Ticking bomb?

Globe and Mail - Canada
I lay on the emergency table, my left breast prepped for microsurgery. The resident peered at the underside of my bosom to examine the creature clamped in the middle of a dark and angry rash. The spider-like bug had been there for at least three days, having hitched a ride all the way from the grassy marshes of Prince Edward Island, where I had spent an afternoon in hip waders and bulrushes.

"I've seen hundreds of ticks," the doctor assured me, his scalpel flashing under the hospital lights as he slashed into my breast to dislodge the bug. "I've picked them off myself up north.

"It's not a tick," he continued, gluing my skin back together. "So don't worry."

Three years later, I wasn't worried — I was panic-stricken. A strange illness had begun to assault me. My body felt like a powder keg. My skin was on fire. I was dizzy and had chest pains. My muscles twitched, and I had trouble keeping my balance when I walked.

I shuffled from doctor to doctor, desperately trying to convince someone that the symptoms were not something a prescription for anxiety pills would heal. I was tested for HIV, syphilis, West Nile; nothing showed up. I was finally told I most likely had two autoimmune diseases — that I was in the early stages of both multiple sclerosis and lupus.

My own layperson's investigation suggested a more plausible explanation: Lyme disease, tracing back to that bite three years before.

What I could never have imagined as I set out to seek treatment was that I had stepped into the middle of one of medicine's most vengeful clashes — a war that not only pits
patient against doctor, but also physician against physician. Patients' lives are in the balance as U.S. doctors lose their licences, casting a chill over the entire North American medical community.

This war has claimed hundreds of thousands of Americans,
and many more who go undiagnosed and untreated — not only
victims whose lives are diminished, but also many who are
in wheelchairs or bedridden.

Many Canadian doctors and medical institutions are like
conscientious objectors, not only retreating from the
battle but also seemingly denying its existence. I
encountered outright hostility to the possibility that I
could have been infected by a tick bite in Canada.

Lyme disease is an acknowledged epidemic in the United
States. There are hundreds of thousands of Lyme patients,
most of them in states next to the Canadian border. Last
year, there were more than 21,000 reported cases of Lyme
disease in the United States, but the Centers for Disease
Control believes that the number is actually 10 times
greater. The number of Americans infected with Lyme disease
over the past 30 years could be as high as three million.

Daryl Hall of Hall & Oates recently cancelled a tour
because he was too sick with Lyme disease to travel. He is
just one among a star-studded cast of victims that also
includes best-selling authors Rebecca Wells and Amy Tan. By
the time she was diagnosed, several years after she first
became ill, Ms. Tan was hallucinating. She has recently
joined the groundswell of increasingly rancorous
patient-advocate groups south of the border.

The CDC's map shows areas of widespread Lyme infestation
all along the eastern seaboard. But here in Canada, ticks,
which are carried by songbirds and mice, apparently need a
passport.

"It's here in minute cases, confined to a relatively small
number of areas," says Paul Sockett, who heads the Health
Canada department that oversees diseases that pass between
animals and humans. He argues that the endemic areas in the
United States may be located in the middle of those states,
so the ticks wouldn't make it as far as the Canadian
border.

But Ernie Murakami, in Hope, B.C., says his own caseload
shows the official statistics are deeply flawed. Dr.
Murakami, known among advocacy groups as one of a handful
of "Lyme-literate" doctors here, says he has treated 1,000
Canadians for the disease, from Halifax to his home
province. He has counselled another 1,000 patients and
their doctors by telephone.

Dr. Murakami says Canada is on the cusp of its own
epidemic. "It's atrocious just how many cases are being
missed by doctors," he says. "People's lives are being
ruined. They're completely disabled when all they needed
was antibiotics."

Many people go years without a proper diagnosis. They lose
their health, their jobs, their homes and sometimes friends
and family who have trouble comprehending just how
debilitating the disease can be. I was much luckier than
most, because I began antibiotic treatment seven months
after my first symptoms appeared. But even I was already
too ill to work.

In the doctors' defence, Lyme can be a difficult disease to
diagnose. It is dubbed "the great imitator" because it
mimics so many other diseases. People with Lyme disease are
most commonly misdiagnosed with everything from arthritis
to fibromyalgia, chronic fatigue syndrome, arthritis,
multiple sclerosis, Lou Gehrig's disease, Parkinson's,
Alzheimer's and bipolar disorder, to name a few.

While German researchers first recognized the bacterium
more than a century ago, it wasn't until a group of mothers
in Lyme, Conn., noticed that their children had all been
suddenly diagnosed with juvenile arthritis that researchers
began to search for the culprit. Lyme disease has now been
reported in 50 U.S. states, but is also on the upswing in
China, Europe, Japan, Australia and the former Soviet
Union.

The name of the bacterium is Borrelia burgdorferi. It's
spread by deer ticks — often no bigger than a poppy seed —
when they clamp on to the skin, feeding on the host's blood
while allowing the bacterium to invade the body.

The organism moves better through tissue than in blood,
eventually embedding itself in the central nervous system,
heart, brain, liver, spleen and joints, causing everything
from mild pain to dizziness and paralysis. Often the first
sign of Lyme disease is a bull's-eye rash. If recognized
early enough, the disease is easily stopped in its tracks
with a few weeks of low-dose antibiotics.

Health Canada's numbers do make it seem that Canadians have
little reason to worry. There have been 310 reported cases
of Lyme disease in Canada since 1994, mainly in Ontario and
B.C., and more than half reportedly caused by tick bites
outside the country. But those numbers do not include the
growing army of people like myself, who got their positive
tests at specialized U.S. labs.

And Dr. Sockett's view is not shared by everyone at the
federal health agency. Robbin Lindsay, a Health Canada
research scientist, says the organization is aware of
several areas infested with Lyme-carrying ticks, including
Lunenburg, N.S., and Rondeau Park, Presqu'ile, Point Pelee
and Long Point in Ontario. Much of British Columbia, Dr.
Lindsay says, is also rife with Lyme-infected ticks. In
reality, she warns: "You can acquire a tick that is
infected pretty much anywhere in Canada."

Jim Wilson of Westbank, B.C., has witnessed the toll of
Lyme disease within his own family and across the country.
He was infected with the bacteria in Nova Scotia in the
early 1990s, but it wasn't until his own daughter become
ill a decade later in B.C. that he realized the extent of
the problem in this country.

He founded the charitable Canadian Lyme Disease Foundation
two years ago to give a national voice to the disparate
patient groups in various provinces. He says he receives
dozens of e-mail messages a day from people trying to find
help.

"Let's just admit that we're missing something very big
here," Mr. Wilson says, adding that his website gets more
than 40,000 hits a day. "I just got a call from a reporter
up in Gander, Nfld., wanting to know what's going on,
because so many people believe they've got Lyme. It's
everywhere but it's nowhere, according to Health Canada."

Because of the lack of acknowledgment from the government,
Lyme disease isn't even on the radar of most doctors,
contributing to the misdiagnosis and debilitation of
hundreds of Canadians, according to Mr. Wilson's lowest
estimates.

In my own case, by the time I ended up in the office of Jay
Keystone, one of Canada's top infectious-disease doctors, I
had already seen about 20 doctors. It was early spring and
Dr. Keystone carefully reviewed my file before telling me
that he didn't believe it was Lyme disease that was making
me ill — too long between the bite and the manifestation of
the disease, he said.

He agreed that my symptoms were consistent with Lyme
disease, and that it probably had been a tick bite I had
three years ago. But my illness was more likely caused by
stress, he explained. "Lyme disease is the most
overdiagnosed disease in North America," he continued.
"Even if you did test positive on a Lyme disease test, I
would test you again and again and again." He said he
didn't want to treat me for a disease I didn't have, and
tests can produce false positives.

I was stunned. What cancer or heart-disease patient, I
thought to myself, has to prove their illness over and over
and over again to get treatment? I left his office in
tears, believing that no one in Canada was ever going to be
willing to treat me. A few weeks later, however, I found a
doctor — after obtaining a positive test from a California
lab.

"If someone's living in downtown Toronto, the chances of
them having Lyme disease are incredibly low," Dr. Keystone
explains now. "If we tested every patient who comes in with
symptoms like you had, we would have huge numbers of people
with false positive tests. ..... I'm not a Lyme expert, but
as far as we can tell, there's very little Lyme disease in
Ontario."

It may seem astounding that doctors who devote their lives
to healing the sick would willingly turn patients away at
the door. But the medical controversy over both the
diagnosis and treatment of Lyme disease has created a
difficult climate for patients and doctors alike.

Over the past few years, more than 50 physicians in states
such as New York, Connecticut and Michigan have faced
lengthy investigations costing hundreds of thousands of
dollars for administering long-term antibiotics to
Lyme-disease patients. Many have been disciplined and some
have lost their licences, creating a climate in which many
doctors are reluctant to take on Lyme patients.

The most acrimonious debate is over one question: How much
antibiotic therapy is enough?

On one side is a group of scientists and front-line
physicians who believe that the symptoms of Lyme disease
are diverse and defy easy diagnosis and treatment. If not
caught in the initial phase, when both sides agree the
disease is highly curable, patients will require months, if
not years, of antibiotic therapy. If patients are still
symptomatic after six weeks of antibiotics, these doctors
believe they haven't been treated long enough.

On the other side are the majority of infectious-disease
researchers who develop drugs, receive research grants and
often advise insurance companies. They believe that Lyme
disease is easy to diagnose and cure. If the patient
doesn't fully recover after three to six weeks of
antibiotics, the patient is suffering from the aftershocks
of the disease, they maintain, and further antibiotic
therapy is pointless.

They believe that lingering symptoms are caused by an
autoimmune response triggered by the initial infection. And
they warn that long-term antibiotic treatment can cause
side effects such as allergies, colitis, gallstones and
liver damage, and risks creating drug-resistant superbugs.

Both sides have scores of studies supporting their
opinions. As a result, many physicians are either ill
informed or simply unwilling to treat patients, says Pat
Smith, founder of the U.S. National Lyme Disease
Association, based in New Jersey.

"Lyme-disease patients are the lepers of the 21st century,"
Ms. Smith declares. She says she has referred dozens of
Canadians who can't find treatment here to physicians in
the United States. "No one wants to treat them. Sometimes
it is just ignorance, and sometimes it's that doctors are
pleading ignorance because it's just much simpler not to
get involved."

Maureen McShane has been on both sides of the divide. Dr.
McShane lives in Montreal, but practises in Chazy, N.Y. She
was bitten by a tick in the Laurentians two years ago. By
the time she finally figured out for herself what she had,
she had already seen scores of doctors in Montreal — from
neurologists to a rheumatologist, who said her symptoms
were caused by early-stage menopause.

She admits that, before her own diagnosis, she didn't know
much about the disease or the controversy. "Honestly, it's
not that I was a bad doctor, but I didn't recognize the
signs of Lyme disease myself," she says. "When I did hear
about Lyme disease, I thought to myself, 'If only they'd
get regular exercise and eat well, they'd get better.' I
had no idea what these people were going through."

It took two years of antibiotics before she began to feel
well again.

Dr. McShane says she understands that doctors are in a
difficult position. "They know that if they prescribe
long-term antibiotics, they run the risk of losing their
reputations and their licences."

Critics charge that the medical boards in many U.S. states
have taken sides inappropriately in an argument that should
be fought in journals and at medical conferences. It is,
they claim, the insurance companies — which have huge
stakes in the outcome of the battle because they don't want
to pick up the tab for expensive long-term therapy — that
are responsible for driving the Lyme-disease agenda.

New York state assemblyman Joel Miller at first dismissed
such complaints from his constituents. "But when I began to
investigate it for myself, I found that most of the
complaints against doctors were filed by insurance
companies," he says. "It's a travesty that we've fought
years to try to correct."

Mr. Miller is one of a handful of legislators in his state
responsible for helping recently to overhaul the laws,
allowing physicians the freedom to treat Lyme disease in
the manner they feel is most effective, without the threat
of investigation by medical overseers.

Although doctors in Canada have yet to face such scrutiny,
some who are treating Lyme disease with long-term therapy
have expressed concern that they, too, will be hauled
before their medical boards.

The other major concern is that testing is still so
inaccurate. Even the U.S. Centers for Disease Control
advises doctors to use the tests only to support a
diagnosis based on patient symptoms. Health Canada says it
has no idea how precise the tests are. Some doctors believe
that the tests miss 40 to 60 per cent of true Lyme cases.

One of them was Joan McComas, a 56-year-old tenured
professor who lives in Ottawa. Like many Lyme patients, she
does not recall being bitten or developing a rash, but she
had been camping near Thunder Bay in the summer of 2000
before she came down with a flu she couldn't shake. Over
six months, her list of maladies began to multiply —
crushing fatigue, trouble with her balance, odd smells like
mothballs and dishwater detergent. The doctors were
mystified. Maybe it was a brain tumour.

Two years later, she had lost control of her body, her
limbs jerking violently every few seconds. Four years
later, she was falling backward and sideways, and
struggling to walk with two canes. "I could deal with
that," Ms. McComas says. "What I couldn't deal with was
that I was losing my ability to think. ..... I was having
trouble finding the right words. I couldn't even recognize
the faces of people I knew."

Then came a new diagnosis, of an extremely rare,
degenerative disease. The doctor told her that she had a
few years to live, and she prepared herself. A few months
later, her doctor told her that she wasn't going downhill
fast enough. Her illness, he said, was all in her head.

One spring weekend at an Ottawa drugstore, she described
her symptoms to a pharmacist. "Did you consider the
possibility of Lyme disease?" he asked. She had been
tested. A negative test in Ontario didn't mean much, he
told her. The tests produce both false positives and false
negatives.

My own doctor, infectious-disease specialist Hovsep
Baghdadlian, says that of the 125 people he is currently
treating for Lyme disease, only 10 per cent tested positive
on Ontario tests. Like me, many doctors treating Lyme
disease have turned to specialized labs in the U.S. But
some Canadian doctors are loath to recognize foreign tests.

When Ms. McComas received a positive test from a California
lab, her infectious-diseases doctor in Ottawa refused to
recognize her test results or treat her. Feeling she had no
choice, she headed to New York, spending $12,000 on medical
treatment. After a year of both oral and IV antibiotics,
she says she's more than 90 per cent better.

Should doctors prescribe antibiotics when they aren't 100
per cent certain that the patient has Lyme disease? Jim
Wilson, for one, is unequivocal: The devastating
consequences of physical, cognitive and functional
disability associated with Lyme disease far outweigh the
risks of antibiotic therapy.

For its part, Health Canada says it is working hard on Lyme
disease. It is conducting annual surveys to identify
endemic areas, and has recently committed $800,000 in
research funds to the disease. The agency's Paul Sockett
says there is a proposal on the table to meet with the
provinces this year to discuss Lyme disease.

But Mr. Wilson says it's not enough: "We are years behind
in all of this. They have done absolutely nothing in terms
of advising people of the seriousness of what's in their
backyards."

As for me, five months and a truckload of antibiotics
later, the bacterium that invaded my body appears to be
receding. My worst symptoms are now long gone. Still, soap
won't wash away the medicinal smell that permeates my skin.
My teeth are yellow from all the antibiotics. Dr.
Baghdadlian tells me that the stain will go away as soon as
I stop taking the pills.

"When?" I ask him. He shrugs and sighs. Maybe a few more
months. Maybe many more.

Still, I am lucky. I found a doctor willing to do what many
doctors would not. I am getting better. Slowly.

It's horrifying to have a disease wrest control of your
body. It's just as terrifying to struggle in vain to
convince doctors of the seriousness of your condition — or
even its existence. I managed to do both, but the most
frightening thing of all is that many victims of Lyme
disease have failed on both counts.