Wednesday, December 12, 2012

Lyme Disease Association of Australia News Flash

Reposted from an email received:

December 2012

ILADS has for the first time decided to stream the recent ILADS conference on Tick Bourne Diseases in Boston for Australian patients and doctors.  The streaming will be on Saturday the 15th of December (12pm-7.30pm) and Sunday the 16th of December (12pm-6.30pm).  You can read the streaming schedule and look at bio's and introductory videos of the presenters here -  You can register for the event here -   We would like as many medical practitioners, naturopaths, allied health professionals, and patients to join in this very first streaming in our time zone (previously we've had to rug up and watch in the middle of the night).  ILADS is doing this as an experiment to see if there is enough interest in Australia & have challenged us to see how many viewers we can get, to see if they will repeat this in the future - please take up the challenge from ILADS and join in this free event (which will have very useful information on the treatment of Lyme Disease).

 This is a FREE event - although to purchase the DVD's after the streaming will cost $272 (plus shipping from the USA).

In November the LDAA released the first research of its kind in Australia into the experience of Lyme Disease patients in Australia - a HUGE thank you to the very dedicated volunteers that worked incredibly hard on this ground breaking research.  Some key findings were :
- the time between tick bite to diagnosis takes an average of six and a half years - the outcome means that 80% of Australian Lyme patients will progress to chronic Lyme Disease before they are even diagnosed.
- more than 80% of patients stated that they had to see 4 or more doctors before they were diagnosed, and of those diagnosed 75% have found it difficult to find a doctor to treat them.
- the average distance lyme patients are travelling (one way) to see a doctor to treat them is 236km (this doesn't include the 9% of Lyme patients that have travelled overseas for treatment).
- 67% of respondents have had to take time off work or school, and most alarmingly 46% have had to quit their job due to their Lyme Disease.
This report provides evidence that Australian Lyme patients are being misdiagnosed, mistreated and misunderstood by the medical community, allied health professionals and the Government.  Australian Lyme patients face discrimination every day in obtaining appropriate diagnosis, the availability of testing services, in accessing medial professionals who will treat them and in the economic burdens they are enduring in the pursuit of restoring their health.  There exists a serious gap between the medical community's acknowledgement of Lyme Disease and the reality of the Australian situation as presented in this study - it requires immediate attention, because the situation for many Lyme sufferers in Australia is dire.

Following several Freedom of Information requests to NSW Health the Lyme Disease Association of Australia was able to obtain information on how the "review" into Lyme Disease in Australia was conducted by NSW Health in April 2011.  Some highlights from our investigation
- the review panel met once, for a total of 2 hours, to review whether there is Lyme Disease in Australia.
- the review panel did not examine all the scientific evidence for the presence of Lyme Disease in Australia - only the work of Russell and Doggett from 1994 was discussed and as Richard Russell was on the review panel, he was effectively re-presenting his own research, although the same "courtesy" was not given to other Lyme disease researchers, even those with much more up to date research.
- the review panel looked at questionaires given over the phone to 8 patients of 1 doctor in NSW.  Their medical records were not examined.
- because the patients blood test results came from a non NATA accredited laboratory, they were completely dismissed.
- the final outcome of the "review" was that there was no conclusive evidence for Lyme Disease in Australia (but a 2 hour meeting could hardly determine this).  The review panel decided to write new diagnosis, treatment and testing guidelines regarding Lyme Disease in Australia based on the American CDC guidelines - which are largely based on the controversial IDSA guidelines which have been the focus of numerous legal challenges, and have been dismissed by the UK and German Lyme Disease Associations as inappropriate for Lyme Disease sufferers outside of the USA.

All in all we give this "review" panel an F grade for conducting a thorough investigation into the state of Lyme Disease in Australia.  Australian lyme patients deserve MUCH better than this - reviews such as this continue to perpetuate the myth that Lyme Disease is not in Australia, which is putting the health of all Australian Lyme sufferers at risk.  Shame on you NSW Health for such a pathetic attempt at a white wash.  We hope that the national review into Lyme Disease will be conducted more thoroughly, but given that they were attempting to do the review in secret we do not hold up much hope.

At 4pm on Friday the 23rd of November 90 people gathered in the Brisbane heat (well it was hot for us southerners) to protest to Queensland Health about how Lyme Disease patients are treated in Australia and especially in Queensland.  A HUGE thank you to the organisers who did a wonderful job.  It was a great event - with many people meeting other lyme sufferers for the first time, and the opportunity to hear from several speakers.  As a result of the protest representatives of the Lyme Community met with Dr Jeanette Young, Chief Health Officer of Queensland to discuss Lyme Disease.  She was polite but firm that there would be no change in policy until the National review into Lyme Disease by the Communicable Diseases Network of Australia was done.  This was the first we had heard of this review, so it was great to get this information.  Sadly the CDNA process is not transparent, and so it will require a lot of lobbying on our part to make sure that the science and evidence proving that Lyme Disease is in Australia is not ignored AGAIN.  Please contact us if you would like to help with this lobbying.
Researchers at the University of Sydney, sponsored by the Karl McManus Foundation are starting an exciting new research project to determine which pathogens are associated with Australian Lyme Disease.  They are calling on volunteers to participate in the study (both those with Lyme Disease and those that don’t have Lyme Disease). All it requires is that you donate a few blood samples for the study and fill in some surveys – all in the name of science (& finding out more about Lyme Disease in Australia!).  For more information go or

Ally Durr is an amazing 16 year old girl who has decided to do a solo 650km Wilderness Trek to raise awareness for Lyme Disease in Australia.  Nope, you didn’t read that wrong, she is walking the entire Australian Alpine Walking Trail – all 650km of it – on her own, to raise awareness for Lyme Disease.  She has headed off on her trek and expects to be walking for 6 weeks (and will be on her own on Christmas Day).  To read more about this amazing young woman, to help her with sponsorship (all money raised will go towards Lyme Disease research) and to follow the trek go to her website here or please contact Ally and her family -  

Just in time for your Christmas shopping – a local Australian company, South Coast First Aid Training (run by a lovely husband & wife couple) are selling the Tick Twister, which is a tick removal tool that you can put on your key ring so you have it with you everywhere you go. They cost $12 plus $3 postage handling; are available through their website 

The FIRST book on Lyme Disease in Australia has just been published!!!!!  The book, "Lyme Disease in Australia: Fundamentals of an Emerging Epidemic" by Dr Nicola McFadzean, marks an important turning point for the Lyme Disease community in Australia – making treatment more accessible to people all over the country. 

The book includes
·      Extensive guidelines for diagnosing and treating Lyme patients – including what the signs and symptoms of lyme disease and the associated co-infections are; how to test for Lyme Disease to get the most accurate results; treatment options, both pharmaceutical and natural, including detailed protocols; and how to cope with the illness.
·      Dr. Burrascano's Treatment Guidelines as an appendix (interestingly the American version of this book when it is published will have a forward written by Dr Burrascano).
·      stories by Australian Lyme Disease patients
·      a listing of the research going back to 1959 (including case reports published in the Medical Journal of Australia) that shows that Lyme Disease is indeed in Australia, despite the fact that it is ignored by Health authorities
The book is designed for both patients and doctors alike – and will hopefully help local doctors who aren’t Lyme specialists in supporting their Lyme patients with more confidence.
The book is available in both eBook and paperback format. For more information and to order the book this website has all the information

Lyme Cuddle Bears
One of our very creative, clever and kind members has made adorable knitted Cuddle Bears – we are pleased to be able to offer these as a gift for any child diagnosed with Lyme Disease (to cuddle up to for blood tests and visits to the doctor), and for sale to members of the public.  For children diagnosed with Lyme Disease we ask for a donation to cover the postage ($7.50).  To purchase a Lyme Cuddle Teddy the cost is $10 plus postage ($17.50).  The Teddy’s come in a variety of colours and are gorgeous.  To check out the Teddy Bears you can see them on our website ( & to order, please email us for details (

Feel free to contact the association - we are here to help you.

Until next time......
Nikki Coleman
Lyme Disease Association of Australia

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