Matt's Lyme journey

Tackling Lyme Disease aka MSIDS in Australia

The Australian Situation

The first clinical case of Lyme disease was identified in Australia in Branxton (near Maitland, NSW) in
1982, yet thirty years later many Lyme disease patients struggle to obtain diagnosis and appropriate
treatment in Australia. As well as acquiring Lyme disease locally, many Australians have acquired, and
continue to acquire, Lyme disease overseas, and yet remain unable to obtain a diagnosis and treatment
on their return to Australia.

Lyme disease is the largest and fastest growing tick borne illness in the world. It is commonly
transmitted to humans through the bite of an arthropod vector infected with the bacteria (Borrelia
burgdorferi). Lyme disease has three stages that are characterised by a progressive worsening of
symptoms as the bacteria disseminates throughout every organ and system in the body. Lyme disease is
frequently called the great imitator because it can mimic many other diseases, especially
neurodegenerative diseases like Multiple Sclerosis, Parkinson’s disease and Motor Neurone disease
(ALS) among others.

Obtaining a diagnosis of Lyme disease is fraught with inconsistency in the Australian medical system.
Lyme disease is not even considered, in a differential diagnosis, by Australian doctors because of a long
standing position held by Australian governments who provide advice to the medical community that
‘Lyme disease does not exist in Australia’. There is dated research about competent vectors and hosts
capable of transmitting Lyme disease; and as Lyme disease is not mandatorily notifiable there is no
coordinated surveillance. Without a contemporary epidemiological study there is little evidence to
support the argument that Australia is the only continent on earth that does not have this vector borne
disease.

For many patients, reaching a correct diagnosis is a long process. On average it takes up to six and a half years from the
original bite to obtain a diagnosis due to a lack of public and medical awareness. Without a specific
Lyme disease education campaign within the medical community, it means that all Australians at risk of
acquiring Lyme disease are likely to progress to the chronic stage before they are properly diagnosed.
The situation is unacceptable.

The testing for Lyme disease is also controversial. Testing in Australia primarily relies on two specialist
laboratories that test for antibodies against Borrelia strains that are not sensitive enough or may not be
present in Australia. As such, Australian patients are being tested for strains of Borrelia that they may
not be infected with, hence a low rate of positive tests. Patients that can afford it send their blood to
overseas reference laboratories to confirm their clinical diagnosis. There is considerable speculation
that an Australian strain of Borrelia exists which has not yet been isolated for commercial testing
purposes.Research into the presence of an indigenous strain of Borreliosis is urgently required.

Like diagnosis and testing, the treatment of Lyme disease is also a controversial issue. There are two
sets of opposing guidelines that are used for the treatment of Lyme disease emanating from the United
States. Research about optimal treatments is often inconclusive, which further undermines the validity
of the treatment guidelines. The Australian position relies on the advice that “most cases of Lyme
disease can be treated successfully with a few weeks of antibiotics”. This is the heavily contended point. Many believe that long term treatment is required for any hope at complete remission.

Patients also reported that Lyme disease is lowering their quality of life; sadly this was a common
theme. Many patients report the personal consequences of living with Lyme disease, from the
significant decline in their quality of life, the deficits in their functionality, the dwindling social
connections and the increasing social isolation exacerbated by having a long term illness where
recognition and education is almost non- existent. It impacts their work life and their ability to maintain
employment or schooling.

The major decline in the health of Australian Lyme patients are comparable
to someone living with type 2 Diabetes or a recent heart attack; their future is grim.
There is a considerable financial burden upon Australian Lyme patients who report having to give up
their work due to declining cognitive function which in turn impacts upon their ability to afford health
care and ongoing treatment. Many of these costs might have been avoided if patients were tested
appropriately, diagnosed promptly and treated accordingly for Lyme disease, before it became chronic.
This report provides evidence that Australian Lyme patients are being misdiagnosed, mistreated and
misunderstood by the medical community, allied health professionals and the Government.

Australian Lyme patients face discrimination every day in obtaining appropriate diagnosis, in the availability of
testing services, in accessing medical professionals who will treat them and in the economic burdens
they are enduring in the pursuit of restoring their health.
There exists a serious gap between the medical community’s acknowledgement of Lyme disease and
the reality of the Australian situation as presented in this study; it requires immediate attention.

The full report discussed above is available here

Update: 24/04/2013:

The Australian government has today formed a committee (CACLD) containing representatives from over 10 separate organisations to provide advice on the evidence for Lyme disease in Australia, diagnostic testing, treatment and research requirements.

The Committee will also provide advice on the most appropriate ways to disseminate information to health professionals and the general public. This is GREAT news and a giant step forward in this giant struggle.

The Government notice is available for viewing here.

Update: 30/05/2013:

At this stage the CACLD is proposing a scoping study to work out what research is required to prove that Lyme disease is in Australia (and how to fund that research). It is envisioned that after this scoping study is completed in the next few months, the research to find the causative agent that is causing Lyme disease in Australia will be done (possibly starting in early 2014) & we will get a definitive statement from the Chief Medical Officer about the existence of Lyme disease in Australia at the conclusion of that research study. All this research will take time to complete (so we may not get a statement from the CMO until 2014-2015). In the mean time, the Chief Medical Officer of Australia is proposing that temporary diagnostic pathways and treatment protocols be created for Lyme disease by the end of this year (2013) – this will hopefully help patients in their dealing with the medical system, and begin to reduce discrimination against Lyme disease patients.

Update: 08/08/2013:

Today, the Chief Medical Officer of Australia has sent out a notice to all Australian GP’s informing them of the following 2 key points:

A) There is currently an investigation into the possibility of there being an Australian strain of Lyme disease that does not test positive on standard tests, as many people contract a “lyme like” illness in Australia that never left the country, this is the case in other countries where different strains are known to exist.

b) There is a need to raise awareness of Lyme Disease as a possible diagnosis in returned travelers who may have acquired the infection whilst visiting overseas endemic areas. People are regularly denied legitimate lyme disease treatment even when coming from overseas because of the stigma of the disease name.

Link to Clinician advice

Summary of discussions so far in the CACLD

Update: 3/9/2013

The Committee met with the following outcomes:

  1. Members were provided with an update on the progress of the scoping study being conducted to identify the research needs for an investigation into whether a causative tick-borne microorganism for Lyme disease exists in Australia.
  2. Members received an update on current research being conducted on ticks at the Murdoch University and potential collaborations and assistance was discussed.
  3. Members discussed a diagnostic pathway in the context of recent publications comparing North American and European testing approaches. Members agreed to continue this discussion out of session.

 

Update: 27/11/2013

The Committee met  with the following outcomes:

  1. The scoping study for research to identify and characterise an indigenous causative microorganism for Lyme-like disease in Australia and its vector to be placed on the Department of Health’s website and comments to be invited. The study will also be provided to Chief Health Officers and the National Health and Medical Research Council.
  2. A report on the first meeting of the Diagnostic Pathway Working Group was provided to members.
  3. The Department of Health will investigate organising a Diagnostic Forum and a Clinical Round Table meeting in the first half of 2014.
  4. Members acknowledged that the work of the CACLD will extend into 2014.

 

More up to date details are available here.

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