Is there Lyme Disease in Canada: the debate.

With rising awareness about Lyme Disease, Canadian patients with positive Lyme tests are left wondering why their family doctor is not taking this diagnosis seriously. Comments like “I don’t believe in Lyme,” “it’s all in your head,” “Lyme can’t be causing your symptoms,” often are spoken by doctors to sufferers, who then feel humiliated, devalued, and alone. What does a Lyme patient do when they are bed ridden and can’t work, but their doctor doesn’t believe them? What if the pain caused by Lyme Disease is overwhelming and medication doesn’t work, or you can’t even get a prescription or treatment? What if there are neurological symptoms caused by the Lyme infection, but a specialist won’t see you? Why isn’t Lyme Disease taken seriously by the doctors and specialists that are supposed to help? Why is there so much conflicting information between doctors and patients about Lyme Disease?

The most common way to contract Lyme Disease is by a tick bite from a black legged tick that carries the Borrelia bacteria. It is now known that ticks are spreading rapidly within Canada to places that they weren’t before, due to a rise in temperatures from climate change. Ticks are also moving with the pattern of migratory birds, and on the backs of deer and white footed mice. This has allowed the transmission of Lyme to happen in places where there weren’t ticks in the past. The movement of the ticks is happening faster than studies can keep up with them, (actually 35-55 km a year), and this has left many doctors to turn a blind eye, even when all signs point to Lyme disease. 

What is the debate about diagnosis? Some say the Canadian test is very inaccurate and unable to detect the bacteria infection in late stages, leaving patients with false negatives when they are indeed sick. These patients often get testing done outside Canada, and when they present their positive results to their doctors are told “you were scammed” or “it’s a false positive” and are still denied treatment. On the other side, doctors claim the Canadian test is too sensitive, and that it often brings false positives leading to an overdiagnosis. This can lead positive patients, with symptoms, still unable to access treatment. It seems that patients just can’t win this political game.

What is the debate about getting Lyme? Many doctors tell patients that they don’t live in an area with ticks, ignoring any travel they have had, or that the ticks are on the move and may be in their area for the first time. Or patients are told that it was impossible to contract Lyme in their back yard, even though it has been documented that infected ticks are in urban areas, as well as rural areas. Some patients with the tell tale bulls eye rash were told it was a spider bite or an allergy to the tick bite. Many doctors aren’t aware that the ticks are moving, and aren’t up to date on the studies showing that Lyme is moving. In 2009 there was only 144 cases of Lyme in Canada, and in 2017, 2025 cases were reported. Many believe that thousands are going undiagnosed or at least unrecognized by the Canadian health care system. In any case, the numbers are rising at an alarming rate, and Lyme is making its mark on Canadians.

With many years of debate, Elizabeth May pushed forward The Lyme Disease Act bill C-422 in 2014. This bill called for “the establishment of guidelines regarding the prevention, identification, treatment and management of Lyme disease, including a recommended national standard of care that reflects current best practices for the treatment of Lyme disease.” The result of this bill was a conference to develop a federal framework on Lyme disease that started June 1, 2015. This conference gathered information from doctors, patients, families and concerned citizens, and gathered information for the need to change. The issues were not resolved, and the debate continues since this conference.

“This victory belongs to all Canadians coping with Lyme disease and their loved ones. This bill never would have been passed into law without their advocacy and willingness to tell their stories.” -Elizabeth May

Although it is highly recognized that Canadian testing is extremely inaccurate and needs change, the Canadian system refuses to acknowledge testing that is done outside Canada. Patients who realize that they are falling through the cracks in the system reach out to labs in the USA or Germany to find answers. The debate here lies in the fact that the patient pays for these tests. Some doctors in Canada claim they are being scammed and that these labs have a “stake” in positive results. This is in fact, not true. These labs are strictly regulated, and more accurate then what is currently offered in Canada. It is time Canada accepted that what is being offered is not up to par, and many people are suffering and dying as a result. Many other illnesses have poor testing or an absence of testing, and yet diagnoses still happens while we wait for science to catch up, and Lyme should be treated as thus.

What has this meant for Lyme Disease in the long term? Now, in Canada, many doctors will ignore a patients’ plight if they are querying whether Lyme could be causing their symptoms. Sometimes doctors even become belligerent when asked, or when a patient approaches them with a positive test from outside Canada. This behaviour is against the oath of “first do no harm.” No matter what a doctor believes or knows, the person in front of them is a human being, in need of help, and it is the doctors’ job to find the solution to their health problem. Often the label of “stress” or “mental illness” leaves the patient in tears at the end of an appointment. Not only does this down grade their own suffering, but also puts less emphasis on the seriousness of mental health. In this information age, doctors should able to say, “I don’t know,” when they don’t know.

Why haven’t guidelines changed? In 2006 the IDSA (Infectious Disease Society of America) came out with guidelines for the treatment of Lyme Disease. They were forced to assess these guidelines, as doctors treating Lyme, and patients suffering said they were missing information. The IDSA refused to change their guidelines. Why is this important in Canada? The USA is a huge country, and smaller countries copy many of their policies out of lack of funds, and trust in their judgement. This has left a political storm in Canada, as many doctors claim these guidelines still stand, and suffering patients claim they are being ignored and still suffering from an infection that no one will treat, and they can’t even talk about.

Is this a violation of the patients’ human rights? There is an overwhelming body of evidence on the existence of acute, chronic, systemic and persistent Lyme disease, and yet nothing has changed in terms of treatment and recognition. A team of specialists petitioned the World Health Organization (WHO) to recognize Lyme so that we can work towards change. The WHO is the international leading body on health, and they determined that by not recognizing and treating Lyme Disease, patients’ rights were being violated.

“The many egregious practices related to the 2006 IDSA Lyme guidelines have perpetrated fourteen human rights violations.” –Jenna Luché- Thayer

Human rights violations of patients and their human rights defenders:

• Right to highest attainable standard of health
• Right to freedom from torture and cruel, inhuman and degrading treatment.
• Right to life.
• Right to liberty and security of person.
• Right to privacy and confidentiality.
• Right to information.
• Right to bodily integrity.
• Right to participation in public policy.
• Right to no discrimination and equality.
• Right to decent working conditions.
• Right to freedom of association.
• Right to due process.
• Right to a remedy.

In 2018 The World Health Organization (WHO) listened to the petition, and set ICD codes (International Statistical Classification of Diseases and Related Health Problems) for Lyme Disease. What does this mean for patients? Even if the country the patient resides in does not yet have the codes listed below in their medical system, this information can be given to the treating doctor to help them recognize that Lyme disease is real and is recognized internationally. The WHO is in place to direct and coordinate international health within the United Nations system, and this recognition of Lyme Disease means every Lyme patient legally has a right to treatment, testing and security as a patient.

The codes listed below can be taken to doctors to help patients in their cause, and educate doctors where their governing body may not be set up yet to do so.

ICD11 Codes:
1C1G Lyme borreliosis
1C1G.0 Early cutaneous Lyme borreliosis
1C1G.1 Disseminated Lyme borreliosis
1C1G.10 Lyme Neuroborreliosis
1C1G.11 Lyme carditis
1C1G.12 Ophthalmic Lyme borreliosis
1C1G.13 Lyme arthritis
1C1G.14 Late Cutaneous Lyme borreliosis
1C1G.1Y other specified disseminated Lyme borreliosis
1C1G.1Z Disseminated Lyme borreliosis, unspecified
1C1G.2 Congenital Lyme borreliosis
1C1GY Other Specified Lyme borreliosis
6D85.Y Dementia due to other specified diseases classified elsewhere; dementia due to Lyme disease
9C20.1 Infectious panuveitis; Infectious panuveitis in Lyme
9B66.1 Infectious intermediate Choroiditis; infectious intermediate uveitis in Lyme disease
8A45.0Y Other specified white matter disorders due to infections; Central Nervous System demyelination due to Lyme borreliosis

What do Lyme Disease ICD codes mean for Canada? At the time of writing this article, Canada does not have medical codes to claim chronic Lyme, but only has codes to claim acute Lyme. Acute Lyme is described as starting directly after a tick bite when there is a bull’s eye rash present (although this rash is only in place for 10% of cases) and the patient has flu-like symptoms. Since not everyone is aware of a tick bite, or notices symptoms right away, many people go to their doctors looking for answers after months or years of illness. Some don’t even remember a tick bite but know their symptoms match those who are ill with Lyme. Doctors in Canada are unable to make a claim for a visit for Chronic Lyme. Until Canada catches up the WHOs standards, patients will be left to have to seek help on their own. 

Are doctors at fault? Often, doctors have had little training in diagnosis and treatment of Lyme and are following advice of their peers. In their busy practices, they don’t have time to do the research that patients, whose whole lives have turned into a search for an answer, do. Doctors who are aware that Lyme is an issue in Canada have their hands tied. There have been reports of doctors losing their licenses if they treat and test for Lyme more than is deemed acceptable (which is a judgement call by their peers). The change needs to happen at a higher level, Health Canada needs to change the guidelines so that it is very clear that Lyme exists, Lyme is everywhere, and we are all at risk of being infected. The only time a doctor should truly check their behaviour is when they berate or shame their patient just for asking about Lyme. This query should be treated like a legitimate question and concern about the patient’s health. 

What does this mean for patients? After their first visit with their doctor to discuss Lyme diagnosis and testing, patients often know if their doctor is on board with the conversation. If they aren’t, the patient is left to seek help elsewhere. Ananta Health specializes in the treatment of Chronic Lyme Disease, based on the personal experience of Dr. Rebecca Risk, who was bed ridden with Lyme Disease in 2007. Having treated herself, and thousands of patients for this illness, she has had great success helping patients get their lives back.