KARL MCMANUS FOUNDATION - 2010 Australian LYME launch

KARL’s Story by Mualla Akinci McManus

Karl McManus was bitten by a tick in July 2007 on Sydney’s Northern Beaches. A week later he developed flu-like symptoms but, due to a lack of knowledge about Lyme disease in Australia, the tell-tale signs and potential seriousness of the tick bite were overlooked.

Five weeks later Karl experienced more of the classic symptoms of Lyme disease and also began to lose dexterity in the fingers of his left hand and to get muscle wasting. In November 2007 Karl was misdiagnosed with multi-focal motor neuropathy (MFMN) and given an immuno-suppressive agent which worsened his condition, so the treatment was stopped.

It was not until April 2008, when we sent his blood to a US laboratory and his tests came back positive for Lyme-disease bacteria, that our suspicions were confirmed. However, Karl could not find a doctor in Australia who would care for and treat his neuroborreliosis. Without proper monitoring he continued to deteriorate.

Karl passed away suddenly on 14 July 2010. His decline and death was due to a refusal by the medical system to accept he had Lyme disease and treat him accordingly. He did not want anybody to suffer like him ever again.

Karl’s full story can be found in the Karl’s Story section of this site.

The aim of the Karl McManus Foundation is to erode the barriers to the recognition and treatment of Borreliosis, especially neuroborreliosis, in Australia and to contribute to knowledge in the world about borreliosis and other tick-borne infections.

THE AIMS OF THE FOUNDATION INCLUDE

1. To facilitate research and raise awareness of Lyme disease (borreliosis and co-infections) and other tick-borne diseases in Australia.

2. Advocate for better testing and treatment of borreliosis and co-infections.

3. Educate doctors and other health professionals about Lyme disease (borreliosis) and co-infections in Australia.

4. Use the media to alert the public about Lyme disease (Borreliosis) and co-infections in Australia.

5. Publicise that there is a potential to misdiagnose Lyme (Borreliosis) as many other serious chronic diseases like Parkinson’s disease, motor neurone disease (MND, ALS), multiple sclerosis (MS), Alzheimer’s disease, fibromyalgia and ME/chronic fatigue syndrome and autism.

For a list of the foundation’s Board of Directors please visit the Board of Directors section of this site.

CONTACT US

For more information about the Karl McManus Foundation for Lyme Disease Research & Awareness or for related enquiries please contact:

Mualla Akinci
info@karlmcmanusfoundation.org.au
PO Box 726 Turramurra
NSW 2074 Australia"


Quoted from website http://karlmcmanuslyme.org/

Lyme Disease testing grossly inadequate in Australia

AUSTRALIA NEEDS TO DEVELOP MORE TESTS FOR TESTING LYME DISEASE

Submitted by Ketan Mukherjee on Tue, 07/20/2010 - 16:26

Lyme disease, which is a deadly tick borne disease, is causing havoc for the people of Australia. Last week, a Sydney woman won a court case that allowed her to conduct test on her dead husband to detect if he succumbed to death due to Lyme disease. She asserted that a tick had gnawed her husband three years ago. The test came out to be negative in Australia, but further tests in Germany and the US turned out to be positive.

The symptoms of the disease include fevers and abrasions and if left untreated, can cause serious illness.

As per New South Wales Health Department, there is no assurance that the disease is causing causalities in Australia.

The case has raise skepticism about Australia's inadequate testing methods. But scientists have claimed to discover better tests to examine the presence of Lyme disease in Australia.

One of the many ways to test Lyme disease is to take the sample of the micro-organism from a patient or tick and let it grow by putting it into a culture.

Some scientists claim that the disease doesn't exist in Australia, as there are no traces of infected cases. On the other hand, some scientists reported that the disease does exist, as there are evidences, where people showed symptoms of this disease."

http://topnews.net.nz/content/26370-australia-needs-develop-more-tests-testing-lyme-disease

Coffs Harbour: Mayne shouts about Lyme disease in Australia

When someone shouts loud enough it is hoped they will be heard.

Dr Peter Mayne, a doctor in Laurieton who has a medical practice in the tick capital region of Australia, the Mid North Coast of New South Wales, certainly hopes someone will hear his cry about Lyme disease.

Lyme disease is a well known disease in Europe and North America. It is caused by a spirochete, a type of bacteria, which infects humans in the case of Lyme disease via tick bites from ticks harbouring the specific bacteria. Two other well known diseases of humans caused by infection by specific spirochetes are Leptospirosis and Syphylis.

Dr Mayne steadfastly maintains Lyme disease exists in Australia whereas the Government and its agencies do not. So why the standoff?

It is well known bites from ticks can cause problems to humans. The paralysis tick, Ixodes holocyclus can cause illnesses including paralysis, tick typhus and more commonly severe allergic reactions to the bite. But Lyme disease has generally been ruled out as not possible.

The Department of Medical Entomology unit at Westmead Hospital in Sydney states it clearly;

"Despite clinical cases being reported from the early 1980's, there has been no confirmation that the disease occurs in Australia.”

However, Dr Mayne claims he has thirty patients with the disease and wants other medical practitioners to be on the look out for it too. There has been some debate over the testing for Lyme disease and the symptoms often fall into a wide non specific category which could be assuaged with some Panadol and “ it’s probably a virus” reassurance.

Lyme disease has three stages.

Stage I may have symptoms of fever, fatigue, muscle or joint pain and possibly swollen lymph nodes. Really, what person has not suffered all of these symptoms at some stage in their life and thought nothing of it. The symptoms could present anywhere from a few days to a month after being bitten by a tick carrying the bacterium.

One of the tell tale signs of infection with Lyme disease or what perhaps in Australia is Aussie Lyme disease which will be explained further, is a redness around the bite site, with the bite being the centre, giving a bulls eye like appearance. This is called erythema migrans and is a sign of inoculation by the bacterium Borrelia, the spirochete responsible for Lyme disease. Redness around the bite associated with an allergic reaction will usually resolve so the medical experts say, within a few days and present within a few hours. The reaction caused by infection of the Borrelia bacterium may occur up to a month after being bitten or may not present at all. Erythema migrans occurs in sixty to eighty percent of cases as reported from North America.

Stage II are also non specific and can occur months after the initial tick bite.
“The lesions resemble those of secondary syphilis: carditis, chronic meningitis, mononeuritis (eg Bell's palsy) and conjunctivitis. Arthralgia and myalgia ( joint and muscle pain) are often prominent.”

Stage III symptoms can occur months or years after exposure to the bacterium. In North America the most typical feature is an erosive arthritis of the large joints, the knees in particular. However, in Europe, the manifestation is more likely to present as a skin rash called acrodermatitis chronica atrophicans. To those in the know, this is a typical symptom of Lyme disease.

The fact there are slightly different symptoms in Europe compared to North America perhaps highlights the stance taken by Australian authorities that Lyme disease does not occur in this country. Borrelia is the name of a bacterial group. There are different strains within the grouping. No specific strain of the spirochaete has yet been isolated in Australia and therefore no specific test can be used to test a patient for it. The testing is done based on the strain found in laboratories overseas. Hence the possible reason for the impasse.

From the website of the Department of Medical Entymology at Westmead;

“None of the mammal species identified as reservoir hosts in the northern hemisphere are present in Australia. There are reports of spirochetes in Australian native animals, and a local mammal could be a reservoir host for an indigenous spirochete that occasionally infects humans through a tick vector and produces a clinical syndrome similar to Lyme Disease; however, no spirochete was detected in the 12,000 ticks or animals processed. The existence of Lyme Disease in Australia will remain controversial until an organism is isolated from a local patient and fully characterised, or until a tick-borne organism can be shown to be responsible for the human infection. If it exists it shares few of the epidemiological or clinical characteristics of US or European patterns of Lyme disease.”

Trust us Aussies to reinvent the wheel! Perhaps we should call our version “Corb Lyme Disease!”

Lyme disease, as it is caused by a bacterium, can be treated with doses of specific antibiotics.

Prevention is always better than a cure.

Best methods of prevention as taken from a number of sources including the Health Department of New South Wales are;

• avoid tick infested areas,
• prevent tick bites by using repellents particularly those containing DEET or Picaridin, including spraying on the hat,
• wearing light coloured clothing so ticks can be more readily seen,
• wear long sleeved shirts, long pants tucked into socks and a wide brimmed hat.
• be careful where you throw your clothes when you get home as they may introduce ticks into the house.
• if moving through tick infested areas carefully check yourself for ticks each day especially behind the ears, on the back of the head, groin, armpits and back of the knees. The transmission of the spirochete does not usually occur within twenty four hours of the tick attaching so prompt removal makes perfect sense.
• mow grass in the backyard and keep mulch and leaf litter away from the main entrance to the house.
• trim shrubs overhanging paths and play areas.

Dr Peter Mayne can hopefully stop shouting soon about Lyme disease.

For more information about Dr Mayne and his work try; http://www.drmayne.com/

Quoted from website: http://www.ourpatch.com.au/australia/users/spida/blogs/2617-mayne-shouts-about-lyme-disease

Map Image from: http://www.gideononline.com/2008/05/07/lyme-disease-revisited/

Lyme Disease Confirmed on Mid North Coast NSW Australia

DIAGNOSIS POSITIVE: TICK DISEASE IS HERE - Port Macquarie News (17 Sept 2010)

A LAURIETON doctor says he has “absolute proof” two of his patients have a tick-borne disease that health authorities say does not exist in Australia.

GP Dr Peter Mayne said two of his patients had the bacterial illness Lyme disease.

He urged medical colleagues to keep an eye out for the infection.

“I’ve taken tissue samples at the bite sites, and sent them off for DNA analysis, and they were positive,” Dr Mayne said.

Debate continues about whether Australian ticks can carry Lyme disease.

“There are perceptions that Lyme disease doesn’t exist here in Australia, and the medical profession have been lulled into thinking that they don’t have to worry about Lyme disease,” Dr Mayne said.

In its later stages, the infection can spread through the bloodstream and affect the brain, heart and joints.

Earlier symptoms can include a rash, fever, headaches, tiredness and joint pain.

Lyme disease made headlines this month after an autopsy showed a Sydney man had the disease when he died.

The dead man’s wife planned to launch a class action against NSW Health, The Sydney Morning Herald reported.

Dr Mayne said he had a list of about 30 patients - from Newcastle to Coffs Harbour - with the disease.

It was “incredibly difficult” to diagnose, he added.

The illness is spread by ticks carrying the Borrelia bacterium.

It cannot be passed between people.

A NSW Health fact sheet about the disease says only some ticks can be infected and they are not found in Australia.

Lyme disease is “rare or absent” here, the fact sheet claims.

There may be other similar infections here, it says.

The fact sheet adds that past cases where the disease did occur here involved patients who contracted it overseas.

Lyme disease is common in Europe and North America."

Quoted from website: http://www.portnews.com.au/news/local/news/general/diagnosis-positive-tick-disease-is-here/1944198.aspx?page=2

Lyme Disease in Liver, Heart, Kidney & Lungs - Autopsy (NSW Court Ordered)

WIDOW OF LYME DISEASE VICTIM TO SUE NSW HEALTH - THE AGE

Kate Benson HEALTH
September 3, 2010

A SYDNEY woman will launch a class action against NSW Health after autopsy results showed her husband had been riddled with a disease the Health Department says does not exist in Australia.

Karl McManus, 44, died in July after being bitten by a tick while filming the television show Home and Away in Sydney. The autopsy indicated he had bacteria from Lyme disease in his liver, heart, kidney and lungs.

Samples from his organs, which were tested at the Sydney laboratory Australian Biologics, will be sent to the University of Sydney and to laboratories in the United States for more testing. ''If there is duplication of results, the government cannot dispute [that Lyme exists in Australia],'' his wife, Mualla Akinci, said.

Mr McManus, from Turramurra, was diagnosed with multifocal neuropathy after testing negative at an Australian laboratory for Lyme disease, but tests carried out in the US and Germany returned positive results. NSW Health maintains that the organisms which cause Lyme disease - three species of the genus Borrelia - are not carried here by wildlife, livestock or their parasites.

It says that anyone suffering from the illness must have caught it overseas, but Ms Akinci is adamant Mr McManus was bitten by a Lyme-infested tick in Waratah Park, home of the TV show Skippy, the Bush Kangaroo.

Ms Akinci has the support of two sufferers, and hopes more people will join the class action.

She also plans to sue Hornsby Hospital where her husband was treated before his death, and will appeal a decision by the Health Care Complaints Commission not to investigate his treatment while at the hospital.

A claim for workers' compensation was rejected by insurer Employers Mutual, but lawyers will lodge an appeal once further medical reports are prepared, Ms Akinci said."

Quoted from wevsites: http://www.theage.com.au/national/legal-action-over-lyme-disease-case-20100902-14rob.html

and http://www.brisbanetimes.com.au/national/legal-action-over-lyme-disease-case-20100902-14rob.html

Australian Feral Deer Spread Ticks and Lyme Disease

NO TICK FOR FILMMAKER'S DEER THEORY IN LYME MYSTERY

KATE BENSON
21 Jul, 2010 07:27 AM

It's a mystery that has left the experts scratching their heads.

A film technician, David Roberts, is adamant that a herd of deer roaming wild in Ku-ring-gai National Park was responsible for spreading ticks infested with Lyme disease to his former employee, Karl McManus, during a shoot for Home and Away three years ago.

Mr McManus died last week from complications relating to Lyme disease, a bacterial infection that can cause paralysis and profound neurological damage. He was bitten by a tick during filming at Waratah Park, the former home of Skippy, the Bush Kangaroo.

The federal government denies Lyme disease can be transmitted in Australia, saying the organisms that cause it - three species of the genus borrelia - are not carried here by wildlife, livestock or parasites.

Both Waratah Park and rangers from Ku-ring-gai National Park deny the existence of deer, known to carry borrelia, but Mr Roberts's colleague Brett Wilbe maintains he has seen the animals within 500 metres of Waratah's front gate. He has worked on seven television shows in the area in the past seven years.

''I've definitely seen them when we've had early morning starts. And my father lived in the area in the '60s and he's talked about seeing them.''

Mr Roberts is furious that Channel Seven, the producers of Home and Away, refused to take any responsibility for Mr McManus's illness, saying it knew that crew and cast were repeatedly bitten by ticks on set.

''They were pulling ticks off people day in, day out,'' he said. ''We all got bitten.''

But whether those ticks were feeding on infected deer is in contention. Mandy Beaumont, from the Waratah Park support group, said no deer had ever been kept at Waratah Park. ''I've never even seen any in the area and I've been here more than 40 years.''

A former Skippy actor, Tony Bonner, who filmed at Waratah Park for three years, was also perplexed. ''It's just not deer country,'' he said.

The chief inspector of the RSPCA, David O'Shannessy, said although deer are found in other parts of Sydney, such as the Royal National Park, he was unaware of any in Ku-ring-gai. A spokeswoman from the National Parks and Wildlife Service said she had never seen evidence of them. ''And we'd know. We're out there all the time doing fox baiting.''

Channel Seven did not return calls yesterday. "

Quoted from website: http://theland.farmonline.com.au/news/state/agribusiness-and-general/general/no-tick-for-filmmakers-deer-theory-in-lyme-mystery/1890778.aspx

Image from website: http://www.goldcoast.com.au/article/2011/03/05/297091_gold-coast-news.html

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: http://www.portnews.com.au/news/local/news/general/docs-on-tick-crusade/1890465.aspx

Lyme Disease Victims Speak out in Australia

TICK VICTIMS CONTEST LYME DISEASE STUDIES - The Manly Daily
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: http://manly-daily.whereilive.com.au/news/story/tick-victims-contest-lyme-disease-studies/

Australian's Lyme Disease Testing Inadequate - ABC

CALL FOR IMPROVED LYME DISEASE TESTING
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: http://www.abc.net.au/worldtoday/content/2010/s2958843.htm

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: http://www.smh.com.au/national/lyme-mystery-ticks-all-the-boxes-20100723-10ora.html

NSW Supreme Court grants Lyme disease autopsy

Court grants Lyme disease autopsy - SYDNEY MORNING HERALD
KATE BENSON, HEALTH July 20, 2010

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.


WARNING SIGNS

- 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: http://m.smh.com.au/nsw/court-grants-lyme-disease-autopsy-20100719-10hyx.html

YES LYME DISEASE EXISTS IN AUSTRALIA

Dr Peter James Mayne

1.

LYME DISEASE (Chronic)

Dr Mayne has always had an intense interest in the early initial infection that goes on to cause Chronic Lyme Disease, starting in 1992. This interest was sharpened by the dermatology diploma he did in 2005 in terms of early recognition of the disease and also the unique skin manifestation that can occur much later in the disease.

In October 2009 he was approached by a patient who was quite desperate with an advanced presentation after 102 tick bites in one day some years before. Her treatment (specialist directed) was failing after some initial success. Could he help? Could he take on the task of up skilling himself in this sad neglected area of medicine in Australia, where most doctors don't believe the disease exists?

The many pages to follow explore these questions with remarkable findings for both patients and doctors. For the latter this will be mainly for the medical gatekeeper, the patients GP. It is not intended that a patient will necessarily be able to understand the information presented within for doctors.

LYME DISEASE - FOR PATIENTS
LYME DISEASE - FOR DOCTORS
WANTED DOCTORS WHO HAVE HAD ERYTHEMA MIGRANS OR LYME DISEASE Either contracted in Australia or overseas - please email me at LMC@medemail.com.au

2.

LYME DISEASE INFORMATION FOR DOCTORS IN AUSTRALIA

Lyme disease in Australia can now be proven by nested PCR to both

Borrelia burgdorferi (Bb)
and Borrelia Garinii (Bg)

2 Proofs on this link, one by blood the other by tissue

ILADS The International Lyme and Associated Disease Society

Here is the main link to the society
http://www.ilads.org/

and this link is their treatment guidelines page
http://www.ilads.org/files/ILADS_Guidelines.pdf

A key Board member of ILADS is Joseph Burruscano MD a physician. He is the author of

"Advanced topics in Lyme disease"

The 2005 edition is available free on the net at ILADS
http://www.ilads.org/files/burrascano_0905.pdf

The 2008 edition you will have to pay for. I will be using information from the 2008 edition only, so sometimes it may not be in the 2005 edition.

I am going to attempt to give a brief overview on Lyme information. The topic is vast with many tangents and it takes very many hours to integrate this information into a sensible synthesis. I will heavily rely on the above information. Medical Practitioners have enough to do without taking on this subspecialty with its extreme time consumption, unless particularly motivated to learn more. The aim is to arm you with enough information to suspect this diagnosis.

Please follow these links
The precursor erythema migrans. Diagnosis and management from a
dermatological viewpoint.

The disease and its Co-infections. What we are seeing in Australia.
Patient History
Making the diagnosis - a clinical one
Confirmatory Lab tests
Treatment principles and options
Monitoring for successful treatment
Is there an endpoint?"

3.

ERYTHEMA MIGRANS - Its Diagnosis and Treatment

From a dermatological viewpoint this illness is very poorly identified by Australian General Practice. I have to admit I was one of those before 1992.

Forget the classic bulls eye - if you see one of those good luck to you. Borrelia infection following a tick bite is slow to develop, usually taking some 48 hours to produce erythema. Bear in mind your patient probably hasn't noticed it in this time if in less obvious places.

Unfortunately a large majority of bite reactions are described as ALLERGY in Australia. This is rather woeful. An urticarial rash of any description must be gone completely in 24 hours. Even if another forms. That is the fundamental definition of acute urticaria. Now your patient might have a local toxic reaction as in most insect bites, or even a small round induration suggesting trivial infection.

BUT if the lesion around the bite is more than 2cm and persistent more than 2 days then in our country it is either

BORRELIA INFECTION or

QUEENSLAND TICK TYPHUS

And definitely not ALLERGY.

Please review this brief CASE HISTORY presented at Cardiff University in 2004 regarding the distinction.

Induration is also a marked feature and if you remember the early phase of a BCG reaction then it is hard like that.

Removal of a tick within 24 hours is believed to prevent infection with Borrelia, but best within 12 hours.

Safest course of action is to prescribe the correct antibiotic immediately at presentation no matter how long after a tick bite. The case history reviews the use of tissue PCR but also recently I have found sampling the bite site after removal of the tick can return a positive PCR to Borellia
Treatment protocol (ILADS 2008)

Adults the standard is 200mg doxycycline for 28 days, alternatively amoxil 1gm tds for 28 days
Children Amoxycillin at standard dose for age 28 days
In pregnancy use erythromycin 500mg qid for 28days"


4.

DISEASE PRESENTATION

What I see in practice

Two strains of Borrelia are positively identified in the practice case load, Burgdorferi and Garinii. As to whether there is any difference in symptomatology I can not comment. The former is the predominant organism.

There is no arthritic disease as in North America. Rather we follow a disease pattern of marked neurological symptomatology which is the European and Asian pattern of the disease. There is also a biotoxin (refer Burruscano document) produced by the Borrelia which produces sometimes marked asymmetric muscle spasm and twitching. Cranial nerve involvement followed by upper cervical nerves accounts for most symptomatology.

In the same way as AIDS reduces the C3-8 cells there is a specific marker for Lyme disease CD57 (Burruscano again). Only Lyme disease suppresses this marker and like AIDS there is a marked propensity to harbour other important chronic infections in this state.

In practice I am finding Mycoplasma and Chlamydia Pn in a majority of patients. In the US there is quite a long list but I will just present these two here. It is most essential to look for these in every suspect case of Lyme disease. Even the standard IgG and M markers can be negative but the PCR's will be positive.

These infections are called Co-infections and most are believed to be transmitted with the tick bite."

5.

PATIENT HISTORY

A striking feature of Lyme disease is that a lot of patients either don't recall ever having a tick bite or report yes they have had a tick bite in the distant past and removed it themself or had it removed. These patients are not able to describe ever having the large local reaction after a bite that we know as erythema migrans.

The number of of doctors seen and the number or diagnosis made will be proprtional to the time interval of chronic symptoms. I had one at 7 years and another at 10 years. The last had a very impressive list of medical attendances but no mention of possible Lyme disease. She found her diagnosis herself on the Net. Past diagnosis will often revolve around CFS and fibromaylgia. This of course is not to suggest that Lyme is the fundamental underlying cause of these conditions.

Cardinal symptoms of Lyme Disease
Lethargy
Swollen glands – particularly neck
Sore throat
Thoracic wall pain
Dyspnoea
Cough
Myalgia
Muscle spasms- tetany type or twitching
Muscle cramps
Occulomotor abnormalities particularly with retro orbital pain. Also lateral object fixation at speed painful or impossible. Also can induce nausea like nystagmus reaction.
Hyperacusis
Headache
Creaking neck +/- stiffness

Common
Pyrexias – more at night
Abdominal pain
Palpitations
Paraesthesia
Facial paralysis (Bell’s Palsy)
Visual deficit

Less Common
Tinnitus
Vertigo
Imbalance
Gait disturbance
Arthralgia

More general symptoms

Presyncope, tremors, confusion, disorientation, disorientation, memory loss, mood changes, depression, insomnia, irritability"

LINKS TO OTHER PAGES
Making diagnosis
Confirmatory lab tests
Treatment options
Monitoring
Endpoint
Proofs


Dr Peter James Mayne

MBBS Sydney University 1973
DPD (Dermatology) Cardiff University 2005
IDD International Dermoscopy Diploma Graz University 2008 - Distinction
FACRRM Fellow Australian College Rural and Remote Medicine
Certificate Course Diabetes Management Monash University 2000
Honorary Tutor Dept Medicine Cardiff University (Dermatology and Dermoscopy)

Our Contact Information
Telephone 61 2 65599277
FAX 61 2 65597344

Postal address
89 Bold St Laurieton 2443 NSW Australia
Electronic mail
General Information and
Reception e-mail:
frontdesk.LMC@medemail.com.au
Dr Mayne LMC@medemail.com.au

Lyme pages are under development over many months from March 2010
Last update 10th July 2010"

First quote from website http://www.drmayne.com/Lyme.htm

Second quote from website http://www.drmayne.com/Fordoctors.htm

Third quote from website http://www.drmayne.com/em.htm

Fourth quote from website http://www.drmayne.com/disease_presentation.htm

Fifth quote from website http://www.drmayne.com/patient_history.htm

Lyme Disease? Travel to US to treat Australian Tick Bourne Illness (ABC)

14 May, 2010 1:15PM AEST
Lyme disease?
By Pam MacIntosh

Natalie and her three year old daughter Matilda have been diagnosed with the disease

According to the Health Department Lymes disease does not exist in Australia but for Natalie Young of Coffs Harbour it certainly does.

Natalie and her three year old daughter Matilda have been diagnosed with the disease via tests carried out in the United States but are frustrated and fearful of ongoing medical implications because they cannot get a confirmed diagnosis of the tick-borne disease in this country.

This is because a large section of the medical fraternity believes it does not exist in Australia.

Stephen Graves, the director of microbiology at the Hunter Area Pathology says "Lyme disease is a bacterial infection that is transmitted to patients by the bite of an infected tick".

He says people will usually "get an early skin reaction and depending on the patient it can be an acute illness and they get over it or it can go on to become a chronic illness where they get involvement of the joints and heart and neurological system and people can even finish up with a chronic fatigue syndrome type illness associated with chronic Lyme disease".

Apparently in North America and Europe it is quite a common disease but in Australia there is a big there is a question mark over whether it is even here or not.

Dr Graves says "there are two schools of thought about Lyme disease. There's the majority school of thought that it doesn't occur here but of course one should keep an open mind one may be wrong, the other school of thought of which there are few proponents are that it does occur here, so when you are in this particular situation it's hard for the patient because they've got one group of Dr's who think this and another group of Dr's who think that. But clearly they've got something wrong with them, if it's not Lyme disease its something else and it needs to be diagnosed and it needs to be treated, so I have a great deal of sympathy for them".

Natalie believes she contracted the disease through being bitten by hundreds of ticks when she worked as a National Parks and Wildlife Service officer.
She says the signs first appeared 6 to 8 months after she was bitten in 2002 with aching in her joints followed by anxiety attacks.

As a bush regeneration officer with national parks she continued to be bitten by ticks and following the birth of her daughter her symptoms became more apparent.
Natalie is finding it difficult to find paediatric treatment for her daughter and it seems they may have to go to the United States to seek assistance."

Quoted from: http://www.abc.net.au/local/stories/2010/05/14/2899629.htm?site=northcoast

Aussie's Battle for Lyme Disease Recognition & Treatment - Sydney Morning Herald

BATTLE AGAINST DISEASE - AND SCEPTICISM
May 8, 2010

Recognition, then treatment... Natalie, Matilda and Steven Young. Photo: Frank Redward

Officially, the illness stalking a family does not exist here, writes Julie Robotham.

THE soles of Matilda Young's feet hurt and she has trouble catching her breath after her frequent coughing attacks. At night, she drenches her bed with sweat.

But the disease with which the three-year-old has been diagnosed does not exist in Australia, according to the Health Department, leaving Matilda and her parents alienated and battling for recognition and treatment.

The Coffs Harbour family is at the sharp end of an academic battle over Lyme disease, a bacterial infection spread by ticks, which causes fever, headaches and a rash and can travel to the joints, heart and central nervous system if untreated.

Officially, 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.

But the Youngs - mother Natalie has also tested positive and and father Steven's test was equivocal - confound that dogma because they have not been to the United States or Europe, where Lyme is common.

Ms Young believes she was infected while working as a field officer for the National Parks and Wildlife Service. ''I was 100 per cent in the bush. I did a lot of bushland regeneration stuff,'' said the 34-year-old, who can no longer work.
She estimates she has had more than 300 tick bites. On one occasion in 2002, she was bitten 110 times.

The Youngs believe Matilda, diagnosed last week, was infected during pregnancy, though experts say this is unlikely. ''I've done this to my own child and it's terrible,'' said Ms Young. ''I've been bawling my eyes out, thinking, 'What have I done?'''

But Stephen Doggett, a senior scientist at Westmead Hospital's Department of Medical Entomology, remains sceptical. ''There's not one piece of scientific evidence to say it occurs in Australia,'' he said. ''There
are reputations built on the existence of Lyme disease in Australia. People are embarrassed … to admit it's not here.''

He said positive results came from tests performed using techniques not sufficiently specific to borrelia - people might be infected with a different organism. The bacteria live inside the host's cells so they cannot be independently cultured - testing instead looks for antibodies or borrelia DNA. The Youngs have had both types of test, at laboratories here and overseas.

Andrew McDonald, the NSW parliamentary secretary for health, advised Mr Young to have his positive sample retested at ''a reference laboratory … using appropriate methodology''.

The Health Minister, Carmel Tebbutt, wrote to Ms Young that the relevant species ''have not been isolated in surveys of ticks collected in south-eastern Australia. 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.''

But Tim Roberts, from Newcastle University's School of Environmental and Life Sciences, says positive tests should not be dismissed, because patients' symptoms usually tallied with a history of tick bites.

''I think it's likely to be in some reservoir species in Australia,'' he says. ''If we look hard enough we'll find it. It's always difficult to get a new disease recognised.''

Associate Professor Roberts said some doctors resisted the idea of Lyme disease because treatment required antibiotics, often taken long-term - anathema to clinicians trained to prescribe them sparingly to prevent the spread of antibiotic-resistant bacterial strains.

Stephen Graves, the director of microbiology at the Hunter Area Pathology Service, said he had enormous sympathy for people like the Youngs, faced with a positive diagnosis that was then denied by doctors.

''Medicine's not all-knowing,'' he said. ''The majority school of thought is that there is none but … absence of evidence is not evidence of absence. My position at the moment is that it's not here but I'm happy to change my mind. If you get a patient who clearly has Lyme disease that settles it, doesn't it?''

Natalie had hundreds of tick bits as a National Parks and Wildlife Service officer."

Quoted from: http://www.smh.com.au/nsw/battle-against-disease--and-scepticism-20100507-ujot.html

Bartonella