Westbank resident Jim Wilson hasn’t forgotten the misery of driving across Canada with Lyme disease in 1991. It was two months after a tick bite had left a telltale sign of Lyme disease: a bull’s-eye rash. At the time, Wilson didn’t know anything about the disease, which is named after the town of Old Lyme, Connecticut, where an outbreak occurred in the 1970s. The debilitating bacterial disease causes flulike symptoms, rashes, loss of energy, swelling and pain in the joints, tingling and numbness, memory loss, and, on occasion, facial paralysis.

In a recent phone interview with the Georgia Straight, Wilson recalled that his rash disappeared after three weeks. But during his cross-country trip, he felt tingling and numbness in his legs. He also felt incredible fatigue. “Finally, I had to stop driving every two to four hours for a nap,” Wilson said.

Over the next three years, his condition deteriorated. A biopsy concluded that his lymph nodes were fighting an infection of unknown origin. It was only after his wife started studying diseases in the library that they learned about Lyme disease.

Fortunately, he found a doctor in Squamish, L. C. Kindree (now retired), who treated patients with the disease. Wilson said that after eight years of taking antibiotics, he recovered his health.

Now, as president of the Canadian Lyme Disease Foundation, Wilson is battling the medical establishment over the diagnosis and treatment of the disease. He told the Straight he believes that Lyme disease is vastly underreported in B.C. and the rest of the country; it’s a position that has been rejected by the B.C. Centre for Disease Control.

Perry Kendall, the provincial health officer, told the Straight in a phone interview that he has been trying to work with BCCDC officials and Wilson to resolve this dispute. However, Kendall acknowledged that a solution is “not immediately obvious to me”.

Antibody tests called ELISA and EIA are used to diagnose the disease, which is caused by a spirochete called Borrelia burgdorferi. “The ELISA or EIA tests have been shown in every major body of research not to be sensitive enough for an appropriate screening test,” Wilson claimed. “There are a whole lot of reasons why people don’t mount an antibody response. It may be genetic. It may be that the test was done too early or too late.”

Wilson said that there were only 50 “confirmed” cases of Lyme disease in Canada in 2006, compared with “between 100,000 and 200,000” in the United States in the same year. (The Atlanta-based Centers for Disease Control and Prevention cited 19,931 reported cases and has estimated in past years that some areas in the U.S. may have been underreporting by as much as six- to 12-fold.) However, Wilson said that his foundation has helped confirm another 2,000 Canadian cases by encouraging people to send blood samples to U.S. labs that specialize in tick-borne diseases.

Wilson also thinks that the way Lyme disease is usually treated—with a three- or four-week regimen of antibiotics—is insufficient to kill all spirochetes in all cases. He said the bacterium is a highly evolved organism. “It can change its outer cell walls,” he said. “It can change its outer-surface protein.”

Kendall said that the controversy is over whether “standard laboratory tests that are internationally recognized by infectious-disease laboratory associations are underdiagnosing” or if the other laboratories are overdiagnosing. “We have a screening test, which has a high sensitivity, that pulls up lots of potential cases,” he said. “Then you try to confirm it.”

He added that the prevalence of Lyme disease is much greater in Eastern Canada and the eastern United States because a different bacteria-carrying tick species is found there.

Bonnie Henry, a BCCDC physician-epidemiologist, told the Straight in a phone interview that she and other researchers have tested more than 10,000 ticks on mice in this province. She said that less than one percent of these disease-carrying Ixodes pacificus ticks were infected with the bacterium.

“Even if you are bitten by a tick, your risk of Lyme disease is still low,” Henry said.

In a new book, Cure Unknown: Inside the Lyme Epidemic (St. Martin’s Press, $28.95), medical journalist Pamela Weintraub quotes Willy Burgdorfer, who discovered the bacterium that causes Lyme disease. Burgdorfer claimed that “powerful evidence” suggests spirochetes assume “sporelike forms” after being treated with antibiotics, and then these spores can convert back to their original form. Weintraub claimed that this is why an infection treated with an antibiotic may survive.

Earlier this year, Stephen Barthold, a researcher at the University of California at Davis, published a study in Antimicrobial Agents and Chemotherapy that showed spirochetes in two mice survived after treatment, according to Weintraub. The BCCDC’s Henry, however, said that this study hasn’t been reproduced, and she’s not convinced of the existence of “chronic Lyme disease in the absence of having early Lyme disease in tick bites”.

“There is great concern that the initial study that was published was quite flawed,” Henry said.

As Weintraub’s just-released book gains a wider audience, it’s sure to provoke more debate. “I think it’s excellent,” Wilson said. “I think she has done a real good service to the Lyme community because she sort of laid out everything as it should be.”

Next Friday (July 4), people with Lyme disease will hold rallies across Canada to draw attention to the diagnosis and treatment of their condition. In Vancouver, the protest will take place at 9:15 a.m. outside the office of the British Columbia College of Physicians and Surgeons at 858 Beatty Street.

There will be three minutes of silence for the victims of Lyme disease, followed by a statement to the people present as well as to any media that attend.