Lyme disease outbreak

Go to story details and video

Monique Wright: In 1954, a germ laboratory opened on an island off the north-east coast of the United States. This is a secretive research base which studies the most infectious animal diseases on Earth. Plum Island was chosen carefully. It would house deadly and highly contagious viruses that were too dangerous to be stored on the mainland.

Not allowed to land on the island. If you ever got anywhere near the island,
they'd be right on top of you.

Monique Wright: The lab's official mission was the study of animal diseases, including bacteria carried by ticks, but scientists also secretly carried out biological warfare experiments.

If you look up the goals of bio warfare in the modern times, it's to disable the enemy and make their life miserable.

Monique Wright: 15km from Plum island is the village of Lyme. It looks like a wintry postcard but it's also the site of a modern-day viral outbreak named after the town - Lyme disease. It was here in the small town of Lyme, Connecticut that the disease was first identified. Pockets of residents started reporting mysterious symptoms which no doctor could identify. That was in 1975. We now know Lyme disease is delivered by the bite of a tick. When a tick infected with the bacteria bites, it transfers the infection,
via its saliva, into the bloodstream. Once there, it moves like a corkscrew and can launch multiple attacks on different parts of the body.

Dr Joe Burrascano: This tick, I call it nature's dirty needle. It can bite birds, mammals, marsupials, reptiles. It's a chameleon - it learns how to adapt, it's a survivor.

Monique Wright: In the late '70s, Dr Joe Burrascano was a GP working in a town 30km from Lyme.

Dr Joe Burrascano: I had a lot of patients with this strange constellation of symptoms, this strange illness. Nobody knew what it was.

Monique Wright: What makes Lyme disease so difficult to diagnose is that it mimics the symptoms of a range of illnesses.

Dr Joe Burrascano: The infection is unusual in that it goes to every single part of the body. You might have pain in the joints and see an arthritis doctor and then you might have heart troubles and see a heart doctor. Then you might have headaches and see a neurologist or visual troubles and you start to see an eye doctor. So then they start to label you as being a doctor shopper and then, you know, the patient himself or herself may lose confidence and say, "Well, maybe I am crazy," and that's when the trouble starts.

Monique Wright: This is Mandy Hughes...

MAN: Are you able to stand up, honey?

Monique Wright:..and this is what Lyme disease did to her.

Man: Right, I'm going to shut this off so we can go back in the house, OK?

Monique Wright: What was the pain like?

Mandy Hughes: Oh, the pain was...It's like being hit by a truck and then being denied any medical treatment.

Monique Wright: Mandy was a trainer at SeaWorld. At 19, she was bitten by an infected tick. She broke into hives. Her temperature soared.

Mandy Hughes: It's all over your body and it is excruciating pain.

Monique Wright: Mandy was quickly diagnosed with Lyme disease. It was treated with antibiotics and she thought she was cured. Then it flared up again but doctors misdiagnosed the symptoms as multiple sclerosis. 10 years and 20 doctors after she was bitten, a blood test confirmed she still had Lyme disease. How sick were you?

Mandy Hughes: I was so sick. I was in a wheelchair and people had to help me get around. I'm this frail, fragile thing and I'm like, "If I keep going at this pace, you know, "I don't know if I'll make it to 30, "I don't know if I'll make it to 35."

Monique Wright: Mandy was infected in Florida in 1995, more than 2,000km from the first outbreak in Lyme.

Dr Joe Burrascano: Well, in the United States, Lyme is the fastest-growing infectious disease and, unfortunately, the incidence is increasing year after year.

Monique Wright: Lyme disease was spreading fast. New cases were being diagnosed across America and beyond.

Dr Joe Burrascano: I've seen Lyme patients from Australia who never left the country who definitely have Lyme disease and there are physicians in Australia who have seen these patients too.

Monique Wright: And it's here, in Australia, where the already strange story of Lyme disease gets even stranger. Despite hundreds of cases, our health departments are convinced it's a foreign problem.

Natalie Young: People just won't listen to you so your family is forced to, you know, pretty much send your blood overseas to countries that do know about this and fight just to get the basic treatment started to save your life, because I was dying.

Monique Wright: Natalie Young is a Coffs Harbour mum. Once extremely active, a talented surfer and a national parks ranger. Do you remember being bitten by a tick?

Natalie Young: Yeah, bitten by a lot of ticks. I was first bitten by 110 ticks in 2002.

Monique Wright: On one occasion?

Natalie Young: Yeah, one occasion - I crawled into a nest of ticks.

Monique Wright: The symptoms started soon after. I mean, I couldn't swallow, I lost control of my bladder, I couldn't walk, I lost the ability to talk properly.

Natalie Young: Just so many symptoms - over 70 symptoms at once. It's just, it's torture, it really is. Dear Matilda, it's your mum. Just wanted you to have this picture. It's full of colour and life.

Monique Wright: Natalie was so sick, she wrote a farewell letter to her daughter.

Natalie Young: I just want her to have something and to show her I was full of life and colour before this, that I wasn't always like this and that I actually loved life.

Monique Wright: GPs couldn't help Natalie, neither could specialists. She went to 17 doctors. A neurologist even suggested it was all in her head.
Eventually, Natalie's blood was sent to the US and Germany for tests. Only then, seven years after she was bitten, was she diagnosed with Lyme disease.

Matilda: One day my mummy found me crying in my room.

Monique Wright: But as bad as that is, the story gets worse. Her daughter, Matilda, also has the disease. It's possible Natalie passed it to her during pregnancy. I've cried my eyes out and I blame myself but now I blame nobody else but the Government.

Dr Peter Mayne: A lot of patients come to me with a self-diagnosis of Lyme disease because they've been so fed up and they've gone onto the internet and they have worked out, "I might have Lyme disease."

Monique Wright: Dr Peter Mayne has a practice near Port Macquarie. The area has a high infestation of ticks. He's diagnosed 160 patients from all over the country with Lyme disease. Some have never left Australia.

Dr Peter Mayne: So you find ticks on the cat?

Woman: We have got a paralysis tick off the cat, yes.

Dr Peter Mayne: Right, OK. That's the tick that's believed to cause Lyme disease in Australia.

Monique Wright: 20 years ago, a health study concluded Australian ticks didn't carry the disease and today, despite cases where patients have never left Australia, like 6-year-old Laura...

Woman: No, Laura has never been out of the country.

Dr Peter Mayne: She's never left Australia?

woman: She's never left the country.

Monique Wright: ..our health departments still say there's not enough evidence. In America, Lyme disease has been described as a national health crisis.

Dr Peter Mayne: Yes.

Monique Wright: Would you say it's a national health crisis here in Australia?

Dr Peter Mayne: Oh, it's worse than that - it's not even an identified health crisis yet. There's no doubt that she's got Lyme disease on these results that you've sent.

Monique Wright: So what you're saying is that the overseeing bodies are saying "This doesn't exist. "Let's put our head in the sand about it."

Dr Peter Mayne: They're being a little bit more careful than that. They're not saying it doesn't exist, they're just saying there's no proof that it's here.

Dr Jeremy McAnulty: We certainly can't rule out that Lyme disease is acquired in Australia but the evidence we have to date certainly doesn't support that.

Monique Wright: Dr Jeremy McAnulty is with NSW Health. The department has a well-rehearsed line...

Dr Jeremy McAnulty: There's not a lot of evidence that we have Lyme disease here.

Dr Jeremy McAnulty: ..which Dr McNulty delivers...While it's possible Lyme disease is here and transmitted locally, we don't have a lot of evidence to support that.

Monique Wright: ..again...

Dr Jeremy McAnulty: While we can't exclude Lyme disease being here - maybe it is - the evidence we have to date really doesn't support that.

Monique Wright: ..and again...

Dr Jeremy McAnulty: That's not to say it's not here - maybe it is, maybe the evidence isn't in yet - but New South Wales has been kind of leading the way nationally in terms of getting expert panels reviewing the evidence.

Monique Wright: Sorry, who says that New South Wales is leading the way?

Dr Jeremy McAnulty: Well, we do, we have been working...

Monique Wright: So many people disagree with that, doctor. What we do know from cases all over the world is that early diagnosis can beat it almost every time. But because Lyme disease looks like so many other illnesses, getting that diagnosis is never easy. Take us back. What happened?

Sam Stosur: I got this lump in the side of my neck which all of a sudden, you could kind of see all the time and I thought, "OK, that's not really normal and not right." Then I started getting really tired. I was sleeping in the locker room before the matches. Probably not eating well, then all my glands swelled up so I kind of looked like a hamster at one point with not much of a neck.

Monique Wright: Sam Stosur's first symptoms surfaced in 2007 at Wimbledon.

Sam Stosur: I think I saw four different doctors at Wimbledon and no-one could quite put their finger on it.

Monique Wright: How were you during all of this?

Sam Stosur: Kind of felt like I was banging my head against a wall because I knew there was something not right but nobody could tell me what it is and they sent me home with sinusitis and bit of codeine and "Take that and you'll be fine."

Monique Wright: Four months later in the United States, she was diagnosed with Lyme disease. Sam took several months off and treated the disease with antibiotics.

Sam Stosur: I've always said I know I'm the lucky one who got diagnosed quite quickly. I do feel for everyone out there who hasn't been able to get that help and receive the treatment that they need to simply because they live in Australia. Really, it's really sad to think that people's lives are kind of really suffering when it could be, you know, fixed if they got the right help they needed.

Monique Wright: I've heard this saying that Lyme disease might not kill you but at times, you wish that it would.
Have you ever felt like that?

Natalie Young: Yeah, yep, I um...I still go through those periods but the first 2.5 years, I'm just saying "Please, take me, God, just take me."

Monique Wright: Natalie and Matilda are taking antibiotics and are getting better. So you would have been able to do this when you were sick?

Mandy Hughes: No, I couldn't even support my own weight on structured land.

Monique Wright: In America, after eight months of intravenous antibiotics, Mandy is almost back to her old self.

Mandy Hughes: I'm just excited that I'm supporting my own weight on the ice.

Monique Wright: Yeah, so am I!

Monique Wright: 30 years on and the disease is still a plague on the town of Lyme. It's the perfect setting for a conspiracy theory and even though birds or deer could have carried a virus to the mainland, those who have tracked
the devastating disease say it's unlikely.

Dr Joe Burrascano: There's been folklore that Lyme was developed there as bio warfare and that's rubbish, that's not true at all. In fact, they found Lyme in mummies 5,000 years old in Europe so obviously, that answer is moot.

Monique Wright: Could Lyme be in Australia?

Dr Joe Burrascano: It'd be silly to think that Lyme is present in every other part of the world but not Australia. Of course it is there, of course it is.