Master References List

The following annotated list of references provides supporting evidence for statements contained with in the information pack. It should be noted that this list is not exhaustive and will be updated on a regular basis to ensure currency and reliability of the information. Should clarification or assistance be required, email the LDAA.

What is Lyme disease?
Why is Lyme disease controversial?
What is Lyme disease?
  • The Lyme Disease Association of Australia's Lyme Disease: Patient Experience Report (2012), table 2, page 12 reports tick bite as most common form of bite.
  • A full overview about ticks on the Lyme Disease Association of Australia website.
  • A full description of co-infections on the the Lyme Disease Association of Australia website.
  • Video: What is Lyme Disease? Easy to watch for people who have difficulty reading.
Symptoms

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Prevalence
  • Lyme is outstripping breast cancer and AIDS as the fastest growing infectious disease in some countries, including America.  It is one and a half times higher than the number of women diagnosed with breast cancer each year in the USA (approximately 200,000) and six times higher than the number diagnosed with HIV/AIDS each year in the USA (50,000).
  • In 2013 the US Centre for Disease Control reviewed its annual figures of new cases from 30,000 to 300,000.
  • The first Australian-acquired case of Lyme disease was reported in New South Wales in 1982 in Stewart A, Glass J, Patel A, Watt G, Cripps A & Clancy R. 1982, Lyme arthritis in the Hunter Valley, Med J Aust. Feb 6;1(3):139.
  • Lyme disease is not defined as notifiable disease in Australia. Commonwealth Department of Health, 2014. Australian national notifiable diseases and case definitions.
  • The Lyme Disease Association of Australia's Australian Patient Report (2012) identified that patients are not tested properly and often diagnosed with other conditions, page 19 lists other diagnoses of respondents.Borrelia has been found on every continent, except Antarctica.
  • Borrelia can be spread via ticks carried by migrating sea birds, particularly I. Uriae (seabird) and I. auritulus (bird).
  • The Lyme Disease Association of Australia's Australian Patient Report (2012) includes a distribution map identifying 'geographic locations when bitten', figure 3, page 13.Note, there were no survey respondents from Australian
  • Capital Territory or South Australia in 2012, however the Lyme Disease Association of Australia has been in contact with patients in these locations.
Transmission
  • While tick bite is known to be the most common form of transmission, there are numerous under-researched alternate possible means of transmission. Alternate forms of transmission were discussed in the Lyme Disease Association of Australia response to the Commonwealth Department of Health Scoping Study on Lyme Disease, pp. 16-19, 23, 40-41. The Lyme Disease Association of Australia's Australian Patient Report (2012) identified that tick bite is not the only means of transmission with 39% of patients offering alternate explanations for their acquisition of Lyme disease.
  • Ranging from congenital and possible sexual transmission, to bites from arthropods other than ticks, and contact with infected mammals, table 2 and 4, pages 12 and 14.
  • Scientific studies support potential alternate modes of transmission; however these potential transmission sources have not been fully researched. A small selection of research is offered as an extension to these references.
Diagnosis
  • Lyme disease is primarily a clinical diagnosis. Blood tests should not be the defining mechanism used to rule out Lyme disease as a diagnosis.
    • In a presentation from IGeneX laboratory to ILADS doctors: “Lyme disease is a clinical diagnosis. This means that the physician makes the diagnosis using your clinical history and symptoms. If a physician observes an EM rash, a diagnosis of Lyme disease will be made. If a rash is not seen by a physician, laboratory tests are often needed to help with the diagnosis."
    • The Lyme Disease Association of Australia's Australian Patient Report (2012), table 9, page 20 illustrates that most diagnoses included clinical evaluation.
    • The New South Wales Department of Health acknowledges clinical diagnosis takes precedence over pathology.
  • There are significant limitations in using laboratory tests that rely on a patient’s immune system to mount an appropriate defence. Not all patients produce antibodies to Lyme disease and ‘seroconvert’ from an IgM status to an IgG status. New research highlights that this is a significant limitation of the heavy reliance on serology alone in diagnosis Lyme disease.

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Testing
  • The most reliable testing is currently conducted through overseas laboratories or Australian Biologics. The LDAA’s response to the Commonwealth Department of Health Scoping Study on Lyme disease mentions, p. 34:“This report provides some insight into the laboratories that Australian patients have used to conduct their Lyme disease testing (LDAA Australian patient report 2012, p. 25). The table reports the laboratory and the test result; either positive or negative. From the results, it is clearly evident that Australian tests conducted by the two NATA accredited laboratories in Australia return significantly fewer positive results than those performed in other private laboratories that are overseas and in Australia.”
  • The LDAA’s response to the Commonwealth Department of Health Scoping Study on Lyme Disease also discusses the inadequacies of Australian testing processes as they pertain to Lyme disease, pages 23-31.
  • There is significant diagnostic uncertainty relating to laboratory testing processes in Australia. In a recent media statement, the Department of Health acknowledged “laboratory tests are used to see if patients are showing an immune response to the bacteria that could cause this infection. There are different approaches used by different laboratories in this process which leads to different diagnoses for the same patients. We are working to see if these approaches can be harmonised.
  • The LDAA has called upon the Government to resolve the testing uncertainty as an immediate priority (see Patient Focused Strategic Plan).
Treatment
  • If you require further information regarding treatment options and finding a Lyme-literate Doctor, please contact us.
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    Why is Lyme disease controversial?

    This section outlines some of the controversies associated with Lyme disease in Australia and overseas.

    Within Australia

    "There is no evidence of Lyme disease in Australia"

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    "Only Australian pathology tests are valid and overseas testing is unreliable"

    The medical community's position of Lyme disease is supported by Australian pathology laboratories with inadequate testing processes, where interpretations are biased toward producing negative results. Refer to the LDAA's formal response to the DoH Scoping Study Report (pages 15-31) for further explanation.

    Note: The LDAA’s Scoping Study Response is, by necessity, cumbersome and difficult to read because it was required to follow the sequential order initiated by the author of the original DoH Scoping Study Report. Attempts are being made to provide a more user-friendly, plain English summary of the document; however, this is unavailable at this time so we refer you to the full document with page references in the interim.

    Please be aware that these resource materials are prepared by volunteers who are themselves suffering from Lyme disease and often afflicted by ill health. Despite this, the documents and references provided demonstrate that Lyme patients have been successful in unearthing numerous references that have been overlooked or purposefully omitted by Australian ‘experts’ in their the simplistic presentation of the entrenched positions currently being promulgated to the Australian medical community and public.

    The LDAA has raised a number of concerns regarding Australian testing processes including:

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    International Lyme Controversies
    "There's no Chronic Lyme disease and extended treatment with antibiotics is not justified" (Underdevelopment)
    What are the Recent Developments in Australian Lyme Politics?
     

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