Friday, August 27, 2010

Australian Doctor's Crusade on Lyme Disease Awareness

DOC'S ON TICK CRUSADE - Port Macquarie News
21 Jul, 2010 04:00 AM

A LAURIETON doctor has vowed to boost awareness about a tick-borne disease health authorities say does not exist here.

GP Dr Peter Mayne is treating 12 patients for Lyme disease. Another two patients are being tested for the disease.

Lyme disease is a bacterial infection that can affect the nervous system, heart and joints if untreated.

A Sydney woman was awarded a Supreme Court injunction to have her dead husband tested for the disease earlier this week because the NSW Health Department maintains no case has been transmitted in Australia

NSW Health Minister Carmel Tebbutt said two months ago there was not enough evidence to support the existence of the organisms that cause it.

But Dr Mayne said a test did exist that could give absolute proof of Lyme disease.
The illness is treated with antibiotics.

“It’s a really difficult disease to diagnose,” he said.

Dr Mayne has had an interest since 1992 in the early infection that goes on to cause chronic Lyme disease.

He believes more needs to be done to increase awareness within the medical community and beyond.

Since March, Dr Mayne has updated and edited his website in a bid to do just that.

“The website is an attempt to educate the medical profession,” he said.

He also is searching for doctors who have had Lyme disease.

Public education about Lyme disease and what to do in the case of tick bite also was needed, Dr Mayne said.

The GP advises people to remove the tick, ideally with tweezers to remove as much of the head as possible.

Lyme disease is not on the notifiable disease list which, under law, must be reported to public health authorities.

Dr Mayne said Lyme disease was not passed from one person to another and should not be a notifiable disease.

Lyme disease is the most common tick-borne disease in the world.

Newcastle-based medical microbiologist Dr Stephen Graves said most Lyme disease research came from the USA, Canada and Europe.

Dr Graves said he was open minded about the question of whether Lyme disease existed in Australia.

“People are getting tick-borne diseases that are clinically consistent with Lyme disease,” he said.

But he said the jury was still out on whether Lyme disease was endemic to Australia.
NSW Health did not respond to the Port News late yesterday.

A 2004 NSW Health “tick alert” brochure said the bacteria known to cause the disease in other parts of the world had not been found in Australia.

Quoted from website:

Lyme Disease Victims Speak out in Australia

Health 3 Aug 10 @ 04:52pm by Rep7 Rep7

WHILE experts maintain that there is no presence of Lyme disease in Australia, northern beaches victims are insisting otherwise.

Studies have concluded that those diagnosed with the disease must have been bitten by infected ticks while travelling in Europe or the United States.

But try telling that to Avalon resident Sarah Bayes, who suffered from a tick bite for 16 years that she received in her garden.

“I contracted what was described as a Lyme-like illness from a tick bite in 1989,” she said.

“It was five years before I was diagnosed and my illness was acknowledged as something.”

As Ms Bayes became progressively sicker she exhibited symptoms similar to Lyme disease.

“I was a very fit and healthy person prior to the tick,” she said. “I had unusual fatigue, heart problems and arthritis. They did all sorts of tests on me but they came back normal.”

It wasn’t until Ms Bayes was treated by an infectious disease specialist that she was put on an antibiotic treatment given to sufferers of Lyme disease.

“I’m aware of the study that has been done by experts, but as someone who has suffered the symptoms I can assure you there is something there,” she said.

A victim who did not wish to be named was forced to move out of the northern beaches under doctors’ recommendations due to the high rate of ticks in the area.

“My symptoms are ongoing. It does subside a little but as soon as I try and lead a normal life, like gardening for a day, it takes me two weeks to recover,” she said.

“I can’t understand why the Health Department is in denial when there are so many cases on their books.”

Quoted from website:

Australian's Lyme Disease Testing Inadequate - ABC

Bronwyn Herbert reported this story on Tuesday, July 20, 2010 12:30:00

ELEANOR HALL: Scientists say that better tests would help to confirm whether Lyme disease exists in Australia.

The rare tick borne disease can be fatal to humans and last week a Sydney woman won a court case that enabled her to posthumously test her dead husband for the disease.

The New South Wales Health Department says there's no solid evidence that the disease exists in Australia. But the case has raised questions about whether Australia's testing procedures are adequate.

Bronwyn Herbert reports.

BRONWYN HERBERT: Lyme disease is a debilitating condition transmitted from animals to humans via tick bites.

Its symptoms are described as similar to syphilis - fevers and lesions and if left untreated leading to more chronic illness and even death.

In the northern hemisphere it's the most prevalent tick born disease. But in Australia debate still rages in the medical community as to whether it actually exists.

Doctor Stephen Graves is the director of microbiology at the Hunter Valley Pathology Service.

STEPHEN GRAVES: Two schools of thought on this. One group think that it does exist because there have been patients with illnesses that are clinically consistent with Lyme disease and another school of thought is that it doesn't exist here because there's been no evidence of the organism being detected in ticks and quite a few ticks have been examined.

BRONWYN HERBERT: The Health Department of New South Wales says there's no solid evidence that the disease exists here.

STEPHEN GRAVES: That's correct. To have solid evidence you need to have not just patients presenting with an illness but you need to isolate the micro-organism.

So for example until such time as we've isolated Borrelia Burgdorferi - which is the name of the bacteria causing Lyme disease - until we've actually isolated it from a patient in Australia who's never been out of Australia or we've isolated it from a tick that's an endemic tick in Australia - until such times as that occurs there's going to be a question mark about the presence of the disease in Australia.

BRONWYN HERBERT: How's the disease tested?

STEPHEN GRAVES: Well there's several ways. The best way is to actually grow the micro-organism. So you actually take a sample whether it's from a patient or a tick and you put it into culture and you actually grow the micro-organism.

Now Doctor Hudson did this on one patient a few years ago and we thought he'd clarified the issue once and for all, but in fact it turned out that the patient had been to Europe and they could well have been infected in Europe.

BRONWYN HERBERT: The Supreme Court in New South Wales has given a woman permission to get the body of her husband autopsied to determine if he died from Lyme disease.

The woman claimed her husband was bitten by a tick three years ago while filming a television series in Sydney bushland.

The man tested negative to Lyme disease in Australia but further tests performed in Germany and the US proved positive.

Doctor Graves says a posthumous test would be very difficult.

STEPHEN GRAVES: If the person's dead, it's going to be very, very hard to test for the presence of an organism and those assays (phonetic), they are available but they're not highly developed Lyme disease in Australia, so it probably... It may be possible but a laboratory in the United States or somewhere in Europe would be more skilled at doing this test.

But if a disease is not widespread in a country then the testing methodologies and the testing skills are not as well developed.

BRONWYN HERBERT: So is this a call to actually improve the testing methodology for this disease?

I suppose in a background sort of way, yes, because we really do need to know whether this disease occurs here on not. But there are tests for Lyme disease in Australia but it's just that we don't use them very often.

BRONWYN HERBERT: Doctor Jeremy McAnulty is a director with the New South Wales Department of Health.

He says Lyme disease is not currently a threat in Australia.

JEREMY MCANULTY: We always have an open mind. We'll always be looking out to see if there is evidence emerging of Lyme disease but certainly people should talk to their doctor about their symptoms and their doctor needs to make a clinical decision about whether or not the person needs to be tested for and treated for Lyme disease.

BRONWYN HERBERT: Do you think the testing methods for Lyme disease here in Australia are adequate?

JEREMY MCANULTY: Look they do seem to be and again we need to put in context who needs to be tested and when and the doctor’s decision and advice about that. But there is a specialist laboratory at Westmead that’s very expert in the range of tests that need to be done and can be done and they of course keep in contact with the experts around the world.

ELEANOR HALL: Doctor Jeremy McAnulty is the Director of Health Protection with New South Wales Health. He was speaking to Bronwyn Herbert."

Quoted form website:

Thursday, August 5, 2010

Widow to sell 2.5M home to fund a Lyme Disease Research Foundation in Australia

Lyme mystery ticks all the boxes - SYDNEY MORNING HERALD
July 24, 2010

Experts insist Australia has no problem, writes Kate Benson, but try telling that to victims.

It is less than a third of the width of a human hair but it has created a furore in Australia, dating back decades.

According to the federal government, the microscopic Borrelia burgdorferi bacteria, known for spreading lyme disease, does not exist in Australia.

It insists that those diagnosed must have been bitten by infected ticks while travelling in Europe or the United States, where lyme is common. That view is based on a 16-year-old study by Sydney researchers who found no evidence of Borrelia burgdorferi in more than 12,000 ticks collected from the length of the NSW coast.

Karl McManus ... died last week.

The team, led by Richard Russell from the department of medical entomology at Westmead Hospital, did not even find ticks carrying bacteria which could cause a lyme-like syndrome. ''The family of ticks is not here. They weren't here then and they wouldn't be here now,'' says scientist David Dickeson, who took part in the study.

But that view is challenged by victims who insist they have caught the disease within Australia. Some, such as Mualla Akinci, whose husband Karl McManus died last week from lyme complications, want recognition for sufferers and more advanced testing procedures. Others, such as Anthony Brown, who contracted the disease from an infected dog, want a public health campaign to warn people of the dangers.

''People with lyme disease are being misguided, mistreated and ignored,'' Akinci says. ''They are being left in the corner to suffer and die. Nobody wants to know about them and I don't understand why.''

Formerly fit and healthy, McManus, 44, was bitten by a tick while working on the set of Home and Away in Waratah Park, and in the months before his death could no longer lift his head or swallow and was using a message board to communicate.
His claim for workers' compensation was rejected by the insurers Employers Mutual, who wrote to him: ''You have not suffered lyme disease due to the course of your employment … as the diagnosis has not been confirmed and there is no known or proven case in Australia.'' Its decision was based on a medical report by the physician Peter Slezak, a Sydney medico-legal consultant.

But only months earlier Akinci was told her complaint to the Health Care Complaints Commission about her husband's treatment at Hornsby Hospital could not be investigated because there were no lyme disease experts in Australia.
''So if we have no lyme disease experts here, how was it decided he didn't have lyme disease?'' she asks.

Anthony Brown, 54, from rural Victoria, tested positive for lyme disease in 1988 after a friend, travelling with a dog, visited him from Cairns. Brown, a special needs teacher, had never travelled overseas - he'd never even been to NSW - but the visiting dog was riddled with ticks.

''I lived a very quiet, contained lifestyle, but a few weeks after that dog arrived I was very, very sick for many years.''

His case was so unusual that his GP wrote about it in the Australian Family Physician journal in 1990.

But experts still remain divided on the disease's legitimacy in Australia. NSW Health concedes the tests to diagnose lyme are ''technically complex'' and rarely definitive, and ticks here could be carrying unknown infections which manifest similarly to lyme disease. Dickeson agrees: ''There are ticks out there carrying things no one knows about.''

But for now he remains certain lyme is not among them. ''I test a couple of thousand people a year and get a positive result about once a month. And I can tell you that every one of those had a travel history to the northern hemisphere.
''We've never had one person who contracted it locally.''

For Akinci, her husband's funeral yesterday marked the beginning of a long campaign.
She is selling her $2.5 million Turramurra home to fund a lyme disease research foundation and has a message for the authorities: ''Stop telling people this doesn't exist before someone else dies.''

Quoted from website:

NSW Supreme Court grants Lyme disease autopsy

Court grants Lyme disease autopsy - SYDNEY MORNING HERALD

A SYDNEY woman has been awarded a Supreme Court injunction to have her dead husband tested for a disease the Health Department says does not exist in Australia.

Mualla Akinci's husband, Karl McManus, died last Wednesday - three years after he was bitten by a tick she says carried Lyme disease, a bacterial infection which, if left untreated, can cause profound neurological damage.

Mr McManus, 43, from Turramurra, was bitten on the left side of his chest during filming for the television show Home and Away in bushland in Waratah Park, northern Sydney. Within six weeks he lost mobility in one of the fingers on his left hand. That quickly spread to paralysis in his left arm and across to his right arm.

Mr McManus was diagnosed with multifocal neuropathy after testing negative for Lyme disease, but Ms Akinci, a pharmacist, insisted he be tested again at clinics in the US and Germany. Both tests returned positive for Lyme disease.

She argues that Australian tests are inadequate because pathologists looks for antibodies in the blood, rather than for proteins in specific bacteria within tissue.

''Lyme doesn't usually live in the blood. It lives in tissues unless someone's system is flushed with it so it stands to reason that every test will come back negative,'' Ms Akinci said.

The Health Department maintains that no case has been transmitted in Australia and the organisms that cause it - three species of the genus borrelia - are not carried here by wildlife, livestock or their parasites.

The NSW Health Minister, Carmel Tebbutt, said in May there was not enough evidence to support the existence of ticks carrying the borrelia organism.

''Until there is solid evidence to indicate that locally acquired Lyme disease is a significant public health matter in Australia, specific measures to educate the general public or clinicians are difficult to justify,'' she said.

But Tim Roberts, of Newcastle University's school of environmental and life sciences, said that it was becoming more difficult for the government to deny the problem.

''Westmead Hospital [where most testing is performed] categorically says there are no Lyme organisms in Australia, but a significant number of people certainly look like they have the signs and symptoms,'' Associate Professor Roberts said.

His view is supported by Peter Mayne, a GP from Laurieton who says he has 12 patients with the disease. Western blot testing, the standard used in Australia for 25 years, missed most cases because patients on antibiotics did not have antibodies to the disease, he said.

'It is a very, very difficult diagnosis to make in a lab. But I believe it does exist and there are many doctors who agree.''

Last week, hours after Mr McManus died by choking from his paralysed tongue, Ms Akinci sought to have an autopsy performed on his body but was told by Glebe Morgue a backlog of more than 46 bodies meant that was impossible.

''I was also told he had died from natural causes so an autopsy wasn't needed,'' she said.

Ms Akinci then applied to the Supreme Court and was granted permission to have the autopsy done at Royal North Shore Hospital. Preliminary results are expected tomorrow.

''He wanted answers, I want answers,'' she said.


- Flu-like symptoms that appear a few days to a few weeks after the bite.

- A red rash, called erythema migrans, which grows daily and looks like a bullseye with multiple rings.

- Fatigue, low-grade fevers, night sweats, sore throat, swollen glands and stiff neck.

- Memory loss, headache, depression, sleep disturbance and irritability.

- Facial numbness, pain and tingling."

Quoted from website: