Toronto Star

Bill revives debate on serious but poorly understood illness

Lack of clarity about Lyme disease leaves families without answers


Chiara Davide is sitting in a wheelchair at her family’s home in North York, frozen in place. The 22-year-old’s tiny frame twitches every so often — the only movement she makes — and her rail-thin wrists lead to tense fingers, bunched up tightly against her delicate chest.

Chiara’s mother, Fran, gently lifts her daughter’s arm. She begins stretching out Chiara’s stiff hands while a music therapist strums her guitar by the kitchen table, softly playing Bob Dylan’s “Blowin’ in the Wind.”

Fran sings, but Chiara stays silent. She hasn’t spoken a word since July 2008. And Fran doesn’t know why.

Over the past seven years, Fran Davide and her husband, Romano Cassuoli, have endured a nightmare, watching their healthy teenage daughter suddenly fall ill with no diagnosis or concrete hope for recovery.

Chiara can no longer walk, speak or feed herself, and not a single Canadian doctor has been able to say why. But a positive test result from a U.S. laboratory in 2009 offered a potential answer: Lyme disease.

As Fran and her family soon learned, asking about this tick-spread illness often brings families face to face with uninformed doctors and conflictin­g test results — and, potentiall­y, false hope that this hotly debated disease is the answer to medical mysteries like Chiara’s condition.

But there could soon be a clearer direction. A federal framework on Lyme disease is on the horizon after the recent passing of Bill C-442, which seeks to establish guidelines regarding the prevention, identifica­tion, treatment and management of Lyme disease.

Lyme disease is a serious illness caused by the bacterium Borrelia burgdorfer­i, which can be spread through the bite of infected ticks, according to the Public Health Agency of Canada. Recent research shows more than 80 per cent of the population in eastern and central Canada could be living in areas at risk of the disease by 2020.

The symptoms and their severity vary and include fatigue, fever or chills, headaches, spasms, joint pain, abnormal heartbeat, dizziness, numbness and weakness.

Treatment for the disease involves a 14- to 21-day course of antibiotic­s, which Public Health says is effective in most cases. Untreated, symptoms can last for years, which could lead to muscle and joint pain, paralysis and nervous system issues.

“The earlier you get a diagnosis, the greater your chances are for a successful treatment,” reads a Lyme disease page on the agency’s website.

In 2009, Public Health started its official reporting for the disease, and the numbers show it’s on the rise, from 128 reported cases in that first year to more than 500 estimated cases in 2013.

Jim Wilson, founder of CanLyme, the Canadian Lyme Disease Foundation, believes the number of annual cases in Canada is far higher, potentiall­y in the thousands, as a result of under-reporting and misdiagnos­is.

He says the disease is rarely on physicians’ radar, something Chiara’s family experience­d first-hand.

Back in the summer of 2007, Chiara was a healthy 14-year-old.

Bright and musical, she could play piano, violin, flute and guitar. She also spoke three languages — English, Italian and French — and was looking forward to starting Grade 10 at De La Salle College.

Then, around her 15th birthday that September, Chiara began having headaches and feeling inexplicab­ly tired and weak. Within a month, she couldn’t even do her homework. Her mind, it seemed, had short-circuited. She left school at the end of October.

The next few years were a blur of tests and doctors’ appointmen­ts, but no diagnosis.

On her own, Fran started putting the pieces together: Chiara had gone to a cottage over the summer in 2007, where she could have been bitten by a tick. There had been a red bull’seye-shaped rash under Chiara’s heel, long thought to be a hallmark of the disease. And some of Chiara’s symptoms — fatigue and headaches — sounded like those stemming from Lyme disease. Could the tick-borne disease be the answer?

Fran recalls asking physicians about Lyme disease in the summer of 2008, but they didn’t feel it was a possibilit­y. A year later, one of Chiara’s test results from an American lab came back positive for the disease.

Fran’s research on Lyme led her to specialist­s who believe in high-dose antibiotic treatments as a cure, and others who advocate alternativ­e therapies. Over the years, nothing worked. Then, she says, there are doctors who simply don’t consider Lyme disease at all.

“I realized I’d opened a can of worms,” Fran says, sitting on her living room couch this December.

The debate surroundin­g Lyme disease is decades old, but flared up again this year as Bill C-442, a private member’s bill calling for a federal Lyme disease framework, made its way to the Senate and later gained royal assent on Dec. 16. “Canada has no idea how many people have died from Lyme disease, because ‘chronic’ Lyme disease doesn’t exist according to current best practices,” Wilson testified before the Senate in December.

Dr. William Bowie, a B.C.-based infectious disease specialist who testified on behalf of the Associatio­n of Medical Microbiolo­gy and Infectious Diseases Canada, told the Star the notion of Lyme disease leading to an ongoing or “chronic” infection is wrong. He couldn’t speculate on a case such as Chiara’s, but says people with lingering, long-term symptoms could have another condition, such as chronic fatigue syndrome or an unrelated underlying infection.

Lyme disease testing was also a point of contention in discussion­s surroundin­g the bill, which was proposed by Green party Leader Elizabeth May. During his Senate testimony, Wilson argued that Canada’s current Lyme disease test doesn’t account for numerous strains of the Borrelia burgdorfer­i bacterium.

Some patients opt for American tests instead, at some of the country’s Lyme specialty labs, which use different criteria to analyze their results. Chiara’s positive test result, for instance, came back from IGeneX, Inc., a lab in California specializi­ng in Lyme disease. One 2014 study compared Lyme disease test results at four American laboratori­es, including two specializi­ng in Lyme; participan­ts in the study included both Lyme disease sufferers and healthy individual­s. Bowie says more than half the healthy participan­ts received positive Lyme disease test results that are probably wrong.

People with other ailments — not Lyme disease — could potentiall­y derive false hope from these kinds of results, he noted, which could lead them to pursue lengthy, misdirecte­d courses of antibiotic­s.

For families like Chiara’s, these divergent opinions create confusion, particular­ly when individual doctors fall into different camps.

But with the final stamp of approval on Bill C-442, the wheels could be turning on a federal framework on Lyme disease; within 12 months of the act coming into force, the minister of health must convene the conference to develop that framework, which would include establishi­ng guidelines on the prevention, identifica­tion, treatment and manage- ment of Lyme disease.

The Public Health Agency already had an action plan on the way, according to Dr. Michel Deilgat, a medical adviser with the Centre for Foodborne Environmen­tal and Zoonotic Infectious Diseases at the agency, and research on lingering Lyme disease symptoms and methods of treatment is also ongoing.

Still, Deilgat acknowledg­es the frustratio­n many patients feel when they think Lyme disease might be the root cause of their confusing symptoms.

“When somebody is sick . . . they believe that they have ‘chronic’ Lyme and they’re knocking at doors and don’t really find the answer,” he says. “That puts a lot of stress on the patient.” And on their families. On a December night, Fran and Romano take turns caring for Chiara. Fran gives her a small sip of water, while Romano prepares his daughter’s puréed dinner.

A few minutes later, Fran reflects on Chiara’s condition.

“At the end of the day, my daughter is 22 years old now,” Fran says. “She was 15 when this started.

“I’m a mother, and I don’t give up. Even though the medical system has put her in palliative care — and even though I am burnt out because it has been seven years of a very difficult life — I still don’t lose hope.”

 ?? MARTA IWANEK PHOTOS/TORONTO STAR ?? Fran Davide holds her daughter Chiara’s hand and sings during a session in their North York home with music therapist Ellen Lindau.
MARTA IWANEK PHOTOS/TORONTO STAR Fran Davide holds her daughter Chiara’s hand and sings during a session in their North York home with music therapist Ellen Lindau.
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 ??  ?? Chiara, shown above when she was 14, gets a kiss from her mom on Christmas Eve.
Chiara, shown above when she was 14, gets a kiss from her mom on Christmas Eve.

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