For patients

Understanding misconceptions about Lyme disease

One of the biggest myths about Lyme disease is that recognising, diagnosing and treating it are relatively straightforward. Although this may be true for people who notice a tick or classic bullseye rash, for many others it’s much more complicated. Patients who are not easily diagnosed or cured often feel dismissed and are left struggling to find solutions on their own.

Although there is new information being discovered every day, there is still a lot we don’t know about Lyme and other tick-borne diseases. When these uncertainties are not acknowledged, patients are left dealing with a complicated disease in the context of a healthcare system that is not equipped to support them.

CanLyme encourages patients to learn everything they can about Lyme disease and other related infections, including the information and resources on this page and elsewhere on our website. 

Symptoms

Early symptoms may be mistaken for other health problems such as a flu or migraines, and symptoms such as fatigue, headaches and body aches can be easily overlooked. As Lyme infection progresses, patients may experience neurological or arthritic symptoms. Patients with Lyme disease can experience dozens of symptoms and those symptoms can change over time.

Virtually any part of the body can be impacted by tick-borne infections, including the brain and nervous system, heart, skin, joints, stomach and eyes. Infections such as Lyme can lead to a variety of mental health challenges caused by the infection, brain inflammation and also by challenges encountered when dealing with the disease. 

Patients with tick-borne infections will often experience symptoms that migrate to different parts of the body, and may have symptoms that are very different from other people with the disease. 

CanLyme has created a symptoms list, and there are several online symptom checklists (will link to resources below) that can be helpful in tracking progress and when communicating with your healthcare provider.

Diagnosis

Lyme disease is a clinical diagnosis. Although blood tests may be helpful in supporting the diagnosis, some people who have a negative test can still have Lyme disease. There are also patients that have symptoms of Lyme disease that may have other health problems.

Patients can also have more than one tick-borne infection or have other infections that become activated when patients are infected with the Lyme bacteria.

Lyme treatment is more effective when the disease is diagnosed and treated early. Because of this, it should be considered early and kept in mind when other inflammatory and autoimmune diseases such as chronic fatigue syndrome, fibromyalgia, and MS are being considered.

Treatment

Many doctors in Canada have been encouraged to follow treatment guidelines set out by the Infectious Diseases Association of America, or IDSA. Unfortunately, there are many patients who remain ill after treatment based on these guidelines. 

There are other guidelines available such as those developed by the International Lyme and Associated Diseases Society, or ILADS. ILADS provides guidance and support for healthcare providers based on emerging research and expertise that’s been gained by clinicians who have been treating these diseases for many years. 

Some healthcare providers who strongly suspect Lyme disease in their patients will initiate treatment to see if their patients improve with treatment.

It’s important to keep in mind that patients with Lyme and other infections may experience a worsening of symptoms when they start treatment. Although there are a variety of reasons this may happen, patients should be aware of a phenomenon called a Herxheimer reaction. 

Clinical pathways

In Canada, there are a variety of clinical pathways that patients may encounter when seeking diagnosis and treatment for Lyme disease. These include physicians, (family doctors and specialists), naturopathic doctors, and nurse practitioners. It’s challenging for medical and nursing schools to stay on top of emerging research relating to Lyme disease and other tick-borne illnesses. Some healthcare providers have furthered their knowledge by keeping up to date with research and taking courses or programs specific to tick-borne infections.

Ideally, healthcare providers will collaborate with each other regarding their patient’s care. Unfortunately, when clinicians disagree with a diagnosis or treatment option, there is little or no collaboration; often very sick patients are left to navigate their remaining options on their own.

When this happens, patients turn to support groups, friends, and the internet to find solutions. Finding support that works for you can be a lifeline for patients. It’s also important to recognise that solutions that work for one patient may not work for another, and that some options can be expensive or even risky.

Talking to your healthcare provider

It’s important to know that different healthcare providers can have different ideas about how to diagnose and treat Lyme disease. Unlike diseases such as cancer, where there is an abundance of research to guide care, there has been relatively little human research regarding different treatment options for Lyme and other tick-borne illnesses. Talking about this with your healthcare provider might be helpful when discussing treatment.

Open discussion about treatment options should also include the risks, benefit and cost of treatment options and the potential outcomes if no treatment is offered. There are no treatments that work for all patients all of the time; the best case scenario is one where patients and their healthcare providers work together to find solutions.

Documenting signs and symptoms can help you and your healthcare provider better understand your disease and treatments. If possible, take photos of bites and rashes, and use symptom checklists to keep track of changes.

Coping with Lyme

1. Find support. Whether it’s through your own social and family support system or through local support groups, seek out those who can help and support you. You might need to educate people around you – use all the resources you can find.
2. Try to get a good night’s sleep. A lot of our body’s healing occurs during restorative sleep. Learn everything you can about ways to improve your sleep cycle and find the ones that work best for you.
3. Nutrition. Some patients with Lyme disease try to avoid gluten and sugar, others find that a low histamine diet works best for them. When experimenting with different foods, make sure you’re still getting the nutrients that your body needs for healing. It’s also important to look after your gut health; tick-borne infections and their treatments can impact our microbiome.
4. Stay well hydrated. When patients feel unwell, they may not drink enough water. Staying well hydrated and clearing toxins from your system is especially important during treatment.

Resources

In addition to the CanLyme symptoms list, checklists for Lyme and other tick-borne infections have been developed by Lyme experts such as Dr. Burascano, Dr. Horowitz, and Dr. Fallon, et al.

Find out more about the limitations of Canadian two tiered testing in this Adverse Reaction Bulletin published by the Government of Canada. 

It may be helpful to refer your healthcare provider to this explanation of the controversies and challenges surrounding tick-borne infections, diagnosis, testing, treatment and clinical management of these diseases. This resource includes an extensive reference list for further exploration on these topics.

Learn more about approaches to testing, diagnosis and treatment, including some of the regulatory considerations in these videos by internal medicine physician Dr. Ralph Hawkins and infectious diseases physician Dr. Jack Lambert.

If your healthcare provider is interested in learning more about Lyme and other tick-borne infections, there are many options for online and in-person courses. ILADS Vector-borne Illness Fundamentals Course is a starting point in gaining a broader understanding of vector-borne diseases. ILADS also has a variety of online courses, international conferences, and offers clinician mentorship and support.

Invisible International is a non profit organization, supporting ongoing medical education with research based courses curated by top international researchers and clinicians. 

CanLyme provides Education Grants to support clinicians in deepening their understanding of vector-borne illnesses.