On the wall of the basement suite hangs a pencil drawing of a little girl. Her long hair is parted down the middle and braided in a neat plait. Her cheeks have a youthful plumpness and her eyes sparkle with adventure.
An artist in Stanley Park drew the picture. It's of a very different Suzy Carter when she was eight years old. Today, sitting on a sofa beside her mother Lida, Suzy can barely keep her eyes open. Her bird-like frame looks fragile and her lust for life has long been stolen from her.
The transformation started 21 years ago, when Suzy was nine. The once-vibrant Squamish youngster, who loved to play piano and excelled in school, began getting stomach pains, headaches and battled an incessant fever. Desperate for answers, Lida dragged her from doctor to doctor. None had solutions.
Suzy's symptoms worsened. The headaches become more severe, confusion and fatigue kicked in and Suzy felt pain in her muscles, joints and eventually, her eyes. By Grade 6, Suzy couldn't make it through a full school day.
“It was frustrating,” Lida recalls.
With options dwindling, Lida turned to her home country of the Czech Republic. There, at 13, Suzy was diagnosed with third-stage neurological Lyme disease.
Triggered by a bite from a bacteria-infected tick, 70 to 80 per cent of people suffering from Lyme disease show early signs of the disease with a bull's-eye rash, states the Public Health Agency of Canada's website. If untreated with antibiotics, the second stage of the disease, known as disseminated Lyme disease, can last several months. It includes central and peripheral nervous system disorders, heart palpitations, extreme fatigue and arthritis.
The third stage, the stage Suzy is at, includes recurring arthritis and neurological problems. Suzy was immediately placed on intravenous antibiotics, only to experience a herxheimer reaction — when the breakdown of Lyme-related bacteria occurs at such a pace that the body can't remove the subsequent toxins fast enough. The pair were told to seek further treatment in Canada, but once home, Suzy's diagnosis was repeatedly dismissed.
Diagnosis and treatment of the disease has a rocky history in Canada and still divides the medical community today. One of the pivotal players in its unfolding path was Squamish Dr. LaVerne Kindree. Between 1989 and 1994, the Valleycliffe resident conducted a study to prove the existence of Lyme disease in B.C. Through random testing of ticks across the province, Kindree found live spirochetes of Borrelia burgdorferi — the agent of Lyme disease.
Armed with the research, he demonstrated there were more than 20 sites in B.C., including Squamish, which harboured Lyme disease. Kindree's work helped prompt the B.C. government to admit the tick- and field mouse-borne disease was endemic to the province. In 1994, the disease became a reportable illness in Canada.
Since Kindree's death three years ago, Dr. Ernie Murakami has picked up on his work. The Hope practitioner became interested in Lyme disease around the same time as Kindree. Murakami has travelled internationally, explaining his methods of tick removal and antibiotic treatment research for chronic Lyme disease patients.
Murakami's interest in the field brought on an unwelcome early retirement, as the College of Physicians and Surgeons of B.C. dubbed Murakami a “zealot” and encouraged him to hang up his hat, Murakami says. But he's determined to make doctors re-examine Lyme disease testing.
With multiple symptoms, Lyme mimics every disease in the book because it attacks organs indiscriminately, he says, noting some doctors believe third-stage Lyme is a go-to cloak for people suffering from neurological disorders.
Although the disease can be clinically diagnosed, meaning a physician doesn't need the backing of positive test results, the number of reported cases in Canada is much lower than our neighbours to the south, Murakami says. That's linked to two factors — doctors' acceptance of the disease and Canada's method of testing for it, he says. In Canada, the health system uses the enzyme-linked immunosorbent assay (ELISA) test, which identifies Lyme disease antibodies. The test notoriously comes back negative, Murakami says.
“It is criminal how we interpret the lab results in these cases,” he says, noting the screening is more stringent in the United States.
The figure discrepancy was highlighted in 2008, says Murakami, when the Public Health Agency of Canada reported there were approximately two cases of Lyme disease per million residents across the nation, while south of the 49th parallel, 70 cases per million were reported. Murakami said he believes doctors are misdiagnosing Lyme disease as multiple sclerosis — an inflammatory disease for which Canada has some of the highest rates in the world.
Lyme disease is chronically under-reported, Jim Wilson, president of the Canadian Lyme Disease Foundation, agrees.
A survey of practicing physicians in B.C., published in the B.C. Medical Journal last year, reported that 148 respondents recalled diagnosing a total of 221 cases of Lyme disease in 2007, yet despite the fact that 58 per cent of family physicians and 66 per cent of specialists knew the disease was reportable to public health authorities, only 13 cases were reported.
Like Suzy's, Wilson's Lyme disease went undiagnosed for several years. It was only after his wife read about it in the library that Wilson felt he'd found an explanation for a biopsy that showed his lymph nodes were fighting an infection of unexplainable origin. He sought out Kindree and after taking antibiotics, his health recovered.
“The medical physicians are taught there really is no chronic Lyme disease,” Wilson says.
Testing for Lyme disease has improved in Canada, says Dave Patrick, the University of British Columbia's director of population and public health. One of the initial problems with testing was early detection, he noted. The tests rely on the body's production of antibodies, which is not immediate after exposure to the disease.
In general, doctors prescribe antibiotics to patients that form a rash from a tick bite, which subsequently means the test for Lyme disease won't be positive.
“By and large, the evidence is early treatment aborts the infection,” Patrick says.
An alternative form of testing is available in the United States. It has a specificity of 95 per cent, he notes. That means out of 100 people tested for Lyme disease, five tests could be falsely positive, contributing to the country's high Lyme disease rates, Patrick says.
“The reason doctors don't recommend the alternative American test is not because they are not concerned about the patients and figuring things out. It's because they don't want somebody to have a wrong diagnosis,” he says.
The Lyme disease bug is not evenly distributed around the continent, Patrick adds. Twenty to 30 per cent of ticks in Connecticut carry the bug, while in B.C. 0.5 per cent of ticks carry the bug — one in 200 ticks.
The advent of the Internet has increased the number of patients inquiring about Lyme disease, Patrick says.
“If I see somebody who thinks they have Lyme disease, they already have got all of their information from these alternative [web]sites,” he says.
Many people with chronic non-specific symptoms, such as fatigue, pains and brain fog, aren't well served by the current medical system, Patrick says, noting the symptoms cam be connected to many different diseases. Without a clear diagnosis, it is difficult to receive treatment and patients hunt for answers.
“There are people who are sick,” he says. “I am just saying we might do more harm than good if we jump to conclusions about what is causing it based on flimsy evidence and lousy tests.”
With guidance from the Provincial Health Services Authority, the provincial government has set aside $2 million to help turn this around. The Ministry of Health is seeking to create a clinic and funnel money into researching regarding debilitating complex chronic diseases, including Lyme disease. An opening date for the clinic, which is slated to run out of the B.C. Women's Hospital and Health Centre, has not been set.
The clinic is slated to function like a centre for excellence, Patrick says, where doctors develop a better standard of care for people with complex chronic symptoms, guidelines that can be disseminated to family doctors and reliable online resources.
“It is an attempt to try and bring compassion and support to a very difficult area,” Patrick says.
For Suzy, she's decided she can't wait any longer. With Dr. Kindree gone, she's aiming to raise money for a controversial and dangerous stem cell treatment. Aspiring to become a teacher, Suzy is determined to get on with her life.
It's difficult, she admits, tapping her foot on a large box of vitamins under the coffee table.
“I feel so lost. I have been getting to the bottom of my strength,” she says.
For more information on Suzy Carter visit www.helpsuzy.com.