Around the world, some authorities recommend that Lyme disease is a diagnosis based on a patient’s symptoms, history, tick exposure risk and current presentation. Physicians call this clinical diagnosis.
Currently available laboratory tests are not definitive for a diagnosis of Lyme, which is why the clinical diagnosis should take precedence. It may take weeks for the bacteria to show in lab tests, and tests are not always accurate due the the immune-suppressing nature of the disease, which prevents patients’ immune systems from making antibodies to Lyme infection.
However, the guidelines in Australia state that a laboratory test is essential for Lyme diagnosis. But within the system, you will only be tested if you have travelled overseas. This is obviously problematic.
The presence of Erythema Migrans (EM) or bullseye rash is a “classic” indicator of Lyme disease, but the occurrence of EM rashes is highly variable.
Alternatively one may see a solid, spreading rash (resembling a bacterial infection/cellulitis or ‘spider bite’). Sometimes, there is no rash at all.
Another challenge for diagnosis is that Lyme symptoms may be similar to fibromyalgia, motor neurone disease, multiple sclerosis, lupus, chronic fatigue syndrome and even Alzheimers. Unsurprisingly, misdiagnosis is common.
Lyme Diagnosis in Australia
The Australian Government will not concede that Lyme Borreliosis exists in Australia, due to “insufficient evidence”. This is because their guidelines are based on outdated research. See also Australian Lyme.
The 2020 Clinical Pathway (see below) indicates that your doctor should only consider Lyme, and refer you to an infectious disease specialist to request pathological tests, if you have visited a Lyme endemic country.
The Department of Health published the Debilitating Symptom Complexes Attributed to Ticks (DSCATT) Clinical Pathway in 2020. Put simply, it is the official guide to diagnosis, referral and treatment for “Patients of all ages presenting at primary care with new onset (e.g. fever, rash) or unresolved debilitating symptoms, +/-history of tick bites”.
DSCATT is the most recent pseudonym for Lyme in Australia, but it is not an official diagnosis. Australian Lyme has been previously referred to as “Lyme-like illness”.
The Government’s stance on Lyme in Australia is virtually abandonment of this patient group.
The Lyme Association of Australia (LDAA) rejects the term Debilitating Symptom Complexes Attributed to Ticks (DSCATT) and the Clinical Pathway. They offer no assistance to new or long suffering Australian Lyme patients; and have made diagnosis and treatment (let alone prevention for the greater public) an even greater challenge.
How do I get a diagnosis?
Yes, this is a confusing topic and it may be difficult to find a physician who will work outside of the Department of Health’s Clinical Pathway to diagnose and treat Lyme. The doctors who do may be subject to audits by the Australian Health Practitioners Regulation Authority (AHPRA) and potentially, suspension of their registration.
GPs are not allowed to test for Lyme. A GP may refer you to an infectious disease expert if you have travelled outside Australia or if they suspect a diagnosis of a recognised tick-borne illness (e.g. Q Fever, Rickettsia, etc). If you can get a referral to an infectious diseases specialist, you may have to wait some time to get an appointment, and the specialist may tell you that ‘you can’t get Lyme in Australia’.
Diagnosis and treatment of Lyme is controversial in Australia.
Increasingly, Australian Lyme patients and those who suspect they have Lyme, are turning to consulting online with Lyme-literate practitioners in other countries, or visiting Lyme-specific clinics overseas.
Please contact us – we’ll help you with testing and finding a suitable practitioner.
You may wish to complete a Lyme Symptom Questionnaire to check for the probability that you have Lyme disease. (Questionnaires are not a replacement for a health professional’s advice, however).
In reality here in Australia, Lyme disease and other tick-borne infection tests may need to be ordered privately. Preferably, with the assistance of a Lyme-literate practitioner, or you can contact us for information. To avoid spending more than necessary (as testing is expensive), we recommend seeking guidance from a Lyme-literate practitioner (or us) to help you decide which pathogens to test for.
The videos below may help you to understand Lyme testing, private testing options in Australia, and which test/s you might choose.
Diagnosis and treatment in Australia is challenging, so many Lyme patients turn to naturopaths and other complementary therapists for assistance with chronic Lyme treatment. We recognise the potential for naturopaths to offer compassionate Lyme care and endorse Dr Nicola Ducharme’s online practitioner education course, Lyme-Ed for Practitioners for those who wish to assist Lyme patients. There is also a version of Lyme-Ed for Patients.
Copyright Lyme Disease Association of Australia