Australia’s First Lyme Disease Protest – 14th September 2012

UPDATE: Wow over 150 people showed up to protest! Way to go Australian Lymies!! Way to get the word out there. So much for there NOT being Lyme in Australia. Here are some pics and a short interview from Danielle Ryan, the organizer of the protest.

Interview with Danielle
Lisa: What made you do this protest?

Danielle: I’m angry that it took 30+ specialists and i had to diagnose myself

           and i couldnt walk and they told me to accept it and live on 4 painkillers and 2 x antidepressents.

Lisa: How many people turned out?

Danielle: 150+ People


Lisa: What were you hoping to accomplish and do you think you did?

Danielle: our objectives were:

1. Funding for Tick Borne Diseases Research Group (at The University of Sydney)
2. Revised accurate testing methods and processes
3. Education programs (doctors & public) – for prevention & early diagnosis
4. No legal implications for Australian doctors treating Lyme Disease
5. Workers compensation rights for tick borne diseases contracted at work
6. Recognition of the illness NOW (including update of the NSW Health position on Lyme).

This will provide  Australian doctors comfort in testing and treating for both internationally and locally      acquired lyme disease, and will reduce mis-diagnosis / stop lyme patients being denied treatment.

Lisa: Thank you for all that you did to promote Lyme Awareness.

Danielle: You’re Welcome 🙂

 

Pictures from Danielle Ryan, Natalie Young and Janice Foster

See More Pictures Here

 

A Place for everyone in Australia to register there support for Lyme disease Awareness Protest in Sydney on the 14th of September 2012.  Click Here

Please join Lyme Disease Protest NSW Facebook Group

WHAT IS LYME DISEASE?

Lyme Disease is a bacterial infection transmitted to humans by ticks and potentially other insects. Left untreated, Lyme Disease and Lyme Co-Infections (other bacteria and viruses also carried by ticks that are often also transmitted at the time of bite) can cause numerous health symptoms including severe neurological damage and severe pain, and can be fatal. Lyme Disease often mimics other illnesses such as MS, Motor Neurons Disease, Alzheimer’s Disease, Anxiety, Autism, Fibromyalgia, Parkinson ’s disease, Behavioural / Psychiatric Disorders, and Chronic Fatigue syndrome. Thousands of Australians may be infected with Lyme Disease, but are misdiagnosed with other illnesses due to lack of education within in the Australian medical community.Numerous Australian children have also been diagnosed with Lyme Disease via pregnancy / birth infection. Overseas research has also indicated Lyme bacteria (borreliosis) has the potential to be transmitted via blood transfusion, organ donations and sexually. In the USA where Lyme was first discovered during the 1970s, Lyme Disease is now epidemic in numbers being the 5th most commonly reported Nationally Notifiable Disease. Lyme has also subsequently spread across the world with European and Asian countries recognising the disease and treating Lyme Disease patients.

WHAT ARE THE ISSUES WITH LYME DISEASE IN AUSTRALIA?
The Australian government, both State and Federal, continue to deny that Australian ticks carry lyme disease despite thousands of Australians being bitten, presenting with known Lyme Disease symptoms, testing positive for the illness, and seeing drastic health improvements with treatment. This denial is conclusive of a single study conducted in the early 1990s which assumed that only one strain of borreliosis can cause Lyme disease. There are, in fact, numerous strains of borreliosis which the ticks were not tested for during this study. This included those European strains causing severe neurological symptoms; coincidentally these strains present similar symptoms to those seen in our Australian Lyme Disease patients. The investigation into the possibility of a local strain of borreliosis was also not investigated and tested for.
Australian patients suffering from this illness are being told “Lyme isn’t here” or “there is little evidence that it occurs in Australia”. NSW Health (who advises other Australian state health departments on testing and treatment guidelines) are denying Lyme Disease patients with accurate testing for Australian strains, and withholding proven treatment methods to relieve their symptoms and prevent their deaths.

There have been various previous Australian research studies conducted by qualified medical professionals and animal zoological experts proving Lyme Disease exists in Australia. This research has been available as early as in the 1950s when lyme borreliosis was discovered in Australian native animals. This study and later studies proving the existence of Lyme in Australia has been ignored by NSW Health. Australian patients are being left to suffer, or told they are mentally unwell. There have been known deaths due to Lyme Disease in Australia.

NSW Health have also been ignoring the hundreds of patients who have been contacting them via letters and phone-calls for several years alerting them of the illness and requesting their support.

The Lyme Disease community are holding this peaceful protest to request their acknowledgement of their illness in hope that they can achieve recognition of their illness, research funding, education of Australian medical professionals, and accurate testing and treatments within Australia.

 

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One thought on “Australia’s First Lyme Disease Protest – 14th September 2012”

  1. My husband and I have Lyme disease, when we were first infected with Borrelia and co-infections, we were, as described above treated so badly by the Australian Medical Authorities, Entomologist, etc, here in Australia that we thought being dead was the only option for a while. Hubby was bitten by arthropods off nesting birds which were above a communal Depot bed that he slept in, at North Sydney.
    The skin issues this left him with were just awful and were misdiagnosed as Scabies. We did not link the aches, pains, mood swings, sore soles of feet, fatigue, moulting hair, etc, that followed this vectoring.
    It wasn’t until he was bitten a second time by bird arthopods a year later at Ryde that his internal symptoms flared so alarmingly, including legs going from under him, collapsing, severe headaches, severe atrophy, unbearable pain and so much more, that we seeked further medical assistance.

    This was the beginning of our worst nightmare, the parasitical infestation from the multitude of bird arthropods that had buried into him, that this left on his skin and the skin issues that this caused, that we now know was a Lyme EM and ACA rash, were misdiagnosed as Scabies and heat rash once again by the GP’s here.

    Misdiagnosed as Eczema, Grover’s disease and Delusions by Dermatologist.

    The internal symptoms that followed the skin symptoms were misdiagnosed as Chronic Fatigue Syndrome, Fibromyalgia, Arthritis, Bursitis, Gout, GERD, and Terminal Cancer by Infectious Disease Doctors.

    When we tried to tell them and the Entomologist about him being bitten by parasites off birds, they totally disregarded this and told us to not mention birds or parasites and that we were not a third world country so did not have to worry about such things.

    We were asked by most of the Medical people we seen, if we ever left Australia, when we said no, they said we couldn’t have Lyme disease because Australia is different from the rest of the world and we don’t have the world’s fastest emerging disease or the migratory birds that take it into every continent of the world.

    We asked them to at least test us for Rickettsia, because at least they admit to that in Australia, they said if we hadn’t been to far North Qld we could not have Rickettsia. (Yes these are the people they have left in charge of the surveillance of this once great and healthy Nation).

    Through research we realised there is a multitude of Scientific, Entomologic, Medical and Ornithological research from all other countries demonstrating that Australia have some of the longest travelling Migratory birds known, which go through Europe, America, ASIA, INDIA, etc, etc.

    That are competent and known reservoirs of Borrelia and co-infections including Rickettsia, that carry and disperse, lice, mites, fleas and all stages of ticks including soft ticks that favour birds’ nests, as well as larvae and nymphs, all of which transmit Lyme disease and many co-infections to humans and that these are so tiny but can attack in multiples and often infest mattresses, homes and human beings.

    These are often referred to as bed bugs. (Yes bed bugs are often off birds and are all of the above).

    http://www.lymeaustraliarecognitionandawareness.com/birds-as-vector–reservoir-hosts-including-examination-of-iuriae-seabird–iauritulus-bird-ticks.html

    http://www.lymeaustraliarecognitionandawareness.com/nsw.html

    Perhaps if the Government got a true panel of experts and Entomologists together, who have no hidden agendas or mistakes to hide, instead of the same bumbling fools who got it wrong nearly two decades ago and have done everything in their power to cover their deadly blunder ever since.

    Who purely sat in a room in April last year and agreed to not use any research funds or do any research to further investigate the rapid spread of this long unchecked disease.

    I suppose if you have watched many people including children suffering torturously and dying from a disease for nearly two decades for your own selfish purposes, why come clean now and blow your cover.

    I have sent many letters to MP’s and the Health Minister along with research demonstrating this vital information regarding how common the carriers of these diseases are to everyone including Australian’s, I got replies saying other countries have these diseases and birds that carry them but not Australia.

    I have asked in writing, local MP’s, the Health Minister and others for the names of these people, in the so called expert panel last year, I explained that I already knew and was astounded that this is what happened.

    I explained that the Australian public had the right to know, who was deciding the fate of their and their children’s wellbeing and that I wanted it either confirmed or denied in writing, I never got an answer, just a lot of Dear John garble.

    I know many others have sent them similar information that could help to alleviate so much unnecessary suffering, misery and death, but now instead of coming clean and assisting those suffering this horrendous disease, or working towards preventing further unnecessay suffering and deaths.

    They realise awareness is now spreading nearly as fast as this disease and that people are being informed about just how common and easy to catch this disease really is because they are being told the truth about the bird involvement.

    As well as being that several have already applied for Workers Compensation who have got Lyme disease at work. So they have recently, hoping no one would notice, conveniently slipped new Workers Compensation Legislation in, to cover themselves and avoid paying Lyme disease sufferers who get this from work.

    It is clear that this new Workers Comp Legislation is targeting Lyme disease, but why would they target to not pay compensation for a disease in this country, if they think it is either rare or non-existent? Big move for Government to manipulate and introduce new legislation for something that they say doesn’t exist here.

    Extract below from the SMH article yesterday, comments from the Public Service Association:

    “I would not like to be someone who contracts this disease in NSW in the course of their employment because of the recent changes to the workers’ compensation legislation, as you would have to fund your own legal challenge on the basis of a disease that is not recognised by government health authorities.”

    How very shifty, heartless and inhumane. May God forgive those responsible, who through direct manipulation or ignorance have killed and or stolen so many children’s youth, health and innocence from them, because the mums and dads of the untold numerous amount of suffering children, never will.

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