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. But the current stance of the Australian Government is that classical Lyme disease cannot be contracted in Australia. This is due to the belief that the bacteria (Borrelia) that causes Lyme does not exist here.

This perspective is based on 1994 research that failed to find Borrelia in Australian ticks (tick bites being the most common way to contract the bacteria). However, earlier and later studies have found Borrelia species in ticks removed from Australian fauna, domestic animals and cattle.

Lyme LDAA - Australian Lyme sign

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

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

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. If a recognised tick-borne disease is suspected, they may be referred to an infectious disease specialist. If they do not fit into one of those two groups, the Department of Health dictates that the illness be called “DSCATT – Debilitating Symptom Complex Attributed to Ticks” though this is not a diagnosis. If following the DSCATT Clinical Pathway (The Department of Health’s doctor’s guide for tick-borne diseases), symptom management is the best a doctor in the mainstream medical system can do.

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.

Lyme LDAA - Australian Lyme inset - sick child

Current Australian policy documents regarding DSCATT (NB. The LDAA strongly disputes these conclusions around Australian Lyme disease).

Read the LDAA’s 2021 response to the Clinical Pathway.

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

These patients are forced to quietly seek diagnosis and treatment from the few Lyme-literate doctors in Australia; though these doctors’ registrations may be at risk if they were reported. They may consult with a Lyme-literate practitioner or clinic overseas, or find a complementary practitioner, perhaps a Lyme-literate naturopath who is able to diagnose and treat Lyme without professional repercussions.

See also Lyme Diagnosis and Lyme Treatment

Contact us – we will help you find a suitable practitioner.

Medically Abandoned in Australia
Jacqui van Teulingen, consultant for the Lyme Disease Association of Australia addresses the National Rural Health Alliance. 6 April, 2020.

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. 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

Australian Lyme, a Global View
LDAA CEO Sharon Whiteman interviews LDAA Patron and internationally renowned Lyme expert, Dr Richard Horowitz. Recorded 22 Dec 2019.

Lyme is controversial internationally as well. It is considered to be “hard to get and easy to treat” with chronic Lyme being widely denied. There are two opposing views on the length and type of treatment and research can support either side of the argument. Australian authorities have imported this controversy.

Diagnostic protocols and testing

Generally, the recommended diagnostic protocols, processes and tests used in Australia are inappropriate. Soe 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). International laboratories commonly used by patients meet the highest international standards. Under international agreements, they are eligible for reciprocal recognition through the National Association of Testing Authorities (NATA). And yet their results are dismissed by Australian health authorities.

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.

What can I do?

Sign the LDAA petition to Health Minister Greg Hunt.

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.