Welcome to my blog! This is a place of information and hope for fellow Canadians who are suffering from Lyme disease. I want to share with you the knowledge I have gained during my fight with this debilitating, frightening, and misunderstood illness. I hope you will be blessed.

Learn About Lyme

Lyme disease is an infection caused by the Borrelia burgdorferi bacteria, which is passed to humans from the bite of an infected tick, and possibly black flies and mosquitoes.  It is a multi-system, multi-symptom infection, and is called the “great imitator” as it can mimic many other illnesses.

This bacterium is called a spirochete (pronounced spy-ro-keet) because it is spiral-shaped, like a corkscrew.  It is very stealthy because it can penetrate into tissues and organs and hide there, and it can change forms in order to evade antibiotics.

Lyme spirochete
There are three stages of Lyme disease:
1) acute or early Lyme disease
2) early disseminated Lyme disease
3) late or chronic Lyme disease

Acute/Early Lyme

Most doctors will agree on the acute/early stage, as it is easy to recognize:  a tick bite is followed by a rash called erythema migrans which is often (but not always) in the form of a bulls-eye rash.  A person might have flu-like symptoms as well.  Antibiotics given promptly at this stage will, in most cases, eradicate the infection.

But it's not as simple as that in many cases!  There are 3 problems that patients encounter which prevent adequate treatment, and allow the bacteria to spread, causing a debilitating and sometimes life-threatening illness.

Problem #1 - Fewer than 50% of infected people recall being bitten by a tick, and fewer than 50% present with the typical bulls-eye rash or any rash at all.  Therefore, the infection disseminates (spreads) to other parts of the body and can cause very serious symptoms down the road, even if the person is asymptomatic to begin with.  At any point in time, the illness can progress to early disseminated or late stage Lyme disease, and many doctors just don't know enough about the symptoms of the disseminated infection to diagnose it correctly.  This was the case for me.
Bulls-eye rash
Problem #2 - Testing for Lyme disease in Canada is unreliable.  Canada uses a two-tiered system for Lyme testing.  It begins with the ELISA test, and only if that is positive will a Western Blot test be done to confirm the diagnosis.  It has been widely reported that the ELISA test is inaccurate and produces a great percentage of false negatives.  Also, the Western Blots used in Canada and regular U.S. labs omit certain significant "bands" (namely bands 31 and 34) which point to antibodies specific to Borrelia.  Click here for more information on Lyme lab testing.

Problem #3 - The antibiotics need to be given for a long enough duration at the acute/early stage, or the infection might spread.  Physicians in Canada might give you a 3 week prescription for doxycycline if you develop the bulls-eye rash.  But some doctors might just tell you to go home and not worry about the tick bite as long as symptoms are not present.  THIS IS A COSTLY MISTAKE!  A Lyme-literate medical doctor (LLMD) will prescribe 6 weeks of antibiotics at this early stage to ensure that the bacteria are eradicated.  Lyme-literate medical doctors will even treat a bite in the absence of rash/symptoms with a course of antibiotics.  They are aware that the risk of not treating is just too great.
Lyme-literate medical doctors will send blood work to a specialized Lyme lab in California called IGeneX.  This lab provides a very detailed report, including ALL significant "bands", and can greatly help your LLMD in your diagnosis. 

If you are having Lyme testing done at IGeneX and would like to know how to interpret your Western blot, click here.

Unreliable lab testing was also an issue for me.  My Ontario ELISA was negative, but my IGeneX Western Blot was positive.

Lyme in the Later Stages

In the later stages, many cases of Lyme disease go undiagnosed or misdiagnosed as other illnesses such as fibromyalgia, chronic fatigue syndrome, multiple sclerosis, various autoimmune diseases, and even some mental health illnesses such as anxiety or panic disorder.  Sometimes, physicians just cannot offer an explanation for the symptoms the patient is experiencing because they have not been trained to identify Lyme disease in its later stages and are completely unfamiliar with its many symptoms.

The symptoms can differ from person to person.  You could have just a few symptoms, or many symptoms.  Sometimes a person's symptoms change, or come and go.  Pain can often migrate to different parts of the body.  There are 76 possible symptoms, depending on where the body is being affected by the bacteria.  Symptoms can include things like extreme fatigue, flu-like symptoms, headaches, stiff neck, joint pain, joint swelling, neurological problems (muscle twitching, tremors, tingling, numbness), insomnia, anxiety, panic attacks, difficulty concentrating, and memory problems. 

For a complete list of possible symptoms, click here 

The longer you have had the illness, the more difficult it is to eradicate.  Therefore, early diagnosis and treatment is important.

Lyme disease is further complicated by co-infections that are often passed along by the tick.  These infections include babesia, bartonella, ehrlichia, among others.  They all have their own symptoms and require specific antibiotics.

Unfortunately, there is not yet one accepted “standard of care” for Lyme disease in the later stages.  There are 2 very different opinions regarding treatment.  One group, which includes the Infectious Diseases Society of America (IDSA) and the Centers for Disease Control (CDC), believes that treatment should be for 2-4 weeks and any leftover symptoms are called “post-Lyme syndrome”.  Despite much clinical evidence to the contrary, and despite emerging studies, they cling to the idea that the Borrelia burdorferi spirochete does not persist in the body after a short course of antibiotics.  They do not believe that "chronic" Lyme disease exists.

The other group, which includes the International Lyme and Associated Diseases Society (ILADS), believes it is important to find which treatment works best for each individual and then continue treatment until the patient has no or minimal symptoms for two months.  This may require long-term antibiotics.  A comparison of the 2 views in chart form can be found here.

The Canadian medical system adheres to the standards set out by the IDSA and CDC.  From my research and personal experience, these standards are flawed and completely inadequate.

It is very important to realize that Lyme disease is above all a clinical diagnosis, based on symptoms, history, and risk of exposure, with blood work playing a supporting role.  I have been told by an LLMD, that even very sick patients can still have a negative Western Blot.  The testing is not foolproof, and more research into testing methods needs to be done.

To recap, there are many roadblocks to getting a diagnosis and treatment for Lyme disease in Canada:
- The unreliable testing methods
- The lack of knowledge among family doctors and even specialists about the symptoms of this disease.  It is not uncommon for a person to be sent from specialist to specialist without any diagnosis or with a diagnosis of fibromyalgia, chronic fatigue syndrome, MS, or other autoimmune diseases.  Meanwhile, treatment is delayed and the infection spreads further.
- The conservative approach to the use of antibiotics (2-4 weeks).  Even if you are fortunate enough to have a positive ELISA and Western Blot from the Public Health Lab, your course of treatment will be short-term, despite persistent symptoms.
- The mistrust of U.S. “for-profit” labs
- The understandable fear that physicians have of being reprimanded or losing their licences if they treat Lyme Disease with long-term antibiotics, when that is not the standard protocol in Canada.

In the U.S., there are now a few states that have passed laws protecting physicians from any repercussions for treating Lyme patients as they see fit.  This is certainly hopeful.  Progress is being made, though very slowly.

(Video begins at the 13 second mark.)

Lyme Chick