Media and Public Information Pack

WHAT IS LYME DISEASE?

  • Lyme disease is an infectious illness caused by the bacterium known as Borrelia, which creates a condition more correctly known as Borreliosis or Lyme Borreliosis;
  • The name ‘Lyme disease’ was coined in the USA when an outbreak of juvenile arthritis occurred in the town of Lyme, Connecticut, and this was subsequently found to be caused by the Borrelia bacteria;
  • In the context of this document, ‘Lyme disease’ is used interchangeably with the term ‘Lyme-like illness’. Some people become seriously ill after the bite of a tick and their symptoms closely resemble that of the internationally defined Lyme disease.  Until such time as the Federal Government either acknowledge the name Lyme disease, or indeed have the will to change the name, we will continue to be the Lyme Disease Association of Australia and will continue using the term Lyme disease or Lyme-like illness;
  • Recent research undertaken by Murdoch University has identified novel Borrelia bacteria and other pathogens associated with the co-infections in Australian ticks;
  • Borrelia is a spirochete form of bacteria that is usually transmitted to humans through the bite of an infected vector (commonly a tick);
  • People with Lyme disease almost always have concurrent pathogens as a contributing cause to their illness. They are commonly known as co-infections and include vector-borne bacteria and parasites such as Babesia, Bartonella, Rickettsia, Mycoplasma, and Ehrlichia.

SYMPTOMS

  • Lyme disease manifests as a multi-systemic illness, which can result in symptoms affecting random parts of the body including (but not limited to) muscles and joints, organs, brain, gastro-intestinal track, and neurological systems;
  • Lyme disease is frequently called ‘the great imitator’ because it can mimic many other diseases such as Multiple Sclerosis, Parkinson’s disease, Motor Neurone disease, Chronic Fatigue Syndrome, Fibromyalgia, Guillain-Barre Syndrome, Juvenile Rheumatoid Arthritis, Autism, Lupus, and Alzheimer's disease;
  • The occurrence of a bull’s eye rash is one diagnostic criterion for Lyme disease, but this occurs in less than 35% of cases;
  • Lyme disease is typically categorised into early (acute) and late (chronic) stage disease. Most diagnosed cases in Australia have progressed to the late stage because there are no early intervention strategies in place to ensure appropriate treatment following tick bites;
  • Symptoms in early stage Lyme (close to the time of the bite) include flu-like symptoms, headaches, fever, swollen lymph nodes, fatigue, muscle aches and joint pain;
  • Symptoms in late stage Lyme disease (extending to many months, or even years, following tick bite) include multi-systemic illness together with problems such as gastro-intestinal, neurological, balance, chronic fatigue, random muscle and joint pain. Late stage Lyme can be mild, moderate, or severe and, if left untreated, can cause severe disability or become fatal;
  • Information on ticks, co-infections, myths, and Frequently Asked Questions is available on our Website.

PREVALENCE

Back to top

TRANSMISSION

  • Lyme disease and its common co-infections are likely to be transmitted in multiple ways. Most commonly Lyme disease is spread via tick bite.
  • Other suspected modes of transmission include:

- Other blood-sucking insects, mosquitoes, flies, fleas, and mites;

- Placental transfer (from mother to unborn baby) and through breast milk;

- Contact with urine and other bodily fluids from infected animals;

- Blood transfusions (blood banks do not screen donated blood for these pathogens); and

- Sexual transmission;

Further research is required to confirm the growing body of anecdotal evidence and preliminary research, which suggests these alternate modes of transmission are possible.

DIAGNOSIS

The LDAA Australia strongly asserts:

  •  Lyme disease is a clinical diagnosis, based on a patient’s history, symptoms, and current presentation;
  • Blood tests can be used to support a Lyme disease diagnosis; however, they may not be entirely reliable. Blood tests should not be the defining mechanism used to rule out Lyme disease;
  • If a patient presents with Lyme-like symptoms or suspects they may have Lyme disease, then Lyme disease and its associated co-infections should be properly investigated and ruled out before reaching a conclusive diagnosis;
  • Australian testing facilities are currently not adequately equipped to test for all the Borrelia species that can cause Lyme-like illness. The most reliable testing is currently conducted through the IGeneX lab in the United States and Infectolab in Germany;
  • The LDAA’s concerns about current Australian testing processes are detailed on pages 23-31 of the Association’s formal response to the Scoping Study commissioned by the Chief Medical Officer;
  • This link provides further information on diagnosis and testing.

TREATMENT

The LDAA strongly asserts:

  • Given the complicated nature of Lyme disease and its associated co-infections, patients who suspect they have Lyme disease need to consult with a doctor experienced in diagnosing and treating Lyme disease (commonly referred to as Lyme-literate).
  • An experienced Lyme practitioner is better able to identify the type/s of infection a person has, help them decide if testing is required and can best guide treatments based on clinical presentation;
  • The US Centers for Disease Control and Prevention (CDC) states “People treated with appropriate antibiotics in the early stages of Lyme disease usually recover rapidly and completely”.
  • This link provides further information on treatment options in Australia.

Back to top

HEALTH COSTS

  • Lyme disease costs the Australian economy tens of millions of dollars, through misdiagnosis and inappropriate treatment regimens;
  • The Australian Government Institute of Health and Welfare states Chronic diseases are long lasting conditions with persistent effects. Their social and economic consequences can impact on peoples’ quality of life.  Chronic diseases are becoming increasingly common and are a priority for action in the health sector.  Lyme disease does not form part of their statistics for chronic conditions, leading the LDAA to believe the figures quoted by the Institute could be even higher.  The Senate Enquiry states “the Australian Government through the Department of Health remains open-minded about the cause of the various complexes which manifest as constellations of chronic debilitating symptoms”;
  •  Almost 50% of Australian Lyme patients report having to quit their jobs;
  • The existence of Lyme disease in Australian is currently being denied by State, Territory, and Federal Governments therefore Centrelink benefits cannot be claimed for Lyme disease patients.

WHAT DO WE WANT AND WHEN DO WE WANT IT!

  • Recognition that Lyme disease/Borreliosis exists in Australia and if untreated can lead to serious health problems, disability, and can be fatal;
  • Funding for research into the transmission, testing, and treatment of tick-borne diseases;
  • Education of the healthcare sector regarding the accurate diagnosis and effective treatment of Lyme and other tick-borne infections together with trained evaluation and preventative treatment after a tick bite; and for all Australians for the prevention of Lyme disease in Australia;
  • Awareness for the transmission of tick-borne pathogens - especially via blood transfusion, sexual transmission, and during pregnancy.

The LDAA acknowledges that the Australian Government, in its Senate Community Affairs References Committee final report on the Senate Enquiry:

has taken an interest in, and is concerned for, Australian patients who are sharing their stories about suffering with debilitating symptom complexes attributed to ticks.” 

It is unfortunate that the slow pace of outcomes emanating from this response is so slow. The Lyme community demands action now.

A Strategic Plan was submitted to the Chief Medical Officer on recommended strategies for addressing Lyme disease as part of the LDAA’s response to the Scoping Study on Lyme disease. Refer pages 42-55.

According to Rev Nikki Coleman, LDAA’s representative on the Clinical Advisory Committee on Lyme Disease (CACLD):

“Lyme disease is in Australia and the risks from undiagnosed and untreated Lyme disease can be life threatening.  Cases are being reported in ALL states and territories in Australia and the rate of infection seems to be rapidly increasing.  Most Australian Lyme disease patients face huge financial burdens because of the debilitating nature of Lyme disease and because of inadequate testing and treatment options available here.

Former Australian Senator John Madigan, a member of the Senate Enquiry stated in Senate Hansard:

We have had three recent Nobel Prizes in medicine, we have the medical technology to rank No. 1, we have the economic strength to do it, and our surgeons are respected throughout the world. So, what is holding us back? ; and

 “… Sydney doctor Richard Schloeffel compared Lyme in Australia today to the early instances of AIDS in this country. Lyme is unrecognised, it is spreading quickly, and the medical profession is behind the eight ball, Dr Schloeffel told us. Mainly because of bodies like the Australian Medical Board and the Australian Health Practitioner Regulation Agency, we are not even chasing the Lyme target. Despite their denials, these two organisations are identifying doctors who are treating Lyme and making conditions so difficult for them that many are being forced to give up their practice.

Sharon Whiteman, Chief Executive Officer of the LDAA, believes:

As previously noted, due to Lyme disease not being recognised in Australia, we acknowledge research from USA CDC which states approximately 1% of the population are diagnosed with Lyme disease each year (2013). This figure is 1½ times higher than the number of women diagnosed with breast cancer each year in the USA (approximately 200,000), and 6 times higher than the number diagnosed with HIV/AIDS each year in the USA (50,000)”; and

 “Healthcare professionals in Australia have not been trained to look for Lyme disease with countless patients left undiagnosed and thousands more misdiagnosed".

Back to top

WHAT IS THE LYME CONTROVERSY?

This question forms the basis of the current issues surrounding Lyme disease in Australia. The LDAA is working to gain complete and accurate exploration into this question and strongly asserts:

  • The existence of Lyme disease bacteria in Australian ticks is currently being denied by the States, Territories, and Federal Government;
  • There are no official statistics on the number of Lyme cases in Australia despite the first documented case in the Newcastle region of NSW in 1982;
  • The denial of the existence of Lyme disease in Australia is largely due to the flawed study by Russell and Doggett in 1994:
  • Suburban areas are not immune to ticks carrying the bacteria that can cause Lyme Disease;
  • Lyme disease IS in Australia. Infections have been reported and acquired in all states and territories of Australia.  Research has found that Australian Ticks DO carry the Borrelia bacteria yet the research has been ignored.

CASES AND CONCERNS ARE GROWING

As awareness about Lyme and Lyme-like illness grows, the small numbers of doctors willing to treat the illness are being swamped with inquiries from prospective patients:

  • The Australian Chronic Infectious and Inflammatory Disease Society (ACIIDS) have already treated over 4,000 patients with Lyme-like illness. (Submission 370, p2); Many stories from Lyme sufferers can also be found in the Submissions received by the Committee;
  • At the Senate Enquiry, Dr Richard Schloeffel, an ACIIDS doctor, has reported a waiting list of approximately 800 patients;
  • Demand for advice and assistance through the LDAA increases year on year.

A DIRECTIVE FROM THE CHIEF MEDICAL OFFICER

In August 2013, the Chief Medical Officer, Prof Chris Baggoley, published a Directive of Advice to Clinicians arising out of the Clinical Advisory Committee on Lyme disease.

RESEARCH THAT SAYS LYME DISEASE DOES EXIST IN AUSTRALIA

There is a great deal of research available on Lyme disease in Australia and around the world and the LDAA continuously keeps up to date on information.  The following is a small selection:

Back to top

OUR MISSION AND AIMS

The LDAA is a small yet powerful registered charity and Australia’s peak patient body. We are committed to achieving multi-sector recognition and world’s best practise diagnosis and treatment for Australian Lyme and associated disease patients in Australia. The Association undertakes activities in six key areas: information, support, advocacy, education, awareness, and research.  The aims of the LDAA are to:

  • Advocate for individuals and families living with Australian Lyme and associated diseases with governments, doctors and local communities;
  • Facilitate world’s best practise patient care and support;
  • Represent the perspective, lived experience, and interests of the Australian patient community;
  • Act as a conduit between international developments, research, treatments, and other Lyme communities;
  • Fundraise to facilitate improvements for people living with Australian Lyme and associated diseases by supporting the education of doctors and other health professionals and to support research and innovation in epidemiology, diagnosis and treatment of Australian Lyme and associated diseases; and
  • Educate the public and medical sector about the risks of Lyme disease and the need for early diagnosis and treatment (early detection makes this an easily treatable disease).

PROJECTS UNDERTAKEN

The LDAA undertakes many projects throughout the year.  Some of these projects are:

  •  LDAA annual May Lyme Project;
  • 2013 Postcard Campaign (instrumental in the Government holding the Senate Enquiry);
  • Research funding;
  • The Senate Enquiry (submissions and attendance);
  • CACLD (submissions and attendance);
  • Raffles.

OUR PATRON

We are extremely honoured to have Dr Richard Horowitz, MD as our Patron at the Lyme Disease Association of Australia (LDAA).

Dr Richard Horowitz is a board-certified internist and the medical director of the Hudson Valley Healing Arts Centre, an integrative medical centre, which combines both classical and complementary approaches in the treatment of Lyme Disease and other tick-borne disorders. He has treated over 13,000 Chronic Lyme disease patients in the last 30 years, with patients coming from all over the US, Canada, and Europe to his clinic. He is former Assistant Director of Medicine of Vassar Brothers Hospital in Poughkeepsie, NY, and is one of the founding members and past president elect of the International Lyme and Associated Diseases Society (ILADS). He is also past president of the the International Lyme and Associated Diseases Educational Foundation (ILADEF), a non-profit organization dedicated to the education of health care professionals on tick-borne diseases. He co-authored peer-reviewed Lyme guidelines and has trained over 100 healthcare providers in diagnosing and caring for patients with treatment-resistant tick-borne disorders. He was previously awarded the Humanitarian of the Year award by the Turn the Corner Foundation for his treatment of Lyme disease, and has dedicated his life to helping those stricken with this devastating illness.

He is also the author of two best-selling books on Lyme disease, Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease (2013, NY Times Best Seller), and How Can I Get Better? An Action Plan for Treating Resistant Lyme and Chronic Disease (2017, national bestseller). These books incorporate recent scientific advances and explain in detail how healthcare providers can effectively diagnose and treat resistant illness.

Finally, he is a member of the World Health Organization’s Ad Hoc Committee for Health Equity, which engages in work to help improve Lyme diagnostics and treatment, having served as a consultant to governmental agencies around the world, including those in China, Australia, Belgium, France, the United Kingdom, and the United States. Dr Horowitz was recently appointed as a member of the HHS Tick-borne Disease Working Group, which was formed by the passage of the 21st Century Cures Act. He is now working as both a member and co-chair of the ‘Other Tick-borne Diseases and Co-infections’ subcommittee to help our country improve the care of those suffering with tick-borne disorders.

Dr Horowitz also gave evidence at the November 2016 Australian Government Senate Inquiry into the Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients.

OUR AMBASSADOR

Tessa Wallace, who represented Australian Swimming at the World Championships, Commonwealth Games, and the Olympics, was diagnosed with Lyme disease several years ago, but despite this has performed tremendously; all whilst batting Lyme disease and doing it all with a smile.

In 2010, at only 17, Tessa won a silver medal at the Commonwealth Games in the 200 metres breaststroke, months after a knee surgery.  In 2011 she contracted Ross River Virus and saw her health decline; however, she was determined to qualify for the London 2012 Olympics.

With constant fatigue, muscle aches and lack of ability to train, she somehow fought her way through a miracle race to win the 200 metres breaststroke to qualify for the Olympic Team, achieving her lifelong dream.

Her health however was not improving, and it was later that year she was finally diagnosed with Lyme disease and co-infections. In 2013 after six months of treatment she managed to slowly climb her way back up to the top of the swimming ladder.  Tessa qualified for the 2014 Glasgow Commonwealth Games and competed in other events to put her in the top three swimmers on the world rankings.

In the lead up to the 2016 Olympic selections Tessa’s symptoms flared – the aches, pain and fatigue made preparations difficult - and she just missed a Rio selection. Tessa now sees this as a blessing in disguise to devote time to putting her health back on track and was selected for the 2018 Commonwealth Games on the Gold Coast. She has also been studying PR and journalism in the midst of this battle.

Daniel Kowalski, General Manager of the Australian Swimmers Association, maintains that she has character, toughness, tenacity and heart.  “Tessa is someone whom I have the utmost respect and admiration for and I truly believe she would be an amazing asset for the LDAA”.

The LDAA is privileged to have her as an Ambassador and we wish her every success in the future.

Back to top

SCIENTIFIC ADVISORY COMMITTEE

Local and international biomedical and clinical medicine experts have formed a Scientific Advisory Committee (SAC), in conjunction with the Lyme Disease Association of Australia (LDAA), to inform the Australian government, healthcare sector, insurers, and community at large of the need for proper treatment regimens of Lyme-like and vector-borne illnesses in Australia and compassion for Australian patients caught up in policy delays that restrict treatment options.

The SAC will help to inform the Department of Health, the National Health and Medical Research Council's priority research, and funding areas in order to steer and contribute to the national agenda into vector-borne diseases. The LDAA believes we need to make sure that the world’s best practice healthcare is available to Australians, particularly those in identified endemic areas in Australia. 

More than 4,000 Australians who have managed to get diagnosed in the Australian healthcare system for serious Lyme-like illness – most having waited for an average of 10 years before receiving an accurate diagnosis –  are struggling to obtain adequate care due to a lack of health policy around vector-borne diseases in Australia, with USA modelling statistics indicating that the current number of Australians who’ve contracted the illness, but remain undiagnosed, could be around ten thousand each year.

While each Australian state has recorded endemic areas, Sydney (particularly the Northern Beaches), Melbourne, Perth, and Brisbane along with the south-east coast are among the regions with the highest recorded rates of locally-acquired Lyme-like illness, with children, outdoor workers, day trippers and people with an outdoor lifestyle among those at highest risk .

SAC members

  • Chairman - Gilles Guillemin, Professor of Neurosciences, Department of Biomedical Sciences, Faculty of Medicine and Health Sciences, Macquarie University, Head of the Motor Neurone Disease laboratory;
  • Dr Julian A. Barden, Director of Research, Biosceptre International Ltd, Australia; 
  • Dr John Duley, expert in diseases of metabolism, and individual responses to drugs (pharmacogenetics); 
  • Dr Bernie Hudson, Head of Infectious Diseases, Royal North Shore Hospital; 
  • Dr Micheline Kergoat, Head of Biology at Metabrain Research, France; 
  • Dr Lance SandersBSc, Hons, PhD, MASM;
  • Dr Richard Schoeffel, LLMD, Pymble Grove Medical Centre and co-author on Australian recommendation of protocols for Lyme disease;
  • Dr Neil Spector, is the Sandra Coates Associate Professor of Medicine, an Associate Professor of Cancer Biology and Pharmacology and the Associate Director of Developmental Therapeutics for the Duke Cancer Institute, Duke University;  and 
  • Dr Richard Horowitz (our Patron), board certified internist and medical director of the Hudson Valley Healing Arts Centre, will be providing strategic advice to our SAC.

Professor Gilles Guillemin, Chair of the Committee, believes we are seeing an increased number of cases of vector-borne illnesses in Australia every year.  In fact, the Australian Senate Enquiry revealed that there are a significant number of people still waiting to be treated and one clinic reported another 800 people on their waiting-list.  

Tick and vector-borne diseases are on the radar for many scientists, given the systemic role they play in infection of tissue, blood, and organs, and their potential impact in neurodegenerative diseases.

The Priority of the SAC

The first priority of the SAC will be to build a cohort of cross and multi-disciplinary teams and establish a world class, innovative, national plan for the treatment of patients with, and stemming the spread of, Lyme-like illness in Australia. Making tick borne disease a notifiable disease in the Australian healthcare system will help to build the risk profile of tick bites and allow the national impact of such diseases to be better understood.

The issue, experts say, is that due to a global epidemic a greater number of Australians are now being diagnosed with Lyme-like illness, meaning healthcare policies need to reflect the situation as it    stands and prioritise treatment of this emerging illness. In addition, research needs to be done in order to understand why increasing numbers of Australians are becoming ill, many after tick bites.

The lack of available treatments for those who have Lyme-like illness in Australia is due to a legacy issue where healthcare policies have refused to recognise the disease given a lack of available evidence indicating that the same infection pathway that exists in the US also exists in Australia. This has left many of those who seek treatment without recourse. A survey conducted by the LDAA among those with Lyme-like symptoms found that many waited an average of 10 years before receiving an accurate diagnosis, leaving them with an advanced and chronic disease scenario. 

Australia is not alone in its fight against Lyme-like illness, with increasing evidence indicating that multiple alternative strains of bacteria worldwide, in addition to the well-characterised Borrelia burgdorferi that causes Lyme Disease in the US, could also be causing Lyme-like illness. 

Dr Richard Horowitz, member of the US Congress-established Health and Human Services Tick-Borne Disease Working Group, also believes this is a world-wide epidemic and is causing major disability for millions of people and future generations will also be affected.

OUR BOARD AND VOLUNTEERS

The LDAA Board (currently all female) consists of a number of people who are passionate in their endeavours and contribute in varying ways to ensure the Mission of the LDAA is progressing.

Without our valued volunteers we could not do what we do.  Some of our Board Members and Volunteers have had Lyme and are recovered, some currently are suffering and are unable to work, some have children with Lyme and some have whole families with the illness.

OUR PRESIDENT MARIE HUTTLEY-JACKSON

Our current President, elected in November 2017, works in a policy role in government in industry innovation, and recently completed a masters degree in marketing.

Driven by generosity and compassion, Marie has been volunteering her skills to small charities for over 20 years. The LDAA welcomes the experience she’s gained through numerous leadership roles and her insight from working for a large health charity in the areas of media, marketing and engagement.

Marie first joined the LDAA in 2014 as the mother of a child with Lyme-like illness. She credits the LDAA with helping her family through this difficult time and is looking forward to providing others with that same support. After appropriate treatment, Marie’s daughter is now in remission.

SHARON WHITEMAN, CEO

Sharon has worked in the field of health and wellness for almost 40 years. She was an Intensive Care Unit nurse for 20 years and has run a business focussing on nutrition for a further 18 years.

Sharon has been involved with the LDAA since its inception in 2009 and fulfilled the role of President from 2013-2017.

She has 25 years’ experience leading teams of volunteers from all walks of life, who have appreciated her calm manner, commitment to staff development, and an engaging style. Despite being a recovering patient herself, Sharon has been a tireless campaigner of justice for patients of Lyme disease and Lyme-like illness. Sharon is an endless source of inspiration for her team.

A PDF printable version of this document is available here.

Back to top