The parents of a young woman diagnosed with Lyme disease are speaking out against the B.C. health system because, they said, doctors have failed to properly treat their daughter, causing her to become much sicker than she might have been otherwise.
"Our health-care providers are very biased about this disease. They don't want to acknowledge it," said Jay McQuhae, the woman's father. "You are helpless. Your hands are tied. You can do nothing but just sit there and watch your daughter deteriorate."
Marie McQuhae, 23, believes she may have contracted Lyme disease when she was bitten by a tick while hiking the West Coast Trail a few years ago. She remembers a rash on her lower leg, which she didn't think too much about at the time. Over the last three years, McQuhae said she's had all the classic symptoms listed in the B.C. Health Guide.
"I knew I was sick and I knew something was wrong," said Marie. "I started out with just a few simple symptoms and within a year I was completely bedridden."
Lyme disease is triggered by a bite from a bacteria-infected tick, which can cause a ring of redness and tenderness around the bitten area. In B.C., the common carrier is the Western black-legged tick.
According to the B.C. Centre for Disease Control (BCCDC), Lyme disease is present in several areas, including Vancouver Island, the Lower Mainland, the Sunshine Coast and the Kootenays. Hikers and gardeners can pick up the tick by brushing against vegetation.
The tick introduces bacteria into the bloodstream, which, without antibiotic treatment, can cause a complicated, serious illness. The BCCDC says early symptoms include fever, headache, muscle and joint pain. Untreated, Lyme disease can affect the joints, heart and nervous system, with chronic pain and numerous symptoms that are hard to treat.
Marie McQuhae was unable to sit up to be interviewed. She spoke to CBC News from her bed, where she now spends almost all of her time.
"The head pain is really bad. In every single part of me, something is wrong and it's just more and more debilitating as time goes on," she said.
B.C. doctors didn't test for Lyme
Her parents, Jay and Susan McQuhae, are outraged over how she has been treated by the B.C. health-care system. They initially consulted several doctors on Vancouver Island and, they said, almost all of them dismissed their belief that their daughter has Lyme disease. Many even denied Lyme disease exists in B.C, they said.
"It's as if you said, 'I've just been abducted by aliens' or something crazy like that. They look at you with this disturbed look on their face, like you don't know what you are talking about," said Jay.
Medical records show some doctors refused to treat Marie, advising her to get psychiatric help instead.
Since then, she has been assessed at a mental health clinic, which concluded her illness is physical, not mental.
Her parents paid for her to be tested for Lyme disease by a reputable California lab and the result came back positive. Recent tests in B.C. also detected the possibility of Lyme disease and a B.C. doctor who specializes in the disease has confirmed the diagnosis.
The BCCDC puts out regular information to warn residents about Lyme Disease. In a bulletin last year, the agency warned that the symptoms of the disease are often missed by physicians.
Epidemiologist Dr. Bonnie Henry said, "Lyme disease can sometimes be difficult to accurately diagnose, especially in its early phases, something that physicians should be vigilant about."
The government's B.C. Health Guide also warns the ailment is often missed by doctors, early on. "Lyme disease may be hard to diagnose because its symptoms are like those of many other illnesses … flu-like symptoms of Lyme disease can easily be misdiagnosed as another illness, such as chronic fatigue syndrome."
"I've never seen anything like this before," said Susan McQuhae. "You have a recognizable disease that they can do tests for and give treatment for. Yet, you have to basically diagnose Lyme yourself or through someone else — like a hairdresser — that knows somebody who has the same symptoms.
"It is bizarre. Even once you confirm you have it there is nothing offered to you in the way of treatment."
Jay McQuhae says he no longer trusts doctors. "I have lost all my faith in them," he said after watching helplessly as his daughter changed from a healthy college student to a shell of her former self.
"Three years ago she was going to the gym with me, working out. She was running. She was surfing. She was an active young lady, going to college. Now, she's so sick that she can't do anything."
What's most upsetting, he said, is that the difficulties could have been avoided if B.C. doctors had recognized Marie's symptoms early on, before she became much weaker and harder to treat.
"You feel like you are totally alone," said Susan. "Where is the support now for her now? Where is the support for my daughter now that she is so ill?"
On several occasions, her parents have resorted to calling an ambulance to take Marie to emergency, because, they said, it's the only way she can get quick access to pain medication.
Marie McQuhae wiped away tears as she spoke about how her life has fallen apart.
"Its so hopeless, like nobody can help," she cried. "You become not part of society or the human race anymore."
Hundreds suffering, says group
Jim Wilson, the president of the Canadian Lyme Disease Foundation, estimates hundreds of people in B.C. are suffering like Marie, in silence and seclusion.
"Some have had a diagnosis of MS [Multiple sclerosis], arthritis of various forms, fibromyalgia, chronic fatigue syndrome, Crohn's disease, irritable bowel syndrome, psychiatric disorders such as bipolar disorder, or a host of other diagnoses that simply describe a set of symptoms, not the disease process," said Wilson.
The BCCDC records three to six new Lyme infections in the province per year, but those are only the confirmed cases officially reported by doctors. Based on U.S. research, Wilson estimates B.C. has 10 times that many new cases annually, but, he said, the vast majority of sufferers are never referred for testing, because they are not diagnosed by doctors.
In addition, Wilson believes the tests for Lyme disease done in B.C. labs is substandard.
"When a person contacts us, we advise they have a whole series of tests done, not simply the poor screening test [used by the B.C. labs]. U.S. labs are proficiency tested by U.S. regulators to keep their certification and they have the highest accuracy results in North America."
To complicate matters, the U.S. Centers for Disease Control and Prevention in Atlanta has warned that initial tests can be false negative, in the early stages of the disease. An initial test for done on Marie McQuhae in B.C. came back negative.
"When a person tests positive in the U.S. after they have tested negative in B.C. they have an almost impossible time getting treatment because doctors in B.C. are told the U.S. tests are not to be trusted," said Wilson.
"This is absurd. When one of the owners of the U.S. labs noticed so many Canadians testing positive, he came to B.C. at his cost to talk to doctors [in Victoria]. Not one doctor attended his talk."
The McQuhae family is now spending thousands of dollars on treatments offered by private clinics. So far, they've seen no improvement in Marie's condition.
McQuhae said the Campbell government should initiate an awareness campaign, as it did with West Nile virus, to bring the B.C. health system up to date on Lyme disease.
CBC News asked to speak to B.C. Health Minister George Abbott about this, but he refused.