Australian Lyme?

Evidence of Lyme in Australia | Current health policy | How big is the problem? | Diagnostic protocols and testing | Lack of education

Lyme disease, and whether or not it exists in Australia, is highly controversial.

An increasing number of Australians are becoming chronically ill after a tick bite within this country. But the current stance of the Australian Government is that classical Lyme disease (and its common co-infections) cannot be contracted in Australia.

The LDAA believes that the combination of compatible clinical cases (in patients without travel overseas), plausible vectors and reservoirs, discovery of other Borrelia‑like organisms, and acknowledged research and diagnostic gaps means that local transmission of some Borrelia (or closely related spirochaetes) cannot be ruled out and remains a scientifically open question rather than a closed impossibility. Yet, in the official Government Response to the 2025 Senate Inquiry, the Government indicated that it will not be further exploring borrelia as a cause for “DSCATT” in Australia.

Relevant research has not included an epidemiological review or involved exhaustive, nationwide, long-term sampling of all tick species, host animals, and habitats, so it is not reasonable to definitively rule out Lyme Borrelia or other Lyme-like Borrelia strains.

Evidence of Lyme in Australia

• Compilation of evidence, 2019. Black Dot Project.
  
• Evidence of Lyme disease in Australia. Article from the Sydney Morning Herald, 1989.
  
• Lyme Borreliosis: An Australian Perspective. (Abstract). This is the 1995 thesis of Dr Michelle Wills.
  
• Analysis of Lyme Borreliosis: An Australian Perspective. The LDAA published this document in 2017, after Dr Wills’ thesis was made publicly available.
  
• Evidence for a Lyme-like illness in Australia. Extract from Australian Chronic Infectious and Inflammatory Diseases Society (ACIIDS) Submission 370 to 2016 Senate Inquiry.

• In 2016, Australian researchers at Murdoch University in Perth found a new species of Borrelia in their study of 97 echidna ticks, with 39% of the ticks carrying the Borrelia bacteria*
  
• IGeneX immunoblot tests find Lyme in Australian blood samples. In a study of 100 Australian patients, 21% had been exposed to Borrelia burgdorferi sensu lato, the causative agent of Lyme disease, 18% to the tick-borne relapsing fever Borrelia group, while a further 7% were exposed to both groups of Borrelia.
  
• Epidemiological evidence found within 2016 Senate Inquiry submissions.

If the disease Australians are suffering manifests as identical or very similar to classical Lyme, if thousands of Aussie patients’ lab tests have returned positive results for Borrelia, and they respond well to Lyme treatments, why not call it Australian Lyme?

There are thousands of Australians who have the symptoms of Lyme Disease Infection, positive test results, and some have had the tell-tale Lyme “bullseye” rash after a tick bite.

Current Health Policy

The Department of Health will not entertain the possibility that these patients have Lyme disease unless they have travelled overseas. If they haven’t travelled, their advice to doctors is “Do not test for Lyme disease”, regardless of the symptoms observed.

Referral to Infectious Disease Specialists: According to the DSCATT Clinical Pathway, if the patient has travelled overseas and has Lyme symptoms, they will be referred to an infectious disease specialist with the possibility of an official Lyme diagnosis. They may also be referred to an infectious disease specialist if a recognised Australian tick-borne disease is suspected by the GP.

If the patient does not fit into one of those two groups, the Department of Health classifies the illness as “DSCATT – Debilitating Symptom Complex Attributed to Ticks,” though this is not a diagnosis, and this description has not proven to have improved the situation for patients in any way.

If the practitioner follows the DSCATT Clinical Pathway (the Department of Health’s doctor’s guide for tick-borne diseases), symptom management is all they will be able to offer.

(NB. The LDAA strongly disputes the term DSCATT and the DSCATT Clinical Pathway).

The result of current government policy and the lack of research into Australian Lyme disease and other tick-borne pathogens, is thousands of very ill patients with “DSCATT” (we prefer the more accurate name – Australian Lyme disease) who are being denied a diagnosis, appropriate care and support.

The Australian Centre for Disease Control information on DSCATT.

The LDAA’s 2021 response to the DSCATT Clinical Pathway.

There is a very wide gap between current health policy and government stance, and the LDAA’s anecdotal evidence from hundreds of patients; many of whom have positive Lyme tests from accredited laboratories outside Australia.

See also Lyme Diagnosis and Lyme Treatment.

The following video – Medically Abandoned in Australia – gives an overview of the current situation for patients in Australia.

How big is the problem?

Due to the Government’s “Lyme denial” there is no official data that may help to quantify the size of the Lyme problem in Australia.

There has been no epidemiological study or surveillance mechanism established.

No investment into research on Lyme disease, its causative agent or its aetiology occurred in Australia for twenty years, until the 2016 Senate Inquiry. In that time, seven new Borrelia genospecies were isolated internationally.

The Lyme Disease Association of Australia has been collecting anecdotal information from patients identifying with Lyme disease. These patients have a confirmed diagnosis of Lyme by a doctor.

Our data indicates that Lyme is non-discriminatory. It can affect anyone in major cities, urban, regional, rural and remote locations. On average, it takes a patient ten years to gain an accurate diagnosis.

If Australia were to use a similar prevalence rate to that reported in the US, over the past 20 years there may be up to 496,153* Australians who have acquired Lyme. That’s up to 20,000 cases per year.

* Estimated 0.09% incidence pa x ABS Population statistics cumulated yearly since 1994

Lyme is controversial internationally as well. In particular, chronic Lyme is still widely denied, despite a great deal of evidence to the contrary.

Diagnostic protocols and testing

Generally, the diagnostic protocols, processes and tests used in Australia, that are recommended by mainstream practitioners, are inappropriate. Some Australian laboratories produce discordant test results.*

Independently, or with assistance from a Lyme-literate practitioner, patients routinely send their blood overseas for testing in specialist laboratories at significant expense. (See Lyme Diagnosis).

Results from any overseas lab that is a signatory to the ILAC MRA agreement (an international agreement regarding laboratory standard equivalency) should be recognised, but Australian health authorities refuse to do so, insisting on NATA accreditation, which is unnecessary for ILAC MRA signatory labs.

See also Lyme Diagnosis

*   Baggoley, C (former Chief Medical Officer) 2016, Health Media Statement, Media Release, Woden, Canberra, February 2016

Lack of education

The Australian medical community and the general public are under-educated on emerging illnesses that can follow a tick, or other vector bite. Doctors need better support, contemporary research and unambiguous guidelines that keep pace with emerging research. Our communities need information and education about the prevention of tick-borne disease with advice on protection strategies.

At this point in time, most Australians (including doctors) would not necessarily connect symptoms of ill health with a recent tick bite. And that is why so many patients suffer, unnecessarily, for years without a diagnosis.

How you can help

The LDAA is more committed than ever to supporting the Australian Lyme and associated diseases community.

You can help by becoming a member or making a donation. Talk to friends and family about Lyme, and Like and Share posts from our Facebook page.

Visit our Easy Ways to Take Action page.

* Loh, S. M., Gofton, A. W., Lo, N., Gillett, A., Ryan, U. M., Irwin, P. J., & Oskam, C. L. (2016). Novel Borrelia species detected in echidna ticks, Bothriocroton concolor, in Australia. Parasites & vectors, 9(1), 339. doi:10.1186/s13071-016-1627-x.

Copyright Lyme Disease Association of Australia