Natalie and Matilda - LDAA lyme disease

During her years in the service of New South Wales National Parks, Natalie Young was often bitten by ticks. For years, this was no big deal. She lived a healthy lifestyle, surfing regularly on top of her active, outdoor, dream job as Field Officer Discovery Park Ranger.

She had renovated a couple of houses, was happily married and looking forward to the future, including starting a family. Life was good.

Left: Natalie and her daughter, Matilda

One particular day at work in 2002, not one, but 110 ticks embedded themselves into Natalie’s skin. Later, she found out she had crawled into a nest. Natalie had no idea what this event would set in motion. She had no idea about the potential health consequences of tick bites in Australia, and no idea of the protracted battle for her life that she would soon face. “No need to worry about ticks here,” she was told, early in her career. Almost twenty years later it seems hard to believe; that a public servant employed to manage bushland areas did not receive vocational training about ticks and potential tick-borne diseases.

As it turns out, the absence of that education was just the first of many instances where the Australian Government would fail to save the health and life of Natalie Young.

Natalie had never had any kind of reaction to tick bites before. She did seek medical assistance that day but the doctor “didn’t have time” to help with removing all those ticks. Some of them stayed attached for twelve hours, and some up to twenty hours as she had to try to remove them all herself. Let’s call this doctor’s response “system failure number two.” Before she ended up having to leave the National Parks service, Natalie was bitten by ticks at least another twenty times.

The first symptoms started in 2003; aching knees, hands and wrists. How was she to know that these are typical signs of Lyme disease? She kept working, having to ignore other, intermittent symptoms. She certainly didn’t want to appear “soft” in a male-dominated workplace. Natalie recalls the birth of her daughter in 2006 being a significant turning point. She just knew something was wrong. Natalie returned to work part-time a year after becoming a mum, but now each new tick bite resulted in reactions and symptoms. The next three years were peppered with more new symptoms and plenty more tick bites.

Symptoms. And more symptoms.

Her list of symptoms grew longer and more baffling. Severe fatigue, nausea, motion sickness, sensitivity to light and sound. Changing moods, stabbing shoulder pain, chest pains, wobbly legs, insomnia, tremors. Aching arms, spine spasms, numbness, migraines, seizures. Still, she heard not even a whisper about Lyme disease. None of the many doctors and specialists she visited even mentioned tick-borne illness. They did mention she needed to see a psychologist. They did tell her she’d never find out what was wrong.

When her throat spasmed and almost choked her, Natalie was told she had anxiety and was sent home from hospital.

We are still at the beginning of Natalie’s story, but it’s already too devastating to keep count of the times her government, “the system,” failed her. She was forsaken; each and every time she sought treatment from those who are taught to “first, do no harm,” but not taught to take tick bites seriously. And not taught to swallow their pride and admit “I don’t know what’s wrong with you.” It was starting to look like medical students in Australia were being trained to use “psych problem” as their back up diagnosis. With every test, every scan and every appointment, her despair and anger increased

In 2009 came the tick that bit Natalie’s back, and it really was the last straw. This resulted in anaphylaxis and another trip to hospital; and unbeknownst to her, the end of her career. Four days after that final tick bite, she couldn’t walk.

Natalie further declined to almost full paralysis encephalitis meningoradiculoneuritis (Bannwarth syndrome: a neurological disease characterised as intense nerve pain radiating from the spine) to Stiff-person syndrome (a neurological disorder characterised by progressive stiffness/weakness and impaired sensory function in the legs and arms), all as a result of the delayed diagnosis and persistence of Borreliosis and co-infections.

Lyme disease / Borreliosis
Lyme disease is a bacterial infection caused by a spiral-shaped bacterium (spirochete), Borrelia burgdorferi, and is also known as Lyme Borreliosis or simply Borreliosis. According to the WHO it is found in all regions of the world. It is most commonly transmitted by ticks.
Borrelia is almost always accompanied by other pathogens known as co-infections, and it is often referred to as Lyme and associated diseases for this reason. It is not officially recognised in Australia.

The disease caused severe immune suppression, leading to life-threatening allergies and a diagnosis of mast cell activation and ongoing autoimmunity. Lyme unaware doctors gave Natalie more steroids, which are contraindicated in Borreliosis as they can cause further dissemination of the disease throughout the body.

Australian doctors simply do not have appropriate knowledge around tick-borne diseases and that deficiency may cause patients harm, and/or result in their deaths.

Natalie was attending an increasing number of doctor’s appointments. After multiple sclerosis, ALS and Parkinson’s were ruled out, one practitioner considered tick bites as a possible source of Natalie’s symptoms. While she was advised that “we don’t have Lyme disease in Australia,” she did test positive for zoonotic pathogens Rickettsia and Brucellosis.

Finding a name for a “mystery” illness after being sick for a long time can be a double-edged sword. Relief and validation along with a good dose of hope – if it has a name, it has a cure, right? Finding these pathogens was progress, but by then Natalie was extremely debilitated. She certainly couldn’t go back to work, as she was confined to bed up to 19 hours per day. She struggled to walk and even hold a cup in her hand.

Fortunately, Natalie persevered and received her most important diagnosis yet, late-stage Lyme neuroborreliosis. Still suffering indescribable pain, her diagnosing doctor patted her back and flippantly advised, “you’ll be okay.” The next doctor had no idea what to do with her, but at least phoned experts in Germany for help. Lyme/neuroborreliosis was confirmed by blood tests sent to the US and Germany, and she also tested positive for several more co-infections.

The LDAA’s Sharon Whiteman interviews Natalie (on a good day)

Australia’s failure

An infectious disease specialist diagnosed Natalie, but referred her on to an immunologist. It wasn’t the first or last time she would be hand-balled from specialist to specialist throughout her journey.

It is hard to imagine how Natalie must have felt when she received the real diagnosis; starting on a program of antibiotics and experiencing a level of symptom relief (and symptom belief) for the first time.

Though this was a bumpy ride, including significant herxheimer reactions (intense symptom flare-ups), it seemed she may have a new path appearing in front of her after staring at a wall of practitioner indifference for so long.

It’s painful to have to pause here to warn you that this is not the beginning of a happy ending to Natalie’s story. It might have been, had she been residing in a different country. But since “we don’t have Lyme in Australia,” some of the knowledge and treatments that Natalie would go on to require wouldn’t be available either.

In Australia, those who “think” their chronic health symptoms relate to a tick bite are assumed to be delusional. Apparently, one must surely be a hypochondriac or quite simply mad to connect an illness (that they must be faking) with a little old harmless Aussie tick. To be told one’s illness is not real is, besides medical gaslighting at its worst, traumatic to say the least. For some, it is this Australian Government failure in particular that pushes them over the edge, and eventually leads them to take their own life.

To relate Natalie’s entire journey would require many pages and for the reader, many tissues. Maybe she will be well enough one day to tell her own story in her own words. It must be heard; it has been ignored for far too long. The condensed version of this chapter is that her medical care in Australia continued, and the early treatments helped a little, but eventually it became obvious that it was not going to be enough to restore her health nor even keep her alive.

By 2011 Natalie’s daughter Matilda was also showing signs of Lyme disease, and her immunologist recommended they both seek overseas medical help. With the assistance of Natalie’s parents, the whole family flew to the US. Between Natalie and Matilda, tests returned positive for Borrelia myamotoi (relapsing fever), Borrelia burgdorferi (the bacteria that causes Lyme), and co-infections Chlamydia pneumoniae and Babesia.

Work Cover ignored letters from Natalie’s doctors that advised she needed to go overseas for life-saving treatment. Her plight was disregarded, yet again. The injustice of her predicament added to her already overwhelming emotional load.

When experiencing this kind of illness, patients watch their life slowly crumble away in front of their eyes; and it is excruciatingly out of their control.

Often, it’s the first time in their life they have had to rely so greatly on others, and this weighs heavily on their shoulders. On top of that, they are trying to come to terms with the system’s attitude toward their disease. Despite her life falling apart, Natalie herself was still intact, if only just, and she still had the will to fight for her life and the precious life of her daughter.

Experts in America

The doctors she saw in the US and Mexico in 2018 were a breath of fresh air; they specialised in tick-borne illness, had appropriate experience and importantly, listened to what she had to say about her own body. Many lab tests were run which confirmed persistence as well as resistance of the pathogens to treatment. Her two treating doctors agreed that plasmapheresis (plasma exchange), intravenous Ig (antibodies) and anti-malarial medication should be the course of treatment.

Though her doctor in Mexico advised she needed six months of plasmapheresis, four weeks was her limit due to financial constraints. But in four weeks, she was able to reduce her pain and inflammation by half. She was far from being well, but Natalie was able to walk again, with distances gradually increasing to several blocks at a time. She was also able to withstand light and sound and her ability to hold a conversation was significantly improved. Though at first, the treatments intensified Natalie’s symptoms to the point of feeling “deathly ill,” they led to a breakthrough that many years of treatment in Australia had not been able to achieve.

But what can be tested and measured to prove the health benefits of receiving empathy, trust and understanding from treating doctors; the psychological respite from the indignity and inadequate care she had been subjected to for almost a decade in Australia?

While in the US, doctors confirmed Borrelia in both Natalie and Matilda, adding to the growing body of clinical knowledge of mother to foetus transmission. Young Matilda required two years of intramuscular penicillin and oral antibiotics to be well enough to go to school and to be “normally” active again.

Devastatingly, for Natalie the good news did not last. Three months after arriving home, her condition deteriorated to the point of being life-threatening once again. Her symptoms were nothing short of a nightmare – seizures every day, unable to walk, and burning in her inflamed lungs and brain. A blur of more doctors, more tests, more hospitals and more scans followed. This time around, she was even taken for a drug addict, while being shouted at to “stand up” by paramedics.

After hearing “you’re probably going to die if you stay here” from a doctor in 2019, Natalie returned to America to continue much-needed medical care. So far, Natalie had lost her job, her lifestyle, her marriage, her dignity and the care of Matilda. To be able to travel to America for treatment a second time, she would have to lose her beloved beachside home too. Goodbye house, thank you, Australian Government health policy on tick-borne diseases. All that is officially offered in this country for the tick sick is an insulting non-diagnosis: Debilitating Symptom Complexes Attributed to Ticks (DSCATT). Patients are left to fend for and fund their ‘fake’ diseases, themselves.

Again, the treatment overseas was successful; eventually resulting in Natalie walking unaided, carrying shopping and even cooking for herself. The icing on the cake was a negative test result for the formerly resistant co-infection Babesia.

For a little while, a ray of light shone on Natalie’s frayed and interrupted life.

Upon her return to Australia, she even enjoyed walking on the beach accompanied by Matilda, for the first time in a long time. She even taught her daughter how to ride a skateboard, teaching her skills that she is proud to report Matilda now excels at. She still needed a lot of help to get by, but her progress enriched her on all levels.

We don’t have Lyme here

It is heartbreaking to have to report that the current chapter of Natalie Young’s health odyssey started cruelly, with a return to severe symptoms. This time it was six months before she started deteriorating. Five months of gruelling medical treatments in the US, for just six months of some kind of quality of life. Only nine months of Natalie’s life have been “liveable,” since 2009. Please, take a moment to let that sink in. And please, take a moment to consider that her entire illness may well have been prevented or at least been limited to a treatable early-stage infection.

Over the last two years, she has been turned away by multiple specialists and hospitals here in Australia, and even ridiculed by Lyme-ignorant doctors.

None of Natalie’s practitioners will contact or liaise with her American Lyme and neuroimmunology specialist, who holds a combined treatment history of over 15,000 patients. None have requested approval to be able to administer the intravenous Ig and plasma treatments that she desperately needs to stay afloat. And “the system” will not recognise all of her test results from the US.

Over and over again, hospital staff have wanted to administer psych meds or sent her home with antidepressants.

Countless doctors have dismissed Natalie because they do not believe her, or do not understand her condition and therefore do not know what to do. “We don’t have Lyme here” is their mantra, despite all of Natalie’s pathological proof and intricate knowledge of her health and her disease. It is risky for Australian doctors to treat Lyme, and there is precious few left who are brave enough to apply their Hippocratic oath to all patients equitably.

She recalls a statement from one doctor in particular “I like you, but not enough to lose my licence treating you.”

The governing body for health practitioners in Australia has been known to hunt down and penalise those who diagnose and treat the disease that has been decreed not to exist in this country. This tragic story doesn’t just highlight Australia’s need for genuine tick-borne disease specialists and appropriate treatment clinics, but also its need for a remedy for deeply engrained medical arrogance.

From 2019 until now in 2021, Natalie has endured a surreal merry-go-round of doctors, hospitals, tests, scans, pain, suffering and humiliation. She recalls 20 hospital admissions since 2019. Though she has recently found a compassionate specialist who doesn’t deny her reality and admits he and his colleagues simply don’t have appropriate knowledge for her situation, he cannot change the system he finds himself in. Natalie’s message for that system, our health authorities, is clear and simple:

“We need a [tick-borne disease] clinic, and we need it now.
The hospital system cannot look after us. We have nowhere to go.”

Having exhausted all possible and potential avenues for replicating the US treatments here in Australia, it’s clear that Natalie must return to her doctors in the US. However, lack of finances and a pandemic continue to thwart her ability to travel. She is still fighting to stay alive so she can, one day, get back to being a full-time mother to her daughter; get back to a life she actually enjoys. Though Natalie remains courageous, her hope is fading fast. She is weary beyond words but must still put on a brave face for her daughter, who has recently expressed the fear that she may soon become an orphan. Can you imagine?

“I’ve got GPs that are holding me, probably saving my life….to a degree….but it’s not enough, I don’t think it’s going to save my life.”

Natalie Young is remarkably, astonishingly resilient and fiercely determined to be here for her daughter as she grows up. She is also passionate about speaking her truth and taking action to end the medical abandonment of Australian tick-borne disease patients. But the sad, sickening reality is that despite the seemingly insurmountable suffering that she has managed to overcome so far, surviving odds that were never in her favour, Natalie may not be able to stay alive for very much longer.

Who do you think should be accountable for that?

How you can help


Copyright Lyme Disease Association of Australia