Diagnosing Lyme & Other Tick-borne Diseases
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​Lyme disease is a challenge to diagnose and can be even tougher to treat if not caught in the early stages so it is imperative that you get treatment quickly.  Lyme disease testing is not an exact science: patients often receive negative results even when the disease is actually present. 

If you suspect you've been infected with Lyme Disease, or another tick-borne disease, don't wait for symptoms to get worse before going to your doctor.  Lyme Disease is most treatable in the early stages.  As time passes, both treatment and diagnosis become more difficult.  Symptoms worsen during each stage of infection, ranging from flu-like symptoms to neurological illnesses, including paralysis.  Tick-borne diseases might also trigger autoimmune responses in the body.

It is important to keep in mind that even with early treatment, a cure is not guaranteed.  Scientific studies are showing that persister cells of the bacteria can still exist despite months or even years of treatment resulting in the potential for symptom relapse.​
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Why Are Tick-borne Diseases Difficult to Diagnose

  • In a nutshell, the IDSA (Infectious Disease Society of America) whose guidelines are followed by the CDC both in the U.S. and Canada, feel that their current diagnostics for lyme are gold standard.  The testing protocol is first the screening test called the Elisa (enzyme-linked immunosorbent assay).  If the Elisa is positive then the Western Blot is done.  However, the sensitivity of the Elisa is poor and the rates of false negatives are high.  If the Elisa comes back negative, then the more specific test – the Western Blot is NOT done.
  • ​Lyme symptoms are similar to other illnesses, so misdiagnosis is common.
  • Many Canadian doctors are unfamiliar with tick-borne infections.
  • Only a handful of blood tests effectively detect Lyme bacteria and other tick-borne infections, so it is often missed.
  • ​There are many strains of any one tick-borne illness, with more being found as time goes on.
  • ​​Current Canadian Lyme testing is designed for surveillance purposes only and was never intended as a diagnostic tool and is only supportive to a clinical diagnosis. 
  • The Canadian two-tiered test lacks sensitivity (especially in early disease), and therefore not everyone with Lyme bacterium will test positive.  It is written directly on the package for the Elisa test that "Negative results (either first or second step) should not be used to exclude Lyme disease".   Because of this, you need a doctor well versed in tick-borne diseases who will keep looking despite a negative result.
  • False Negative Elisa results are common especially in the early stages of lyme.  It takes time for antibodies to be developed.  In addition, in later stages, the bacteria has a way of avoiding the immune system, thus presenting more challenges for accurate detection.  
  • Lyme is known for antigenic shifting, so antibody testing isn’t always effective.
  • The IDSA / CDC Western Blot test - Antibody titers also appear to decline over time; thus while the Western Blot may remain positive for months, it may not always be sensitive enough to detect chronic infection with the Lyme spirochete. For “epidemiological purposes” the CDC eliminated from the Western Blot analysis, the reading of bands 31 and 34. These bands are so specific to Borrelia Burgdorferi that they were chosen for vaccine development.  A positive 31 or 34 band is highly indicative of Borrelia Burgdorferi exposure. Yet these bands are not reported in commercial Lyme tests.
  • There are 5 subspecies of Borrelia Burgdorferi, over 100 strains in the USA, and 300 strains worldwide. This diversity is thought to contribute to the antigenic variability of the spirochete and its ability to evade the immune system and antibiotic therapy, leading to chronic infection.  The Western Blot test does not look for other strains of Borrelia, only Borrelia Burgdorferi.
  • Relapsing is not uncommon as studies also indicate that borrelia can change forms, go dormant and create biofilm communities which can evade the antibiotics.
  • Testing for co-infections is not typically taken into consideration.  Co-infections can increase the severity of symptoms and treatment challenges. ​​​

Diagnosis in Manitoba

In Manitoba there are three tick-borne illnesses that are reportable with Manitoba Health:  Lyme disease, Anaplasmosis and Babesiosis.  Emerging infections include Borrelia Miyamotoi, Borrelia Mayonii and Powassan Virus.  Borrelia Miyamotoi does not present with an EM rash.  Powassan Virus can be transmitted within 15 minutes of attachment.  Please note that ticks can transmit other infections and diseases that are not reportable, including parasites.   

If you suspect you have a tick-borne disease, please seek medical help immediately because the best chance of regaining your health is in the early stages.  Please find some helpful links below including the Physicians letter to take in to your doctor.
​Manitoba Health information on Lyme disease 
Manitoba Health information on Anaplasmosis
Manitoba Health information on Babesiosis​​

Bitten - What Next

Navigating Your Way

New to Lyme and this journey?  Check out our Navigating Your Way document for additional tips as you begin your journey back to health.

For a list of more helpful hand outs, visit our Resources page.​

What To Take With You To Your Doctor's Appointment

Not all doctors are knowledgeable on tick-borne diseases, so please take the following documents from Manitoba Health to your doctor in case he/she is not up-to-date. 
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Print out the Physician Letter found on the page below, and take it in to your doctor.   To find it, you can go to the resources page of the Manitoba Health website, and under "For Health Care Providers", you can usually find the Physicians update at the top of that section.
Find the most recent physicians letter  Scroll down to the section "For Health Care Providers"

Treatment

On the journey to restoring good health, treatment approaches can range from a standard one size fits all antibiotic protocol to a more personalized antibiotic protocol approach, as well as natural /alternative therapies.  Personalized medicine is the preferred approach as it takes into consideration the specific tick-borne diseases involved as well as the individual’s immune system.  Antibiotic protocols are the basis under the mainstream approach, while natural treatments include but are not limited to herbals, IV therapies and immune support.

Introducing The Tick Collaborative Care Service

Manitoba is extremely fortunate to have the TICC Service, sometimes referred to as the Lyme Clinic in Winnipeg, which was established in 2020.  The purpose of the service is to address the challenges of diagnosing and treating lyme and other tick-borne diseases, as well as to enhance the education and collaboration between primary care physicians and specialists. 
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This service is available to Manitoba residents only, and a referral from one’s primary care physician is required.  For more information on the Service and the referral process, please click here. Tick Collaborative Care Service | Winnipeg Regional Health Authority (wrha.mb.ca)

Natural / Alternative Therapies

Manitoba Lyme recommends that if a person decides to go the natural / alternative treatment route, it is best to do so under the guidance of a licensed Naturopathic Doctor and in collaboration with their primary care physician and / or specialists.  More information on Naturopathic clinics can be found in our “Navigating Your Way” document by clicking here.

​For additional information on diagnosis and treatment, please email us at manitobalyme@gmail.com ​