JENNY BROCKIE: Welcome everybody, good to have you here. Vivianne, you were bitten by a tick while you were bush walking on the South Coast last year. What happened after that?
VIVIANNE: Well, my friend Julie got the whole tick out and we were very pleased with that because we thought great, we've got the head out, fine.
JENNY BROCKIE: And what happened after that?
VIVIANNE: About three minutes after that I felt very warm and I said, I don't feel so good and I said I can't see and I just went down, that was it.
JENNY BROCKIE: Julie, what happened at the time?
JULIE: All of a sudden she just did a huge vomit and then went unconscious. We popped her on her side and rang 000 straight away. And the ambulance came within five or ten minutes which was fabulous.
JENNY BROCKIE: How sick was she?
JULIE: We, Jackie, my friend couldn't feel a pulse, we were pretty worried actually, yeah.
JENNY BROCKIE: How long did it take for you to recover from that?
VIVIANNE: Well the ambulance came and they put quite a lot of adrenaline into me so. And then I went to hospital overnight with a steroid drip but after that I was fine.
JENNY BROCKIE: And what did they tell you had happened, what did they tell you had caused that?
VIVIANNE: They said that I had an extreme anaphylactic reaction.
JENNY BROCKIE: To the tick bite?
VIVIANNE: Yeah, because there were no hives, no rash, no shortness of breath, no throat swelling, nothing, and I'd had ticks before plenty of times in my life with no particular reaction.
JENNY BROCKIE: How do you feel about ticks now?
VIVIANNE: So because my anaphylaxis is so extreme, even a tiny baby tick will have a very serious, possibly fatal effect, so now I can't, I'm concerned about living on the east coast of Australia where the paralysis tick is endemic. So that's meant that I've left my house, my family, my friends and I'm searching for somewhere that's safe for me to live.
JENNY BROCKIE: And where that might that be?
VIVIANNE: Um, I think the band of 30 kilometres down the east coast of Australia and large parts of Victoria have that particular tick and so anywhere that's not there.
JENNY BROCKIE: Were you given an explanation as to why you could have been bitten by ticks before and not had a reaction, but this time you did?
VIVIANNE: I think, to me it's quite random. It's a mysterious thing, ticks are very strange and mysterious creatures, yeah.
JENNY BROCKIE: Ella, you're 16, you had anaphylactic reaction at a Halloween party last year. What caused the reaction?
ELLA: Um, well, earlier that night I'd gotten ready with my friends at a friend's house and we'd had some food before while we were getting ready and I had four chips and her mum had turned steak beforehand and accidentally turned the chips with the same tongs and three hours later at the party, my lips were kind of swollen and I went into the bathroom and just looked in the mirror and I'm like oh, oh, gosh I think I'm having an anaphylactic reaction.
JENNY BROCKIE: Had you had that before?
ELLA: I'd had a mild one earlier.
JENNY BROCKIE: To meat?
ELLA: To meat, yes. Because it used to be just hives but gradually it got worse and I became more sensitive.
JENNY BROCKIE: So what happened to you this night? Did you have an Epi pen to use?
ELLA: Yeah, I had an Epi pen with me.
JENNY BROCKIE: Did you use it?
JENNY BROCKIE: Why didn't you use it?
ELLA: I don't, I don't know I guess I kind of thought that I was going to be alright and that I'd make it to the hospital in time and I didn't really, I hate needles. Like needles terrify me so it was kind of also the fact of using a needle wasn't very appealing to me, I guess, but yeah.
JENNY BROCKIE: What other foods and products are you allergic to apart from red meat. Is it red meat or all meat?
ELLA: It’s red meat and pork, yeah.
JENNY BROCKIE: It’s red meat?
ELLA: But I’m also allergic to all mammal products. So that mean that I can't have dairy products, goat milk, cheese milk, but I think having the allergy it's frustrating and it's hard.
JENNY BROCKIE: Shelley, you're Ella's mum, how long has she had these allergies?
SHELLEY: Around the age of three to four I knew that there were significant problems and we went from doctor to doctor to specialist to specialist and the most hopeful advice we got at that age was to keep a food diary. By the reactions seemed so random. So on one day it might be to pork, on another day it might be to ice cream and so on and so on and so on. And then we ended up seeing a wonderful GP in Manly that suggested that her anaphylaxis trip to hospital perhaps might have that link with the red meat allergy that had been recently discovered and written about in journals by the Professor so he recommended that we go and see her.
JENNY BROCKIE: And what were you told caused that red meat allergy?
SHELLEY: Tick bite. So she went to a preschool in Terrey Hills on the Northern Beaches and she used to get bitten by ticks there a lot and the last day she spent there I stopped counting at sixty, so significant, yeah, significant tick issues.
JENNY BROCKIE: And so a direct link was drawn?
SHELLEY: No, not immediately. It took a long time to, a long time before, yeah, tens of thousands of dollars and visits.
JENNY BROCKIE: Sheryl, you're a clinical immunologist and an allergist, is there a name for Ella's allergy?
DR SHERYL: Well there are about over 1,000 people in the northern part of Sydney who suffer from the mammalian meat allergy after tick bite.
JENNY BROCKIE: Now you discovered this connection, is that right?
DR SHERYL: That's correct.
JENNY BROCKIE: How did you discover that connection?
DR SHERYL: One of the tricky parts of the mammalian meat allergy is that it's two to ten hours after people consume the meat and so the connection had been difficult for people to make. But it started becoming more common after around 2003 and I'd seen probably in excess of fifty people then and it impressed me that everybody had been bitten by a tick who had this.
JENNY BROCKIE: So, this obviously doesn't happen to everybody?
DR SHERYL: No.
JENNY BROCKIE: Who gets bit by a tick but how soon after people are bitten by ticks does this allergy show up?
DR SHERYL: Usually it takes around a month, sometimes it's much longer.
JENNY BROCKIE: Craig, you've been a gardener around the Northern Beaches of Sydney for 27 years. Now that's an area notorious for ticks. When were you bitten by a tick?
CRAIG: I was bitten probably a couple of weeks ago. I usually find them crawling on me at first because I'm quite sensitive to them, I mean I've been bitten over those 27 years even as a child I think, but probably about …
JENNY BROCKIE: How many times would you have been bitten do you think?
CRAIG: Oh, it's hard to say because you might get a paralyses tick which is quite large and singular on you, whereas you might walk through a swathe of grass ticks which are the nymph developmental stage of, you know, the paralyses sick. So you fight have forty or fifty crawling on your legs, which I've had before.
JENNY BROCKIE: Do you get sick?
CRAIG: I've been sick a few times. I've had tick typhus a couple of times. The first time was quite acute and had really bad sort of fevers and cold sweats, headaches, sensitive to light, and the only thing that sorts of drew me to it was it didn't go, it was just persistent and I thought oh, this is the worst, you know, flu I've ever had. So I just went down to the GP and he said well, let's get you on to the antibiotic which was Doxycycline which is an anti-malarial and …
JENNY BROCKIE: How long did you take that for?
CRAIG: Ten days the course is.
JENNY BROCKIE: And afterwards?
JENNY BROCKIE: Miles, you're an infectious disease specialist. What illnesses do we know tick bites can cause in Australia?
PROFESSOR MILES: On the east coast the commonest one is what we used to called Queensland tick typhus but it's now generally called Australian spotted fever because we have subsequently recognised cases Sydney, Victoria. There's also a new Rickettsia which the chap sitting next to me was involved in the discovery of called Flinders Island Spotted Fever which is also a spotted fever group Rickettsia, and there are…
JENNY BROCKIE: What's Rickettsia?
PROFESSOR MILES: Rickettsia are tick transmitted organisms.
JENNY BROCKIE: Right, so there are a number of illnesses we know and everyone agrees are caused by ticks?
PROFESSOR MILES: That's correct, and we also know that ticks are full of lots of other organisms. What we don't know is whether they cause disease in humans, so that link hasn't been made.
JENNY BROCKIE: And when we talk about ticks, how many different types of ticks are there and can they all cause these problems?
PROFESSOR MILES: Well, there are dozens of ticks in Australia, many of them imported and not native to Australia, but very few of them actually bite humans.
JENNY BROCKIE: Alright, Sheryl, I think at this point everyone is going to want to know what do you do if you find a tick lodged on your body, what's the best thing to do?
DR SHERYL: So the first things is if you live in a tick endemic area, don't scratch anything you can't see because it could be a tick. If you have a tick, don't disturb the tick.
JENNY BROCKIE: Why?
DR SHERYL: Because she will squirt allergen into you at that point. You are …
JENNY BROCKIE: She?
DR SHERYL: She, she is trying to make her two and a half to 3,000 babies and you are getting in the way if you disturb her.
JENNY BROCKIE: So don't grab the tweezers?
DR SHERYL: Don't disturb the tick, don't use anything that's going to compress the tick, basically kill the tick where it is.
JENNY BROCKIE: How?
DR SHERYL: So if it's a small tick, a larval tick or a nymph stage tick, use Lyclear. So just drop the cream onto the top, don't rub it in.
JENNY BROCKIE: Use what?
DR SHERYL: Lyclear, it's a cream used for scabies.
JENNY BROCKIE: If you haven't got your Lyclear what can you do?
DR SHERYL: Leave the tick alone.
JENNY BROCKIE: So go to the hospital or go to the doctor?
DR SHERYL: That's right, that's right, so attend your general practice or go to the Emergency Department.
JENNY BROCKIE: And then if you've put the Lyclear on the tick what do you do then?
DR SHERYL: Leave it for one to three hours, the tick will then be dead and then you can safely scrape it off, so shave it or whatever. So with an adult tick what we like you to do is to get about half a centimetre above and hit it with a freezing agent because that kills it instantly and she can't squirt then. Whatever you do, don't use household tweezers, they're too thick.
JENNY BROCKIE: What is a freezing agent?
DR SHERYL: Freezing agents are ether containing, they're used for skin tags and for wart removal. But if you do have a tick, then don't touch it, kill it, don't squeeze it and it all should be well.
JENNY BROCKIE: Sam Stosur, you're Australia's top women's tennis player but you became very ill in 2007 and your game suffered as a result. Let's have a look.
COMMENTATOR: Stosur breaking in the very first game to take a 3-1 lead and then falling in a heap, the 29th seed who has been sidelined for almost two months with the measles, collapsing in straight sets, 6-3 6-2.
JENNY BROCKIE: You didn't have measles. What did you have?
SAM: No, Lyme disease, but I didn't know at that point so, yeah, I got really ill at Wimbledon early in the year, so in June, and thought I could go back to The States and play and as it turned out I could. I knew I wasn't going to win that match after about three games.
JENNY BROCKIE: Now Lyme disease is caused by?
SAM: G5, yes.
JENNY BROCKIE: How long did it take for you to get the right diagnosis, you were overseas at the time?
SAM: So went over there, played and by the end of that week I, um, ended up with meningitis and in hospital and then I ended up staying in the States for another couple of months till they diagnoses me yeah, with Lyme.
JENNY BROCKIE: And why was it so hard to get the diagnosis?
SAM: Well I think because, I mean I was in three different continents so I started in England, in the UK, and then came back to Australia and it's not recognised here so that was never even on the radar and yeah, as it turns out it was a very good decision to go back to America and try and play.
JENNY BROCKIE: Where do you think you got it?
SAM: I think I got it in Paris, I just, I don't know, but you can get bitten and not feel anything for up to ten months so I'm kind of guessing at that.
JENNY BROCKIE: And in the end, you know, once it was diagnosed in America, was there any doubt about what it was?
SAM: No, the infectious disease specialist that I went and saw, once he put all my symptoms together, what I'd felt, how long, once I had the meningitis, that was all kind of, and then all the tests, blood tests and everything that I had done, once he put all that together he was pretty adamant that I definitely had Lyme and that's what he was going to treat me for.
JENNY BROCKIE: So the test results came back showing positive to Lyme disease?
SAM: There's no test to say you've actually got Lyme but putting whatever all these other things together and all my symptoms, that's what he'd come up with.
JENNY BROCKIE: And were you training during all this period, were you still trying to play?
SAM: Yeah, I played in New York and I'd just started with my coach actually so he's like hey, you've just got to get fit, got to get you back. So that's what we were doing and then I got really sick one night and had lots of chest pains and went to hospital. They couldn't tell me what was wrong and then a few days later I flew back to where I base myself in Florida and had pounding headache and the first hospital I went to told me I had sinusitis, which I was convinced I did not have. But went home and about twenty four hours later went back to hospital and they did a spinal tap and that's where they said that I had viral meningitis and then from there then we could kind of, once I was over that then that's when I started see the specialist.
JENNY BROCKIE: Miles, what is Lyme disease?
PROFESSOR MILES: Well Lyme disease is an infection by a Borrelia burgdorferi group, and the transmission is by a tick bite and this is endemic in North America, Europe, Asia and probably cases down as far as Thailand but that's as far as it's been proven to extend.
JENNY BROCKIE: And what are the symptoms?
PROFESSOR MILES: The symptoms are in several stages depending on when you're diagnosed but it's generally broken down into early and late Lyme disease, and if the diagnosis isn't made that at that stage the bug can spread to other organs, including the lining of the brain, meninges, the heart, the nerves particularly in the head region, cranial neuritis we call it, and then to joints and it can even infect the brain itself which is called encephalitis and that's the hardest to treat form of Lyme disease.
JENNY BROCKIE: Have you ever diagnosed someone in Australia with Lyme disease acquired here?
PROFESSOR MILES: Not acquired here, no. I've diagnosed a number of cases acquired overseas.
JENNY BROCKIE: So do you think Lyme disease exists here?
PROFESSOR MILES: Well I don't have to think because medicine actually operates on scientific principles so the question is what is the data, and as I say, multiple investigators have looked into this question looking for the organism in ticks, what we call reservoir animals in human beings, and there's been no definitive proof of them in Australia. In all the other countries that we've discussed it's very easy to find the organism. So if you have endemic Lyme disease you can find the organism anywhere you look, in the ticks, in the animals or the human beings.
JENNY BROCKIE: But not here?
PROFESSOR MILES: Not here.
JENNY BROCKIE: Jesse, you were on a beach on the Central Coast a couple of years ago when something unusual happened. What happened?
JESSE: Absolutely, I was on Central Coast, we were just hanging out with family, we'd walked past a marsh and some bushland and stuff to get to some sand dunes and my wife actually went back to the car because she didn't enjoy the bugs that were present. There were sand flies and there was little bugs crawling on our feet and stuff like that and we'd, we'd sort of shook it off, had a bit of a play and then we went back to the cars and stuff like that, yeah, so.
JENNY BROCKIE: And did you notice anything had bitten you?
JESSE: Not at the time. They were very small and they were creepy crawly and, yeah we just brushed them off and went on our merry way.
JENNY BROCKIE: And what happened about a week after that?
JESSE: So I took a flight to New Zealand and as soon as I got to New Zealand I was starting to get sick. I got very, very ill, spent most of my ten days in the bottom of the shower, fevers, chills, fatigue, all sorts of things like that. I went and saw New Zealand doctors, I got tested for all sorts of things and they couldn't find anything that was, that was causing the issue and yet I was, I was just chronically sick, it was nasty.
JENNY BROCKIE: How long did those symptoms last?
JESSE: So they started subsiding after about ten, ten days and then when I got back to Australia like I could never actually really shake it. I started having even more and more symptoms that would start accumulating, I'd start having headaches, I'd have fatigue, I'd have muscle aches, pains, to the point where I could barely get out of bed. I was also like having stomach and digestion problems, chronic diarrhea, all sorts of things that were just not normal and I started seeing doctors.
JENNY BROCKIE: How many doctors?
JESSE: I saw somewhere between sixteen and nineteen doctors that just kept telling me there's nothing wrong with you, or you need to take probiotics or you know, your immune system's just low at the moment or you need to see a psychiatrist was the last one that I had that I started getting quite upset with him and, yeah.
JENNY BROCKIE: How long had it been going on at this point?
JESSE: So I saw doctors for about nine months.
JENNY BROCKIE: What did you do eventually?
JESSE: So eventually I was told by one doctor, I think you need to go and see a chronic fatigue specialist and then the chronic fatigue doctor said I don't think you've got chronic fatigue, I think you've got a Lyme like illness.
JENNY BROCKIE: A Lyme like illness or Lyme disease?
JESSE: He said a Lyme like illness.
JENNY BROCKIE: Chanel, you're 17. When were you told by a GP here in Australia that you had Lyme disease?
CHANEL: It was a year or two ago?
CATE: Yeah, it was 2013.
JENNY BROCKIE: And what were your symptoms?
CHANEL: I was fatigued, I had lots of headaches, stomach pains, muscle pain.
JENNY BROCKIE: And how long had that been going on?
CHANEL: About five years.
JENNY BROCKIE: Five years you'd had those symptoms and had you been to many doctors about them?
JENNY BROCKIE: Cate, you're Chanel's mum, when did the idea of Lyme disease come into the picture here with Chanel?
CATE: Yeah, well it was about six years after she first started getting her symptoms. We were fishing around for about three years trying to get a diagnosis with no luck on the Sunshine Coast and we weren't getting anywhere with that. So we went to see a holistic GP in Sydney.
JENNY BROCKIE: So when did Lyme disease get raised.
CATE: He did ask if she had ever been bitten by a tick so I guess at that stage he probably had an idea that maybe that could have been a reason why.
JENNY BROCKIE: So when the doctor said that he thought she had Lyme disease, this was before any testing or anything like that?
CATE: Yeah, it was a clinical examination and he just suspected it.
JENNY BROCKIE: What did doctors say to you, because a lot of doctors didn't believe you, did they?
CATE: No, they don't, no. I guess with so many different symptoms they would just sort of come to the conclusion that, that she was making it up or that I was making it up, or we were both making it up because we wanted to, you know, no one wants this, no one wants to be sick with this. It's, it's, debilitating and it's horrible so I wouldn't wish it on anyone. So why they think we're making it up I have no idea.
JENNY BROCKIE: Why are you so convinced though that she has Lyme disease and not something else when the science is saying Lyme disease doesn't exist here?
CATE: Yeah, we had been everywhere, we had been to every specialist so when we finally got a diagnosis it was, it was sort of a relief to think that we could start treating her.
JENNY BROCKIE: Can I get a reaction from some of the doctors here?
PROFESSOR STEPHEN: Well, it's very interesting to hear that and I'm sorry your daughter's been sick for so long, but it's probably not Lyme disease, to be quite honest, unless she's travelled overseas to a Lyme endemic area.
CATE: Call it what you want, it's a bacteria that's in her system, we don't call it Lyme.
PROFESSOR STEPHEN: Well there are things in ticks that can be make people sick and certainly Rickettsia disease which we discussed earlier, they can a long post infection sequeli involving fatigue and strange symptoms of pain, headache, muscle pains and things like that. So that is recognised. But there may be in fact be other illnesses that have not yet been diagnosed that are associated with ticks. But we're saying you almost certainly haven't got Lyme disease because all the studies that have been done, there's now been four large studies done over the last twenty years looking at many, many ticks in Australia, thousands of ticks, and none of them have found Lyme disease bacteria in the ticks.
JENNY BROCKIE: You've had doctors tell you you've got Lyme disease, right…here?
JESSE: I've had doctors tell me that have a Lyme like disease and I agree completely. I think that there is a disease that is out there that is Lyme like, it has similar symptoms to Lyme, it has similar features to Lyme, and I think some of the co-infections are probably there as well.
JENNY BROCKIE: Okay, so there's agreement then because this is a ferocious debate around Lyme disease?
PROFESSOR MILES: Using the term Lyme like actually has inhibited the studies because it's made people focus on…
JENNY BROCKIE: Focus on that?
PROFESSOR MILES: The organism which we know is not present in Australia. There may be other organisms but we haven't been looking at them because everybody is talking about Lyme like or Lyme disease. It's taking us down a side track.
JENNY BROCKIE: Why are people, if as you say the science is, you know, suggesting that the Lyme disease that we're seeing in the rest of the world doesn't exist here, why are people in Australia being told by Australian GPs they have Lyme disease?
PROFESSOR MILES: Well firstly they're not specialists in infectious diseases so they're extrapolating from an overseas experience and assuming it's the same thing, and there's a whole series of deductions which haven't been proven along the way. So that's why we have to address this with an open mind, yes, there's illness in the community, we don't know much about it, we need to study it in a scientific manner.
JENNY BROCKIE: Okay, can I get a reaction from you?
CATE: Can I just say I think the scientists job to start with to do that and as a mother of a very sick child for a very long amount of time, I just want someone to make her better.
JENNY BROCKIE: Yes, Jesse?
JESSE: I don't think anybody really cares what we call it. Like you can call it whatever you want but you need to study it and you need to hurry up about it. Because I mean, my dog has technology to actually protect from ticks but I don't.
JENNY BROCKIE: Okay, Gull, you're a GP on the New South Wales Mid North Coast who has in the past diagnosed Australians with Lyme disease on the basis of tick bites here. Do you think it exists in Australia?
DR GULL: No, I don't think Lyme disease exists in Australia, for the reasons that Miles mentions. But I have, I see a lot of people with similar stories to the stories we're hearing now and there are many people who have got illnesses that are comparable to what is known in United States anyway as chronic Lyme disease but some, but just slightly taking issue with what Miles said about everybody knowing what Lyme disease is.
In The States there's a kind of two camps. There is chronic Lyme disease, there's not chronic Lyme disease, but the sort of stories that we're talking about are people having been sick for well, months to years, perhaps even a decade or longer, and doctors who work like me, perhaps chronic fatigue physicians or integrative doctors or functional medicine doctors, however we call ourselves, we often see diseases that don't have a conventional medical diagnosis and are often quite complicated and what, the way that I got into "Lyme" or Lyme like disease was trying to tease out what's going on for these people and someone actually came to me and said they've been diagnosed with Lyme disease.
JENNY BROCKIE: So what do you think then of doctors diagnosing people with Lyme disease in Australia?
DR GULL: Well, I think it's really, it's kind of, it's a misnomer, as Miles said, I agree, I don't think we should use that term. We know that there's things, there are organisms that get into us that sometimes make us sick right at the beginning and that's really relatively easy to pick up, but there are also, we know there are other organisms that get into us that cause infections over the long term and if we in Australia as health professionals use the term Lyme disease, then there are others reasonably would say no, it's not Lyme disease, it can't be because there isn't Lyme disease in Australia and it diverts attention from the sick person, that's the big problem.
JENNY BROCKIE: Yes Stephen?
PROFESSOR STEPHEN: Yes, look, Gull's correct, there are a lot of infections that after the patient has an acute illness and thinks they've got over it, it actually drags on and we see it in lots of, lots of illnesses. So it's quite a common phenomenon and it's not related specifically to any one type of infection, it's to do with the patient's immune system, it's probably their immune system reacting in an aberrant way to the type of infection, whatever that infection was that they got from the tick bite.
JENNY BROCKIE: How did your doctor confirm your diagnosis, Jesse?
JESSE: So I had a test done through IGeneX in America after my mum convinced me to do it because I was cash strapped after battling the, this whatever I had for nine or twelve months by that time.
JENNY BROCKIE: How much did the test cost?
JESSE: It was two and a half thousand dollars.
JENNY BROCKIE: And what did the test show?
JESSE: So it showed that I was, I was actually shocked by it. It said it was positive for something called Babesia, for another one called HME and then Duncani as well.
JENNY BROCKIE: And what did that mean, what did that effectively mean in terms of what you had?
JESSE: It effectively meant I had three active co-infections.
JENNY BROCKIE: And they were Lyme related?
JESSE: They're Lyme related, they're co-infections to Lyme disease.
JENNY BROCKIE: So was the conclusion that your doctor reached that you had Lyme disease?
JESSE: Well, he said Lyme like illness and we're treating it as a Lyme like illness and the…
JENNY BROCKIE: So that means treating it like Lyme disease?
JESSE: Yes, I would say, yeah.
DR GULL: Do you want me to clarify that? I'm in a position to do so having…
JENNY BROCKIE: Sure.
DR GULL: Worked in that area a bit.
JENNY BROCKIE: Well you can't clarify his case because you're not his doctor.
DR GULL: No, but those sort of results, so those three things that were positive on the test results were three different infectious organisms, or two because Babesia Duncani which is one organism and then it's not that they're Lyme, they're not related to Lyme, they're also organisms that can be carried by ticks and then they can also cause disease in human beings, and they can be tested for, and IGeneX does some testing for it and then it's up to the doctor to make an interpretation of those results and the symptoms of the patient and decide is there a match and then, based on the clinical decision and the patient's preference, work out a treatment plan.
JENNY BROCKIE: Okay Chanel, where were you tested, how were you tested?
CHANEL: I think it was the same.
CATE: Yeah, her first blood test was sent to Australian Biologics in Sydney and they came back with a positive for Borreliosis.
JENNY BROCKIE: Which is?
CATE: Which is the bacteria that is found in similar Lyme like disease and also her bloods were also sent to IGeneX as well.
JENNY BROCKIE: And how much did that cost?
CATE: All up, over 3,000, $4,000.
JENNY BROCKIE: Stephen, what do you think of these tests?
PROFESSOR STEPHEN: Well most of the tests are looking for antibodies in the patient's blood, antibodies that have been stimulated by the patient's immune system. So we've all got antibodies in our blood to all the microbes we've been exposed to in the last six months or so. Now just because I suddenly feel unwell and he suddenly finds an antibody to something in my blood, it doesn't mean they're connected.
JENNY BROCKIE: So you're saying you can't draw firm conclusions from those tests?
PROFESSOR STEPHEN: Yes. If you want to do it properly looking at antibodies, you've got to show a negative to positive change over time and that's called a sero conversion, or you've got to show a change in antibody level from low to high over a period of days or weeks. And they are the only two ways you can be sure that an antibody test is connected with the patient's illness. Would you prefer a wrong diagnosis to no diagnosis? That's really the issue.
NICOLE: But if that diagnosis leaves them, or the patient like my husband, on a path of treatment which is the same as Lyme disease and getting successful results, does it matter what you call it if the same method is achieving a positive result?
PROFESSOR STEPHEN: No, in that patient, no, it doesn't. The object is to get the patient better. But often patients are treated for undiagnosed illnesses by doctors and they get better anyway, and sometimes patients get better even without going to the doctor. You know, the medicine, if you take it, you'll get better in seven days and if you don't take it you'll get better in a week.
JENNY BROCKIE: Jesse, why did you choose an American lab to get tested?
JESSE: Because I had heard that the testing in Australia wasn’t as strong as the testing overseas, that the laboratories in Australia weren’t as good as the ones that were already dealing with these same factors. Yeah I think that we need a rapid test.
JENNY BROCKIE: Stephen?
PROFESSOR STEPHEN: Yes, well I can't disagree that we need better testing, there's no question about that but it just can't happen with the drop of a hat. There has to be money made available to do it and that's one of the biggest weaknesses, we don't have enough money to do it. So yes, you're right, and I understand why you felt the need to send to another laboratory, but you probably got the wrong result from that American laboratory.
JESSE: Don't think I did.
PROFESSOR STEPHEN: It's up to you.
JENNY BROCKIE: But do you think it could be something other than Lyme?
JESSE: I, I don't know, but I do know that, you know, the antibiotics have helped and they've helped drastically. Like when I would stop taking the antibiotics because I obviously don't want to be on antibiotics for the rest of my life but every time I stopped taking the antibiotics the symptoms just like revert straight back to where they were. Even the rash on my feet comes back and it's the Lyme rash, I mean it's the rash that everybody…
JENNY BROCKIE: I think we've got a picture of rash here.
JESSE: Yeah, so that's one. And there's another one, you can see the ring on my foot there, so it's …
JENNY BROCKIE: So that's what's called the bull’s eye rash I think that's associated with Lyme disease, is that right?
PROFESSOR MILES: Many rashes look like that, it's not specific to Erythema conican. Can I ask you how long you've been taking your antibiotics for?
JESSE: I've been taking them for about nine to twelve months now.
PROFESSOR MILES: How many antibiotics are you taking?
JESSE: Three different varieties.
JENNY BROCKIE: Okay, how long was Chanel on antibiotics for?
CATE: She was on them for just over two years.
JENNY BROCKIE: This was a doctor prescribing antibiotics for two years?
JENNY BROCKIE: Did they work?
CATE: We did see an immediate progress in her treatment but unfortunately Chanel's situation was a bit different in the fact that her body wasn't absorbing them so after time she just plateaued and things just sort of didn't get much better. So then that's when they do the IVs, they put the…
JENNY BROCKIE: Intravenous antibiotics?
CATE: Yes, intravenous antibiotics into the blood stream which has a different effect, I imagine.
JENNY BROCKIE: Did you have intravenous antibiotics?
JESSE: No, I didn't, no.
JENNY BROCKIE: And Sam you did?
SAM: Yeah, I did two weeks of oral while they were still waiting for test results and as soon as they came back and he put all the bits together, then I went on four weeks of IV and then another two weeks of oral afterwards.
JENNY BROCKIE: So that's more the standard treatment for Lyme disease overseas?
PROFESSOR MILES: I'm not talking about Sam's treatment but these very prolonged therapy with multiple antibiotics, firstly as Stephen's already mentioned there's been a number of trials to show that that actually doesn't change outcome of the patient. The second thing is they are potentially very toxic and there have been deaths associated with unrequired intravenous therapy.
PROFESSOR STEPHEN: And the other issue that everyone needs to be aware of is the rising antibiotic resistance of bacteria. If people are taking antibiotics for such a long time their bacteria are going to become resistant to those antibiotics after a relatively short time.
JENNY BROCKIE: Cate, you say that Chanel was taking up to two hundred pills a week?
JENNY BROCKIE: How did you get her to take that many pills?
CATE: In the beginning it was very difficult and she would vomit a lot of them back up again but over the time she just became used to it and it started to make her feel a bit better so she knew that.
JENNY BROCKIE: Jesse, you're currently taking a high dose of oral antibiotics still?
JESSE: Yeah, look I'm still taking it.
JENNY BROCKIE: Do you worry about taking them for that long?
JESSE: Yeah I do, I think it's, I mean it's obviously got to cause damage, it's got to cause toxicity. But I mean what alternative do I have? If you give me an alternative I'm happy to take it.
JENNY BROCKIE: Miles, what do you say to Jesse who says give me a better option?
PROFESSOR MILES: I think you have to be honest with patients. The first principle of medicine is Nonmaleficence, that means first do no harm. So don't give people false hope, don't propose unapproved therapy which are potentially toxic. You've got to being honest and say I acknowledge your illness, I don't know what it is, nobody knows what it is at the moment. The symptoms that you have have some similarities between a number of other syndromes we have, chronic fatigue syndrome, fibromyalgia, we know there are some treatments he which help with the symptoms with those so I would proceed to treat them along those lines.
JENNY BROCKIE: Cate, earlier this year you took Chanel to Malaysia twice for what's called hypothermia treatment and blood ozone treatment. What does that involve?
CATE: Yeah, alright, so basically the machine heats the body up to a very high temperature. That's the only thing that can kill the bacteria that's in the system.
JENNY BROCKIE: How high a temperature is this?
CATE: 42 degrees.
JENNY BROCKIE: Who recommended this treatment?
CATE: It's recommended by a lot of people who have already been there and done it and have found to have some amazing effects and successful treatments and have gone back to their normal selves again after the bodies is killed of the bacteria and it also is in combination with IV antibiotics at the time for about a week and a half.
JENNY BROCKIE: What convinced you to do it? What made you do it?
CATE: We were at the end of our, end of our line really with Chanel. She was fading away, she wasn't eating, she was probably on death's door so I had to do something aggressive and we organised a local fund raiser to raise some funds to go over to Malaysia for two treatments.
JENNY BROCKIE: What was it like for you Chanel, that treatment?
CHANEL: Well the first time, afterwards it was, it was horrible. I started getting the symptoms back pretty aggressively and spent a week there with nutrients and a couple of weeks later I was starting to feel better. And then the second one, which was that one, I felt better straight away and…
JENNY BROCKIE: How much did that treatment cost?
CATE: The treatment cost $5,000. Well actually no, it was $4,000 for the actual treatment but we did some, but we incorporated some blood ozone treatment as well while we were over there.
JENNY BROCKIE: And what's blood ozone treatment?
CATE: It's a purification of the blood, disease blood. So they take, it's like a dialysis, they take blood out, purify it, there's probably scientific words to describe it, and basically put it back into the body.
JENNY BROCKIE: Miles, what do you think of this sort of treatment?
PROFESSOR MILES: Unproven experimental therapy, needs further study.
CATE: Meanwhile people are dying.
CATE: What else do you do with a sick child? And look at her now, she turned around 360 degrees after having the second treatment. She was, yeah, I recommend it to anyone.
PROFESSOR MILES: The reason why we do controlled clinical trials with a placebo arm is that many people get better no matter what you do. We can't prove that her intervention actually resulted in the outcome.
CATE: I can.
PROFESSOR MILES: And you can only prove that by scientific study in a proper manner.
CATE: She's sitting here right next to me and she's as healthy as she was before she was, before she got this disease. That's my evidence and that's all I need.
JENNY BROCKIE: This is what, this is what this argument gets down to over and over again, isn't it? It's the idea that, you know, people's experience is one thing and the science is, is something, you know, that everybody is debating and discussing. But people are saying well this is my individual experience. I mean what do we end up relying on, individual experience or do we rely on science?
PROFESSOR MILES: I think the audience also needs to appreciate that the doctors are also constrained. If I prescribe an unapproved therapy to somebody and they have a fatal reaction to that, the licensing authorities will firstly pull my licence. Secondly my insurance company will say well, your policy's null and void because you've not followed a recognised therapy. So you know, we also have limitations on what we can offer patients because mainstream medicine has to use approved therapies, proven therapies. I mean we'd all like to have a little chemistry workshop in the back and create magic cures but we are constrained by the licensing authorities as well.
JENNY BROCKIE: Cate, did you think about the risk associated with what you did?
CATE: Absolutely, but I knew what the alternative was.
JENNY BROCKIE: And what did you think the alternative was?
CATE: She wouldn't have been with us for much longer.
JENNY BROCKIE: What, you thought she was going to die?
CATE: Of course she was.
JENNY BROCKIE: Why did you think she was going to die?
CATE: She wasn't eating, she was fading away to nothing, she was bed ridden. The child hasn't been well enough to go to school for over three years.
JENNY BROCKIE: Did you think you were going to die Chanel?
CHANEL: For me the mental side of it, the depression, I probably would have but I would have done it myself.
JESSE: What we need is action and we don't have action. All we've got is words of people saying you know, we're doing tests and studies and this. I mean the people that are sick need the action, they don't need the words.
PROFESSOR MILES: But first we must do no harm.
JESSE: Excellent, great, so if I die on your watch is that doing no harm?
JENNY BROCKIE: But can you also understand why, you know, doctors are saying that they want to have enough evidence to be sure that what they are doing is no harm?
JESSE: Absolutely, I'm the first to person to say we need a rapid test that we can, you know, give you in a GP's office and say yes, you have this, no, you don't have this.
PROFESSOR STEPHEN: Well there just has to be more resources put into it, it's as simple as that. Because there are laboratories around Australia that will do that and can do that, but they haven't the financial resources to do it. It's as simple as that.
JENNY BROCKIE: Okay, Sam, we've got some footage here, I didn't just want to show you collapsing playing tennis, we've got some footage here are you winning the US Open in to 2011 which I'm sure you'll love to see, it's a good one. This was about four years after your Lyme diagnosis.
JENNY BROCKIE: So that was four years later. How long did it take for you to get to a point where you were actually feeling more like yourself again?
SAM: A good few months and then I was in the States doing all my treatment so eventually when the doctors told me it was okay for me to come home, I came home and started really slowly with my training again which was about a twenty minute walk. So it was about ten months from when I first really noticed something to then when I was back competing again.
JENNY BROCKIE: What's it like for you hearing this discussion about whether or not Lyme disease exists in Australia, or a Lyme like illness and about some of the treatments that people are having that aren't the standard treatment that you had?
SAM: I think I'm very lucky, I think I'm very lucky that I ended up going back to America. Whether or not, you know, obviously they acknowledge that there is Lyme here but you contract it overseas so that could have been my scenario, but I just feel like everything is a little bit more progressive away from Australia as far as that goes.
JENNY BROCKIE: How are you now?
SAM: I'm great.
JENNY BROCKIE: Do most people make a full recovery from Lyme disease if they have it overseas?
PROFESSOR MILES: Yes, the overwhelming majority.
DR CHARLOTTE: Little is actually known about what Australian ticks have inside them in regards to their pathogen potential. So we are going out into the bush to find ticks to see if we can identify potential pathogens that could be in these ticks.
Let's spray ourselves first so we don't actually get bitten by any ticks. So when we go out looking for ticks, we are looking for them along dirt tracks and paths. So we can often use a flag, a piece of cloth that we can put across the vegetation and that way we can also find the ticks.
We found a male as well. Here we go. We have got the nimph, a female and a male. When we are out in the bush and we come across a tick that we want to collect, then we put it into a tube of 70% ethanol and that kills the tick and then we bring it back to the lab so we can identify using the morph logical features of the tick.
Then we need to actually break up the tick and by doing that, we actually freeze the tick. So it is really cold and it becomes very brittle. We then we add a ball bearing and then we Pulverise it into a tick powder. So that powder contains tick but it might provide blood from a previous host or any potential pathogens and then we go through a series of molecular techniques to amplify potential pathogens that could be in the tick. Ticks are known to cause illness in people all around the world and I wouldn't be surprised if we do find something that could be causing Australians that are bitten by ticks to become unwell.
JENNY BROCKIE: Charlotte, what have you found so far and how long will it be before you'll know a bit more about diseases ticks might be carrying?
DR CHARLOTTE: We have found five new bacterial species that are unique to Australian ticks. At the moment we don't know if they can be transmitted by ticks, let alone whether they can cause disease. And in those five new species we have found a species of Borrelia which is distantly related to any other Borrelia that is known. So we've talked about Borrelia tonight, we know Borrelia burgdorferi sensu lato is the group that causes Lyme disease. There's also two other groups of Borrelia, and the Borrelia that we identified, that was found in echidna ticks, so it's potentially a fourth group, so it's actually quite ground breaking fascinating research and findings that we've actually got a Borrelia that's actually unique to Australia.
JENNY BROCKIE: So does that mean that we could have a Lyme like illness in Australia potentially, because you've found that Borrelia, those different types of Borrelia?
DR CHARLOTTE: Well Lyme disease is associated with a specific group of Borrelia. Whether, and we don't know if this Borrelia can be transmitted by ticks that actually bite humans. We've found other bacteria in ticks that have been removed from humans, so at the moment we don't know if it can be transmitted or if it can cause disease.
JENNY BROCKIE: How much longer might it be before you know?
DR CHARLOTTE: I guess, you know, it's about, as Stephen and Miles have talked about, it's about funding, it's about getting those funds so that we can actually do the research to help people like you if you're bitten by ticks and you're unwell.
JENNY BROCKIE: Defining what we're dealing with here is really important because it essentially, you know, has ramifications for treatment and all kinds of things. But one of the questions that I wanted to ask in summing-up here is with so much emphasis on whether or not Lyme exists in Australia, is there a danger too of overlooking other potential diseases that people might have or that, you know, things that might be causing their symptoms because some doctors are quick to jump to a Lyme like illness is the explanation? Gull, do you think there's a danger there?
DR GULL: I think it's happened. I mean the answer is yes, there's a danger but like what I was trying to say before, let's stop talking about whether or not there's Lyme disease in Australia or not. Like we can leave that to the guys who are looking in ticks to find what bugs we've got in ticks in Australia. What we need to do as health professionals is help the people that come and see us who say I'm sick, can you help me? But we make sure that we use all of our skills and all of our experience to help the patient get better. That's the most important thing.
JENNY BROCKIE: Okay, we're going to have to leave it there. Thank you all so much for joining us tonight, been really good to talk to all of you. And that is all we have time for here but I'm sure you're going to want to keep talking about this on Twitter and on Facebook.