Imagine you are a 16-year-old girl confined to a wheelchair without any short-term memory. Now imagine that you are 3000 miles away from your family, your friends, and your home. You are also in a foreign country. Imagine that all of these unpleasant factors are because you are afflicted with a misunderstood and controversial disease. This is not an uncommon story of a patient with Lyme disease from Canada. Lyme disease is “an acute inflammatory disease that is caused by a [bacteria] transmitted by ticks- called also Lyme.” (Merriam-Webster Online Dictionary, 2009) Canadians should become more aware of Lyme disease because Lyme is an epidemic, preventative measures can be taken, and Lyme is consistently misdiagnosed as other diseases. Aldous Huxley once said, “There are things known and there are things unknown, and in between, there are doors of perception.” (Weintraub, 2008, 24) With the debate about Lyme raging in Canada, it is important to note what is known and what is unknown about this devastating disease, and perhaps more importantly, what is being perceived by the public and by the medical community.
The number of new diagnosed cases of Lyme disease outnumbers the new cases of AIDS. (Buchanon, 2009) This is a staggering statistic considering the attention and concern devoted to the AIDS epidemic. Citizens of Canada should also be very concerned about the fact that Lyme disease, which is seemingly unknown, is also an epidemic.
Doctors and labs report more than 23 000 cases falling within the Center for Disease Control’s circumscribed definition for Lyme disease each year- a number the CDC estimates is 10 percent of the total such cases in the United States. At more than 200 000 new cases a year, Lyme [has] become one of the fastest spreading infectious diseases in the United States. But how many… patients fell outside the umbrella? (Weintraub, 2008)
The numbers of cases of Lyme within the United States, our neighbouring country to the south, are enough to suggest a serious problem. It is also important to note that Canada uses the United States’ Center for Disease Control’s guidelines. When Lyme was first acknowledged in the 1970s, it made its appearances in what were called “Lymezones” across the continent. Soon, however, there were “…doctors who saw Lyme [disease] everywhere…” (Weintraub. 2008) The disease does not discriminate as to where it travels. Wherever there are possible carriers of the bacteria-infected ticks, such as deer or mice, there is a possibility of contracting the disease. Perhaps the most pertinent reason Canadians should become more aware that Lyme disease is an epidemic is that the number of cases of the disease are expected to increase over time. Dr. Kevin Forward of Capital Health in Halifax stated that, “[Capital Health] expect[s] as our climate continues to warm and other factors come into play, we’re going to have an extension of the Lyme problem.” (CBC, 2006) If Dr. Forward is correct, and Lyme disease does become more prevalent, Canadians should start to inform themselves of ways in which to stop the spread of this disease.
Going for a walk in bear country is a dangerous activity. There is an obvious and serious threat to your life if you do not take the proper precautions such as carrying a noisemaker and not walking alone. (Dieno, 2009) Going for a walk where there is a possibility ticks are present is an equally dangerous and life-threatening activity. Being aware of the many simple preventative measures one can take in order to be protected against ticks is an effective way to help stop the spread of Lyme disease. Simply covering arms and legs while walking through the woods or areas with grass is a way to keep ticks far enough away from skin so that the ticks cannot bite. Using an insect repellent which contains DEET on whatever skin is left exposed, and also on clothing is a further deterrent to ticks. When returning home, after being exposed to areas that ticks may inhabit, it is important to thoroughly check the bodies of pets and people who have been in these areas. (CBC, 2006) Removing the ticks before they bite could save your health. It is important to be knowledgeable of these defensive measures because, unlike a bear, a tick is a physically tiny threat, but just as deadly.
Many illnesses are perceptible. Their symptoms are clear and treatment is definite. Symptoms of strep throat include a fever and swollen tonsils. (The Nemours Foundation, 2009) Physicians, when presented with these symptoms, can offer a treatment plan based on them, and their previous knowledge of the infection. Lyme, however, is constantly misdiagnosed as many other diseases. The reason this misdiagnosis occurs is because Lyme symptoms are indistinguishable from those of other known diseases. Lyme is alleged to be misdiagnosed as Alzheimer’s disease. A symptom of Lyme is memory loss. (CanLyme, 2009) Dr. Alan MacDonald, a pathologist from New York, is currently researching what he calls “a new biology for Lyme disease” in which he is using “DNA probes to detect [bacteria] DNA… in tissue sections from Alzheimer autopsy tissues.” (MacDonald, 2006) Dr. MacDonald believes that “some Alzheimer’s might be… a late manifestation of the bacterial infection in the brain [caused by Lyme.” (MacDonald, 2006) Lyme disease is also often misdiagnosed as chronic fatigue syndrome. Chronic fatigue syndrome is a “severe, incapacitating fatigue that isn’t improved by bed rest…” (CDC, 2006) Nicole Bottles, a young patient with Lyme, was first diagnosed with chronic fatigue syndrome. She describes that the way she feels is very similar to that of a patient of chronic fatigue syndrome. She says,
I'm now like in a permanent in between-sleep-and-awake state. I can't wake up in the morning… But it doesn't feel so cut and dry anymore. Being asleep. Being awake. Dreaming. I think that I've hit on the other stage of 'wakefulness'. It's waking up and still being asleep, like that feeling of being trapped in a nightmare and not being able to wake up, [except] it’s the opposite. (Bottles, 2009)
A third disease Canadians should be aware of, which might be Lyme but is commonly misdiagnosed, is autism. “Late in the progression of [Lyme] disease, neurological, cognitive, and psychiatric symptoms predominate; overlapping symptoms of autism such as food avoidance, facial recognition problems, sleep disorders…” (CanLyme, 2009) The one common thread that leads to the proper diagnosis of Lyme is that most patients have a number of their systems affected, such as their brain, their central nervous system, and many more. If left untreated or treated insufficiently, Lyme symptoms will continue to persist over a person’s lifetime. “Lyme diagnosis is never ‘black and white’ but rather, ‘shades of grey’.” (Weintraub, 2008) Canadians must be sure that they are knowledgeable of how commonly Lyme is misdiagnosed and the diseases it is often diagnosed as instead.
If Lyme disease is an epidemic, if there are simple ways in which to prevent the disease, and if Lyme is misdiagnosed so often, hiding, as other diseases, who is responsible for the treatment, prevention, and diagnosis? The biggest barrier in the debate about Lyme is the Center for Disease Control’s guidelines for the treatment of Lyme. These guidelines are not broad enough to cover the wide range of symptoms and co-infections caused by the disease. Doctors who defer from these guidelines in order to treat patients with Lyme are often persecuted and have had even had their licenses taken away because of their “heretical” and differing views. (Weintraub, 2008) In 2006, the Public Health Agency acknowledged that Lyme was a bigger problem than they had originally thought. They claimed that they “[were] reworking [their] guidelines on the diagnosis and treatment of Lyme disease”, yet nothing seems to have changed in the last 3 years. (CBC, 2006) Pamela Weintraub says, “Perhaps we enjoy living recklessly. Perhaps we feel invulnerable and thus immune to dangers and risks. We don’t like to ponder bad news before it happens. (Weintraub, 2008, 353) Now is the time to ponder and to become aware of the dangers of Lyme and the misconceptions about Lyme in order to take control of the disease. “The great tragedy of science is the slaying of a beautiful hypothesis with an ugly fact.” (Weintraub, 2008, 340) The fact is that Lyme is, and will become even more of a crisis in Canada. Exposing the truths about Lyme disease is the preeminent way to fight back against this debilitating disease.