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?
- Why is Lyme disease controversial?
- Within Australia
- International Lyme Controversies
- What are the Recent Developments in Australian Lyme Politics?
- What are the impacts of denying Lyme disease in Australia?
- What do Lyme patients want?
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.
- The LDAA's Australian Patient Report (2012) identified:
- Common symptoms of Australian Lyme disease patients, table 5, page 16.
- Less than 35% of cases reported a bull's eye rash (Erythema Migrans).
- The Lyme Disease Association of Australia's response to the Commonwealth Department of Health Scoping Study (page 20) references (page 17) of the Australian Patient Report (2012) which states 31% of respondents reported an Erythema Migran rash, and 40% reported a red circular rash.
- Most diagnosed cases in Australia have progressed to the late stage. Table 10, page 20 documents length of time from bite to diagnosis. However, it should be noted that an assumption has been made that the patient had active Lyme disease throughout this period, i.e. that it had not been dormant for a longer period.
- A full overview of early-stage Lyme disease symptoms.The Lyme Disease Association of Australia's Australian Patient Report (2012) identified, page 16, that 84% respondents had flu-like symptoms at onset.
- The Lyme Disease Association of Australia's response to the Commonwealth Department of Health Scoping Study (pages 23-24) provides further detail about late-stage Lyme disease and calls for a common definition.
- Lyme disease is potentially fatal.
- For further information see the Lyme Disease Association of Australia's Myths about Lyme disease and Frequently Asked Questions.
- 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.
- 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.
- 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.
- 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).
- Patients should be treated according to one, or a combination of, the following treatment guidelines:
- New standard of Care Guidelines for Treating Lyme and Other Tick-Borne Illnesses Released by International Lyme and Associated Diseases Society.
- Deutsche Borreliose-Gesellschaft e. V. Diagnosis and Treatment of Lyme borreliosis
Why is Lyme disease controversial?
This section outlines some of the controversies associated with Lyme disease in Australia and overseas.
- Despite rapidly growing numbers of Australians being diagnosed with Lyme, the prevailing viewpoint within the Australian medical community is that "there is no evidence of Lyme disease in Australia."
- Statements made supporting this position:
- Quote from NSW Health Department advisory notice, which has historically defined the position of other state health departments: "Although locally-acquired Lyme borreliosis cannot be ruled out, there is little evidence that it occurs in Australia."
- NSW Health Department Fact Sheet on Lyme disease.
- Chief Medical Officer's Advice to Clinicians.
- Royal College of Pathologists (RCPA) Position Statement on Lyme disease.
- Royal College of Pathologists (RCPA) e-Pathway newsletter and media statements.
- Australian Medical Association website (April 15, 2014).
- There are no official statistics on the number of Lyme cases in Australia because Lyme disease is not a notifiable disease, 'Australian national notifiable diseases and case definitions'.
- The 1994 government-funded tick research study that continues to define the medical community's position on Lyme disease:
- Russell RC, Doggett SL, Munro R, Ellis J, Avery D, Hunt C & Dickeson D. 1994, Lyme disease: a search for a causative agent in ticks in south-eastern Australia. Epidemiol Infect, 112:375-384.
- The LDAA challenges the 'no evidence of Lyme' position on the following basis:
- Other research has found evidence: Australian ticks do carry the Borrelia bacteria.
- There are numerous strains of Borrelia known to infect humans, other than the common American strain (Borrelia burgdorferi) sought in the Russell and Doggett study.
- For coverage of the issues relating to the testing processes used in the Russell and Doggett 1994 study, please refer to the LDAA formal response to the DoH Scoping Study Report (page 25).
- Also: Smith, K. 2014, Lyme Disease: A Counter Argument to the Australian Government's Denial ISBN: 978-0-9923925-6-7
- Testing relied on now-outdated processes. Refer LDAA formal response to the DoH Scoping Study Report (page 25-31) for further understanding of advances in testing processes since 1994.
- It is possible a unique Australian strain of Borrelia (or similar pathogen) capable of causing Lyme-like illness exists in Australia. A proponent of this viewpoint was none other than Prof. Richard Russell, lead author on the 1994 tick study, when he wrote in the Journal of Vector Ecology (1994):
- Russell, RC. 1998, Vectors vs. Humans in Australia - Who is on Top Down Under? (An Update on Vector-Borne Disease and Research on Vectors in Australia). Journal of Vector Ecology 23(1): 1-46.
- Brazilian researchers have found evidence of a pathogen causing Lyme-like illness that they have named Baggio-Yoshinari Syndrome because it is characteristics that distinguish it from Borrelia burgdorferi. Please refer to:
- Yoshinari NH, Mantovani E, Bonoldi VL, Marangoni RG & Gauditano G. 2010, Brazilian lyme-like disease or Baggio-Yoshinari syndrome: exotic and emerging Brazilian tick-borne zoonosis, Rev Assoc Med Bras, 56(3): 363-369.
- Shinjo SK, Gauditano G, Marchiori PE, Bonoldi VLN, da Costa IP, Mantovani E & Yoshinari NH. 2009, Neurological manifestations in Baggio-Yoshinari (Brazilian Lyme disease-like syndrome). Bras J Rheumatol , 49 (5), 492-505.
- The Russell and Doggett study did not consider vectors other than ticks (such as flies, mites, fleas and mosquitoes).
- Since the Russell and Doggett (1994) study, six more pathogenic Borrelia genospecies have been discovered. See EziBioCloud Genome Database.
"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:
- Manufacturers of commonly used test kits note that negative results (either first or second-tier) should not be used to exclude Lyme disease. Refer to the LDAA's formal response to the DoH Scoping Study Report (page 31).
- Despite this, only patients receiving a positive result on the ELSIA (first tier) test will have their blood tested using more Borrelia-specific immunoassay test (Western Blot) by one of two Australian laboratories: Westmead or PaLMS.
- There is no external Quality Assurance Process (QAP) for these labs (Royal College of Pathologists, Position Statement on Lyme disease, p. 5).
- Westmead laboratory tests for the North American strain plus one European strain of Borrelia, using a non-standard ‘in house’ immunoblot test method. In interpreting test results, a test is positive if it shows at least five out of ten positive ‘bands’ (based on criteria set by the US Centre for Disease Control (CDC).
- The CDC recommends a five out of 10 band criterion only for assessing surveillance of notifiable diseases within the United States of America. The CDC states that the guidelines should not be used for the purposes of patient diagnosis.
- Westmead laboratory concedes that approximately 900 Australian patients would have received a positive test result for Lyme disease had the laboratory used the same testing methods and assessment criteria as PaLMS and other overseas labs.
- Refer to the LDAA's formal response to the DoH Scoping Study Report (page 29) “Through application of the European guidelines, whereby two or three bands denote a positive (depending on which bands are shown), it would be evident that up to eight times more patients would have tested positive on the Westmead immunoblot. Drawing from the Westmead data, between 1994 and 2012, the LDAA calculated that this would represent between 300 and 690 patients who may have tested positive by applying the more relevant European guidelines. In a 2012 paper, Westmead acknowledges that over 900 samples might have been classified positive, but quote 71 (or 4% of total specimens) are reported as positive...”
- A reference was made to the extract Lyme Borreliosis: a diagnostic controversy? in a presentation by David Dickeson at a symposium held to mark the retirement of Prof. Richard Russell entitled Medical Entomology in Australia: Past, Present and Future Concerns (subtitled) A Festschrift to Honour the Career of Prof. Richard C. Russell, held at Westmead Hospital, 29 June 2012 (Pages 18-19), but has since been removed.
- While acknowledging that Australia has a ‘small pond’ of experts in the area of bacterial research, the LDAA has echoed patients’ expressed concerns regarding the potential for conflicts of interest when senior members of the Westmead staff are cited as co-authors of the 1994 Russell and Doggett tick study.
- The LDAA raised concerns with the Chief Medical Officer of Australia regarding the potential for conflicts of interests in relation to the Department of Health’s Clinical Advisory Committee on Lyme Disease (CACLD) in its submission of comment on the CACLD’s draft Terms of Reference (Page 4). As at 7 May 2014, the LDAA is unaware of any conflicts of interest having been declared by members of the CACLD and associated sub-committees contributing expertise to the review process.
- Co-authors of 1994 tick study on staff at Westmead Hospital, Russell RC, Doggett SL, Munro R, Ellis J, Avery D, Hunt C & Dickeson D. 1994, Lyme disease: a search for a causative agent in ticks in south-eastern Australia. Epidemiol Infect, 112:375-384.
- An example of the unsubstantiated criticism of overseas laboratories is evident in the Royal College of Pathologists of Australasia’s (RCPA) ‘Position Statement’ on Diagnostic Laboratory testing for Borreliosis (‘Lyme Disease’ or similar syndromes) in Australia and New Zealand.
- The LDAA has published a formal and detailed response to the RCPA Position Statement: Lyme disease pathology: Counter argument to the Royal College of Pathologists Australasia Position Statement on Diagnostic Laboratory Testing for Borreliosis (‘Lyme disease’ or similar syndromes) in Australia and New Zealand. LDAA, April 2014.
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?
- Department of Health, Clinical Advisory Committee on Lyme Disease (CACLD).
- Chief Medical Officer's formal Advice to Clinicians.
- CACLD "Scoping Study to develop research project(s) to investigate the presence or absence of Lyme disease in Australia."
- LDAA's formal response to the Scoping Study report. LDAA (2014), Lyme Disease in Australia: Patient submission to the Australian Government Department of Health's "Scoping Study to develop a research project(s) to investigate the presence or absence of Lyme disease in Australia."
- Submissions from other Lyme patient advocacy groups:Main recommendations of the LDAA's Scoping Study response. Response proposed research priorities in original report (Pages 8-13); additional LDAA recommendation for epidemiological study (page 13); and General Recommendations (page 37).
- WALA (Western Australia Lyme Association)
- SLA (Sarcoidosis Lyme Association)
- Lyme Australia Recognition & Awareness (LARA) main submission
- Patient-focused Strategic Action Plan (Appendix A to LDAA Scoping Study submission).
- Royal College of Pathologists (RCPA) Position Statement (March, 2014) Diagnostic Laboratory testing for Borreliosis ('Lyme Disease' or similar syndromes) in Australia and New Zealand.
- Sample of RCPA's media campaign to promote their Position Statement (in public media and broadly distributed to medical practitioners via professional networks)
- Royal College of Pathologists (RCPA) e-Pathway newsletter (April, 2014) Position statement on Lyme disease penned by experts.
- Hospital and Healthcare News (8 April, 2014) New Position Statement On Testing and Management of Lyme Disease "Until advised otherwise, no confidence can be attached to the results of tests undertaken by non-NATA/RCPA accredited laboratories. The referring doctor and their patients must be advised that the results of these tests may result inaccurate diagnoses," says Dr Graves."
- Australian Doctor (8 April, 2014) Lyme disease not endemic in Oz: Experts.
- Australian Medical Association website (15 April, 2014) Lyme disease not a local-grown problem: Pathologists. "The peak body of pathologists has dismissed controversial claims that debilitating Lyme disease is endemic to Australia, and has warned patients and doctors to be wary of positive diagnoses based on tests carried out by non-accredited laboratories."
- LDAA's formal response to RCPA Position Statement: Lyme disease pathology: Counter argument to the Royal College of Pathologists Australasia Position Statement on Diagnostic Laboratory Testing for Borreliosis ('Lyme disease' or similar syndromes) in Australia and New Zealand. LDAA, April 2014.