Gaslighting and cults: our baffling relationship with tick-borne diseases

8 minute read


And it’s not just patients who are undermined and shunned.


Elements in the Department of Health and Aged Care are being “wilfully obstructive” when it comes to the diagnosis and treatment of people with tick-borne diseases, according to evidence given at the Senate inquiry into access to diagnosis and treatment of people with tick-borne diseases today.

This is not the first time an inquiry has looked into tick-borne diseases. A 2016 report was “very good,” said Mr Christopher Cole, who has watched his daughter deteriorate over 30 years of having Lyme disease and who drove to Canberra from Hamilton in Victoria to give evidence.

“But it, of course, was shelved. Now I am fearful that the same thing is going to happen here. I’m fearful your report, after a big fanfare, will be slowly shelved, and my daughter will have one more barb in her heart.”

The cult of no-Lyme disease

Jacqui van Teulingen, who was previously a public servant and appeared at the hearing as a representative of the Lyme Disease Association of Australia, said that the government’s treatment of people with tick-borne diseases was “baffling” and “frankly, negligent”.

Senator Linda Reynolds said there was “unfinished business” from previous inquiries and the treatment of people with tick-borne diseases was “much more than baffling”.

“After having been looking at this for many years now, to me it almost seems like a cult,” she said.

“For some reason, the medical profession and those who are the senior representatives in the department and other organisations …  they have, for some reason over many years, got themselves into this psychology where it is a cult, and if anybody speaks out against it, or says something different, they look for ways to invalidate and persecute.”

Mr Peter Owen, president of the Tick-borne Illness Community Network Australia, told the committee there needed to be more tick education for both the public and for medical professionals.

“I’m astounded that it’s not even out there. This ‘no-Lyme’ dogma that’s infiltrated this whole thing has been an absolute furphy. We’ve definitely got harm from our ticks,” he told the hearing. 

After the 2016 Senate inquiry, the Department of Health and Aged Care developed the debilitating symptom complexes attributed to ticks (DSCATT) clinical pathway.

DSCATT was roundly criticised during today’s hearing. Dr Richard Schluefiel, a GP and senior clinical lecturer at Macquarie University involved in biomarker research, said it should be dismantled immediately and there were good guidelines available internationally.

Ms van Teulingen said the clinical pathway was not a solution but a “bureaucratic roadblock”.

There were people in the department “wilfully” obstructing progress, she told the inquiry.

“I don’t know how they show up everyday … We had a really red-hot go, thousands came out and shared their story, and we feel it’s just fallen on deaf ears. The Department of Health and Aged Care submission to this inquiry is a superficial box-ticking exercise, and it highlights their ongoing refusal to address the issues that are before them. It’s a cut and paste job. It’s diabolical.”

Ms Elaine Kelly, a collaborating partner of Sarcoidosis Lyme Australia, said the pathway should be removed from the DoHAC website.

“I don’t know if many doctors have actually read it, or they’re frightened of word getting about that you can’t treat Lyme disease, and also they’re frightened of being audited for antibiotics,” she said.

“The second thing to do is let it be known that doctors can test and treat simple infections, so you don’t get sent to an infectious disease specialist unless you have a complex infection, and a lot of this isn’t complex at the beginning. It’s only complex when it’s allowed to get complex.”

Treatment by stealth

Clinicians of all specialties needed some education on tick-borne diseases, said Ms Sharon Whiteman, president of the Lyme Disease Association of Australia, but it was mostly GPs that took it on.

“There’s going to be a rare gem in the specialties in rheumatology or neurology or immunology, but if they think outside the box, they’re going to be shunned, and they’ll be doing it in secret. That’s the bottom line.”

Funding to train GPs was needed, she said.

“They need to have their education supported and respected and [to not be] gaslit. It’s not only the patients that get gaslit. Our doctors do as well.”

Dr Schloeffel said there was very little knowledge about tick-borne diseases among GPs, and the current environment made things difficult for those who wanted to help.

“We as doctors have to watch our back all the time, because we are seen as dangerous to the community,” he said.

“We’re really hamstrung by the lack of education, but [also] the lack of ability to practice safely without someone actually advising AHPRA or the Healthcare Complaints Commission.

“If you haven’t got the education, then you’ve got fear amongst the doctors in diagnosing and treating those people. You automatically disenfranchise the patients, but you also disenfranchise the doctors who have the capacity to do this.”

There used to be many cases of illness related to tick bites in the Northern Beaches area of Sydney, said Dr Schloeffel.

“If someone gets a tick bite, GPs quietly will give doxycycline, or if it’s a child, erythromycin for seven to 10 days, and we do not see the same level of tick-borne illness that we were seeing 28 years ago.

“It’s primarily because those GPs in our area have been educated. The council has signs: there are ticks in this area, if you get sick see your GP, you might have an infection.”

People were being treated “by stealth” he said.

“If you don’t get rid of that organism, you may well become chronically ill. But if you have seven days, 10 days of doxycycline, 200 milligrams a day, or 100 milligrams a day erythromycin if you’re a child, anecdotally, you do not develop infection, which I think is why we’ve seen a reduction in the patients from that area with chronic disease that we were seeing over the past 25 years or so.”

Testing failure

The tests required to properly diagnose patients are not available in Australia, but they are available overseas, the committee heard.

They are not approved in Australia, but they should be, said Dr Leona Gilbert, an adjunct professor in cellular molecular biology who is the CEO of Tezted Ltd, a company that’s developing diagnostic tests, as well as Lyme Disease Association of Australia Scientific Advisory Committee chair.

The TGA uses ISO accreditations 13485 as a standard for tests, and NATA has accredited international labs by signing an international recognition agreement regarding the ISO 15189 standard, she said.

“That means NATA should have accepted and allowed these accredited overseas labs performing approved test kits,” said Dr Gilbert. “How we can do better is acknowledging these agreements; that actually there is good testing available. However, it’s not being employed in this country. There is Australian utility… and there are novel, innovative diagnostics like AI to be used on data from patients.”

Professor Holly Ahern, a professor of microbiology at the State University of New York who co-founded a Lyme disease advocacy organisation at New York State and is also working with a company investigating diagnostic test, said the tests currently used in Australia came up with a false negative in 70% of cases.

And that rules nothing out, said Dr Hugh Derham, a board member of the Australian Chronic Infectious and Inflammatory Diseases Society who has been treating tick-borne infections for 15 years, because infections are hiding in biofilms so the immune system can’t see them and antibiotics can’t treat them, he explained.

“We’re failing the patients,” said Dr Gilbert.

“We have the tests – advanced serology tests – and they need to be used correctly, at the right time, with an understanding of what their limitations are. “Having false positive is an easy and very lazy way of disregarding test results,” she said.

In a statement released today, the RACGP said: “On 20 November 2024, the Senate referred the Access to diagnosis and treatment for people in Australia with tick-borne diseases matter to the Senate Community Affairs References Committee for inquiry and report. The RACGP’s response highlights the key role of GPs supporting patients who present with diseases which are medically challenging to diagnose and that up-to-date evidence-based resources are required for both GPs and patients to combat misinformation and address patient concerns.”

In its submission to the inquiry dated 22 January 2025, the RACGP said:

“… [M]isdirected care can lead to underdiagnosis of overlapping conditions and expensive diversion of patient and clinical resources.

“We need to be mindful that unnecessary medications, testing or procedures are low value care and can cause more harm than benefit. As there is currently little or no evidence to support specific treatments for tick-borne diseases, it is important that all patients have access to and are provided with safe and high-quality care. To address this:

  • authorities such as the Therapeutic Goods Administration (TGA) should consider ways to reduce access to low value or harmful treatments.
  • government funded information services, such as Health Direct, could provide evidence-based information that aims to prevent vulnerable people being financially and physically harmed by low-value treatments.
  • investment is needed in research and GRADE level clinical guidelines.”

Coverage of the second part of this hearing can be found here.

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