Thank you so much.
My name is Nicole Bottles, and I'm here with my mother and caregiver Chris Powell. l'm 21 years old and live in Victoria, B.C.
I'd like to give you a glimpse into my personal battle with Lyme disease, and also remind you that I am not alone in my struggles. My story mirrors that of so many Canadians whose progression of illness follows a similar path: a mysterious illness; multiple specialist visits; negative lab work; which culminates—possibly years later—with misdiagnosis or no answers at all. The tragedy is that the longer you leave this infection unchecked, the more dire the consequences.
I was 15 and halfway through my grade 10 year, eager to be planning my future. All that changed when, several months into a prolonged illness, I realized one day that I couldn't get out of bed, not even to attend a few hours of school. It was one of the hardest decisions I've had to make.
My symptoms began in 2006 with migraines, breathing problems, and fatigue, and gradually expanded in 2007 to migrating joint pain, dizziness, nausea, weakness, and memory and concentration issues. As my mysterious illness progressed in early 2008, I developed intense pain, swollen joints, exhaustion, severe short-term memory, and cognitive impairment. Within a few months, I was no longer able to walk, remember new things, go to school, or live in a way that could be conceived as tolerable or acceptable.
The culprit, we would later discover, was a tick the size of a poppy seed. We visited many specialists, none of whom could figure out why I went from being a healthy, active teenager to a girl barely able to walk or function.
The months that passed between the initial onset of my illness, the specialists' circuit, and my eventual American diagnosis wasted precious time and resulted in my becoming much, much sicker. At this point, I will most likely suffer permanent damage from the infection.
While doing research, my mom learned about a complex bacterial infection that could wreak havoc with every organ and body system and cause severe neurological problems. All my seemingly unconnected symptoms matched a classic manifestation of this infectious disease, which I had yet to be tested for.
I was so relieved we were on the right track, and I assumed that with a few months of antibiotics I'd be fine. We didn't know about the controversy, but we learned quickly when we brought a checklist of Lyme disease symptoms to my specialist appointments. I had three-quarters of the symptoms at that point.
We weren't prepared for the unusual response that inquiries into Lyme disease elicited. “Lyme disease is very rare” we were told by every specialist as they completely disregarded our concerns. I needed to “start living” with my disability, and essentially get on with my life, which at age 15 was unacceptable.
After months of repeatedly requesting to be tested, I was finally given the ELISA test. Like so many other Canadians, I had a negative test result, which doctors incorrectly assumed rules out Lyme disease, despite my classic clinical symptoms. We weren't aware of the 2005 NIH study at Johns Hopkins University, which showed that the test is less accurate than a coin toss. More sensitive serological testing available from U.S. laboratories like IGeneX later revealed that in fact I did have Lyme disease.
With no diagnosis in Canada, and my health rapidly deteriorating, my family made the difficult decision to seek the help of Lyme-literate experts in the United States, as thousands of other Canadians do. We lived in Connecticut for 10 months of intensive treatment. It was a choice that saved my life and started me back on the road to health.
Four leading experts clinically diagnosed me with Lyme disease and two co-infections. Almost six years of antibiotic and natural therapy are slowly helping me to regain my well-being. I no longer experience seizures and blackouts, and my pain, overall cognitive ability, and abdominal issues have improved.
In spite of my illness, I graduated from high school in 2010. I love teaching knitting classes at my local library; I practice yoga, I sing in two choirs, and I try to “fill the unforgiving minute with sixty seconds' worth of distance run”, as Rudyard Kipling wrote. l've come a long way but realize that I still have a long journey ahead of me.
Over the course of the past five years, l've seen three infectious disease doctors in Victoria. Each stated categorically that I do not have Lyme disease, based solely on the flawed negative ELISA test. They did not take into consideration the 85 years of collective experience from the four U.S. physicians I've seen, who've treated thousands of patients with Lyme disease. One of the ID doctors admitted they had never seen a case of Lyme disease in their 10 years of practice.
The Canadian Adverse Reaction Newsletter in October of 2012 stated that: “Serological test results are supplemental to the clinical diagnosis of Lyme disease and should not be the primary basis for making diagnostic or treatment decisions.” Additionally, the article stated emphatically that Lyme disease test kits are not designed to screen patients or to establish a clinical diagnosis.
Another example of the need for doctor education can be seen in the results of Dr. Bonnie Henry et al from the BCCDC survey of over 1,600 doctors in British Columbia: 63% of the physicians did not know that the “bull's-eye rash” was diagnostic of Lyme disease. The gulf between the medical literature and patients' experiences in their doctors' offices has a far-reaching impact.
The most heartbreaking part of our collective story is the unnecessary suffering. Lyme disease is easily cured in its early stages with $100 worth of antibiotics. Instead, like so many Canadians, l've spent the past six years battling this illness and the medical establishment, while my family has accumulated well over $100,000 in medical bills not covered. Our family home was sold, bank accounts and life savings drained. My father is 67 and is unable to retire due to the financial burden.
A 2006 study from the CDC found that the annual burden of disease, the BOD, when Lyme was treated early in the course of infection, was under $1,500 for only one year. If the illness was left untreated, developing into a chronic infection like I have, the burden of disease jumped to $16,000 per year, every year. The cost of being misdiagnosed is astronomical for our health care system. The cost to patients could be their lives.
There are two standards of care for the treatment of Lyme disease. Patients are abandoned in our current system, because Canada follows the IDSA guidelines that limit our ability to access care beyond 30 days, as stated in the treatment guidelines. The polarity between the IDSA and the International Lyme and Associated Diseases Society, that advocates patients be treated until their symptoms resolve, suggest that the two standards of care need to be re-evaluated.
Lyme disease is a global issue. We need a made-in-Canada framework, such as the regionally specific strategies adopted by Germany and Scotland. The Schmidt report, commissioned by the B.C. PHSA in 2011, investigated the challenges faced by Canadian Lyme patients and outlined a bold action plan. Tragically, none of the eight recommendations have been implemented, but could serve as a blueprint for the constructive change the national framework envisions.
After decades of denial and suffering, and a crippling deficit of knowledge, our country's ability and willingness to fight the Lyme epidemic is at a turning point. Ahead, the changing climate and human encroachment on wildlife habitat will lead to an explosion in tick population. The national Lyme disease strategy, if successfully executed, will set about reconciling the two standards of care into a workable set of guidelines, transforming a toxic situation into a constructive environment for patient care.
When I first became ill, I made a promise to myself that I would do everything in my power to ensure that others would not have to endure life in Canada as a Lyme-leper . l'm asking you to do the same.
Thank you so much.