WATCH: Australian Lyme disease slowly killing its victims
IT'S been labelled as one of the biggest medical scandals in recent Australian history, reducing thousands of Australians to "lepers" in their own country.
In a country with one of the best health systems in the world, they continue to suffer from a debilitating illness for which there is no widely available treatment.
Many are no longer with us, dying from complications or tragically choosing to end their life after losing hope.
Those affected by the disease were all bitten by ticks.
In Europe and North America tick-borne diseases have been treated as a serious public health issue. But not here.
Australian sufferers say the medical establishment and successive governments have failed them.
The rigid denial of the existence of Lyme disease, the North American form of the tick-borne borellia bacteria, has stymied the development of protocols to treat the disease.
Last year a high profile Senate inquiry revealed victims and the small number of doctors offering them treatment feel they are fighting an uphill battle with a medical establishment which has ridiculed and punished them.
A glimmer of hope emerged in April with a commitment by Federal Health Minister Greg Hunt on his first day in the portfolio to tackle the problem.
But for many people it is already too late.
Ocean Shores resident Francene Lee Taylor said her doctor "laughed" at her when she brought up Lyme disease after being bitten by a tick in Wilsons Creek years ago.
The morning after the bite, her hands were paralysed and it was "like standing on broken glass".
Early symptoms included "massive" headaches, hyper sensitivity to light and sound, stiff neck, panic attacks, forgetfulness, flu like symptoms, heavy muscles, stabbing pains and tingling.
But doctors ignored her.
"They told me there was no serious tick-borne illnesses in Australia," she said.
"They tested me for Lyme disease which of course came back negative because we don't have a proper test in Australia."
But a urine sample she sent to the US tested positive to multiple tick borne illnesses.
She's since embarked on a brave campaign to raise awareness about tick-borne diseases while managing her own worsening symptoms.
Ms Lee Taylor said people with tick-borne diseases were being "laughed at, mocked, and belittled by the disease specialists".
"Over the years I have watched thousands and thousands of people suffering physically and mentally," she said.
"Patients are having to leave the country to get treatment and recognition and when they go to these clinics overseas doctors are saying 'what is happening in Australia?'
A doctors had told her even if they prove she had the disease they didn't know how to treat it because there was no existing protocol in Australia.
"The doctors aren't educated in how to treat it because they've been in denial of its existence for so long," she said.
Her recurring symptoms, which come in bouts, include fatigue so debilitating that on some days that "just getting a glass of water is difficult".
Then there are the horrible facial palsy attacks - which strike three to four times a month for several hours at a time.
Ms Lee Taylor said she had entered the final stage of what was a "classic" tick-borne disease progression - and admitted she had surrendered hope of surviving.
She said some tick-borne disease sufferers ended their lives "because they run out of money, they're bedridden... and their doctors don't believe them. They'd rather die than be a burden, and they would rather die than end up homeless and broken."
The organisation she founded, Tick Awareness Australia, aims to improve public education about the dangers of ticks. "The most proactive thing I can do is make tick awareness Australia happen and educate people on safe removal and prevention," she said.
"People need to understand how potentially deadly ticks are."
Vet's experience ignored
Former North Coast vet John Curnow was a pioneer in researching a tick-borne disease called babesia which posed a threat to the cattle industry in the 1960s.
It was therefore doubly tragic that Mr Curnow lost his wife, Barbara, to cancer in 2012 which he believes was severely aggravated by a tick-borne disease she contracted in 2008.
Mr Curnow said that three decades ago Australian doctors observed for symptoms of relapsing fever and treated it accordingly.
"If you treat someone in the first couple of weeks after a tick bite with antibiotics, you stop the disease," he said.
But in the 1980s the medical authorities introduced the US test for Lyme, the so-called ELISA test.
"They tested 4300 people with the ELISA test... between 1988 and 1994," Mr Curnow said.
"In America if you tested that number of people with the symptoms you would get 50% positive... here, we didn't get one positive result.
"The red light should have come on... it was not the same organism as in North America."
Mr Curnow said medical authorities should have dropped the failing ELISA test back in 1994, and gone back to treating people on their symptoms.
"They didn't do that... for the next 22 years they continued the ELISA test, had very few positive reactions... and told people like my wife you haven't got Lyme disease so you don't get treated."
Mr Curnow said medical authorities and researchers still failed to consider the myriad of borrelia species of which Lyme is only one.
"No one ever mentioned the possibility of these other species. By that stage (in 1994) there were at least 20 known (variants) of the relapsing fever known throughout the world."
Bellingen GP Gull Herzberg has treated up to 400 patients with suspected tick-borne disease symptoms in the last seven years.
Dr Herzberg said said early use of antibiotics could make a "huge difference" in treating the disease but not for everyone.
"I'm basing my practice on evidence-based medicine... (which) is a triangle between the best available evidence and the clinical experience and expertise of the doctor and the patient's preference and philosophy," he said.
"We have to treat the whole person... very often people who have been sick for a long time have got lot of things that have gone wrong; a lot of dominoes have fallen over."
Dr Herzberg said it was vital any funded research on the disease coordinated closely with GPs with clinical experience in the field: "We know more about this type disease than many, and it's complex."
The Karl McManus Foundation was formed by neuroscientist and immunologist Dr Mualla McManus, whose husband Karl died from a tick-borne disease in 2010 after years of chronic symptoms.
It has no public funding and the research funds it has raised are mainly from sick individuals.
Dr McManus said research had already been done the 1950s proving the existence of a native borrelia strain dubbed "Borrelia Queenslandica", which was found in native rats.
What was still missing is the hard evidence of its presence in humans.
In June Dr McManus will address the World Health Organisation in Geneva about "the discrimination" against patients in Australia over tick-borne diseases.
"We want the WHO to look at it as borreliosis, which is the parent disease and the proper name for it. The trouble is there is no test which can test for all (of the) borreliosis (strains) effectively."
Dr McManus said the foundation has sought to collaborate in jointly-funded research with the National Health and Medical Research Centre (NHMRC).
Dr McManus said the Australian disease was for now being referred to as "Australian relapsing fever" in an effort to distinguish it from Lyme disease.
"The term Lyme disease should be removed from the debate in Australia to stop this controversy so we can address this disease properly," she said.
"We need a neutral name and a neutral approach."
Health Minister takes action
In April Federal Health Minister Greg Hunt asked the National Health and Medical Research Centre (NHMRC) to fast-track a targeted call for research into Lyme disease and Lyme-like illnesses in Australia "as a matter of priority".
"Reports of people experiencing such a chronic and debilitating illness is concerning and the Minister has deep sympathy for what patients and their families are going through each day," a spokesman said in a statement.
"While the medical authorities have yet to conclude that this particular condition exists in Australia the Minister believes that families deserve a full medical review and analysis.
"The Minister has asked that the NHMRC establish a committee of independent scientific experts and consumer representatives to frame the research subjects."
What the NHMRC says
In a statement the NHMRC said it was approaching potential members for the Expert Advisory Committee.
"The committee will be tasked with identifying the most appropriate research questions to be addressed by the Targeted call for Research (TCR)," a spokesman said.
"It will consider the existing research effort, both locally and overseas, and the TCR proposals submitted by community groups.
"The committee will include researchers, infectious disease physicians, general practitioners with an interest in infectious disease issues, and a consumer representative.
"NHMRC anticipates that research funding for projects selected through the TCR will commence in 2018."
TICK SAFETY TIPS
Prevention is better than cure
Ticks can expose you to dangerous bacteria, parasites and viruses. Correct removal protects you from tick borne diseases.
Never agitate, squeeze, burn, twist, flick or apply chemicals on the tick. This can cause the tick to regurgitate toxic gut and saliva contents exposing you to tick borne diseases.
How to safely remove a tick
Using quality fine-tipped or pointy tweezers, firmly grasp the tick as close to the skin's surface as possible.
Pull the tick upwards with a slow steady motion without jerking or twisting.
Disinfect the area wash hands and clean tweezers after removal.
If you ever experience any reactions (allergic/anaphylactic) to tick bites, seek medical assistance immediately.