AUSSIES SEEK LYME TREATMENT IN GERMANY

German clinic offer “cure” for desperate Australians struck down with Lyme disease

• BY JULIE CROSS
• MANLY DAILY
• AUGUST 15, 2014 THE COURIER MAIL
• 

  Tick embedded in skin of leg. Credit: Ashley Prytherch, Royal Surrey County Hospital NHS Foundation Trust/Wellcome Awards
• 
  
• Australians suffering from a chronic life-threatening disease spread by ticks are flying to Germany and spending thousands of dollars for pioneering treatment.

Lyme disease is not recognised in Australia, making it difficult to get a proper diagnosis or treatment.

It often means that sufferers do not know they have the disease until it has reached a chronic stage.

If detected in the first few weeks, it can be treated with a short course of antibiotics, but if left patients need two years of antibiotics, which doctors here are reluctant to prescribe because of the controversial status of the disease.

Now hundreds of Australians are flocking to clinics in Germany where they are offering the latest treatment for the disease, with treatment starting at $21,000.

Avalon, pictured, is notorious for ticks in Australia, along with the whole of the northern beaches and other areas of Sydney’s coastline.

While Lyme disease is recognised in the US and across Europe, Australian medical chiefs say there is no evidence that ticks in Australia are carrying the borrelia bacteria that causes Lyme, claiming victims must have been bitten by ticks abroad.

However, many sufferers dispute this and until it is recognised in Australia, they say there will continue to be inadequate testing and a lack of awareness in the medical community and among the public.

Fréderika Montpetit from the St George Clinic in Germany said they had already treated 54 Australians this year and have 82 scheduled before the end of 2014, with new requests daily.

“We are happy to see that the media is getting involved, hopefully this will help the Lyme patients in their struggle for recognition of this horrible disease,” she said.

Pictured: An adult female tick.

Kate Wood who lives on the northern beaches, a well known hotspot for ticks, had treatment at the clinic last year.

She was just 17 and an elite runner competing internationally when she returned from a camping trip near Tamworth and felt something itchy on her back. 

She asked her friend to check. It was a tick.

Mrs Wood, now 33, was rushed to hospital to have it removed, but no-one tested her for Lyme disease or even mentioned it.

“HELP US” SAYS FAMILY WHO ALL HAVE LYME DISEASE

She then had a bad bout of flu. From then on it was one thing after another. Not long after she was diagnosed with glandular fever, went through periods of extreme fatigue, suffered heart palpitations, migraines and swollen joints.

Electron microscope images of a tick.

“I went from being extremely fit and healthy to feeling sick a lot of the time,” said Mrs Wood, a chiropractor, from Church Point.

Despite visits to numerous doctors no-one diagnosed her with Lyme disease.

Kate Wood, a chiropractor on the northern beaches, who sought treatment for Lyme disease in Germany.

Then, in 2012 she was bitten by another tick, this time near her home on the northern beaches. Soon after her hair started falling out, she suffered brain fog and then her eyesight started to deteriorate. At her worst she reckons she lost 90 per cent of her vision.

After visiting another doctor who said she had been noticing some “weird things happening to people on the northern beaches”, her bloods were sent to the US and came back positive for Lyme disease.

In July last year, Mrs Wood and her husband Nick, 37, went to Germany for treatment, which including flights and accommodation cost around $78,000.

The treatment involves the patient undergoing an anaesthetic and their body being heated to a temperature of 42 degrees celsius. The borellia bacteria dies at 41.5 degrees celsius.

She now feels 100 per cent healthy and is three months pregnant.

“I’ve not even had a cold since my treatment,” said Mrs Wood.

“But I feel I’ve been robbed of the best years of my life.”"

REFERENCED FROM WEBSITE:

http://m.couriermail.com.au/news/german-clinic-offer-cure-for-desperate-australians-struck-down-with-lyme-disease/story-e6freon6-1227025509879

AUSTRALIA'S SUNSHINE COAST COUPLE CRY OUT ON LYME

Coast couple highlight the plight of Lyme disease sufferers

Kristy Muir 

(8th March 2015 6:00 AM)

STRUGGLING: Kate Killeen has moved from Emerald to the Bli Bli home of her fiance’s father, Garry Bielefeld, after being financially crippled by the medical costs associated with treating Lyme disease.

THERE is a "silent epidemic" affecting people across the nation, Sunshine Coast medical scientist Kate Killeen says.

The Bli Bli woman and her partner, Dave Bielefeld, are two of those people suffering from the controversial Lyme disease.

Ms Killeen and Mr Bielefeld, a couple for more than five years, were diagnosed six months ago but had been suffering from Lyme disease symptoms for a few years.

The disease is not recognised by the Australian government and medical fraternity, but more and more cases across the nation are being diagnosed by US and European testing companies.

Ms Killeen has seen more than her fair share of doctors - an endocrinologist, gastroenterologist, general surgeon, two psychiatrists, three cardiologists, two neurologists and five GPs.

One GP even tried to admit Ms Killeen into a psych ward, convinced her symptoms were only in her head.

One GP even tried to admit Ms Killeen into a psych ward, convinced her symptoms were only in her head.

Finally the 30-year-old and her fiance found a Sydney-based doctor with expertise in Lyme disease and got specialised treatment to help improve their health.

Unfortunately they will never be 100% healthy again as there is no known cure for Lyme disease. The bacteria can lie dormant, making treatment very difficult. It is impossible to know if you have eradicated the bacteria.

As Ms Killeen is unable to fly or drive, the pair has their doctor's appointments via Skype each month.

"I can't fly as the noise could bring on a seizure," she said.

"Anything can cause a seizure - noise, fatigue, even eating. According to our doctor you can live with a low bacterial load, but you can have relapses. Just like cancer, you have relapses and you can go into remission. When you get (the bacteria) down to the 20% load, the immune system can maintain it and we are able to maintain a normal life."

In October 2012, while the couple was living in Emerald, they knew they needed to find out what was wrong with them.

"I had vertigo, dizziness, brain fog and fatigue," Ms Killeen said.

By July 2013, Ms Killeen was experiencing seizures and a range of other symptoms, including neurological issues and others affecting her nervous, heart, digestive and endocrine systems.

Mr Bielefeld's symptoms come in the form of joint and muscle pain and extreme fatigue.

Due to their failing health the couple was forced to relocate back to the Coast and move in with Mr Bielefeld's parents.

"We had to be closer to the hospital in case of a heart attack or stroke," Ms Killeen said. "People think it is all in your head - and actually, yes, it is, it is literally in your head and your joints, organs, tissues, nerves, muscles and cells.

"It causes a lot of isolation because you are not able to do things that other people can do and people have difficulty understanding why you can't go out to dinner, why you can't walk around the shops.

"All the little things people take for granted can become a massive challenge to a Lyme sufferer."

Since diagnosis, the pair has spent $16,000 on treatment. Before diagnosis they spent more than $20,000 on medical tests and doctors.

"The bills don't stop when you get sick," Mr Bielefeld said.

Ms Killeen added: "We are quite fortunate compared to other sufferers. My father pays all our medical bills and Dave's parents look after us.

"I hear of many sufferers who suffer severe financial difficulty and loss.""

REFERENCED FROM WEBSITE:

http://m.news-mail.com.au/news/Coast-couple-highlight-the-plight-of-Lyme-disease/2566906/

Australian Lyme Disease (Borrelia) Vetinary Investigations

LYME TESTS FAIL PATIENTS, EXPERT SAYS

28 May 2014 Published by The Echo

Contrary to popular belief, ticks in Australia can cause Lyme disease, according to at least one local expert.

Retired vet Dr John Curnow BVSc is calling on Australia’s health authorities to support the Karl Mcmanus Foundation’s research into tick-borne diseases in Australia, saying Lyme disease has been in Australia for decades.

The retired serologist, John Curnow, worked in conjunction with the CSIRO on the epidemiology of tick-borne diseases in NSW. This involved developing and using accurate blood tests for tick-borne diseases in cattle between 1982 and 1988.

In 1988 CSIRO published evidence that identified at least 14 species of Borrelia, including the one that causes Lyme disease, Borrelia burgdorferi, but the 1988 study of Australian patients did not test for any other Borrelia species but Lyme disease.

Even today Australian patients are being told they don’t have Borrelia infections because of a study that was done between 1988 and 1994.

‘In this study 4,372 patients with suspected Lyme disease were tested for a specific group of antibodies identified with the eastern USA variety of the Borrelia. The results of this ELISA test showed all but 1.8 per cent of the subjects to be negative for Lyme disease,’ Dr Curnow says.

‘But what about the other 13 species of Borrelia that were identified, but ignored – species for which there are still no specific tests?’

Dr Curnow says patients were told they had negative results for Borrelia infection, and were refused treatment despite relapsing fevers, and other common symptoms of tick-transmitted infections.

Based on this study’s results doctors are still telling patients that there is no Lyme disease in Australia, but Dr Curnow says that the 1988 study and the medical authorities have failed Australian patients.

‘Rather than treating people based on the history of debilitating symptoms and relapsing fevers, patients have been denied treatment for more than 20 years.

‘Patients such as John’s wife could not get treatment because the design of the test study failed them.

‘The testing was not designed for the infections in Australian ticks, and this is where we are today.’

With the growing number of Australians affected Dr Curnow says the health authorities need to urgently fund new research into tick-borne diseases to identify what diseases are in Australian ticks and ensure patients have access to accurate testing and effective treatments.

John Curnow will also be speaking at the Northern Rivers Lyme Network screening of Under Our Skinon Saturday May 31st at 2pm at the Byron Bay Community Centre, Jonson Street, Byron Bay."

REFERENCED FROM WEBSITE: http://www.echo.net.au/2014/05/lyme-tests-fail-patients-says-expert/