Karen Marchand (left) and friend Linda Steele hope that sharing their stories will help others with Lyme.

Karen Marchand (left) and friend Linda Steele hope that sharing their stories will help others with Lyme.

Reliving their pain to shed light on Lyme

Two women share their personal struggles with the debilitating disease

Walking through Karen Marchand’s South Surrey home, it’s apparent that every inch of the condo has been meticulously laid out and designed with an expert eye.

The walls are covered in textured wallpaper, a pop of colour is strategically placed here, an eye-catching light fixture there.

She points to art that hangs near the entrance.

“That’s what I used to paint,” she says. “I can’t do that anymore.”

For nearly three years, the commercial interior designer has had the brakes put on her life – including leaving her passion and the industry she had worked in for 24 years – to cope with Lyme disease. Every month, instead of looking to a new space to transform, Marchand, 54, has been pouring thousands of dollars into her treatment.

“I would prepare all the construction drawings and the design concepts for stores, restaurants, food courts, chain stores. And I just lost the ability to do any of it,” she says, tearing up.

“Because all my cognitive skills were affected. I couldn’t remember anything and I couldn’t focus. I couldn’t have conversations that were in-depth about anything, and I still can’t.”

Sitting next to Marchand is friend and fellow Lyme disease sufferer Linda Steele, who notes that remembering all that has been lost can sometimes be the most painful part of the disease.

“Talking about it is hard,” Steele, 66, says. “It’s reliving it.”

The two women met about 18 months ago through a Lyme disease support group and became fast friends. After reading in the Peace Arch News in August about Louise Roderick’s experience dealing with Lyme disease, they decided to go public with their stories.

For Steele, she noticed in the summer of 2002 that she was having difficulty walking. Soon, she experienced swelling in her knees.

“When I would go for long walks, it felt like I was dragging cement. And the leg that was swelling would collapse,” she explains.

The Cloverdale woman’s condition slowly progressed and she was diagnosed with central nervous system disorder by her neurologist. Nine years later, under the advisement of her family doctor, she switched to a neurologist at St. Paul’s Hospital, who ordered a Lyme-disease test.

She tested positive on the ‘enzyme-linked immunosorbent assay’ (ELISA) test and negative on the ‘western blot’ test. Her family doctor asked for another test. Again, the ELISA was positive. Her third test, on the request of an infectious-disease doctor, was positive, as well.

The results surprised Steele, as she had been told by one doctor that there is no Lyme disease in Canada.

“I just let it go. I never thought to fight it, to say I wanted (the test),” she says. “So if I had been treated back then, I probably would have been rid of it by now. Who knows?”

Despite the three positives, her doctors were still not convinced Steele had Lyme disease, so she struck out on her own to find out more.

Eventually, in 2011, she came across the CanLyme website, reaching out to founder and fellow Lyme disease sufferer, Jim Wilson, who directed her to Dr. Ernie Murakami, founder of the Hope-based Murakami Centre for Lyme.

According to Steele, the longtime physician was forced out of the medical community as a result of treating Lyme disease sufferers.

“He is a retired doctor who was pressured out of practice because he was treating Lyme disease with long-term antibiotics and having success with it,” Steele explains. “He said that if you have three positives, you have Lyme. Even though it’s not a reliable test, to have three… You don’t just get three positives.”

Murakami directed Steele to a U.S.-based lab – IGeneX – which confirmed she had Lyme disease.

A doctor’s battle

According to Murakami, after the BC College of Physicians was made aware he was treating Lyme disease with long-term antibiotic treatment, a chain of events forced him to retire in 2008 at age 77 (“I was still sharp; I had no complaints”).

“Finally, they sent two people to my office and handed out pamphlets to my patients saying they were from the college and they were investigating… It was very embarrassing,” Murakami told PAN.

“Of course, doctors are afraid to treat Lyme disease because the college frowns upon it and will harass them. Why harass them? Why not sit down and discuss it?”

In an email to PAN, Susan Prins, director of communications for the College of Physicians and Surgeons wrote: “Dr. Murakami is no longer a registrant of the College. I am not sure what he is doing now, but he does not hold a licence to practise medicine in B.C.” She did not comment on Murakami’s claims.

Once retired, Murakami founded the Centre for Lyme, offering support, resources and guidance for those afflicted with Lyme, as well as working to educate physicians.

According to Murakami, the cause for the low numbers of Lyme disease in Canada is a result of misdiagnosis.

“All of the sudden, the rate of Lyme disease drops down to 0.1 per cent (in Canada), and the multiple sclerosis is one of the highest rates in the whole world. How can you explain that? We are making a mistake in the diagnosis. We, as doctors, are calling all our Lyme cases as MS,” he said.

A Provincial Health Services Authority internal review in 2010 of chronic Lyme disease in B.C. stated that “the current state of diagnostic method for chronic Lyme and other related infections is inadequate.”

The review made eight recommendations, including that a doctor should not be investigated for practising “complementary medicine” or for using non-traditional therapies to treat Lyme. It called for more studies on Lyme disease in B.C. and more efforts to improve diagnosis and treatment.

“We still have doctors saying that we don’t have Lyme disease in Canada,” Murakami said. “That’s a criminal statement.

“The sooner we discuss it, the better off we are. Unfortunately, infectious-disease doctors vehemently deny there is a disease here.”

A newer problem

According to B.C. Centre for Disease Control medical director Dr. Bonnie Henry, doctors who claim there is no Lyme disease in Canada are incorrect.

For nearly 20 years, the BCCDC has been saying that Lyme disease is a communicable disease in Canada, and have been monitoring both ticks and the human illness.

Henry said not only is there Lyme in the country, there are two different types. Studies show ticks carrying the disease are on the rise, particularly in eastern Canada.

“Because of climate change and global warming, we’re seeing the moving of tick populations to more populated areas,” Henry said. “But it’s a little different here in British Columbia, because we have a different species of tick that carry Lyme disease, and not a lot of the ticks here carry it. Specifically, there is less than one per cent of ticks that carry (Lyme disease) here.”

She compared that percentage to eastern provinces and eastern United States, where more than half the ticks can carry the disease.

Despite the efforts of the BCCDC to make this information public, Henry conceded there are still doctors who may not be aware of the changes regarding Lyme disease.

“We try to get the message out, but the reality is that when some physicians started their practice, we probably didn’t have Lyme disease. I mean it was only recognized in the ’80s. And so some people are not aware of the changing risks,” she said.

However, Henry – who was one of the leads in the response for the SARS outbreak in Toronto in 2003 – noted the majority of B.C. physicians are well aware of diagnosing and treating Lyme disease, especially when it’s in the early stages.

She explained the two-step process that looks for antibodies begins with the more-sensitive ELISA test – which picks up any antibodies that look similar to antibodies to borrelia, a bacteria that causes Lyme disease. Following a positive on the ELISA test, the more-specific ‘western blot’ test narrows down to the antibodies that are most like borrelia.

“Someone can have a positive (ELISA) that is a ‘false positive’ that is not confirmed by the western blot test,” Henry said. “This would mean that they have antibodies in their blood that look a bit like ones for borrelia, but are different and may be related to exposures to other things unrelated to Lyme disease.”

She said a person with multiple positives on ELISA but a negative on ‘western blot’ would not be diagnosed with Lyme disease.

‘No conspiracy’

While Henry said there is a common belief among some support groups that the public health system is working to cover up cases of Lyme disease, she said there is no basis for that.

“I have no ulterior motive in this at all, I don’t make money depending on how much Lyme disease there is or isn’t in this province, and so I think this whole conspiracy and blaming the public health system for this conspiracy is really misplaced,” she said.

While there are legitimate cases of Lyme disease in Canada, Henry noted there can be a host of other possibilities behind the symptoms, including chronic fatigue syndrome.

“People who sometimes want a miracle cure get frustrated when some of the physicians and the medical system talk about things like sleep. Let’s talk about maximizing your sleep, let’s talk about managing your pain properly and making sure you eat a healthy diet, and we can maximize your immune system so you can feel better,” she said.

“I get very frustrated with (talks of coverups), I have to admit, because it’s tough. I have no reason at all to cover this up, I want to know as much as anybody why people are suffering like this and if there is anything we can do to help. I firmly, firmly believe that all of these other insular things, like monitoring sleep, help you cope and help people manage who are truly suffering.”

And for people like Steele and Marchand, who are using antibiotics to manage their ailments, Henry warned while it may be effective initially, the long-term effects could be harmful to their health.

“There is a group of people who have problems that are very real, and it’s unclear what is the cause of those problems. And treatment can be very complex and difficult,” Henry said. “I think we still have a lot to learn.

“I’m also very wary that there are people – particularly a number of laboratories in the U.S. and clinicians in the U.S. – who are making money off this. And that worries me.”

Despite the contention surrounding Lyme disease diagnosis and treatment, Steele and Marchand are determined to reach out to as many people as possible, and will be hosting Murakami at a free event on Lyme disease at Cascade Community Church, 35190 Delair Rd., Abbotsford, at 7 p.m. on Nov. 14.

“We want to bring awareness to Lyme disease to prevent others from getting it,” Steele says. “We don’t want others to go through what we’ve gone through.”

To contact Steele or Marchand, email vancouverlymeawareness@hotmail.com