For seven years, Tanya Dupagne lived with symptoms that doctors couldn’t put their finger on. Fatigue, extreme pain, poor concentration, brain fog, low-grade fever, issues with her muscles. One neurologist suggested she may have Multiple Sclerosis, but it was when someone mentioned the tick-borne illness, Lyme Disease, that everything clicked for Tanya.

The former Rural Woman of the Year and head of the children’s charity Camp Kulin in W.A. had been bitten by a tick while working in the United States, which is a known hotspot for the disease.

But as she discovered, the Australian medical community’s resistance to claims that the disease occurs locally makes diagnosis and treatment — even for accepted cases like hers — incredibly hard to come by.

What is Lyme Disease?

Lyme Disease is an illness caused by an infection from the bacteria Borrelia burgdorferi, typically transmitted to humans via the bite of some species of ticks. Ticks carrying the infection can be found in Asia, Europe and North America.

In fact, Lyme Disease is the most common tick-borne illness in the Northern Hemisphere. The US’s public health institute (Centers for Disease Control and Prevention) alone receives reports of roughly 30,000 Lyme Disease cases each year.

But according to researchers, it doesn’t exist in Australia.

Why is it not recognised in Australia?

According to the Medical Journal of Australia and a number of medical authorities, including the Royal College of Pathologists of Australasia, there is no convincing evidence that Lyme Disease occurs in Australia, nor is there evidence that the bacteria that causes it exists in any Australian animal or insect.

However, some people argue that this evidence is based on a sole 1994 government-funded research study that failed to find the North American strain of the bacteria in Aussie ticks. Critics of the research argue that it didn’t test for similar strains of the bacteria that may cause illness and nor did it test any other insect, such as a mosquito or a flea, that may carry the same or similar strains.

Listen to The Quicky, Mamamia’s daily news podcast, talk about Lyme Disease. Post continues below.

How is Lyme Disease diagnosed in Australia?

As a result of the Australian medical community’s position on local Lyme Disease and the fact that symptoms (including a circular red rash around the tick bite, fever, headache, joint aches or swelling, and swollen lymph nodes) can also be caused by a host of other conditions, diagnosis can be difficult to come by.

It usually occurs via a combination of clinical presentation (ie. a doctor’s assessment of symptoms) and lab testing.

However, there are questions about whether Australian labs are equipped to test for the bacteria. Some say that, as a result, patients have been scammed into spending large amounts of money to send blood to unaccredited overseas labs, only to get a false-positive result and then put themselves through unnecessary treatment.

What treatment for Lyme Disease is available in Australia?

In a Lyme Disease endemic country, after a positive diagnosis, treatment would involve antibiotics to fight the bacterial infection.

Dr Brad McKay, a family doctor and science communicator, explained to Mamamia’s daily news podcast The Quicky, that these antibiotics are usually effective. However, delays in administering them can lead people to be sick for longer periods of time.

Some patients call this “chronic Lyme Disease”, but as Dr McKay says, “at the moment in medicine, we sort of see that as being a bit of a fictitious diagnosis. It’s not that the Lyme is sitting in your body chronically, but it is that it has set up a long-term inflammatory process, which can give people all sorts of horrible symptoms. So that’s anything from having muscle aches and pains, weakness, fatigue, headaches, and just feeling really clouded.”

Tanya is among those with long-term, ongoing symptoms.

She says treating these is currently costing her up to $2,000 per month, made all the more difficult by the fact she is unable to work. Because Lyme Disease is not recognised in Australia, she is unable to obtain mortgage insurance or Centrelink payments to help ease the financial burden.

“Mine actually should be a really clear-cut case,” she told The Quicky, “because I have a known tick bite from a known endemic area in America; I’ve had a known bullseye rash, which is the Lyme-specific rash that indicates Lyme; I have tested positive in an internationally accredited lab in Germany; I have an MRI that actually shows two lesions on my brain consistent with tick-borne illness; and all my blood work is consistent with Lyme, as well as a list of over 40 clinical symptoms that are also consistent. Yet I’m still struggling to access treatment here in Australia.”

Is more research being done?

The Australian Department of Health says they are aware that there are many Australians who are experiencing chronic debilitating symptoms, which many sufferers associate with a tick bite, and have promised that at some stage in 2020 they’ll be releasing educational material that will help assist health professionals and the public better understand Lyme disease.

But they have made it clear that it will be an evidence-based care model. So if the evidence still shows that there is no bacteria that causes Lyme disease present in an Australian-based vector, like a tick or a mosquito, then they have to base their response on that.

In the meantime, even people like Tanya, whose cases were contracted overseas and aren’t disputed, are facing off against a medical system ill-equipped to offer proper help.

“The deterioration has just been so extreme for me,” she said, “it’s just about being able to get out of bed in the morning and make it through the day.”

Feature image: GoFundMe.