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Long road leads to Lyme for Ladner woman

Elaine Crossley finally gets proper diagnosis, but the battle is far from over
Elaine Crossley first showed symptoms of Lyme disease in 2009, but wasn’t properly diagnosed until last year. Joined by husband Bill Wheeler, now she’s fighting for better testing and treatment.

It seemed innocent enough. In March 2009, Elaine Crossley was working in the yard with her husband Bill Wheeler. Later that day, she noticed a bite on her leg. It didn't hurt and it wasn't itchy. She thought it might be a spider bite because there was a small chunk of skin out of her leg.

Little did she know, it was just the beginning of what would turn into an ongoing battle to maintain her health.

"Within six days of that bite, I was starting to feel pretty sick," she says.

She woke up one morning about a week after noticing the bite with pain in her back and sides.

"By suppertime it was burning to the point that I called the doctor. There were no appointments until the following week so they put me on the cancellation list," Crossley says. "I felt like I'd been run over by a truck almost, you know, but couldn't figure out what was wrong."

The symptoms continued the next day and new ones started emerging.

She developed a bad headache, muscle pain, a fever and cough, she had a tingling sensation in her face, was extremely nauseated and could not stop shivering. It was almost like a really bad case of the flu, she remembers.

"But it was a little more intense and that was what worried me."

She developed abdominal pain and started vomiting. A few days later, concerned that her symptoms seemed to be getting worse, not better, she went to the emergency room at Delta Hospital. After some blood tests, she says, the doctor told her it appeared that she had hepatitis.

"Misdiagnosis number one," says Wheeler.

She says she was sent home and told to drink plenty of fluids and get some rest.

When Crossley finally got to see her family doctor, she was referred to a rheumatologist in Vancouver where the doctor and a medical student "went over her with a fine toothed comb" and told she might have lupus or rheumatoid arthritis.

"But they couldn't really nail it," she says. "They basically said, 'We don't know what's wrong with you.'" By then, the symptoms were starting to subside somewhat. She started to feel better and life went back to normal, for the most part.

"Over the next five years, every month I'd have issues with not being able to walk," she says. "My legs would almost turn to jelly and I'd have a day or two and then it would clear up."

Now 71, Crossley says she wrote most of the symptoms off to old age.

"I just thought, 'Oh well, this is just what happens in your golden years.'" She ignored it until November 2013 when the agonizing pain resurfaced the day after she had her annual flu shot.

"I got really worried," she says. "My bones hurt so much."

After another extensive exam with the rheumatologist, which failed to turn up any conclusive results, she says, it was decided she had psoriatic arthritis.

Crossley ended up with five different prescriptions, one of which was a weekly injection of a chemotherapy drug that was supposed to take several weeks to take effect.

"I waited and waited and nothing happened, except I started to loose my hair," she says. "I got mouth sores from it and was sick for two days (after each injection)."

The drug is shown to have good results for patients with psoriatic arthritis, Crossley notes, but she saw no improvement in her symptoms.

It was around last March that Crossley began to suspect she might have Lyme disease. The couple was getting ready to head to Florida for the month of April and Crossley started researching testing the disease.

"I do know the testing for it is faulty in British Columbia, in Canada really," she says. "It's grossly under reported, grossly under treated, in B.C. especially."

With the trip to Florida already planned, she made an appointment with a Lyme clinic there. There, she says, the doctor took blood and questioned her about her symptoms for 90 minutes. After more tests and two weeks of waiting, the couple had the answer to more than five years of pain and sickness.

"Sure enough, I had Lyme disease," Crossley says. "I was almost thoroughly relieved that I had it because I had an answer to all these problems I was having."

However, finally getting a diagnosis wasn't the end of the couple's problems.

The Canadian Centre for Disease Control (CDC) does not recognize the tests done in the U.S. In Canada, in cases of suspected Lyme disease, patients are subject to an initial test. If that test is positive, a second different test is done, which can confirm the presence of the disease.

The problem, the couple contends, is the first test often results in a false negative and because of that, the second one is never done.

David Cubberley, a B.C. board member with CanLyme, the Canadian Lyme Disease Foundation, says the current Canadian guidelines "rule out prompt diagnosis of Lyme disease and refuse treatment of chronic Lyme."

Officially, Canada saw 682 cases of Lyme disease in 2013. According to the Public Health Agency of Canada website, the numbers for 2014 are still being validated. However, CanLyme gets between 2,000 and 3,000 inquiries a year, says Cubberley.

He says the Public Health Agency of Canada recently testified in the House of Commons that the number of cases of Lyme disease in Canada is expected to rise to around 10,000 by 2020.

"Which clearly indicates that we're under reporting Lyme disease currently because in five years we're not going to go from (where we are now) to 10,000."

After the couple returned from Florida, Crossley went to see the rheumatologist and told the doctor she had been diagnosed with

Lyme disease. She says the doctor told her she didn't need to see her any more.

The couple found a local Lyme disease support group and through the group was fortunate to find one of the top Lyme-literate naturopathic doctors. Because it is a bacterial disease, Lyme is usually treated with an aggressive round of antibiotics.

Last May Crossley was put on a double dose of antibiotics for four months, in addition to herbal antibiotics and probiotics. She started to notice an improvement in her health.

"The pain with Lyme, a lot of the pain, comes at night when you lie down and I was only getting an hour-and-a-half sleep every night and then I'd get up and I'd wander around for an hour and the pain would start to subside somewhat," she says. "I'd go back to bed and get another hour, hour-and-a-half, two hours sleep.

"After the antibiotics, I did notice that I actually got six hours one night, which is unheard of for me."

She is now off the antibiotics and using herbal supplements. She says her pain is down by about 40 per cent and she is regularly getting three to four hours of sleep at a time.

However, it has come at a cost - the couple has spent about $7,500 over nine months to cover the naturopath, blood work, medication and supplements. "None of my supplements are covered by any medical or extended health plan," Crossley says. Crossley and Wheeler have decided to take action in the fight to have improved testing and treatment for Lyme disease in B.C. and Canada.

"Lyme patients in B.C., and Canada for that matter, are discriminated against, denied, often lied to or test results hidden or misdiagnosed," Wheeler says. "There's something going on that mainstream medicine isn't clicking yet."

They attend two Lyme support groups and have volunteered at Lyme education events, they have written letters to the CDC, Fraser Health and other authorities in B.C., with no response.

"It's very, very political. It's sort of where AIDS was 30 years ago," Wheeler says.

"Sooner or later the dam's going to break and it's going to come out that we're not acknowledging and diagnosing this properly."