Doctorless Disease:Lyme Disease VictimsSearch for Answers

story & illustrations by Chelsea Gomez

The crowd is growing inside the tiny atrium at St. John Catholic High school, forcing the custodians to bring in more seating. Tonight is a one-of-a-kind event and the people of Perth, Ontario have shown up.

The guest speaker is Dr. Jennifer Armstrong, one of the few Canadian doctors willing to publically discuss chronic Lyme disease. Her willingness to address the crowd is groundbreaking for this small town, which has seen numerous Lyme cas-es in recent years.

Tonight’s attendees are only a fraction of the growing Lyme community across the country seeking information about a disease for which diagnosis and treat-ment in Canada is woefully inadequate.

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By 2020, more than 80 per cent of Canadians living in Eastern Canada will live in areas infested with Lyme infected ticks, accord-ing to Patrick Leighton, lead researcher at University of Montreal’s Faculty of Veterinary Medicine.

Dr. Armstrong is from Ottawa and has accreditation in environ-mental medicine. She is past president of the American Academy of Environmental Medicine and currently sits on the board of the Ontario College of Family Practice.

Armstrong specializes in treating chronic co-infectious diseases, and has seen a steady increase in Lyme over recent years.

The full house hasn’t surprised Lisa Saunders, co-organizer of the event.

“We had nearly 60 people at our last meeting, and we were expecting more for this one,” she says.

Saunders knows what it’s like to have life come to a grinding halt. At her peak, the four-time Boston marathoner completed the Lake Placid Ironman in 2005.

She was an active figure skat-ing coach who usually ran 10km before the break of day. But in the spring of 2009, something wasn’t right with her body.

“I was having problems doing really simple turns with my kids on the ice,” she said. Parents soon began to question her integrity.

“They asked my mother if I was drinking alcohol while coaching because my speech was so slurry,” she said.

Later that summer Lisa challenged her daughter Lexi to a bike race. Despite having clocked more hours on a bike than anyone she knew, Lisa lost her balance on a flat stretch and broke her clavicle.

“There is no reason why I should have fallen,” she said. “When that happened, I knew something was really wrong.”

As Dr. Armstrong takes the stage she is shocked at the size of the crowd. Notebooks flip open, and dozens of pens across the room click to attention. Everyone sits on edge prepared for any new insight.

In the battle against Lyme, sufferers must become their own advocates. Victims incur thousands of dollars in medical fees and are forced to travel great distances to access adequate treatment.

Sitting quietly in the front row is 27-year-old Alicia De Cou.

Alicia’s mom, Myrna, co-organized the event and is a strong ad-vocate for Alicia’s battle with Lyme. Alicia’s gaze never leaves Dr. Armstrong, but Myrna’s focus is entirely on Alicia.

Alicia’s journey with Lyme began in grade school, when she was a bright-eyed teenager in love with horses. At 14, Alicia got a tick bite at the barn and later developed a lymphocytoma – an inflamed, red wart.

At the time, Alicia’s doctor didn’t think much of the reaction, but it is now considered a symptom along with the common rash associated with bites from Lyme-infected ticks.

Alicia began experiencing arthritic pain and difficulty keeping food down. The pain was affecting her sleep and Alicia was getting increasingly anxious.

“It’s an odd pain to describe,” says Alicia. “For me it affected my hips, neck, shoulders, and knees.” Pain is common for horseback riders and Alicia figured she had better stop complaining because

she didn’t want to give up riding. “But now I can’t ride any-

way,” she concedes. “So I guess I should have kept up the com-plaining when the pain started.”

Alicia’s pain increased to the point where she had to shop for groceries during the slow times of the day.

“If someone brushed up against me or touched me, it felt like I had been punched,” she says.

Doctors said it was psychological and prescribed her an anti-depressant. Alicia doesn’t remember anything during the three weeks she was on the medication.

After ending up in the hospital, she stopped the prescription and her symptoms remained undiagnosed.

Infection and TransferLyme disease is caused by bacteria called borrelia burgdorferi,

which are most commonly transferred through deer tick bites. The telltale signs of infection are a bullseye rash and flu-like symptoms.

If detected quickly, a short four-week dose of antibiotics is con-sidered a successful treatment for acute Lyme. However, as many as 60 per cent of victims don’t develop a rash, meaning the infec-tion is left undetected for months, even years.

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For many victims, the most frustrating part of the disease is misdiagnosis.

Aside from tick bites, Lyme bacteria can be transmitted from mother to fetus, and a recent study in the Journal of Investigative Medicine suggests it may also be sexually transmitted.

Marianne Middelveen, veterinary microbiologist from Can-ada and lead author of the study believes the results can have far-reaching consequences.

“Our findings explain why the disease is more common than one would think if only ticks were involved in transmission,” she says.

Blood transfusions are also causing concern. The Canadian Blood Services does not test blood for Lyme disease.

When 63 year-old Ken Frizell developed stomach ulcers in 2003, he underwent multiple transfusions. Shortly after, he developed Lyme-like symptoms

“I was never bitten by a tick,” says Frizell. “I believe that I got Lyme from infected blood.”

The experienced Hydro One lineman began feeling stiffness, muscle pain, and poor balance, and he remembers getting con-fused easily.

At first he attributed it to just getting older, but the muscle pain and lack of energy eventually forced him into early retirement.

“I couldn’t stay awake for more than four hours a day,” says. He wasn’t officially diagnosed with Lyme until 2010, two years after retiring.

Symptoms and Problems of MisdiagnosisLyme bacteria belong to the same bacterial family as HIV/

AIDS and syphilis, and they suppress the immune system in similar ways.

“As Lyme disease progresses in the body, the immune system modulates,” says Dr. John Scott, Canadian researcher and founder of the Lyme Disease Association of Ontario. “Over time, the immune system is suppressed, and fewer antibodies are produced.”

For many victims, the most frustrating part of the disease is misdiagnosis. Most Lyme patients exhibit an array of symptoms, and spend months and even years being mistreated for Alzhei-mer’s, autism, chronic fatigue, fibromyalgia, irritable bowel, Lou Gehrig’s, lupus, multiple sclerosis, depression, anxiety, and Parkinson’s.

Doctors still debate whether Lyme simply mimics these other diseases or whether Lyme bacteria instigate them.

Dr. Armstrong believes many medical doctors in Canada are incapable of diagnosing Lyme because the standard approach to medicine is based on single-symptom diagnosis.

“Medical students are not taught about multi-symptom diseases,” says Armstrong. “As a doctor with experience in environmental medicine and treating chronic disease, I look at the constellation of symptoms that cause pain, which is essentially what Lyme does.”

In May of 2012 Alicia cut her hand while trying to make break-fast. The wound was stitched up at the hospital, and it seemed to heal properly.

A few weeks later her hand began to distort and she lost func-tion in some of her fingers. A few months later, her other hand became distorted as well.

She underwent neurological testing and was diagnosed with fibromyalgia. Still, doctors could not explain why the tests also found neurological damage, which is not caused by fibromyalgia.

“They advised me to keep searching,” says Alicia. “They were certain there was some-

thing else at stake.”

Complications of Testing for Diagnosis

In her effort to get diagnosed, Lisa under went three MRIs, mul-tiple appointments with a neurologist, and even agreed to see a psychologist. Despite this, her symptoms continued to baffle Ca-nadian doctors.

Lisa did the Canadian Lyme tests but an Ottawa lawyer suggest-ed she also take the IGeneX test from California.

Lisa got the required referral from her family doctor. Since doctors in Canada do not know how to read the IGeneX results, Lisa travelled to a Lyme-literate doctor in New York for a prop-er reading. Only then, in the spring of 2010, was she confirmed Lyme positive.

After two friends suggested Lyme might be the cause of her symptoms, Alicia started her own investigation.

“When I looked it up, all my symptoms were there in front of my

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“If someone brushed up against me or touched me, it felt like I had been punched,” Alicia says.

Line represents the limits of tick survival regions according to current temperature suitability.

Recent studies by Patrick Leighton, lead researcher at University of Montreal’s Faculty of Veterinary Medicine estimate that by 2020, more than 80 per cent of

Canadians living in Eastern Canada will live in areas infested with Lyme infected ticks.

face,” she says. “I even saw a picture of the reaction I had devel-oped from the tick bite years ago.”

Alicia’s neurologists agreed that she may have Lyme, and they strongly suggested she do the IGeneX test.

When the tests came back from California, two Lyme–literate Canadian doctors read the results and diagnosed her with Lyme.

Diagnostic testing for Lyme is hotly debated in Canada. Two tests are currently used: the Western Blot and the Elisa.

According to Health Canada, “this two-tiered approach to blood testing for Lyme disease is based on the best available scientific evidence.”

Lyme-literate doctors, on the other hand, completely reject the Canadian tests and advise patients to pay out-of-pocket for the IGeneX test.

They argue that Canadian tests are oversimplified and produce too many false negatives. Lyme bacteria have over five subspe-cies, over 100 strains in the US and 300 strains worldwide. Current Canadian tests screen for only one strain.

Dr. Armstrong believes that Canada is unwilling to change the current testing methods because of money.

“Most of the tests we do in this country are done through our public health system,” says Armstrong. “Public Health has had a decrease in funding and a lot of tests were getting cut.”

Treatments for Chronic LymeIf Lyme turns chronic, treatment is extremely contentious. The

disagreement centers on the use of antibiotics. When chronic Lyme patients undergo a standard four-

week antibiotic treatment, blood tests come back negative for the bacteria. Despite this, victims still exhibit symptoms of the dis-ease, sometimes with extreme severity.

The doctors who argue against long-term antibiotics say that since the bacteria cannot be found through tests, further medica-tion should not be prescribed.

But Dr. Scott claims to have 300 peer-reviewed articles showing the persistence of Lyme bacteria after the standard two- to four-week antibiotic treatment.

Lyme-literate doctors believe the bacteria are able to evade tests by adapting inside patients’ bodies.

“Borrelia burgdorferi sequesters and hides in immune-privi-leged sites; namely, ligaments, tendons, brain, eyes, and bone,” says Scott. “These sites are very hard to penetrate with current antibiotics, especially in older patients.”

The problem in Canada is that antibiotic prescriptions are highly regulated and come with a maximum dosage of 30 days. Doctors found to be prescribing antibiotics for longer periods risk being investigated by their provincial colleges and put their prac-tices in jeopardy.

Ken Frizell consults with Dr. Steven Bock of Linebeck, NY to keep his tests up to date. It costs Ken almost $13,000 per year to do so. Until now, Ken’s family doctor has been willing to write the antibiotic prescriptions, but Ken is always anxious when it comes time to renew.

“He can decide to stop the medication at any time,” says Ken. And for Ken, relocating to the United States for treatment is not possible. Since he contracted Lyme, Ken’s wife has had a brain aneurism and is in a nursing home.

“I can’t leave,” says Ken. “If the doctor cuts me off, I’ll have to find a way to pay for the meds myself.”

The threat for Canadian doctors is real. Eric Murakami was one of the doctors who diagnosed Alicia with Lyme. In 2008 he took early retirement from his 48-year practice, in part due to pressure

from the Canadian College of Physicians and Surgeons over his use of long-term antibiotics to treat Lyme in British

Columbia.

More than 230,00096% of reported lyme cases in the USare from the North-East states.

Many other doctors across Canada have had the same experience.

Dr. Armstrong understands the threat to her practice because she chooses to treat chronic Lyme patients, but she continues anyway. Her question to herself is, “As a doctor, how can I not treat these people?”

She may be sympathetic to her patients, but she is also very careful to rely on research.

“I always back up what I do with science,” she says. “Medicine will not get very far if we just keep denying that chronic Lyme exists.”

Lisa’s connections in the medical community allowed her to ac-cess intravenous antibiotic treatment for over a year. She has been medica-tion free for over two and a half years.

She has regained most of her strength and has seen large improvements in many symptoms that used to plague her. While she knows that she is lucky to have recovered so well, she is still ad-justing.

“I just have to learn to accept that I can’t do everything I could do before I got sick,” she admits. “My normal is different now.”

She just finished a 30km race in Ham-ilton this spring. “The best part was rac-ing with my sister,” says Lisa. It was the first time she has been able do so since the Ironman event nine years ago.

Steps forward for Lyme in CanadaAs concern about Lyme grows, var-

ious initiatives are taking root. One World – One Health is a collaboration of medical professionals from both ani-mal and human studies.

While Lyme shakes up the human medical community, the veterinary community has been dealing with the disease quite successfully.

“I have treated nearly 20 Lyme positive dogs in the last year alone,” says Dr. Greg Stevenson of Blueberry Creek Veterinarian Clinic in Lanark County.

Many veterinarians have increased testing and have even incor-porated vaccinations into regular booster shots for Lyme-prone dog breeds.

Paul Bousfield of Milton, Ontario never suspected that his dog’s routine vet visit could change his own life. Paul had been suffering with stroke-like symptoms that had puzzled his family doctor for years.

It took only one look from his veterinarian to say, “I think you have Lyme disease.”

Paul left the vet’s office, did more research, and requested fur-ther testing. He tested positive for Lyme and began a system of homeopathic treatments with local doctors in the Toronto area. He is still in recovery.

Lyme advocates in Canada want a national change in the Ca-

nadian healthcare system, which currently relies on the contro-versial Lyme disease guidelines created in 2006 by the Infectious Diseases Society of America.

In recent years members of the IDSA have been found to have conflicts of interest such as working as consultants for insurance companies, holding patents on Lyme-related products and having financial interest in not recognizing chronic Lyme.

Lymedisease.org (formerly the California Lyme Disease Association) has petitioned against the IDSA guidelines stating they are based on outdated science and that 40 per cent of the studies cited were conducted by the authors of the guidelines.

The National Guidelines Clearinghouse requires that guidelines be updated every five years in order to remain listed, according to lymedis-ease.org. The IDSA’s Lyme guidelines have not been updated since being written.

Improvements for patients and doc-tors in Canada may be on the horizon as the Lyme issue is starting to get the attention of national politicians.

Green Party Leader Elizabeth May of British Columbia put forward Bill-C442 calling the Canadian government to im-plement a national strategy for better testing and treatments across Canada.

The bill had its second reading early in the spring of 2014, which means that victims like Alicia may benefit from greater resources over the next few years.

Although Lisa received antibiotic treatment at home, Alicia’s road to recovery may not be as easy.

Since receiving her IGeneX results, Alicia has had to work with a naturo-pathic doctor from British Columbia, where provincial laws allow naturo-

paths to prescribe antibiotics. Alicia has had four months of oral doxycycline so far. The next

step is intravenous antibiotics. To begin treatment, Alicia needed to find an Ontario doctor willing to prescribe the medication. After meeting Alicia, Dr. Armstrong agreed to take her on as a patient.

“It is a huge relief to have someone who knows what they are doing close at home,” says Alicia. “I was petrified, and my body still does some pretty scary things. It is awesome to have a doctor I can call.”

Dr. Armstrong says she will keep Alicia on antibiotics, but the future of treatment for chronic Lyme sufferers is never certain.

Every doctor treating it in Canada runs the risk of repercussions that could halt their careers. But for now, Alicia and Myrna are comforted to know that they have a plan in place.

“Basically everything in my life makes sense now,” Alicia says with relief. “

“I am confident that I will come out of this and will be 90 per cent of the person I was meant to be, which speaking as a person who functioned at 50 per cent for so long, that seems beautiful to me.” p

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