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In 2024, the Australian Government announced a Senate Inquiry into the diagnosis and treatment of Tick-Borne illness in Australia. Now that Tanya’s submission has been published by the committee, we can print it. It is quite long, but we hope it will give some insight into what Lyme patients face in Australia. We hope there will be some change, and compensation for patients, moving forward.

For background, ‘DSCATT’ or Debilitating Symptom Complexes Attributed to Ticks, is what the Australian Government calls Lyme Disease and other tick-borne illness. The guidelines/pathway mentioned are the 65 pages of information the Government released that were meant to help patients after the last Senate Inquiry back in 2016.

Dear Committee Members

Subject – Submission to the Senate Inquiry into access to diagnosis and treatment of tick-borne diseases

I am writing to provide my submission to the Senate Inquiry into the access to diagnosis and treatment for people in Australia with tick-borne diseases.

I would like to ask that you please take the time to read my submission in its entirety so you can see the impact tick-borne illness has had on me.

On page 14 of the DSCATT Clinical Guidelines, it states: “the Australian Government acknowledges that many of these patients experiencing debilitating symptom complexes are living in turmoil because their illness cannot be easily diagnosed and treated. With the causes of DSCATT remaining unknown, the Australian Government urges patients and health professionals to keep an open mind about the cause of a patient’s symptoms”.

I would therefore like to request that as you read my submission that does detail the turmoil my debilitating symptoms have had on my body, that you keep an open mind to the points I am making. I’d also like to ask you to consider while reading if this was your child or grandchild in the same situation, what changes would you like to make to the system for them?

I am a patient who was diagnosed with Lyme Disease (overseas acquired) and other tick borne illnesses (Bartonella, Babesia, Rickettsia) in 2019 after a long fight to work out what was wrong with me.

In this submission, I will summarise my story, the severe impact tick-borne illness has had on my life and I will address each of the terms of reference of this inquiry in relation to my story. I will also suggest essential changes that need to be made as soon as possible to the DSCATT guidelines and the way these illnesses are treated in Australia so others don’t need to needlessly suffer as I have.

My story

I was bitten by a deer tick whilst working in the woods at a summer camp for underprivileged children in New Hampshire, USA in 2005. New Hampshire is now part of the endemic zone for Lyme Disease in America. At the time there was no tick education in America, so when I found the tick after it had been attached for approximately 24-48 hours, I pulled it out with tweezers. Years later, I now know that is heavily advised against.

A short time after the tick bite I found a bullseye shaped rash around the bite site, but it eventually went away so I thought nothing of it. I had all the symptoms of Stage 1 Lyme Disease, but due to lack of education didn’t realise this at the time.

Had I been bitten now, I would have been issued with a course of antibiotics straight away while in the USA, as is the current protocol in America. At the time, I was not issued with this.

As the years went on, I developed more and more symptoms. I knew something was seriously wrong with my body.

In 2013, I broke my foot for the first time by tripping over my own feet. A GP noticed I had foot drop and referred me to a neurologist for testing. The neurologist noticed my symptoms were consistent with Multiple Sclerosis. I was tested but didn’t fully meet the criteria for diagnosis. The neurologist told me to go home and come back when I got sicker. I did but every time was brushed aside despite numerous abnormal neurological tests, often being told that as a young female it was probably “anxiety, depression or stress” despite no signs or symptoms of this.

Eventually a podiatrist picked up on my abnormal walking patterns, which were severe by this point. I was told I needed to see a neurologist urgently, which I once again did. This neurologist said to me “I think you should go home and google something called Lyme Disease, but I can’t talk to you any more about it”. Imagine how that felt, after years of trying to get answers to be given one but then be told to google a solution.

I eventually found a doctor who was able to connect me with an internationally accredited laboratory in Germany which specialises in testing for tick borne illnesses. My blood was air lifted to the lab, and came back positive for Lyme. I also tested positive to Bartonella and Rickettsia from an Australian laboratory.

Impact on my life

When I got my diagnosis, I was relieved because I finally had answers to what was wrong with me. The relief was short lived when I found out that despite having a serious illness that had been slowly destroying my body for years, I couldn’t get treatment in Australia.

All doctors were allowed to do was treat my symptoms, not the tick-borne illness causing them. Imagine telling a cancer patient we could treat the symptoms of their cancer, but not the cancer causing them. It would never happen because there would be outrage. Yet that is the situation tick-borne illness patients in Australia find themselves in.

When I realised how scared doctors in Australia were about talking to me about tick-borne illness, as they told me this, the neurologist telling me to google Lyme Disease made sense.

My condition has slowly deteriorated in the 20 years since my tick bite. I am at the point where my heart, bladder and legs are severely impacted with permanent damage. I have custom ankle-foot orthoses (solid custom made braces) holding my legs upright. The damage to my legs is so severe that one of the major WA universities uses them to teach their podiatry students as they have never seen anything quite like it.

I have implanted cardiac monitors and an infusaport to deliver the regular IV fluids I require to stabilise my heart rates and blood pressures. Every six months I have to go into the operating theatre for procedures to keep my bladder functioning.

I have extreme fatigue and constant vertigo. I regularly pass out due to heart rate fluctuations and am rated in the highest fall risk category.

I struggle to get out of bed, I can’t do basic household tasks such as laundry or emptying the dishwasher, I can’t drive, and I’m not even allowed to leave the house unaccompanied. Some days I can’t even get out of bed to shower. I require support workers multiple times per week to help me function.

Pre-illness I had a highly successful career. Now, I can’t work at all. I had mortgage insurance, private health insurance, income protection insurance and a large sum of savings. When you get an illness that isn’t recognised in Australia, these don’t pay out. This has put me into financial instability.

Due to me not getting the help I need in Australia, and my deterioration being so severe, I have been left with no choice but to travel overseas to access treatment. The money to do this has been crowdfunded by a group of my friends, with donors ranging from recipients of Australia’s highest honours to complete strangers who have heard about my story and are outraged I can’t get help in my own country.

At the time of this Senate Inquiry actually happening, I will be at a clinic in Cyprus undergoing treatment. At this stage, a lot of the damage to my body is permanent and irreversible due to the delay in treatment, but we hope this will stop me deteriorating more and improve my quality of life, even slightly.

I know your DSCATT clinical guidelines advise against this, however given the fact that the Australian doctors who helped some of my friends make a complete recovery from tick-borne illness have now been struck off the medical register, specialists won’t even talk to me about the illnesses and my body is barely functioning any more, I felt like I didn’t have a choice. I’m sure if you were in my situation with your options being continuing to get worse or possibly having some hope you would do the same.

I have researched my options carefully and despite your guidelines advising against each of the treatments I am undergoing, I have spoken to numerous patients who have had significant or complete recovery from this process. These treatments did for them what the DSCATT clinical guidelines failed to do – they saved their lives.

I would now like to address the Terms of Reference of this inquiry in relation to what I have experienced.

The initiatives and resources developed to improve awareness, diagnosis, treatment and management of tick-borne diseases in Australia since the release in 2016 of the Community Affairs References Committee report ‘Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients’.

I was diagnosed in 2019, three years after the last Senate inquiry. I saw over 10 doctors, including multiple specialists, spent large amounts of money on testing and waited over 10 years from severe symptoms starting for a diagnosis. In this time, I got sicker and sicker, and much of the damage done to my body is now irreversible. I will never get that time back.

Not only that but I faced two major challenges in my diagnosis process. The first was the doctors that told me because I was a young, high achieving female that my symptoms were “just anxiety, depression or stress” and wanted to write me prescriptions for medication for that on the spot despite me showing no signs or symptoms of any mental health conditions.

The second, and even scarier, scenario was that I had multiple doctors who even after the 2016 Senate Inquiry and despite my tick bite history being overseas acquired told me that even though they fully believed in Lyme Disease and co-infections, they weren’t allowed to talk to patients about tick-borne illnesses or they could lose their medical license. I was told this on four separate occasions. Each of these doctors sympathised with my situation, but ended the appointment without offering me any kind of support or plan moving forward other that to “try and find someone who was willing to take the risk”.

This shows that the initiatives and resources developed to improve awareness, diagnosis, treatment and management of tick borne disease in Australia clearly haven’t improved the situation for tick-borne illness patients in Australia.

It also shows that patients presenting with a range of incredibly serious symptoms are being brushed aside and not receiving the proper support or treatment options they need to stop them deteriorating more. If I had received adequate treatment ten years ago before my symptoms became serious, I wouldn’t be this sick now and I wouldn’t need the amount of support I need now.

The adequacy and effectiveness of the ‘debilitating symptom complexes attributed to ticks’ clinical pathway to support patients

  • The DSCATT clinical pathway has not made things better for patients, in fact it has made things worse.
  • I have a known tick bite from an endemic area in the USA, presentation of a bullseye rash shortly after the bite that is consistent with Lyme Disease, positive blood tests from an internationally accredited laboratory and a list of symptoms consistent with Lyme. All other possibilities have been ruled out by multiple neurologists. Yet under your clinical pathway, I am still not eligible for diagnosis.
  • You have a DSCATT clinical pathway for diagnosis, yet the clinical pathway emphatically states that DSCATT is not a diagnosis. This is incredibly confusing for both patients and medical staff/doctors.
  • Your clinical pathway states that in order to get a diagnosis, a patient must have laboratory evidence AND clinical evidence AND epidemiological evidence. How is this possible when there is no laboratory test that is 100% accurate and EM rashes only occur in up to 70% of patients?
  • In the initial assessment and support section of the DSCATT pathway (yellow section) it states that the clinical examination should check for the presence of a tick bite and rash. This doesn’t allow for those like me who were bitten years ago and don’t still have obvious signs of the tick bite.
  • In the differential diagnosis table of the DSCATT pathway (green section), it states that if a likely erythema migrans (EM) rash is present, antibiotic treatment should be started. This doesn’t allow for patients like me who were bitten years ago and are no longer presenting with the rash.
  • In the ongoing management section of the DSCATT pathway, it says “ongoing management and review of symptoms led by GP and evaluate new symptoms that arise”. Many GPs have researched management options as the guidelines instruct, only to then be sanctioned for treating patients with tick-borne illness.
  • Patients can’t get support such as Centrelink Disability, NDIS and insurance payments without a diagnosis. The DSCATT Clinical Pathway is putting people into financial instability, as demonstrated by myself and all my friends with tick-borne illness in the same position.
  • Under the clinical pathway, only infectious diseases specialists can make a tick-borne illness diagnosis. ID specialists are known for not acknowledging the existence of tick-borne illness in Australian patients, and this refusal to accept tick-borne illness as a possibility, especially in overseas acquired patients, is having a hugely detrimental effect on patients.

The following changes need to be made to the clinical pathway immediately:

  • Stop calling it DSCATT. Call it tick borne illness, which is what it is.
  • Have a realistic pathway to diagnosis, not something that blocks it and give doctors autonomy of choice.
  • Recognise positive tests from internationally accredited laboratories overseas who specialise in tick borne illness (and have a higher accuracy rate than other laboratories – source Armin Labs Germany).
  • Accept that false negative blood tests occur and include this in any clinical pathways;
  • Acknowledge that Lyme testing is not accurate 100% of the time.
  • Allow diagnosis based on clinical symptoms, with a criteria similar to patients with Chronic Fatigue Syndrome or Motor Neurone Disease, since there is no 100% accurate testing for Lyme Disease or tick borne illness anywhere in the world.
  • Adjust guidelines to allow for those who were bitten years ago who don’t still have an obvious tick bite site or EM rash as years have passed.
  • Provide real pathways to treatment and diagnosis for patients with overseas acquired Lyme Disease. You say Lyme Disease doesn’t exist in Australia – a lot of us didn’t get it here, we got it overseas in known areas, yet we still can’t access treatment. 
  • Acknowledge that not every tick-borne illness patient develops a bullseye rash (or any rash) – in fact, only 70% of patients ever develop a rash (source: CDC).
  • Allow GPs who specialise in Lyme Disease/tick-borne illness to be able to diagnose and treat patients, instead of striking them off the medical register or reprimanding them. There are a number of doctors in Australia who have received amazing results in treating patients with tick-borne illness who have then been reprimanded by AHPRA and are no longer able to treat patients.
  • Recognise that late stage Lyme exists (as stated by the CDC) and allow for treatment of this.
  • Acknowledge that person to person transmission of tick-borne illness has been acknowledged by the CDC in America, and that they currently advise tick-borne illness patients to not donate blood.

 Current research to advance the management of complex inflammatory diseases

  • There are a number of doctors in Australia who have been successful in treating patients with severe tick-borne illnesses and achieving amazing long lasting results. Instead of receiving research funding so they can help more patients, they have been reprimanded by AHPRA and are no longer allowed to practice. Their licenses should be reinstated.
  • Representatives from the Lyme Disease Association of Australia, their medical advisors and patient representatives should be on the committees that allocate funding to tick borne illness.
  • There are a number of people in Australia who are educated and have extensive experience in tick borne illness. Instead of hiring am international corporate entity to create your clinical guidelines like the previous senate inquiry, I would suggest putting together an educated advisory panel specialising in tick borne illness to make sure they are relevant to the community they are aiming to serve. At the very least, the Lyme Disease Association of Australia, their clinical advisors (doctors who specialise in tick borne illness, not those who deny its existence) and representatives from the patient community across Australia be actively involved in this process.

Other related matters

    There are thousands of patients across Australia in the same situation as me. It is often implied that we are making up or exaggerating our symptoms for financial gain or attention. I can assure you, on the off chance all of us were going to gather together to present with the similar tick-bite histories and symptoms to make up an illness, tick-borne illness is the last one in the world we would pick as there is no financial gain or attention to be had.

    We have been swept under the carpet and left to get sicker and sicker. I would argue that we have been medically abandoned in our own country, and that it is negligent of the Australian Government, AHPRA and the AMA to keep ignoring our situation.

    On page 46 of the DSCATT clinical guidelines it says that “key dimensions include respect, emotional support, physical comfort, information and communication, continuity and transition, care co-ordination, access to care and partnerships with patients, carers and family in the design and delivery of care”. None of these have been provided to patients since these guidelines were released. I hope that through this senate inquiry, these goals can be reached. Thank you for taking the time to read my submission.

    Yours sincerely

    Tanya Dupagne OAM, CF, HonDUniv (ECowan), B.Comm

    Tanya Dupagne

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