September 2011:: National Lyme Disease Appeal innaguration in Australia

Karl McManus Foundation::For Lyme Disease Research and Awareness

LYME DISEASE:: The Facts in Australia leaflet can be downloaded from the Karl McManus Foundation Website where you can find out more about Lyme disease:

karlmcmanusfoundation.org.au

KARL McMANUS FOUNDATION
PO Box 3129, North Turramurra NSW 2074

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EXPERTS GIVE TIPS ON TICK-BORNE ILLNESSES (North Shore Sun Times Review 6 Sept 2011)

Written by Jo-Ann Robotti in Featured Stories, Health, Lifestyle, News

PART I
Bitten by a tick as a child during a summer stay in Bridgehampton, Ally Hilfiger began experiencing full-blown flu-like symptoms and joint pain by age seven. Over the next 11 years, she was diagnosed by different doctors with diseases ranging from arthritis to fibromyalgia and multiple sclerosis.

“I spent a lot of my life in what is called the Lyme Fog,” Ms. Hilfiger told an audience of 100 people attending a forum on Lyme and other tick-borne diseases in Sag Harbor last Friday. “Nothing helped with the pain or the disorientation.”

At age 19, she saw a psychologist in Connecticut who said “this sounds like Lyme.” Earlier blood tests for Lyme, she recalled, had been “marginal or inconclusive.” With this diagnosis, however, “which included a co-infection” with babesiosis, she embarked upon a seven-year regime of antibiotics and IV drips.

She has been symptom-free for the past year. “I believe I went through this so I can stand before you and spread this message,” she said. “You must be an advocate for this disease. You must also know that tests can be wrong and doctors can make mistakes. You know your body and when things aren’t right you need to trust your instincts.”

The forum, “Lyme Disease in the Hamptons — What You Need to Know,” was presented by Time For Lyme, Inc. on August 19 at Bay Street Theater. Four panelists provided detailed information on the disease, including updates on the latest research, common misconceptions, prevention strategies and a personal story of mis-diagnosis.

Time for Lyme is a non-profit organization based in Greenwich, Connecticut, the mission of which is to fund and promote outreach for Lyme and other tick-borne diseases. According to co-founder Diane Blanchard, the group is dedicated to increasing awareness of the diseases through education and prevention programs.

The purpose of Friday’s program, Ms. Blanchard told the audience, was “to introduce you to some very important resources right here in your own community.”

The panelists included George P. Dempsey, M.D., a family practioner in East Hampton who has been studying Lyme among his East End patients since 2000; Darin G. Wiggins, M.D., chairman of the Department of Emergency Medicine, Southampton Hospital; Benjamin J. Luft, M.D., an academic physician, researcher and chairman of the Department of Medicine at Stony Brook State University, who is involved in research on the disease; and Ms. Hilfiger, the Time for Lyme spokesperson who told of her long struggle with the disease. The panel was moderated by Dr. Luft.

“My goal is to make Lyme disease manageable for those who live out here,” said Dr. Dempsey. While Lyme was first diagnosed in 1975 in Lyme, Connecticut, Dr. Dempsey said that records show that a Dr. John Walker wrote about Lyme-like symptoms on an island off the coast of Scotland in 1764. And Pliny the Elder, who lived between 23-79 A.D., wrote “Ticks: the foulest and nastiest creatures that be.”

CO-INFECTIONS COMMON

There are now some 10 tick-borne diseases that have been identified and at least 32 percent of infected ticks carry more than one pathogen, making co-infections like Ms. Hilfiger’s very common, Dr. Dempsey said. Spring is the most active time for nymphs and is the time, he said, “when we see the most disease.” Nymphs tend to be down low, in leaf mulch and other warm, moist areas. Adult ticks, on the other hand, are capable of jumping and are often found in high grass or on animal trails. “They have a highly developed sense of smell and wait for an animal, such as a deer, to come by and then jump on it.” In general, ticks do not like dry environments, windy settings, beaches, rocks and pebbles, which is a good list of landscaping “do’s” that will help minimize the tick population on a property.

Through his highly graphic slides, Dr. Dempsey sought to reassure the audience that “not every insect bite is a tick bite and not every tick bite carries disease.”

A tick bite rash usually doesn’t hurt, it is not that itchy, the area tends to be warm and the bite site gets progressively larger. “If the rash lasts more than two or three days and is larger than a silver dollar, then it could be a tick,” he said. While the bull’s eye rash is believed to be the hallmark of Lyme, Dr. Dempsey was quick to point out with slides that there is a wide range of rash-like manifestations.

PART II

This is the second installment of a two-part account of a forum on tick-borne illnesses in Sag Harbor on August 19 at the Bay Street Theatre. The forum, “Lyme Disease in the Hamptons — What You Need to Know,” was presented by Time For Lyme, Inc. The four panelists were Time for Lyme co-founder Diane Blanchard; George P. Dempsey, M.D., a family practioner in East Hampton; Darin G. Wiggins, M.D., chairman of the Department of Emergency Medicine, Southampton Hospital; Benjamin J. Luft, M.D., chairman of the Department of Medicine at Stony Brook State University.

Through his highly graphic slides, Dr. Dempsey sought to reassure the audience that “not every insect bite is a tick bite and not every tick bite carries disease.”

A tick bite rash usually doesn’t hurt, it is not that itchy, the area tends to be warm and the bite site gets progressively larger. “If the rash lasts more than two or three days and is larger than a silver dollar, then it could be a tick,” he said. While the bull’s eye rash is believed to be the hallmark of Lyme, Dr. Dempsey was quick to point out with slides that there is a wide range of rash-like manifestations.

“We don’t see a lot of classic bull’s eye, but splotches and blotches, some faint, some dramatic. There is a new theory emerging that says that different strains are producing different rashes which can certainly complicate the diagnosis.” Again, he emphasized that the thing to be aware of is a rash that changes and enlarges over time.

STAGES OF THE DISEASE

Darrin Wiggins graduated from Columbia University College of Physicians and Surgeons, completed his internship and residency from the Medical College of Pennsylvania and is board certified in emergency medicine. He often returns to his alma mater to lecture on Lyme and other tick-borne diseases. “The students at Columbia teach me about guns and knives and I teach them about ticks,” he said. “But it’s a little like teaching them about mythical creatures; they don’t believe they exist.”

Echoing Dr. Dempsey’s remarks, Dr. Wiggins stated that “avoidance and prevention is 90 percent of the battle; if you don’t get bitten, we don’t have to treat you.” But people out here do indeed get bitten. A half of one percent of Southampton Hospital’s 24,000 emergency room visits are tick-related, or put another way, one case every other day, he said.

Lyme can be broken into three stages, he said: Stage I is easily diagnosed and treated and involves a localized infection; 50 percent of Stage I patients have flu-like symptoms, others have no symptoms at all. In Stage II, the disease begins to infect other organs and facial palsy may result. Stage III is late, untreated and may result in cardiac issues.

“In Southampton, a facial palsy automatically signals Lyme unless proven otherwise. Southampton lab personnel are trained in parasite readings and we get two independent lab techs to read each test,” Dr. Wiggins explained. In addition to Lyme, the hospital frequently sees anaplasmosis and ehrrlichiosis, both of which are reliably diagnosed with blood tests, and babesiosis, now dubbed “Long Island malaria” because it causes fever, chills, sweats and rigors.

Finding a “tiny little tick” on your body usually means that there is no disease, Dr. Wiggins asserted. “As they feed, they grow. It’s the big ones that have become engorged that you have to worry about.” Nymphs are less likely to be infected but more likely to cause Lyme because you don’t see them. “Adults are more likely to be infected but more likely to be found.”

BLOOD TEST UNCERTAINTIES

Benjamin Luft, the program’s final presenter, brought the focus around to the future. “This is a continuously emerging and diverging disease,” he said. “Complicating its diagnosis is the fact that no sub-specialty has developed to deal with this complex disorder. It’s like the parable of the blind men and the elephant: each specialist that you consult sees — and treats — something different.”

Dr. Luft’s research into the molecular biological structure of antigens of the Borrelia species, known to cause Lyme disease throughout the world, is aimed at developing sensitive, specific and user friendly diagnostic tests, as well as the development of possible vaccine candidates. The gold standard in testing would be “like a home pregnancy test for Lyme,” he said. It would be widely available, easy to use, inexpensive and reliable.

“The current blood tests are only accurate 30 to 70 percent of the time. Or put another way, they are inaccurate 30 to70 percent of the time. That level of accuracy is unacceptable. If all diagnostics were that unreliable, we’d all stop seeing doctors.” Dr. Luft’s research, which Time for Lyme has helped support, has led to the development of a vaccine that is currently in human trials in Europe.

The program concluded with a question and answer session. According to Dr. Dempsey, it is “not clear that this disease is ever completely eradicated” in the body and “the level of diagnosis and care is highly dependent upon the locale where you are treated.” Places such as the East End and Connecticut are more likely to have medical personnel who are knowledgeable about tick-borne diseases, increasing the chances of early diagnosis and treatment.

While opinions differ as to how aggressively to treat patients with antibiotics, Dr. Luft said that “one always needs to weigh the risk of treatment with the risks of the disease. Some patients are willing to adopt a wait and see attitude, others are not.” In the end, however, he said, “the only wrong course of action is for a doctor to blow it off.”

In sum, all panelists agreed that awareness is the most powerful preventative tool that currently exists. “Ticks love to hide out in creases and warm, wet areas,” said Dr. Luft. “After you’ve been outdoors, enlist your nearest and dearest to examine behind your knees, your groin, your crotch, hair line and armpits.”

Dr. Dempsey concurred. “We like to say that the bite you see is not the one that gives you the disease. It’s the one you don’t find that will make you sick.”

The Time for Lyme website (timeforlyme.org) has extensive information about tick-borne diseases, including guidelines for tick removal, disease signs and symptoms, diagnostic, testing and treatment issues and prevention tips, as well as information on current research projects."

Quoted from website: http://northshoresun.timesreview.com/2011/09/17190/part-2-experts-give-tips-on-tick-borne-illnesses/

Image from website: http://www.google.com.au/imgres?q=tick&um=1&hl=en&sa=G&biw=840&bih=449&tbm=isch&tbnid=SbyFSqsqWNs-BM:&imgrefurl=http://www.bayeranimal.com.au/default.aspx%3Fpreview%3Dtrue%26page%3D136&docid=doY7F4ENpTlopM&w=675&h=249&ei=A7lqTvSJI6aaiQfFuLTLBA&zoom=1&iact=rc&dur=479&page=2&tbnh=56&tbnw=151&start=8&ndsp=8&ved=1t:429,r:3,s:8&tx=65&ty=33

TICKED OFF IN AUSTRALIA OVER LYME DISEASE

LYME DISEASE: PRESTON WOMAN TICKED OFF (LOCAL NEWS - 4 Sept 2011)
Written by Suzanne Robson

A PRESTON woman diagnosed with Lyme disease is calling on the State Government to fund research into the controversial tick-borne disease.

Renee Loricchiella, 32, (pictured) said she suffered years of chronic pain, rashes and neurological problems, having become unwell after a holiday to Malaysia in 2007.

In September last year she was admitted to hospital for six months after vaccinations triggered chronic abdominal pain and numbness in her legs and face.

“I have spent over $90,000 since September and seen over 70 doctors. They thought it could be fibromyalgia, or a pain syndrome or multiple sclerosis,” Ms Loricchiella said.

This year Dr Peter Mayne, a member of the International Lyme and Associated Disease Society, diagnosed her with the disease.

Ms Loricchiella said antibiotics prescribed by Dr Mayne were slowly working; so she could put her energy into helping others with the disease.

Critics have called on the Government to investigate the disease, including whether it can be locally transmitted.

State Health Department spokesman Bram Alexander said it was not a “notifiable condition” in Victoria.

He said anyone going to areas where the disease was known, such as the US or Europe, should take measures to avoid tick bites.

This month Australia’s inaugural Lyme Disease Appeal will be held by the Karl McManus Foundation to raise money for the research and prevention of the disease.

To donate, visit karlmcmanusfoundation.org.au

© 2011 News Community Media

http://northcote-leader.whereilive.com.au/news/story/really- ticked-off-in-preston/

Quoted from website: http://www.mdjunction.com/forums/lyme-disease-support-forums/lyme-disease-activism/3031177-lyme-disease-preston-australia-woman-ticked-off

Lyme misdiagnosed (CFS, MS, Arthritis, Bell’s Palsy, SLE)

RARE DISEASE FROM TICK BITE (KNOX LEADER NEWS - 6 September 2011)
Written by Zoe Lewis

Rhonda Murphy has battled Lyme disease since 2004, although it took four years before she was diagnosed with the condition.

WHEN Rowville mother-of-three Rhonda Murphy was bitten by a tick in 2004 while on holiday in Scotland, she had no idea it would leave her sick for the rest of her life.

Although she didn’t know it at the time, Mrs Murphy had contracted Lyme Disease and after arriving home developed meningitis, Bell’s Palsy and severe eczema - all symptoms of the condition.

>>TELL US: Have you ever had complications from insect or tick bites?

She said she was constantly sick, but doctors looked at the symptoms in isolation.

Over the next few years, she was put on antibiotics and told by doctors she had chronic fatigue syndrome and a similar condition called fibromyalgia.

“I felt like a hypochondriac,” Mrs Murphy said.

A gastroenterologist finally gave her a blood test that was positive to the disease, but despite treatment, her condition did not improve.

She was told about treatment clinics in Germany and the US, and with the help of a local doctor sent blood tests away and received medication to treat the disease.

Mrs Murphy, 56, said Australian doctors needed to be more aware of the disease and more willing to treat it.

She has spent more than $200,000 on treatment and said she was now “90 per cent in remission”, but still took medication and used holistic therapies to control symptoms.

The former teacher and curriculum co-ordinator said she would not be able to work again.

She said if someone was diagnosed within a month of being bitten, a course of antibiotics could cure Lyme Disease, but symptoms of the condition varied for each person, making diagnosis hard.

This month sees the launch of the inaugural Lyme Disease Appeal, to raise money for the Karl McManus Foundation for Lyme Disease Research and Awareness.

Mr McManus was diagnosed with the disease after being bitten by a tick in Sydney in July, 2007 and died last year.

The foundation is aiming to raise $1 million to fund a research centre at Sydney University.

Details: www.karlmcmanus foundation.org.au"

Quoted from website: http://knox-leader.whereilive.com.au/news/story/tell-us-rare-disease-from-tick-bite/

Victorian Mum warns children at risk of Lyme - HERALD SUN

MUM SAYS DELAY IN DIAGNOSING INSECT BITE ILLNESS PUTS CHILDREN AT RISK
Written by Marianne Betts (20 July 2011)

Ailing mum Sherryn Jackson with daughters Caprice, Anneka and Janaya.

A MUM is angry it has taken years for her to be diagnosed with a rare and life-threatening disease, which she may have passed on to her children.

Had Sherryn Jackson been immediately diagnosed with Lyme disease after suffering a tick bite, she says she would not have risked transmitting it to her daughters during pregnancy.

Her NSW GP, Dr Peter Mayne, said he'd diagnosed 20 Victorians with the infection in the past year, but it remained largely unrecognised by Australian health authorities.

Victorian health department spokesman Bram Alexander said the tick responsible for transmitting Lyme disease was not believed to exist in Australia.

"However, if doctors are diagnosing this condition in Victorians we would be very interested in investigating this further," he said.

Dr Mayne said Lyme disease was a bacterial infection that appeared long after a tick bite, and could be cured with antibiotics.

Ms Jackson said she was bitten in Shepparton seven years ago when carrying her first child. The bite vanished after a couple of months, but five years later she began to feel unwell.

"Weird things started happening ... I started getting dizzy spells, I developed balance, co-ordination and speech problems, and headaches," Ms Jackson said.

Many doctors had examined her, blaming an allergy, imaginary symptoms, and possibly multiple sclerosis.

Dr Mayne diagnosed her with Lyme disease last week, and she was awaiting US tests for further details.

She believes at least one of her three daughters contracted the disease from her.

Janaya, 4, has been plagued by health problems, and was admitted to hospital last year with encephalitis, a brain inflammation common in children with Lyme disease. Her twin, Caprice, has had eye problems.

"I'm angry. It should have been picked up. I'd have had three months of antibiotics, and I wouldn't have become sick, and my children wouldn't be sick," Ms Jackson said."

Picture and quote from website: http://www.heraldsun.com.au/news/more-news/mum-says-delay-in-diagnosing-insect-bite-illness-puts-children-at-risk/story-fn7x8me2-1226097836338

NSW Government admits import risk and cannot rule out locally attained Lyme

"In April 2011, NSW Health convened an expert panel with expertise in public health, epidemiology, infectious diseases, rickettsial diseases and entomology to provide advice on the current risk of Lyme disease in NSW. The panel concluded that although locally-acquired Lyme disease cannot be ruled out, there is little evidence that it occurs in Australia. The panel also noted that there was a continuing risk of overseas-acquired Lyme disease being imported into NSW."

Above except from NSW Health Factsheet quoted from website: http://www.health.nsw.gov.au/factsheets/infectious/lyme_disease.html

*** The following Worker's Compensation Case below is for information purposes only and it's contents or opinion on Lyme existence in Australian ticks doesn't align with my own views on such matters. It does however demonstrate yet another case of Lyme Disease in Australia regardless of origin or responsibility.
Further research to provide adequate testing and treatment of all Australian is desperately required.***

"TICK" - ING BOXES: CONNECTING AN INJURY TO AN EMPLOYER

The Background

A tick bite can be a nasty thing – in particular, the possibility of contracting the potentially very dangerous Lyme disease. In the short term, Lyme disease causes fever, headache, depression and a skin rash called Erythema migrans. However it’s the long term you really want to be worried about. Left untreated, Lyme disease can result in severe chronic symptoms in major organs, such as the brain and the heart – sometimes even resulting in permanent paralysis.

Of course, the details of this serious infection were the furthest thing from a marketing/customer service manager’s mind when he took a work trip to Germany in 1993. As part of his trip his visited the famous Black Forest several times. Unfortunately for him, he was bitten by a deer tick and unknowingly contracted the disease. In 1996, three years after his visit to Germany, the then-32-year-old suffered a stroke and paralysis from apical mural thrombus in an enlarged heart. He also developed epilepsy. By 1997, he required a heart transplant. In 1998 he discovered small pimple like-lesions on his body, and by 2004, he had a serious skin condition covering his right flank and armpit. A skin-punch test determined that he was suffering from late-stage Lyme disease. While it is unlikely that Australian ticks carry the bacteria which cause the infection, the Black Forest is a known hot-spot for the tiny parasites that do.

The Claim

The worker was unable to return to work after his stroke in 1996. In 2007, he made a claim pursuant to the Accident Compensation Act 1985 (Vic) against his employer, Wurth Australia Pty Limited. Wurth rejected the claim on two bases: first, that it did not arise out of or in the course of employment; secondly, that the employee’s employment was not a significant contributing factor to the claimed injury.

The Decisions

In 2010, a medical panel of a Victorian County Court found that the workers cardiac dysfunction, stroke, epilepsy and skin lesions were a result of the Lyme disease contracted during the course of employment.

Wurth applied for a judicial review of the medical panel. The grounds on which they requested the review centered around two points – firstly, that a jurisdictional error had occurred in that the medical panel had relied on “inaccurate factual material” in the form of accepting ‘a small number of cases histologically proven Lyme related cardiomyopathy’ had been reported, even though its research had only uncovered one such case. Justice Macaulay rejected such an argument.

Secondly, Wurth argued that they had not been allowed procedural fairness as they weren’t given adequate reasons for its decision, and the company hadn’t been provided with an opportunity to be heard on certain critical medical issues that were before the panel, but which it had allegedly not been advised. However his Honour deemed that the panel had carefully considered all other possible causes for the worker’s conditions.

The application for a judicial appeal was dismissed.

What should employers take away from this tale of parasites, paralysis and procedural fairness?

Well it should certainly be noted that even while participating in seemingly ‘recreational’ activities on a work trip, the employer can still be held liable for injuries sustained. Employers should ensure that employees away on business trips are aware that non-work related recreational activities (especially ones with high-risk factors, such as skiing, watersports and adventure sports) are not advised and are at the employees own risk.

Employers should have a clearly written policy covering permitted and not permitted conduct whilst employees are away from the office for business purposes.

Employers should also ensure that such a policy is regularly communicated to all employees.

Quoted from website: http://www.workplacelaw.com.au/cms/content/view/211/36/

Lyme Experts & Sufferers shed Lyme Light on Australia's 'GoodWeekend'

BAD BLOOD (Sydney Morning Herald - 11 June 2011)
By Fenella Souter

Tick-borne Lyme disease is curable, but left untreated can become crippling. The government insists it doesn't exist here, yet a growing number of Australians are convinced they have it, and some experts are prepared to back them up. Fenella Souter investigates.

If grief and loss crush some people into mute acceptance, Mualla Akinci McManus isn't one of them. Small and rather fierce, Akinci McManus is like a fast-talking, low-slung avenging angel, and what she lacks in height she makes up for in blunt determination.

Since her husband, Karl McManus, died in July last year, she has been on a mission to prove that Lyme disease, or a Lyme-like disease, passed to humans by infected ticks, exists in Australia and led to her husband's death. Hundreds, perhaps thousands, of Australians suffering from a constellation of mysterious, painful and debilitating symptoms following tick bites agree with her and say they're being denied treatment because doctors tell them they can't have the disease. Early treatment with antibiotics can generally stop the illness in its tracks, while delay can allow it to progress, invading, in severe cases, every organ in the body.

Health authorities insist there is no "conclusive evidence" that Lyme disease occurs in Australia: few people have tested positive in government-approved labs, and our ticks haven't been found to carry the Borrelia bacteria that cause Lyme (which is more correctly known as Lyme borreliosis). Still, the last government-funded research that looked for Borrelia in Australian ticks, and failed to find it, was undertaken 17 years ago.

Nothing about Lyme disease is simple. As one US Lyme website argues, there isn't a disease in the past 100 years that has polarised the medical community more than this one - and that's in a country where its existence has been officially recognised for decades. For a start, Lyme can be a notoriously difficult disease to diagnose accurately. The bacteria, or its antibodies, often fail to show up in blood tests, depending on the stage of the disease; it can hide in other parts of the body; false negatives or false positives are common, especially in places where the disease is rare. In known Lyme areas, controversy rages about whether it's being over- or under-diagnosed. There are warring schools of thought about the best treatment. There's division over whether there's such a thing as "chronic Lyme disease": some say the illness from this slow-reproducing bacteria can continue for years, and require years of sophisticated antibiotic treatment; others argue there's no such thing as chronic Lyme and that taking antibiotics long-term is dangerous.

The first reported case in Australia, based on clinical symptoms, was reported from the Hunter Valley in NSW in 1982, and there have been a number of anecdotal cases since, mostly from eastern coastal Australia, where ticks are rife.

Is it here? The NSW Health Department acknowledges that occasionally tests here for Lyme have been positive, but claims those people were found to have picked up the infection overseas.

Anyone who has merely visited an overseas country where Lyme exists - from Japan to the UK - will have trouble proving they caught Lyme here. Indeed, the McManus case is complicated by the fact that the couple went to Italy and Germany a few weeks after Karl was bitten here by a tick, although his widow says they were never anywhere forested or even vaguely green - McManus was a car nut and they spent their time on autobahns, in high-rise hotels and car mus-eums, she says. "It was all metal and concrete." On the other hand, one researcher said Lyme disease is so prevalent in Europe "you could catch it sitting in a Munich beer garden".

Good Weekend spoke to several people who have never left Australia but believe they are suffering from Lyme, or a version of it, following bites. A Sydney couple, Jodie and Brett Donnelly (below), believe Brett contracted the disease (and perhaps a parasite infection as well) after coming into daily contact with birds carrying infected ticks and mites at his workplace. Severe rashes and weird skin conditions were followed by extreme fatigue, pain, an atrophying leg, difficulty walking and, recently, cognitive decline and pains in his heart and spine. When Good Weekend met with the couple, it was obvious he was having great difficulty with recall and gathering his thoughts. Jodie says she has suffered a less severe version of many of the symptoms as well.

Brett was given diagnoses that included scabies, eczema, delusional parasitosis (a psychosis) and terminal cancer. The couple had to battle to have him tested for Borrelia. "And even then, it's been a nightmare trying to get the results," Jodie says. Brett has tested positive for Borrelia, but through a lab that lacks the accreditation the government recommends. Another recent preliminary test, at an accredited lab, appeared to return a positive result for two strains, but was not later confirmed. As one expert noted, "Borrelia testing can be hellishly complicated, and a negative test doesn't necessarily mean you haven't got the disease. It just means you can't confirm the diagnosis."

The Donnellys insist they have since heard of dozens of cases of other people with similar symptoms - including fatigue, rashes, shooting head pains, extremely sore soles of the feet - after some sort of contact with birds. Are these people suffering Lyme, or something else again? And why are they meeting with such resistance?

Deadly little bite

It's impossible to tell how many australians are experiencing Lyme-like symptoms. The lab at Sydney's Westmead Hospital conducts about 30 tests a week, and Royal North Shore Hospital about 16 a month, but there's no way of knowing how many people go to doctors with symptoms but are never suspected of having borreliosis. Many people who believe they suffer from Lyme told Good Weekend their doctor never asked if they'd been bitten by a tick or been in Lyme-endemic areas.

Mualla Akinci McManus is convinced that Lyme, or something like it, is what her husband Karl contracted after being bitten by a tick in 2007, while working on the set of Home and Away in bushland in Sydney's Terrey Hills. He didn't remove it until he came home, and used kerosene to do so, which is not recommended (see The Enemy, page 20). A week or so later McManus had flu-like symptoms. In ensuing months, he developed rashes, a stiff neck, sweats, facial discolouration, mood changes and neurological complications. Three years later, the once healthy 44-year-old had a paralysed tongue, paralysed arms, was wheelchair-bound and being fed through a tube in his stomach. Had he received the proper treatment early enough and for long enough, his widow believes, he'd be alive today.

She refuses to accept the specialists' diagnosis of multifocal neuropathy or, possibly, motor neurone disease - "diagnosed after five minutes, with no history-taking, and ignoring so many of his symptoms", she says. (There are no diagnostic tests for these other illnesses, either.) Tests for Borrelia done by government-approved labs here came back negative, while tests the couple had done by labs in Germany and America showed positive, she says. "I know he didn't have motor neurone or multifocal neuropathy because he had three periods of improvement when he was getting the right treatment," she says, referring to his time in a German clinic. "You don't improve when you've got motor neurone. I took him out of hospital because they weren't helping him at all and I managed to get him to put on 15 kilos and build up muscle. That's unheard of with the diseases they said he had."

In the end, it was apparently a respiratory infection that killed him. Akinci McManus was awarded a Supreme Court injunction last year to have her late husband's body tested for Lyme. She won't release the postmortem report done here but says it was "inconclusive". She's awaiting results from labs in the US and Austria on postmortem tissue.

Meanwhile, she has set up the Lyme Disease Association of Australia and the Karl McManus Foundation to raise research funds. She's also planning to take a class action against the NSW Health Department, joined by more than 100 other Australians, she says, who believe they have Lyme and have not been treated for it. However, the action could take years to get going. First, they have to find a bacterium here that could be the culprit.

Akinci McManus is not one to give up. There's only one point in our interview where this tough-talking, recently bereaved woman allows herself to break down. "Karl trusted me and I failed him," she says through tears. "I must not fail him in this ... Nothing in science is black and white, so why can't they just consider it?"

Ticks and disease

Dr bernie hudson, an infectious disease specialist at Royal North Shore Hospital, is one of several doctors who treated Karl McManus. He can't state categorically whether or not McManus had Lyme, however, Hudson does believe there is Lyme, or an indigenous similar illness, in Australia, carried by ticks or perhaps some other blood-sucking insect, although he's not sure how common it is.

Illness following a tick bite is "probably massively under-diagnosed", he suggests. "As to what that illness is, that's more difficult ... For instance, there's a thing called red meat allergy, related to tick bites. People have been known to develop life-threatening allergic reactions to red meat, triggered by tick bite. The tick saliva has got a lot of stuff in it that changes your immune response, because the tick has to be able to stick on you to get a blood meal. It can change what the cells are doing locally and those cells don't stay there - they go to other parts of your body."

Tick-borne bacteria can lie dormant in the body and severe symptoms may not appear for months or even years, by which time people have forgotten about a tick bite, assuming they were aware of it to begin with. Akinci McManus, who is also a pharmacist with an honours degree in immunology, a master's in haematology, a PhD in neuropharmacology, and was a postdoctoral fellow at the Garvan Institute, believes tick-borne bacteria could be involved in many more diseases than we realise, because the symptoms mimic so many other conditions. "Say you're diagnosed with Parkinson's. The doctor will say it's an auto-immune disease. You're not going to think, 'Oh, remember that time I was working in the garden and got bitten by a tick?'"

On the other hand, a tick bite might have nothing to do with such an illness; the causes of many of these diseases, like Parkinson's, multiple sclerosis and motor neurone disease, are still unknown. Her point is, has it been ruled out in diagnosis?

In America and Europe, where Lyme disease is common, the erythema migrans (EM) or bullseye rash, which can be an early symptom of Lyme but shows up in only 60 to 80 per cent of cases, usually sets off alarm bells. Here, it's more likely to be met with well-meaning ignorance. One Sydney woman, who wants to be known only as Kate, told Good Weekend she developed a textbook rash, taking up half her thigh, soon after lunching on Sydney's northern beaches, anecdotally a notorious spot for infected ticks. (Rickettsia, or spotted fever, a less-serious bacterial tick-borne illness, is common in the area, according to Hudson, as well as being found in northern NSW, Tasmania, Queensland and eastern Victoria.)

Kate didn't realise it was a tick that had bitten her. When she showed the rash to her local chemist, the staff had no idea what it was and gave her steroid cream. "It went down, almost overnight, and I forgot about it," Kate says. "That was in February. By July, I had some weird things happening in my head - a kind of 'eeeh, eeeh' noise like my brain was stopping and starting. Every time I got a breeze on my hands it felt so freezing. I started feeling exhausted and confused. I was attending a class and couldn't understand what the teacher was telling me."

Her symptoms grew worse. Her hand wouldn't work properly, she started to drag her left leg. Her skin burned. It wasn't until she heard a radio report about McManus that it occurred to her it might be Lyme. When she Googled it, there was her rash. The first doctor she spoke to told her the idea was "rubbish". "He said Lyme doesn't exist here and that I'd been spending too much time on the internet." She had to beg and plead to be referred to Bernie Hudson. She says he confirmed she had Lyme disease, or a Lyme-like disease, and is now treating her with courses of antibiotics.

Says Kate, "In any country that recognises it, a person presenting with a tick bite and the bullseye rash would have a good chance of early treatment - a few weeks of very cheap antibiotics. Here, a patient has to get really sick, eventually work out themselves what's wrong, rally all their resources at a time when they're largely dysfunctional, and fight for treatment, not just against disinterest but against outright opposition coming from people who should be sympathetic."

Many doctors are reluctant to prescribe anti-biotics for a disease that isn't supposed to be here and that may show up negative in blood tests. But early treatment is key and Hudson, among others, believes it's better not to risk letting the disease get a grip. "Whether you believe it exists here or not, if you give someone 14 days of antibiotics [tetracyclines] the first time they appear with what looks like Lyme disease, you'll probably save them a lot of grief," he says. "I've been saying that for years. I think that's why on the northern beaches, even if the doctors don't agree, they will sometimes relent and give the patient the antibiotics."

Perhaps jolted by the McManus case, and more reports of patients with Lyme-like symptoms, the NSW Health Department is now undertaking an epidemiological study of reported cases. The results will be presented to a panel of experts "to try to figure out what's going on", says Jeremy McAnulty, director of the department's Centre for Health Protection. Does he believe it's here?

"The evidence so far doesn't point to the fact that Lyme disease is in Australia, but I can't say categorically that it's not. If it is here, it's not affecting a lot of people. The people who report symptoms, of course, have something. The challenge is to diagnose accurately what they have."

Sick or crazy?

Lyme disease is rife in america, with a conservative estimate of 16,000 to 20,000 new cases a year, and is also common in Europe, Russia, parts of Asia and, increasingly, the UK - almost every continent, in fact, except Australia, according to health officials here. Some estimates claim it's one of the fastest-growing infectious diseases in the world, although that may be due to more widespread diagnosis.

As a condition, it was known about early in the 20th century but it wasn't named Lyme disease until the 1970s, after a group of US children from the town of Lyme, Connecticut, and neighbouring districts, developed strange arthritic symptoms. They were diagnosed with juvenile rheumatoid arthritis. However, two concerned mothers thought the cluster - eight times the national average rate for the incidence of juvenile arthritis - must be related to environmental factors and, through hard slog, managed to get an official investigation under way. The common factor was that all the children lived and played in wooded areas, where ticks were rife in spring. Many had developed a rash after being bitten. Eventually, the illness was traced to Borrelia bacteria carried by ticks.

Borrelia is a spirochete, a corkscrew-shaped bacterium from the same family as syphilis. It's passed to humans by ticks that have picked it up from infected mammals, commonly deer, rodents or birds. Those who believe it's in Australia have proposed bandicoots, dogs, wallabies and kangaroos as possible carriers.

Like syphilis, Lyme is called "the great imitator" because it mimics many other illnesses and produces a dazzling, painful array of vague but very real symptoms that zoom erratically around the body, coming and going as the immune system wages an internal war on the bacteria. It can lie dormant for years and then appear or reappear. Not everyone bitten by an infected tick will become ill or very ill. It depends on genetic make-up.

Although it's rarely fatal, Lyme can cause changes in the brain, produce mild or severe skin conditions and blight almost every organ in the body, from the brain to the heart. Different species of the bacteria produce different symptoms, some more arthritic, some neurological.

Early symptoms can include flu-like symptoms, joint swelling, headaches, dizziness, fatigue, depression and the distinctive erythema migrans rash, characteristically circular but not always. The rash can appear anywhere from three to 30 days after a bite, but a rash can also just indicate an allergic reaction to a tick bite.

Left untreated, the bacteria can spread through the bloodstream to joints, the heart, the nervous system and other parts of the skin. Depending on the stage, the neurological form can cause facial palsy, meningitis, shooting pains, memory loss and mood swings. Just to complicate matters, people can suffer co-infections from other parasites or bacteria carried by the same tick. This may explain why some people continue to be ill even after receiving treatment to kill off Borrelia.

Because it can look like so many other illnesses, people with Lyme often complain of having been misdiagnosed, sometimes for years, with other conditions. One of the dangers of misdiagnosis, of failing to recognise the problem is bacterial, is that patients may find themselves on drugs like immunosuppressants or steroid treatments like cortisone that can worsen bacterial infections. (Conversely, it's argued that people can be misdiagnosed with Lyme and thus not treated for the illness they actually have.)

Some Lyme advocacy groups estimate there are about 350 other illnesses it can be mistaken for, but the common ones are depression, fibromyalgia, multiple sclerosis, rheumatoid arthritis, scleroderma, motor neurone disease, Parkinson's disease, lupus and chronic fatigue syndrome - as well as flights of fancy and neurosis.

Victorian woman Rosemary Trudeau, who runs the internet site LymeOz, believes she has had Lyme for the past 22 years, 16 of them without knowing what it was. She says she ended up in a wheelchair, barely able to swallow or breathe, weighing 41 kilograms and close to death. She was variously told she had glandular fever, chronic fatigue, MS, depression. At one point she thought it might be lupus. "So I went to the GP and said, 'Can I have a test for that?' I was in my 20s and I couldn't even hold my head up. I had to rest it on his desk. But instead of doing a test for lupus, he thought I was nuts and put me in a psychiatric ward for a week. After a while I said, 'Look, I'm not crazy, I'm just sick', and they agreed and sent me home."

(Trudeau believes she contracted Lyme through an ex-partner, who had developed the EM rash after a visit to Queensland. However, there's debate about whether, like syphilis, it can be transmitted sexually, or via the placenta.)

Even conditions like ADHD and autism have been linked to Borrelia, although that research is hypothetical. Some Lyme sites tell stories of children undergoing sudden personality changes, or experiencing learning difficulties months after, for example, returning from a camping trip.

It's easy to see why a patient would rather think they had a treatable disease like Lyme than, say, an incurable one like motor neurone; everyone wants hope. But it's also possible they actually do have Lyme, or some local version. Could it be that we just haven't pinpointed the right strain of the micro-organism? Could it be that the tests we are using don't suit Australian conditions?

Mixed opinions

In medical and scientific circles it's not uncommon for opinions to differ about diagnoses depending on various research studies. In Australia, a scientific study carried out 17 years ago forms the backbone of our public-health policy on Lyme disease. That study, led by Richard Russell and Stephen Doggett, two entomologists at Westmead Hospital, the hospital now responsible for much of the diagnostic testing for borreliosis, looked at 12,000 ticks at the time and found "no conclusive evidence" Australian ticks carried spirochetes. Interviewed by The Sydney Morning Herald last year, Doggett maintained that position. "There's not one piece of scientific evidence to say Lyme occurs in Australia. There are reputations built on the existence of Lyme disease in Australia. People are embarrassed ... to admit it's not here."

However, several other reputable scientists Good Weekend spoke to had criticisms about some aspects of that mid-1990s paper. For that matter, while its conclusions were firm and the two scientists are experts in their field, the paper itself contained some provisos. Isolating the bacteria is complex and the absence of evidence is not evidence of absence.

Around that same time, a PhD student, Michelle Wills, undertook work with University of Newcastle virologist Professor Richard Barry. They found at very least "presumptive evidence", Barry says, of spirochetes in Australian ticks, as had earlier work in the 1950s. Later, in conjunction with Bernie Hudson, they carried out serological tests on more than 2000 symptomatic patients suspected of Lyme and found what appeared to be some positive results. Lack of funding meant they couldn't try to put those two pieces together: it wasn't enough to find a spirochete or find sick people - they needed to show that a spirochete caused that illness.

Barry says their findings were overshadowed by the Westmead work, which, funded by the National Health and Medical Research Council, "became the orthodoxy". And medical orthodoxy is slow to shift, notes Professor Tim Roberts, a microbiologist at the University of Newcastle who also believes Lyme exists here, persuaded by clinical evidence and the Wills/Barry work. "New discoveries in science take a long, long time to be accepted, particularly in clinical medicine. Look at the history of gastric ulcers. It took 17 years before the Royal Australasian College of GPs actually acknowledged that one should test for [the bacterium] Helicobacter pylori if someone's got an ulcer. Seventeen years!"

Researchers like Barry, Wills and Hudson think it's plausible we have an unknown strain or species of Borrelia here, which may not show up in existing tests, and even Russell and Doggett have acknowledged that possibility, although there's no hard evidence so far and, as their paper pointed out, Australia doesn't have the species of Lyme ticks found in the northern hemisphere.

But given that so many strains of Borrelia have found their way around the world, is it so unlikely it has also found its way here? Migratory birds carrying ticks are an obvious source, says Richard Barry. He points out that a common northern European strain of Borrelia, called garinii, is found in ticks carried by birds like shearwaters. "Where do shearwaters migrate in the world?" he asks rhetorically. "They come down from the northern hemisphere and, occasionally, they do a lot of dying off the east coast of NSW. They're also called muttonbirds.

"They nest in the sandhills and then prepare to fly back. If garinii occurs in the tick that infests these birds, and these birds nest along the NSW coast, and our tick population is located largely in the eastern coastal region, what if these ticks get into, say, bandicoots and set up a new ecological cycle?" When other ticks bite the infected bandicoot, they pick up the bacteria. From there, it can be passed to humans. "That scenario is more than possible. It's highly possible."

Researchers have found at least 18 varieties of Borrelia that can cause Lyme disease, and more may turn up. Different types can cause different symptoms. The US species Borrelia burgdorferi causes mainly arthritic symptoms. Borrelia garinii, one of two major strains in Europe, causes neurological symptoms, from twitching to muscle fatigue, memory loss and panic attacks. Another, afzelii, is thought to cause a severe skin condition called acrodermatitis chronica atrophicans (see Ticked Off, left).

For now, in the absence of further research, the mysteries remain. Is Lyme disease in Australia? And if so, how widespread is it? Bernie Hudson remembers being at a conference some years ago and presenting his findings of 12 or 15 positive results for Borrelia out of 150 skin biopsies he had taken from Lyme suspects. Another researcher at the conference said dismissively, "Well, that's not many." Did that comment worry him?

"It starts like this. First they say, 'No it doesn't occur.' Then they say, 'Oh, you've got some positives. All right, there's a few there.' Then they go, 'Jeez, it's more common than we thought.' And then the last thing is, 'Shit, everyone's got it.'

"No need to panic, however. It's not swine flu. Says Michelle Wills, "You've got to keep it in perspective. You don't want people to be phobic about ticks. It's like mosquitoes: you get bitten but you're not going to end up with Ross River fever unless you're very unlucky, and it's the same with Lyme. Some people are unlucky. It's just a matter of making sure there's appropriate treatment available for the unlucky ones."

The first step, however, is agreeing there's something that needs to be treated.

The enemy

Ticks are most active in spring or summer. They like humidity and can't survive very dry conditions.

Prompt removal is important. Use blunt forceps or fine tweezers, grasping the tick behind its head as close to the skin as possible, without twisting. If head or mouth parts are left, don't try to dig them out; they will drop off later. With infestations of tiny ticks (ticks at larval stage - often called, incorrectly, "grass ticks"), try a 30-minute bath with a cup of bicarbonate of soda added.

Ticked off

Ask Wayne Bowen, a NSW farmer, to describe his symptoms and he sighs. The list includes fatigue, stiffness, muscle twitches, pins and needles, sudden headaches and crushing pain, aching eyeballs, and "feeling like razor blades are slashing my heels". "I sound like a whinger, don't I?" he says.

Like many of the people Good Weekend spoke to, Bowen also suffers "brain fog" and memory loss and is highly sensitive to noise and light. A test through Australian Biologics, a private laboratory, found "something similar to" Borrelia valaisiana (a species of bacteria found in Russia and China) and Bowen believes he is also suffering from acrodermatitis chronica atrophicans (ACA), a painful skin condition associated with European Lyme disease.

Bowen has never been out of Australia, but he has been bitten often by ticks and three times developed the telltale bullseye EM rash.

The diagnosis of ACA, and of Lyme, was made by Laurieton dermatologist Peter Mayne, but Bowen says he has yet to convince his specialists. They've dismissed the positive test as unreliable. Instead, Bowen has been told he has sarcoidosis.

He says, "Sarcoidosis seems to be a last-resort diagnosis when they can't find anything else. But I've also read that it can be Lyme-related. The lady who used to live next door also had it. Sarcoidosis is a one in 20,000 disease in Australia, maybe one in 10,000. What are the odds of the woman next door having it? If you Google 'sarcoidosis and rural areas', you find it's much more prominent there. You have to wonder, well, what's out in the bush?" Ticks, for one thing.

Quoted from website: http://newsstore.theage.com.au/apps/viewDocument.ac?page=1&sy=age&kw=bad+blood&pb=all_ffx&dt=selectRange&dr=day&so=relevance&sf=text&sf=headline&rc=10&rm=200&sp=nrm&clsPage=1docID=SMH1106114F8PB1IADOJ
Image from website: http://mylifeinthelymelight.blogspot.com/2010_11_01_archive.html

Could I have Lyme Disease Doctor?

CLICK HERE FOR ENTERTAINING LYME DISEASE ANIMATION

This hilarious cartoon captures well the response I received from a prominent Infectious Disease specialist referred to in Queensland 18mths ago when I suspected Lyme Disease as the cause of my decade of illness. Fortunately I pursued other avenues to receive the antibiotic treatment that has assisted my recovery to this point, and I have been able to do many things I never thought I would again - thanks to the truly inspiring dedication of my attentive Doctor who cared enough to listen.

Australian doctors “failing in their duty of care” regarding Lyme Disease

COFFS MUM KEEPING UP THE LYME DISEASE FIGHT
Written by Vanessa Almond (5 May 2011, Coffs Coast Independent News)

FOR Coffs coast mum Natalie Young, her ongoing battle with Lyme disease is nothing compared to the battle she has faced trying to get Australian doctors and medical authorities to acknowledge that the illness is even present in this country, let alone that it is affecting many Australians.

The current factsheet on Lyme disease on the NSW Health website – dated July 2010, yet apparently based on research more than a decade old – states that “Ticks with (Lyme disease causing) Borrelia infection live in temperate forested areas of northern Asia, Europe and the United States.

“In the 1990s, 12,000 ticks were collected from different parts of NSW and were tested for Borrelia bacteria. No evidence of Borrelia infection could be found in any of the ticks collected”.

Yet a report published by the Sydney Morning Herald as early as 1995 quoted associate professor of microbiology at Newcastle University, Richard Barry, as saying he had documented 66 cases of Lyme disease.

“That is probably the tip of the iceberg. If we have found 66, there could be 6000,” Professor Barry said at the time, adding that he believed the disease “existed along the entire Australian east coast in an indigenous strain that differed slightly from the overseas version.”

Suffering “hundreds” of tick bites during her active and rewarding career with the National Parks and Wildlife Service, the once outdoorsy and active young mum these days struggles just to get through each day.

Suffering chronic pain and exhaustion along with fever, headaches, damage to her nerves, head, shoulders and throat, Ms Young said she was at one stage near-death from the infection.

Yet despite a 10-year battle with the disease and several positive Lyme disease diagnoses from world-eminent doctors, she is yet to see any acceptance from the Australian medical community, which she said is causing other sufferers of the disease to go undiagnosed and untreated.

After travelling to the United States to consult with specialists in tick-borne diseases in January, Ms Young said that the American doctors accused the Australian medical profession of “having its head in the sand”, finding the treatment she had received “laughable” and saying that Australian doctors were “failing in their duty of care”.

“To meet the American specialists in this field was such a relief. They knew immediately how to treat the infection and also diagnosed a further infection which was complicating the condition,” Ms Young said.

“Because the Australian medical community is in denial about Lyme disease, local doctors do not have access to the best and most up-to-date tests and treatments for this condition.

“For example, I was given steroids early on in my illness, which is apparently almost the worst thing that can be done for a Lyme disease patient. Plus, the only tests for Lyme disease available to Australian doctors are known as the ‘ELISA’ test and serial Western Blot sampling, which are proven to be inconclusive at best.”

According to the International Lyme And Associated Diseases Society (ILADS), the ELISA screening test misses 35 per cent of culture proven Lyme disease, and, of patients with acute culture-proven Lyme disease, 20-30 percent test negative on serial Western Blot sampling as antibodies appear to decline over time.

“Of all dozen or so Australian doctors I consulted, the only one who was able to help me was (Port Macquarie-based) Dr Peter Mayne, who is himself treating many
patients with Lyme disease and fighting the establishment for recognition of the presence of the illness in Australia. Meeting Dr Mayne saved my life,” Ms Young said.

Fellow Australian sufferers also include Ms Young’s own daughter Matilda, four, who has had the disease since birth, which is, said Ms Young, proof that the illness is also transmitted in-utero. It was concern for Matilda’s declining health that finally pushed the exhausted mum to seek medical assistance overseas.

Despite costs of more than $40,000 for the trip to America, Ms Young, who, along with Matilda, was immediately started on new treatments by her US doctors costing around $1200 per month to maintain, said she will not give up.

“I did this for my daughter,” she said. “She should not have to go through this. Nobody should. The saddest part is that Matilda doesn’t really know how I really am. I used to love life and I was extremely active. Surfing was my passion and I dreamt of teaching Matilda to surf and of us going on surfing safaris together. Now I just don’t know what the future holds.

“I just want the Australian medical profession to take notice and to accept that this Lyme disease is real, it’s here and we need to fight it to end needless suffering.”

Quoted with photo from website: http://www.coffscoastindependent.com.au/news/local/news/general/coffs-mum-keeping-up-the-lyme-disease-fight/2154217.aspx?storypage=2

Western Australian seeks overseas medical attention for CFS after multiple euthanasia attempts

CHRONIC FATIGUE VICTIM THEDA MYINT LOCKED UP AT FREMANTLE HOSPITAL AFTER EUTHANASIA ATTEMPT (WA Today News - April 20, 2011 Written By Lucy Rickard)

Theda's partner Blake Graham, mother Carol Adams at her bedside at home in Willetton. Photo: Chalpat Sonti

A Perth woman battling chronic fatigue syndrome was committed to the locked ward of Fremantle Hospital after an attempt to euthanise herself in a desperate bid to address her crippling condition.

Theda Myint, 34, has grappled with myalgic encephalomyelitis (ME) – better known as chronic fatigue syndrome – for 11 years. The condition has left her bedridden with crippling migraines, severe body pain and an extremely low tolerance to light and noise.

She and her mother, Carol Adams, have campaigned to raise awareness of the condition, which they say is commonly misunderstood in the medical world.

This intravenous drip helps Theda Myint battle the migraines which are part of her daily battle as a Chronic Fatigue Syndrome sufferer.

An intravenous drip helps Theda Myint battle the migraines which are part of her daily battle as a Chronic Fatigue Syndrome sufferer. Photo: Chalpat Sonti

The pair have also lobbied the state government to subsidise her medical treatments, which they say must be administered in the home due to the debilitating nature of her condition, but their requests have so far been rebuffed.

Ms Myint was rushed to hospital by ambulance last Wednesday after attempting to end her life for the third time in five weeks.

Her mother Carol Adams said ambulance, emergency and intensive care staff were "fantastic" in treating her debilitating ME pain, and it wasn't until she was transferred to one of the hospital's medical wards that things took a turn for the worst.

Ward staff informed Ms Adams that they would not be able to provide food for her daughter due to her intolerances to potatoes, gluten, eggs, lactose and legumes brought on by her condition. In desperation, the family was forced to turn to highly processed food from a vending machine after Ms Myint went without food for two days.

While on the medical ward, a psychiatrist reviewed her case in light of her suicide attempt and made the decision to move her onto a locked ward, rescinding her rights and placing doctors in full control of her wellbeing.

"She was in so much pain. As soon as she was put in the locked ward, her ME needs were not being met," Ms Adams said. "She was in a nine out of 10 for pain, and she was being refused treatment for that.

"She asked to have a hot bath or shower to ease her pain, and she was told she couldn't because it would disturb the other patients.

"She asked to see another doctor, and she was refused. She then asked to be taken back to emergency, and that was also refused because she was in the psychiatric ward."

It was then that Ms Adams appealed to WAtoday.com.au for help. After a call was placed by this website to the hospital on Saturday morning, Ms Myint began getting the treatment she required and that afternoon she was released from hospital.

"It was only in desperation that we contacted the media, as our requests to the hospital had been refused," Ms Adams said.

A Fremantle Hospital spokeswoman refused to directly address Ms Adams' accusations about her daughter's treatment.

"We have every confidence in the care provided to Theda during her recent admission to Fremantle Hospital," she said. "We are unable to comment any further due to patient confidentiality."

Health Minster Kim Hames also declined to comment on Ms Myint's treatment at Fremantle Hospital last week, citing issues of patient confidentiality.

Now back home, Ms Myint is under 24-hour watch by her mother, who said she was deeply concerned that she may try to harm herself again.

"She is extremely distressed and she just wants to die," she said.

"She has just lost all hope. She doesn't believe anyone can help her anymore. She's had so many knockbacks and has been let down so many times, she's just frightened to have hope."

Ms Adams' previous appeals to the state government to subsidise in-home treatments have been ignored, with Dr Hames previously telling the family that he was "unable to direct any doctor to provide care outside what they consider to be standard medical practice".

Each in-home treatment administered by the family's GP costs about $350, and Ms Adams said her daughter would need the treatments on a weekly basis to see any improvement to her condition.

Ms Myint is now placing her hopes on an Indian traditional medical treatment known as "ayurveda", which Ms Adams said was "a desperate measure, but we cannot get the help we need in Australia".

Ms Adams said she was using the last of her superannuation funds to fly her and her daughter to India, where she hoped the alternative treatment would relieve Ms Myint's pain. But Ms Myint's confidence that she could recover was at an all-time low.

"She said to me, 'It would be good if it helps, wouldn't it mum. But I know that it won't'," Ms Adams said.

She said she was planning on lodging a formal complaint to the Health Department over her daughter's recent treatment at Fremantle Hospital, but said her lack of funds meant any legal battles could not be fought through the courts.

Anyone wanting help or counselling for mental health issues 24 hours a day should contact Lifeline 131 114, Mensline 1300 789 978, or Kids Helpline 1800 551 800.

Read more: http://www.watoday.com.au/wa-news/chronic-fatigue-victim-theda-myint-locked-up-at-fremantle-hospital-after-euthanasia-attempt-20110419-1dmuu.html#ixzz1KYOPOu00

Quoted from website: www.watoday.com.au/wa-news/chronic-fatigue-victim-theda-myint-locked-up-at-fremantle-hospital-after-euthanasia-attempt-20110419-1dmuu.html?from=watoday_sb

Raising awareness of Lyme Disease - Australian Girl Guide

Imagine becoming paralysed from just one small tick. Some ticks carry Lyme Disease, which can lead to paralysis and many other health complications.

Cessnock Girl Guide Lauren Gray is raising awareness of the disease for the main focus and service element of her Queens Guide.

Lauren realised the impact Lyme Disease can have when she met Hannah Coleman at the Guides’ “Be The Change” conference in Sydney in September.

Hannah was wheelchair-bound after being bitten by a tick at a Guide campsite months before. She also suffered chronic fatigue, breathing difficulties and was put on IV treatment.

She has since undergone aggressive treatment with an American doctor and is once again walking, talking and eating.

“The weekend that we first met I got bitten by four ticks which freaked me out to the max,” Lauren said.

“My goal is to raise awareness and ‘slime Lyme disease’. Myself and friends of mine will be taking turns at spending time in a wheelchair for a week. I am hoping that this will raise awareness of the disease and that anyone can be affected by one simple tick.”

Lauren and a few of her friends at Kurri High School will spend time in a wheelchair at school from February 23 to March 3, and on the last day will hold an out-of-uniform day where everyone will dress in green for the cause.

The Cessnock District Girl Guides will hold a fun day at Kurri Aquatic Centre on Saturday, February 26.

“Lyme disease is a serious matter and affects hundreds of Australians. The more people who know and become aware of the disease, affects and cause the quicker they can get diagnosed and treated the better," Lauren said.

Lyme disease is caused by certain ticks carrying bacteria and if left untreated can have serious affects.

Early symptoms include unexplained fatigue and flu-like symptoms. Chronic symptoms include effects to the head neck, face, eyes and vision, ears and hearing, digestion and excretory system, respiratory and circulatory system and neurological system, physical wellbeing, mental capability, reproduction and general wellbeing.

“All of these affects from one tick gives a new meaning to being ticked off!” Lauren said.

All money raised at this fun day will go towards helping the Lyme Disease Association of Australia bring doctors over to Australia to provide education on treating Lyme disease patients.

Kurri Aquatic Centre’s inflatable island will be set up and the Guides will hold a barbecue and raffle. Normal pool entry fees will apply.

Lauren is seeking donations, raffle prizes and sponsorship for her project. For more information on Lauren’s project or to make a donation, phone (02) 49361627 or email country_gal.95@hotmail.com

Quoted from newspaper article in THE ADVERTISER, February 23, 2011.
(www.cessnock.yourguide.com.au)

PHARMACISTS IN THE FRONTLINE - Pharmacy Daily

LYME DISEASE PRESS RELEASE PUBLISHED 16 MARCH 2011 - PHARMACY DAILY

PHARMACISTS can play an important part in preventing the spread of Lyme disease in Australia, according to Dr Mualla Akinci McManus, owner of the Gold Cross
Pharmacy in Redfern.

Lyme disease is caused by three strains of the Borrelia bacteria, and
is transmitted by tick bites.

Known as the great imitator, the disease shares common symptoms with many chronic diseases (MS, Parkinson’s, chronic fatigue syndrome etc), which can start within a week of being bitten (and sometimes much later).

Symptoms can include sinusitis, stiff neck, sweat attacks, muscle
twitches, muscle weakness, involuntary jerking of limbs,
arthritis, Bell’s palsy, cramps, paralysis, depression, brain fog,
insomnia, balance problems, light sensitivity, noise sensitivity, optic
neuritis, nerve conduction defects, numbness, cardiac conduction
abnormalities, swallowing difficulties and tinnitus.

Whilst Lyme disease exists in America and Europe, it is not
recognised by government authorities as being present in
Australia.

“Because our government is in denial about the existence of Lyme
disease in Australia, the vast majority of people don’t realise it is
here and that they should take special precautions when visiting
tick-prone areas,” said McManus, whose husband passed away from
the disease last year.

“Any pharmacist working in a tick area should get clued up about the
disease and how to prevent it.

“Wearing appropriate clothing and using an insect repellent
containing DEET (not for children) to prevent tick bites is the first line
of defence.

“And if a customer is bitten by a tick, it’s vital that the person knows
how to remove the tick correctly or they risk the tick injecting more of
the Borrelia (Lyme-disease bacteria) into them,” she added.

Stocking tick removers in pharmacies is also an important
step, said McManus, who added that if a customer comes in with flulike
symptoms or a bulls-eye rash following a tick bite, then
pharmacists should advise them to head straight to a doctor for a
course of antibiotics to prevent the development of the disease.

For more information visit -
www.karlmcmanusfoundation.org.au."

Article quoted from website: http://archive.traveldaily.com.au/PD/2011/Mar11/pd160311.pdf

Lyme rash diagram from website: http://ehealthmd.com/library/lymedisease/lym_symptoms.html\

Investigation in Lyme Borreliosis and other Vector-Borne Diseases in People and Dogs in Australia - Murdoch Uni

Hello

You have been sent this letter and its enclosures by Dr Peter Mayne of the Laurieton Medical Centre.

I would like to invite you, through Dr Mayne, to join a study I am conducting into several vector-borne diseases – Lyme Borreliosis, Bartonellosis and Rickettsiosis.

It is my understanding that you have been diagnosed with Lyme disease by Dr Mayne, and either have a pet dog yourself or have a close association with a dog or dogs (maybe you walk with a friend who has dogs). By way of background to this study, I am a veterinarian who studies vector-borne diseases of dogs, and I also teach clinical medicine to veterinary students at the Murdoch University Veterinary School. As I expect you know, Lyme disease is caused by Borrelia bacteria that are usually transmitted to humans via the bite of an infected tick. In regions of the world where Lyme disease is endemic and well recognised, such as in north-eastern USA, people’s dogs are also often infected by the same organism. This is because dogs, being ‘closer to the ground’ and having ready access to the undergrowth, are even more likely than their owners to be exposed to the vector ticks. Dogs are often regarded in these regions as “sentinels” of infection; in other words the dogs can act as an early warning of potential infection in humans in the area.

I am interested to know whether the dogs in your life have been exposed to Borrelia and/or other pathogens that can also cause illness in people, such as Bartonella bacteria or Rickettsia (another bacterium-like micro-organism).

In order for this research project to be fully informative I need your consent to obtain information about yourself and about your dog(s) and I also seek your permission to examine and take a blood sample from your dog(s). Both aspects of this study have been approved by the Research Ethics Committees (Human and Animal) at Murdoch University. It is entirely up to you as to how much information you permit me access to, and whether you allow me to take a blood sample from your dog(s). If you do not wish to participate, you need not do anything further.

If you wish to participate in the study I suggest that we proceed as follows:

1. You read all the information provided with this letter, sign the consent forms (one each for the Human Ethics and Animal Ethics Committees), and return them to me by mail (self-addressed envelope enclosed) together with the questionnaire, completed to the best of your ability.

2. After receipt of the signed consent form, I will contact you by telephone to arrange a time and location for us to meet and for me to examine your dog(s) and collect a blood sample from them. As you will see from this letter, I am based in Western Australia, so I will be arranging a week-long visit to NSW in March or April.

3. I am also seeking your consent to test samples from you, such as blood or tissues. In many cases these will have been taken previously by Dr Mayne or other doctors and are stored in a laboratory, so I just need your permission to access them. If no such samples are stored, I might need to ask if we can collect another blood sample from you. I should point out that this would be done by your health professionals, and not by me!

The initial results of the blood test on your dog(s) will be available immediately. I will be using a test kit known as the Idexx Snap 4Dx. This provides information on whether your dog has been exposed to three bacterial organisms (Borrelia, Ehrlichia and Anaplasma) and whether he/she has heartworm. So this is a free heartworm test as well!

I will be happy to discuss the significance of the test results with you of course, especially if any is positive, but I would also like to send a report to your own veterinarian as a matter of courtesy.

If you have a close interaction with certain dogs by association, such as those owned by family or friends, but do not actually own a dog, I would also like to examine those dogs and sample them if possible. This will require their owners to agree to me testing the dogs and they should therefore complete one of the enclosed Animal Ethics consent forms. You should still complete the questionnaire and return it to me together with the consent forms (one signed by you and one (for each dog) signed by the owner).

You can decide at any time to withdraw your consent to participate in this research. If you decide to withdraw, any material you have given us will be destroyed. Withdrawing from the research will have no consequences for your ongoing interaction with Dr Mayne.

I am happy to discuss with you any concerns you may have about this study. All my contact details are provided below.

In addition to the blood test results that I will be able to tell you immediately, you can expect to receive feedback from the overall study within a few months of our meeting.

Sincerely
Peter Irwin, BVetMed, PhD, FACVSc (Canine Medicine), MRCVS
Associate Professor in Small Animal Medicine
Registered Specialist (WA) in Canine Medicine
Direct office line: 08 9360 2590
Mobile: 0428 364868
Email: P.Irwin@murdoch.edu.au

This study has been approved by the Murdoch University Human Research Ethics Committee (Approval 2011/05) AND the Murdoch University Animal Ethics Committee (Approval R2385/10). If you have any reservation or complaint about the ethical conduct of this research, and wish to talk with an independent person, you may contact Murdoch University’s Research Ethics Office (Tel. 08 9360 6677 or e-mail ethics@murdoch.edu.au). Any issues you raise will be treated in confidence and investigated fully, and you will be informed of the outcome."

Quoted from an information letter PDF distributed by Peter Irwin to Lyme patients.
Image from website: http://www.lymeinfo.com/diagnosisandtreatment-riskfactors.aspx

DEADLY CAT-FLEA DISEASE HITS AUSTRALIA

SYDNEY MORNING HERALD - 6 JAN 2011
Julia Medew January 06, 2011

DOCTORS are urging people to keep their pets clean after discovering Australia's first case of a potentially fatal disease transmitted by cat fleas to humans.
A team of doctors reported the discovery of cat-flea typhus in the Medical Journal of Australia this week after they carried out a lengthy investigation similar to those featured in the hit television series House.

Dr Julian Kelly, a paediatrician at the Royal Children's Hospital in Melbourne, said the journey began when a nine-year-old girl was admitted to the hospital in April 2009 with a fever and rash that could not be easily diagnosed.
She was admitted to the intensive care unit three days later when the infection caused her lungs to fill with fluid.

During her stay, three other members of her family fell sick with the mysterious illness, which was later diagnosed as cat-flea typhus, also known as Rickettsia felis.

While blood tests pointed to the uncommon disease group for the patients while they were in hospital, it took about four months for researchers from a specialist laboratory to track down where the disease came from.

''The family had about 10 different types of animals at their home, they had pigs, rats, mice, cats, ducks, and they lived next door to a swamp, so it was very difficult to work out where it would be,'' Dr Kelly said.

However, when doctors realised all of the patients had been in contact with flea-infested kittens, they followed the lead and discovered the kittens' family, which was living on another property, carried fleas with the disease.

''It was quite an entertaining case … It's taken about 18 months to get to the point of publishing it in the medical journal,'' Dr Kelly said.

He said all of the patients recovered from the illness, which kills about 2 per cent of those infected. Although the bug was rare, its presence in Australia should encourage people to keep their animals clean, he said.

''Make sure you de-flea your cat when you get one. I think that's the take-home message.''

Australian Rickettsial Reference Laboratory director Dr Stephen Graves said that although the disease had been found in cat and dog fleas in Western Australia, it had never been found in humans in Australia. He said people could get the disease if an infected flea bit them, because when fleas bite they defecate the disease from their intestines.

''If the person scratches after being bitten, the flea's faeces get inoculated into the bite site,'' he said. Dr Graves said the disease could cause people to experience symptoms including a fever and rash and could be treated with antibiotics.

Quoted from website: http://m.smh.com.au/national/deadly-catflea-disease-hits-australia-20110105-19g8p.html

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/