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 - http://www.ilads.org/lyme_
This is a FREE event - although to purchase the DVD's after the streaming will cost $272 (plus shipping from the USA).
REPORT INTO THE EXPERIENCE OF LYME DISEASE SUFFERERS IN AUSTRALIA
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.
You can read the full report here - http://lymediseaseaustralia.
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.
BRISBANE PROTEST
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.
NEW AUSTRALIAN LYME RESEARCH YOU CAN BE INVOLVED IN
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 towww.lymedisease.org.au or ww
ALLY DURR’S SOLO 655KM LYME DISEASE WILDERNESS TREK
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 -www.allydurr.com or please contact Ally and her family - tdurr70@msn.com
TICK REMOVAL TOOLS AVAILABLE IN AUSTRALIA
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 http://www.
NEW BOOK ON LYME DISEASE IN AUSTRALIA!!!
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 -www.LymeDownUnder.com
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 (www.lymedisease.org.au) & to order, please email us for details (info@lymedisease.org.au).
Feel free to contact the association - we are here to help you. info@lymedisease.org.au
Until next time......
Nikki Coleman
President
Lyme Disease Association of Australia
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