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UNCOVERING LYME DISEASE: THE HUNTER LINK

Medical research shows what can be considered as evidence of the illness in the Hunter Valley, stemming as far back as the early 1980’s.

Something that doesn’t sit well with sufferers fighting for recognition of their struggle.
What Correna Chenhall has survived, can only be described as horrific.

She lost five years of her life to Lyme Disease – after waking up one morning, paralysed.

“the pain was just indescribable – you can’t begin. You can’t begin – to imagine the pain.”

The mother of two says she contracted the disease from a tick bite in bushland opposite her home in the Lake Macquarie suburb of Dudley.

LYME PART TWO
Correna Chenhall

 

It’s a claim that’s becoming more prevalent across the Hunter, and goes against many doctor’s beliefs – that the disease does not exist within Australia.

That’s despite medical research from as far back as 1980 documenting that an illness referred to as ‘lyme arthritis’ was present in the Hunter Valley.

The article published in the Medical Journal of Australia, discusses how a 21 year old labourer from Branxton developed classic symptoms of Lyme disease after being bitten on the leg by an insect – and that by 1982, six cases of a rash linked to the illness had been identified in the region. And it’s knowledge like that, that has sufferers frustrated.

“there’s actually like lots of cases, like I have been contacted by people in Charlestown and Gillieston Heights who just don’t speak up because no-one believes you”

And it’s knowledge like that, that has sufferers frustrated.

NBN News has been made aware of almost 50 locals from across the Hunter who have been diagnosed with the disease.

Many, say their illness was set off by a tick bite received in the Awabakal Nature Reserve in Dudley and the nearby Glenrock State Conservation Reserve.

LYME PART TWO

Professor Tim Roberts from the University of Newcastle has been following the claims, and says research indicates Australians are contracting the disease here.

A group working here in Newcastle with prof richard barry in the 1990s was able to isolate and grow a borellia strain that was here

Exactly how many Australian’s suffer with the debilitating illness is unknown, because public health officials don’t collect statistics.

The Lyme Disease Association of Australia is taking matters into its own hands, collecting bi-annual statistics of those infected.

This map shows the number and location of confirmed cases.

 

LYME DISEASE MAP

While this displays where the individuals were bitten by a tick.

 

LYME DISEASE MAP2
Professor Roberts claims testing for Lyme Disease in Australia is flawed- and that if pathologists were to search for a gene shared by all forms of the Borrelia bacteria, rather than one present only in a specific, recognised strain- the cause would most likely be detected.

As a result, many tests conducted in Australia come back negative – when the patient really does have Lyme Disease.
However the Royal College of Pathologists of Australasia has warned some results acquired overseas cannot be relied on, claiming many of the laboratories are not accredited to diagnose the disease.

Professor Tim Roberts
Professor Tim Roberts

A stance almost comical for those living with the illness.

But researchers could be a step closer to uncovering what’s causing people to become ill here in Australia.

Just last week, findings published online revealed evidence of a relapsing fever Borrelia species in Australia.

While further investigation is needed – it’s generated hope across the country.

Tomorrow night – why the Federal Government won’t yet acknowledge the disease in Australia – and what it’s doing to learn more.

Read more here about what is Lyme disease and recognise the early and late stages of symptoms.

Read Professor Tim Robert’s article on Lyme Disease here 

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About Emma Murphy

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Emma Murphy is a reporter and producer based in Newcastle and started working with NBN News in 2009. Emma studied Journalism and Public Relations at the University of Newcastle.

6 comments

  1. avatar

    Thank you so much for highlighting this devastating disease. My three young girls and myself are all sufferers with this disease and it has been a long, hard expensive battle. As those you have interviewed have stated, the saddest part of this disease is to not have medical staff believe you. I have managed to find a wonderful doctor to assist with my treatment, but these doctors are hard to find in Australia and the medication required so expensive due to the medications not being registered on the PBS. My blood results tested in Australia came back negative, whilst my results from Igenenx in the US returned a positive – though this testing cost me approx. $5000 for my family. Let’s hope that with people such as yourself educating the community that we can fight for recognition of this disease and help all those suffering with Lyme and to help stop the suffering in the future. I can’t thank you enough.

  2. avatar

    Thank you so much for your story on Lyme Disease. I was bitten in Brisbane on the 2nd of September 2013 and have been sick ever since. I went to Germany in Oct-Nov last year for treatment but am still unwell. I had to have a PICC line put in to do IV antibiotics. Slowly I am seeing some improvements. We need to make the public aware of this insidious disease so they can be vigilant while enjoying the beautiful outdoors this country has to offer. I would not wish this disease upon anyone!
    Catherine

  3. avatar

    Thank you for airing the ongoing fight which faces alll who have been affected by this horrible disease called Lyme.My daughter Alannah was infected in Valentine when she was in year 6 (aged 11) at school,she is now 25 has married and lives in Sydney.She was diagnosed with rheumatoid arthritis and about five years ago multiple sclerosis. Her journey continues,finally recieving treatment for Cronic/Neurological Lyme Disease. She has suffered greatly,but continues to amaze me with her deremination to beat this monster. Jill Hall MP for Shortland,has been very supportive with bringing this issue to Parliment.Lets hope our leaders see the truth of this situation.Our loved ones have had enough.

  4. avatar
    Heather Vafidis

    Thank you for highlighting the plight of many thousands of sick people caught up in political argy bargy. My daughter was infected at age 7. She has endured not only this insidious disease but the arrogance, ridicule and mis diagnoses from the medical fraternity. She is 21 now and still struggling. Lost her childhood, her teen years, lost the ability to walk and talk at times, lost her dignity, lost the ability to ever work and receive a good income and most importantly lost faith in doctors, the government that is sworn to protect her and this country as a whole. So sad. Thank god she has a few brave doctors that are prepared to treat under threat of de registration and parents who support her. Some don’t get that luxury and end up dead. With this new research the government HAS to act before any more people die.

  5. avatar

    1987 inland from Kempsey NSW, north of the Hunter region, I got a bullseye rash from a paralysis tick bite and have had lyme-like symptoms from a tick borne disease. My test from German lab came back as borderline positive for Borrelia burgdorferi and symptoms consistent with the co-infections of Bartonella and Babesia. There has to be tick borne diseases being transmitted here! Thank you for your article

  6. avatar

    I was diagnosed positive in an Australian Laboratory! But still not allowed to be treated here. I managed to get a loan to go to Germany but that seems to make some of my issues worse. I am having more seizures, paralysis, and sometimes can’t speak. I will start in the IV’s after the school holidays as I am going to see my daughter. I was a single Mum and in the end she left to stay with her father as she thought I was going to die.

    My parents lived at Dudley and also Own their own ISLAND at PORT STEPHENS.