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Living with Lyme disease

Is there anything worse than not knowing what’s wrong with you when serious symptoms kick 
in and affect
 your health and wellbeing? Yes – when you know what’s wrong with you but the Australian system can’t help you. SAMMI TAYLOR investigates

EUGENE Hansen has lived in Warrandyte his entire life. He’s a successful small business owner, a coach at the Warrandyte Junior Football Club and is a familiar face in our local community. He is a loving husband and a father to three children.

But Eugene has lived with a painful secret – an incurable disease. His health is rapidly deteriorating; his quality of life is in decline, yet he’s not receiving the help he so desperately needs.

Eugene suffers from Lyme disease, an infectious disease caused by bacteria and borne by ticks. Lyme disease is characterised by a steady break down of the immune system, causing those infected to become vulnerable to several co-infections. If left untreated, over time Lyme disease can cause a myriad of issues—seizures, migraines, cognitive impairment, arthritis and insomnia are all common for those with Lyme disease. These symptoms are often extremely painful and can, in some cases, be fatal.

But this is more than just your daily pains and aches.

“I’m in excruciating pain. I have seizures. I suffer excruciating migraines, between 21 and 25 days per month of migraines,” Eugene tells the Diary.

“I get pneumonia pretty regularly. I can’t battle illness. I avoid as many public places as I can—hospitals or any place where I could pick up any illness. I don’t have the capacity to fight off any infections.’

It took over 14 months, and 220 medical appointments, before there was even a glimmer of diagnosis or the hope of answers. Treatment, a cure and an end to this excruciating pain seemed like a lifetime away.

“I had CT scans, MRIs, blood tests…I had absolutely everything. The only logical conclusion they could come to was: ‘you’re nuts’. Neurologists throw their hands up in the air and tell you it’s all in your head. But, really? Simply, I am in pain and it needs to stop.”

Eugene’s blood was tested in Germany and America to diagnose the disease—and both tests came back positive. However, Eugene’s Australian tests showed no sign of infection.

The reason? As a technicality, the condition does not exist in Australia. Our doctors aren’t trained to diagnose it and our pathology testing doesn’t have the sensitivity to locate the infection in blood tests.

There’s cruel irony in what comes next. In the northern hemisphere, Lyme disease is not only treatable but curable. If diagnosed within four weeks, a simple course of antibiotics eradicates the disease from your system: 28 pills and you’re cured.

“It’s like if you stand on a rusty nail here in Australia, you go and get a tetanus shot. All I needed was those antibiotics for four weeks. It’s exactly the same as treating the common flu,” Eugene says.

There are at least 1494 diagnosed cases of Lyme disease currently in Australia, according to the Lyme Disease Association of Australia.

Another Warrandyte man, Terry Ryan, 45, has also suffered Lyme-like symptoms for over a year. The similarities between him and Eugene are indisputable: they’re both tradesman, living and working on expansive properties in the Warrandyte area. They’re both family men, devoted to their community and battling a mysterious illness that has destroyed their immune system and quality of life.

“I’ve been to dozens of hospitals, seen dozens of neurologists, cardiologists, immunologists. They pretty much told me it was all in my head and I needed to see a shrink,” Terry told the Diary.

But the physical pain and symptoms many Lyme patients suffer are clear signs the disease is far more than a mind game.

“I’ll collapse and have seizures and sometimes I’m just really out of it. I have no control over my body. It’s like there’s this big fog cloud over my head. It’s like you’re in a mist and you just don’t know what’s going on.”

Terry and Eugene are just two among the potential cluster of Lyme disease patients in Warrandyte. The Diary is aware of and in contact with at least a further three members of our local community who are battling the condition.

Australia’s medical boards, federal government and insurance agencies all deny Lyme disease exists in our country. For Lyme patients, these auhorities turning a blind eye to their suffering is just another punch in the guts. With no acknowledgement of the condition, there’s no accessible, or legal, treatment and no Medicare rebates.

Eugene says: “You basically end up paying for all of your treatment and there are locals here in Warrandyte who can’t afford that. They suffer through all the side effects, the seizures and the chronic symptoms, because they simply can’t afford to pay for the treatment.

“I could go to Germany. It costs $77,000 for the treatment there. We’re now looking at selling our home for the treatment. We shouldn’t have to go through this.”

But Eugene is determined to not only overcome his own illness, but fight to improve the lives of other Lyme sufferers.

“I want to just go and shut the gates of my property and get better. But I can’t do that unless I get the acknowledgement that [Lyme disease] exists,” he says.

“I’m going to scream into any microphone until they say that the easiest way to get this bloke to go away is to get off the fence, acknowledge it and fix the issue.”

The Lyme Disease Association of Australia is pioneering that fight. The dedicated group of volunteers provides support for Lyme patients—connecting them to medical services, peer support and updating them with new information. A recent awareness campaign, launched in May this year, saw 20,000 postcards with Lyme awareness messages sent to politicians across the country.

“I believe the government needs to take action right now. They need to indicate there is a Lyme-like illness here and it’s an emerging disease,” says Sharon Whiteman, president of the Lyme Disease Association of Australia.

“Lyme patients need to be given the best standard of treatment. It is hard for anybody to understand that in a country like Australia patients, who are obviously very ill, would go to a doctor and be told that their symptoms and all kinds of abnormal tests are being ignored. It is unbelievable, but it is the truth.”

The next step for the Lyme Disease Association of Australia is to get our federal government to take notice.

“The politicians are skirting around the issue. We’ve been bashing [Kevin Andrews’] door down to meet him but he hasn’t responded to me at all,” Eugene says.

“[There are] constituents here who are suffering, who are in horrendous pain. He says he’s a strong advocate for families—well what about my family, Kevin? Come and spend some time with me and my family when I’m having a seizure or a migraine at 2 or 3 o’clock in the morning. Come with me and tell my children why I’m sick.”

The office of MP Kevin Andrews has sought advice from the Minister for Health, Hon. Susan Ley. They are in the process of investigating the issue of Lyme disease in our community.

“I understand and sympathise with the concerns of people and their families who are suffering from a chronic debilitating illness,” Mr Andrews told the Diary. “But it must be up to the patient and their treating doctor to decide on an appropriate diagnosis and treatment.”

There also is some consolation in the support from the Warrandyte community and those battling the illness are drawing strength from one another.

“I keep in contact with all the others,” Terry says.

“Every now and again we catch up down the street or at footy or whatever, just to see if there’s anything new and what’s going on.”

Eugene says: “And Terry has been a tremendous support. He’s become a part of our support network. I want to try to arrest this thing. I don’t want to give in. I’m in a constant battle with pain because I want it to stop. I want to get better.

“I’m prepared to do what I need to do. I’m going to show everybody here that I can beat it.”

 

If you have any information on Lyme disease, or think you may be experiencing symptoms, please contact your doctor. More information on Lyme disease can be found at www.lymedisease.org.au

Police urge Warrandyte residents to step up home security in light of crime spike

MANNINGHAM crime prevention unit is urging residents of Warrandyte and surrounds to be vigilant with security of their homes and to invoke the basic Neighbourhood Watch Principles after another increase in crime in recent months.
Senior constable Carla Reardon told the Diary there had been a spike in burglaries in Warrandyte, Templestowe, Park Orchards and Donvale.

“By no means are we wanting to alarm people, but do need home security increased in the area to help deter burglars,” Sen Const Reardon said. “On many occasions people have security systems but  aren’t arming them or they are inactive for a variety of reasons including being broken or residents are only out for a short time.
“We are reminding residents to lock their houses including doors and windows, be aware of any suspicious behaviour, and people or vehicles that look as though they are out of place. Descriptions and details are very useful. It’s important to report any suspicious behaviour to 000 at the time of seeing these things so police have the opportunity to attend and make an assessment of it.
“Increase natural surveillance, for example, keeping gardens trimmed and having working sensor lights.
Get to know your neighbours and notify them if you will be away for a period of time, even just the weekend.”

Five for friday (grand final weekend)

One… Grand Final day and the Warrandyte Community Market is on tomorrow. It’s a magnificent 28-degrees and sunny. Why the hell wouldn’t you?

Two… Warrandyte Cricket Club season launch on Thursday 7.30pm with special guest speaker, former Aussie paceman Rodney Hogg. Go Bloods.

Three… Those of you who have not yet booked to see All in the Timing, Warrandyte Youth Theatre’s performance of 5 brilliant David Ives plays are missing a real treat.  A fantastic funny evening (or afternoon) awaits.  Grab the last tickets now for performances for tonight and tomorrow.  You will not be disappointed.  Tickets at http://www.trybooking.com/Booking/BookingEventSummary.aspx?eid=151653

Four… Fabrics and book sale at Warrandyte Uniting Church tomorrow from 10am until 3pm.

Five… Looking to expand your personal universe? The Warrandyte Community Centre (upstairs) plays host to a book launch – Peter Smith’s ‘Quantum Consciousness’. From 3pm.

ATO scam rattles residents – just hang up!

THE latest money-grabbing scam has hit residents in Warrandyte in the form of a hoax phone call to landlines or mobile phones.

On answering the phone, the listener receives a recording in a female voice with an American accent advising it is a call from The Australian Taxation Office suggesting you have failed to pay an outstanding debt. You are warned unless contact is made immediately, arrest warrants will be issued.

To prevent that from happening the caller is told to phone a Melbourne or Sydney number to arrange immediate payment.

Needless to say, it’s a hoax message.  The Diary contacted the ATO who advise it has been flooded with calls and has nothing to do with the message. It has been reported to the Australian Federal Police, but the AFP are powerless to stop the calls as they originate from overseas and the phone numbers given (Voice-over-IP lines) are changed frequently.

If you receive such a call, the best advice is to simply hang up.

Bloods bag three flags

WARRANDYTE Football Club made history in a momentous day for the community winning three out of three grand finals in front of a jubilant crowd at Walker Park on Saturday.
the U19s, Reserves and Seniors outfits all displayed the necessary grit and desire to record hard-fought wins over Ferntree Gully, Forest Hill and Kilsyth respectively.
For Warrandyte, the Grand Final victories mean a promotion back into division three of the EFL, as well as a place in the history books, becoming the first team of the decade to have all three sides win their grand finals in one year.

2015 triple flag souvenir liftout Pages 17-20

Icing on the cake

Bloods seniors seal the deal for triple treat

By MIKEY DI PETTA and SCOTT PODMORE

AS if the pressure wasn’t on.

Two sensational performances by the Warrandyte Football Club Under 19s and Reserves to claim flag glory, and the Bloods seniors were suddenly faced with ticking off a perfect day – a triple premiership bonanza that was as rare as hen’s teeth.

Pressure, indeed, because our seniors were the ones every fan was most confident about and also because their victory would be the deciding factor for moving back into Division 3 where the competition is better and healthier.
Playing a Kilsyth team that had pipped the Bloods by a point during the season, Warrandyte was well and truly primed with a week off after a convincing second semi final win over Forest Hill and also welcomed back James Appleby and Troy Ratcliffe to field an imposing line-up full of strong run and carry.
The Bloods line-up couldn’t look any more menacing.

With the crowd also primed after two big wins in the earlier games, the roar for the Bloods was immense.
Warrandyte couldn’t have asked for a better start, winning the ball early out of the middle and generating penetrating inside 50 entries. The Bloods forwards were licking their lips and it didn’t take long for Froud to claim his first and Appleby to slot one shortly after. The Bloods stormed to a 13-point lead within minutes.
However, Kilsyth proved it was up for the fight and star full forward Jay Sherlock answered Froud with a major of his own, starting a run of three straight Kilsyth goals. The momentum of the game was turned on its head and only desperate defending by skipper Tom Naughtin kept the margin under single digits at the first change.

Sherlock began to stamp his authority on proceedings and booted a controversial second major that seemed to graze the post to hand Kilsyth a two-point lead at quarter time.

Coach Tout calmed his troops in the quarter time huddle and pointed out “we knew they would challenge like this, it’s no surprise”, urging his troops to settle, focus on their roles and get stuck into the style of game that had worked for them all year. That including demanding more from playmakers to rise to the challenge, and even squared up in and under veteran Tom Appleby with a poke to the chest making it clear he was one he wanted a big lift from – and deliver he did, as the Bloods came out in the second with a dominant display throughout the second term kicking six goals to two.

Dunn and Froud began to link up in brilliant fashion, assisting goals for each other to help build a strong Warrandyte lead. They would continue to dominate and bag 11 majors between them in a powerful display of two gun forwards seamlessly linking up as the competition’s most dangerous forward set-up.

Froud ran amok and quickly had the crowd in a state of delirium with three majors in 10 minutes and that excitement reached fever pitch when skipper Tom Naughtin bombed one in from outside 50.
As the half-time siren sounded, the Bloods left the field to raucous applause, having taken a commanding 25-point lead, 9.7.61 to 6.6.36.

The onslaught continued in the third term and Warrandyte seemed to have one hand on the cup with Froud benefiting from quick inside 50s that were clearly unsettling the Kilsyth defence. The Warrandyte run and carry was on show and was complemented by plenty of physical pressure from Jacob Daley, who threw his body into every contest as he had done all year. Daley was tremendous, an inspiration all day and eventually was rewarded with best afield honours.

Fans young and old began to accept that the trio of wins was now not just a possibility, but was looking extremely likely with Warrandyte leading by 44 points with a quarter to play.

It seemed impossible, but Kilsyth capitalised on Warrandyte’s drop off in intensity at the beginning of the fourth to squeeze their way back into the game. The underdogs chipped away at the deficit and suddenly found themselves within four goals off the lead with about ten minutes to play, but Warrandyte did enough to hold that lead and emerge as 23-point victors claiming the third premiership of the day.
Warrandyte fans piled onto the ground to celebrate with the three sides who had provided the first taste of grand final success since 2006. In a spirited community gesture, the senior team invited one and all in for the theme song which was delivered loud and proud.

Bring on season 2016 when the Bloods step up to Division 3.

FINAL SCORES

Warrandyte 3.5.23   9.7.41   15.10.100   16.11.107

Kilsyth           4.1.25   6.6.42   8.8.46       12.12.84

Warrandyte goals: Froud 6, Dunn 5, Naughtin, Lamaris, Ansaldi, Skorsis, T Appleby.

Warrandyte best: Daley, Gauci, Froud, T Appleby, Tout, Naughtin.
FLAG NO.2 Reserves dig deep and deliver

FRESH off the back of the inspirational U19s victory, the Reserves came out pumped up and ready to add to the Warrandyte tally.

The misty morning had cleared and the sun began to beam down over Walker Park and the crowd swelled to new levels in expectation for another terrific contest.

However, the game was a scrappy affair for the first 15 minutes of the match when both teams locked down each other’s forward line and the scoreboard was showing donuts. Not even a point had been scored as both teams went at it with relentless intensity.
But the Bloods finally broke the deadlock, finally managing to prize the ball free out of the endless stoppages and peg the first on the board before 100-goal star Gareth Hitchman also found a way through the big sticks to give the Bloods a two goal cushion going into the quarter time huddle.

Being scoreless in the opening stanza didn’t deter Forest Hill, who came out with the same level of attack on the ball and it started paying dividends.

Stoppages were certainly clogging the flow of the game and neither side was able to crack the game open. Jake Bentley showed admirable determination around the packs to help Warrandyte restrict opposition movement, but it was clear the Bloods had to get their season-defining “run and gun game going” to have a real chance, as one supporter aptly pointed out behind the fence.
A quiet quarter on the scoreboard for Warrandyte allowed Forest Hill to creep closer as the halftime siren blew, and managed to get within seven points of the Bloods, trailing Warrandyte 2.0 12 to 3.1 19.
An expectant and slightly restless Warrandyte crowd primed themselves to get behind the Reserves as they came out for the second half and do their part to help the side secure a second Bloods premiership.
However, it was Forest Hill doing all the singing in the stands after a magnificent three-goal burst stunned Warrandyte midway through the third term. The Bloods midfielders struggled to provide any serviceable entry for star forward Hitchman and co, as the fiercely congested nature of the game seemed to suit Forest Hill.

Strong defending by the Forest Hill back six restricted the Bloods to just two behinds for the term and Warrandyte trailed by nine heading into the last change, leaving the game on a knife balance. It was looking terribly like a repeat of last year’s Grand Final match in which the Bloods succumbed when it counted.

But not this time.
After a three quarter time spray by coach Wally Cashion, the Bloods came out showing they wanted it more. The game continued to sit in the balance throughout the early stages of the quarter, but it was Warrandyte holding field position due to terrific forward and midfield pressure, in particular by Toby Versteegen. The Bloods reduced the deficit to just two points by the 10 minute mark of the term and what followed in the final 20 minutes gave every supporter at the ground goosebumps. The Warrandyte boys well and truly switched on in the game’s most defining moments.
The Bloods found another gear and their forward line burst into life, seemingly feeding off the crowd. Hitchman bagged his third, which was quickly followed by a brilliant running goal by Kyle Sultana to put Warrandyte eight points up with just 10 minutes to play.
Dangerous small forward Matt Colborne-Veel finally got his moment late in the term kicking a clutch goal to give Warrandyte a double digit lead and send the pro-Warrandyte crowd into raptures.
With time winding down, Mitchell Gaffney iced the cake, kicing one of the goals of the season tucked on the boundary line to seal a classic 19-point win, Warrandyte taking the premiership by 18 points.

 

FINAL SCORE

Warrandyte 2.0.12   3.1.19    3.3.21   8.9.57

Forest Hill   0.0.0     2.0.12   5.0.30  6.3.39

Goals: Warrandyte: Hitchman 3, Sultana, Gaffney, Jurey, Colborne-Veel, Parker.

Best: Bentley, McWhirter, Munro, Johnstone, Versteegen, Gaffney.

 

Flag No.1 One giant leap for Warrandyte

By MICHAEL DI PETTA

UNDER 19s captain Sid Phillip-Owen said it best on Saturday in the post-match pandemonium as our Thirds rose from being underdogs to premiership heroes – “it’s one giant leap for Warrandyte”.

The Bloods’ Under 19s were first up on the big day and set the tone in sensational fashion claiming the flag with an inspiring 22-point win over Ferntree Gully.
Phillip-Owen played a terrific captain’s game to take home best afield honours and young star Benny Richardson kicked three to lead the Bloods to victory.

The game began in in typical finals fashion; tough and uncompromising, with consistent drizzle also affecting play. Warrandyte was relentless in its attack on the football in the middle of the ground and staunch down back, limiting inside fifties.
Young star Ben Richardson got Warrandyte off to the start they needed, finding space in the forward 50 to mark and convert.
The game remained stoppage heavy, with snap shots at goal serving as Warrandyte’s only way of troubling the scorers until Daniel Mifsud booted a beauty through the Bloods second.
Richardson added another late in the quarter to cap off a terrific first term, allowing Warrandyte to stun the more fancied rival in Ferntree Gully and take a 22-point lead into the quarter time break.
The second term was a very different affair, as Forest Hill emerged a much more effective team attacking the football with more vigor then the Bloods.

Getting numbers around the stoppages, the Forest Hill midfielders and forwards worked to lock the ball in their half and struck back with two quick snapped goals.
A couple of dropped marks and strong forays forward allowed Forest Hill to draw level, before a timely after-the-siren goal by Josh Beasley relieved the pressure for Warrandyte and allowed the Bloods to five-point lead into half-time.

The second half saw the Warrandyte leaders come to fore, especially captain skipper Sid who led by example, going back with the flight and putting his body on the line over and over again to rescue his side from opposition attacks. Defender Astan Ure stuck to his task in a lockdown role in the backline, but Ferntree Gully were still able to wrestle control of the game and took a five-point lead into the final change.

With the game and season on the line, Warrandyte lifted brilliantly in the final term, with Sean Bowers slotting one to put the Bloods 10 points clear with just 15 minutes to play. Ferntree Gully attempted to respond, but Captain Sid continued to play a blinder, especially when it counted, and refused to let his team surrender the lead.
A quick-fire pair of goals by big man Josh Beasley put the game beyond doubt with just a few minutes to spare and Warrandyte and supporters celebrated the first flag of the day.

FINAL SCORE

Warrandyte   3.4       4.5       5.8       9.13.67

Ferntree Gully 0.0     3.6       6.7       6.9.45

Warrandyte goals: Richardson 3, Beasley 3, Bowers, Mifsud, Bektash.