When is a chronic debilitating disease not a disease? If you live in BC, it could be when it’s Lyme disease. The very existence of this crippling illness is the subject of fierce debate within our medical community. But in the background of this debate the voices of many victims, desperately seeking an effective treatment, go unheard as they struggle for recognition by doctors and public health officials. Time, in this case, does not heal

By David Madison

"I was a pain-wracked zombie. I was so tired I could barely walk. Everything hurt. I no longer laughed or had any patience with my family. I was a burden to them and really didn’t care if I lived or died.”

Hilary Wahlstrom, 52, lives in Salmon Arm. She was once a vibrant and active secondary school teacher involved in many outdoor activities in the area. In 1998, she noticed a bite as well as what could be described as a “bull’s-eye” rash. Her father, a retired physician, didn’t recognize it as anything to be concerned over.

The rash eventually went away, but unbeknown to Hilary, the bacteria, Borrelia burgdorferi, was starting to do its dirty work. Hilary’s health began to decline. “My husband and family and I had taken a year off work and went to France. Even with that relaxed lifestyle, I was starting to feel physically and mentally down,” she says. “I had been teaching French in secondary schools for years, but now I was having trouble grasping the correct grammar and new vocabulary. It was really weird.”

This pattern continued when Hilary returned to her teaching job. “At first I thought I was just having trouble adjusting to work. My doctor thought I was stressed out and prescribed antidepressants and suggested counselling,” she says. “Nothing worked. The headaches, muscle and joint pain and forgetfulness were becoming worse.” Hilary found teaching almost impossible and was troubled now by hallucinations. At one time her students expressed their own concerns, thinking she might be drinking on the job. When she sought more medical advice she was told it was all in her head. “Who was I to argue?” she says. “I didn’t trust my own judgment at all by that time.”
Insult was added to injury when Hilary approached her doctor with some literature on Lyme disease and asked to be tested. She was told, “Oh, everybody thinks they’ve got Lyme disease,” and was summarily dismissed.

Teeny, Tiny Pest—Big Problem
Many people have never heard of Lyme disease. It was unknown until 1975 when a resident of Lyme, Connecticut, concerned by the large number of people in the community suffering from an arthritis-like ailment, prompted a study confirming the existence of a specific bacteria, Borrelia burgdorferi. This bacteria, a spiral-shaped bug of particularly devious means, was tracked down when it was found that the common connection among sufferers in the community of Lyme was contact with deer ticks.

These small ticks use deer as a great way to get around. In time the tick drops from the animal to the grass, and then—waiting like a hitchhiker on the highway—brushes onto the leg of a passing person and finds a source of food—human blood.

The deer tick in the second (nymph) stage of life is of most concern because of its small size and big appetite. Scientists discovered that the bacteria live in the tick’s gut and when the tick is enjoying a prolonged meal, the bacteria can move into its victim’s bloodstream. The tick is therefore, known as a “vector” for the disease.

But can a little tick in the eastern United States be a problem in the Okanagan?

The tick may be small (about the size of short-grain rice) but the disease has turned out to be very large. For many years, Lyme was not considered possible in Western Canada. We didn’t have the same type of ticks, our climate was too harsh, the environment was not suitable and so on. However, with the help of climate change and migratory birds to transport the ticks, there is growing evidence that Lyme exists right here. For those who are victims of the disease there can be no question.

Establishing Hope
Jim Wilson now lives in West Kelowna and is the founder of CanLyme, the Canadian Lyme Disease Foundation. In 1991, living in Nova Scotia, operating a small publishing company, working as an insurance investigator and staying physically active, he noticed a rash while dressing for baseball. “It was a circular rash, quite large, with a red centre—like a bull’s-eye on a target,” he says. The characteristic bull’s-eye rash is one of the definitive indicators of a Lyme infection.

Nova Scotia turned out to be a hot spot for the disease and was noted by Dr. Muhammad Morshed of the BC Centre for Disease Control at UBC to have seen an increase of between 10 to 20 per cent in recent years. At the time, though, Jim didn’t pay the rash much heed.

Jump ahead a few years and Jim, now living in the west, was a different person. “I had the physical symptoms of Parkinson’s, muscular dystrophy, chronic fatigue syndrome and many other degenerative diseases. I could no longer work. My insurance job, that often required I read and write complex papers, was beyond me. My cognitive skills were failing and I took a day to do what I used to be able to do in an hour,” he says. “I got in my car once and had no idea how to put the key in to start the vehicle. My wife found me there trying to remember how to drive. Here I was at age 38 convinced I was in the throes of dementia. I was really scared.”

Jim’s doctors weren’t able to identify the problem. “Blood tests were done,” he says, “but the bacteria does not remain in the blood—it bores through the walls of the veins and into the body tissues, so it remains hidden. The worst thing was I felt terrible and could no longer function normally, but the medical response was to suggest I see a psychiatrist. Even my vision was going. It was only after my wife did some reading that we stumbled on Lyme.”

A reference in a book led the couple to a doctor in Squamish who had some experience with this disease. Jim was given treatment with antibiotics and after three weeks he says, “I began to feel reborn.” However, the treatment continued for several more years before his health was almost back to what it had been before the infection.

Jim’s experience with Lyme didn’t end with himself. His daughter was also infected—in the Okanagan—and today wears a pacemaker that Jim believes is the direct result of a Lyme infection that was not treated properly and promptly. He believes this infection was contracted while attending school in West Kelowna.

As he dug deeper to learn more about the disease, Jim found more people struggling with similar symptoms. “Often they were diagnosed with fibromyalgia, chronic fatigue syndrome, arthritis, lupus, MS or even psychiatric disorders,” he says. They were living in the Thompson-Okanagan, a region that was not considered at risk for Lyme. Additionally, many local medical practitioners had no understanding of Lyme and were very reluctant to prescribe a lengthy and intense treatment with antibiotics for something they were told was not a problem. All of this led Jim to found CanLyme to support victims and educate doctors.

But it’s an uphill fight.

Canada seems to follow the lead of the United States in many things, including medical treatment protocols. The Infectious Disease Society of America (IDSA) determines the testing required for diagnosis of infectious diseases and the approved methods of treatment. The directors of this organization have been steadfast in their refusal to see Lyme as a concern and require that a victim must show a positive result on two specific blood tests before Lyme is confirmed.

However, serious questions have arisen about possible conflict of interest. In a Feb. 5, 2009, blog posting on the Psychology Today website, Pamela Weintraub, author of Cure Unknown: Inside the Lyme Epidemic and senior editor at Discover Magazine, wrote:

“Richard Blumenthal, the attorney general of Connecticut, launched an antitrust investigation into IDSA and its guidelines?…?.They consulted for big pharma and owned Lyme-related patents; they received fees as expert witnesses in medical-malpractice, civil and criminal cases related to Lyme disease; and they were paid by insurance companies to field — and help reject — Lyme-related claims. Of the 14 authors, nine received money from vaccine manufacturers and four were funded to create test kits: products that would be more likely to reap profit if the definition of Lyme disease remained essentially unchanged.”

Pamela takes the IDSA to task on these issues as well as the use of tests that have been shown in a variety of studies to be inaccurate in diagnosing Lyme. She appeals for the medical profession to be aware of the current research and to make use of new test procedures now available.
Any changes will take time.

Real People, Real Suffering
Meanwhile, Lyme disease continues to wreck lives in the Okanagan.

Like Hilary Wahlstrom, Alison Kirby, 46, was also a teacher. She worked in School District 22 until recently when the ravages of Lyme forced her to leave the classroom. Her experience is a litany of frustration and misdiagnosis. “I think I was bitten by a tick somewhere near Cherryville when we were camping,” she says.

As the disease progressed, the medical symptoms became more severe. “I was told at first it was a new type of arthritis and to take some ibuprofen and I would be fine. When that didn’t help a rheumatologist put me on immunosuppressants. The pain continued until by February 2005 I could not get out of bed without help.”

Alison began to suffer the cognitive symptoms as well. “I couldn’t remember people’s names. Spelling simple words became difficult, my speaking was confused and I had trouble understanding others,” she says.

Like many Lyme victims, Alison found out about the disease by accident. Her daughter, living in the Caribbean, stumbled on an article listing symptoms. It all connected and she phoned her mom right away. “Not one of my doctors had suggested the possibility of Lyme disease,” says Alison. “I contacted the Canadian Lyme Disease Foundation and got some material from them. I discovered I had 43 of the 60 listed symptoms they published.”

She made contact with Dr. Ernie Murakami, recognized as the expert on Lyme disease in BC. Alison went to his office in Hope and after some lengthy examinations was clinically diagnosed with Lyme. Serology tests supported the diagnosis and she began antibiotic treatment. Nine months later her symptoms had subsided, but she was still struggling with some of the co-infections that are associated with Lyme.

In the fall of 2006 she began to relapse. “I went to a walk-in clinic here in Kelowna. They were very dismissive of Lyme disease,” says Alison. “My new family doctor also refused to do any continuation of my treatment. I was accused of just being depressed. Doctors treated me as though I was the scum of the earth. They should be ashamed of the way they deal with Lyme victims. We are sick and deserve to be treated as others who are ill.”

Cali James, 29, of Vernon attended an outdoor education program in the North Okanagan during high school in the late 1990s. This may have been where she had her own encounter with a tiny tick nymph. Cali had no reason to remember the bite—like most insect bites it was innocuous at the time. The long-term results, though, have been devastating.

“It’s sometimes hard to believe, that not long ago I was a production manager and researcher of major television productions, managing budgets, payroll, travel arrangements, production schedules, crew, freelancers and so much more,” she says. “And now I am having troubles answering questions for this interview—even when I myself have had to interview the likes of Tommy Hunter and George Canyon and never thought twice about it!”

Cali received the gamut of diagnoses based on her symptoms. “I was told I had chronic fatigue syndrome, fibromyalgia, polycystic ovarian syndrome, amenorrhea, MS and more. Doctors kept throwing different meds at me over the years; I became a ‘trial and error’ patient—often getting more error with each trial,” she says.

Cali attributes many of her problems to the lack of knowledge about Lyme among local physicians. She contends that if doctors are not “Lyme literate” they may not interpret all the clinical and serology tests correctly.

Cali now waits for a decision on her application for a government disability allowance. Unable to hold down her regular job, she depends on her parents to help while doing small contract jobs. She found a doctor in Vancouver who has started her on what is called The Marshall Protocol—a mix of antibiotics and careful nutrition. She is hopeful that this more holistic approach will restore her health, but is aware that it may take several years.

“It took 12 long years?…?thousands of dollars in medication, false treatments, missed work without pay, dozen upon dozens of doctors, specialists and countless tests, needles and uncomfortable exams,” she says. “Many doctors would just look at me puzzled and say, ‘well, we know something is wrong, we just don’t know what.’”

Not all Lyme victims are adults. Fourteen-year-old John Pierce of Penticton was once an intelligent, active student, popular in school and passionate about karate. In September 2007 his mother, Cathy, saw him showing classic flu-like symptoms following a tick bite. The symptoms went away, but then the “flu” would return. Actual flu was around at the time and others had similar symptoms.

But there was more. “He started slurring his words and was forgetful,” says Cathy. “He began to struggle with schoolwork and later became confused and disoriented.”

When the doctor saw the classic bull’s-eye rash on John’s body, he dismissed it by stating some misunderstood details about the appearance of the rash and said it was probably an allergic reaction. He was adamant that it was not Lyme but did allow the prescription of antibiotics. Under the protocol set by the IDSA, doctors are told that a 28-day treatment is all that’s necessary to treat Lyme. This response has come under criticism from recent research but is still common.

Cathy and her husband, Vance, have become experts on Lyme as have all other sufferers of the disease in this story. It seems that victims must do their own research and then educate the doctors who are providing treatment. The Pierce’s battle has been ongoing and uphill for the past few years. John went from a healthy, active student to being confined to a wheelchair, suffering palsy, pain, weakness, continuous fatigue, slurred speech and confusion.

The Pierce’s found help with a doctor in Seattle who is Lyme literate and has started John on a treatment program. Seven months later he is still climbing the long hill to recovery. “He is about 50 per cent better,” Cathy says. “He’s out of the wheelchair most of the time, although he is very clumsy. His speech is still slurred but comprehensible now and he can stay focused. The facial palsy is gone and the hair loss and muscle atrophy have stopped.” Her voice conveys the frustration and anger that any parent would feel after seeing her child reduced to this while being told that Lyme disease is so rare it is hardly worth considering.

The Journey Ahead
Thanks to the Canadian Lyme Foundation, Hilary Wahlstrom was connected with Dr. Murakami in Hope, BC. After some extensive testing, Hilary started on the road to recovery. But it is a very long road.

“The Borrelia burgdorferi are very complex and adaptable bacteria,” she says. “The treatment requires prolonged antibiotics, which must be adjusted every few months to maximize the effect.”
This treatment is the contentious issue within the College of Physicians and Surgeons. Their opposition has caused Dr. Murakami to retire after many decades of service. Now Hilary must travel to Seattle for treatment and is deeply angry toward health-care professionals who still resist recognizing the consequences and treatment for lingering Lyme infections.

Back in his office, Jim Wilson displays a bar graph showing the incidence of Lyme disease in Europe, Canada and the US. The graph relates the infection rate per 100,000 of population. The Czech Republic shows 36, Belgium is 16, Finland 24, Germany 25 and the US is 7. Canada shares many of the same climate features as the European countries and much of the US, yet our infection rate hardly causes a blip at 0.115.

“Europe has confirmed 85,000 cases of Lyme each year,” Jim says. “It just does not make sense that we have such a low reported rate. Lyme is out there and it’s going to hit us hard unless we become aware and take measures to treat it or prevent it.”

Prevention, Information and Support

The best way to avoid the ravages of Lyme disease is to avoid the tick bite.

The Canadian Lyme Disease Foundation (www.canlyme.com) has links to many websites that provide good information. It also publishes a pamphlet outlining the symptoms of the disease.
The Canadian Centre for Occupational Health and Safety also has good advice including symptoms and prevention at www.ccohs.ca/oshanswers/ diseases/lyme.html.

The BC Centre for Disease Control at UBC has published a pamphlet, available online at www.bccdc.org. Dr. Muhammad Morshed, a scientist at the centre, has stated that he believes Lyme-infected ticks are very rare but agrees that there is a need for a thorough survey of the tick population. He says, “There are some very ill people out there. It may not be Lyme, but it’s something serious.”

Susan and Alex Wales run Panorama Veterinary Clinic in Lake Country and see some animals with ticks. “Most seem to be found in the area to the east of the Kelowna airport and in the commonage toward Vernon,” says Susan. “They are really hard to find on dogs, but if you are in the grass areas you do need to be aware and check for them.” Susan says that vets have inexpensive lab tests available to test for Lyme in animals—yet these tests don’t appear to be available for humans.

An excellent video documentary titled Under Our Skin is slated for screening at the Okanagan International Film Festival (April 22 to 26). The film provides powerful insight on the problem and might prove to be the tipping point for greater action against Lyme disease in the Okanagan.