In the meantime, can Lyme sufferers afford to wait? “The reality is that while they work to come up with a better test, there is a ton of collateral damage,” says Wilson. “The evidence is there already, if they look.”
Cathy Kirkland wasn’t diagnosed with Lyme disease until she’d been sick for 2½ years. She’d pleaded with doctors to test for it, but no one felt it was merited. Needing a clinical diagnosis, her family decided to seek out the help of a Lyme-literate doctor (LLMD)-a physician who believes in the prevalence of Lyme disease and the need for treatment with powerful drugs over the course of several months or years.
Kirkland’s family contacted Dr. Ernie Murakami, one of the most well-known and controversial LLMDs in Canada. He diagnosed her with chronic Lyme disease-a term used by LLMDs to denote a persistent Borrelia burgdorferi infection-even though the test the family had paid GeneX $800 for had come back indeterminate.
“I do remember questioning whether this was an American corporation looking to make money from their patients,” says Kirkland of the test. “I began to realize health care is an industry like any other. It made me less receptive.” Still, she was willing to try anything that would make her well, and so in July 2006 she began Murakami’s recommended treatment of long-term antibiotics.
Not every Canadian patient is able to find a physician as sympathetic as Murakami. Shannon Goertzen, 38, of Richmond, B.C., has been fighting Canadian doctors for the past four years to get long-term antibiotic treatment for the chronic Lyme disease she says she and her two sons, Taylor, 18, and Parker, 11, suffer from.
They’ve been diagnosed by Dr. Steven Harris, an LLMD in Redwood City, Calif., who has treated over 3,000 patients for the disease. Despite Harris’s diagnosis, Goertzen says physicians at the B.C. hospital where she and her sons are being treated have been very reluctant to treat her younger son, who now uses a wheelchair. “I’ve heard doctors say to Parker flat out, ‘Lyme is a serious disease, you have a life-threatening infection, but I’m not willing to risk my licence to treat you,'” says Goertzen.
And while Parker’s pediatrician and neurologist acknowledge his improvement on the oral antibiotics he’s been taking, Goertzen says, they refuse to continue to prescribe them, despite Harris’s recommendations. At Goertzen’s request, Parker’s pediatrician asked eight other doctors if they would write the prescription, but all declined. After much searching, Goertzen has finally located a Canadian doctor who is willing to follow Harris’s recommendations for her personal prescriptions, but only if she promises to conceal his identity.
Doctors publicly treating Lyme disease with long-term antibiotics have good reason to fear for their licences. Murakami retired in 2008 after the College of Physicians and Surgeons of British Columbia repeatedly challenged his diagnosis and treatment methods of the disease. Two years later, Dr. Jozef Krop, an LLMD in Ontario, also chose to retire instead of continuing to deal with what he describes as persistent hassling from the College of Physicians and Surgeons of Ontario over his treatment methods of Lyme and other controversial diseases.
Those doing the reporting and investigating of LLMDs cite concerns about the misuse of antibiotics, and point to the complete absence of peer-reviewed literature that proves long-term antibiotic treatment for Lyme disease works. And the risks associated with antibiotic overuse are well-documented: It can lead to serious and possibly fatal blood infections, adverse drug reactions and the creation of antibiotic-resistant bacteria (superbugs) that could seriously harm the general population.
But, for the small number of LLMDs operating in North America, the perceived benefits of long-term treatment outweigh the risks. “Once you know what’s going on, it’s hard to ignore it,” says Dr. Maureen McShane.
An American LLMD, McShane practises in Plattsburgh, N.Y., where she is licensed, but she lives in Montreal. After becoming infected with Lyme disease in 2002, McShane personally witnessed the inability of doctors in Canada and the United States to recognize and treat the condition. Though her practice is south of the border, roughly 80 percent of her patients are Canadian.
“By the time they come to me, they’re about 100 percent sure they’ve got it, and when I listen to their stories, I know they have it,” says McShane, who bases her patients’ diagnoses primarily on clinical symptoms. She says many of her patients have visited dozens of doctors before seeking her out.
Jennifer Sierzant, 44, of LaSalle, Que., is one of McShane’s Canadian patients. “Do I have Lyme? She diagnosed me with it,” says Sierzant of McShane’s verdict. “I had to go with that because I was sick and I had to try something. But I always wanted to see something for Lyme like a pregnancy test: You’re either pregnant or you’re not.”
Sierzant has her doubts about the disease’s prevalence. “I think a lot of people probably don’t have Lyme disease and are being told they do,” she says. “They say they have it because they don’t want to accept another diagnosis.”
Cathy Kirkland also grew to have doubts about the disease and its treatment methods. In the summer and fall of 2006 she took several different antibiotics prescribed by Murakami and experienced immense improvement. “It was as if I’d missed out on three years of my life and finally had it back. It was amazing.”
Thanks to her turnaround, she was able to begin her bachelor’s degree in environmental science at the University of Lethbridge. By that time she had researched the mechanisms of the drugs she was taking and began to question their value. “I realized long-term antibiotics could do more bad than good,” says Kirkland. With the help of a naturopathic doctor, Kirkland weaned herself off the medication without the disease returning. Today, she works as a municipal planning intern in Alberta’s Wetaskiwin County.
Reflecting on her experience, Kirkland sees the Lyme disease debate in Canada as a double-edged sword: “On the one hand, we’ve put a lot of trust in our doctors. We need to question what we’re being told and take responsibility for our own health. On the other hand, doctors should be trusted-they’ve studied the body more than anyone. But everyone is human, everyone makes mistakes.”
“Ultimately, I don’t know if I ever had the disease,” says Kirkland. “Dr. Murakami said I did.”
One thing seems clear: There is a dire need in Canada for more research into the illness. At the moment, only $820,000 over five years has been specifically allotted to the disease by the federal government-to study the tick. Until we know more about Lyme, patients such as Kirkland will remain in the dark about the nature of their illness.
This article was originally titled “Under the Skin,” in the June 2011 issue of Reader’s Digest. Subscribe today and never miss an issue!