2016 Lyme disease conference public forum 3 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, La Promenade room

Audio Recording


Lise: [5:05]

Good evening everybody. It looks like there are no new people coming into the room so I'd like to get us started. We do not have much time tonight. It is late so we will start. I will repeat my opening remarks in French in a moment. So I'll repeat this initial talk in French but first go through it all in English.

So my name is Lise Hebabi, and I'm honored to be your facilitator tonight. I'm part of the team of facilitators with Dan Normandeau who you've already met, and we've been hired to help manage the process so you can focus on the important conversations that you'll be having over the next two days.

Tonight is about hearing your stories. And so, I'm going to do my best to manage this so that we have as much time as possible to hear the stories and spend as little time as possible moving between stories. My job is simple and extremely difficult because I have to balance the respect for the speaker, and the respect for everybody else who's waiting to speak after you. So if at any point in time, I start to step in and you feel like you're being interrupted, please don't take offense and don't take it personally. I'm only doing my job. So I will have to manage this fairly tightly.

Just as a reminder, we have independent filmmakers filming the whole event. So if you don't want to be captured on video, if you're a speaker, it's pretty easy. Just at the beginning of your talks, take a second to say, "No video, please," and then move on. And they will edit it out, because we don't have people actually manning all of the cameras. So you'll have to let them know that you don't want to be videotaped.

And I will repeat quickly in French because I am trying to keep things brief. So five minutes per speaker. I have a difficult role having to manage the presentations and ensure that you have time to talk but do not take the time of others who will be stuck at the end. So I might have to interrupt. I will do so as respectfully as possible. The video recordings, if you do not want to be filmed, please say so when starting your comments. The camera is aimed here so it will be quite easy.

I'm going to stop it there. Other than to add that my understanding is that tri-chairs will be circulating through the different rooms. So you'll probably see all of them at one point or another over the course of the evening, but I'm not sure exactly when they will be in the room.

The order of presenters was generally alphabetic and then adjusted to allow for changes that people made as they went through. So I'm going to work my way through the list. There's a lighting system here that I will use. It will cue to yellow at four minutes, and cue to red at four minutes and 45 seconds. So that means you've got 15 seconds to wrap up when it goes to red. I've already had one speaker plead with me to be allowed an extra minute. I've said try to avoid that, but I've said that I wouldn't step in too aggressively on that one. So, just so you know that I've already made that mistake.

Alright, so what I'll do is I'll cue the first speaker and let the next speaker know that you're up next. So we can-you can get ready. I'll also invite you to choose. You can come up to the podium to speak. It will be faster if you simply stand wherever you are and turn to face the rest of the group and speak. We have a hand-held mic that is going to be coming around. If you'd like to come to the front by don't want to stand at the podium, there's also a chair for you here. So it will be your choice as speaker to decide how you want to do this.

Our first speaker on the list is Roanne Martin. Where is Roanne?

Roanne: Right here.

Lise: Over there? Okay. If you could come to the front. Again, if you are a speaker tonight, if you could come to the front two rows. There's still a lot of empty seats. It will make it easier to move. You're coming to the podium? Okay. And after Rowan will be Joanne McCarthy. Go ahead.

Roanne: [9:17]

Good evening, everyone. My name is Roanne Martin and I was diagnosed with Lyme disease in May of 2015 through the Western Blot test. I've been affected with a few weeks of fainting and having a seizure in church. I didn't have a bullseye rash and didn't even recall being bit by a tick. I did have about 15 nickel-sized blotches that looked like chicken pox on my upper body.

Previous to fainting, I was a runner and had run through the harsh winter in Blue Point, Ontario, was planning on doing the International Twin Bridge run. I live in a tick-endemic area, near the Pinery Provincial Park. I was notified by the Lambton County Health Unit on the phone of my diagnosis of the Western Blot. I was told I had Lyme disease over the phone.

That was the beginning of my medical nightmare. I quickly learned from my doctor there were no Lyme specialists. I soon realized I would have to head across the border, which I did. I began treatment of doxycycline and within a few weeks, I started seeing my Lyme-literate doctor in Keego Harbour, Michigan. Dr. Alan Markowitz and my family physician worked together.

My first visit there I had bloodwork done and it was to be forwarded to IGeneX Lab in California, a trusted facility dedicated to the testing of Lyme disease and its co-infections. My first visit that day, including the blood testing, cost approximately $500 US dollars. OHIP out of country medical expenses were filled out by my family doctor to no avail. I was turned down countless times. So I've never been reimbursed for anything.

After my short-term sickness leave was expired, the battle was now with the insurance company. I had all the proven results plus I was now on minocycline. I was very, very ill. It had gone into my central nervous system. I had explained everything to the representative who called me. Months later, after my pay was about to run out, I received a letter stating I had been denied coverage. After a phone call with the insurance company, and an appeal, with inside of a week, the decision was overturned, as we questioned who was actually handling my file and what qualifications they had to understand Lyme disease. So it was overturned and I eventually did receive long-term sickness benefits.

The next few months on the drug were terrible. I had more visits to the hospital, ambulance rides, heart palpitations, monitoring on my heart. Mid-December, I decided to take a break and let my body recoup from the multiple round of antibiotics. My Lyme-literate doctor began to discuss having an IV-picc of rocephin placed in me. My Canadian doctor didn't agree, thought that was too harsh.

After a very lengthy discussion, and being very ill in the doctor's office, in early January, and bringing self-advocating to a whole new level regarding this medicine, my doctor went ahead and actually allowed me to have the IV rocephin, after he had spoken with my Lyme doctor, and with an internist who had practiced in Nova Scotia, another endemic area in Canada, and who had treated Lyme patients with IV rocephin with great success.

This is where things in my life began to change. I received nine weeks of this daily IV drug and was monitored every few weeks by both my doctors. There were two other Lyme patients who were also there and that gave us our lives back. They were two young men who had had chronic Lyme disease.

Western Blot is no longer enough and never has been. False results hamper treatment while increasing long-term suffering. We need proper medication. Medications that work on the complicated bacteria in medicine. We need Lyme-literate specialists who know 100% about this-the disease. We need OHIP to stop putting out senseless forms if they are not going to listen to the local physicians and fail to take the time to provide meaningful direction. We need health units not to call us on the phone and deliver hurtful information so impersonally.

It's a shame to watch this health tragedy in Canada. Time for excuses and bureaucratic tape to be cut. It's easy to focus on IV needle use and the many other diseases. How about Lyme? Lyme victims didn't immerse themselves intentionally in tick-laden environments so they could unknowingly contract this disease. We're true victims being ignored for proper, specific healthcare. It's shameful and the blood testing is not utilized to its fullest capabilities for whatever reason.

To this day, I receive weekly physio due to joint complication. I continue with cognitive testing, being followed by my Lyme doctor, and I see an orthopedic surgeon for the pain in my left hip that continues to this day. I will continue to heal as my body cells in for the damage done by Lyme. It's time for a change, Canada, and our story isn't over yet. Thank you.

Lise: [14:11]

Next up is Sally McConnell. Go ahead, Joanne.

Joanne: [14:14]

Good evening. My name is Joanne McCarthy. I'm from the Onondaga Nation, Beaver Clan, from the Six Nations of the Grand River territory. My journey, like other people exposed to Borrelia burgdorferi infection, takes longer than five minutes to share. However, I'll try my best.

I'm also a naturopathic doctor and professor of health sciences, teaching nurses and other healthcare providers. Despite living a healthy life practicing preventative care, one day in April 2011, my world was turned upside down. Initially, my husband and I thought that my episodes of morning nausea and vomiting were because we were pregnant again. But I wasn't. And by June 2011, after multiple visits to my healthcare provider, I was so sick that I couldn't stand on my own.

I went back to seek care and the effort that it took me to walk a straight line in my doctor's office caused me to throw up all over. I recalled having a tick bite in April. The ticks were so bad that year you could actually see the grass crawling. She asked, "Did you get a bullseye rash?" "No, I did not." Then she said, "Well it's likely not Lyme disease because Lyme doesn't exist in this area." So Lyme was dismissed and I was sent for a CT scan.

The x-ray tech looked pale when she came to see me. She said, "The doctors will call you soon." They told me not to travel far from a hospital and that on Monday I would see a surgeon for immediate brain surgery. They didn't know the cause, but I had incredible amounts of fluid on my brain.

On Monday, I saw a surgeon. He said, "How do I know your brain has just not shrunk from alcohol?" And this is where it all began. He would not operate. Instead, the next three years of my life was all about extreme, severe headaches, balance disturbance, incontinence, nausea, severe double vision, muscle and joint pain, and incredible weakness.

I was suspected to be developing premature dementia, because my memory and cognitive functioning was declining so rapidly. My symptoms were managed by pain medication and very painful lumbar punctures every three months. I complained that the relief from the lumbar punctures only lasted two to three weeks. The neurologist said, "Maybe your headaches are from taking too many pain medications." Then he prescribed more. He said, "Maybe if you lost 10 pounds, you would feel better."

Between every lumbar puncture, I ended up in emergency in excruciating pain. Nurses and doctors would whisper, because of my balance and my now slurring speech, that I must be drunk. When I protested to the racist comments, they would say, well I was Aboriginal and I was acting drunk so their line of questioning was justified.

I refused pain medications because of the looks I would get if I related that I need something to help me cope. And I suffered. And my family suffered watching me suffer. I was repeatedly labelled as depressed. And then the doctors would do a CT or an MRI and everyone would be nice to me again.

On October 2nd, 2013, I'm at work. I'm struggling. As I go to leave the building, I can't remember how to get out. I yank on a colleague's door in a panic, and she's an amazing nurse, and she says to me, "Jo, you really need help. I know a surgeon and he'll help you." On October 18th, 2013, this new surgeon performs the VP shunt brain surgery that saves my vision. After three days on antibiotics, I feel some pain from the surgery but I'm actually starting to feel normal. Like, normal thinking-wise. I don't feel pressure or aching pain in my joints anymore. I think about Lyme disease but I cannot be certain. Maybe it was the surgery.

I'm so grateful for my second chance. Then, one month later, off of the prophylactic antibiotics, I rapidly decline and the seizures begin. I repeatedly go back to the emergency. One time, during a seizure, I felt like my lung collapsed. The doctor judged me, and said I was hooked on pain meds. Furious, my partner loaded me into the car and drove me to Buffalo where we bought a CT scan of my chest. A portion of my left lung had collapsed. We go back to emergency and the doctor says, "Well, you know, you can collapse your own lung from holding your breath."

I have more seizures. I'm hopeless and desperate. I go back to my family doctor who has labelled me as depressed. I ask her again about Lyme disease. She brushes me off and says, "Didn't we already do that test?" But it was never done. I seek help in my naturopathic doctor, traditional healer, nursing friends and colleagues. We find out that by doing an IGeneX Lyme test in the-from the States-a lab in the States that it is Lyme disease. We run the extra epitome test with 97% specificity and it's positive.

I take this to my doctor and she sends me to infectious disease. They run the ELISA test. I ask, "Why don't you just run them all? Aren't you curious?" He says his hands are tied in Ontario and he is not allowed to run the Western Blot unless the ELISA is positive. But he can run a test for syphilis and HIV. I'm so upset. My ELISA comes back negative but we don't give up. We all go to our doctors and fake sinus infections and pool a month's worth of antibiotics. I take them all. And in three short weeks, after three years of needless pain, after suffering, brain surgery that might never have been necessary, after destroying my faith in the system of healthcare, I am better.

I recover. My recovery only happened because I combined Western, naturopathic, and traditional systems. My recovery from my emotional trauma continues every time I share my story. Rather than report racism, discrimination, and misconduct, rather than invest in a negative battle, I have chosen to positively grow from this experience. I advocate for Lyme sufferers now, which make up the majority of my new patients.

Lyme is here. I caught my tick in my backyard. I would like to leave you with this challenge: Please find a way to stop the bias and the stigma. Just because you may not yet be able to scientifically explain how to appropriately diagnose Lyme disease, how to treat Lyme disease, and how Lyme disease may or may not manifest itself, that ignorance should not negate, marginalize, or obstruct my right or anyone else's right to healthcare.

I challenge policy makers to recognize this. Listen to your patients and support them by supporting access to all forms of healthcare and we can solve the problem together.

Lise: [20:33]

Thank you, Joanne. Sally, and then next after Sally is Sue McDougall.

Sally: [20:42]

Good evening. My name is Sally and I'm from Kelowna, BC. When I was six, I was bit by a tick in my own backyard. My symptoms started soon after but were dismissed by doctors as growing pains or something I would grow out of. But I never did. Eventually, symptoms progressed to where I was unable to function physically, cognitively, or emotionally.

By the time I was 33, I had gone from doctor to doctor and had a myriad of tests at great expense to the healthcare system. Finally, after a blood pressure spike, I was, by complete coincidence, referred to a Lyme-literate specialist who immediately made the connection. Besides a clear clinical diagnosis from symptoms and patient history, we obtain supporting serological evidence from a private US lab.

After a year of intense treatment, I began to improve. Now, I can think clearly again, do physical activity without crippling exhaustion, and have achieved emotional balance. I continue to improve so much that I'm even going back to school, into the medical field of course. My success isn't coincidence. My doctor treated aggressively, targeting persistent forms of Borrelia, such as cis and biofilm.

In addition, I was clinically diagnosed and treated for Bartonella and Babesia, which brought more improvement. While I am a success story, I know of so many who are still sick, suffering, and undiagnosed.

CDC estimates of the US would put Canada's new yearly cases between 20 and 30,000. Yet, we have just a fraction of that diagnosed. So where are all of these undiagnosed people? In the case of my sister, was diagnosed two years prior to me, she was diagnosed with fibromyalgia, bipolar and food allergies, before a Lyme-literate doctor properly assessed and treated her.

For my husband's sister, it was ringworm, followed later by Sjogren's and a blood clotting disorder. But doctors were stumped by her neurological symptoms. Only in the last month, after my advocacy for her, was she tested. She was indeed positive, but is now so sick she can hardly walk or care for her children. But the story doesn't stop there. My husband tests positive, and his sister's children too.

I'm a part of the Lyme OhOh Canada Facebook group of over 1400 people where we provide support and information to sufferers and their families. We hear from new people regularly who were denied antibiotics despite a bullseye rash. Although many Lyme sufferers don't get it, a bullseye, or erythema migrans, is sufficient for clinical diagnosis of Lyme disease and no further testing is necessary. In fact, a test would likely give a false negative result.

According to the Health Canada Adverse Reaction Newsletter volume 22 issue four, a study of acute patients positive for erythema migrans revealed a sensitivity as low as 38%. That means if you wait for testing, instead of starting prophylactic treatment, you risk missing the window when Lyme is easily treated. It also states that serological tests should be supplemental to clinical diagnosis and that diagnosis should be based on patient history which includes symptoms, exposure to the tick vector, and physical findings. Once the disease disseminated, doctors need to be aware of the signs and symptoms of late-stage Lyme and its associated co-infections. Symptoms can be numerous, or few, and vary from patient to patient.

My husband has very few symptoms, yet is positive. Yet I with a known tick bite and a page of symptoms was negative. Why is that? When tested through a private lab, my Western Blot was full of indeterminate bands, hence why I was negative not once, but twice, in Canada. But with a polymerase chain reaction, or PCR, the DNA was found in my blood, a sure sign of infection.

Many doctors say, "There's no Lyme in our area," or "Lyme is rare." But that's simply not true. Lyme disease has been found in every province and has been endemic to many regions since the nineties, having been spread by migrating songbirds.

In Alberta, veterinarian testing recently found that 13.5% of tested ticks carried Lyme disease. In areas such as the lower mainland of BC and parts of Ontario, it is much higher. My experience illustrates why we need to support a clinical diagnosis and why we need to improve testing in Canada. Along with supporting clinical presentation, a PCR should be used and indeterminate bands considered when making a diagnosis. Our tests are simply not good enough to be relied upon for diagnosis.

We must also study transmission, including sexual and congenital, because, like in my family, there are too many coincidental cases. And we must investigate the link between Lyme and clinically similar diseases such as Alzheimer's, MS, Parkinson's, ALS, fibromyalgia and others, as several doctors have done with eye-opening results.

We need better education, funding for research, more accurate testing to support a clinical diagnosis, and we need to treat those with long, undiagnosed infections sufficiently. I don't want anyone else to suffer as I have. Thank you to Elizabeth May for this initiative and thank you to all of those who made this conference possible.

Lise: [25:49]

Thank you, Sally. Sue McDougall? And next up after Sue is Susan McInnis.

Sue: [25:59]

Mine is on education is key. I suffered over a forty-year period of symptoms that affected my ability to think, walk and talk. And I was misdiagnosed as multiple sclerosis. My relative suggested perhaps I should check out Lyme disease, which I started learning about before my visit with the third neurologist.

Multiple sclerosis was the diagnosis. Treatment was exercise and come back in a year and see how you're doing. During that visit with the neurologist, when the question was asked, "Could this be Lyme Disease?" He said, "No, Lyme is rare. Only 2% of the population ever get it. We don't have Lyme in Canada. This is MS." This only validated what I had read and heard about Lyme disease not taken seriously. I decided to have a blood test done for Lyme disease, paid for out of my own pocket, through a lab in US. The result came back positive for the Lyme bacteria, Borrelia burgdorferi.

When asked about Lyme disease, my retiring family doctor also answered that Lyme disease is rare and we don't see much of that. When I showed him my blood test results, he said, he said, "I don't understand any of this. It's over my head." My new family doctor was asked, "Do you have any patients with Lyme disease?" He said, "No, I didn't have it in my training."

This only reinforces the lack of Lyme disease education and training of doctors. An alternative option was to see a naturopathic doctor. The symptoms of Lyme disease was recognized, along with patient history. The treatment was supplements and simple antibiotics, which reversed the major symptoms. However, long-term antibiotics was necessary to regain my health.

The effectiveness of the guidelines that Canada has been using regarding the prevention, identification, treatment and management of Lyme disease, and the sharing of best practices throughout Canada, is still not recognized by the doctors. A recent incident on May 6th, 2016, which was just last week, when a mother took her eight-year-old daughter into a walk-in clinic, with the classic bull's-eye rash, she was told, "Keep an eye on it."

A person in the health industry of British Columbia recently mentioned that with the history of a tick bite and the bull's-eye rash, the physicians will see that and start a course of antibiotics right away. In this case, as in many, that didn't happen. Doctors are not well informed and patients continue to be deprived of the appropriate treatment that is needed. This debilitating disease is not rare and does exist in Canada. Left untreated, the number of people with chronic Lyme disease will continue to grow. Not recognizing this disease only serves to victimize the person yet again. I thank you for your time.

Lise: [29:14]

Thank you, Sue. Susan? After Susan will be Karen Meyer.

Susan: [29:23]

Good evening. My name is Susan McInnis and I'm from Alberta. I had chronic Lyme disease for eight years. Undiagnosed for three years, I had symptoms that were consistent with Lyme disease but was steadily told that there are no ticks in Alberta, so therefore, no Lyme in Alberta. I found it curious that even when I informed physicians of my work as a flight attendant that had taken me to every province in Canada, several U.S. states, and a handful of countries, that it seemed to fall onto deaf ears.

Well-intentioned physicians could not glance beyond the "no Lyme here" position, nor the possibility of a tick bite. Surely, I could have been infected just about anywhere. And surely, I would be in good hands now that I was home. It presents a challenge to logic. Upon my insistence, I was tested for Lyme disease three times in Canada, each test negative.

As I awaited guidance from the healthcare system, I became severely debilitated. I could not walk unassisted. I could not communicate coherently. I could not leave my home, for once outside, I did not know where I lived, much less, how to get there. Daily seizures were accompanied by a complete loss of control of the entire right side of my body. I lost the fierce independence that I had my entire life. I became a burden, a shell.

All this could have been avoided, had Canadian testing recognized the bacteria when the symptoms began. The current system not only failed me, but in fact, was the cause of several more years of illness.

Completely recovered after diagnosis and treatment in the U.S. for several years, I'm now founder and president of the Lyme Disease Association of Alberta, or LDAA. I want to speak today for the broad cross-section of Albertans with persistent infection of Borrelia. I'm here to speak for the bed-ridden, the cognitively-disabled, the neurologically-impaired. Their stories are tragic, lost beyond belief in a healthcare system within which they cannot find answers.

You might find it surprising how many have been denied access to infectious disease doctors. Most patients are paying for treatment and those who cannot pay in cash are paying the price with the loss of their health. They want to know why. And I'm also here to speak for those that have lost their lives to Lyme and the complications that have surrounded it.

I would like to convey the catastrophic lack of physician awareness in Canada. A "no tick, no Lyme here" mentality is out there. This single-minded and pinpoint focus on the lack of problem is difficult to dispel. And I hope it will be put to rest this weekend. It does not matter when or where or how someone was infected. People must be treated. Testing must change. Clinical diagnosis is imperative as is expelling this reliance on this insensitive and misleading two-tiered system.

Serologic tests should be used to help our physicians confirm a diagnosis. Instead it has been used as a barrier to deny treatment. A barrier to treatment means the sick get more sick. The two-tiered testing is compounding a colossal problem that is helping no one. And lastly, long-term treatment saved my life. Make changes to Canada's testing and guidelines and let long-term treatment save somebody else's life too.

I anticipate that all conference attendees will shed old ways and adopt substantial and significant strategies that address the myriad of problems that are facing us. Together, let's create a future where all Canadians can have access to a timely diagnosis, where access to quality treatment is the norm and it's not the exception. Canadians should be able to test, treat, and trust within the Canadian healthcare system. Lyme organizations are committed to repairing this problem and I hope that our country will now commit to us. Thank you.

Lise: [33:52]

Thank you, Susan. Karen? After Karen is Robert Murray.

Karen: [34:00]

My name is Karen Meyer. I am a registered nurse, daughter, wife, mother of two wonderful children, and I have Lyme disease. I believe that Lyme testing and diagnosis is greatly flawed in Canada and that my story and those of others will prove this to you.

I didn't know in August 2012, when I picked a plump green bug from the cottage floor, that I was staring at an engorged tick. I remember thinking that I'd never seen such a strange looking creature, and I casually tossed it out the front door, returning it to nature. I thought nothing of it, and enjoyed the rest of our family vacation. The next three months, I was plagued with flu-like symptoms: fever, achy joints, fatigue, and vertigo. I could barely get out of bed.

I checked in with my doctor, who thought it was most likely viral. "Rest up, lots of fluids, you'll feel better soon, it will pass." In December 2012, I started noticing that my left eye was twitching all day long. I blamed it on looking at the computer too much. At the same time though, there were days that my left foot was so weak and it just wouldn't participate like it used to. I returned to my doctor, but because she couldn't observe any of my symptoms, I was told to come back if things got worse. By spring 2013, things did get worse.

I started to experience daily headaches that were crushing, and my left cheek twitched all day long too. I knew it was time to get back to the doctor. She was concerned and immediately ordered tests and a visit to a neurologist. He diagnosed my twitches a hemi-facial spasms, but cautions that headaches were not usually associated with the diagnosis. My symptoms continued to worsen. I was now-experienced terrible left pain in my-sorry, terrible pain in my left ear, and I couldn't lay down because my head hurt so much.

I continued to get by but by June 2013, I started experiencing balance problems, numbness and tingling in my left leg and feet, and I became extremely confused. My headaches were off the chart, so in desperation, I walked into a downtown Toronto emergency department. I was given pain medications and referred for follow-up. The next week the neurologist advised that this mostly was much more than just spasms. He immediately arranged for an MRI. The July 2014 report revealed faint, smooth, linear enhancement involving bilateral cranial nerves seven and eight. The radiologist conclusion read, "The differential diagnosis includes: post-viral neuropathy versus alternate processes including Lyme disease."

I reread that report. "Could this be Lyme disease?" I asked the doctor. I knew I was an avid outdoor person who loved to explore nature, hiked in the wilderness, and wore flip-flops through tall grass. And then there was that awful looking bug that I had encountered earlier. "Nope, not Lyme disease. We tested you earlier on in the process and the results were negative." From there, I was referred to several specialists, had multiple MRIs, ultrasounds, CTs, lumbar punctures and blood work, only to be told that there really was no explanation for the inflammation.

"Oh, and by the way," he shared. "Your liver is enlarged too." I would begin steroids to address the inflammation and medication for the headaches. I revisited my hunch at each of my specialist appointments and was ridiculed by physicians who said things like, "How do have Lyme disease when we don't even have ticks in Ontario?" "So you think you have Lyme disease, do you? You and everyone else who walks through my door these days." Or, "Perhaps you're not happy at home or work is too hard for you." I could go on and on. I knew in my heart though that something was very wrong.

I had no reason to be sick. I wasn't making this up. Then one day, a colleague of mine said, "I'm confident you have Lyme disease. I watched David Suzuki's documentary Ticked Off and our testing in Canada is flawed." Enough said. I made some calls the same day and ordered testing kits from the United States and later, Germany. A year and a half after being bitten I finally had an answer. The lab results confirmed that that awful looking bug, the engorged tick that I had stared down at the cottage, had shared with me not only Lyme disease, but anaplasma as well.

Well, the funny thing about looking for answers is often times they are there staring you right in the face. I flashed back immediately to the July 2013 MRI test results. The conclusion, "The differential diagnosis include post-viral neuropathy versus alternate processes including Lyme disease." I remembered how I recounted my history to all of those physicians: flu-like symptoms, facial twitching, numbness and tingling, confusion, inflammation, headaches, and yes, I love the outdoors, and there was this bug.

But the answer, always, "We tested you. You don't have Lyme disease."

Lise: [38:56]

Thank you, Karen. Robert? After Robert will be Rosella Numan.

Robert: [39:06]

I'm Rob Murray. I'm with CanLyme. I feel like throwing the notes away here because we're hearing so much. Thousands of these stories are evidence. I mean, a few stories, maybe they're anecdotal. But these things you'll notice repeat and repeat.

And I'm being treated for Lyme in Maine. I went with a copy of my IGeneX test results but was surprised the doctor said, "No, you have to convince me, Rob, that you've got Lyme disease." "You had a rash? Okay then. And what else? And what else?" And the last thing they looked at was a test, but that's the way it should be. It's to be diagnosed clinically before relying on the badly flawed test. And that's very unusual. But that's the way it should be.

The treatment is a marathon, not a sprint. It is only the use of antibiotic combinations over a long period of time that is proven to be effective. And unfortunately, Canadian experience is that there are almost no physicians that have even minimal training in diagnosing and treating disseminated or chronic Lyme disease, let alone the initial presentations, which can vary. This has to change. We fund the medical system, the medical schools, and pay the salaries of the infectious disease doctors, but have virtually no say in how they perform.

We grant physicians the right to be a self-governing profession. This may have to be looked at again in light of the persistent mishandling of this pandemic. Infectious disease is loyal to its subgroup but not to the population at large that they are supposed to be serving. There's no use pleading for help from infectious disease because we're faced with a cold indifference and psychopathy.

Guidelines for diseases exist for the patients and to assist the physicians in supporting their clinical diagnosis. The bar on the present test is set so high that few can pass. There's increasing incidence of this disease and the number of people left undiagnosed or untreated, the prevalence continues to grow alarmingly ever year. Every year we put this off only makes the problems worse.

Lyme is six times more common than HIV/AIDS, yet the research funding goes to HIV, Ebola, Zika, et cetera. There are over 300 studies on hep C, but only three on Lyme. And these are all 15 years old. The infectious disease doctors do not believe that a chronic form of Borrelia can exist, after a short course of antibiotic therapy, typically three to four weeks, despite having been given evidence from a list of 700 peer-reviewed articles. Everything is done for the benefit of U.S. insurance companies so that they may deny treatments, benefits, and claims. Why should they be allowed to run the show in Canada?

The IDSA and the AMMI have stepped in where they do not belong, between the patient and their treating physician. They do not examine the patients with Lyme, nor do they treat them. Yet they tell a physician, from a very questionable blood test whether or not the patient has Lyme, if they are allowed to treat them, with what, and for how long. The studies only count the classic Borrelia. We know that ticks are cess pools and that other organisms that come along can cause disease as serious as Lyme.

In Lyme disease, we don't care about an exact textbook definition, because of the diversity of organisms out there and the individual differences in responses. The infectious disease doctors have developed a test and confuse the test with the disease. They strive for textbook purity in their description. Our definition would be any infection due to any Borrelia bacteria or in other words, a borreliosis. Presumably, their test agrees with their definition of Lyme disease, and therefore, using circular reasoning, the test must be the right one.

We beg to disagree. We need an outside evaluation of the efficacy of the approved government test. The test should only help support the doctor's diagnosis but doesn't take precedence over it, as is the case now. The infectious disease doctors overstate that it is a difficult, confusing disease to diagnose clinically, so they don't even try, relying on blood serology instead for what is essentially a tissue-borne disease. About 30% of the patients never get a diagnosis. And they overstate the dangers of having a false positive test. This is a complex, multi-system disease that can be taught.

I'll move on to Dr. Steven Phillips. He found one patient, followed them, that had been treated for three years, with seven rounds of intravenous antibiotics and oral antibiotics in between. This patient had never had a positive ELISA test. It turns out the patient was being treated by an IDSA doctor. The patient herself was a physician. So there's different rules. He's treated over 100 physicians himself. Of those 100 physicians, only three or four in turn have treated Lyme-will treat Lyme patients. They don't want to be known as Lyme physicians. So they just kind of turn away. They've been treated, so what. Somebody else's problem.

Today's patients can't wait for tomorrow's medicine and in the end it will be the patients that solve this, perhaps with the use of big data that they themselves provide. We won't give up until we do. Science is a truly revolutionary process. We must be ready for what it might reveal. Challenging established opinion is part of science. Thank you.

Lise: [44:19]

Rosella. And after Rosella is Susan Owen.

Rosella: [44:24]

Good evening. My name is Rosie and I'm so grateful to be here. If you could please try to imagine that you find an engorged tick in your six-year-old's head twice, and you ask if you should be worried. And you're told, "Ticks in Canada don't carry diseases. She'll be fine." But you're not sure. Imagine having your daughter wake up terrified because her legs are paralysed but all her ER tests come back negative. So the doctors decide she's just faking it. She's fine.

But you know something is wrong. When she develops recurrent fevers, strep, tonsillitis, severe body pain, and migraines, you say, "Something is wrong." But the doctors say, "Kids get sick. She has growing pains. She'll be fine." But you're certain. They're wrong. Imagine your teenager missing an average of 68 days of school each year, due to fainting spells, migraines, PMS, chronic bronchitis. The doctors don't know why. But she'll be fine. And you know something is wrong.

Imagine your young adult child going to doctor after doctor, being referred to over 30 different specialists, enduring hundreds of lab and nerve tests, CAT and octreotide scans, x-rays, MRIs, ultrasounds, scopes, and biopsies. Imagine her, your daughter, your sister, your mother, your best friend being given a list of diagnoses all ending with the word syndrome. Fibromyalgia, irritable bowel, chronic fatigue, premenstrual, patella femoral, restless legs, and being told she just has to live with it. And take these pain meds, and sleep meds, antidepressants, and exercise more.

You think, "Doesn't syndrome mean symptoms? So what's the cause?" "We don't know what causes them but she'll be fine." Imagine your 34-year-old wife, mother of your two small children, becoming so ill with pain, fatigue, cognitive dysfunction, insomnia, that she can no longer care for herself, the kids, or the household. So you sell your house, move in with her parents, hopefully for just a few months so that she and your kids can be taken care of. But your once vibrant and outgoing wife continues to go downhill, becoming an unrecognizable shell of her former self.

So three years later, she still relies on you and her mom to take care of her and the kids. To play with them, read to them, make them all of their meals. While she's too sick to get out of bed, or off the couch. You struggle with watching her in pain and confusion, watch her losing weight to near dangerous levels, not able to be intimate because of her severe pain. You watch, helplessly. I've asked you to imagine these scenarios, but I don't have to. This is my life. And this is my story.

And if it wasn't for an amazing naturopathic doctor in 2014, I still wouldn't know for certain that I am fighting for my life against Lyme disease and co-infections. But you won't find my name in the Health Canada Lyme statistics. Why? Because even though I am CDC positive in the U.S., I'm negative on the Canadian ELISA, a test that is severely lacking in accuracy and the number of strains it tests for. I'm here today to tell you that Canada needs change and to implore Health Canada to commit to doing better for the countless of thousands of Lyme sufferers in our great country, and to protect others from having to endure this devastating disease. We need awareness that ticks are found in all parts of Canada, on birds and mammals, in our own backyards and gardens, not just in the woods and tall grass.

Awareness that an EM rash or bull's-eye rash is indicative of Lyme, but is rarely present. And that Lyme is the second great imitator, mimicking dozens of other illnesses, like MS, fibromyalgia, Parkinson's, psychiatric disorders, rheumatoid arthritis, chronic fatigue, Alzheimer's, Bell's Palsy, miscarriages and infertility, and bowel diseases. Lyme should always be properly tested for, before any of these diagnoses are given and those already diagnosed need to be re-examined.

We need to follow the lead of the National Guidelines Clearinghouse and employ ILADS training guidelines to dismiss the IDSA. We need to recognize congenital, sexual and transfusion infection transmission, and provide for research of the same. We need the public and medical staff trained in the only two safe methods for tick removal. We need more and better research and funding that will lead to proper and consistent training for all medical professionals, as well as for access to long-term, complex treatment that is recognized by and covered by provincial health, CPP and disability.

Canada has a massive opportunity to emerge as a strong world leader for the research, diagnosing and treatment of Lyme disease and co-infections, one to be emulated and admired around the world. On behalf of my hundreds of Lymey friends and caregivers and family, I thank you for your time and consideration.

Lise: [49:36]

Thank you, Rosie. Susan? Susan Owen. And after Susan will be Frank Papineau.

Susan: [49:56]

Good evening. My name is Susan Owen and I'm a registered nurse with my Bachelor's degree. In 2004, I developed an expanding bull's-eye rash and flu-like symptoms. The doctor noted a bite mark and attributed the rash and symptoms as a strange reaction to a spider or insect bite, sending me on my way without treatment. These misdiagnoses are still occurring today. I was very active, working, hiking, skiing, et cetera. All that ended with that bite.

As a nurse, I had to switch from 12-hour to eight-hour shifts, and then from acute care to home health, until I finally had to go off on disability in 2007. I have not been able to work since and my quality of life has changed dramatically. I have extreme fatigue, polyarthritis, tendinopathy, fibromyalgia, kidney impairment, high inflammatory markers, and the list goes on and on. If pain, fatigue, and an ailing body that began when I was 32 wasn't enough, I have had to navigate through a broken healthcare system.

I am now 44 and like many Lyme sufferers, I still struggle with getting my illness recognized. One doctor told me that he did not believe in Lyme disease. A rheumatologist said that if I had Lyme in 2004, even without treatment, it couldn't be Lyme now. My own GP banned me from the clinic I attended since birth. I had great hopes when the B.C. government announced funding for a complex chronic disease clinic. Dr. Perry Kendall, B.C.'s provincial health officer, personally assured me that I would receive treatment there. That proved not to be the case and thus left me with no choice but to seek temporary help from another country.

Our healthcare system that I had proudly worked in and believed to be one of the best failed me miserably and many others like myself who have had a negative Lyme test in Canada. After the resignation of four doctors, the Complex Chronic Disease Clinic, which was not following its mandate, became a sham. Its name even changed from Clinic to Program, implying no treatment. One doctor there stated that we couldn't have the same infection rates as Alberta as we have the Rocky Mountains separating us. These mountains are teeming with wildlife that can easily transport infected ticks for miles.

I was told that although Health Canada states, "The expanding bull's-eye rash is diagnostic of Lyme disease," that that is only so in northeastern United States as they have a higher tick infection rate. Since when does Health Canada set guidelines for the U.S.A. and not Canada? To deny a diagnosis because it is a rare illness is criminal. A fellow Lyme sufferer showed me documentation that the B.C. CDC stated that they believed her positive two-tiered testing were false positives. Therefore, she was not treated and is still suffering today.

B.C. CDC primarily relies on passive surveillance. Yet for years, they have told veterinarians not to send them any more ticks. Now they have implemented a hefty fee for vets insisting on testing. The few active surveillance studies that they've done had many limitations. Surveillance in B.C. is severely flawed. And it also helps to-another example is our infection rate has not increased compared to the rest of Canada.

Health Canada needs to do independent surveillance in B.C. I ask, when are we going to get recognition for this disabling disease and receive treatment versus being ridiculed and neglected by our own country? Patients should be included in planning of their own care and given the right to make an informed decision regarding treatment. For me, when I go on antibiotics, my health starts to stabilize. When I go off, I keep getting sick. Sicker and sicker.

We all call upon this government-we call upon this government to see that we receive proper clinical diagnosis to ensure the preferred treatment is given such as those noted in the ILADS guidelines and to protect doctors who treat outside the IDSA guidelines, which have been deleted from the National Guideline Clearinghouse. And also to educate doctors. Our government must also fund ongoing research into Lyme disease including its biofilms, persister cells, and co-infections. Thank you for listening.

Lise: [56:13]

Thank you, Susan. Frank? Frank Papineau. Is Frank Papineau in the room? Okay, so I'll move on then to George Pawlus. And after George we'll have Joanna Petrakis.

George: [56:46]

Good evening, ladies and gentlemen. My name is George Pawlus and I have chronic Lyme disease. I live in Grenville-sur-la-Rouge in Quebec, which is just across the border from Hawkesbury on the Ottawa River. I was diagnosed by Dr. Bernard Raxlen in New York in March 2007 for Lyme disease. I was treated at the Hawkesbury General Hospital by a wonderful doctor who saved my life. I was on ceftriaxone IV antibiotics for six months, then doxycycline for another six months.

I can keep on going about all the pain and suffering that I had gone through including financial losses due to this illness. As all of you, it becomes a repetitious story in a sense. But I'd like to focus on the political aspect of the disease and my story is as follows. I started to feel bad in the mid-2000s. I went full blown in 2007. And I was running around from hospital to hospital, both English and French, institutions in Montreal, even the Ottawa General Hospital, trying to get a diagnosis of what was ailing me.

And needless to say, I was told that there is no Lyme disease in Canada. My medical expenses had spiked. And the Medical Regie in Quebec had sent an investigator to research and interrogate me. This declaration was processed inside of my home in July 15th 2009, and this declaration was inscripted that I have Lyme disease. On December the 3rd 2009, I received a letter from RAMQ, which is the Quebec medical care, that I was not a Quebec resident as of March 1st 1998, and my Medicare card was suspended and that I had to reimburse RAMQ for all the funds disbursed to the medical institutions due to my running around from hospital to hospital.

Then I received a notice from Quebec Elections General that I lost my right to vote. Then I received another letter from RAMQ which read, "Return to Quebec" and they wanted me to sign it. I filed with them that I left Quebec for Ontario in 1977 and returned to Quebec in 1990. I supplied all my documentation which included my passport, Medicare card, driver's licence, property deeds, income tax and more to prove that I am a Quebec resident. I wrote letters asking for help to the Quebec Prime Minister's office, Health Canada, Citizen Protection, Human Rights Commission, College of Doctors of Quebec, Cardinal Jean-Claude Turcotte and others.

I did not receive any help at all, but they threw me under the bus with the letters that they sent back to me. At this point in time, I was not a resident of Quebec nor Canada. I had no status. As my friends were laughing, they said, "You should have asked them for all your income tax back." So I had no access to Medicare. I had to pay all medical bills by VISA and/or cash, cheque, whatever maybe. I even went and got a Blue Cross insurance, because I was worried if I was going to get a heart attack, it costs $150,000, and on the Blue Cross insurance, it was written, "Visitor to Canada".

I had to hire a lawyer and go to court. Finally, after all that and legal expenses, I won the case in March 13th, 2012. RAMQ has crossed and broken every rule in the book which includes Quebec human rights, Canada access to healthcare and human rights, and United Nations' the right to access medical care and human rights. RAMQ was trying to remove me from Quebec and dump me back into Ontario.

All that time I had been promoting Lyme disease awareness and a thorn in their butt. Now that tides have changed and I would like to launch an investigation into this matter by the federal government and would like to speak even with Elizabeth May to see if there is a sector in the federal government that I can approach to file for this investigation, because this is ludicrous. It's being a Canadian citizen and being tossed out of your own country because of Lyme disease.

So when I was down there was no help from any part of the government to assist me. So I hope and would like to not to see anyone have to go through this, what was a botched witch hunt by RAMQ and/or any other public sector of the government, either provincial or federal. Basically, that's about it and the rest of it is just history and the same disease as everyone else had.

I've had neurological problems. I've had visual impairment, ears, cystoscopies, MRIs-five of them. There's four white brain legions that I have in my brain. I have cognitive. I have all types of different problems with my health. Anyways, I'll just end it off. I want to thank you all for giving me the chance to speak my piece with my experience with Lyme Disease and probable cover-ups and this is why we need the government to step up and pass the bills. Thank you very much.

Lise: [1:01:51]

Thank you, George. Frank is actually back in the room, so we'll go to Frank first and then we'll go to you, Joanna.

Frank: [1:02:05]

Hello, I'm Frank Papineau. I apologize. I was in the washroom. So, I've been listening to a whole bunch of stories and I was trying to figure out where I would start. So, simply, I was cutting wood in 2010 in Brockville, an endemic area for Lyme disease, and I'm an outdoors guy. I grew up on a farm. I know what ticks look like. I had a tick on my arm. We took the tick off. It was a little, small nymphal tick. I said to my girlfriend, "I should make a little mark around that because something could be going on here." I said, "We got to watch that."

So four days later, I'm not feeling well and I had a big rash on my arm. I go into the hospital and I say, "The family dog has Lyme disease where I was cutting wood and I'm not feeling well and this is pretty big." "Well, let the doctor see it." I go and you know, emergency room, you wait a couple hours and the doctor looks at it and goes, "No, no, it's nothing."

So, the crazy part of that is that it's a clinical diagnosis based on a tick biting you in an endemic area and you have the rash. I'm trying to figure out what intelligence you would need because Google had that answer. So now, the crazy part is-I'm going to move forward and I'm going to fill it back in-I want to thank a nurse at the civic hospital that, after a bazillion visits, looked at me one day and said, "Mr. Papineau, I think you have Lyme Disease."

And I looked and went, "You're ** me, because that's what I thought!"

So we're going to go back. I had been really sick. I had gotten sicker than-I couldn't imagine how sick I had gotten. I had these adrenaline rushes that were-I had to pull over and have an ambulance pick me up and drive me to the hospital and they're going, "Oh, there's something wrong with you."

I was told I was crazy which is really interesting because I spent twenty years in the television business, producing television outdoor shows all over Canada, I've built businesses, I've built houses. I know I'm crazy because I did all those things. And at the end, at the end, nobody wanted to believe me. But I keep getting sicker and sicker and sicker.

So finally, this is the best part, I convince my doctor that I was having some problems sexually, because I'm a pretty big guy and I like-something's going on. "Oh no, there's nothing wrong with you. I've told you a hundred times, you don't have Lyme disease." Okay, so I asked for a testosterone test to match one that I had before. He says, "Oh, it's normal."

I said, "Well, I want to see the test results."

"Well, I'm going to send you to the best-the best doctor."

I go see him and he looks, he goes, "You have the testosterone level of a 90-year old." He goes, "And you weigh 220. You don't even…"

I said, "Yeah, I think I have Lyme disease."

In that time, I had an IGeneX test and when I called my doctor up, he said it's negative. I got that piece of paper the day I was going down to see a Lyme specialist and on the very front it said less than 40, negative, 40, inequivitable, 80, you have it. I had 40. I'm looking at it, "40?"

I turn the page and it says, "Positive for Lyme Disease." But he said I didn't have it. So consequently, if we go back to this five minutes, I have a minute and 30 left, that five minutes in 2010, when I walked into that doctor, with an EM rash, a history of a tick bite in an endemic area, all he had to do was treat me. That's all he had to do. And it was the guidelines in 2010, it wasn't written new, because I-we become these really crazy people because we become even more intellectually intelligent and that's what I want to talk about here.

Canada follows the United States on what they did. They made the mistake, 30,000 and it was 300. I want this Canadian government to not follow them and do like we've done and be a leader in the world as opposed to a follower of a country that couldn't figure it out anyway. And last time I checked, it came this way. It's not going that way. So that's something we need to consider.

So, am I better today? I absolutely am better than I was, but I have to inject myself every week now to continue to be a man which sucks. I don't do enough to be big and bodybuilding at my age, but you know, it was always a thought. But I'm better. I'm better. There's issues that will never go away. But that five minutes? That five minutes in that hospital room. Five minutes. And I was an idiot. I was wrong, and I had to listen to that for the rest of the time until I got treated.

So, here I am. Thank you very much. I just hope Canada follows our path as Canadians and not paths of Americans. Let's be leaders. Let's be leaders.

Lise: [1:06:50]

Go ahead, Joanna. And after Joanna, we'll have Diane Quigley.

Joanna: [1:06:58]

Hi, my name is Joanna and I have Lyme disease. I'm here to appeal to the humanity that I want to believe still exists here in Canada. But I'm quickly losing faith in its existence in some Parliament members, not all, in the College of Physicians, and in the medical community as a whole. Where is the compassion when it comes to Lyme disease? Where's the 'do no harm' that doctors swear an oath to, but still refuse to treat us? Is that not doing harm?

My story begins June 14 of 2014. I was on a wine tour in Niagara-on-the-Lake and I was bit by a tick. There was nothing in the news about Lyme disease in Canada or ticks. We started seeing it in 2015 in the news and that's they first I'd ever heard of it. It had bit be on the bum, and I actually felt it because I sat on it and crushed in deeper into me. And I jumped up on the bus and yelled, "Something bit me." When I got home, I took a look, which was three hours later because I'm from Toronto. I took a look and saw a bump with a little black dot on it and thought that was a blood blister from a bug bite. I did not think that was actually a bug.

So Public Health did not do a great job at the time of letting the public know that this was here and this existed. I proceeded to get a bull's-eye and it was tiny and really faded so I didn't feel any concern about it. A few days later, I got a huge rash. I got all the symptoms of having Lyme disease. I went to the doctor, told them everything that happened about the bull's-eye, the bite, everything, and was told I just had folliculitis, which is just a rash.

I was given some drugs for it which were not for Lyme disease and I proceeded to get sicker and sicker over the next eight months. It got to the point where I was bedridden and unable to use my legs. I saw 18 doctors and I remember the majority of them kept asking me if I spent time with my friends and maybe I should do that more. They told me I was depressed, but I've never been depressed in my life and I fought every single one of them and told them they were wrong. That they were making me depressed.

It wasn't until I saw the 18th doctor, who's an amazing doctor, and is in his eighties and doesn't see patients anymore but saw me as an exception, spent two hours with me talking about all my symptoms, tested me for Lyme disease, and guess what? I came back positive in Canada for Lyme disease.

Few weeks later-not so happy of a story-a few weeks later, Public Health called me and started asking me questions about my experience. The first thing she said to me, and I'll never forget this, is, "I am so sorry to tell you this, but in order for you to get better, you are going to have to go to the United States."

She said Lyme disease is second from bottom in the list of priorities in vector-borne illnesses. I made sure to write that down to myself immediately when she said it and put it in the computer. I have been going to the US monthly. I spend $4,000 to $5,000 every month and have been doing that since January, 2015. I booked the appointment two weeks after I talked to that public health official.

What I don't understand is how a Canadian citizen can say that out loud. I never in my life thought that I'd have to say that I'd have to spend so far $70,000 to get better. Before spending that, I wouldn't have been able to even stand here. What I don't get is how I can go to the doctor for acne and be given doxycycline for five years, 10 years, 15 years, all my life if I need it, but I cannot get it for Lyme disease past 30 days. What this tells me is that our medical community and the College of Physicians are more concerned with my aesthetic appearance and self-esteem than my physical well-being and quality of life.

I can get Plaquenil for rheumatoid arthritis that helps with that. But it's also a malarial drug for Lyme disease, and people take it for years and a lot take it for their entire lives, but I cannot get it in Canada for Lyme disease. I have been on it for eight months. I did stop it six months ago. In the US, I go to get it. And those painful symptoms are completely gone after eight months of it.

The debate on chronic Lyme disease seems to evolve around that there is no test to prove it is a persistent bacteria and still in the body after 30 days. But there is no test for fibromyalgia, or chronic fatigue syndrome, and yet I can get a clinical diagnosis for those illnesses. When it comes to depression, there's no test to prove it, but I can go into my doctor's office, say I'm depressed and get zopiclone to sleep, get Ativan for anxiety. If I'm a child, I can get Zoloft to feel better if I'm depressed or have anxiety. But I can't get antibiotics for Lyme disease.

I recently had an opportunity to meet David Suzuki and speak with him one on one about the Lyme disease situation in Canada. He said something really profound to me and it was, "Just remember, one person can make a difference and that's all it takes." He is living proof of that fact. I am standing here before you, not just as one person. I'm just one voice but I stand with a whole bunch of others who couldn't be here today because they can't even get out of bed.

I'm with thousands of them and we are no longer going to allow the medical community to ignore us, misdiagnose us, mistreat us, ridicule us, or silence us. We are no longer suffering in silence. We are getting stronger because we're paying for it in the US, and we are raising our voices and we are about to get very, very loud.

Lise: [1:12:34]

Thank you, Joanna. Diane? After Diane will be Roseanna Redmond.

Diane [1:12:47]

Hi, my name is Diane Quigley and I am from the Kingston region. And yes, we have ticks. I'm here tonight for three reasons. One because I myself suffer from Lyme disease. I have a son who I have given birth to during my Lyme disease who is a congenital survivor at this point. Plus, I'd like to introduce you to the 49 people in the Kingston area, none of whom are on the Lyme stats in Canada. These are people that I've met over the last six months since I started my own Lyme group with the help of Lyme Ontario.

I started the group because two and a half years ago, I had had enough of the medical system. I had lived for 13 years prior to that with the assumption that I had Lupus. Before that I was told that I was depressed, I had anxiety, I had post-traumatic stress disorder, on and on and on and on. And each time, I was told that it was something that I was going to have to live with, and I knew that I couldn't live with this. I found out that I had Lyme disease because I had quit. I had gone to the last doctor, an internal specialist who basically told me after reviewing all my information that I didn't even have Lupus. That everybody was wrong and that I needed to go for a walk for 45 minutes a day. I couldn't even walk for five minutes without having to sit at this point.

So I realized that nobody was listening to me, that no matter how loud I screamed or how much I freaked out nobody was hearing me and what I was going through. And I decided that was it. Thank God for luck. And that's the unfortunate part about the Lyme story in Canada, is it is luck. Getting treated is about luck. Finding a doctor who will treat you is about luck. Not getting bit by a tick is luck.

So I ended up going to see a naturopath. My parents had recommended me, because they didn't want me to die. And two hours after talking to this woman, she looked at me and she said, "Have you ever been bit by a tick?"

And I went, "Yeah, but that was back in the seventies." You know? And I had been bit by a tick in New Jersey, where, guess what? We're really close to New Jersey. And when I came back to Canada, they told me it was coxsackie and then it was gastroenteritis and then it was this and then it was that, and I've been sick since I was ten. And as I said, it took a doctor who actually sat and listened to me. Not the doctors who have their five minutes of allotted time to hear our story and say, "Yeah, this is what I think it is."

So starting the group was important for me because I needed to know that there were other people out there. I didn't realize there was so many people that had to struggle like I had. I thought that I was alone. I'm glad to know that even though these people are still struggling with me, they are struggling with me, and I'm not alone anymore. And hopefully, the government and the powers that be will allow doctors to make decisions with their patients and not because of IDSA or CDC guidelines, but because the patient and the doctor consensually decide on a treatment.

I'm just going to end with saying that there are a lot of people who have been diagnosed with chronic fatigue syndrome, fibromyalgia, ALS, MS, and Lupus who all really need to have a good serious look and possibly get Dr. Horowitz's MSIDS test and ask yourself, really, really seriously, "Is there more to what I'm suffering with?" Thanks.

Lise: [1:17:33]

Thank you, Diane. Roseanna? After Roseanna will be Elizabeth Rogers.

Roseanna: [1:17:44]

I danced last night. It was wonderful. It was fantastic. I haven't been able to go out or do anything social in so long. And people came up to me and they said, "Oh look at you! Look at you! Roseanna, it's amazing. You're like, you look normal and you're lively and you're moving and you're agile and you're almost like your old self. And you could not have done this a year ago." And they said, "You're so much better." And they're right.

The gentleman who mentioned the five minutes. Those five minutes are so very important. I was diagnosed in 2009, November of 2009. I had a bull's-eye rash. I went to my local clinic which is north of Kingston, Ontario, and I was told, "We have no Lyme Disease in this area," and you know, "Get out of my office. You're wasting my time." So I went home and I got very, very sick. And I kept going back and back and back. And I said you know, I've read a little bit about Lyme disease. This was back in 2009, but I read everything. And I knew about it. And I said, "This seems to me to be very-you know, some of these symptoms that are happening …" And every doctor-I'd go to various clinics. I went to maybe 15 doctors in the first year because I was so sick. I was so debilitated and everyone would say, "We do not have that here. We do not have Lyme Disease." You know, basically, "You're crazy."

Now, when I was younger, I thought, all these women I see, you know, in my groups, the Birkenstock-wearers with the chronic fatigue and the whining and the aches and the pains. I thought, "I'll never be like that. Because I'm active and I eat well and, you know, I look after myself." But now I am the lady in the Birkenstocks. I'm much better.

But you know, it's to be dismissed so many times by so many doctors. To be told, basically, well the subtext is: "You're crazy, lady. Get out of here." It's totally humiliating. And it's soul-destroying. And I feel so for the people in this room who have gone through similar situations. And I lost my job. I lost my life. We lost a heck of a lot of money because I believed in the system. But after two and a half years, and after waiting for a year and a half to get in to see an infectious disease specialist, and yet another humiliation, because he sat me down, and he said, "You know, we don't have that here. And you don't have that. And if you did, that antibiotics you had for your most recent sinus infection probably would have gotten rid of it anyway." And he lectured me for 10 minutes after I waited a year and a half to see him, on how to prevent getting bitten by ticks. And I thought, "What a waste of money in this medical system." You know, that's our money. All these people and all of these consults for nothing.

Now, about a year after I was bitten, and I was sure I had Lyme, but I couldn't get help, I went to my doctor and I said, you know-it was over a year after I had been bitten-and I said, "You know, I don't want another Christmas to be ruined by this. I, you know, I'm so sick. And don't you think-I've heard about a doctor in Kingston and one of the infectious disease specialists is her friend and she gave her three months of doxy and all her symptoms went away. And like, could you do that for me? Please, please, you know."

This was a new doctor and she said, "You know, I know you're really sick. Okay, I'll give you six weeks." So she gave me six weeks, and this was just before Christmas. And I got a little bit better.

So I went back and I said, "You know, this woman I heard of, this doctor, she got the treatment. I really need it. And I can't work anymore. Please. Please."

And she said, "Well, no. I really can't do that. I'm sorry. I'm sorry, Roseanna."

I cried. She gave me the doxy. She gave me another six weeks. If you have to cry-I mean, I didn't try to cry, it happened, but it's just so ludicrous. It's the luck of the draw, so much of this. You're right, Diane. So much of this is the luck of the draw: who do you see, what protocol do they follow? Because I have friends who have gone in with a bull's-eye rash that will get nothing or they will get-I live in the woods, okay,-or they will get a week of doxy for a bull's-eye. Or they will get two weeks of doxy for a bull's-eye. Or they will get three. Very rarely will anyone get a month.

It's amazing. My husband had a massive headache. I'm not even going to tell you about my symptoms. I was non-functional. I couldn't work anymore. He had this massive headache and it went on for over a week. And I kept saying get into your doctor. He couldn't get into the doctor. I said, "You've got to go see this guy." Finally, it was just so excruciating, he went in. I mean, what guy goes to the doctor for a headache, right? I mean.

He went in, and his doctor never sees him, like maybe once in 10 years. He said, "You know what? You need to go immediately to emergency and get some scans because you have something really wrong with you and I'll write you a letter." So he wrote a letter for my husband, my husband went to emerg., and they did some brain scans. They found out that he had a subarachnoid hemorrhage. It was a brain hemorrhage, and that's what was causing all the pain. And he's had it for a week.

Luckily, I had Lyme and by now, I had a doctor in the States. Because after two and a half years, I gave up on the Canadian system and I went south. So thanks to my experience, my husband was saved. He immediately went on drugs and that saved his life. And I'm actually glad I had Lyme, because now I still have my husband.

Lise: [1:25:17]

Thank you, Roseanna. Elizabeth? And after Elizabeth will be Sandra Romanick.

Elizabeth: [1:25:30]

Okay, so some of you have already heard me espouse where I come from and why, so I'll try and keep this short. My name's Elizabeth Rogers. I was born and raised and will likely die from post-Lyme-not from post-Lyme disease syndrome, but from chronic Lyme disease, if a co-infection doesn't get me first. I will be 70 years old and while I'm not afraid of dying, I figure I have a few good years left to make a difference where, in a world where Lyme Disease runs rampant, destroys lives, fractures family, a world in which it often seems like nobody cares. I want to spend the next 10 years proving I do care, in a real and meaningful way.

I was bit at White Lake in the Whiteshell, a place where apparently everyone knew there was no ticks. But somehow I'd found the only one, that was turned into a bull's-eye rash. And when I went to the doctor, the walk-in clinic, I said, "Look"-I knew something about Lyme because a friend had already got it-and I went into the walk-in clinic and I said "Look, I'm pretty sure that this is Lyme disease. I took the tick off all wrong of course. So could you please give me doxycycline?"

And he said, "We don't have Lyme disease except in Buffalo Point."

I said, "That's it." This is how I learned to advocate. I said I was golfing last week in Buffalo Point. Now, A: I don't golf, and B: I don't even know where Buffalo Point is. I got my doxy along with an admonition: "Don't come back." So he's-that's fine. I have no problems.

Why I-I wasn't going to come to the conference because I honestly felt nothing much is going to happen. This is going to be a wash. And then I thought, "Well that's not very good. If you want to change something, you really need to be there and say it like it is." And what really drove me was last week, hearing our head of public service, health service, stating that Lyme disease has gone down by half last year from the year before. We're the only place in the world. It's gone from 20 to 10. How can that happen? Because I know one of the gals who heads up Manitoba Lyme and seemed to be getting calls every day.

So how could we be down? I thought, "That's it. This man is not getting away with this." So I had to come out here and make my point.

Now I went to him, actually, and said, "Look, I have Lyme disease. It's now been determined that is was where I was at. Who should I go and see?"

Well, he gave me a list of every specialist except for an obstetrician and a pediatrician. I've seen them all. I'd been to them all. And the last one, the neurologist, was the one who-and this again drove me here-was the one who put up his hand when I said, "You know, before you talk about sticking botox in my neck, do you think maybe …"

He said, "You have idiopathic dystonia.

I said, "Isn't that funny? I got idiopathic thrombocytopenia. I got idiopathic this, like, when do you guys ever figure out the source?"

And he said-I kid you not, he did this to me. "Wrong person." He put his hand up in front of me and said, "I don't want to discuss that." He said, "I will send you to the best needle puncture person we have in the city." Needless to say, I didn't go. I didn't want one.

When I had gone to the ID, my favourite the ID specialist, I been to him five times and I send him emails all the time. Plus, he crazily gave me his private number. So I'm on the phone all the time. "Have you learned anything yet?"

Do you know what he said to me I said I have bartonella because I have all these scratches on my back? He said, "You're probably doing it at night when you sleep." Now I got to tell you folks, I can't reach my back, okay? That doesn't take a rocket scientist.

Lise: [1:30:39]

Five minutes.

Elizabeth: [1:30:39]

So at the end of the day, I'm ticked. And what I want to have happen at this conference is I want patient attendance. If they don't, we'll seek you out. Two: I want a balanced strategy. Not this IDSA stuff. I want and expect Jim Wilson to be sitting at the head of the table and if not, he will at least sit to the right hand of the appointed God. I want and expect to be listened to, heard and, understood. I want and expect that this will not turn into another clinic like happened in BC. I want and expect not just words because words are easy. Not just an action because an action's easy. I wanted-I'm going to wait and see the trend. And you better stick with it. And if they don't do it, let me tell you what happens. They've created by bringing us all here, a monster. And the monster is us.

Lise: [1:32:01]

Thank you, Elizabeth. Sandra? And after Sandra will be Michel Savard.

Sandra: [1:32:12]

Okay, thank you for this opportunity to speak at this conference. My name is Sandra Romanick. I reside in the town of LaSalle, which is a suburb of Windsor. I am here because I've had undiagnosed Lyme disease for a quarter of a century. I've only figured it out in the last six months from watching the Housewives. And yeah, I knew I had something horrible. And okay, where am I now?

Over the last 25 years, the medical system in Ontario has spent well over $1 million dollars on me. I've had all kinds of tests and seen many doctors and specialists. My story, give or take, is the same as everyone else. I am here today not to talk about the rest of my problem but to offer up some solutions.

The first thing that needs to be done is to teach the medical community about the signs and symptoms of Lyme. I feel doctors should have a refresher course. Lack of knowledge is embarrassing.

Number two: we should also make the public aware of what Lyme is-wait. We should also make the public aware of what Lyme is through modern advertising, using the internet and media. Public health officials need to get out there and let the public know. Create an advertising campaign.

Number three: there should be a protocol in place to treat people. Doctors should not be afraid of losing their licences. The medical College should take the lead on this.

Four: the federal government, Minister of Health, should be working together with the provincial Ministers of Health. This is a national emergency that needs immediate attention.

Five: based on the literature that I have read, Lyme is misdiagnosed by the medical community. This confusion costs the healthcare systems millions of dollars. There are tests that can be used to quickly address this problem. Tests like the Nanotrap test would be an inexpensive way to see if Lyme is present. With the correct diagnosis, all the money that was spent on me wouldn't have happened.

Six: areas of elevated Lyme occurrences should be addressed. Hotspots should automatically trigger testing of people when they visit their doctor with symptoms.

Seven: new alternative treatments should be brought to the forefront. Treatments like Rife technology, CBT oils, and herbal treatments should be looked at.

Eight: we should also bring the right people together to figure out the new and novel ways to stem the tide of these ticks that carry Lyme into our communities.

In short, I feel that we need a national medical strategy-would go a long way in saving healthcare dollars and addressing this invasion in our way of life.

Thank you for your time.

Lise: [1:35:26]

Thank you, Sandra. After Michel we'll have Stephanie Smith.

Michel: [1:35:34]

Good evening. The failure of the medical system regarding the diagnosis and treatment of Lyme disease and this consequent cover up are truly horrifying and shameful in a country like Canada that values universal access to quality healthcare for all of its citizens. The following story illustrates this point.

I have a friend who has lived all of his life in Quebec. He is under 40 years of age. I know this individual as a result of having joined a group of people who are helping him to stay alive. He is too sick to speak on his own behalf this evening.

This person was living in Northern Quebec as a long-term resident when he believes he was bitten by a Lyme-infected tick about seven years ago. He experiences the telltale rash and other disturbing symptoms right after the tick bite. Almost immediately, he went to the ER and returned several more times in the following weeks. He asks repeatedly to be evaluated and treated for Lyme disease. He kept his tick in a plastic baggie.

The patient was refused treatment until much later when he tested positive to a first test for Lyme. A second test came back negative. One month of antibiotic treatment was then stopped. This individual was known to have various pre-existing long-term conditions from childhood. These included a neurological seizure disorder, multiple chemical sensitivities, and chronic pain and fatigue. These conditions predated the tick bite.

The patient was advised by his GP, who was in the process of retiring, that he should move closer to Montreal to access better medical treatment. When the patient did move closer, to Montreal, instead of being prioritized, the recommendation for prioritization written by the family doctor was lost. Due to various events, he remains without a GP to this day, which is more than five years later.

The patient believes that much of what he experienced in the medical system after this move from a town further north happened as a direct consequence of his repeated requests to be followed up and treated for Lyme. He believes that there is evidence that he was targeted and blacklisted by the centralized regional medical services in the area to which he moved, including the CLSCs, hospitals, clinics, and pharmacies.

More than one doctor became upset with his persistent request for treatment. Some doctors were verbally abusive. The patient became afraid to go see a doctor by himself. Eventually, he made sure that he always had an advocate present at appointments. He made this decision in part because he needed an objective witness and someone to defend his point of view when he met these doctors.

On one occasion after breaking some bones, which were healing poorly, the patient was convinced by medical personnel to check himself in overnight at the hospital. This was supposed to be a way for him to finally get access to qualified medical experts. He was told that the only available bed was in the psych ward. The doctors who evaluated him-sorry-had little interest in his difficulty with his broken bones. The doctor had even less interest in his multiple chemical sensitivities which had previously been documented by another specialist.

Instead, the doctor asked extensive questions about his childhood, his long-term pain management drug regimen, and all manner of questions related to psychological issues. The only treatment plan offered reflected this psychological approach to his many physical problems. He refused treatment. He also refused to stay on for continued observation at the psych ward. He felt he had been tricked. He consequently started an official complaint against this doctor and an assisting nurse and requested that this doctor's reports and recommendations be removed from his medical record. This did not happen.

After these events, in the psych ward, local pharmacies, ER doctors, and walk-in clinic doctors in the region, gave him problems over renewing his long-standing pain prescriptions. The prescriptions for pain medication which have not been adjusted for several years run out before he is allowed to renew them on a regular basis. This leaves him in a non-functional state and in terrible pain. Life becomes an intolerable hell for him.

The patient decided to move out of this area. At the same time, he also made the decision to not talk about Lyme with any new doctors. He did not want to be blacklisted in the new region he was moving to. Blackmail over access to pain medication was effective in keeping him silent over the issue of Lyme.

This Canadian citizen who is severely handicapped has been abandoned by his family and the medical system. He is in intolerable pain. He's on the verge of becoming homeless. Donations by strangers allow him to eat one meal per day. The rest of his social assistance cheque is absorbed by bills and by rent for an unsuitable home that is making him more ill. He is not presently permitted to seek medically-assisted suicide because none of his conditions-sorry-are considered terminal diseases.

I can testify that substantial efforts trying to obtain further help form the social safety net have proven futile. To conclude, my wife and I, along with a few friends of his, have been involved on a daily basis for the last several months in trying to gain access to medical services and social services support for this citizen. It has become apparent that the doors remain firmly closed and that he is being left to die alone and in extreme pain in the backwoods of Quebec. Will anyone hear his screams for help? Thank you.

Lise: [1:40:45]

Thank you. Stephanie. And after Stephanie, we'll have Cristina Soriano.

Stephanie: [1:40:54]

My name is Stephanie Smith and I'm from Toronto. And I'm hoping that what I share with you highlights areas that are missing from most of the discussions that we've had so far.

Primarily, that most people are looking at infections in Canada or the United States. I was infected in Ireland. And for those of us with European infections, our presentations are different. We have-instead of a bull's-eye rash, it comes out as a lymphocytoma, which I presented with on both breasts and that was ignored by an OB/GYN. Now, he was the third doctor I saw very quickly after coming back to Canada, including three dermatologists, none of which asked me to remove my bra, even though I was pointing to growths and marks on my ribcage. The surgeon actually asked me if I'd been in a car accident, because he didn't recognize the marks on my ribcage. That was later identified by a veterinarian, trained in Poland, as a bartonella rash.

Now, part of why I'm trying to highlight this is 23 million Canadians have a valid passport. So why aren't we looking at these issues? Sorry, I'm nervous like everyone else.

When I got sick, I immediately contacted medical attention. I was administered a short course of antibiotics, told to follow up with my doctor once back in Canada. No bloodwork was done. That's where everything started to go wrong, because as most people now know, early antibiotic treatment will then cause problems with the serology.

The other part of this is only the National Microbiology Lab does partial testing for European Lyme. Now, unfortunately, it took until 2011 for me to finally get my blood to that lab. The first blood sample went missing by Public Health Ontario. They claim that was a clinical error, but never heard back as to how could that be, especially since everything was written in Canadian English with a Canadian address on it, how they couldn't have recognized that address. The second attempt finally went through, after every two weeks asking the specialist that ordered the blood, "Did you even make sure that Winnipeg received my blood sample?"

It took until now March, the end of March of 2011, when they finally got my blood. And according to Robbin Lindsay, and his colleagues, they said: "That given that exposure occurred so long ago, and treatment was administered at that time, it is not surprising that the current tests are borderline. Even if those tests were positive, it clearly states those tests are for surveillance purposes only. No doctor in Ontario will accept those tests."

Now I've tried to send my blood to Germany, the United States, and Canada, all on the same day, so that I could compare different blood labs. And isn't it interesting that two labs in the States returned similar bloodwork, showing that I had been infected with two European strains? But again, that gets me nowhere in Ontario.

I have been lucky that I have a group of doctors that have known me before I got sick to know that I was not a Birkenstock-wearing lady as someone made reference to. And I'd like to highlight: these are some of the rashes that will show up for European infections. And to also point out that these lymphocytoma proliferation is the least common of the three dermatological hallmarks of Lyme disease. But yet we're only talking about bullseyes. What about the rest of us, okay? So if the bullseyes are showing up so few and far between, how can doctors not know what to look for on these? It is criminal.

Before I got sick, I had gone back to university for a second degree. I was in my mid-thirties, holding my own playing tier two beach volleyball and indoor volleyball with all these university students. When that happened, and to show, I lost one-third of my body weight, and the only thing that doctors were testing me for was AIDS, okay? Very low risk. Why they kept going to that, I don't know.

The next really odd symptom that would happen: my left foot would swell up every six to eight weeks, starting June the 10th, 2012. Thank God I kept photographs. Thank goodness that I kept photocopies of every lab requisition form to show doctors: you ordered the wrong test. To be able to follow up on things. It took me 11 years before the swelling of my foot was identified, by an infectious disease specialist that then went on to refuse to take my case, but he also identified that that swelling was a protozoa infection and wanted to know when I had been in Africa. I've never been to Africa. That swelling only stopped after 10 months of Mepron and azithromycin treatment, by going to the States, paying out of pocket, going into debt.

The last attempt to try to see an infectious disease specialist is when the swelling started yet again. This time it's both legs. I sat in emergency, was ignored. My GP did the good thing of referring me to an infectious disease specialist, as well as a vascular surgeon, just in case there might have been blockage. The vascular surgeon concurred that it was infectious in nature, because he saw that there was changes when I was on antibiotics and then we waited and waited for a reply from the infectious disease specialist.

The head of the department in the Toronto hospital removed the name of the doctor that the referral had been done to and then said, "And the referral was only for co-infections, not Lyme disease." And said that he will only take me as long as I provide an Ontario Public Health Lyme serology.

And I just want to show quickly. This poster was produced in 1991, has more information on it than anything available from Toronto Public Health, provincial public health, or Health Canada. It even shows lymphocytoma on it. Why are we not providing this factual information to healthcare professionals and Canadians to know what to look for? Why are we only telling them to look for a bull's-eye? Plus, the bull's-eye, they're only showing images on Scandinavian skin tone. In Toronto, the top 15 languages outside of French and English, no one is Scandinavian skin tone. So how are these people supposed to know what to ask for if they don't see themselves reflected in the information that's provided? Public Health has said that it is a low priority regarding Lyme disease to have their two-page document translated, even into the top five languages outside of French and English. It's a disgrace. Thank you.

Lise: [1:48:41]

Cristina. And then after that we'll have Marie Matheson.

Cristina: [1:48:50]

Good evening, everyone. My name is Cristina Soriano. English is my second language, so forgive me.

Today marks the five years and one day that I am sick. It all began with an itch and pain in my leg. I saw there was something attached to my leg. I remove it with my fingers without knowing what it is. Within minutes, pain, swelling, and redness starts to appear. Within five to six hours, I develop a bull's-eye rash. Yes, the classic Lyme symptoms. Common sense tells me there is something wrong so I went to the ER and gave them the insect. I was given a dose of doxycycline. A dose. Just in case.

After four days, I received a call from the ER physician saying that the insect is a female black-legged deer tick and a vector for Lyme disease, followed by a report from the Ministry of Health. I saw doctors after doctors who told me there is no tick in Canada so it's impossible that I have Lyme disease. After showing the evidence and symptoms start appearing, I was dismissed because science dictates that it should be 36 to 48 hours after attachment before a patient could get Lyme disease. So I was prescribed with an antidepressant instead.

My story is not very common: I had the tick, bull's-eye rash, and symptoms, but I am still not taken seriously. If I got the proper treatment in the ER, I am not here in front of you.

In July of 2012, I received an IV treatment for five months. Yes, I got lucky. I got lucky. And I thought, "Yes, I am cured." And so I thought. But another visit from my infectious disease doctor, he told me, "I don't have to see you anymore. You have to continue your treatment through your rheumatologist."

And then it all began. Since I got the tick at work, I filed for WSIB claim, which in Ontario is the Worker Safety Insurance Board. It took four years in the making. Last March or April, it was dismissed because an infectious disease doctor here in the University of Ottawa, denied my claim because the tick should be in my skin for 36 to 48 hours. And I quote, this is from him-where's the camera-this is from him: "Furthermore, although dogs maybe have ticks, there is no evidence of ticks leaving a dog and infecting a human."

And tell me, common sense will all tell us, is this really true? Is this really Canada? CDC states that Lyme disease is transmitted through and by the infected ticks. And in most cases, in most cases, which is in English, has to be 36 to 48 hours needed for transmission. My question is: mosquito bites gives you malaria, gives you dengue, and most recently, Zika virus, so why not a tick?

Another doctor states that there is no tick in my area. Here is a study that proves otherwise. According to the Journal of Applied Ecology , volume 49, issue two, page 457 to page 464, of April in 2012, the ticks will expand 46 kilometres per year. And inhabitants with established tick populations increasing from 18% in 2010 to over 80% by 2020. We are what, four years away from now?

If there is no tick in Canada, why is there an estimate of more than 10,000 cases of Lyme disease annually by 2020? That is from them, not from me. This is form Canadian Adverse-I was tested negative; here's why. This is from Canadian Adverse Reaction Newsletter, volume 22, issue four, October, 2012, and I quote, "In a comprehensive study of 280 serum samples from well-characterized Lyme disease patients, the sensitivity of the two tiered approach was as low as 38%." 38%. For the serum of patients who had erythema migrans during the actual acute phase, and 67% during their convalescence after antimicrobial treatment. In late Lyme disease, the sensitivity increased to 87% for the serum of patients with neuroborreliosis and 97% for serum of patients with Lyme arthritis.

Do we really have to accept this as our standard here in Canada? Is this really our own standard? It's such a shameful affair that in this day and age a country like Canada, where the health system is considered as one of the best in the world, but when it comes to Lyme disease, we are in complete denial. Let us show the world what Canada is really made of. I am calling to all people who are involved in this endeavour to please come to a resolution to find the best solution to this growing epidemic. If not now, when? Please remember, Lyme disease patients' lives matter too. Thank you all.

Lise: [1:54:40]

Thank you. After Marie, we'll have Sarah Surkos.

Marie: [1:54:49]

Hello. My name is Dr. Marie Matheson and I'm a naturopathic doctor in private practice here in Ottawa. I'm an ILADS member, and I want to thank you for providing me with this opportunity to speak on behalf of the CAND, the Canadian Association of Naturopathic Doctors. We felt that it was important to be participating in the Framework development because naturopathic doctors are playing such an important role in getting Lyme patients better.

I have four overarching points I wish to bring to your attention. First and foremost, naturopathic doctors are already working successfully with Lyme patients. I have been in private practice for a decade now, specializing in Lyme treatment, and I have an active roster of about 500 Lyme patients at any one given time. I just saw 30 new Lyme patients last month and treated eight acute tick bites this week. I'm telling you this because people are coming to naturopathic doctors because the rest of the medical system is not providing them with any substantive long-term health gains. They have been to see a countless-of 10 to 15 doctors, before they walk into my doors, before they can get help.

You should know that naturopathic doctors do work collaboratively with medical doctors. This isn't new, except where it concerns Lyme disease treatment. I've seen a slowly increasing number of MDs who see the value in working collaboratively with NDs on Lyme treatment. But when they do not, and this is far more often the case, it manifests in a barrier to proper treatment for patients who are already feeling stigmatized and ignored by Canadian healthcare systems.

What the CAND feels that this Framework should seriously consider is a Canadian-wide Doctor Protection Act. I can tell you that the MDs who have not wanted to participate in Lyme treatment with me have often indicated that it is because they fear losing their licences, which I can understand.

The third point the CAND would like to speak about is the stereotypes related to Lyme disease, and that these must be addressed as they lead to false sense of security by the greater populous and misdiagnosis by doctors. The bull's-eye rash, well my niece and my son never got a bull's-eye rash. They had an angry rash and my niece never even got a rash. I'd say 70% of my patients never see a tick or see a rash. That there's only one infection. We talk about Lyme which relates to Borellia burgdorferi, but what about anaplasma? And rickettsia? And babesia? And bartonella? And the diversity of infections lead to a diversity of symptoms depending on the person's immune system and what they had before the tick bite.

Short course of antibiotics works on acutes. Well, now, in Ottawa area, it's 24-hour-it's basically two doses of doxycycline that are given for one day. In Perth, it's about a week or two. But all of these people are falling through the cracks because they need a minimum of at least six weeks to treat an acute tick bite.

That they are only spread by ticks. Well, in this neighbourhood, right here in New Edinburgh, I've a little girl that was bitten by bat fleas in her attic in a really nice house, and she is now really sick. That the vector list must be expanded to spiders to no-see-ems to mosquitoes to many other different types of insects, along with sexual transmission, breastmilk, and in utero.

The CAND's last point is that we feel that the federal government needs to show leadership in ensuring that naturopathic doctors and indeed all healthcare workers, working with Lyme patients have access to prescription medications that we need for best patient outcomes. For this, the CAND urges this body to consider that expanded prescription rights for naturopathic doctors would greatly assist the rapidly rising level of Lyme patients.

Many times, I have to send patients to walk-in clinics when I know I could have prescribed the right treatment. I can tell you that my ND counterparts in British Columbia have prescription rights and have been working successfully without incident for years.

The CAND wishes to thank you for this opportunity to participate in this very important initiative. If we can play a more active role in the creation of the Framework itself, or can answer any questions to provide you with any further guidance, we are at your disposal. Thank you.

Lise: [1:59:26]

Thank you. Is Sarah there? And after Sarah is Richard Underwood.

Sarah: [1:59:36]

Hi, everyone. So my name's Sarah and I have a typical Generation X family. My husband and I serve to cater to our busy children, jobs, while trying to keep afloat. I'm just a working mom.

Our story starts with my daughter's chronic Lyme diagnosis. A provincially-ranked, competitive athlete, a straight A student. Looking back, we can see her whole life she had symptoms that doctors tried to explain away. The explanations sounded reasonable to me. Monthly relapsing fevers of 104 were growth spirts. Monthly antibiotic for lung infections was daycare syndrome. Buckling pain in her knees was sports issues. Who was I to question the doctors? I'm just a working mom.

Leading into her teenage years in 2015, she started getting headaches that she described were like ice picks chipping at her head. She was blacking out, complaining that her heart was jumping out of her chest and saying she couldn't breathe at times. We had no clue what was going on. We were referred to lots of doctors. Once her diagnostic tests came back, the common theme was: there's nothing wrong with her. Maybe she should speak with a psychiatrist. And then they'd go into asking about school, friends, puberty, and drugs. I don't know how many times I said, "Please look further. Something's wrong. This is not my kid." But who am I? I'm just a mom.

By the summer 2015, she was completely bed-ridden. She would leave the dark, quiet room for about 20 to 30 minutes a day. We thought we had lost our child forever. It was at that point that we made the biggest mistake and regret a parent can make. We gave up on our kid. We started believing the doctors. After all, we'd seen over 25 of them.

We started touring psychiatric facilities. All we cared about was saving her. We were scared and out of options. Prior to admitting her to a facility, I got a phone call from a dear friend, one that I attribute to saving my daughter's life. She had read something about Lyme disease and wanted me to check it out. Everything finally started to make sense. We immediately tried to get Canadian testing done but both my pediatrician and my GP had no clue even how to order a Canadian test.

They started arguing with me that she didn't have Lyme because Lyme didn't exist in Ontario. This was this year or last year. And she didn't have a rash. We eventually got American testing done, where she was tested off the charts positive. We took her to Toronto Sick Kids' infectious disease clinic, thinking we would be the family to invoke change. She had 100% clinical diagnosis for every symptom. She was off the charts positive. We had all the documents, including all her lab works, guidelines, the ILADS guidelines, all her test results.

Well, guess what? We got denied care. Who was I? I was just a mom who read too much this time on the Internet. I lost it that day. The doctor tried to convince me about the Canadian test, how far superior it was and I started to argue the facts. He turned his back to us and sent us home, ordering another round of lab work and scheduled a follow up appointment a month away. I asked him how he could morally send my daughter home without-when she had been bed-ridden-sorry, bed-ridden for months.

As he walked away, he looked back at me and said, "Maybe you should take her to the teen clinic." Yeah, he went there. He suggested I go to psychiatry. We were back at square one. Needless to say, we never went back.

I cried for days after that appointment. I started calling doctors after doctor, media outlet after media outlet, begging anyone and everyone for help. We finally ended up with a fabulous LLND who just spoke, here in Ottawa, and an LLMD in New York, who work together to manage my daughter's care.

I am happy to say that after nine months of treatment, my daughter has slowly started returning to school and swimming. We have a long road ahead of us, but we've already learned a lot along the way. What I've learned: I've not been ill for 15 years with MS; I too have chronic Lyme. I gave it to both of my children in utero without knowing it. If you have been exposed to Lyme, you will give it to your children without protection.

I'm not a tired, middle-aged woman. I'm a chronically ill mother who has had to radically change her family's lifestyle, diet, and most of all, our budgets. We've had to refinance our house to pay for all our medical treatments, natural and medical. We don't even get healthcare benefits or tax benefits for the natural. The medical system in Canada has failed and continues to fail many people and families by denying them treatment for this horrific disease. Chronic Lyme does exist. Certain things may be for sale, but my health is not one of them. I'm not just a working mom. My name's Sarah and I am a Canadian working mom fighting for my family and the families for others across Canada.

Lise: [2:04:54]

Is Richard Underwood here? Yes? Okay.

Richard: [2:05:10]

So is this timer, is it going to count down to scare me?

Lise: [2:05:14]


Richard: [2:05:14]

Oh, man. Okay, well, I know you guys didn't come for me, but thanks for coming. So my name's Richard Underwood, and so I wrote down what I wanted to say mostly, so the Lyme diagnosis is not accepted in Canada. But depression, anxiety, and diabetes, and such, are accepted in Canada when diagnosed in the US.

My second point was for my ELISA test, it took them three weeks to come back which is also what Dr. Richard Rusk, which is a doctor, like Manitoba Health, and anyways, which was my experience, so I just thought that: need to put more money into faster test results to reduce the amount of acute cases that can develop into chronic cases. If not, these patients will hurt the economy by working less or use up more social service funding and will cost much greater amount of healthcare dollars and future health problems down the road. Earlier treatment proven much less costly and more simple.

And then for me personally, I saw 13 specialists in Canada and then it was kind of a last ditch effort to go to the US to see a-because I was just told, you know, you're good, your tests are normal. And I had countless testing and the Lyme ELISA test was never considered until eight years-until I asked for it eight years after I contracted Lyme. And it never came up during a conversation, Lyme disease never did, which could be because Lyme effects whole, like your whole body, and no definitive symptom of Lyme. And so also, countless healthcare dollars were spent which could have been prevented with early and accurate Lyme testing. Late-stage Lyme has also resulted in increased social assistance costs and reduced economic output. And so, yeah, it took me eight years to get diagnosed.

I got Lyme when I was in the military. I served three years until my symptoms were too hard or too overwhelming for me, which was a lot of physical symptoms at that time, and since all my work was physical I wasn't able to keep up with it. But then, I went to university a couple years later and my neurological symptoms were fine and I was on honour roll for two years and I brought my transcript, not to show off, just to kind of show what I was like before Lyme. So, I mean, no one can see it, but anyways, I guess I can just show it and if people want to zoom in or whatever. I guess the big thing was like, I was really resilient, like a lot of people, before Lyme. And then now, I have small threshold.

And I did start treatment in May, 2015, and it's been proven helpful. But it's out of pocket which has been a barrier to treatment. And the funds that I had, which was from my inheritance from my dad, is all gone. And I mean, lots of other people, like, you don't just have money, you know, for just hanging around. And if I can get treatment and get cured, because my treatment now has stopped, but if I can treatment, I plan to finish my-I did two years of university, statistics and actuarial math, so that's-I hope to finish my degree and then help in Lyme because I think that's most important to me. And I've like, I'm over so that's-I'm sorry.

But I'm going to continue. With a patient with Lyme, like, I still have Lyme and I'm so far from being cured but I like to help out in any way. And I have knowledge of a large amount of inefficiencies in healthcare system right now that I've noticed from my experience both in general and in Lyme. Like things that I think can help.

Anyways, other things that I wrote down. More testing, like for Lyme, and more education for doctors about Lyme can save hundreds of thousands of healthcare dollars for a patient over their lifetime. Like I've-so many specialists, all these people I've seen, and other testing that you know, testing and medication for other things when the result, when Lyme is the cause.

Continued learning modules for Lyme, particularly for older doctors. Teaching, helping teach or clarify with doctors the symptomatology of Lyme. From, like patients, to help with diagnosis. Like, before adequate testing, because obviously we don't have adequate testing. So, help until then.

Lise: [2:11:42]

One last point.

Richard: [2:11:44]

And then I'm going to be really quick.

Lise: [2:11:46]


Richard: [2:11:46]

Do you want me to just say it really, really quick? Or just…

Others: [2:11:51]

Say it.

Richard [2:11:52]

Okay. So, acute but not chronic Lyme understood well in Canada. I posit that to research into best chronic treatment patients right now have their treatment covered. Will be around $100,000 each which is a splash in the bucket for what these people will earn for the economy, save for social services and healthcare costs over lifetime. Without treatment, these people are subject to a lifetime of disability to varying degrees. Many, like me, who have been quite successful before Lyme and with treatment, can return to quite productive members of society, even more than regular-or, even more than most I think, because Lyme is often contracted by the adventurous types.

And then I also wrote-I wrote some other things. I'll just say it quick even if maybe it's nothing, but you're-so this is I guess to the government? Your 100K investment in each person will be returned ten-fold just in healthcare cost reduction and economic output alone, and although your investment could cost millions, it'll also provide the groundwork for finding the most effective treatment for chronic Lyme disease. In events like my case, where no testing was done early, I posit the 100K treatment funding would be available now to patients and you can decide, or the government can decide, on who they are and who can aid Lyme disease situation in Canada the most. And it could be available as a-well, anyways, that's about it. I don't know!

Lise: [2:13:45]

Thank you. Thank you very much. That was the end of my list. Did I miss anybody? Did anybody register as a speaker and I did not call on you? Okay. Then thank you to all of you. I am touched and humbled by everything I heard tonight and I really look forward to working with you again tomorrow and Tuesday. Have a very good night. We'll see you back here and we start at nine. Registration is open as of eight.

Good night everyone.

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