. It soon became commonplace to pull the ticks off when I found them attached to me, so common that we didn't go running to our parents or teachers, we just pulled them off and kept going. I was soon 17 years old and off to explore the world, to live my great life. I was full of ambition.
It wasn't until I was 35 years old that I began to have mysterious symptoms: deep, agonizing pain, joint pain, the loss of the use of one of my hands, difficulty swallowing, stumbling, slurring speech, drooping facial muscles, memory loss, muscle twitching, hot and cold flashes, night sweats, fatigue, sight issues, bowel issues. I looked for medical care. My neurologist said, "Perhaps MS." My medical doctor said, "Perhaps depression." My rheumatologist said, "Perhaps arthritis or lupus or chronic fatigue syndrome." My infectious disease specialist at the University of Alberta didn't even run any tests. He simply looked at his little paper chart and said, "There are no ticks in Manitoba, so it can't be Lyme disease," and dismissed me minutes into my appointment.
Seriously, four years of doctors and no one could give me an answer. I was dying. I was losing myself. I couldn't work. I couldn't parent. I lost my dreams. I had gotten two Bachelor's degrees, was a songwriter, a school teacher, but that all had to end.
Finally, it was suggested to me that it sounded like Lyme disease. The testing began outside of Canada because my Canadian tests were false and-or, pardon me, negative. My out of country tests at two different facilities came back positive and treatment began. After four years of searching and two years of treatment, I am finally starting to feel better. It has been a long journey and with aggressive, long-term antibiotic treatment I am getting my life back.
Our Canadian doctors unfortunately are not trained about the serious nature of this disease or about the true presence of this disease. The doctors that do believe in Lyme and do believe their patients are afraid to treat for fear of stepping outside of the current, out-of-date treatment guidelines and do not want to risk being punished for doing so, but we suffer, the patient. The one who is suffering at their lowest of low on a daily, downhill decline, forced to further suffer with declined treatment. Isn't that ironic? All because someone-I'm not sure who-insists that we do not have Lyme or its many co-infections in this country.
My middle child began to decline about eight months ago, so I had my three children tested, all showing positive for exposure. Thankfully, only one is symptomatic at this point, and undergoing treatment, so don't even try to tell me that this disease is not crossing the placenta. We are dealing with an epidemic. We are not testing our blood banks, our breast milk banks. We are further spreading this illness to unknowing recipients of our blood supply. Are we teaching the possibility of sexual transmission or congenital transmission? In my opinion, we need to develop specialists in this field. There needs to be adequate doctor training, disability coverage, and better testing established or more treatment-based clinical observations. And every Canadian should be aware of what a bull's-eye rash is and what this could potentially mean for their health. Educate our population, not for the sake of selling a vaccine, but for the sake of saving lives.
In January, with the help of the LDAA, I began the Edmonton Lyme Disease Support Group. In four short months, we are at 20 members and the word is barely out yet. I have had many suffering individuals reaching out for guidance and support. I am sad that anyone else should have to suffer at the hands of this disease that our medical system continues to turn a blind eye to. What I hear …
Dan: Kimberly, you've got 30 seconds.
Kimberly: Where I grew up in Southwestern Manitoba, MS and autoimmune disease are commonplace. Is this coincidence or misdiagnosis? In a country as beautiful as Canada, citizens are being left to drown in their illness and debt, but at least I look great. Thank you for your time.
Kimberly, thank you very, very much.
Dan: We'll now go to Ontario to hear Julie Howlett. Operator, please.
Operator: Please press *1 to interact.
Dan: Julie, are you there? Julie, we're here for you. Can you hear us?
Operator: Miss Howlett, your line is open.
Julie: Hello? Can you hear me?
Dan: Yes, we can. Julie, please go ahead.
Fantastic. Thank you so much. Good evening, everyone. I'd like to take a moment to thank everybody who's raising their voice to share their stories, because our collective voice will hopefully drive change.
My Lyme story began in September of 2013 when I found what I now know to be a bull's-eye rash on my upper leg after a cottage weekend near Bancroft, Ontario. I showed the rash to my husband because it was so remarkable, and we both had thought, "Oh, I must be having an allergic reaction." I had not known about a bull's-eye rash or Lyme disease. I did have minor symptoms, but I chalked them up to being run down due to recently returning to work from maternity leave and lack of sleep that a 15-month old can bring.
Over the next ten months, I ended up at my doctor for numerous issues until I finally was admitted to North York General Hospital with severe neurological symptoms, including loss of feeling in the right side of my face, my head, my right arm, vibrations in my skull, an inability to walk up a flight of stairs, or carry my now two-year old son. Prior to this, I was extremely healthy. And in fact, I rarely saw my doctor except for my regular physical.
I was admitted for an emergency MRI under the suspicion of MS, and the scan fortunately came back clean. When I was visited by my neurologist, one of his questions was, "Have you ever had an unusual bug bite?" Well, as a matter of fact, yes, I had. He said Lyme doesn't usually present this way, but it's worth getting tested with my GP, so that I did. And unfortunately, my ELISA had come back negative.
I started to do some of my own research, and what I learned via many sources, including the Health Canada Website, is that the ELISA has sensitivity and specificity limitations. I then returned to me doctor to request a Western Blot. She was unaware of the two-tier testing and thought that was only for HIV. Nonetheless, she complied and sent off the request. It was returned from the Ministry of Health with a decline, saying that I did not have a positive ELISA in Ontario, and therefore I was not entitled to this test.
At this point, I decided to get tested through Igenex through a naturopathic doctor, which came back for Lyme, positive, as well as two co-infections for Bartonella and Anaplasmosis. I took these results to my doctor and I was completely blown away when she congratulated me for my determination and advocating for myself, and she said to me that she would get me treatment with the famous last words, "Even if I have to give it to you myself in my own office." At that moment, I felt like my nightmare was finally over, but little did I know the most disturbing part of the story hadn't even begun.
After I had not heard from my doctor in a week, I called to follow up and was told that my referral was declined by Sunnybrook Hospital and I should take my test results to an emergency room to seek treatment. I requested that my doctor call me as I know this is not how our health care system is designed to work. In the meantime, I personally called Sunnybrook Hospital and was informed that my referral was declined because apparently Sunnybrook Hospital does not treat Lyme disease. Even though they have infectious disease specialists, they don't feel comfortable treating Lyme.
So when my doctor returned my call, she said that she did speak with someone from the hospital as well and they told her that they do not recognize U.S. testing in Canada, and also warned her that doctors have been reprimanded and lost their licenses for treating Lyme. I was beside myself. In the following week, I decided to go back to her, research in hand, to try to educate her. She informed me that she no longer believed that I had Lyme, and when I requested to have testing in Ontario for the co-infections, both Bartonella and Anaplasmosis, she refused and said, "I'm done with all of this Lyme stuff." Truthfully, I don't believe that this doctor wanted to hurt me personally. She was worried about protecting her license. This should not be the climate under which doctors are expected to provide adequate care for their patients.
I have spoken to many doctors through my connections within my personal network to ask their opinion and they have echoed the fear mongering that goes on within the medical community around the diagnosis and treatment of Lyme in Canada. I was told that my best shot at treatment was to go to the U.S. In fact, many Canadian doctors recommended specific physicians they would send their patients to. I took this sage advice and found a truly compassionate and incredibly knowledgeable physician in the U.S., and today I am well into my treatment and I am almost 100% most days. But like we all know, there are no guarantees and my only lifeline is truly my physician in the U.S.
Dan: Julie, you've got 30 seconds.
Julie: Sure. The last issue I want to bring to the table is that any one of tonight's speakers can go into a Canadian Blood Services location and donate blood. This puts our entire population at extreme risk of infection. Thank you for your time.
Thank you very much, Julie Howlett.
Dan: We have three other speakers who are from the WebEx network that were not on the line. I'm just going to go back to them before I invite those of you who are here in person to speak.
Rachel Guinard, are you on the line? Rachel Guinard. Operator please?
Operator: Please press *1 to ask a question or interact. Your line is open.
Rachel: Yes, hello.
Dan: We're listening. Go ahead.
All right. So, I'll introduce myself. I'm Rachel Guinard and I'm 42 years old. I am originally from New Brunswick, but I live in Quebec. I was most likely bitten in '98 in Moncton, New Brunswick. So that's it. To sum it up, I was diagnosed with multiple sclerosis in 2001. I was treated for 15 years thinking that I had multiple sclerosis. I had medication for multiple sclerosis and for its symptoms that I had. It was only in the summer of 2014 that I had a contact in my family who had had an erythemia migrans. At that time, the person had to see three doctors before being diagnosed and receiving adequate treatment before entering Phase 2 or 3.
So, when I started documenting myself, I saw, I could really see then the similarity between my symptoms, my history, my whole history then compared to what happened with Lyme, long-term chronic Lyme. So, that's it. I thought, well, why not? Because, well I had been living with the disease for 14-15 years and I had really reached the end of [inaudible]. I lost my job, I was living [inaudible] because I was retired. I have been on disability benefits since 2014 now.
So, I'll spare you all the symptoms. I think you know them all for Lyme disease that [inaudible] of the nerve, the neurological level, like multiple sclerosis. The medication, medication I was also taking for multiple sclerosis so [inaudible] Baclofen, everything for neuropathic pain, neurogenic pain, such as Mefika (ph), Baclofen, [inaudible] for the eyes, I was also taking Concerta; I was at the point that I really had memory loss, I was not able to speak, to - I always needed a visual aide. So, that's also why at the end I was no longer able to work. Even at Info-Santé as a nurse it was impossible for me.
So, in short, in 2014, that's it, I knew it was Lyme. I understood very quickly, by documenting myself and also talking with people who were sick and who had been treated [inaudible], that it was not easy and it was lengthy in Quebec. So I did not take - I had no time to lose, especially energy. I looked directly to the States and I received a clinical diagnosis. I also received two diagnoses from Ijenics laboratory. Here in Quebec, I know that the doctors, my neurologist, the infectious disease specialist that I saw told me that it was not reliable at all, that they were charlatans. However, since I took - I started the treatment after being diagnosed, I started an antibiotic treatment with Dr. Manchen who spoke here earlier, just before me [inaudible].
So she has been treating me with antibiotics and other medications also for [inaudible] since July 2015 and I can tell you that I am not taking any medication for multiple sclerosis and I had to - I also stopped the medication, the medication for the related symptoms, such as neuropathic pain. I no longer have any. My bladder improved 50 percent. The cognitive problems are completely gone. I regained my manual dexterity in terms of coordination, my balance. I no longer walk with a cane at all, which was not previously the case; I partially needed it before, for muscle weakness and especially balance. Now I can go up the stairs without holding the handrail. It's like a miracle for me; I am alive again.
Before I always got up in the morning thinking about death, but now I wake up thinking of coming back to life. I'm alive again, finally, and I - I tell myself that today I am still privileged to have cash, the money to go to the States to get treatment.
So I hope that in Canada, Canadians will have that opportunity, the opportunity to have reliable tests, to have such competent doctors who know, who are on the cutting edge of technology too, because there are things they do not know but they are not completely open to receiving information, especially when [inaudible] patients. [Crossed conversations]
Dan: Rachel, you have 30 seconds Rachel.
Rachel: OK. So that's it. It is also the tests, to have reliable tests, updated at the level of healthcare professionals, especially doctors who are also capable of treating without a sword over their heads telling them they will lose their license to practice if ever [inaudible] more than a month of antibiotic treatment in the case of Lyme because in other cases, they can do it, other cases such as syphilis.
Good. That's what I wanted to say. I just want it to come for Canadians so that we have better - better care.
Dan: Rachel Guinard, thank you very much.
On the WebEx line, would Carole Herman still be there? Carole, are you still with us? Operator, please.
Operator: She is not on the telephone line.
Dan: Okay, good, thank you. Nicole from British Columbia, would you be on the line with us? Okay, if that's the case, there are three remaining speakers in the room. We will begin with Mr. Mark Gerretsen. Mark, just take any microphone that you would like to go to. And you can take it off-that's it.
Thank you very much and good evening, ladies and gentlemen. It's a pleasure to be here with you this evening. My name is Mark Gerretsen. I'm the Member of Parliament for Kingston and the Islands, and I can tell you that I believe that Lyme disease is real. In particular, in my riding in Kingston, we like to refer to the problems that we're having with Lyme disease as being the epicentre of Lyme. Of the reported cases in Ontario, 3 out of 100,000 people report having Lyme disease. In the Kingston and Frontenac, Lennox and Addington Health Unit, in which my riding is situated, we have reported cases of 33 out of every 100,000 people, that 33 are being reported with Lyme disease. That means that at least with the reported cases, we have ten times the average throughout Ontario.
Before being a Member of Parliament, I was the Mayor of Kingston. I knew a lot about Lyme. I knew about ticks. I thought I was very well-informed. My wife was always checking our son and was always talking about Lyme disease and ticks and how to be cautious about it. We thought that we had it covered.
About a year and a half ago, my father-in-law, who is a hunter, came and started complaining about a big rash that he had on his leg, and this was probably about 12 inches in length, about 4 inches in width, and ran down his leg. After having, you know, gone to see many different doctors and talking about, you know, the different symptoms, he was diagnosed with having had a spider bite. He was given one week's worth of antibiotics and was told that it should clear up. A few weeks later, eventually the rash did clear up, but about 18 months later, about four months ago, he started getting other symptoms, the typical symptoms, many of which we've heard tonight. He was later diagnosed with Lyme disease. The story goes very similar to make of the stories we've heard tonight.
I just want to conclude by saying that it has been very educational for me to be in this room tonight listening to this. One of the first people that I went to see when I was elected last fall was Elizabeth May. We might not be of the same political stripe but I can tell you that Ms. May is extremely passionate about this particular cause, and I stand united with her to make sure that the federal government does something about this. It is a serious issue throughout Canada. It is something that we absolutely need to deal with and something that I think that, with your work going on over the next three days, we are going to start to see some tangible results come out of this.
Finally, I'll just conclude by saying that the passion, the emotion, what I've heard today is extremely encouraging. I'm going to pass this along. I'm going to talk to my colleagues about it. One of my colleagues, Neil Ellis, the MP for Bay of Quinte, has been here to hear about this. You're doing the right thing by having this, by participating. I know many people probably think this is probably as useless as the 100 other times you've talked about it, but let me assure you that your word is getting-the word is getting out there, you are being heard, and now is the time for action. I truly believe that. And I thank you again for everything that you're doing to bring about awareness.
You can put it on the back of the mic. Thank you. Thanks, Mark Gerretsen.
Dan: Could we hear from Maureen Landry? Maureen Landry, are you in the room? Alright, so if you can proceed to that mic, the floor is yours momentarily. Turn it any way you want.
Maureen: Yeah, I got to talk to the people here.
Dan: Alright, good. Thank you.
Maureen: I don't know if it's on. Is it on?
Dan: It is on and you're good to go.
Okay. I didn't come here tonight to tell you my story. We've heard many eloquent stories tonight that say it all. What I came here tonight to do is to give you my message and a proposal for action. What do we do next? Where do we go from here? That's what I want to talk about.
My career background is health care administration. I was on the senior management team of two hospitals in Ottawa, in both long-term care and acute care facilities. I also worked for the Canadian Hospital Association at the national level, organizing conferences across Canada on national health care issues. I know a health care issue when I see one.
The medical system has failed Lyme patients and continues to fail Lyme patients and their families. My message to Lyme patients in Canada is that we need new legislation. Thanks to Elizabeth May for this legislation, to gather us all together. What's our next step now? This is my proposal.
We need a new bill that will guarantee the right of the patient to access care in Canada, and this new legislation needs to be the very first action of a Lyme Framework for Canada. We need to set the tone for the discussion by saying that the status quo is over.
Legislating patient care needs to be the starting point and the discussion of a framework will flow from that. This conference is a forum and we patients have the power and the opportunity to create new legislation that will guarantee our right to health care for Lyme disease, chronic Lyme disease, co-infections, and related conditions in Canada. For too long, the gatekeepers of the health care system have denied us access to care by their rules. Waiting and hoping the system will catch up has proven useless, and the fact that IDSA guidelines were delisted from the National Guidelines on Quality Assurance has proved those rules were wrong.
We need to be proactive and draft a new bill that will enshrine our right to health care choices and guarantee access to care in this country. Legislation is the only way we'll get the health care we need.
Lyme patients can remove the roadblocks with the support and assistance of our elective representatives. We will draft a bill that will do two things. One, the bill will guarantee the patient's right to access a wide range of health care choices and protocols for their Lyme disease, co-infections, and related conditions, including ILADS protocols. Two, the bill will remove sanctions against physicians who choose to provide care for Lyme, co-infections, and related conditions, using a wide range of treatment options, including ILADS protocols.
Many other jurisdictions in North America have already passed such legislation to ensure the rights of Lyme patients. Those politicians have listened to their constituents' horror stories, recognized the injustice to their citizens, and supported them by drafting and passing legislation to guarantee their access to care and choice in their health care decisions. New York State passed legislation last December. New Jersey, Connecticut, Rhode Island, Delaware, Maine: that's the list and it's growing.
In closing, it is reprehensible that patients are forced to legislate access to care for Lyme disease in Canada, including chronic Lyme disease, but that is exactly what we must do. More legislation for Canadians affected by Lyme must be the first step we take in the Lyme Strategy for Canada. If you wish to join me in getting this done, see me after the session. Maureen Landry, firstname.lastname@example.org. Thanks.
Maureen, thank you very much.
Dan: We'll now go to Kristina Molloy. Are you with us, Christina?
Dan: Alright, and right after Christina we're going to hear from Nicole Boorman, who is apparently back on the WebEx line. The floor is yours, and thank you.
Great. Thank you for the opportunity. It's emotional hearing from so many stories that I relate to and that are similar to my own. I also want to thank, like many others, the Honourable Elizabeth May for bringing an even louder voice to this important issue.
My story is like many others. I contracted Lyme in Penticton, B.C., visiting a friend's farm in 2003. It was interesting because my GP, actually when she saw my symptoms, I didn't have the bull's-eye but I had the severe, flu-like symptoms and she thought I had Lyme disease, so she sent me to an internal medicine specialist. He had me take the test. It came back negative, and then he sent me on my way and told me I would get better eventually.
Then I had varying health issues over a few years. In 2005, I contracted mono and I just couldn't recover. And at that time, I was, you know, being sent to chronic fatigue support groups and there, you know, didn't really seem to be many options. And it wasn't until I met a friend of a friend who had been learning more about Lyme disease and who gave me some more information and made me realize what might have happened.
So at that point, I got the Western Blot treatment in the U.S., which came back positive, and that started a five-year process of trying to identify specialists in the U.S., doing varying treatments that made me feel mostly worse rather than better, and also spending over $30,000 in the process just trying to feel better and be able to get out of bed. I also was not able to get short-term disability, and there's nothing like getting that letter from the insurance company that says that Lyme disease doesn't qualify and you are fit for work when you're lying in bed and can hardly move.
So it wasn't until I found a specialist in Washington State, who gave me this plant stem cell treatment, which was the first thing that worked, and got me back into much better health than I had ever been, and I'm so thankful for that. But I still live in fear of the recurring episodes that I have and she is no longer practising, so it's just been a challenge in terms of trying to continually find new solutions.
In terms of my call to action that I would say, and I'm looking forward to the discussions over the next few days, it's really in four parts.
The first is treatment protocols. So both on the acute condition side to better equip doctors to use system analysis for the instigation of antibiotic treatment. For chronic condition, I think more research is needed for doctors to be better-educated on how to treat chronic Lyme disease in their patients. My experience is that most doctors have heard of Lyme disease but they're not equipped to be able to provide any advice for treatment, especially when it's in its chronic form.
The second is testing, access to better and more conclusive testing options for Lyme disease in Canada.
The third is reporting, recognition that Lyme disease exists extensively in Canada and that the current reporting structures are not reflective of all of us like me who weren't properly diagnosed and had to seek treatment in the U.S.
And finally, research, directed research around more effective treatment protocols, particularly for those of us with chronic Lyme disease.
So I look forward to the discussions and thank you for the opportunity.
Good, thank you very much, Kristina Molloy.
Dan: Okay, I trust that we have Maria Boorman who might be on the line. Operator, please. You'd be our last speaker.
Operator: Please press *1 to interact.
Dan: Maria, the floor is yours.
Thank you so much. Yes, I did recognize the name Nicole, so thank you for waiting for me and finding me.
My name is Dr. Maria Payne Boorman and I'm a naturopathic physician in Victoria, B.C., and I'm calling in to represent 300 members of the Victoria Lyme Disease Awareness and Support Group, 300 very amazing individuals who have been affected by Lyme disease, and I'm honoured that they asked me to represent them. Each of these 300 has a story similar to what I've been hearing tonight and it's heartbreaking to realize how many people have suffered and continue to suffer from the effects of a chronic, tick-borne infection.
I have many hopes for this conference. Primarily, I'm hoping that these previously healthy and vital people no longer have to feel marginalized within the medical system. This rejection has a deep and lasting impact on their health. What could be a manageable illness for most becomes a nightmare of being shuffled from doctor to doctor with no diagnosis and very little meaningful treatment. I hope that common ground can be found amongst some varying opinions on Lyme disease and that medical doctors can feel comfortable giving good advice to patients that have been bitten by a tick or have symptoms of Lyme disease.
I do believe that antibiotics can be used prudently along with other complementary therapies to help patients leave this illness behind them. This is especially true in patients more recently bitten. In long-term, chronic cases, much more research needs to be done to determine better treatments than years of antibiotics. But even in those with long-term, chronic illness, any treatment at all can be highly beneficial and certainly support and a true diagnosis does make all the difference.
Most important to me, though, is the acute management of a tick bite and true prevention of Lyme disease. I feel such a lack of consensus out there and see so many patients, even that have had a tick yesterday or the day before, who go in and are given no treatment whatsoever from a tick bite, even when a rash is developing, and that really frightens me at this stage. I can imagine and understand the controversy over chronic Lyme disease but have a hard time facing the fact that many doctors will not even treat an acute tick bite and ideally prevent any future illness.
So I have so many hopes for this conference and that the next two days will bring about more consensus and that my job will become much easier as a result. As much as I love treating and making a difference in the lives of Lyme patients, I am truly hoping this disease becomes something that is a manageable and simple one.
So thank you very much for your time.
Thank you very much. Ladies and gentlemen, we're being asked to remain in the room for a few more moments because somebody is being taken away by ambulance. I don't know what the situation is (inaudible), but there's three announcements that I'd like to share with you for tomorrow morning.
One is, is there going to be coffee in the morning when people arrive? There will be refreshments? Okay. Those of you who are looking for breakfast, there's a really good cafeteria just down the hall who also has good coffee as well, so depending on your time and when you arrive.
The registration desk will open as of eight o'clock and we will begin promptly at nine.
Female: Do we need to re-register?
Dan: No, you don't need to re-register. Just make sure that you have your nametag with you, and I think those of you who have registered already, you're just fine and ready to go tomorrow, alright? So I will (inaudible) evening, although I will ask you to remain in your seats until we get the word to go.
So by the way, before we leave this evening, I'd like you to join me in thanking sincerely all of our speakers tonight. Merci beaucoup pour ceux qui ont partagé leur histoire.
Dan: So at this point, the evening session is adjourned, but I'll ask you to wait for a few moments until we get the word that we can leave. Thank you very much for your patience.
Report a problem or mistake on this page
- Date modified: