UNCOVERING LYME DISEASE: THE SUFFERERS
Lyme disease is a bacterial illness spread by tick bites. The effects are devastating.
Tahlia had been accepted to study a diploma in musical theatre at Sydney’s Brent Street, as well as at Melbourne’s Film and Television Studio International.
She’s made several trips to America to pursue her dream of becoming an actress- and it’s on one of those trips, it’s thought she may have been bitten by a tick.
In the US, the bacteria and resulting disease are well proven – each year 300,000 Americans are diagnosed.
But the journey to receiving a diagnosis here in Australia, let alone treatment, is a torturous one.
Despite thousands of documented cases across the country, and scientific evidence of the bacteria’s existence in Australia stemming back as far as the 1950’s – the federal government says there’s no concrete proof.
As a result, many doctors here are not educated to identify or treat the illness, meaning potentially life saving treatment – a simple course of antibiotics, is not prescribed in time to prevent the consequences.
“we’ve been told not to mention the L word because they will just brush you off and not want anything to do with you”
That’s despite knowing Tahlia may have contracted the disease overseas.
(Above: Kiara and Nikki Smith created this video to share awareness of their sister’s battle with Lyme Disease https://www.youtube.com/watch?v=Hog89DX00Lg)
Another person trying to educate others on the disease, former Newcastle Knight Ryan Stig.
Football was Ryan’s world from a very young age, and he worked his whole life to cement a spot in the NRL.
In 20-11 he finally made it, and in a big way.
He played 13 games for Newcastle and was handed a two-year contract by Wayne Bennett.
But it all came tumbling down when he was sidelined with a blood clot behind his eye, followed by symptoms mimicking chronic fatigue.
After two years searching for answers – Ryan has also been diagnosed with the disease.
He’s now unable to work or drive, but he has a new role, Dad to one year old Norah.
The young family has spent all of its savings on Ryan’s treatment, which is only available abroad.
His condition has improved slightly, he can now walk again.
But the damage is still something he struggles with every day – and he says what’s more frustrating, is the lack of action taken by the federal government and medical professionals.
Ryan’s gofundme:
http://www.gofundme.com/ryanstig
Tahlia’s gofundme
http://www.gofundme.com/supporttahlia
Lyme Disease Awareness Ride
https://www.facebook.com/lymesdiseaseawarenessride
Tomorrow night, disturbing claims Lyme Disease is being contracted in the Hunter – we talk to sufferers and the Newcastle biologist fighting for awareness.
Read more here about what is Lyme disease and the symptoms in the early and late stages.
Thank you Emma Murphy and NBN. Two of our children have lyme disease, probably contracted on the NSW Central Coast. We are fortunate we could arrange treatment in Germany and the Czech Republic. Not everyone is as fortunate as us. We once had a doctor in a hospital in Sydney take us into a room and close the door before telling us that she too had lyme disease, but would be treated as mad by her colleagues if she admitted it to them. We had overseas trained doctors diagnose lyme disease in ER in another Australian hospital and arrange for a PICC line for intravenous antibiotics, only to have the procedure cancelled the next day by a senior doctor because he told us he didn’t want his hospital involved in the controversy. It was ok though because he said “good luck” before he left us without directing any further treatment. We have multiple positive blood tests from overseas labs that are far better than Australian labs.
Media coverage like this is needed. Myself and my two children have lyme, which I unknowingly contracted overseas and passed congenitally to my children who have a host of diagnosis including Autism. It was my research into Autism that led me to test for Borrelia (Lyme) among other infections. The medical literature that was paramount in my investigations is recent and was published in March this year, providing world first biomarker based evidence that Autism is due to maternal infection. Borrelia is a bacterial infection are capable of setting up the required conditions in the body that are causal in developing autism. I would like to see a comprehensive report done on this aspect.
Thank you very much for this segment. This really is Australia’s hidden epidemic. I fell ill after a tick bite on the NSW north coast, and numerous doctors could offer no answers. I mentioned the tick bite and they instantly dismissed it, even though I was completely healthy until that point. I eventually found a GP who took me seriously and ordered more reliable overseas blood tests which came back positive for borrelia (Lyme-like) infection. I began antibiotics and am gradually recovering but not before this horrible disease almost cost me my life. It is completely unacceptable that so many should have to suffer when it is so avoidable. The things we desperately need in this country are: more awareness, support, prevention education, research, accurate testing, treatments, and GP training. A long list, but one that begins with recognition. We can no longer ignore this growing problem. How many more need to die before it is taken seriously?
Tahlia Smith you are amazing…I cannot comprehend what you and your family go through each day, life is so hectic and then there is this,,,you are still beautiful behind the seizures that you experience every day, I pray that you have enough funds to get you to Germany and they can help to cure this debilitating disease.
The Australian Government needs to step up to the mark and support Lyme Disease.
Ive just seen the report on NBN about Lyme disease. I was shocked to see Ryan Stig a sufferer…I knew Ryan when he was a youngster playing with the school boys rugby league. Ive often wondered where he got to as I knew he played some games with the Newcastle Knights. I knew his mum Fiona and dad Guy. My son used to play against him…they were both top goal kickers in the junior league. Im sorry to hear he is suffering and I wish him all the best in the future.
Thank you Emma for presenting this important article. I have been diagnosed with Lyme disease from a nymph bite (tick larvae) which occurred earlier this year on the NSW mid-north coast. I have recently learned from a Lyme disease specialist that the nymph stage of the tick can be far more dangerous than the adult tick. And the nymph will often leave no trace of a bite nor any localised skin infection. The nymph stage is about the size of a poppy seed. Having returned to my home in Canberra I have found that the entire medical profession here deny that this disease exists or could be contracted in Australia.
For someone that was 100% healthy 3 months ago and had not taken a sick day off work in 30 years, the Lyme disease is debilitating. My doctors tried to diagnose trigerminal neuralgia as the symptoms first started on my left hand jaw bone right next to where the nymph attached itself on my LH gland. Symptoms spread to my ear with incredible pain behind my ear, then burning pain in my neck. Followed by incredible sensitivity to my scalp. At this stage all symptoms were only on my LHS. This confuses the doctors as they can’t understand everything happening on one side only, but this is quite common with Lyme disease.
Then the symptoms spread to stiff neck, tennis elbow, sticky left knee joint and tingling down my left leg. After MRI’s of my head and basic blood tests, still no conclusion. The doctor referred me to a neurologist as the problems were now obviously too confusing for him and I must just be making them up! However the symptoms continued, with randomly blurred vision in the right eye, and floaties in the right eye. Followed by severe pain in my teeth (jaw bone), and problems with focus and sensitivity to bright light, brain fog, slurring of words and cognitive issues. My doctor said if my symptoms get worse to present to hospital as he couldn’t do anything more for me. Since I was now in a lot of pain with severe headaches and no pain killer would dull them, I presented to Canberra hospital. Well that was a joke. They tested my blood pressure, and temperature and a doctor asked about my symptoms. I asked if I could be investigated for mosquito and tick borne diseases as all symptoms had only occurred since holidaying on the NSW mid-north coast, and I had been bitten by both. He treated me like a fool and dismissed me from the hospital within 4 hours. So you can see the problems people are up against in Australia.
I decided to take things into my own hands at this time and began researching what diseases could cause my symptoms. After looking at all mosquito borne viruses, none matched all the symptoms. Especially the fact that the symptoms can flare up and die away within minutes or hours. I booked in to see a Lyme disease specialist in Sydney, and finally someone that listened and evaluated all my symptoms and agreed that it was Lyme disease. I have kept a comprehensive day by day account of all symptoms. 4 weeks on high strength antibiotics, and I have seen massive improvement. All brain related problems have disappeared, and the peripheral nervous problems have all markedly improved or disappeared. I am now sleeping well and have been to the gym for the first time in 3 months. There is still many months of antibiotics to go and still checks being done for co-infections. It is now known that ticks (and nymphs) can carry up to seven different diseases in their gut.
I trust in that writing this episode, anyone that is experiencing some or many of these symptoms does not get persuaded by their doctor that they have trigeminal neuralgia, or lupus, or MS or motor-neurone or rheumatoid arthritis and more. Not to say they don’t have these. However Lyme mimics many of these diseases, and so many people in Australia are being misdiagnosed, when all they needed was strong antibiotics administered very early in the detection cycle.
I am a single Mum and live alone. My 12 year old daughter left me a year ago to go and live with her father as she was scared I was dying. Now that broke my heart well and truly. When she was about 8 she came home from school and said”Mum you have epilepsy – you don’t have to be embarrassed – we learnt about it at school and that is what happens to you”
After many tests, hospital visits etc., I received a positive result from an AUSTRALIAN LABORATORY. and definitely do not mention the “L” word in hospital as they will throw you out as soon as they have googled it and for some reason not allowed to treat. I even ended up in a rehab by mistake. Niw that was scary! I tried to tell them I was not on drugs or an alcoholic but they would not believe me as druggos and alcoholics lie. My GP thought he was sending me to a nervous breakdown hospital and I thought I was going to get the pain sorted out.
My GP did not believe I had Lyme as it does not exist here. He only believed me when I showed him the results. Not sure where I got the tick – could have been on Hamilton Island or my parents ISLAND IN PORT STEPHENS. MARCUS BLACKMORE (Blacmores vitamins) told me it sounded like Lyme and out me in touch with one of his Chemists and that is when I finally got my diagnosis.
I borrowed the money to go to Germany for treatment but now have to treat all the co-infections and recently fell out of my buggy (I live on Hamilton island) and apparently was having seizures on the road. I will start on IV treatment mid July but have no money left. And having trouble getting my insurance which I have been paying towards all my life as the Doctors who are still treating are not allowed to and therefor I am unable to get a report from a doctor in order to claim my money.
I am still fighting and having the seizures but don’t remember them I only know from bruises, painful body parts and bumps on my head where I have fallen on the tiles.. I want to get better so I can have my daughter back. This damn disease has robbed me of my life and my daughter.
Regards
Linda Derry