Lyme Green Australia

September 2011:: National Lyme Disease Appeal innaguration in Australia

2011-09-09T18:01:00.000-07:00

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

____________________________________________________________

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

2011-09-08T17:04:00.000-07:00

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)

2011-09-07T17:10:00.000-07:00

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

2011-07-21T00:12:00.000-07:00

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

2011-07-03T14:12:00.000-07:00

"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'

2011-06-13T02:41:00.000-07:00

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?

2011-06-07T01:03:00.000-07:00

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

2011-05-16T15:43:00.000-07:00

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

2011-04-25T09:54:00.000-07:00

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

2011-03-31T19:37:00.000-07:00

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

2011-03-18T15:09:00.000-07:00

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

2011-03-16T16:55:00.001-07:00

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

2011-01-05T21:50:00.000-08:00

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

2010-12-23T19:19:00.000-08:00

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

2010-11-12T17:51:00.000-08:00

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

2010-11-12T17:46:00.000-08:00

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

2010-10-03T00:11:00.000-07:00

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)

2010-09-02T21:20:00.000-07:00

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

LYME DISEASE THE NUTS & BOLTS - BURRASCANO 2010

2010-09-02T21:02:00.000-07:00

LYME DISEASE THE NUTS & BOLTS
BY JOSEPH T. BURRASCANO, JR, MD
presented July 2010 in DePere, WISCONSIN

WHAT IS LYME DISEASE?
Lyme disease is the illness that results from the bite of an infected deer tick

STATISTICS
• Fastest growing vector-borne infectious disease in the USA
• CDC estimates are over 200,000 new cases per year!
• In the USA, rate of new cases exceeds that of HIV/AIDS
• Anyone can get it- affects all ages, both genders, and even our pets

LYME IS NEARLY EVERYWHERE!
• Lyme has been reported in all 50 states
• Present worldwide- every continent except Antarctica
• In many areas, lawns have higher tick concentrations than the surrounding woods
• Ticks can survive down to 17 degrees below zero! (may still get tick bites in wintertime)
• Most people are bitten during usual daily activities
• Tick bite is painless
• Tick is so tiny, it can be missed

BASIC FACTS
• Only 16% recall a tick bite
• “Classic” rash (Erythema Migrans) occurs in only 1/3 to ½ of cases
• Subtle onset of nonspecific “viral-like” symptoms often obscure the diagnosis
• Blood test may miss up to ½ of cases!!!
• Spinal fluid serology positive in only 9%!!! (91% false negative rate!!!!)

MORE NEW STRAINS OF BORRELIA IDENTIFIED
• A new strain of Lyme Borrelia called SCW-30h has been found in the USA, in all areas.
• Another new one, B. americana has been found in the South from Texas to the Atlantic
• These are being investigated to find out if they can make you ill, and if so, how best to treat it.
• ?atypical Lyme; seronegative Lyme

INCREDIBLY COMPLEX!
• Ticks may carry DOZENS of potential pathogens- NATURE’S DIRTY NEEDLE!
• One tick bite can result in simultaneous co-infections by different germs
– Spirochetes (Lyme)
– Parasites (Babesia)
– Bacteria (Ehrlichia, Anaplasma)
– Mycoplasmas (Gulf-War and Chronic Fatigue germs)
– Viruses (T.B.E., West Nile Virus)
– Worms (nematodes)?

XMRV- A New Retrovirus- Is This Another Co-Infection?
• Xenotropic murine leukemia virus-related virus (XMRV) was first isolated from prostate cancer patients
• Dr. Judy Mikovits looked for XMRV in CFIDS patients. She found it in only 3.7% of healthy controls but 95% of CFIDS cases were antibody positive and 68% were PCR-positive. Overall, 98% tested positive!
• Recently, the FDA has independently confirmed this study
• She and collaborating clinicians also found XMRV in Lyme, fibromyalgia, atypical MS and autism
• This is a retrovirus (as is HIV) and theoretically can cause or add to many symptoms and immune defects as seen in these illnesses, as well as in Lyme
• Three avenues of treatment are being studied:
– Anti-retroviral agents, as used in HIV
– Artesunate
– Antiviral herbs

LYME- WHY THE CONCERN?
ILLNESS CAN VARY FROM MILD TO VERY SEVERE
– Early Lyme, if promptly recognized and appropriately treated, can be cured
– Untreated Lyme may progress, causing a very severe illness and disability
– Can be latent for months to years, and later result in catastrophic, permanent damage
– Deaths have been reported
• Most symptoms are non-specific
• Mild symptoms often are dismissed
• Many medical errors due to lack of diagnosis
• More medical errors from incorrect diagnoses and unnecessary or dangerous treatments
– Fibromyalgia, ME/CFS, depression, multiple sclerosis, ALS (Lou Gherig’s Disease), malingering, Munchausen
• Often, patients see literally dozens of doctors and undergo an encyclopedia of tests, Lyme is missed, and they still have no diagnosis
• When medical doctors cannot find a cause for the complaints, they refer patients to a psychiatrist (blame the patient for his/her illness!)
• Can be transmitted from mother to child

TYPES OF LYME DISEASE
• “Classic” Lyme (my definition) includes:
– Early localized
– Early disseminated
– Late disseminated
• Chronic Lyme Disease
– Illness present for one year or longer
– Is a totally different disease!
– May not be curable!

DIAGNOSING LYME A difficult task!
SYMPTOMS
• Headaches, photophobia, stiff neck
• Fatigue, intolerance of exercise
• Aches in and around joints
• Numbness, tingles, sense of vibration
• Poor coordination, imbalance, light-headed, need to sit or lie down, especially in afternoon
• Forgetful, confused, speech errors, ADD-like
• Sleep disturbance
• Neuropsychiatric- anxiety, panic attacks, depression, rage attacks, antisocial behavior
• Intolerance of stress, alcohol, sleep deprivation (any of these will make all symptoms worse)

BLOOD TESTING
• LYME (Borrelia burgdorferi)
– Serologic tests (ELISA, Western Blot)
– Sensitivity is poor: Commercial labs: 50% Private reference labs (Igenex): 70%
– PCR- also poorly sensitive- <30% • Even a spinal tap serology will miss over 90% of cases! • CO-INFECTIONS – Situation is worse- pick up 30% at best!!!! • Conclusion: LYME IS A CLINICAL DIAGNOSIS ERYTHEMA MIGRANS- TYPICAL “BULLSEYE” RASH • Expands over time, Painless, Raised, May be warm RINGWORM – Scaly center – Not raised or warm SPIDER BITE – Painful! – Necrotic center MAKING A CLINICAL DIAGNOSIS: THE POINT SYSTEM • Tick exposure in an endemic region 1 • History consistent with Lyme 2 • Systemic signs & symptoms consistent with Bb infection (other potential diagnoses excluded): • Single system, e.g., monoarthritis 1 • Two or more systems 2 • Erythema migrans, physician confirmed 7 • ACA, biopsy confirmed 7 • Seropositivity 3 • Seroconversion on paired sera 4 • Tissue microscopy, silver stain 3 • Tissue microscopy, monoclonal IFA 4 • Culture positivity 4 • B. burgdorferi antigen recovery 4 • B. burgdorferi DNA/RNA recovery 4 INTERPRETATION DIAGNOSIS • Lyme Borreliosis Highly Likely: 7 or above • Lyme Borreliosis Possible: 5-6 • Lyme Borreliosis Unlikely: 4 or below CD-57 COUNT (Natural Killer Cells) • Low counts seen in Chronic Lyme when the infection has been active > 1 year
• Reflects degree of infection
• CAN BE A SCREENING TEST!
• Predicts a relapse if low when antibiotics end
• Must use method of LabCorp (normal is >180)
– <20- severe illness – 20-60- most common result in chronic patients – >60- Lyme activity minimal
– >120- Relapse NOT likely after treatment ends

EARLY LYME
• Rapid diagnosis is critical- fully curable at this stage if treated properly
– Start treatment as soon as possible
– If a rash is present, start treatment immediately!
• Do not wait for blood tests- Tests may take weeks to become positive or may NEVER get a positive test!
– If no rash, but high suspicion, treat, observe clinically, and retest serially

TREATMENT OF EARLY LYME
Oral antibiotic for 4 to 6 weeks
• Shorter courses associated with a linear rate of treatment failures
• Be sure to use full doses!
– Lyme has already spread to other areas
– Already in the central nervous system
– Inadequate treatment may worsen later illness (“survival of the fittest”)
• APPROPRIATE TREATMENT OF EARLY LYME MAY PREVENT CHRONIC LYME
DISSEMINATED LYME
• By definition, present for more than six weeks, but less than one year
• Initial non-specific symptoms gradually change to involve multiple discrete organ systems:
– Joints (pain, stiffness, subtle swelling)
– Peripheral nerves (numbness, tingles, weakness, vibration)
– Central nervous system (“brain fog”, impaired short-term memory, confusion, mood disorders)
– Original, general symptoms may persist (headache, fatigue, sweats, etc.)
• Specific patterns develop:
– Monthly cycle of waxing and waning illness
– Symptoms affecting major organ systems “migrate”- move around

TREATMENT OF DISSEMINATED LYME
• Start with orals if possible
• If very ill, pregnant, or cannot tolerate oral antibiotics, then may need IV therapy for 6 to 12 weeks, followed by oral therapy if the infection is still active
• May need combination therapy (co-administration of two or more dissimilar antibiotics)
• Duration of treatment often mirrors duration of illness- treat for 6 weeks to 6+ months
• Must be free of signs of active infection before treatment ends

CHRONIC LYME DISEASE
DEFINITION- ILL WITH LYME FOR ONE OR MORE YEARS

• Is the start of clinically significant immune breakdown
– Decreased function and numbers of all three arms of immunity: B, T and NK cells
– Elevated cytokine levels cause many of the symptoms, and further impair the immune response
– Because most Lyme tests are serologies, which measure immune response to B.burgdorferi, a weakened immune system may result in more false negative tests
• PARADOX: The sicker patient is more likely to have a negative (non-reactive) Lyme serology!

CLINICAL FEATURES Very complex disease:
• Difficult to diagnose
• Broad spectrum of illness, from subclinical to severely debilitating, and rarely, can be fatal
• Extremely difficult to treat the infections
• Extremely difficult to manage totality of complaints
• May not be curable in some- why is a chronic illness

CHRONIC LYME
• Primary symptoms of Chronic Lyme are NEUROLOGICAL (nearly every patient)
– Encephalopathy and encephalitis, Peripheral and autonomic neuropathy, Demyelination- central and peripheral
• Inflammatory arthritis in only 5%
• Myositis (muscle inflammation) rare, and Carditis (heart inflammation) also rare
• Immune suppression allows co-infections to flourish, and opportunistic infections (yeast, etc) become more of a problem

CHRONIC LYME IS MORE THAN AN INFECTION
• Immune “Dysregulation”: Immune activation & Immune suppression
• Neurotoxins, Hormonal disturbances, Damage to organs, tissues, cells and DNA
• Nutritional disturbances, Metabolic effects

TREATMENT OF CHRONIC LYME
• Antibiotics, usually in combinations
– Antibiotic synergism, cover all infected tissues, cover alternate forms of Bb, and co-infections
• Nearly every chronic Lyme patient is a candidate for IV antibiotics
• Supportive treatments
– Vitamins, probiotics, exercise, low carb diet, no alcohol, enforced rest
• If neurologic symptoms do not clear, there is the option to treat with IVIG

INDICATIONS FOR INTRAVENOUS THERAPY
• Abnormal spinal fluid (↑WBC, ↑Protein)
• Synovitis with high ESR
• Illness for more than one year
• Age over 60
• Acute disseminated illness in first trimester
• Acute carditis
• Documented immune deficiency
• Prior use of steroids or other immunosuppressants
• Failure or intolerance of oral therapy

DURATION OF ANTIBIOTIC THERAPY- CONTROVERSIAL!
• Restrictive guidelines by Infectious Disease Society of America (IDSA)
– Maximum is one month; rarely will repeat
– No allowance for physician’s clinical judgment or degree of illness of the patient
– No consideration of co-infections
– Under investigation by the Connecticut Attorney General!
• More realistic guidelines by International Lyme and Associated Diseases Society (ILADS)
– Treatment is individualized, based on patient need and response, and may have to be given for months to years

CHRONIC LYME- Treatment Issues
• In chronic Lyme Disease, active infection may persist despite prior antibiotic therapy
• Relapses do occur and retreatment is often needed
• Repeated or prolonged antibiotic therapy usually is necessary
• High doses of antibiotics are needed, and blood levels should be confirmed wherever possible
• Antibiotic combinations usually are necessary
• Check for co-infections and immune status, and treat appropriately
• May need to rotate through different regimens based on response
• If the CD-57 count is not normal at the end of treatment, then continued illness or a relapse is likely
• May not cure the infection, and may need repeated or open-ended maintenance therapy
• Signs of persistence of infection:
– continued fevers, synovitis
– four week cycles, migrating symptoms
– PCR positivity and low CD-57 counts
• As symptoms wind down, I DO NOT cut the dose, for resistance may develop
• Aggressive supportive therapy is required- and search for any other possible cause of a weakened host:
– Toxin exposure, heavy metal poisoning, malnutrition, endocrine dysfunction, other illnesses, severe or ongoing stress
• Progressively increase exercise program as the symptoms of Lyme decrease
– Exercise is vital and required, or a full recovery will not occur
– Not exercising will increase risk of a relapse

CO-INFECTIONS IN LYME
Nearly universal in chronic Lyme
• Symptoms more vague, and overlap
• Diagnostic tests LESS reliable
• Co-infected patients are more ill and more difficult to treat
• Lyme treatments do not treat Babesia, Bartonella or viruses
• One reason for “treatment-resistant” Lyme
• Bartonella, Babesia, Anaplasma, Ehrlichia, Mycoplasma, Viruses, Nematodes?
• ?Others

BARTONELLA-LIKE ORGANISMS (“BLO”)

• More prevalent in NJ ticks than even Borrelia!
• Clinically, seems to be a different species than “cat scratch disease” (?Tularemia)
• Persistent CNS symptoms despite Lyme Rx
• CNS symptoms out of proportion to physical
– Irritability, anxiety, insomnia, seizures, rage attacks, encephalopathy-encephalitis, psychiatric syndromes,
– Also gastritis, rashes, tender skin nodules, sore soles, AM fevers, light night sweats
• CSD serologies and PCR tests are insensitive!
– Miss up to 80% of clinically defined cases
• Bartonella FISH soon to be available

BARTONELLA-LIKE ORGANISMS- TREATMENT-
• Levofloxacin (Levaquin) is drug of choice- 500 mg daily, and consider adding a proton pump inhibitor
• Cell wall drugs suppress but do not kill BLO, but may synergize with fluoroquinolone
• Rifampin and metronidazole may be alternatives
• Erythromycins alone totally ineffective, and may inhibit concurrent fluoroquinolone. However, may work if given with rifampin
• Response to doxycycline alone variable but usually poor- may be combined with rifampin
• Combination of rifampin + Bactrim has had some success
• Treat for 1 to 3+ months if tolerated

PIROPLASMS (Babesia species)
• Many different species found in ticks (13+). Can test for only B.microti and B.duncani
• B. duncani more difficult to treat than B. microti
• Diagnostic tests insensitive
• Chronic persistent infection documented
• Infection is immunosuppressive
• Renders Lyme more severe and more difficult to treat, with worse symptoms and more organ damage

BABESIOSIS- ACUTE AND CHRONIC INFECTIONS
• Acute-
– Abrupt onset of symptoms; no rash
– Spectrum of mild to severe presentations
– Can be fatal!
• Chronic-
– Symptoms blend with those of Lyme and diagnosis often missed

BABESIA TESTING
• Standard smears useful only for acute infections !
– Smears universally negative after two weeks
• Enhanced smears-
– Buffy coat
– Prolonged scanning, with digital photography
• Fluorescent in-situ hybridization assay
– Fluorescent-linked RNA probe
– Increases sensitivity 100-fold over conventional Giemsa-stained smears
• PCR and serology
• All methods are of low yield, but may not overlap! Therefore, recommend use all available tests

DIAGNOSING ACUTE BABESIOSIS
• Acute onset of symptoms
– Sweats, high fever, chills, headache, dark urine, acute hemolytic anemia, severe illness
• Blood smear usually reliable
• Serologic tests may convert within one week, but not always reliable
• Rule out other acute infections

DIAGNOSING CHRONIC BABESIOSIS
• Acute onset of initial illness
• Incomplete response to Lyme treatments
• **Symptoms more severe than expected with Lyme alone**
• Also:
– Marked night sweats which may cycle every several days
– Air hunger, cough
– Severe persistent headaches
– Unrelenting fatigue
– Off balance- “tippy”, not vertigo
• ANY positive test in proper clinical setting

TREATING BABESIOSIS
• Is a parasite, so is treated differently than Lyme, but can be treated concurrently while on Lyme medications
• Mepron (atovaquone) 5+ cc bid, plus azithromycin 600 mg daily for 4 to 6 months minimum, but higher doses may be needed, especially with B. duncani
• Oral clindamycin + quinine rarely used as first line
• Malarone (atovaquone + proguanil), 6+ tabs daily
• Added sulfur (Bactrim DS), 2 to 4 daily
• Added metronidazole (Flagyl), 750 to 1500 mg/d
• Always add artemesia or artemesenin but must be given in cycles- 2-3 weeks on, and 1-2 weeks off
• No Co-Q 10
• In extremely difficult cases, IV clindamycin may be helpful

EHRLICHIOSIS AND ANAPLASMOSIS
• Less common than the other tick-borne infections
• Acute and chronic forms
• Acute- rarely, causes a spotted rash
– Abrupt onset, high fever, muscle pain, headache, low WBC count, elevated liver enzymes
• Chronic-
– Headaches and muscle soreness
– Persistent leucopenia
– Test with serology, PCR or smear
• Treat with doxycycline for 2 to 4 weeks
• Fluoroquinolones and rifampin MAY be (poor) alternatives

MYCOPLASMA
• “Chronic fatigue” germ
• Not clear its origin or source
• More often seen in the immunosuppressed
• Test with serial PCRs (still insensitive)
• Treat with doxycycline and/or a fluoroquinolone, and add hydroxychloroquine (Plaquenil)
• Erythromycins & rifampin, with added hydroxychloroquine OK but less effective
• Treat for three years?
• Restoring better immune function is probably the best approach

OTHER CO-INFECTIONS
Especially in the chronic Lyme and immunosuppressed patients
• Viruses: TBE, West Nile, HHV-6, CMV, other herpes, bornavirus
• Chlamydia, Yeasts, Q-fever?, XMRV?, Others?

SORTING IT ALL OUT !
• LYME-
– Multisystem, 4-week cycles, afternoon fevers, no sweats, gradual onset of illness

• BARTONELLA-
– CNS out of proportion to skeletal
– CNS irritability, GI, Sore soles, sub Q nodules, AM fevers, light sweats, gradual onset of illness

• BABESIA-
– Sweats, fatigue, global headaches, air hunger, cough, hypercoaguable, cycles every few days, rapid onset, very severe Lyme symptoms

• EHRLICHIA-
– Headaches (knife-like), muscles, low WBC, elevated liver function tests, rapid onset

• MYCOPLASMA-
– Fatigue, poor exercise tolerance, slow or minimal response to antibiotics, lots of neuropathy

TREATMENT
More Than Antibiotics!
• Enforced rest, No caffeine, No alcohol, No smoking at all, Low carb, high quality protein diet
• Daily vitamins and other nutritional support, Maintain hydration, Exercise program, Never any steroids!

CLINICAL MEDICINE IN THE 21ST CENTURY: LYME DENIALISM
• If the test does not show it, it does not exist
• If organized medicine did not discover it, it does not exist
• New illnesses become real only after years or decades of clinical trials
• But– will not perform clinical trials on something that does not exist!

WHAT MUST BE DONE
• EDUCATION: Become your own advocate
• AWARENESS: Keep up with not only the latest medical news, but also the political developments
• ADVOCACY: “We will not go away”; Support those who support you
• NEVER GIVE UP

RESOURCES
www.ILADS.org
www.lymediseaseassociation.org
www.mentalhealthandillness.com

Australian Feral Deer Spread Ticks and Lyme Disease

2010-09-02T20:52:00.000-07:00

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

2010-08-27T22:29:00.000-07:00

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

2010-08-27T22:06:00.000-07:00

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

2010-08-27T21:28:00.000-07:00

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

2010-08-05T04:32:00.000-07:00

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

2010-08-05T04:01:00.000-07:00

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

2010-07-18T07:18:00.000-07:00

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)

2010-05-18T05:45:00.000-07:00

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

2010-05-18T05:14:00.000-07:00

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

2010-01-31T06:09:00.001-08:00

Climate Change Increases Worldwide Lyme Distribution

2009-12-03T06:02:00.000-08:00

ILLNESS RISES WITH HEAT
Jim Efstathiou (22 November, 2009 - New York)Extracted direct from from website http://www.smh.com.au/environment/illness-rises-with-heat-20091121-is6b.html

KIDNEY

stones, malaria,
LYME DISEASE, depression and respiratory illness may INCREASE WITH GLOBAL WARMING , researchers at Harvard Medical School say.
Climate change from the burning of fossil fuels will add to risks to public health, said Paul Epstein, associate director of Harvard's Centre for Health and the Global Environment in Boston.
The centre, and groups led by the American Medical Association (AMA), presented data at a briefing in Washington yesterday as part of a call for action to curb emissions.
Global warming causes flooding, heatwaves and wildfires that worsen health, especially for children and the elderly, the Harvard researchers said.
"We expect an increase in hospital admissions for things like pneumonia, chronic lung disease, asthma and other respiratory diseases," said Cecil Wilson, the AMA's president-elect.

"Increased heat also increases the risk to people who have other diseases."

The AMA sent a letter to US President Barack Obama last week citing the "significant public health impacts" of climate change. The letter said children, the elderly,

people suffering from chronic diseases and the poor would be most affected.

Mr Obama has backed climate-change legislation in Congress but he and other leaders at an Asia-Pacific conference last week agreed that a binding global-warming accord is out of reach at next month's climate summit in Copenhagen.
With today's briefing preceding the Copenhagen conference, "we are hopeful that meeting will embody some of the concerns about health", Dr Wilson said.
Climate change is making parts of the United States warmer, raising the risk of kidney stones because of low urine volume linked to heat exposure, according to a study cited by the Harvard centre.
The portion of the US population in high-risk zones for kidney stones will grow from 40 per cent in 2000 to 56 per cent by 2050, and to 70 per cent by 2095, a 2008 study by the University of Texas found.
Costs would increase from $US900 million ($982 million) to $1.3 billion a year, 25 per cent more than current expenditures.
Warmer temperatures in New Mexico are contributing to the proliferation of mountain pine beetles, a pest that has killed 2.6million hectares of trees in the US, setting the stage for wildfires, according to the Harvard findings. Fires release air pollutants and cancer-causing chemicals, raising the risk of respiratory illness and lung disease.
Climate change also increases air pollutants such as ozone and sulphur dioxide, raising the risk of asthma, especially in children, said Jerome Paulson, of the Child Health Advocacy Institute in Washington.

The Harvard centre also found climate change will increase deaths from heatwaves, raise the incidence of waterborne diseases and spread afflictions such as Lyme disease and malaria.

Dislocation and job losses caused by changing climate might contribute to depression and anxiety disorders.

Tick picture from http://www.hhmi.org/news/fikrig20091120.html

Australian Lyme in the News - Nov 2009

2009-11-29T03:19:00.000-08:00

COFFS COAST MUM BATTLES LYME DISEASE
Graeme Singleton, 26 Nov, 2009 quoted direct from the Coffs Coast Independent

TICKED OFF ... Natalie Young (standing) said she was often covered with ticks during her working day as a conservation officer, but never realised they could infect her with Lyme Disease. She now wants others who work in the bush and on farms to be aware of the dangers posed by ticks.

NATALIE Young knows far more about Lyme Disease than she ever wanted to.

The Glenreagh mum was diagnosed with the chronic tick-borne infection earlier this year, but not before it had taken a stronghold in her body and turned her life upside down.
“You can’t believe what its like to live with Lyme Disease,” Natalie said.

“I’m forever tired and in constant pain. My muscles and nerves ache and I get migraines all the time.

“I wouldn’t wish it on anybody.”
Natalie first went to her doctor in January this year.
The 33-year-old was employed by the National Parks and Wildlife Service as a conservation officer, but now doubts whether she will ever work again.

“My hands and knees were aching, I was constantly fatigued, I had breathing difficulties because my throat was in spasms,” Natalie said. “One day my arm actually seized up for a couple of hours.”

Initially Natalie thought her illness was related to the Ross River Fever condition she’d earlier been diagnosed with, but after that along with heart disease, lupus, chronic arthritis, fibromyalgia and even multiple schlerosis had been ruled out, she pursued the possibility that ticks could have been responsible.

“I remember different times when I came home from working in the bush covered in ticks,” Natalie said.
“Once I had more than 100 ticks on me. I had to get a friend to pull them out of my back.”

Her diagnosis with Lyme disease came in late March after she had consulted a GP in Laurieton and had a series of blood tests.
They returned mixed results before positive antibody results from laboratories in Germany, The Untied States and Sydney.
Compounding the many challenges she faced was the fact that health authorities do not acknowledge the presence of Lyme Disease in Australia.

“It is a big problem in America and elsewhere in the world, but apparently not here,” Natalie’s husband Steve said.
“The authorities are only too happy to warn about the dangers posed by ticks to pets and livestock, but for some reason they won’t accept Lyme Disease occurs here.
Steve said if health authorities acknowledged that Lyme Disease exists in Australia, Natalie may have been diagnosed sooner.
“As with most diseases, early diagnosis enables more effective treatment,” Steve said.
”It has devastated her.
“I doubt whether she’ll ever be able to work again. I can now only hope that she can escape the constant pain she is in.”
Natalie is surprisingly more upbeat.
“My doctor is confident that while I will probably never fully recover, it shouldn’t get any worse for me.” she said.
“That I can live with.”

Humans estimated to contract Lyme 1/2 rate of Dogs

2009-11-07T07:32:00.000-08:00

Diagram from: http://underourskin.com/blog/

L-form (CWD) Bacteria ABX resistant genes found

2009-11-06T18:20:00.000-08:00

Lyme l-form to spirochete morph from: http://www.actionlyme.org/BOGUS_4.gif

BACTERIAL ANTIBIOTIC RESISTANCE GENES DISCOVERED
By Aleena Lakhanpal - 5 November 09 -Quoted direct from http://media.www.jhunewsletter.com/media/storage/paper932/news/2009/11/05/ScienceTech/Bacterial.Antibiotic.Resistance.Genes.Discovered-3824803.shtml

Antibacterial soap, hand sanitizer and antibiotics are all substances that we use in an attempt to kill bacteria that might make us sick. Whether we are concerned about getting strep throat, bacterial meningitis or something else, these prevention methods can offer protection.
However, some bacteria, such as those that cause Staph and MRSA infections, are becoming increasingly resistant to antibiotics. Since the 1930s, researchers have been aware that bacteria may be able to resist treatment because they can morph into the L-form, or bacteria lacking cell walls.

Until the 1980s, not much else could be known about the L-form, but now, researchers at the Bloomberg School of Public Health have used a wide variety of modern molecular tools to learn more about the origin and biological functions of the L-form bacteria.
Ying Zhang, a professor of molecular microbiology and immunology at Bloomberg, is the senior author of the study, which was published in PLoS ONE last month.

Not all bacteria can transform into the L-form, but those that can include Bacillus anthracis (anthrax), Treponema pallidum (syphilis), Mycobacterium tuberculosis (tuberculosis), Heliobacter pylori (stomach ulcers and cancer), Borrelia burgdorferi (Lyme disease) and Escherichia coli (food poisoning). Zhang's team used E. coli to create a culture of L-form bacteria.

Although it had been difficult to culture L-form bacteria before, Zhang and his team created a new method that more closely simulated the in vivo conditions in which these bacteria form.
"The presence of antibiotic stress is cell wall inhibiting, like penicillin," Zhang said. To prevent the cells from bursting because of this increased stress, Zhang's team added sucrose to the cell media.
This culture represented the mechanism that occurs in the body. "L forms are formed in response to stress," Zhang said. "They have a different mode of survival and replication from classical bacteria." The cell wall-deficient bacteria cluster together in the shape of a fried egg rather than the smooth, homogeneous appearance of wild-type bacteria cultures.

Not only are L-form bacteria difficult to culture and therefore study, but this "fried egg" cluster is part of what makes the L-form bacteria resistant to antibiotics, in addition to the fact that they do not have cell walls for commonly used antibiotics to disintegrate.

Once Zhang and his team were able to successfully culture L-form E. coli, they screened for and identified mutants that fail to grow at the L-form. From these mutants, they were able to discover a series of genes that were linked with the inability to grow in the L-form.
"These fall into four to five different categories involving extracellular matrix synthesis, membrane proteins, membrane biogenesis, DNA repair as well as iron metabolism and energy metabolism," Zhang said.
Their identification of these genes and their effect on L-form bacterial expression is a resounding discovery because it was impossible to do before, what with the difficulty of culturing the L-forms of various bacteria. Zhang noted, however, that although his team managed to create and study a culture of L-form bacteria, their study cannot be universal.
"What we can culture is only a small percentage - probably less than 1 percent - of all bacteria on earth," Zhang said.
"They exist in nature and grow easily, but we're limited to what we can grow and the form of bacteria that can grow. Bacteria can grow a variety of different forms even for the same species, and can change forms under different conditions. L-forms are one example of changing under antibiotic stress."

These L-forms of various bacteria may be the underlying reason for chronic resistant and recurring diseases, such as sarcoidosis, various forms of inflammatory bowel diseases and rheumatoid arthritis. Zhang is confident that there will be many practical applications of this discovery.

"It is possible, with our discovery of the L-form genes to develop new antibiotics and more effective ones that can be used with current ones as well as new vaccines to . . . allow these forms to be eliminated by the immune system," he said."

Nanoparticles cause damage despite Blood Brain Barrier

2009-11-06T01:33:00.000-08:00

Nanoparticle coupled synthesis & self-assembly vs "Rouleaux" Red blood cell pattern

Transcript directly quoted 6 November 2009 from ABC News Website

MORE EVIDENCE NANOPARTICLED DAMAGE DNA

Nanoparticles can be found in common household items including sunscreen and cosmetics. (7.30 Report)
Researchers in the United Kingdom have found some nanoparticles - which can be found in common household items - can damage DNA without even penetrating the cells.

They found the nanoparticles can indirectly damage DNA inside cells by transmitting signals through a protective barrier of human tissue.

The stunning discovery adds to a growing body of research highlighting proven and potential health hazards from the rapidly expanding universe of engineered objects measured in billionths of a metre.
Nanoscale products already widely in use range from cosmetics to household cleaning products and sporting goods.
But the new findings, reported in the journal Nature Nanotechnology, could also point to new ways in which nanotherapies might zero in on disease-causing tumours, say researchers.

They could even shed light on how poorly understood pathogens penetrate into human organs.

In laboratory experiments, scientists led by Dr Charles Case of Southmead Hospital in Bristol, grew a multi-layer 'barrier' of human cells to mimic specialised protective tissues found in the body.
For example one such barrier separates blood from the brain.
Underneath this layer, three-to-four cells thick, they placed human fibroblast cells which play a key role in the formation of connective and scar tissue.
And on top they put nanoscale particles of cobalt-chromium, an alloy that has long been used in the making of hip-and-knee-replacement joints, and more recently in drug-delivery mechanisms used inside arteries.

'As if it weren't there'

Earlier studies had shown that direct exposure to large quantities of the alloy could severely damage DNA is some cells and the researchers wanted to find out how well the laboratory grown barrier would protect the fibroblast cells below.
"We never imagined that it wouldn't," said Dr Case.

"But to our great surprise, not only did we see damage on the other side of the barrier, we saw as much damage as if we had not had a barrier at all."

At first, the researchers speculated that the tiny particles, barely 30 billionth of a metre in diameter, had slipped through microscopic cracks in the cellular blockade.
But there was no sign of the alloy on the other side and when the experiment was repeated with far larger particles, the result was essentially the same.

"We could only conclude that the DNA damage occurred after indirect exposure depending on a process of signalling between cells rather than the passage of metal through the barrier," said Dr Gevdeep Bhabra, a surgeon at Southmead and co-author of the study.
Professor Thomas Faunce from the Australian National University in Canberra says the study is significant.
"Nano-toxicological research has focused on looking at what happens if we put nanoparticles inside these type of cells," said Professor Faunce.

"What [this latest research is] saying is once nanoparticles are in the body they have a capacity to cause toxocological effects at a distance."

Previously, Professor Faunce has expressed concern regarding the over-use of nanoparticles in products such as nano-silver bandages and undergarments.
He says in light of this recent report any future investigation into the use of nanoparticles and their associated levels of toxicity may need to be rethought.
His views were echoed by the researchers themselves and experts not involved in the study.
"What it tells me is that the precaution with which some scientists and regulators say we should proceed is the right way to go," said Professor Vyvyan Howard, a pathologist at the University of Ulster who founded the Journal of Nanotoxicology.

Prion diseases

But the newly uncovered mechanism holds promise too.
"The first exciting question is, can we deliver novel therapies across barriers without having to cross them?" said Professor Ashley Blom, an orthopaedic surgeon and researcher at the University of Bristol.

"There are also implications as to how nanoparticles that we all have in our bodies might act across membranes - small particles like prions and viruses may use some of these mechanisms.

"This opens up a whole new field of research."
Prion diseases occur when a mutated form of the prion protein runs amok, destroying brain cells.

Testing

Professor Howard says when considering the safety of nanoparticles, one must distinguish between medical and broader industrial applications.
New drugs are carefully tested, reducing the chances of widespread harm. And even if nanodelivery and imaging systems turn out not to be risk-free, that does not necessarily mean they should not be used.
"Depending on the kind of disease you have, you will accept some very nasty therapies," he said. For example a chemotherapy for cancer.
"But there is a world of difference between accepting a therapy under informed consent and involuntary exposure."
He pointed out most industrial uses are not regulated at all."

Quoted from ABC Website:
http://www.abc.net.au/news/stories/2009/11/06/2735612.htm?section=justin

Pathology picture from: http://www.sheerorganics.net/Sheerprevention/Blood%20Test%20without%20Green8.png

Nanoparticle picture from: http://www.nanopicoftheday.org/2004pics/May2004/NPChains.htm

Australian Strongyloides parasite parallels to Lyme

2009-10-13T04:35:00.000-07:00

Cartoon from site: http://farm1.static.flickr.com/77/203046826_96475380c0_o.gif

An online BLOG site (5 Aug 2008) by U.S. Doctor known as "LymeMD" confirms that "...doctors are afraid to treat this disease appropriately." He recently (11 October, 2009) described how patients are suffering from LYME DISEASE and are being given inadequate antibiotic therapy (if diagnosed) as per current IDSA Treatment Guidelines with devastating consequences:

THREE WEEKS OF DOXYCYCLINE

"Childhood friend's daughter in ICU for two weeks with-- Lyme disease---It is one thing after the next."
Keith Olbermann on health care.
THREE WEEKS OF DOXYCYCLINE.
"I just saved your life (diagnosing Lyme disease in friend's wife)." Larry David.
THREE WEEKS OF DOXYCYCLINE.
"I heard you never get over Lyme disease; I have a friend in a wheel chair; so many people are so sick, its a very scary disease." A patient.
THREE WEEKS OF DOXYCYCLINE.
"I used to function at a high level (computer engineer), now I can no longer do my job" A patient.
THREE WEEKS OF DOXYCYCLINE.
"I have been to 40 doctors. No one ever took me seriously--thank God you are listening to me."
THREE WEEKS OF DOXYCYCLINE.
" I would like to help you--but we have a two tier test--you never had a rash--NIH studies--
IDSA recommendations--and CDC--I can't treat you I might get in trouble--those ILADS, LLMDS are--I don't know, out there--you don't want to miss another "real" diagnosis like fibromyalgia or depression."
THREE WEEKS OF DOXYCYCLINE."

DOCTORS 'INTERFERED WITH' OVER PARASITE TREATMENT
By Katrina Bolton
Posted Tue Oct 13, 2009 10:30am AEDT

Dangerous parasite rife in NT

"It's an easy enough test ... but I was told not to do that too often" ... Dr Len van Ingen.
Two doctors say the Northern Territory health department stopped them from treating people who tested positive to a parasite that can breed in the body indefinitely.
One doctor, who asked not to be named, says their clinic was told it could no longer prescribe the drug for treating strongyloides.
Another doctor, Len van Ingen, who used to be the medical superintendent at Gove Hospital, says he was told he could not test people for the parasite unless they were already clearly sick.
He says he felt his professional judgement was interfered with.
"It's an easy enough test to check for strongyloides but I was told not to do that too often," he said.
"Basically the line was there are other more significant diseases that they want to concentrate on."
He says he decided to start actively testing people for strongyloides because of the sheer number of people who seemed to be sick with with it.
"[They had] symptoms of unexplained cough, abdominal pain or general ill health," he said.
When he tested them, more than 50 percent of people returned positive samples and when he treated them, he says the community became a lot healthier.
He says the department's instructions not to give treatment until people are visibly sick goes against the policy of the federal immigration department.
"I'm aware that if people come in from overseas, like refugees, the public health department specifically looks for infestation with strongyloides and treats them," he said.
"This of course is a totally different situation in the Northern Territory where they [do] not look and [do] not treat if they don't have to."
The health department has issued a statement saying that people judged to be ill with strongyloides are given the appropriate treatment, and cost is not a factor.

Quoted direct from ABC Website: http://www.abc.net.au/news/stories/2009/10/13/2712432.htm?section=justin

DEADLY PARASITE 'HYPE'BEMUSES AMA
By Gina Marich

Posted Mon Oct 12, 2009 10:43am AEDT
Updated Mon Oct 12, 2009 10:48am AEDT
Strongyloides parasite
'Silent killer' ... the Strongyloides parasite as seen through a microscope. (ABC TV)

The Australian Medical Association says the issue of a deadly parasite common in Northern Territory Aboriginal communities has been blown out of proportion.
Strongyloides is a small parasitic worm that burrows under people's skin and into the heart, lungs and gut and can cause serious illness or death.
Doctors and Aboriginal groups have raised concerns that the parasite is being ignored.
But the AMA's Northern Territory president, Dr Paul Bauert, says medical professionals have been aware of the parasite for a long time now and routinely treat people who have it.
"People who have been here a long time who are aware of the parasite and have been not only treating the parasite but using prophylactic medications to prevent infection are a little bit bemused by all the hype about it at the moment because we are aware of it, we do treat it," he said.

Quoted direct from ABC Website: http://www.abc.net.au/news/stories/2009/10/12/2711241.htm

HEALTH DEPT WARNED TO TAKE DEADLY PARASITE SERIOUSLY

Posted Sun Oct 11, 2009 10:08am AEDT
Updated Sun Oct 11, 2009 11:24am AEDT
Strongyloides parasite

Richard Trudgen says the parasite is common among Indigenous people living in the Territory, but many do not realise they have it. (ABC TV)
The Aboriginal Resource and Development Service in the Northern Territory says a deadly parasite is going undetected, partly because Territory Heath Department lab technicians do not want to carry out the test.
Strongyloides is a small parasitic worm that burrows under people's skin and moves into the heart, lungs and gut.
The service's Richard Trudgen says the parasite is common among Indigenous people living in the Territory, but many do not realise they have it because there is no routine testing.
He says his organisation has been lobbying the Territory Government to do something about it for many years, to no effect.
"We're asking the professionals in the Health Department to take strongyloides seriously, to do exactly what they would do if this was a disease in the northern suburbs of Darwin," he said.
"Aboriginal citizens are sick of being sick, and they're sick of dying."
Mr Trudgen says the Health Department refuses to take the issue seriously.
"Blood tests will show you a positive reading or a semi-positive and there's all sorts of arguments that that's not conclusive, but as far as I'm concerned if someone comes back with a positive blood test or any elevated antibody test you can go on and test faeces and all that but that person should just be treated," he said.
"We know that it is affecting people in central Australia and is in Alice Springs and so on.
"We've also heard that tourists now coming to the Northern Territory have contracted it and it'll probably become an issue then soon as we say that.
"But until it's a notifiable disease also we don't know just how many people are dying of this disease."
The Territory Health Department says it is waiting on federal funding to do a pilot screening program.
The department says it is in the process of changing its guidelines, and that other diseases are more pressing.

Quoted direct from ABC Website: http://www.abc.net.au/news/stories/2009/10/11/2710662.htm

DOCTORS CONCERNED OVER KILLER PARASITE

By Katrina Bolton
Posted Sat Oct 10, 2009 6:00am AEDT
Updated Sat Oct 10, 2009 9:16am AEDT
Strongyloides parasite
'Silent killer' ... the Strongyloides parasite as seen through a microscope. (ABC TV)

Doctors are alarmed about a "silent killer" infecting people in Australia's north amid claims authorities are failing to take the threat seriously.
Strongyloides is a parasite that crawls in through intact skin and breeds in the body indefinitely.
The available evidence suggests more than a third of people in some remote Northern Territory communities have it.
It makes people sick, and if they are given the wrong drugs it can be fatal.
The Immigration Department says it tests refugees and humanitarian migrants before and after they come to Australia, and if they test positive, they are treated.
But the current manual the Northern Territory Health Department gives doctors says to treat people with the parasite once they show symptoms.
It is advice that goes against instructions given in the medical textbook Harrison's, which says "even in the asymptomatic state" it must be treated because of the potential for fatal "hyperinfection".
The territory's guidelines are in the process of being changed, but Professor Rick Speare from James Cook University feels the lack of action on strongyloides amounts to institutional racism.
"I think that would be quite hard to defend against to say there hasn't been," he said.
"The evidence is there."

Silent killer

Elcho Island elder Djiniyini Gondarra says he was hospitalised several times before doctors tested for strongyloides.
"This is another disease, a silent killer that is happening now," he said.
He later found two other members of his family were infected.
"What's wrong with us that this is not being really seen seriously?"
The territory's Health Department believes other diseases are more important, and that limited health dollars are better spent elsewhere.
"There are other, more important priorities," the Health Department's Dr Peter Markey said.
"There's diabetes, there's heart disease, there's rheumatic heart disease which kills people."
Blood tests from government clinics do not routinely test for strongyloides, and post mortems do not either.
Deaths associated with the disease have been documented in Central Australia.

Burrows through skin

Dr Wendy Page who has worked in communities for years says there is a culture within the department of "don't look, don't find".
Data she has collected at the Miwatj Health Clinic at Nhulunbuy suggests the prevalence is near 40 per cent.
Strongyloides travels in faeces and in the soil or grass where sanitation is bad.
It burrows through intact skin and crawls up into the heart and lungs, before being coughed and swallowed into the gut, where it breeds indefinitely.
One Australian study tracked returned prisoners of war, and found they were still carrying strongyloides 35 years later.
Medical texts list symptoms from rashes to abdominal pain or breathing difficulties, and say if people with strongyloides are given immuno suppressive drugs, it can be fatal.
West Australian pathologist Miles Beaman has seen cases of grey nomads bringing strongyloides back from their travels in the territory and it going undiagnosed.
"Some of those patients have even seen gastrointestinal specialists and still the diagnosis hadn't been made," he said.
The manual the territory government gives doctors spells out the hope that strongyloides will die out "with improving socioeconomic status, as the environmental reservoir diminishes and the infected population ages and dies".

Coordinated campaign

Other doctors suggest that is not going to happen anytime soon, and that a coordinated campaign would be needed to rid the communities of the parasite.
Health Minister Kon Vatskalis believes a special education campaign is not needed because general hygiene campaigns should get the necessary message across.
"We continue to run campaigns about hygiene, washing hands, washing vegetables, don't let dogs come into the houses," he said.
The Government wants to take part in a trial in conjunction with the Menzies School of Health Research that would do mass screening and treatment at one community on Elcho Island.
It has applied for but is yet to secure federal funding.
Mr Vatskalis says if the funding application is not successful, he will consider helping pay from it from territory funds.
But sufferers like Djiniyini Gondarra say the disease needs to be made notifiable and routinely tested for.
"Strongyloides is serious," he said. "And it's not been thought about, not been seriously taken."

Fellow sufferer Nancy Bukalatjpi puts it in just three words: "Help us, please."

Quoted direct from ABC Website: http://www.abc.net.au/news/stories/2009/10/10/2710313.htm

Swine Flu Perspective on a Hidden Lyme Pandemic

2009-10-04T06:28:00.001-07:00

[LYME DISEASE]is one of the fastest growing infectious diseases in the United State making it more prevalent than AIDS, yet is it also one of the most widely misdiagnosed. Those suffering from Lyme disease are often misdiagnosed with maladies ranging from chronic fatigue syndrome to multiple sclerosis to Lou Gehrig's Disease."
Except from an article that quoted the 'Under Our Skin' Documentary

"W Lee Cowden, M.D., of Richardson, Texas, a world-renowned consultant and integrative medicine educator; states that "There are very few symptoms where you shouldn't consider Lyme, especially given that
A QUARTER OF THE U.S. POPULATION
may be affected. More than 50% of chronically ill people may have Lyme contributing to their condition." Dr. Whitaker, who specializes in advanced testing methods for Lyme, suspects that the great majority of people in the U.S. are infected with Bb because the hundreds of tests she performs every year now invariably come out positive.

All the other clinicians with whom the authors spoke agreed that Lyme has reached epidemic proportions. How is this possible? Obviously 25% of Americans haven't been bitten by one of a select few species of ticks.

THE ANSWER IS THAT LYME IS NOT TRANSMITTED JUST BY TICKS.

"Of the more than 5,000 children I've treated, 240 have been born with the disease," says Dr. Jones, who specializes in Pediatric and Adolescent Medicine. "Twelve children who've been breast-fed have subsequently developed Lyme. Bb can be transmitted transplacentally, even with in vitro fertilization; I've seen eight children infected in this way. People from Asia who come to me with the classic Lyme rash have been infected by fleas and gnats."

Gregory Bach, D.O., presented a study on transmission via semen at the American Psychiatric Association meeting in November 2000. He confirmed Bb DNA in semen using the PCR test (Polymerase Chain Reaction). Dr. Bach calls Bb "a brother" to the syphilis spirochete because of their genetic similarities. For that reason, when he treats a Lyme patient in a relationship, he often treats the spouse; otherwise, he says, they can just pass the Bb back and forth, reinfecting each other.

Dr. Tang adds other avenues of infection: "Transmission may also occur via blood transfusion and through the bite of mosquitoes or other insects." Dr. Cowden contends that unpasteurized goat or cow milk can infect a person with Bb."

Table from: http://www.ilads.org/files/harvey.pdf
Representative Diagram at top from: http://pharmagossip.blogspot.com/
Quoted Study Extraction from: http://www.avonhistory.org/bug/l13.htm

Spiroplasma - Creutzfeldt-Jakob disease in Australia

2009-09-16T06:06:00.000-07:00

Look familiar? Sounds alot like spirochete + mycoplasma. These Spiroplasma travel in the same spiral drilling motion as spirochetes however hide their protein (identifing markers) from immune system etc by essentially turning inside out. Lyme Borellia has been shown to turn itself inside out and form spheroplast or cystic form in a hostile environment - immune or antibiotics etc.

These invasive pathogens are so dangerous that surgical equipment standard sterilization doesn't work so notification must be provided. They have not proved blood transfusion transmission yet...though infection has been confirmed from organ transplant studies.

Creutzfeldt-Jakob disease (looks like evolved lyme to me...and it comes from arthropod (incl ticks), insects and vertebrates, and seems to have similar vector life cycle patterns from what I gather. The 2009 Australian Health Report has implemented a strategy to help monitor this disease:

Creutzfeldt-Jakob disease (CJD) is a rare disease of the central nervous system, which results in death after a relatively rapid course of muscle weakness and dementia. There is no definitive diagnostic test and no known cure.

CJD occurs sporadically in the community with an incidence of one case per million population per year and may have a symptom free incubation period of more than 30 years. CJD is also known to have been transmitted as a result of certain medical interventions, such as human pituitary hormone treatment. This iatrogenic form is similar clinically to sporadically occurring CJD. The symptom free incubation period of this form of CJD ranges from 4 to 30 years with an average of 15 years based on international experience...

For more info visit: http://www.health.gov.au/internet/main/publishing.nsf/Content/health-pubhlth-strateg-phi-index.htm

Creutzfeldt–Jakob disease - From Wikipedia, the free encyclopedia

"Transmissible spongiform encephalopathies (TSEs, also known as prion diseases) are a group of progressive conditions that affect the brain and nervous system of many animals, including humans. According to the most widespread hypothesis they are transmitted by prions, though some other data suggest an involvement of a Spiroplasma infection.[1] Mental and physical abilities deteriorate and myriad tiny holes appear in the cortex causing it to appear like a sponge (hence 'spongiform') when brain tissue obtained at autopsy is examined under a microscope. The disorders cause impairment of brain function, including memory changes, personality changes and problems with movement that worsen over time. Prion diseases of humans include classic Creutzfeldt-Jakob disease, new variant Creutzfeldt-Jakob disease (a human disorder related to mad cow disease), Gerstmann-Sträussler-Scheinker syndrome, fatal familial insomnia and kuru. These conditions form a spectrum of diseases with overlapping signs and symptoms..."

What If 20% were Lyme Borreliosis?

2009-08-21T23:48:00.000-07:00

...AND IF A GREATER PROPORTION'S CAUSED BY LYME? STUDIES INDICATE:

...90 - 100% CFS / ME PATIENTS HAVE LYME
...90% AUTISM ESTIMATED LYME INDUCED
...7 out of 10 ALZHEIMER'S BRAINS FIND LYME

Treating doctors tell us that there are no definitive tests or symptoms that differentiate Lyme disease from the other conditions. For example, a MULTIPLE SCLEROSIS case can look just like a LYME DISEASE case. The difference is there are fairly effective treatments for Lyme disease."

USA Conjectural Lyme Borreliosis Diagram above and modified Lyme Symptom List below from: http://seranogroup.org/index.php

Symptom-------------------Specificity to ----Prevalence In Lyme---Associated
Description-------------Lyme Borreliosis---Borreliosis Possible--Infection

Cardiovascular
Blood Clots/Stroke....................Low.................Low
Fainting.....................................Low.................Low
Frequent, easy bruising.............Low.................Low
Heart flutter, murmurs..............Medium..............Medium
Heartbeat thuds (PVCs)............Medium...............Low
High blood pressure.................Low.................Low
Irregular heartbeat..................Medium...............Low
Pulse races with slight exertion..Low.................Low
Slow pulse................................Low.................Low
Cognitive
Confusion(common mental tasks)..Low.................High
Difficulty articulating thoughts....Low................Medium
Difficulty understand documents..Low................Medium
Disorientation, easily gets lost...Medium..............Medium
Easily loses/misplaces objects..Medium...............High
Forgets how to do routine tasks.Medium..............Medium
Inability to multi-task...............Medium...............High
Long term memory loss................Low.................Low
Short term memory loss...............Low.................High
Unintended word substitutions......Medium..............Medium
Word reversals........................Low................Medium
Dematological
Rash on limb not near tick bite.....Low.................Low
Body rash not near tick bite........Low................Medium...........Babesia
Bullseye rash at site of tick bite..High................Low
Generalized itching....................Low.................High
Recurrent itch @ specific location..Low................Medium
Raised scaly rash......................High................High
Rash with stretch mark appearance..Low.................Low...........Bartonella
Scalp rash not near tick bite........Medium...............Low
Endocrine
Chills...................................Medium............Medium.........Babesia
Fluid retention......................Medium...............Low
Hot Flashes...........................Medium...............Low.............Babesia
Unable retain fluid-dehydration.Medium...............Low
Loss of appetite....................Low................Medium
Loss of appetite....................Low................Medium
Loss of sex drive..................Medium...............Low
Night sweats........................High................Low.............Babesia
Unexplained fevers................Medium...............Low.............Babesia
Unexplained hair loss.............Medium..............Medium
Unexplained increase sex drive..Low.................Low
Unexplained weight gain...........Medium...............Medium
Unexplained weight loss ..........Medium................Low
Unusual fatigue after eating........Low................Medium
Unusual food craving..............Medium...............Medium
Gastrointestinal
Abdominal cramps....................Low.................Low
Backwash/reflux.......................Low.................Low
Bloating..................................Low.................Low
Constipation...........................Low.................High
Diarrhea.................................Low.................High
Upset stomach.......................Low................Medium
Vomiting.................................Low.................Low
General
Extreme fatigue....................Medium................High
Flu-like illness(nonseasonal)..High.................High
Flu-like illness(tick bite <2wks)..High................Medium
Frequent respiratory congestion..Low.................High
Frequent urination..................Low.................Low
Increased allergies................Medium...............High
Irregular menstrual cycle...........Low................Medium
Painful urination.....................Low.................Low
Frequent bacterial infections.....Medium...............Medium
Frequent fungal infections........Medium...............Medium
Frequent viral infections.........Medium...............Medium
Repeated/continual sore throat......Low.................Low
Repeated sinus infection..........Medium................High
Repeated urinary infection........Medium................Low
Shortness of breath...............Medium................Low............Babesia
Swollen glands in armpit..........Medium................Low
Swollen glands in groin...........Medium................Low
Swollen glands in neck............Medium................Low
Unexplained menstrual pain........Medium................Low
Unusual response to alcohol........High................Medium
Unusual response to exercise......Medium................High
Musculoskeletal
Body-wide muscle pain.............Medium................High
Chest pain............................Low..................Low
Creaking, crackling joints........Medium...............Medium
Foot or Heel pain.................Medium................Low............Babesia
Joint pain............................Low..................High
Migrating joint pain...............High................Medium
Muscle cramps.....................Medium...............Medium
Spinal Column Sensitivity......... High.................Low
Stiff neck........................Medium................High
Stiffness in single joint.........Medium...............Medium
Neurologic
Testicular pain...................Medium................Low
Burning mouth.....................Medium...............Medium
Decreased hearing.................Medium................Low
Difficulty chewing................Medium................Low
Difficult urination(start/stop)....Low..................Low
Difficulty swallowing.............Medium................Low
Diminished reflexes................Low..................Low
Facial paralysis...................High................Medium
Facial twitches...................Medium................Low
Feeling of impending blackout.....Medium................Low
General tension-type headache......Low..................High
Gum pain..........................Medium................Low
Headache...........................Low..................High
Hypersensitive reflexes............Low..................Low
Increased motion sickness.........Medium................Low
Jaw pain..........................Medium................Low
Migraine (one-sided) headache......Low..................High..........Babesia
Migrating tooth root pain.........Medium................Low
Numbness or tingling..............Medium................High
Overly sensitive to sound.........Medium................Low
Poor balance, dizziness...........Medium................Low
Pressure in head..................Medium................Low
Random burning/stabbing pains......High................Medium
Restless legs.....................Medium................Low
Ringing/buzzing in ears...........Medium................High
Seizures..........................Medium................Low
Skin pain.........................Medium...............Medium
Slurred/slow speech...............Medium................Low
Stammer/stutter...................Medium................High
Tremors/shaking...................Medium................Low
Unexplained gagging................High................Medium
Weakness/partial paralysis........Medium................High
Ophthamological
Blindness/optic neuritis...........Low..................Low
Blurry vision.....................Medium................Low
Decreased peripheral vision.......Medium................Low
Double vision.....................Medium................Low
Drooping eyelid....................High.................Low
Dry eye............................Low.................Medium
Eye pain...........................Low..................Low
Flashing lights in vision field....High.................Low
Floaters in vision field...........Low.................Medium
Fluttering eye movement............Low..................Low
Red eyes...........................Low.................Medium
Sensitive to light.................Low.................Medium
Teary eye..........................Low..................Low
Temporary blindness...............Medium................Low
Psychological
Absence of dreams..................Low.................Medium
Aggression........................Medium...............Medium
Difficulty falling asleep.........Medium................High
Difficulty staying asleep.........Medium................High
Hears things not present...........High.................Low
Irritable.............................Low..................Low
Mood swings........................Low.................Medium
Obsessive/compulsive behavior......Low.................Medium
Overly sensitive, cries easily....Medium...............Medium
Panic/anxiety attacks.............Medium...............Medium
Paranoia.............................Medium................Low
Senses someone near(not present)...High.................Low
Sleeps unusually long.............Medium................Low
Smells things not present..........High.................Low
Suicidal thoughts.................Medium................Low
Unusual depression................Medium...............Medium
Vivid dreams or nightmares.........Low..................Low

Lyme Brain Fog - 9mth Neurologist Wait

2009-08-03T05:48:00.000-07:00

POOR CONCENTRATION, MEMORY LOSS, VERTIGO, LANGUAGE LOSS, DISASSOCIATION,TENDER SCALP, VISION DISTURBANCES, NERVE ABNORMALITIES, DIFFICULTY MULTITASKING, COMPREHENSION ISSUES, MIGRAINES, EYE PAIN, LIGHT & SOUND SENSITIVITIES...

AFTER raising my neurological concerns with two specialists, I finally persisted with my GP for a referral to have an initial appointment with a visiting Neurologist, who's first appointment available is in April 2010! Obviously I will try and get a referral for a City based appointment, that may shave a little wait off our first introduction. It seams clear that if I have enough brain function to know something is wrong, then obviously something isn't wrong enough. Sorry but my experiences with Australia's health care has been a whole lot of bad mixed with a small portion of good.

A Lyme Patient's Brain:BEFORE ..............................2YRS AFTER TREATMENT

LYME HEARING 30 JULY 2009:

8:30 a.m. ET --CALDA CEO Lorraine Johnson showed her own SPECT scans, showing major changes in her brain before and after long term antibiotic therapy. She presented results of CALDA's survey of 3,000 Lyme patients, indicating that more than half of respondants remained ill under the IDSA guidelines. Of those, more than 60% improved with additional treatment. She compared Lyme treatment (per IDSA--no options in treatment) with cancer and other diseases which allow for a wide variety of treatment options. Several panel members asked her questions, which allowed her more time to discuss insurance denials."

Quoted from: http://www.lymedisease.org/news/idsa_lyme_hearing/156.html Bottom SPECT pics from: http://www.idsociety.org/WorkArea/showcontent.aspx?id=15058

1 in 100 Australians Autistic with up to 90% Lyme Induced

2009-07-23T05:49:00.000-07:00

'ONE IN 100'

Professor Margot Prior says a second independent study from the university [Australia's La Trobe University] found the figure was close to one in 100.

"Well we had 19 autistic children in a sample of 1,900. So that's one in a 100. So again, we believe that the prevalence is certainly greater for whatever reason," she said.

"And of course this is a population, you know, a non-clinical sample, just from the population out there. "

It is still unclear whether there are more cases of autism or whether doctors are just more aware of the condition and likely to pick it up.

While a large study in the United States is looking at possible triggers in the environment, Dr Dissanayake says it is too early to tell what is behind the increase."

http://www.abc.net.au/news/stories/2009/07/23/2634744.htm?section=justin

Lyme Disease is being touted as a primary cause of autism (purportedly 90% of children with autism are infected with Lyme Disease). I am amazed by this one because I did not know that Lyme Disease was that widespread and did not know that data had been kept correlating LD in some way with Autism. Meanhwile there is actually a Lyme Induced Autism Foundation which has been formed by parents and they are hosting a physician's think tank session January 26-28 in San Diego. Lyme Induced Autism?...Currently, several doctors have stepped forward talking about this. Dr. Warren Levin of Vienna, VA recently appeared on the online radio show on www.autismone.com hosted by Duncan called "The Lyme-Autism Connection". He stated that of the 10 children with autism he tested for Lyme disease, 100% of them also came back positive for Lyme disease."

For further information on Lyme Induced Autism go to http://www.lymeinducedautism.com

http://stanford.wellsphere.com/autism-autism-spectrum-article/lyme-disease-induced-autism/335624

Autism Graph from http://media.sacbee.com/smedia/2009/06/27/22/165-7W28AUTISM.xlgraphic.prod_affiliate.4.gif

2 Million USA Lyme cases per year (CDC reports only 20,000) World wide epidemic...but not in Australia???

2009-07-11T01:56:00.000-07:00

When Brian Fallon did a study at Columbia University, which was just done. I forget the exact number, but it was something like he screened through 3700 people to get 37 positive (CDC positive) IGG. Now the number that you see from the CDC is a 10 times difference, like 20 000 is really 200,000. That’s not true according to Brian’s study, it’s 100 times.

IT'S ACTUALLY 2 MILLION PEOPLE PER YEAR THAT ARE GETTING THIS DISEASE."

Stated Dr Richard Horowitz, who presented on the "Under Our Skin" Panel Discussion on 27 April 2008, as part of the Tribeca Film Festival behind the screen series viewed from:

http://www.tribecafilm.com/news-features/features/Watch_Under_Our_Skin_Panel.html

Richard Horowitz, MD {Vice President ILADS}
Information on his background was found at: http://www.ilads.org/about_ILADS/officers_directors.html

"Dr Richard Horowitz is President of the International Lyme and Associated Diseases Educational Foundation (ILADEF), and he is a founding board member of ILADS. He is a board certified internist and medical director of the Hudson Valley Healing Arts Center in Hyde Park, N.Y., an integrative medical center which specializes in the treatment of Chronic Lyme Disease and other tick-borne disorders. He has treated over 11,000 Chronic Lyme patients in the last 20 years, and has published on the role of co-infections and toxins in Chronic Lyme Borreliosis. He was awarded the Humanitarian of the Year award by the Turn the Corner Foundation for his dedication and research in the treatment of Lyme Disease."

Paralysis Tick Distribution map: http://www.tickalert.org.au/distribu.htm#Geographic

11 Years with Lyme Disease acquired from Australia

2009-07-10T00:24:00.000-07:00

Borrelia pics http://microbewiki.kenyon.edu/index.php/Borrelia#Phages.

ELEVEN YEARS have now past since a tick bite in the AUSTRALIAN tropics left me in poor health along with a classic bulls-eye rash internationally indicative of Lyme disease. However the Australian medical community failed to put the pieces together and I was deemed cause and cure unknown, listed as autoimmune, then legally disabled by my 21st Birthday. To mark this my 11th year on the lonely trail of chronic illness and newly learned misdiagnosis, I avow my current understanding of Lyme Diseases which I have been intensely researching for the last 3 months since learning the cause of my infliction.

“Lyme” which is the common term for a Borrellia spirochete bacterial infection, was named after a town in Connecticut in north-eastern USA. This is where a strange arthritis was noted to have inflicted the community during the 70’s. It was found that a number of ticks in the area were infected with this spiral shaped bacteria as frequently depicted, which is a slower replicating cousin of Syphilis, and also resembled African relapsing fever.

In 1982 Willy Burgdorfer, identified one strain of Lyme, it was named Borrellia burgdorferi after his discovery. Since then over 300 species is known word wide, however only 10 species or so have testing much of which is unreliable and more sensitive testing is very expensive. Because the bacteria changes form and is especially capable from hiding from the immune system, it is not unknown for some people who have tested negative on 10 Lyme tests to then show positive.

Mosquitoes, biting flies and various tick species (and other arthropods) have been documented to carry Lyme bacteria (and others disease causing organisms) and likely carry a role in disease transmission to hosts. It is difficult for some labs to culture the bacteria; however an article dated 19 May 2009 titled “UNF professor works to unlock Lyme disease’s mysteries” discusses Prof Kerry Clark from North Florida’s recent techniques used to demonstrate positive Lyme results from previously negative specimens.

Migratory birds, lizards, mammals including humans are some of many animals host this disease life cycle. Some are carriers with no symptoms which is concerning for imported stock into Australia including Deer and Texas Longhorn bullock. The longhorn was notorious in the southern states of USA for infecting other cattle and other animals with Master’s Disease also known as Southern Tick Associated Rash Infection (STARI) in the area and there was even stock route restrictions applied to Texas to try and curve the Lonestar Tick invasion.

Ed Master’s the discoverer fought hard to get Masters Disease/STARI a Borrellia spirochete to also be recognised a new Lyme species (Borrellia lonstarii) to bring to light the magnitude of the epidemic prior to his sad passing away last month. In Feb 2009, an article “Discovery of new Lyme strains invalidates current tests” from http://underourskin.com/blog/?p=127

Benjamin Luft, M.D., Professor of Medicine at Stony Brook University Medical Center, discovered that four highly virulent mutations of Borrelia burgdorferi, the spirochete that causes Lyme disease, may account for the alarming increase in cases for the past 20 years. Luft’s investigation and findings were initially reported in Emerging Infectious Diseases.

This genetic drift of the organism could explain why current Lyme disease tests, which were defined nearly two decades ago, are missing approximately 75% of the confirmed positive Lyme cases, according to a recent Johns Hopkins study.
Pam Weintraub, author of “Cure Unknown: Inside the Lyme Epidemic,” recently interviewed Luft for the Psychology Today website about his findings:

“What we will find,” says Ben Luft of Stony Brook, “are proteins we never tested for on our ELISAs and Western blots—proteins we were never even aware of. But they will be the critical markers for invasive, infectious Lyme disease. Perhaps people who test negative on the old tests will become positive when we look for the right markers.”

Some viruses including “Sindbis” (which I tested positive for) and also stress from migration has been shown to reactivated Lyme bacteria in many birds that also carry ticks including the Lonestar species. Hosts infected with any of the Borrellia spirochete bacteria have the potential to have their blood, brain, central nervous system and all bodily tissues invaded, just as Syphilis has been documented as being as accomplished in.

Is Lyme also sexually transmitted? This is yet to be determined. There is evidence of Lyme surviving blood transfusion processes, and organ transplants. Lyme has been documented to have been passed congenitally in-utero and via breast-milk from mother to child and has caused foetal death. There is a strong disposition for autoimmune mothers to have children within the autistic spectrum. There are also many cases of autism recovery from long term antibiotic protocols, suggesting a possible infectious causal link to many syndromes, such as autoimmune or degenerative disorders including Alzheimer’s Disease. Many trailing Antibiotics have seen improvement in conditions recently.

The bacteria morphs between spiral form (that can cloak itself with your own proteins or create ones that mimic it which may lead to a state of autoimmunity in the body) to an cell wall free state known as L-form (which invades cells) and also a cyst form which continues to replicate while laying dormant.

Cysts around throughout the body as a defence mechanism and have been found in hostile environments such as human saliva. In animal studies, cyst forms have been demonstrated to convert back into spirochetal form when serum favourable to the bacteria was added.

Tick-less transmission has been document in controlled mouse studies, where infection has crossed to non infected mice, though this could have had numerous pathways such as urine, blood, saliva or sexually.

Mice studies have also been conducted where alziemer’s plaques were induced by infecting the mice with borrellia spirochete. There are some pretty convincing scientific studies if you google “lyme alziemer’s disease” that demonstrating the correlation, if you can handle the jargon.

Australia apparently is not an endemic region for Lyme Disease or it’s carrier the American Lonestar tick. Well, I came across a travellers log from Western Australia where the writer documented and photographed a ‘bush tick’ in the area and commented lucky there’s no Lyme in Australia. This drew my attention as it looked identical to the lonestar tick I had been researching about. Not the one with the well known star on its back, but the male version.

Just because there is inadequate vector surveillance, lack of research, and poor laboratory testing procedures, doesn’t mean that it is not a widespread unidentified problem in Australia, just as it is worldwide. It has higher infection rate and severity of disease than AIDS and there is no excuse why there should not be an equally high level of government funding allocated for research and public education for Lyme or as our Health Department calls it “Lyme-Like”.

The Lyme documentary "UNDER OUR SKIN" recently commenced Cinema screenings in America. I would highly recommend gaining access to this video when available.

My Lyme Symptoms - Stage III (Dec 01 – Apr 09)

2009-07-04T22:25:00.000-07:00

This photo depicts how my hands looked for around a year before presenting to my initial Rheumatologist appointment in Dec 2001. More blood tests were ordered by my Rheumatologist and presumed MCTD. Brutal introduction to chronic disease and treating symptoms, and to adjust to the fact as there is no cure. Prednisone 10mg and Plaquenil 400mg a day was to commence during my next appointment, 2 months later, and I was informed to avoid sunlight and come back the following month.

I noticed rapid deterioration of my skin at that time. It turned thin and translucent, it aged really fast. I would scar badly as it now took my body a lot longer to respond to injury and to commence healing. If I burnt my hand, it wouldn’t blister for 3 days, and then it would take a month to heal. My joints inflammation increased again and I increased my prednisone to 15mg a day.

I noticed an increase in little red blisters I would get on my arms mainly and then got a terrible case of shingles on my right arm radiating from my back to my 3 small fingers, due to the steroids. I now know blister increase means to low immune system and monitor myself better. For the six weeks I had shingles followed by 12 months of unbearable post neuelgia. Tramadol was the best to give relief at the time and I continue to use this a day or two almost monthly when I have bad symptoms and pain that I cannot sleep. Neurontin helped though my CK jumped to 1000 which is toxic to my liver so I ceased that drug. When I was on it I had strange black-head like / hair follicle king of skin eruptions, mainly where I had scars from my shingles. I don’t know what that was about possibly dead nerves or toxin accumulation or simply natural exfoliation after 6 weeks painting sores with a pink lotion (?camomile). I was then given low dose antidepressants were given to aid sleep during pain. The nerve sensitivity lessened, and is now generally tolerable when it gets irritated.

My jaw involvement flared up on one occasion where I was frequently yawning from tiredness. The first time it took me 10 hours to fix a painful off centred jaw. Then later in the day I instinctively yawned again and ditto. It only took 1 hour that time, and the next 10minutes. My jaw was obviously very tender and now was giving me sharp stabbing nerve pain intermittently. The dentist took several x-rays and revealed my wisdom teeth were stuck behind my back teeth with the small roots growing in the nerves. Given my risk of infection in my current medical situation, it was preferable to wait and see if they remained stuck and to only have the surgery if absolutely necessary.

On occasion I had irritated eyes, conjunctivitis, inflammation and also. At one point approx 2003 I had a lump under the centre of one top eyelid like a cyst, placing pressure on my eye and affecting vision temporarily. That I eventually cleared up and then on other occasions I would get infected eyelash follicles, which I needed to clean with ‘J&J baby shampoo’ or medicated eye drops. My eyes get dry and annoyed easily so I try to only use the likes of clean wet ear buds or separate tissues for use around the area. Around 2004 I again noticed vision issues. I was seeing double vision 10-20m away. It was minor and I only noticed it on occasion. An optometrist said glasses were not required at the time.

I felt I wasn’t really managed well for a couple of years and sort out a new Rheumatologist despite the travel involved. I suspected I may have had infectious arthritis possible a mycoplasma infection, not purely Rheumatoid Arthritis. This was due to the fact that apart from symmetrical anthrelgia I also continued to have unsymmetrical inflammation and joint dislocations. My new Rheumatologist gathered my history and conducted further testing including baseline x-rays to check for erosion and bone density tests. There was concern as I had been on prednisone for a few years by this stage which wasn’t very good. I was interested in long-term antibiotic protocol which had some positive results in RA patients.

My new specialist understood my position, however wanted to try in addition to continuing plaquenil, the chemotheraputic drug Methotrexate in low weekly doses (followed by folic acid supplement). This reduces the inflammation response, rather than the steroid treatment which just processes the existing inflammation and can lead to osteoporosis. This was tolerated enough to wean off the corticosteroids over the next 2-3 year period, however over time the current treatment has had discomforting side effects including ulcers and digestive issues.

My overall inflammation has been better managed since this treatment regiment; however I have noted development of skin spots and increased neurological symptoms over the last 2 or so years. There could be several explanations for this, including the chemo-brain effect as it is referred to, or neuro-borreliosis or Lyme in the brain continuing to progress due to the limited drug crossover due to the blood brain barrier despite the rest of body treatment. I also noted increased vision deterioration since late 2007. On one occasion, if felt like my optic nerve was inflamed and/or spamming and all I could see was blur for over 30 minute on work day. I had been quite stressed at the time and this really scared me.

I finally ceased prednisone in late 2008, and had an especially hard year with night tremors and withdrawal symptoms increasing exponentially, and peaking 1 month after my last dose. For 1 week solid I had vivid nightmares or negative dreams, and would wake with tightly clenched hands and muscle spasms. Then it reduced to every 2nd night for a couple of weeks, then every third and decreased over several months.

Since April 2009 my eyes have been very irritable with increased light sensitivity, dryness, swelling and distance vision problems or with extended reading. I also started to have facial twitching at times. My left upper eyelid and my lower right eyelid have been twitching when I have been quite tired. It is very noticeable to me; however in the mirror it doesn’t seem so obvious. Interestingly enough, this is where I had cysts on my eyelids in the past. It seams that I could stop the left upper eyelid twitching by pressing a certain spot on my forehead. It is also interesting that I have a large 3-4mm diam red skin spot I have had for a few years on this exact location.

Photo of Acrodermatitis Chronica Atrophicans from:
http://www.aerztlichepraxis.de/rw_4_Fortbildung_Themen2007_Thema4_Borreliose.htm

My Lyme Symptoms - Stage II (Feb 01 – Dec 01)

2009-06-18T09:45:00.000-07:00

About a year I had noticed increasingly achy joints. Started in my toes, then hands, wrists, then one day I couldn’t squat anymore. I had yelped out in pain at work because my knee hurt so much. I tried joint supplements MSM and glucosamine and Omega-3 when required which helped a little. I had sunstroke around Feb 01, after getting carried away fishing and forgetting my fair skin. I had such fever/chills for a few days.

I developed a multiple little rashes on my torso, most on my left side of my chest. 10 or more red spreading squished rings that looked a little pointy. A few 3-5cms diameter others smaller versions of varying sizes. They looked like the photo seen here. Suspecting ringworm I had scrapings sent away for testing but nothing was cultured. I was sent of with a cryptic diagnosis which meant something like red round rash, and put essentially some ointment used in acne treatment as a chemical peel. It resolved after a while. Under stress my voice got pitchy like I had a cold and I had what was described as connective tissue issues. I went to a naturopath for iridology test. I was given a deep tissue and therapeutic massage to detoxify at the time.

In March 01, I became violently ill. High fevers & chills, did not want to eat, felt like dying at the time. I couldn’t keep much down; I had some herbal supplements given to me at the time, and raw garlic etc. I had never been so sick before. I lost 10 kg in a week. A week went past and I was not recovering so I managed to get myself out of bed and saw a doctor, and was told ‘I don’t know what you had, but now you have pneumonia’, and I was put on some antibiotics which resolved it at the time. For months after that, I was pale and couldn’t walk up stairs without almost passing out.

I managed to put 5/10kg back on and I got well enough to get back into life in general again, though I would get sore hands from cleaning and sore feet from standing for hours working at the time. I was having difficult concentrating on my study – it just wouldn’t sink in and I got tired easily. Sept/October 01 was a stressful time for me and during this time I also received another massage, and I was quite exhausted again.

In November 01 I became very ill again. It was much like the first time, although I was already quite slim since last time. I lost over 5kg this time within a week, and I became extremely weak. My fever was very high and I was experiencing musical hallucinations and vivid dreams. Because I couldn’t work or study, I had no income support and drove to the shop to pawn a possession to buy some vitamins, over the counter meds and basic food. I recall compelled to lie down for a while in the back of my car in the tropical sun out of necessity. I could have passed out from heat exhaustion and no one would have even known. I was so out of it I didn’t really comprehend how sick I was at the time. I went to see my boss to show her I was truly sick, and she made me go see a doctor there and then. As I had over an hour before the Dr appointment I went to see my family while in the area and let them know I was sick, and how I was a bit shock up as I almost got hit by a truck driving through a red light earlier that day. I went and saw that dodgy doc who examined me all of 10 minutes said (listening to my chest) ‘hmmm…you should really see a doctor about that’, and sent me off and told me I didn’t need anything more than I had from over the counter. I crawled back into my bed in despair.

First thing the next morning my Dad and family were on my doorstep telling me I needed to ‘come home’ to get better. After a little um and ahhing, but to buggered to fight I got into the car. I was fed grated apple, and other nutritious food that I could keep down, chicken soup etc. Because of my fever I was told not to shower or get my hair wet or I may get sicker at the time. A doctor my Step-mum housekept for, came by and took one look at me and said she was getting me admitted to hospital. At the time she told my Dad I had about 6 days left on me, though he only told me this year.

I was checked into hospital, and initial tests run and IV fluids etc. I had abnormal heart rate observed. Various basic pain meds were administered at times, and suspicious of rheumatic fever I was given a dose of IV penicillin V with oral version following. This helped a lot and my digestion system started to return to some kind of normal, and I was eating ok again and sent home with a heart ultrasound and rheumatology (RH factor 210) appointment booked for 6 weeks later. When I got home the next morning I had a severe migraine. I thought maybe I was allergic to penicillin, though I had not been as a child. I kept on the orals as it went away (I now believe that may have been a herx from the IV antibiotic given a couple of days earlier). I couldn’t string a sentence together I had to gasp for air. It was like I couldn’t get enough air.

My sister a nurse in Sydney told me to come down and she would get me checked out at the hospitals there. I saw a good doctor there who arranged a heart ultrasound the next day as it was highly concerning that had not been conducted yet, and swag of blood tests etc. My B12 level was near the floor. Injections ordered. My iron was low, FeFol to take. Rheumatoid factor (179) was very high, and my inflammation markers were high. My ANA was >2560 which is +++very high. I was kept on oral penicillin V.

Saw infectious disease clinic who were very intrigued by my seemingly unrelated symptoms. Sinovitis in hands, and arthitis, heart issues, breathing, rash. Checked for Ross river and its cousins, Sindbis IgG 0.8 (<0.9) so borderline and Sindbis IgM was POSITIVE. This was never followed up though and at the time I did not understand the blood test reports. My heart rate was 140 at rest and 160+ if I walked up a staircase. Autoimmune Mixed Connective Tissue Disease (MCTD) was suggested as a diagnosis at the time, however I was due to see my initial Rheumatologist appointment.

Lyme Disseminated Rash Image(right) from http://dermatlas.med.jhmi.edu/derm/

My Lyme Symptoms - Stage I (July 98 – Feb 01)

2009-06-13T23:35:00.000-07:00

On reflection, I presented with many indicators that suggested localised Borrelia spirochete infection in by body, however due to a lack of knowledge, the clues were never put together. Some things were classic diagnostic signs; other may have had other causes or simply part of my innate personality. Having been so young and still defining myself as an individual, I didn’t really have much of a baseline for myself or others to compare against. This is where my journey commenced with Lyme disease.

I was exhausted and had flu like symptoms, with high fever and swollen neck glands. It was assumed at the time I had glandular fever, as I was told it was known as the kissing disease and is common in teenagers. I got a lot of bed rest during this time I recall seeing an increase in frequency of floaters in my vision as it had intrigued me trying to keep them in my focus at the time (I didn’t have much better to do). It was the first time I believe I knew what a migraine was. I had headaches in the past but this was very different. I was sensitive to light also. Flashing lights annoyed me and glare made me sneeze.

I had been bitten by tiny black ticks while camping, and recall a vivid dream I experienced at the time. Within a week or so I developed a ring like rash comparable to this photograph near my shoulder blade, which spread outwards until after about a month it was a 25cm diameter bulls-eye rash as seen in my last post. I assumed it was a giant ring worm I had contracted as I had been cascading down Broadwater Creek in Townsville region on a li-low and had been completely saturated for most parts of 3 days in a Sub tropical rainforest environment. I used a lot of topical ring worm ointments, even tried apple-cider vinegar, before I possibly (uncertain and so far unable to get my records) saw a doctor and had a course of antibiotics. I refused to exacerbate it by rubbing the rash and it resolved.

I recall minor limb jerking at times occasionally jolting me awake. I noticed hair loss in my brush which I had not seen before. I had jaw pain I kept telling people it felt like I was getting my wisdom teeth, but it was dismissed as I was only 16. At times I had both a sore knee and a sore shoulder. I was active in volleyball and assumed it was an injury and I used supportive simple aids to help at the time. I had skin manifestations I would pick at, and also sores that took along time to heal. I remember having what could be described as a bladder infection and someone told me to eat cranberries. I also found I needed to eat during class and would sneak food especially sugary food to stay focused. I had a diabetes test on one occasion however it was fine at the time.

I had stabling heart pains and palpitations I recall lying in bed wondering if this was heart attack symptoms, but dismissed the idea as I was only 16. I had some numbness and tingling at times if I stayed in any position for too long. I recall experiencing what I had heard people describe as subtle ringing in the ears. I developed car sickness when I travelled especially in a closed air-conditioned car that smelt new. I recall controlling it using pressure point in the skin area between thumb and pointer finger, and by winding the window down (despite annoying some people) to deal with my sensitivity to intense smell from new car interiors. I had increasingly painful intermittent menstrual cramping. I thought maybe one of my ovaries was inflamed. I was introduced to Ibuprofen and naproxen sodium and helpful postures.

I recall depression; I was lying outside under the stars and wept for a long time. I remember being confused and telling myself I should be happy given my life at the time. I had mood swings and irritability, but one would say what teenager doesn’t. I had over reactions of emotions. I started to cry during heartfelt arguments.

I used to love maths and science. I recall being so proud at testing as a yr 11 standard during year 8. Suddenly I couldn’t concentrate like I used to, it took me along time to study and comprehend the topic, and I never got to finish exam papers in time. It’s not because I wasn’t interested, I would sit in my lunch hours with my Physics and Maths texts as I was failing, I managed to bring my grades up a level it took a lot of effort but I still failed Math C and Physics. I managed to pass Math B on my senior certificate which was required for my university entrance application.

I had a lot of stress around Aug/Sept 98 due to a change in parental custody. It was a major life adjustment and I recall losing around 3-5kg at this time, yet I was eating a lot of food, and had always had a stable body weight previously. University was exciting however hard for me as I believe I had symptoms of chronic fatigue syndrome and talked to my sister about it when I would come home from Year 12 and have to sleep. My uni text books would put me to sleep, even one lecture did. Study, sleep, eat, and work. I had moved out of home by mid 2000 with my boyfriend by this time and burning the candle at both ends (very poor diet) exhausted me until my body’s immune system crashed early 2001.

Lyme rash photo (left): http://www.biology.arizona.edu/immunology/cs/cs_2/01ac.html

Lyme Snapshot Revelation

2009-06-07T21:23:00.000-07:00

I stumbled across this snapshot of a tick bite rash one recent 3am sleepless night while ‘googling’. I identified it to be a carbon copy of a large bulls-eye rash I had just over decade ago (after a 9 day survival camp in the Townsville region with tick bite exposure) as an "Erythema chronicum migrans". This I have now learned is often diagnostic of Lyme disease. Although many cases present without a rash, my initial observation was a 5-7cm diameter 1cm thick red ring near my left shoulder blade which expanded to around 25cms diameter 5-8cm thick ring with a large red centre within about a month of observation. All of my complex medical history seems to fit this, and I am researching my options and documenting my experiences to bring awareness of Lyme in Australia and to bring light to an often misdiagnosed multi-symptom systemic disease and possible undetected epidemic.

I am a 27 yr old female from Australia who has never travelled overseas. I have been diagnosed and treated for Mixed Connective Tissue Disease (MCTD) for the last 8 years a type of auto-immunity where the body’s immune system attacks itself. My current treatment for MCTD is Methotrexate and Calcium Folinate weekly and Plaquenil daily. Over the last few years I have been medically managed to the point I have sustained part-time employment in my highly time flexible role. Past treatments have included a hit of antibiotic IV Penicillin V initially which stabilised me during my 3 day hospital vacation. The day or so of IV was followed by a few months of oral Penicillin V and then prednisone & plaquenil regiment after diagnosis of. Also some other intermittent medications were taken along the way. Neurological symptoms (Memory, Nerve Twitches, Concentration, comprehension, language loss, tight voice, Mood swings/Irritability) presented have been getting more noticeable to the point I think I should have some tests of some kind. On reflection I have been partially unaware but also in denial and of these symptoms from my illness commencement.

I have just returned home to regional Queensland after medical travel to Brisbane and the Sunshine Coast to introduce myself to a new Family Practitioner who I consider to be a Lyme Literate Medical Doctor (LLMD), review with my Rheumatologist and to advise of my recent findings, and attend an autoimmune clinic to have comprehensive testing and monitoring. My LLMD had some initial serology taken to investigate Lyme and other tick infections, although informed me that some co-infection testing I had researched was not available in Australia, and alluded to the fact if I am a “Lymmie”, I may be better tested/Treated overseas. I am awaiting test results before possible skin lesion / lung biopsies and further testing.

Recently reviewing some of my medical records, I noted the numerous dismissive references along the lines of 'she thinks she has parasites, been camping and had rash - refer to talk to a psychologist' by various Doctors on those occasions. I recall being asked if I had ever travelled overseas...and I believe many test were not conducted due to my naive 'no' response. The infectious disease unit I was visiting interstate told me I had something but they didn't know what. Then later I was just told I was auto immune, and to just learn to live with it. All I could do was to follow treatment instructions to reduce my inflammation or face acute and permanent damage. My immune-suppressing treatment regime particularly corticosteroid may just be to my detriment now, having learned my complicated range of symptoms fit within the Lyme disease portfolio.

I just cannot believe 'Lyme' was never even mentioned as a possibility with the numerous Doctors and specialists I have seen over the years. A public education campaign on Lyme disease in Australia is severely overdue, and I would like to see the documentary "Under Our Skin" shown in all schools, especially as a risk mitigation strategy to ones that provide outdoor / wilderness experiences like the leadership development camp I attended when I was 16 years old and didn’t know any better because I was green to Lyme in Australia.