Dr Richard Horowitz - Never ever give up
Murdoch Pilot Study update
We'd like to thank all the 60 or more 'early adopters' who have already completed their forms and had their samples sent in to the research project. We acknowledge that there's a bit of effort involved and we're appreciative of the contribution to the cause.
The early submitters have assisted in the clarification of procedures and the Murdoch team have updated their website. The requirements for taking part in the pilot study remain unchanged - that is that patients must have a known tick bite and a positive result from any lab for any tick borne disease. You are still able to send your samples if you don't remember a tick bite, but those samples will not be included in the pilot and will be securely stored for future testing.
Unfortunately, volunteers from some states are restricted from participating due to limited availability of blood transportation from some states. The current list for participating labs is:
Laverty Pathology (NSW), QML Pathology (QLD), Dorevitch Pathology (VIC), Western Diagnostic Pathology (WA)
We've been made aware that some doctors could not or would not draw the blood themselves. For patients that have to get the laboratory to take their blood, they may be invoiced. If this causes any financial distress, please contact the Lyme Disease Association of Australia for assistance via email on firstname.lastname@example.org with: a) your details b) a photo of the invoice from the lab c) photo of your Murdoch project application – we will pay the laboratory invoice directly on your behalf and confirm with you.
We have been told that some doctors are concerned about signing the forms and being linked to this project. We respect their choice, we advise you to be persistent in finding a GP. This is simply a project addressing research urgently prioritised by the Chief Medical Officer since July 2014 and there is updated information for doctors on the Murdoch University website to support them in being fully informed.
Remember, if you do not meet the criteria for the pilot study you may still volunteer, but your sample will be stored for possible future studies which are subject to funding and/or other conditions.
Murdoch are accepting financial donations for their tick research - you can give here (select "personal donation, then research tick borne disease" from the drop down box)
Good News – Raffle extended!
We are happy to announce that you still have a chance to win your very own Thermomix. New draw date is July 18th.
May Lyme Project 2017 welcomes two key partners!
"Lyme disease is a real concern to our national membership and our full executive team endorsed the 'Bite of Lyme' campaign for change. We are looking forward to combining our efforts with the LDAA to raise awareness and funds to improve outcomes for current and future Australian Lyme patients." said National president, Dorothy Coombe.
We are also proud and excited to let you know that the LDAA will partner with the US-based, LymeDiseaseChallenge group. Like us, they are grass-roots and patient-lead – a global partnership for real action both with and for Lyme patients. We may have similar or the same or completely different 'bugs', but many of the challenges in regards to recognition, early diagnosis and effective treatment are identical. It's time for change.
We have a small volunteer team ready to help patients, their families and communities make a difference in May. It's SUPER simple, take a photo on your own, an a group or at an event, then share and donate – Give$10forLyme. #BiteOfLymeAU #LymeDiseaseChallenge
ACNC Charity Tick Approved!
Yes, you heard it hear first. The Lyme Disease Association of Australia is now ACNC Charity Tick Approved.
What does this mean? It means we are accountable and transparent to you, our ever growing community. Charities without the ACNC Charity Tick have had issues with meeting their reporting obligations or had action taken.
Community Affairs Final Report on Lyme-like Illness Inquiry has been published!
There have been 12 recommendations around testing and patient support tabled for the Inquiry into Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness.
You can find them on Page 10, or read the report in full. Or watch the YouTube clip below of proceedings:
LYME FLASHBACK: Lyme disease in Australia in 1992!
Watch this special report from ABC's 7:30 report on Michelle Wills research about Lyme disease from 1992:
"We knew we had a break through as recently as about a week ago  when we discovered that the microbe that we have been characterising is actually structurally very similar if not identical to the 'classical Lyme' disease [Borrelia burgdorferi] causing agent."
All the Senate Hearings in one place!
Couldn't make it to the senate hearings last year? Well, we've got you covered with them all in one place. Head over to SoundCloud and listen to them in all their glory.