Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697633696590.pdf (Australia)
Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patients: Senate Community Affairs References Committee inquiry In this submission to the Senate Inquiry I outline my personal experience with contracting a tick-borne illness (Lyme disease) in Australia, as verified by blood tests conducted overseas.
I seek to highlight the inability to have my condition diagnosed by the Australian public health system, my challenges in having positive blood test results recognised in Australia, and my difficulty in being able to access treatment for this chronic and debilitating health condition.

I also highlight what I believe are the key deficiencies in the diagnosis, treatment and prevention of tick-borne illness in Australia.
In October 2012, I went for a camping trip to Croajingolong National Park on the Victorian/NSW border (Mueller Inlet campground).

On the 4-day camping trip my husband removed at least six attached ticks from my skin.

I did not develop a rash from the bites but during the trip I began to experience jolting and painful electrical sensations in my arms and a flu-like feeling of malaise.

A month after the trip I began to experience dramatic night sweats, high temperatures and dizzy sensations.
Over the next few months I developed severe fatigue & weakness, neurological dysfunction (tingling, numbness, burning and stabbing sensations particularly in my limbs and face), blurry vision, migratory joint & muscle pain, tinnitus, chronic headaches, dizziness & light-headedness, and pronounced hair loss.

Most of these symptoms are ongoing and can come and go at regular intervals throughout my day.
When researching my symptoms, I read on the NSW Health Department website that Lyme disease did not exist in Australia, and I therefore disregarded the possibility that the tick bites could be the cause.

During 2013, I saw at least three GPs and over five natural medicine practitioners in the hope that someone could detect what was wrong.
My blood tests returned an unusually high antinuclear antibody (ANA) count, which is an indicator of an autoimmune connective tissue disease (my ANA reading was 1280 while normal range is below 160).

A high ANA count can also be an indicator of Lyme disease; however, no health professional during this period suggested the possibility of a tick-borne disease (please note no health professional questioned if I had travelled out of Australia and could have contracted Lyme overseas).
While the high possibility of an autoimmune condition had been identified I was not yet clear which treatment to proceed with.

My fatigue became increasingly debilitating and I could no longer work full time; my physical and mental capacities were considerably reduced from my normal functioning.

In December 2013, I went to the Emergency Department of St Vincent’s Hospital in Melbourne with suspected multiple sclerosis (MS).
My extremities had become increasingly numb, I was having heart palpitations and my vision was intermittently blurry.

I had an MRI which showed ‘abnormal lesions in cerebral white matter’ but was not indicative of MS. During 2014, I was seen by three Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 28 departments in St Vincent’s Hospital: Neurology, Neuro-immunology and Rheumatology.
All departments and tests suggested that I had no detectable health issues.

During this time I went to a new integrative GP who said it might be worth completing an online questionnaire, developed by a Lyme-literate doctor in the United States (US).

I scored over 50, which is interpreted as ‘high probability of tick-borne disorder’.
The integrative GP then suggested I arrange to send blood for testing to the Igenex Laboratory in the US—a laboratory which meets international standards for quality & competence and which specialises in clinical and research testing for Lyme disease and tick-borne diseases.

This test cost me over AU$700.

I sent my blood for testing, and in December 2014, I tested positive for Borrelia burgdorferi.
In my results, my Lyme immunofluorescence assay (IFA) was greater than 80, indicating a strongly positive result.

My Lyme IgM Western Blot (WB) was positive for bands 31, 39, 41 and 83–93, meeting the US Centers for Disease Control and Prevention (CDC) criteria for a positive IgM WB.

My CD57 was low at 17 (where <40 = low, 40–98 = borderline and >98 = normal possibility of chronic illness from Lyme.
1 ) suggesting the My GP was not experienced in the area of treating tick-borne disease, but said we could monitor my key health indicators through regular blood tests.

However, my GP was subsequently told directly by Medicare to avoid ordering additional types of testing such as ANA and CD57 under bulk billing, regardless of whether the patient has previously received a positive blood test for Lyme.

So the GP identified there would be a limited number of times we could test these indicators.
When receiving Melbourne Pathology results through this GP, results came with a comment that “there is insufficient evidence to support this as a screening test for chronic Lyme” and did not identify that my low CD57, now 11, was of concern.

The way these comments are worded further prejudices doctors against considering the possibility of a low CD57 as being one possible indicator of a tick-borne illness in the presence of other indicators.
Lyme associations worldwide recommend monitoring with the CD57 test, which can be one indicator of Lyme or HIV.

In February 2015, I returned to the Department of Rheumatology at St Vincent’s Hospital with the positive blood test results for Borrelia from Igenex.

The Rheumatology Department told me that overseas testing would not be accepted and I would need to get positive testing via Australian pathology.
This was not practical as I had already started herbal treatment (after receiving Igenex results) and testing is not considered accurate after commencing treatment.

Additionally the testing ordered through St Vincent’s would be a single tiered test, which does not adequately test for Borrelia in contrast to the ‘two- tier testing process adopted by USA and Europe’.

commence any form of treatment on the basis of overseas blood test results.
So, I 2 St Vincent’s Hospital would not 1 www.igenex.com/files/CD57.pdf 2 hwww.lymedisease.org.au/wpcontent/uploads/2010/11/20140129LDAAScopingStudyResponse.pdf Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 28 was released into the community with a debilitating disease, unless I chose to cease treatment and get retested, and even then not be assured that Australian testing would detect the antibodies.
Another reason I was reluctant to cease treatment was because I had already invested a lot of money (and time) in seeking treatment.

I have not been able to work full time and have been on a low income since becoming unwell.

Both natural medicine practitioners who specialise in Lyme, and allopathic specialists are prohibitively expensive: initial consultations typically cost over $600 and subsequent appointments over $200, and there is often a wait period of up to 3 months to get in.
There are only few practitioners specialising in this area, but a large number of people in the community seeking treatment.

I could only find one specialist who gave treatment with antibiotics, and it is my understanding that this doctor stopped treating with antibiotics after receiving a warning from the Australian Health Practitioner Regulation Agency (AHPRA).

It is my understanding that AHPRA has suggested that treating vector-borne illness with long-term antibiotics is an inappropriate use.
This is strange because broad- spectrum antibiotics (doxycycline) are routinely prescribed as a prophylactic for Australians travelling to malarial areas.

If I could find an affordable doctor to prescribe the internationally recommended 4–6 weeks of treatment with broad-spectrum antibiotics I would be keen to try this, but I do not know where I can find a GP who will prescribe this basic treatment.
I continue to suffer debilitating neurological symptoms and this has affected all aspects of my personal life, my health, my ability to work and my future.

In summary I am very concerned the Australian government’s response to tick- borne illness including; ● o The denial of health authorities that people are becoming unwell after being bitten by ticks in Australia.

This denial results in o a lack of education of GPs or hospitals on identification and diagnosis of tick-borne illness.
This means people presenting with symptoms immediately after a tick bite are not easily able to access broad-spectrum antibiotic treatment which can prevent the disease from developing into a chronic illness.

people with a chronic and debilitating illness from tick bites are being locked out of medical treatment and recognition in our health system.

● The absence of a precautionary approach to tick-borne illness.

Tick - borne illness is widely recognised across Europe, the UK and the US.
A precautionary approach should be adopted if Australian patients have positive blood tests from overseas laboratories (meeting international standards) and have all the classic symptoms.

There has been no attempt by the health authorities to create any kind of treatment path for people with classic symptoms of tick-borne illness.
Despite Borrelia burgdorferi Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 28 not yet being found in Australian ticks it is clear ticks here are transmitting harmful bacteria and effective treatment methods should be investigated.

Inadequate public education on the avoidance of tick bites and the dangers of tick-borne diseases, especially in areas where ticks are common (including coastal National Parks across Australia).
I have contacted Parks Victoria and asked them to consider signposting in National Parks where tick bites are common and alerting visitors that if they have concerning symptoms after a bite they should seek medical help.

A representative from Parks told me this would not be possible because the problem could not be narrowed down to any location.
The absence of a bulk-billed two tiered testing procedure which has been shown as superior to the single tiered testing procedure currently conducted in the Australian medical system.

Barriers to bulk-billed blood tests to monitor chronic tick-borne or autoimmune disease indicators.

GPs are actively discouraged by Medicare to bulk-bill these tests, creating an additional barrier, especially for low- income patients.
No recognition or financial support for people suffering confirmed tick- borne illness, as there is a denial of this as a chronic and debilitating disease in Australia.

People who have clear indicators that they are extremely unwell begin to feel ashamed and isolated because of the messages they receive from doctors, hospitals and health authorities.

Due to the prejudice against tick-borne illness they are told they are imagining their symptoms.
This type of discrimination can exacerbate stress, which can lower immunity and result in disease escalation.

Limited evidence of attempts to protect the wider community by screening blood in blood banks or making blood donors aware of risks of blood-borne illness transmitted by ticks.

According to the CDC, “Lyme disease bacteria can live in blood that is stored for donation.

Individuals being treated for Lyme disease with an antibiotic should not donate blood.
Individuals who have completed antibiotic treatment for Lyme disease may be considered as potential blood donors.” 3 ● ● ● ● ● ● Potential for harm to fetuses when infected pregnant women go undiagnosed and untreated.
According to the CDC, “Lyme disease acquired during pregnancy may lead to infection of the placenta and possible stillbirth; however, no negative effects on the fetus have been found when the mother receives appropriate antibiotic treatment.” 4 3 http://www.cdc.gov/lyme/transmission/index.html 4 http://www.cdc.gov/lyme/transmission/index.html Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 28