Lyme disease is an extremely comprehensive subject. This disease has been vastly overlooked by our government(s) and health authorities for decades. Anyone who is diagnosed with this debilitating illness quickly finds themselves submersed in the most controversial diseases of our time. From diagnostics and protocols, to the treatment of Lyme disease, our mainstream medical system is sadly ignorant. I was diagnosed with Lyme disease in January of 2019 after a decade of health issues. I was mortified when I began researching this illness, not unlike the countless others who were diagnosed before me. I was no longer proud of our Canadian medical system.
The revelation of what has been left to happen in our country with respect to this disease will haunt you. It is borderline criminal. Lyme disease will undoubtedly leave the blackest of marks in our country’s history. As a Canadian I feel we have had every opportunity to do better, to learn from the experiences of our neighbors in the US and the rest of the world. Sadly, we have not. Leaders in government and health have grossly failed Canadians.
This is a brief summary of some of my research. It has been compiled and documented to help others navigate a broken medical system. If I have been successful at getting you to research this disease yourself or getting you to question your doctor’s opinions, then I have succeeded at what I have set out to do.
This disease, in my last four years prior to diagnosis, slowly began robbing me of quality of life. So slow, in fact, that I questioned my own mind. If I had not received an accurate diagnosis I am sure by now I would be bedridden, all the while not being able to explain why a once healthy, passionate individual didn’t have enough energy to function day-to-day and didn’t want to do anything.
As defined by Dr. Richard Horowitz, a well-known US doctor who has treated thousands of Lyme patients over many decades, Lyme disease (and multiple associated tick-borne coinfections) is a multisystemic infectious disease that affects all areas of the body, including the brain and heart. It is caused by the bacterium Borrelia burgdorferi. There are actually multiple strains of Borrelia that can cause Lyme disease, including a few European strains, but Borrelia burgdorferi is the most well known. For those who have gone without diagnosis for a long time, he coined the term “MSIDS” Multiple Systemic Infectious Disease Syndrome. Other factors, such as parasitic or fungal infections, allergies, environmental toxicity, and a compromised immune function, make the illness unique to an individual, and consequently, diagnosis and treatment become a puzzle-solving process.
There are three stages of Lyme disease:
1. Stage 1 – Early localized
2. Stage 2 – Early disseminated
3. Stage 3 – Late disseminated
Some individuals will present in a later stage of the disease without having symptoms from an earlier stage.
Lyme disease symptoms can appear quickly or appear gradually over a long period of time. Symptoms can be extremely severe and life threatening, or they can start out as simply “nuisance” symptoms, i.e., digestive issues, metal taste in mouth, and/or iron deficiency anemia. Gradually over months and years, as the bacteria has been allowed to spread throughout your body, symptoms become unmanageable and debilitating. It is important to note that the sooner you treat this disease the better your chances are at a full recovery. This statement is especially true if you are treated with antibiotics soon after infection. After proper antibiotic treatment of a recent infection, you can annihilate the disease and continue to live your life symptom free.
The sad truth is that many people with a new infection have trusted the advice of their medical doctor, including their doctor’s treatment regimen, only to find out months or years later that they did not receive enough antibiotics to effectively kill the bacteria. Dr. Burrascano’s Advanced Topics in Lyme Disease: Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick-Borne Illnesses, linked here, has become the gold standard in setting precedent for treatment by Lyme-literate doctors for many years now.
The trusted, knowledgeable practitioners with respect to Lyme disease follow guidelines set out by ILADS (International Lyme and Associated Diseases Society). Unfortunately, in Canada, our doctors follow IDSA (Infectious Disease Society of America) guidelines and consequently, to our detriment, follow outdated, inaccurate information and protocols.
Here is a link to the Treatment Guidelines as set by ILADS. For comparison, I have also provided a link to the IDSA guidelines. One of the most common errors made in mainstream medicine with respect to treating a new infection is the belief that 21 days of antibiotics will kill the bacteria. ILADS recommendation, based on scientific research and case studies, is 4 – 6 weeks of antibiotic treatment.
Lyme disease mimics over 300 different illnesses. Click here for a comprehensive list of symptoms as reported by the Canadian Lyme Disease Foundation. Most people I speak to comment on how hard the disease is to diagnose and my research tells me it is mainly due to practitioners’ inexperience, that is, not “Lyme literate”. If you are educated with respect to this disease, it is not so hard to diagnose. In my case, I can completely understand why it wasn’t considered during those initial years; but certainly, in the latter four years, the collective symptom history should have been enough for Lyme to be considered. Unfortunately, I was completely uneducated in this area and I trusted my health-care professionals (which also included a naturopath who was not “Lyme literate”).
The problem in Canada, at present, is that our doctors and specialists are not educated in Lyme. It is not on their radar. In most cases if you attempt to talk with your doctor about Lyme disease (including infectious disease specialists), one is met with denial, negativity, and a closed mind. The vast majority who have attempted to rule out Lyme disease, are subjected to gaslighting — a form of psychological manipulation in which a person seeks to sow seeds of doubt in a targeted individual or in members of a targeted group, making them question their own memory, perception, and sanity. Using denial, misdirection, contradiction, and lying, gaslighting involves attempts to destabilize the victim and delegitimize the victim’s beliefs.
I believe that doctors and specialists have no interest in furthering their education or “opening their minds” to the scientific literature that exists because they are skewed by the opinions of the IDSA, whose guidelines most doctors are directed to follow by both Health Canada and their governing body, the College of Physicians and Surgeons.
Where Do You Start? Do You Suspect Lyme?
Dr. Richard Horowitz, MD (mentioned previously), developed a questionnaire that works like a scorecard, to help patients and practitioners differentiate Lyme from other diagnoses. I highly recommend you start here.
When you fill out the questionnaire keep in mind your complete health picture, not necessarily the symptoms you are experiencing today. Lyme is notorious for moving around the body. As the bacteria moves, symptoms (and pain) can come and go. Many “Lyme-literate” naturopathic doctors have their patients fill out this exact same questionnaire prior to making any recommendations regarding testing for Lyme.
Personal Recommendations regarding Diagnosis and Treatment of Lyme
1. Seek out a “Lyme-literate” naturopathic doctor (LLND).
I cannot emphasize this recommendation enough, as doctors and specialists in Canada have not been educated or trained to effectively diagnose and treat this disease. This viewpoint is applicable whether you or your loved one has had a recent infection or if you believe you have late disseminated Lyme disease. Even if you make it into the system as far as an “infectious disease” specialist, the majority of Lyme patients report they have wasted their valuable time; they are not taken seriously, nor are they treated with respect.
If you live outside of the province of BC (the only province in Canada, at present, where naturopathic doctors can prescribe antibiotics), you will more than likely need to make the trip to our beautiful province for your initial appointment. Followup appointments can be handled using various methods of modern technology; please check with your chosen health-care provider for more information. I have no experience to date with traveling to the US to be treated by a Lyme-literate medical doctor, but this is an option that some Canadian Lyme patients have chosen. If a Lyme patient’s symptoms are very severe and life threatening, there are also treatment facilities that exist south of our border and in other countries like Germany.
2. If you or a loved one recently removed a tick from your body, I recommend sending it to a private lab for testing. Contact geneticks.ca.
Spend the extra money for the Common Infections test, not just the Lyme disease. If your budget allows, consider selecting the Comprehensive test. You will receive the results within a short time span and this will leave adequate time to treat the infection should the result be positive.
3. I strongly recommend doing your own research. If you have been treated by your general practitioner or specialist you may wonder who is correct. I believe information is a powerful tool. Here are a few links to some informative reading materials.
• ILADS (International Lyme and Associated Diseases Society)
• Canadian Lyme Disease Foundation
• Dr. E. Murakami Centre for Lyme
• Global Lyme Alliance
There is an award-winning documentary on Lyme disease, Under our Skin. It is highly informative and eye-opening. In 2015, a followup documentary was released called Under our Skin 2 Emergence. (It can be found online for purchase and download, or on disk format at your local library.)
4. Consider joining a Lyme group in your municipality, if it exists. In Kamloops, BC, we have monthly meetings to support those people looking for advice, and, moreover, to simply offer a much needed “ear.” We have a local Facebook group named “Kamloops Lyme Disease Support Group.” There is also a national Facebook group with an extensive library. It is named “Lyme: OhOhCanada.” This is an excellent resource administered by some of the most amazing volunteers you will ever know. Their dedication to helping Canadians is remarkable. Their Facebook group is a forum for questions, advice, feedback, and support.
1. So, what’s the real problem? Why do our doctors and specialists in Canada not understand the severity and urgency surrounding Lyme disease?
In Canada, most medical doctors primarily follow protocols and guidelines set out by the IDSA (Infectious Disease Society of America). The experts regarding Lyme disease have been educated and trained by ILADS (International Lyme and Associated Diseases Society). These two opposing bodies have been disagreeing for decades. Our doctors are obligated to follow the rules and protocols set out by the IDSA, or risk having their licenses revoked. There are many other issues as well, which I will not address in my summary, but they can easily be pieced together through research on the Internet.
2. Do we live in an endemic area?
Certain areas, yes. At the time of this writing the Hamilton, Ontario, area, the lower mainland of British Columbia, and the East Coast are severely infested with ticks harbouring many dangerous diseases, including Lyme, at endemic levels. There are also many pockets of infection within nonendemic areas, such as along river valleys in the prairies and around the lakes in the BC Interior.
3. Why is the Health Canada Statistics page so terribly skewed (many, many cases have not been recorded)?
In order for a Lyme sufferer to be counted, he/she must have received a positive lab test through a Canadian lab. Many, many Canadians have had to seek testing from an American or German lab to screen for the many variants of diseases of which the Canadian test only screens for a handful. American and German lab tests also have a much higher sensitivity and specificity.
4. Is our testing in Canada reliable?
No. Canadian lab testing has proven inadequate. The product’s own monograph shows its inaccuracies. Read under “Limitations:” on page 4 and note points 1 and 3.
Unfortunately, your medical doctor will not tell you about testing limitations, which are clearly indicated on the current standard test’s own product monograph. Many people have received “false negatives,” only to see their health continue to deteriorate. Meanwhile our health system is spending countless dollars sending Lyme patients to specialist after specialist looking to diagnose each individual symptom.
5. If someone displays the classic “bull’s-eye” rash, have they been infected?
Yes. Absolutely. A bull’s-eye rash is always indicative of a Lyme infection.
6. What about rashes that do not resemble the classic “bull’s-eye”?
Please follow the link for a comprehensive overview of an “erythema migrans” skin rash. An erythema migrans rash is an outward sign of an actual Lyme disease infection in your skin.
Click on Images for examples of an “erythema migrans” skin rash.
Not all erythema migrans rashes resemble a bull’s-eye.
7. Did everyone who is diagnosed with Lyme disease develop a rash?
No. The vast majority will get no rash, and those who do get rashes report they are more generalized in appearance. Many, many Canadians infected with Lyme never saw a tick nor did they develop a rash.
8. Can Lyme disease be sexually transmitted?
At present, this topic is highly debatable, and much more research is necessary to accurately answer this question.
There is preliminary evidence, however, of Lyme spirochetes discovered in seminal and vaginal fluid, but there exists no research to date that proves Lyme can be transferred sexually.
9. Is there a better lab test than others at detecting Lyme disease?
Yes. In my opinion the German lab test from ArminLabs is the most comprehensive and reliable test at this time.
There are a number of reasons on which I base my opinion:
• The German test (EliSpot) looks for the actual Borrelia burgdorferi bacteria. The Canadian and nonprivate US testing looks for antibodies (ELISA and Western Blot). This is a real problem. Lyme disease is known to inhibit the immune system, and many people infected with Lyme are not producing antibodies.
• The German test looks for several strains of the bacteria, including coinfections. The Canadian test does not. Most people who have received a positive test from ArminLabs, quickly find out that they also have coinfections like Bartonella, Babesia, or Rickettsia (to name just a few). The coinfections are also a major contributor to many symptoms.
• Even if you can convince a Canadian doctor to requisition a Canadian lab test, the information is not nearly comprehensive enough to formulate an effective treatment plan.
• The German test will tell you whether you have an active infection, or whether you have had a past infection. This information is key to developing an effective treatment regimen.
• The Canadian lab test is a two-tiered test. You have to test positive on the ELISA to have your sample analyzed through the western blot. (52% of patients with chronic disease are negative by the ELISA but positive on the western blot.)
In Canada, if you test negative with the ELISA test, your doctor will simply deem the result as “negative”.
10. Can Lyme disease be transmitted from an infected mother to her baby in utero?
Yes. Also known as congenital Lyme, there is scientific evidence that proves Lyme can be transmitted from mother to child in utero.
Some Important Facts you should know to help you understand the severity and urgency of this disease.
1. There is only one Canadian medical doctor openly treating Lyme disease patients in Canada. His name is Dr. Ralph Hawkins and he resides in Calgary, AB. It has been reported that he is no longer accepting patients from out of province and his wait list is 2- to 3-years long. Recently, reports from prospective patients indicate he is not accepting any new patients at this time.
2. Dr. Vett Lloyd, a Mount Allison University biology professor, and Dr. Ralph Hawkins, MD, published a study in the fall of 2018. Their results estimated between 3% – 4% of Lyme disease cases are being documented in Canada. In my opinion this is absolutely deplorable.
3. Lyme disease has been dubbed “the first epidemic of climate change”, by Mary Beth Pfeiffer, author and Lyme researcher. According to her, scientists estimate that before long 80% of Canadians will live in areas colonized by the tick.
4. Canada did not learn from the experiences of many, many Americans. In the USA, individual states have had to enact laws to protect doctors for treating patients outside of IDSA guidelines.
5. The CDC estimates more than 300,000 people every year in the United States will become infected with Lyme disease. Migratory birds, one of the main reasons behind the spread of the disease, do not stop at border crossings, as reflected in many provinces according to Health Canada.
6. Doctors in Canada who were treating Lyme over a decade ago, were forced to close their practice by their own peers. An example of one such practitioner is Dr. Ernie Murakami. In my opinion, this man’s efforts were nothing short of heroic. He continues his advocacy efforts even today.
7. Only 30% of Canadians who have been diagnosed with Lyme disease report experiencing a rash, and only 9% develop the classic “bull’s-eye” rash.
Click here for common Lyme myths.
- Avoid tick-infested areas whenever possible, particularly in the spring and early summer. Ticks favor moist, shaded environments including leafy wooded areas and overgrown grassy habitats, including where woods/fields meet lawn, wooded areas, tall brush/grass, under leaves, under ground cover (plants) in yard, and around stone walls and woodpiles where mice and other small mammals live. Ticks can survive in very cold climates, and contrary to what you might think, it is possible to contract Lyme disease in the winter.
- Use a repellent. DEET will work; however, insect repellents are now available in Canada that contain icaridin (also called picaridin) and are deemed safe for use from 6 months of age. Icaridin is the more friendly alternative and is out performing DEET in recent studies. Spray exposed skin.
- Permethrin is an insecticide available in the United States. It can be purchased on the Internet. It can be used to treat clothing, footwear and outdoor gear.
- Mark’s No Fly Zone clothing utilizes permethrin-based technology. In most countries, their clothing is labeled as providing protection against ticks (just not Canada, at this time).
- Wear long pants and long-sleeved shirts. Tuck your pants into your socks to prevent ticks from getting inside your pants. Tuck your shirt into your pants.
- Check your clothes for ticks often. Ticks latch onto you from the grasses and will climb upwards until they find an area of exposed skin.
- Wear light coloured clothing to make it easier to spot ticks.
- Walk on pathways or trails and stay in the middle. Avoid low-lying brush or long grass.
- Do tick checks on your clothes and skin. Ticks like to migrate to moist areas.
- Dry clothing first prior to washing to kill any ticks. The Canadian Lyme Disease Foundation recommends 15 minutes on high heat for gas dryers and 20 minutes for electric dryers.
- Depending on your geographical location and the prevalence of ticks, you many wish to rethink the landscaping on your property. More information on this topic can be found on the Internet.