Living with Lyme disease

From The Record (Waterloo Ontario)

Anjanette McKenzie knows all about it

JOHANNA WEIDNER

ROBERT WILSON, RECORD STAFF Former Kitchener resident Anjanette McKenzie was recently diagnosed with Lyme disease. She moved to St. Thomas to be close to famly because she was so sick she needed help caring for her young children.

An adult female deer tick (left), an adult male and a nymph.

Anjanette McKenzie was so happy to find out she had lyme disease, she threw a party.

After two years of suffering severe and unexplained symptoms, McKenzie finally knew what was wrong with her. Even better, treatment and recovery could begin.

"It just felt like finally we have an answer," she said.

McKenzie and her family moved from Kitchener to St. Thomas a year ago to be closer to relatives to get help caring for the couple's three young children.

Symptoms hit her in waves. The worst was intense joint pain that spread through her body, making walking excruciating at times.

"I felt like I went from being in my 30s to being 90 overnight," she said. "Some days it was really tough to cope."

Possible explanations doctors offered were scary -- multiple sclerosis, lupus.

Her symptoms began in summer 2005.

"I started having numbness and tingling in my left foot," said McKenzie, who is 35.

Her doctor couldn't find a cause, so she coped with the pesky problem.

"It was just a little worrying, but not too much," she said.

Then the following spring, McKenzie said, "all of the symptoms hit me full force."

She experienced painful muscle twitches in her legs, one side of her face went numb, and heart palpitations sent her to the emergency room.

"They couldn't figure out what was wrong," she said. That's when she had a lyme test -- the first of five or six that all came back negative.

The symptoms lasted a few months, then during the summer she felt OK, with only mild problems lingering. But the following winter McKenzie was hit with the arthritic pain that lasted until this spring.

"That was my first really scary symptom," she said.

NO ONE HAD AN ANSWER

Still, doctors couldn't figure out what was wrong. McKenzie went from one specialist to another, then back again. Two neurologists, a rheumatologist, family doctors -- no one had an answer.

"I started feeling broken down. I didn't have the strength to keep pushing."

McKenzie read about Lyme disease in an article this summer and the symptoms sounded just like what she was experiencing. She was convinced it was the cause of her illness, even if her doctors insisted Lyme disease was unlikely, and made an appointment with a Toronto doctor who treats many patients with the disease.

McKenzie asked for a Lyme disease test to be done at a U.S. lab because she heard that they were more sensitive than those done in Canada, and she paid $350 out of pocket for it.

A few weeks later the results came back: "Sure enough, I had Lyme disease," she said. "It was a relief, but I also felt mad because I did all the work to get to that point."

Jim Wilson, president and founder of the Canadian Lyme Disease Foundation, said many people turn to laboratories in the United States after negative Lyme tests in Canada after facing the same struggles as McKenzie.

"You have to fight for your own health care and this is such an unnecessary battle," said Wilson, who was sick with Lyme disease for three years before a diagnosis.

Wilson said the type of testing done in Canada is not sensitive or accurate enough and the foundation has been pushing for new testing standards and more research into Lyme disease.

He believes many cases of Lyme disease in Canada are misdiagnosed, often as multiple sclerosis, Alzheimer's disease, fibromyalgia or chronic fatigue syndrome. And he said a lot of Canadians are suffering needlessly.

"You're more likely to get a wrong diagnosis, not get treated and end up with a much more chronic form of the disease and that can absolutely destroy your life," Wilson said.

HAD TO PUSH FOR DIAGNOSIS

McKenzie is upset it took so long for her to get a diagnosis, and she had to push so hard to get there.

"I just find it frustrating that this could have been completely cured a long time ago," she said.

McKenzie believes she was bitten by a tick infected with Lyme disease in the backyard of her Kitchener home. Long grass grew behind the house, and she hadn't travelled to any areas where Lyme disease is common. She didn't see a tick or rash, but not all people get the circular rash, characteristic of a Lyme disease infection.

Brenda Miller, the region's acting manager of health protection, said it's not likely a person could become infected in Waterloo Region because "the Lyme disease tick is not found in this region typically," Miller said. However, "it is possible."

An infected tick could be transported here, perhaps on a dog that was in an endemic area. In Ontario, ticks carrying Lyme disease are more commonly found along the north shore of Lake Erie, in particular Long Point, Turkey Point and Rondeau Provincial Park.

So far this year, three cases of Lyme disease have been reported in the region. Lyme disease infections are most often reported between August and October.

Public Health investigates all cases to try and determine where the person came in contact with an infected tick. All the cases this year were acquired in endemic areas. That's the same for the five cases reported last year.

McKenzie started antibiotic treatment in early September and will need months of medication, perhaps intravenously if she doesn't respond to oral antibiotics.

"I still feel like I have something wrong with me," she said.

McKenzie is expected to recover, but for now she's still coping with fatigue, joint pain and minor cognitive problems.

"I think we just have to keep waiting for the symptoms to ease up," she said.

"There are chronic cases out there, but I'm hoping I'm not going to be one of them."

jweidner@therecord.com

DEER TICKS CAN SPREAD BACTERIUM IN ONTARIO

Lyme disease is caused by a bacterium that is spread through the bite of certain types of ticks.

The bacterium is normally carried in mice, squirrels, birds and other small mammals.

It's transmitted to ticks when they feed on infected animals and then to humans through bites from infected ticks. In British Columbia, the western black-legged tick transmits Lyme disease.

In Ontario, it's spread by the black-legged tick, often call the deer tick.

Black-legged ticks can be found in all areas of Canada, even where tick populations have not been previously identified.

It's presumed that ticks are introduced to these areas by migratory birds.

It's possible to be bitten by an infected tick anywhere in Canada, although the chances are considered low in areas where populations are not established.

Populations are established in southern B.C., southern and eastern Ontario, southeastern Manitoba and parts of Nova Scotia.

PREVALENCE

Lyme disease is the most common bug-borne illness in North America.

In the United States, about 20,000 new cases are reported every year, according to the Centers for Disease Control and Prevention.

In Canada, Lyme disease is not a nationally reportable disease. It is reported in Ontario, where there are between 15 to 40 cases each year.

It's also reported in parts of Europe and Asia.

SYMPTOMS

Lyme disease symptoms are often described in three stages, although not all patients have symptoms of each stage.

The first sign of infection is often a circular rash that appears a few days to a month after the bite. Other symptoms include fatigue, chills, fever, headache, muscle and joint pain and swollen lymph nodes.

If the infection is untreated, the second stage can last up to several months with symptoms that include central and peripheral nervous system disorders, multiple skin rashes, arthritis and arthritic symptoms, heart palpitations, and extreme fatigue and general weakness.

The third stage can last months to years if the infection is untreated, with possible complications including chronic arthritis and neurological symptoms.

Undiagnosed and untreated Lyme disease may develop into chronic disease that may be difficult to treat.

Treatment requires antibiotics -- the earlier, the better. Early intervention often only requires two to four weeks of treatment. Serious infections or treatment in later stages require a longer course of antibiotics, perhaps intravenously.

PRECAUTIONS

Lyme disease can be acquired from early spring through late fall.

Precautions can reduce the risk of being infected with Lyme disease, including:

Wear protective clothing to limit the access of ticks to your skin.

Use insect repellents containing DEET.

Check for ticks on clothing and skin after being in tick-infested areas. Prompt removal of attached ticks can reduce the risk of infection. Check children and pets as well.

Carefully remove attached ticks with tweezers. Grasp the tick's head and mouth parts as close to the skin as possible and pull slowly until the tick is removed. Do not twist or crush the tick.

Wash the site of the attachment after removal with soap and water, or disinfect with alcohol or antiseptic.

Call a doctor immediately if symptoms of Lyme disease appear, especially after being in an area infested with ticks. Take the tick to the doctor's office.

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