Lyme Desease
Worldwide Lyme Disease Awareness Month runs from May 1.
WA Lyme Association, wala.org.au.
Lifeline has a suicide prevention help line: 13 11 14.
The brutal bite of a hidden illness in Australia — Lyme disease
MELENIE AMBROSE, Perth Now April 18, 2016 12:05am
SITTING in her home in the South-West timber town of Manjimup, grieving mum Pat Jeffery takes a deep breath. Then she shares her thoughts about her “dream” son, Bevan.
“Quiet, caring and gentle,” she says. A nature lover. Ironic, given nature was to be his undoing.
In 2006, the intelligent, sensitive artist was bitten by a tick while working on tree farms in Kojonup, 300km south of Perth. It was the minutest of bites. But it left him in such a state of hopelessness, pain and frustration that he chose to end his life last year aged 44.
Pat is not the only parent left with fading memories of a child who has self-euthanised due to a condition authorities say does not exist here. While “classical” Lyme disease, or Borrelia burgdorferi, might be recognised as endemic in other countries, in Australia there’s just denial. Doctors point to a 1994 study that failed to find any evidence of the bacterial species in native ticks, yet many say this entrenched belief is costing lives.
In 2013, budding Perth journalist Theda Myint chose to end her suffering after battling Lyme disease for 14 years, much of it spent in her room cowering from light and noise.
Following on from Bevan’s death on February 25 last year, two other Perth men in their forties — one an aircraft maintenance engineer — committed suicide after years spent fighting the blood infection and battling doctors, who wouldn’t take them seriously. Young WA bodyboarder Bryce Nettle took his own life in November, and then in February a psychology student, Scott Chant, met the same fate in Brisbane.
Six suicides — five just in the past 12 months.
Kate Daniels, chairwoman of the WA Lyme Association, warns there could be “many more”.
“These are just the people we know about through our patient networks,” she says.
Independent Victorian Senator John Madigan, the instigator of a landmark inquiry into Lyme-like illness that kicked off in Perth this week, says “one suicide is a suicide too many”.
“I don’t want to see any more people in that much hopelessness and despair. These people are genuinely suffering and they are being treated like lepers in their own country,” Madigan says.
The former boilermaker and blacksmith is on a quest for justice for “Lymies” around the nation, after witnessing first-hand their desperate situation.
These include mums having seizures, teenagers in wheelchairs, wealthy families turning their homes into pharmacies and sympathetic doctors “terrified” of coming under the scrutiny of the Australian Health Practitioner Regulation Agency (AHPRA).
“There is something drastically wrong here. I hope we can shine some light in some dark corners,” Madigan says.
The inquiry follows a study last year by Murdoch University researchers. DNA analysis of Australian ticks revealed bacteria with similar symptoms to Lyme disease, but not the Borrelia burgdorferi that so many sufferers have tested positive for in accredited labs, here and overseas. Proof again that when it comes to Lyme, it’s complicated.
Pat Jeffery can attest to that. She’s lost count of how many doctors and specialists she saw when Bevan was alive — seeking answers to his mystery illnesses.
The pensioner looks across to a painting hanging on the wall. It’s of roses from her garden, painted by her son. Clearly, there’s an urgency in its brushstrokes, as if time’s running out.
“He would say it’s not finished. He agonised over his work for years, but I love it,” Pat says proudly.
I point to another picture — a haunting self-portrait for which Bevan won a local art prize. What could lie behind his glum, penetrative gaze?
“Life’s a bitch,” answers Pat in no uncertain terms.
And that it was. For six agonising years with a bizarre malady of worsening symptoms — ailments that Bevan wrote about in a personal blog.
“I know the old me died as soon as I got this illness,” he wrote. “The pain, the exhaustion, central nervous system, cognitive and gastrointestinal problems (all) inconceivable to my pre-illness self. It’s hard not to come to the conclusion that you are screwed once you get this disease.”
Doctors were of little help to him.
“They said it was all in his head,” sighs Pat.
What changed was when she remembered something she’d seen in a book at home — The Complete Family Medical Guide, by a Brisbane GP, Warwick Carter. “It said Lyme disease is a common blood infection caused by bacteria from a tick,” she quotes from its pages.
There was only one problem — it was isolated to northeast America. How could Lyme be in Australia? Bevan had never travelled overseas.
In 2012, Pat soon had her own medical dilemma. Diagnosed with breast and liver cancer, within a week she had to give up her job as a high school education assistant for emergency treatment. Still she cared for her son, eating through $20,000 of her own superannuation to pay his utility and medical bills. By now his memory was beginning to fade.
“Bevan was a very intelligent boy, and it got to the point where I would say, ‘I’m going to Bunbury tomorrow to have treatment’. And he’d ring me and ask, ‘Where are you, Mum?’. I’d tell him, ‘Bevan, I told you where I was going’. This was really getting at him, that his brain was being affected.”
Pat paid for blood testing at an accredited laboratory overseas. The test results came back positive for Borrelia burgdorferi and two co-infections — conditions that if identified early could be wiped out with a short course of oral antibiotics.
But by now the disease was on the march.
“He said, ‘Mum, I wish I had cancer like you. At least you have treatment, you have recognition and there is an end to it’,” Pat recalls. “He believed he was no good to anyone and would never get better. He did not want to be on this planet.”
The last conversation between mother and son was on the phone on February 23. Little did Pat know that Bevan was penning his goodbyes to loved ones.
“Thanks to Mum, who has endured everything to keep me alive,” he wrote on his blog. “I can’t help waiting for medical science to find the underpinnings of this disease so that future suffering may be prevented for many people.”
Pat, who shared her story in a submission to the Senate inquiry, said his last words were: “I’ll see you tomorrow.”
“And then I got a call to say he had overdosed. He didn’t want to die, but he wanted to have peace.”
Michelle Nettle understands all too well what Pat has been through. In November, the Duncraig mum’s cheeky, adrenalin-loving son, Bryce, took his own life. He was 25.
Just a few months later, Michelle is understandably raw and in shock. Bryce’s favourite uptempo Mexican music wafts from the stereo, as we sip his favourite elixir, peppermint tea. What Michelle wants us to know is how very hard her son fought to get well — a brave battle until the very end.
“No one wanted to live more than him. I couldn’t believe what he put himself through to try to get better,” she says, producing an oversized bag filled to the brim with herbal medications and antibiotics.
She reflects on the good old days, when Bryce would drive his trusty blue Toyota, “Millie”, from one beach to another searching for that elusive wave. Over the years, Michelle took a number of ticks off Bryce’s body. They were particularly bad at Grey, a small settlement outside Lancelin, 127km north of Perth.
In December 2009, after a series of ailments, Bryce collapsed. He never recovered. No more work, dates, parties, bodyboarding or travel. He was 19.
Six years of Western medicine and alternative remedies saw Bryce in the hands of physios, chiropractors, neurologists, osteopaths, kinesiologists and undergoing MRI and CT scans. Finally, blood samples were sent to a lab in Sydney. Like Bevan, Bryce had classical Lyme, plus co-infections.
“Finding out was like a kind of euphoria,” Michelle says. “We finally got a diagnosis, but then we went, ‘Now what?’.”
Bryce, however, had a plan.
“I believe he gave himself a time frame,” his mother says. “As he approached his 25th birthday, I could see he was really, really struggling. I remember him crying at the kitchen counter. He said, ‘I don’t think I am ever going to get well’.
“He lost hope. Life was too hard. He turned 25 on the 3rd of October, and he died on the 17th of November. It was a steady decline of hopelessness. He just didn’t want to be here anymore.”
Her pain is shared by the family of another Perth man, “Dave” (not his real name) whose suicide will also be the subject of the Senate inquiry. This is the first time his family has spoken out.
Dave, an aircraft maintenance engineer, was bitten by ticks in 2000 while on holiday north of Carnarvon. Ensuing symptoms, including seizures and dementia, left him debilitated. After receiving positive test results from Germany for Borrelia burgdorferi and co-infections, he sought out Perth medical professionals.
“His Lyme results were ignored and not investigated,” his mother says. “No alternative diagnosis to Lyme was ever established. He felt no one in the medical profession cared.”
Late last year, Dave took his own life. At the time, he was fighting a losing battle with Centrelink over a disability pension. His last email to his parents on November 27 said, “F*** Australia”.
“In the end, our love and support was not enough,” his mother says. “Married in 2009, the best years should have been yet to come. So very, very sad.”
Turning to the future, what do the families want to see happen?
“I want to see medical fraternities research this,” Michelle Nettle says. “They must be able to diagnose and find treatment. That is their responsibility. Bryce will not be the last person to commit suicide over Lyme. I don’t want another family to go through this.”
John Madigan echoes her call.
“Every life is precious,” he says. “I’d encourage people who are suffering not to give up. Where there is life, there is hope.
“There are people in Parliament who do give a damn. We sincerely hope that this inquiry may be the first incremental step in helping sufferers and their families and loved ones.”
Off topic but here is another example of how our doctors are letting us down.
Brisbane man Michael Stoopman is a cancer survivor who believes the benefits of medicinal cannabis go way beyond palliative care.
Last year he had a large ulcerating tumour eating into his carotid artery in his neck that threatened his life.
Ulcerating tumours rarely heal and doctors told him little could be done other than managing his symptoms. So he started taking cannabis oil.
"Even though I'd been told by over 28 oncologists altogether and four other doctors that there's no coming back from a tumour that size, it stopped growing," Mr Stoopman said.
"Then one month later the whole wound closed up."
Within six months of starting cannabis treatment he was declared cancer free. http://www.abc.net.au/news/2017-06-18/doctors-learn-how-to-prescribe-medicinal-cannabis/8622362
Warning graphic image
This impressive 'bull's eye' rash (pictured) was caused by a tiny tick and is a clear sign of Lyme disease, which is one of the fastest-growing infections in the Western world.
Lyme disease: The Facts
Classical Lyme disease is found globally and is caused by bacteria called Borrelia burgdorferi, transmitted to humans by an infected tick.
Early signs of infection include fever, headache and flu-like symptoms. In the northern hemisphere, it can be diagnosed by the presence of a red, “bulls-eye” rash, although this sign is not always present.
Blood tests may not be as accurate if the patient has been infected for a long time.
Most cases are cured if treated early with two to four weeks of antibiotics. Australians have difficulty accessing this treatment because the disease is not recognised here.
The medical community is divided about whether Lyme disease persists as a chronic infection and disagrees over the benefits of long-term antibiotic treatment.
Recent research shows the bacteria can morph into persistent forms that evade antibiotics.
Patients are often co-infected with other illnesses from the same tick bite.
Lyme is called “the great imitator” because its symptoms can mimic diseases like Parkinson’s, Alzheimer’s and Multiple Sclerosis, which have no known cure.
Famous Lymies include former US President, George W. Bush, actors Richard Gere and Yolanda Foster, singer Avril Laverne, and Aussie tennis player, Sam Stosur.
Lyme in Australia
A 1994 study did not find evidence of classical Lyme disease in Australian ticks. Many of the co-infections associated with the disease are known to exist here and can cause symptoms that are like Lyme disease.
In 2015, Murdoch University tick researchers were unable to find classical Lyme disease in 656 ticks they had examined. However, the study found bacteria associated with Lyme
co-infections and several new species of bacteria. Among these was a small fragment of relapsing fever Borrelia, a genetic cousin to Lyme disease, which may cause similar symptoms. There is currently no commercial test available for RF Borrelia.
The Murdoch tick study will continue, also looking for viruses and parasites that might cause Lyme-like illness.
Avoiding the illness
Not all ticks carry human infections.
Avoid being bitten: In bush or coastal areas, wear a hat, long-sleeved shirt and pants tucked into socks. Use insect repellent containing DEET on clothing and exposed skin (not suitable for children). Permethrin soaked clothing is also recommended.
After being in tick-infested areas, do thorough checks, paying particular attention to the scalp, armpits and groin. Place clothing in hot dryer for 20 minutes.
If bitten, use fine-tipped forceps, grip close to the tick’s head and pull straight out. Avoid squeezing the body, as this may inject pathogens into the bloodstream.