Diagnosis is often the most difficult part of the Lyme journey. Get informed and advocate for yourself.

Diagnosis

Lyme is the great imitator.

Many Lyme journeys involve testing to eliminate other possible diagnoses.

One of the hardest parts of many Lyme journeys is getting a timely diagnosis.

Not all Lyme disease cases present with a rash. Roughly 20-30% of infected individuals do not develop a rash, or it goes unnoticed. When it does appear, it is not always a bull's-eye & can appear as a solid red, expanding lesion.

Lyme disease blood tests typically detect antibodies, which usually take 2 to 6 weeks after a tick bite to show up. Testing too early (within the first few weeks) often results in a false negative (John Hopkins).

Some folks experience medical gaslighting even after a positive Lyme test, so please seek support & continue to advocate for yourself.

Symptoms vary greatly, making Lyme disease notoriously tricky to diagnose (it is often called the great imitator). Common symptoms include:

  • Fever & chills

  • Severe fatigue

  • Muscle & joint aches / pain

  • Swollen lymph nodes

  • Headache or stiff neck

  • Eye pain or visual floaters

  • Brain fog

  • Anxiety

Lyme can be misdiagnosed as fibromyalgia, MS, chronic fatigue syndrome, osteoarthritis, juvenile arthritis & more

❋ Symptoms

Unfortunately, most Lyme disease tests will not show a positive result until you have been infected for a period of time, making it difficult to treat unless the tick or rash is spotted.

“Serology antibody tests are generally more helpful for second and third stages of Lyme disease than first stage Lyme disease. Antibodies take weeks to develop, and if the initial presentation of Lyme disease is in the early stage those antibody tests may be falsely negative because the immune system has not yet had enough time to produce antibodies. If a physician is suspicious of Lyme disease but cannot make a diagnosis by the rash, then the antibody test in that first stage should be repeated 3 to 4 weeks later since a Lyme disease diagnosis can be missed with a false negative test in the first few weeks.

A negative antibody test does not necessarily rule out Lyme disease and should always be considered in the context of a full health history and clinical assessment.” - Johns Hopkins

Our advice for Nova Scotians, if you suspect Lyme disease but cannot access treatment because of a lack of a positive test, push your provider to retest for Lyme disease within a few months.

❋ Testing
Resources

Sites we Recommend

We keep our site focused on highlighting the topics to understand, then recommend expert resources to help you get more in depth!

CanLyme

Lyme Diagnosis

Johns Hopkins

Diagnosis of Lyme Disease

NS Gov

Lyme Disease in Nova Scotia

Lyme disease: Symptoms and treatment

Government of Canada